A Story of Love: The Reuwers

Foot Surgery, Moving and Open Heart surgery...

2011-10-12T07:29:00.000-07:00

I mean the title has gotta be some kind of joke right?

Nope this is our world right now. Since Labor day weekend we have been cleaning, packing, Hosting beautiful friends, rearranging rooms and planning towards a restful end that was to begin mid October. Here I am the other side of most of the frenzy and Clinging to God and his faithfulness to us.

I am sure that each day would take me under outside of Him. Three weeks ago, tuesday Phoenix had a foot surgery that went perfect, not an issue to be found. It is rare that I feel thankful for Phoe's inability to feel below his waist, but these past weeks I am. They moved bones around and cut his heel cord to loosen up the tightness and realign his foot to a neutral position. If that lingo is way over your head ( which I understand), it was a surgery to align his feet for standing and sitting correctly in all his equipment and will help with correct posture and a long list of other benefits.

Hospital life is so much a part of who we are that I feel used to the realities of it. Surgery is another world that I forget the realities of, until I am in the midst of it. Mike and I handle Big situations the same way. By that I mean we always struggle with the same things. I get anxious towards the end of waiting and I hate the idea of Phoenix waking up without us there. He stays calm through the surgery and I watch tension overtake him as soon as Phoe's in our presence. So we are always learning to help one another through the bumpy moments. This surgery was basic and short only an 1 1/2 but in reality from start to finish, it's 4 plus hours before we're all settled into our room.

Needless to say I knew that Penelope's heart surgery would be a fierce reality check for me. I was both ready for the inevitable open heart surgery to be over. And the meltdown I anticipated coming after. We have been waiting 6 months for this day and at the same time buying up every ounce of life before surgery. Here we are a week on the other side of it and I am still processing through. Actually wanted to delete and rewrite this post a million times, because there is so much I can say about all the changes we have faced, but instead...

I want to say THANK YOU !! Thank you to all of you who pray, love and encourage us, we know the strength of these prayers and relationships. I have just begun to realize how overwhelming our life can be from the outside looking in and how I can feel the ability and Grace to walk through each day without a breakdown is only because of God's strength and people who walk beside us both physically and afar. We are constantly thankful for the way God has chosen to build our family and for our beautiful children. With all of our lives weighty decisions and the constant state of waiting we live in, I am thankful for an ever present God and a community of the richness of Grace and care! We have been blown away!

We moved into a home about 5 minutes away. Some of our close friends are renting it to us and we are excited to have a New, wide open space. We have had tons of help and continue to have offers for help, thank you everyone. So now we are SLOWLY settling in. Rowan, Phoenix and Penelope are all settling into life and we will hopefully return to life as we know it sooner than later.

In closing, I want to say a couple things that I have grasped and learned through the WIld ride this last month plus has been.

1. LIVE in a place of DEEP THANKFULNESS at all times there is room and so much in this day to day life to be overwhelmingly thankful for.
- I met a family who has lived the entirety of their beautiful son's life in an a hospital (intensive care unit) room. 12 long months with no promise of ever bringing their son home. THAT is not our reality, Thankfulness and compassion overwhelm me!

2. God is always present, always waiting and always listening to those who cry out to him. He loves to pour out his Grace and to break in to our moment to moment life. Prayer works, Trust in it!

3. That Miracles happen everyday in forms we are TOO familar with, like the medical field. BUT let us not overlook the MIRACLE that they are. My daughter has a NEW HEART, because of a Surgeoun's hands, brillant minds and most of all a Sovereign God who gives all ability and wisdom.

4. That we Reuwers are a loved family and graced with so much richness in family and friendship, it can be overwhelming, but I am so THANKFUL.

There is SO SO much more but I'll save it for another post 3 months from now, ha ha!

Penelope Promise is here, it only took me ten weeks to write about her!!

2011-06-08T16:21:00.000-07:00

Oh Penelope!! She has taken my heart on a WILD ride, I am so in love! For the first weeks it was painful to put her down, so unnatural feeling actually. I felt with every passing moment of staring, starry eyed at my girl, that something deep was happening within my heart. It was and is!

This is the first time in 4 years that we took our baby home from the hospital. Hearing our baby cry and picking her up at the first sound, is a gift. It brings with it so many emotions to watch her move her legs wildly, to kiss her face with no tubes, to hold her close without monitors whispering or blaring at me, to nurse her whenever I want, not because someone told me too, to snuggle her with no interference, to kiss her, love her without fear or anticipation of the hard road ahead and to be me without someone watching over my shoulder in a curtained off area.

This is a small list of the beauty of her life and the restoring power it has had to my heart. I knew that having Phoenix in the Neonatal Intensive Care Unit was hard on my heart and a crazy 3 months, but Penelope has been a vivid reminder of that painful time. Such a stark contrast and I am savoring every moment and allowing myself to feel at the deepest levels, the loss of those days at home with Phoenix. Moving forward in Joy and resoration! I love it.

Penelope Promise is so sweet,lovely,cuddly and chubbing up good. We are attached, she goes everywhere with me and not just cause she's nursing, I am just enamored and enjo having her by my side. Looking forward to all that is to come for her life and the Promises it holds.

Don't worry I still ADORE my boys, they are precious in everyway and adjusting in their own ways.Phoenix is growing stronger each day and I am amazed by his progress and his determination. He inspires me daily with his strength and desire to work hard at reaching new milestones. He just started smiling at me instead of screaming everytime I looked his direction. He became very attached to Mike while I was pregnant for many reasons, but mainly because physically i couldn't tote him around all day. Papa willingly did and does always. He's so committed to him not feeling left out, just the other day he was playing football with him in one arm while throwing with the other. Superman indeed, with a Super heart, love him so.

Rowan, is showing his need for attention in totally different ways, he loves me and follows me closely if I am available. I love who he's growing into as a brother and son. He often asks to hold Penelope and makes Phoenix laugh consistently. I love his compassionate nature. He wants me to look and watch every new thing he does (this might be a 4yr.old thing), which is helpful for me to stop and give him my attention.Discovering that he is cute, we've caught him making faces in the mirror and smiling often. As well as discovering what he is capable of doing!

Life has only picked up the pace in most ways. Hard to believe we've been back in Wisconsin for 9 mo. and I am continuing to smile at the craziness of our lives, always changing! Phoenix therapy schedule and the additional daily routines added to us. We are so grateful to be a part of life here and to continue watching our lives unfold as they will!

Mike and I are doing well and are getting away for an overnight this weekend for our 6 yr. anniversary.Been thinking back on the highlights of each year, so thankful for Mike and how perfect he is for me! WOW, it has been an extraordinary 6 years and I have loved all that God has done in us through the trials and blessings!! I am more ecstatic today than I was the day I married him, to spend the rest of our lives together. He is my best friend and we make a GREAT team, most days =}

We love you all and thank you for reading, loving and praying for us.

Waiting on life unfolding!!

2011-02-14T19:40:00.000-08:00

Some weeks blow me away with the stories I hear about friends of friends or even the very interaction I have with friends and family here.

Stories of an Aunt being a surrogate for her niece, what a gift and honor. A father who lost his wife and daughter in a car wreck and his unshakeaable Fatih. Two friends in the last months and days of pregnancy, whom lost their baby girls moments too soon. A dear friend who has grown children taking on fostering a toddler and a preemie and all the heartache and hardship of that season of life all over again. A precious friend who is fighting for a "new job/ path", but loves deeply and gives all that she is to others without limits.

Seriously, I could go on and on. I am in awe and wrestling heartache with all of them. I love the generosity of these people and their stories make me so thankful and honored to be a part of there journeys. I have found great encouragement from talking and walking with them and it has seriously brought forth Gratitude and Prayers for the blessing of each moment.

I would love to expound on all these stories, but know that most of you are here to read about us and all that we have been upto, since I am totally slacking on the writing end of life. Days fly by, ok Months fly by in our house!

I could sum up this last few months as Waiting on the process! Since I am pregnant it is an obvious parallel, but it has been the theme and seems to transcend into all areas of our family. So my tip and what I am learning is... Trust God and Enjoy the process, cause time always provides growth in us. Growth of Trust, Character, Hope and deeper understanding that the process has GREAT purpose!

Here's the updates:

Mike: He started school in January, full time with the goal of getting the credits he needs to apply for PA (Physician Assistant)school. That is the long term goal as it will be about 2 years from now at least. We will know more as the process progresses. The decision to do this was a process that began at boot camp and concluded with him breaking his wrist in the military. Through the waiting game we really saw the Wisdom of God in him moving forward in this desire of his and the benefits to our family even today. He is loving school, he is a really great student and enjoying the outlet of learning. He ends up being at school two days a week (7am-7pm) and then is able to be home with me and the boys the other days. Well not that we are all actually ever home that much together, with all the appointments and therapies. But I love having him around, I am so thankful.

As far as his wrist goes. It is currently showing a cyst and 2 tendon tears, which they are hoping to repair through a surgery this summer. The Dr. believes they will not heal on their own and he is still experiencing pain. Again, we are waiting to make any decisions until the summer is here!! Oh the process.

Rowan also started school in January. Mon-Fri 830- 1130. He loves it while he's there, but has really been struggling with the transition emotionally. He is such a joy, we are constantly laughing at his growing vocabulary and facial expressions. Oh my does he know how to work his cuteness, including his Dimples, WOW!! He has been coming into who he is more and more. I love watching him interact in different settings. He takes a long time to warm up to new people and environments, is not a big group person, he is a definite people watcher, content to play by himself, and confident of his likes and dislikes. Aww, I so love him and our relationship, he still loves to cuddle me and tells me that my belly is so cushy, he is not ever laying on my belly, but on my chest, which is definetly more "cushy" than usual. ha ha! He loves to wrestle and build towers out of the couch cushions... Super hereos are the BEST in his eyes and he loves to dress up in his costumes as them!

Phoenix is Amazing us daily in all his changes. Both Physically and Mentally. For a long time it has challenging and discouraging for me as a parent. Mike and I have cried many nights at this stage of life. We are learning to allow ourselve these moments. Grieving for Phoenix's challenges in this life allows us to see the BEAUTY, Gift and Strength of his life and the honor of caring and encouraging him to not dwell in his differences.

He is a toddler, he's suppossed to be toddling, playing with other kids, all up in the cupboards and everything else that can drive us crazy as Mom's. But most days he is confined to one of his four different seating arrangements. And of late the one that is my hip has been semi out of service.

Leading to so much frustration on his end, but we have seen him grow in strength from all the sitting and learning to play independently. His Core strength is a Major issue for him, and we have been working 21 months now on him sitting strongly and independently, which he is doing!! There is celebrating in our hearts here!! The beginning of many new strides for him, next will be rolling over, which will increase his upper chest, shoulder and arm muscles. So that in due time he can learn to army crawl. All this work towards a milestone that most children reach at 6-9 months. These are the daily waiting challenges for both Phoenix and us.

Officially we have gotten his wheelchair all fitted and Phoenix is in LOVE with the independence it brings. Rowan likes to push him around in it. It gives them both new roles and the ability to interact. At this point we use it mainly within the house and we will slowly begin to take it with s outside the house in months to come.

Phoe is making lots of crazy noises(we've been doing Speech Therapy 1x a wk.), loves to wrestle with Papa and Rowan,finally has gotten more teeth, smiles all the time and has a determination that causes so much admiration in my heart!! He loves to flirt and loves all attention, such a little ham. Currently prefers Mike, thinks he's the BEST PAPA there is, which is true!!

As you can see we are always changing and growing as a family. Thankful for the blessings of this season. Waiting to see our lives unfold as they will and learning to Trust that life is BEAUTIFUL no matter how challenging. These trials for Phoenix make us appreciate the ease of many things we take for granted.

Such as our healthy Baby girl coming in just a month or so!!! Mike and I can not even fathom how in LOVE we are gonna be.

Thank you for all your love, prayers and support!! We are thankful!!

Long lost Reuwers...

2010-09-30T10:50:00.000-07:00

It has been months, months. I have never gone this long without an update. I feel like my heart needs to write it all out as much as all my far away friends are wondering how and what we are doing. I am not even sure where to begin. We wrapped up our time in San Antonio at the end of August. After coming home to Chicago and Wisconsin for back to back weddings. We all returned to San Antonio for a whirlwind 3weeks jam packed with surprises, appointments for Phoenix, packing and all the details of returning to our home in Wisconsin. It was crazy!

On August 10th, which is Evan's 4th Birthday, we had a reason to celebrate as we remembered his precious life. We found out I was Pregnant, I had a suspicion but with all the travelng and my always early pregnancy testing, I waited longer than usual. Surprised and even a little anxious when the lines indicating pregnant appeared.

After Phoenix, I asked God for a year before the next pregnancy and as far as we can figure, it was a week over a year, that we conceived. Love His sense of humor. We Trust that God is building our family one beautiful child at a time, but my Faith is shaken in these moments of surprise. Because I had no control, I wasn't doing everything right like I should have been. I immediately began to list these fears/ anxietys off to Mike and being the voice of steadiness and Truth in my life that he is, he reminded me that nothing is in my control. Because with Evan I did everything right and yet he was the most Fatal and with each of them I followed the Dr's. recommendations, but God knit them as they are and chose us as there parents. AMAZING!! So I had peace and Faith in God's perfect plan and not mine.

It has been bumpy at times, letting go of my anxieties and walking in peace is not always easy. But I am in the second trimester and feeling human minus the constant fatigue. This has by far been the easiest pregnancy in everyway. We had our first ultrasound at almost 10 weeks and the baby looks great. There are certain indicators that show whether there is concern for Spina Bifida and at that point things looked good. Sweet babes was moving all limbs, which was awesome to see, since we never saw that movement with Phoenix. At the 18 week ultrasound it was confirmed that all looks healthy and we are expecting a GIRL!!! For those of you who know me, know that this da has been long awaited for me!! Mike said he has not seen me that excited ever, which I can't believe as true.But I am still rejoicing in a little baby girl adn all the wonder of this desire of my heart coming to pass.

Onto other life essentials. Mike graduated from school at Ft.Sam Houston on August 24th!! He is officially a X-Ray tech and soon will be on the hunt for a job. Though, we found out the week becfore we left that he has a broken wrist and has for about 5 months. They never ordered an x-ray till it was bothering him all these months later. For may logistical reasons they did not cast him, and sent us home. We have been home a month and are just now getting the paperwork to enable him to make an appointment and get casted. Love the efficiency sometimes. It was a work related break so we are on their time frame. We are thankful for his ability to be home and help get all of our life back here sorted out, but would also love for his wrist to be taken care of, as it is bothering him more and more. (SINCE this post Mike has had a cast on and removed, will be starting physical therapy to encourage more healing)

Rowan, has turned into a quite the little boy. He is enthralled with super heros. All of them from Superman to Wolverine. Often making anything a costume and telling us what superhero he is,the bad guys ( ususally Mike and his uncle Jon) can never win against the hero of the day. Such a great communicator when it comes to his likes and dislikes, and emotionally aware as well. We are laughing a ton these days with him and at his quirky little vocabulary!! He loves to help me in the kitchen and has become a very helpful and Kind older brother. Awe, I am soo in love with my little man, we enjoy eachother so much!

Coming home to Wisconsin has been like a breath of fresh air for us all. It has felt natural and overwhelming all in the same moments. New therapists, Dr.'s, medical systems,insurance changes and lots of hoops to jump through to keep Phoenix growing. A house and all its demands. Beautiful wonderful relationships that we are still figuring out how to fit into our non-stop world. It can feel a little bit overwhelming. I come back to the basics of being thankful and taking time to Breathe. What a difference that can make. One moment at a time and extending grace to myself often.

Life looks so different for each of us. Learning to find your place and putting down roots there can be shaky. I feel that I am constantly learning who I am and how to find a place in the new life I lead. Expectations of what it should have looked like " " only lead me to feel discontent. But if I embrace the beauty of today and can learn to see the purpose in each moment, than life is FULL of pure joy and Beauty.

I will be updating more often as life is steadying out here!!

Love you all,
Megan

Today a year ago.

2010-06-28T23:47:00.000-07:00

Today a year ago was the end of a long and emotional journey full of tons of unknowns and Faith. A miracle, a sacred gift was given to our family, Phoenix Everette Reuwer. Beautiful blue eyes, frail little 4lb. 6oz. frame and sweet as pie and full of Fight, straight out of my womb.

I remember the day vividly, the drive to the hospital at 4:45 am and then all the waiting for the C-section. All the anticipation mixed with unknowns, for me, I just wanted the pregnancy to have a conclusion in a new life. We were prepared for the long haul and we knew that Phoenix was a life that would and has reached numerous in great depths.

The heartache of that day lingers still, not being able to see him or touch him. Waiting yet again for the Dr's thoughts and next plans for his little life. We were surrounded by prayers and some of our dearest friends. What a gift that was and is!

A year already I still can't wrap my mind around it. This one little life that shines and teaches me daily.I can celebrate in all that has been restored, in all that was promised or diagnosed over him in my womb and who he really is.

Everyday he is changing, watching, growing, loving, laughing and Fighting. Fighting to be stronger, to play with Rowan, to reach for a toy, to hold his body up, to balance and to just Live Fully... Life through those Crystal blue eyes is full of trials I'll never know, but more Full of Victories this side of Earth that i will never taste, except through watching him.

No one could have told me or prepared me for what life with a child with a disability and medical hurdles would be like. To me it is the richest and most complexly draining life. It compels me towards God in ways I have never known and it takes my breath away with each new milestone he greets and embraces. I love Phoenix I love the life, joy and strength he has brought to our family. I thank God daily for miracles seen and unseen in and through his life. He leads a life worth Fighting and Celebrating, but don't we all.

Phoenix has had great strides in just these last weeks. Too many to fully get into but let me say. Prayers, yours, mine and all the angels have been answered. He is progressing daily in his strength and longevity, which is a great victory. Used to make it through ten minutes of OT and be exhausted, today he made it the whole 45 and let me tell you I left with an ear to ear smile. Food has become a part of his life, he loves it and his body is finally holding down, seriously deserves celebration as this has been a hard battle. Fists of steel have switched to loose fingers and hands that are reaching, grasping and fine motor skills developing. These are all daily occurrences for a six month old. We finally have a marker for where he is developmentally, that is wonderful. Also, we were supposed to start Cathing him to empty his bladder a month ago. Which would add a huge lifestyle change for our family and seriously by the grace of God. Both our Dr. and us agreed to wait, because currently he has none of the risks associated with not doing it. Most Spina Bifida kids, with use of there lower body are sent home from the hospital with cathing a daily routine. Laughing, smiling, babbling, all a part of consistent development are happening on a daily basis. Rowan and Jon being the greatest assets to the giggling. Leaps and Bounds!!!

We are heading into our last months here and feel grateful and ready for the completion of this season. This weekend we celebrate Rowan's third birthday and we are getting to go on a mini vacation. We have great Faith for this time together, with friends, God and each other. After this weekend there are tons of details to get sorted through from moving to establishing care for Phoenix in Wisconsin, please pray that all goes smooth and we have the grace to face any hurdles that come.

We Love you all and are so thankful for your love, support, encouragement and prayers. Life is but a breath, but so much sweeter with you all beside us!

2010-06-01T20:59:00.000-07:00

Don't have a title for this post yet... It's been awhile again and the last time we visited, me and this computer and you. I was catching you and I up on life. It's hard for me to keep perspective, OFTEN, and I let life knock the wind out of me. If you know me at all you will not have a hard time believing that when I get overwhelmed it literally paralyzes me. I just end up curled up, or reverting to not so healthy habits, like Facebook, T.v. and mindless, aimless things. Mainly because I don't know how to deal with all the emotion that is jam packed and all the non-stop of our day to day. I wish I could put words to this battle that I feel I still have not overcome.

I know that we all face it on some level. It is the unattainable, unrealistic, goal or comparison we set up for ourselves. Most of us probably have many of them. I do. One day I hope to be able to say I have none and that I never get tripped up by them.

One of my greatest and probably the one that sends me into a downward spiral on a monthly basis, is my desire (which is right) but unrealistic picture of what it looks like to be a good wife, Mother, household manager. I could go on and on about all the reasons for feeling like a failure in the area of household management. Some of it is just my personality and most of it is not having the time. But the reasons don't matter.

The obstacle is. What Mike and I face constantly, with Phoenix, with the military, with Life in general. There is reality and it is often in stark contrast to our expectations or Hope; of what we would like it to all look like. Faith is essential in the mix. Faith to see life for what it is but Hope and believe that there will be a curve in the road soon enough that will bring more Grace and new perspective. New perspective is like fresh air to my lungs and like a cloud has lifted from over my head. I feel like I can walk and not faint, run and not grow weary.

Some days the battle of my desire to keep a clean house, or at least semi-clean, plan meals, live within our means, stay on top of the laundry, meet my boys needs and still have energy to give my heart to Mike, is enough to leave me feeling like I got socked in the stomach.

I think it goes back to when I got married, I had this unrealistic picture in my head of how I would manage our house and how I would bake and clean... how my heart so desires to be that wife and mother and how Reality interferes. The reality began with working full time and barely feeling like I had an ounce of energy to grocery shop, let alone clean. Then there was a baby, who took my breath away, but also every ounce of my attention and time was devoted to his needs, which if you knew Rowan as a baby were never ending. Then there was a move and another complex, emotional pregnancy. And now there is Phoenix, whose Dr. appointments alone are more than a part time job hours. blah, blah, blah.

I really am saying all of this because I love my life and cherish my boys, and want nothing more than this ugly expectation to die, fall away in my mind and life. That it can't take up anymore emotion or time, or steal life from me. That I would know the plan God has for me as a Mother and Wife and not fall prey to false expectations. But that Hope would fill me and teach me how to juggle it all.

What is trips you up and makes you feel overwhelmed or lacking? Let's seriously say goodbye to it together and learn to Hope in a new Reality. One that allows us to eat up every precious moment we have with the ones we love.

Well that's my heart in a nutshell. It's been a long month. However, my Momma was in town for a week. It was wonderful and busy. There was a lack of sleeping which took its toll on us all. Little Phoenix, couldn't get his bearings last week. We think it is a combination of sharing a room with my Mom, constipation and teething. I never feel like we really know. All and all we had a blast, we had a massage,pedicures, went to an amusement park, indoor play land, chick-fila and Starbucks but of course. Some things are just staples in the Reuwer house. Rowan played for hours with his Granny and is looking forward to his time with her in August. I love having her here, I get a break from laundry and other chores and deep quality time, conversation and love with such a treasure and best friend. It is amazing to watch us both grow. We are changing always and our relationship only gets stronger with that growth, i love the mystery and strength of God's plan for Mother and daughters.

Mike is doing great, anticipating coming home and all the roads ahead. Throwing around ideas about more school and all his grandiose plans for our house. I love that man and his strong heart of Hope.

Rowan is a charmer. We laugh so often at his faces and conversational skills. His two favorite sayings are, " i need something" (this is always in reference to a snack or food) he will then make his way to the pantry and tell you what it is he needs. Also, "not quiet yet" in reference to a question (ie. are you done playing with that, or eating that). So hilarious in his little way!! He is changing and amazing me all the time. love him and his little/BIG personality over and over again.

Phoenix is doing well. Slow progression lately, some growth spurts and a busy scattered schedule, make it harder for him. But I know that the tides change quickly for him. We are facing the car seat, keeping him off his back saga again. He has been having some pressure sores and flare ups there, so we need some serious wisdom. It will always be a battle for him and us to keep him off of it. We had an amazing experience with Dr's and anesthesiologists, everyone when Phoenix had his circumcision, a couple weeks back. To make a long story short, we were listened to as advocates for Phoenix and completely honored and encouraged as his parents, it was so encouraging. That is when Faith and fighting through felt worth it all. Thank God for those moments!!! In two weeks we will start cathing him, which is going to require all your prayers heading our way. Our pediatric urologist told us that he is very difficult to get the catheter in, it took him over a half hour each time. I am not discouraged just know that it will be challenging and take some time to learn. More on that later!!!

Thank you for reading and journeying with us. Keep Hoping and holding to Faith in the moments when life takes you by surprise.

ALl our love.

Life at the Reuwer's

2010-05-12T14:35:00.000-07:00

Well the last three weeks we have has at least 4 if not 5 appointments a week. In the mix, Mike got his wisdom teeth pulled and ended up getting dry socket, putting him out of commission and in pain for almost 2 weeks. Crazy!!! He is good now and life is finding a pace, kinda. Before wisdom teeth drama, Mike had been pretty much running the house. Laundry, dishes, helping with dinner, setting up weekly rental car and... for about 2 weeks, it was a much needed break. In our typical all or nothing style that fizzled out and know our home looks like a tornado hit. We are seriously always trying to figure the house managing thing out, if only I could afford someone to do it for me.

I am training for a half marathon in the fall, it has been a great experience, you can read my other blog for the crazy reasoning behind this, because if you know me, you know I HATE running. I have learned so much and am enjoying the process, as much as I can anyway. http://www.be-alivebreathe.blogspot.com/. I am also sewing more and more and still involved in my internship class which has been so Amazing. I am growing daily and I love it.

Last week we had a very exciting appointment for Phoenix and some not so exciting. He got fitted for his first wheelchair, standing frame and bath seat and a specially made car seat will be when he reaches 20 lbs. Though it seems early Mike and I feel it is essential to give him the same freedoms and tools as others his age. He will be able to sit upright and be at peers level just as a child his age would be standing. Along with a million other benefits, for digestion and trunk control and independence. They have actually done studies on children as young as 6mo. with disabilities,mentally and physically using little joystick driven wheelchair/cars and the development and benefits have been phenomenal!! So needless to say after meeting with Benny our amazing equipment guy I was encouraged and so excited for Phoe to have his first set of wheels right in time for his first b-day. I can not believe how near that is!! What a miracle he is.

I know that for some reading this you may feel discouraged or numerous other emotions that Phoenix is paralyzed. But I just want to say, though there are aspects that blow my mind and bridges that I will not cross in my mind until we get there, like pumping his own gas, that one is hard for me. What a chore that will be for him. I am in Full Faith that his disability will challenge, provoke and change many of us to SEE bigger and pray differently. They are so many other areas for Phoenix that take more of my attention than this, so please just be excited with me for the freedom and advancements this day and age offer to him.

Therapy has taken its toll, going from 2 days a week to 3 days has been challenging. I am away from home much more than I would like. But I look forward to Thursday as a day of catch up and chilling out with the boys. Order comes on Thursdays in bits and pieces. Since we have been having appointments on Thursdays, this is not always the case but I have the weekends then.

Last week we had an appointment with Phoenix plastic surgeon who informed me that around toddler years, Phoe will probably have to have a new skin graph surgery because of his growth. He however said that will all depend on the plastic surgeon in Milwaukee and when/ what he feels need to be done. That was a surprise, but there is always one and I have learned to take it one day at a time and TRUST God with it all.

My prayers lately have consisted of so many hopes that Phoenix and Rowan will develop a kindred friendship and that they would both view Phoenix's life as a gift and not a curse. How to raise them this way I am not sure. But I am sure that Suffering though painful and hard offers us new perspective and deep strength and I hope that by the Grace of God Phoenix sees life through that lens. Because i have seen the stares and lack of compassion for Children and adults with wheelchairs or just special needs and know that the road can be hard.

Rowan is soo adorable as usual becoming so articulate and complimentary. He is just making us laugh all the time. Everyday he is a bit more adventurous and a ton more interested in Phoenix, which makes my heart happy. Rowans favorite things these days is to put on our shoes and walk around, he loves his cowboy hat as well.

For Mother's day the boys bought me a beautiful new bracelet and made me breakfast in bed, that was mainly Mike. It was a beautiful day of being showered with love. I love my boys and man in such a deep way and am so content in all that God has given me.

Every night lately I have had a heart FULL of thankfulness for such a rich life of people I love and who love me and a beautiful family. Thank you to you all for being a part of that thankful heart and for loving and journeying with our family.

What do you love in your life?

2010-04-23T11:06:00.000-07:00

I have so much to say and yet words escape me. These last days have been so revealing of all that God has done in my heart and our family these last months. I feel like a blooming tree able to take in the warmth of the Sun and flourish under it. I began an internship program that focuses on writing and speaking. This has been substantially more than I imagined for my heart.

This year I have learned what I love to do. I love reading, savor it actually. Reading opens locked doors in my heart and mind and stirs me to continue becoming all that I am created to be. Food, the most delicious, juicy and savory for my soul. Also, I am dreaming of all that the future holds with very squinted eyes, because most of it is beyond my ability to see.

I also love relationships, which I knew. Being without them on a daily basis, has brought that front and center. Good conversation brings out the depths of me and the joy of loving.

I love sewing, though the time is hard to find and the ideas and projects overwhelmingly mind consuming. I have learned much about me and my make-up. Where my struggles are rooted and how to let go and overcome them.

I have learned the substance of my Faith is substantial and that God never changes even amidst challenges, heartache and emotions. That His plans and purposes are far beyond our understanding and brilliant.

I want to write all that has unraveled in my heart these past months but that would be a book. Let me just say my steps are lighter and my heart free to be me.

One of my favorite books right now is called, "Where is God when it hurts" I highly recommend it to everyone. It is the best explanation of this life and it's suffering. It has been deeply encouraging because it confirms so much that lives in my heart when it comes to God and his allowance for suffering in our life. He will use it for good, if we allow him to. Faith is Trusting that he is there in the midst and that is just beautiful.

Enough about me.

Wanted to share some pictures of all that has been going on here and let you in to a little bit of our day to day. Rowan is growing up and he rode his first pony, which he loved. Phoenix is turning a corner and becoming much more interactive and active. In turn causing Rowan to be much more interested and interactive with him. They laugh a ton at each other and there is no greater sound than that of their friendship growing in laughter.

Mike is doing great at clinicals and we are savoring his new schedule. He has been a fabulous support and help and watching the boys and him continue to develop the beauty of the Father and Son relationship has been Wonderful!!!

We got great news on Phoenix eyes this week. They are maturing well and he is seeing perfectly No sign that he'll need glasses or surgery. Which is a great relief and total miracle in light of his first diagnosis of maybe never seeing fully and optical nerve immaturity. I loved hearing this news.

We are now embarking on three days of therapy for Phoenix instead of 2 because he could not handle back to back Occupational therapy and physical therapy. This was a constant discouragement to me. As he would leave each session exhausted and frustrated and I would leave discouraged and a bit overwhelmed. So I made the decision to take on an extra day, which is a huge challenge in many ways. We have one car, so when I have appointments I have to take Mike to work and pick him up , which is a challenge with nap times and the such. Therapy sessions from start to finish invade and take about 2 to 2 1/2 hrs. with driving. So that takes a toll on my day. I am thankful for this invasion, but still learning to give my all to the boys when we get home. Rowan is so flexible and there are days and weeks I see the toll of me being away so often. This week we clocked about 12 hours at appointments and today is my only full day at home. None of this is me complaining, but me asking for your prayer, as this can take its toll on all of us, our schedules, to-do's and life in general.

We are thankful for all the progress in Phoenix and the lack of complications we've experienced int his first year. I know that this is a direct answer to prayer. Thank you all for being so Faithful.

Thank you for walking this life with us, we love you!!

Life is but a breath.

2010-04-17T23:19:00.000-07:00

Maybe tonight is not a good time to write. I have just came out of a week that I would rather not think about. Let alone relive for you. It has been one full of long days and draining emotion And still no conclusion.
But more than all that I can not stop thinking, aching and praying for dear friends of mine. On thursday my best friend Shannon called me to tell me that her brother and sister in law (Adam and Annie) just lost their aughter. Delia was three and like sunshine on a cloudy day. She loved life and made her family love life as well. Ann and I were pregnant together and though we have woven in and out of eachother lives on special occassions there is connection in our hearts. Mike and I have been so fond of her and Adam from the start, it was always easy and rich conversation with them. They are beautiful, strong and authentic in heart and soul. Tomorrow is the memorial and a flood of memories and emotions come.
I can't stop thinking about our first born Evan and the roads ahead for Annie and Adam. Grieving and life are long journeys, where every breath can be painfully refreshing or crushing. Some days, I couldn't wrap my mind around the fact that I birthed a life that I would never get to make memories with. Other days would pass like wind and I would think of Evan and move on in hope and joy. For them, all I can think about is the ache of so much of their life that was filled with her laughter and tears. Each room and memory will lead to deep and raw emotion that will at times take there breath away.
The flood of emotions. Grief. Thankfulness. And so much more complex heart longings for us, for them, for you.
Life should be cherished with everybreath, I miss this so often.
And I pray that tonight as I remember Delia and ache for Adam and Annie and the whole family to whom we love dearly, that we would step back and cherish life and breath. Joy and pain.
And celebrate a life of beauty, though much to short.
Delia dances in heaven with flowers in her hair and a great smile on her face.
May we dance and LIVE with those we love while we can.

2 months have come and gone.

2010-03-22T10:06:00.000-07:00

Mike's Graduation day, he surprised me with that gorgeous yellow coat I am wearing, love his ability to shop and spoil me!!

Walk with our wonderful new friends Tanner and Ashley, their Mom Chrystal and I have become fast friends and I swear she is Crazy taking her three and my two out for "FUN"!!

Rowan in Tanner's Buzz costume, he loves Toy Story, Wiggles, Sesame Street and Dora as of late.

Rowan and Phoenix hanging out eating lunch!!

Granny and Rowan, my Mom slaved her whole week here. I didn't do a load of laundry or load the dishwasher for a whole week. It was amazing, she is SUPER GRANNY and a great strength to my heart. Thank God for Mom's!!

Really, it has been 2 months, unbelievable. They have passed like waves flowing and ebbing and then beautifully crashing on the beach. We have been engulfed in the routine of Monday and Wednesday therapies, juggling one car, hosting dinner parties with Army friends, visits with Granny and Mimi, meal planning, grocery shopping, date nights, new neighbors with phenomenal kids (complete answer to prayer), sewing, creative ventures, loss of a dear dear friend, reflections on Faith, marriage and the plans of God for us...

Clearly this list just builds and builds and fully engulfs my time and thoughts, giving me life some days that are like nails on a chalkboard and others, seemingly as wonderful and refreshing as the sunshine after a dreary winter. It seems we are growing up quickly and transition has been happening for all of us.

Mike Graduated last Wednesday from the Classroom part of his time here, what should have taken only six months was stretched out to eleven. It was painstaking for him at times, but he is great about remembering that Phoenix and the time off he had was a tremendous blessing. He is such a great man, his eyes are so focused on us and he goes to great lengths daily to be the best husband, father and man for our family. I am in awe often at the load he carries and how well he does it. I am constantly reminded by his character and love, what a gift he is to me and the boys and all that know him. This week he started his clinicals which has been really fresh and enjoyable for him. His leadership at the hospital is both flexible and laid back which is a cool drink of water from the last round of higher ups. His days end so early, that we are able to spend time together as a family before the dinner time craziness ensues. Mike is most excited about coming home in five months it has been over a year for him already since he left for boot camp. We miss our friends and family and life that is Ours and not the military's. So he is eager to move into that place, but also enjoying the time we have.

Rowan, he has seriously become a little boy, no more toddler left. Talking and expressing his emotions and thoughts, brilliantly. He has learned to entertain and play alone, which has been a great relief for me. I am able to Give Phoenix and the house (sometimes) the time and attention they need. He never allows too much time to pass before I hear his famous saying, "Mama come". That is one of my favorite parts of our day and his personality. He still enjoys me and I remember to stop and enjoy him. There is so much to love about him in this age and I don't wanna miss a moment. He loves to run outside and hide in the bushes, playing with his new best friend Tanner (neighbor) upstairs, taking walks to Starbucks and lunch's at Chik-fila. Wrestling with Uncle Jon, Papa and Tanner is a consistent adventure of his days. Rowan has truly taken on his namesake in so many ways. A tree with strong/ deep roots. He draws us back to each other and him and I can always see through his nature when the balance is off or the roots are in need of refreshing.

Phoenix, is progressing. Sometimes it seems rapid and others slow and steady. His eyes are focused and strong in new ways, which is so wonderful to see. He is getting strong at holding his head up and lasting longer and longer through his therapies. We had a urologist appointment this week and have a Eurodynamics test in early April. This test will dictate a catherization schedule and all the continuation of care. He will also be getting fitted, for his first wheelchair, standing frame and new car seat (specially designed to accommodate his kyphosis). It takes a couple months for insurance and the companies to get everything sorted out and made. Phoenix will have most of it by his first birthday. Which means he'll be learning to use it all as part of his daily therapy!! I can't believe how fast the time has gone. He is sweet and content, yet strong and determined, enjoying the new amounts of personality gushing forth. In the last couple weeks he has been smiling more and more and he has the best belly laughs, deep giggles, they light up my day. Enjoying him and the pace that he graces my life with. Phoenix has soared above expectations. I find myself amazed at the way God uses Phoenix to draw me to a place of focus on God alone.

I love that each of them has opened up my heart to unfathomable riches. To imagine what there lives will become and watch them unfold as individuals is a great honor. I am overwhelmed by the blessing of all that is stored up with in this role as a Mama.

My heart is growing softer and softer daily. I feel like layers of myself are unfolding and I am learning more and more about me. Odd, I really believed I knew myself through and through. But clearly God knows me better than myself and loves to teach me more about me.

Psalm 139 is a refuge for me. I have found great strength in these words.

"For you created my inmost being: you knit me together in my Mother's womb. I praise you because I am fearfully and wonderfully made: your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you."

This is the core of our Faith for Phoenix and the essence of beauty and depth of God's love for us, that his thoughts toward us outnumber the grains of sand and that he formed every part of me before the beginnings of the earth. Brilliant he is indeed. And so kind to reveal all that he sees and knows me to be.

Our journey is full of new adventures and fresh ability to walk in liberation as promised for this year!! Thank you all for sharing in this with us and loving us. We cherish you.

New Year...New LIBERATION!!

2010-01-15T20:10:00.000-08:00

AHHHH. Picture me taking a huge exhale, in utter amazement of the whirlwind of winding rough roads this past year has been. I could write a book on this year alone and all the Seasons of change, heartache, refreshing and love we have experienced, along with a million other adjectives that would hold their own chapters. But here we are standing at the other end embracing a NEW YEAR, full of many new surprises and challenges I am sure.

So the last month has been the craziest of all, we spent 16 days in Chicago and Wisconsin and it was bursting with time with people we love and full of the many kindness' of God. We returned on January 1st and moved to a new apartment on the 2nd, which was insane, but as I stare at boxes in front of me, almost three weeks later, I know that I am a changed woman. I am learning to roll with it and be ok (some days anyway) to allow my life to be the chaos that it is. There is always room for growth, but there is ALWAYS NEED and room for GRACE for ourselves and from God.

I flew back to Chicago on the 7th for the Phoenix Runway Hairshow and Benefit, which one of my dearest friends put together. It was on the 11th, and let me just say it was EXQUISITE, she worked tirelessly on it and it was perfect in every way. 500 guests, most of whom I did not know, came to support the hairstylists that did the amazing hair and Support us as a family. I was overwhelmed and so thankful for all the love and support we experienced. I will post pictures as soon as they are available and write more, cause this could be a chapter in itself.

I returned to San Antonio on the 12th and Phoenix and I flew to Dallas on the 13th for an orthopedic Dr. appt, this is our third Dr, that is why i went all the way to dallas. It has been a hard and strange process for me and I honestly left Dallas feeling discouraged and a little bit frustrated. But today I got to talk with Phoenix's Physical therapist and she had some great feedback and felt that all and all the Dr.'s lack of concern was Good news. The current route we are going with taping and splinting his club foot has shown great results and we will continue to go that way. He does not have to have surgery at this point, which is GREAT news!!! Hardest news to swallow is that he has no feeling from the waist down and when a Dr. confirms it, with all the long term realities of it, such as no muscle tone and or control, my heart aches deeply and I find myself reaching to God for a miracle. This always lands me in a place of deep thought, and I have to remember that we can not understand God's ways or his plans and that the best place to rest is in Hope and Faith, that God is always faithful, no matter what it looks like to our small seeing eyes.

Can't believe it is February and I am still trying to settle into the apartment, not finding the time or energy I need to get it all sorted out. Mike always reminds me that the boys are the most important. So I am trying to keep my eyes and heart set on giving to them and when I get the moment do the rest.

My sister in law Lacey told me a story about a friend who picked one word for her new year and that was the word that she focused on and asked God to make her year look like. So this year my word is Liberation, which is a strong adjective, but I feel this promise over 2010.

I have realized and discovered so many or my strengths and weakness' this year. A lot of the trials I face are within myself, my own criticizing and my great weakness of desiring to please people. I know myself pretty well and have worked on this area within myself many times. And yet have discovered at a deep level that I allow myself to carry the expections and judgements of others that are placed on me. This is one area I know I am being liberated or set free from. This time I believe it is not in I don't care way of thinking. But instead, I will be strong and confident in the road I am walking and in the decisions I have to make for our family. I desire to walk in a bold and strong stance and to not allow my fears and others judgement pull at me. This season alone has allowed me to face deeper parts of my heart and put focus and energy into changing. It has also allowed me to feel isolated and in turn be hard on myself, but that is all part of last year.

My focus has shifted and I feel lighter and able to tune out my own self- critiquing and tune into encouragement and God. I am taking babysteps toward getting a grasp on the day to day running of a household that so overwhelm me. I am finiding time and peace to enjoy each day even if it means nothing got checked off my to-do list. This is a season and life only continues to ebb and flow towards newness.

We love you all and thankful for your friendship and love in our lives. I am hoping to update again soon as there is much more to share and never enough time!!!

Alone

2009-12-10T17:47:00.000-08:00

Alone seems like a word we are all familar with, we all face this feeling, thought or attitude in our heart on many occasions. Whether it be a situation, emotion or just life in general. Some of us know it and its lingering memories so fierce that the faintest implication can bring back its many complexities. For example when Mike was in boot camp my best friend Dana's husband Nate was in boot camp as well. They were not together but both away, everyday Dana and I has survival tactics. They included loading our 1 1/2 yr. olds in the car and indulging some of Wisconsin's finest Luxury excursions. Mainly trips to Starbucks, drive-thru only, we would have to be insane to drag those to any further than the car most days because as much as we were feeling alone, they were in the same boat, yet had no understanding of it all. One of our normal escapades, was McDonald's Play place, which is only a luxury if you are a stay at home Mom with a winter stir crazy child, maybe not, but for most. All of this to say Dana took Olivia there last week and it awakened in her many emotions including aloneness that were rooted in her and I during that season. Olivia, however was more annoyed than anything that there were BIG sweaty kids there playing in her area and running her over.

My point is, this place is a hard and desperate place. An emotion I wish God kept hidden in some place far, far away. It is what I have felt and articulated to God in too many conversations. From the All day Dr. appointments, where I only feel judgement and the deep resolve that I am so Alone, to the everyday realities of living in a World that has no filter on their thoughts being daggers that no one has the right to articulate, all the way to the depth of misguided perception of ourselves.

There are too many stories to tell and example in all that I am saying. I am sure you can reminisce and pull quite a few experiences of your own. For the sake of understanding here's a quick one. One day I was at a store just wasting time between appointments and a Woman comes up to me and asks, "What did you do to your baby's foot?" Phoenix wears a cast on his Club foot to correct it. Of curse being so taken off guard at this implication (as I always am). I politely responded with, "my son was born with a Club foot and the cast is to help correct this". Though inside I wanted to scream and yell at her,"Who are you to insinuate that I am faulted in this and how dare you?" It didn't stop there however, she continued on with a story of one of her children being born with 6 fingers and having to have it surgically removed and assured me that He would be ok and never know the difference. Then again that emotion creeps in ALONE.

What I wanted to explain to her, if she had a moment to listen, was that the Club foot is just the beginning and that Phoenix had been thru multiple surgeries and that Our family has sacrificed hours of energy and Faith into this little boy and that this is the beginning of a long journey not a surgical removal of a 6th finger.

Now don't get me wrong, I appreciated her heart of trying to relate and encourage me, but our problem as people is we just don't always take time to listen or think about what we are about to say. Everyone has a Story and it is ALWAYS more deep and intertwined than what we see. I feel challenged in this daily, to stop and care for someone who is in need or merely reach out to those I am close too. I don't always have to Understand it, because it's their story not mine, but I should ALWAYS be there to listen, encourage and love them the best I can.

This is a middle line story I am telling, there are many more that left wounds deeper and brought tears on my way home from the interaction. The most current one was the situation with our apartment, it is too long to go into. But let me jut say this, Compassion and Understanding are lacking in our day and age and so many unbeautiful characteristics are the driving force behind buisness' and people.

So this is the nutshell version of these weeks and months with Phoenix and they all lead me deeper and deeper into myself, which always has me running into the arms of God. Because when I feel most understood, judged or Alone, I know that He is right there to walk with me through it all. To gently remind me that I am never Alone, that He is always there. The Truth is that we are not Alone in this life, there are many people who pray, love, encourage and support us daily. All of you who love us through it all. Each moment we face this place, aloneness is the moment where God is drawing us, to Him. To Know that He cares, understands and is ALWAYS there. Cause sometimes even with all the love an support we have surrounding us, no one else is walking through it physically beside me, besides him.

Know I am not wallowing in this place and I am annoyed that I will revisit it many more times in my life, as will you. But I come out stronger and more aware of the reality of what I am facing. I become more prepared to address the Thoughts that should not become words and the implications that I am doing anything less than the Best for my family. I am becoming graciously assertive. My desire is that through an interaction with me they will think deeper about what they are about to say and have more compassion before passing a judgement on others, as well as realizing that Our Story, your Story, their Story is not what it appears to be at first glance.

We are doing well and continuing to learn and Grow as a family. Phoenix is doing good, he's progressing and changing daily and we love him so much. Rowan is content an hilarious, he keeps talking about all the people he is going to see after he goes on the Airplane. Mike is doing Awesome in school and is soo looking forward to 2 weeks off. Jon got a new waiting job at a busier restaurant and is doing well. I am learning and growing and becoming. My heart is at peace with the pace we have to keep and this season of Craziness. We are moving when we com back on January 2nd to a 3 bedroom apartment, which is a huge answer to prayer.

Merry Christmas to you all, we love you and are grateful for your love and support in our lives.

UNKNOWN

2009-11-18T21:46:00.000-08:00

I am not sure where to start, i have written this post about 10 times now in my head about all the challenges I have been facing and all the up and downs and in and outs of this life I live. It never makes it's way to the blog only stored in the file cabinet in my head. It has been one of the hardest few weeks i have had since Phoenix has been home. In so many ways I can not put into words all the emotions, what triggered it or where to begin. But after a Beautiful time with one of my dearest and deepest friends I see more clearly, maybe that is.

Because I don't even know where to start, I just don't start at all. It all brews within me, taking over my heart, my head, and my daily living. you know that feeking of being lost somewhere in it all. Three weeks ago we had Phoenix's MRI which was the beginning. He had to be intibated(put under with a tube down his throat) for my son to come off a machine and breathe on his own is unexplainably hard. That did not happen this time but has been our experience before. Add to this an Anesthelogist whom on both occassions we worked with him rubbed both Mike ans I the wrong way, not very helpful.

How can I put to words what happens in the time I wait for my baby to come out of surgery or any procedure in which I am waiting in a room. Irrational fears whisper. My whole being waits in this anticipation, everytime the waiting room phone rings I hope it is for us, or a Dr. walks in I pray it is ours. What surfaces in these hours is the memories of Evan our first born, the time when the Dr. told us he had a fatal birth defect to the day he was born not to Earth but only to Death. You see that is our only experience with Children and Birth defects. Every time we wonder are we gonna have to be the parents who are told the Horrible news?? I don't live in this place, I only visit it while waiting for the UNKNOWN.

Truly it is there that anxiety can have its way anyways, for all of us. We can get lost in previous experience or in our minds lurking fears. It is these times that again and again I have to entrust my life and Phoenix's and all the plans for us as a family, to God. He is the only place I know Peace in.

The Mri ripped into depths of me in new ways. It was the beginning of seeing what was lying in the crevices of my heart, questions, fears, doubts and FAITH. In these moments I am overwhelmed that while most children and their families will maybe experience one MRI, Surgery or major medical intervention, or situation where we are completely at the hand of someone else. But Phoenix this is what his and our life will consist of. Not to be dramatic, but truly, we are only on month four of his life. This is when the tears come and the realization that what was once "normal" no longer exists.

Now if you know us, you will know that my life, our families life has never been "normal" and most days I am ok or really appreciate that. But in those moments all I want is for my baby, for him to be able to have it all in the way we see "it all".

These times take me hours, days, sometimes weeks to unravel. What I am feeling, what i need to SEE and who and where GOd is in the midst of it all. Not that God ever changes, but His heart is that we know him in all these times hard and easy, know who he is and what he desires us to grab a hold of. That is where and when my Faith stands Strong on God.

Here I am three weeks later, to report that I have faced many more obstacles of my mind. The ones that come in the form of self-pity, comparison and feelings of failure. In this moment as I write and just coming out of a great time with one of my dearest friends, I realize that so much of what we give our thoughts over to is not the TRUTH.

Because most would look at my life and say I am doing a great job, but I would look at the day to day of my life and think I am lacking. My house is a mess, my son watches too much T.v., I am never on top of the weekly to do list and... Well let me just say.... I never feel ahead. I know all this is not the TRUTH. Because if any one of my friends was living in these thoughts or feeling this overwhelmed, I would tell them that what matters, what really matters is, LOVE.

Loving your husband, children, friends and family. My Mom taught me that one. The day to day is always there and we are our own worst critics. My life is not measured by my accomplishments of cleaning, but by where I invested my time, heart and love. That I can say with all my heart is in God and those I love, at this time mainly my family.

So all of this to say, here is a little window into all that I am processing through and how it can take me a LOOOOONG time to come back to the simplest Truth. Thanks for listening and caring and I hope you receive God's grace thru it all.

The GREATEST news is that Phoenix's Optical Nerves are NOT premature, so now we meet with the Opthamologist on Dec. 1st for his recommendations, whether it be therapy and glasses or what??? This is a Miracle and answer to prayer, I know that with all my heart. He is doing well, the greatest determent to him at this point is how well and how far or near he can see, hopefully we will get answers. Otherwise his Plastic Surgeoun is thrilled with his back and the Neurosurgeoun reported that all is well with his shunt. So he is growing and developing daily and a ccomplete JOY to have.

Rowan is Hilarious, everyday he says new things and they have us rolling in laughter. He does this new thing, when he gets his feelings hurt. He'll walk over to a corner and put his head down and lip out and pout, it really is adorable and his way of communicating with us. I love who he is becoming daily and enjoy our times together.

Currently, we are looking for a house to rent, we have outgrown a 2 bedroom apartment and are hoping to move into a house after Christmas for the remaining 7 months we are here. So please pray for that, it is really challenging to find a house in a neighborhood that is close to Ft. Sam and the hospitals, within our price range. I know that God has something in store and maybe it is to just stay put, either way we appreciate your prayers for all the details.

Thank you for all your love, encouragement and prayers. WE love and feel honired to have each and everyone of you with us in this journey of Faith and fighting.

Everyday, Every Moment Miracles...

2009-10-26T14:49:00.000-07:00

My Aunt Tricia gave me this onesie for Phoenix, it is my most favorite to date. It reads MIRACLE on the front and has angel wings buttoned on the back. As I was spending time with a dear friend of mine this weekend in the thickness of conversation about all the hard trials we face in life. I would look over at this onesie and think about all the Miracles we do get to see and how sometimes they are just right there in our face and we take them for granted daily. How my heart can ache so deeply with a friends, how my son who along with so many other complications had legs that were stuck straight out with no ability to even be bent, now bend and have layers of chubbiness, how my husband is my best friend and greatest advocate of my dreams in this life, how Rowan changes and loves more deeply daily, how my brother in law stopped his life to help us and be apart of this journey, how so many love and fight and believe with us for all our dreams, and .... So much more, I could just keep going.

But my point is for you to stop and think and thank God for all the day to day miracles you over look and to appreciate the trials as gifts that inspire us to love deeper and judge less. Judging less is the greatest mountain to climb I feel, but I feel so amazed when I am able to do that and the beauty of embracing a person where they are, as they are is exactly how Jesus lived daily. Been thinking about all the judgements, maybe just in my heart that I pass and that I feel passed, how hurtful they are and how I have no right, because if I really knew the depths of what they are facing i would find myself crying with them rather than judging them. Being able to be the Miracle that they need that day, maybe just the miracle of kindness. Simple but beautiful!!

We had a good week and a GREAT weekend with my friend Katie and her daughter Kayla, Rowan and her hit it off instantly and really enjoyed there time together. Katie is one of my dearest friends from Cosmetology School, we became friends the first week of school. Pretty much were inseperable for the rest of our year. She is one of the kindest, most sincere and generous in giving of herself that I have known and I feel blown away by her continually. So glad that she came and we were able to have a chunk of time doing life together, it was too quick, but so refreshing.

Phoenix did not have his Mri or Opthamologist appointment as he was congested and had a cold. He has to be sedated for the Mri so they rescheduled for November 2nd. That was a relief to me. This week we have follow-up with plastic surgeoun, neurosurgeoun, and physical therapy. Mike is doing great in school, he has 92% average and really is enjoying it. We went out with some of his fellow classmates on friday night to celebrate a big test being over. It was really great for us to have people to connect with. Rowan is growing up everyday and he is funnier every sentence, I am so in love with all that he is becoming. Finally me, while I guess the first two paragraphs sum up me, but I am doing well and learning daily about the beauty and fight of life and Love that God walks beside me in it all.

Love to you all and i count each one of you a Miracle in our lives, thank you.

One little life= IMPACTING

2009-10-16T13:01:00.000-07:00

Just returned to Texas on Wednesday, Chicago was a much needed time of encouragement, love and blessing on so many levels. Though I am thankful for our season here, with very little on our plate outside of the day to day Dr. appointments and family. I realized what a difference family and friends make, and left me longing for HOME.

We did not STOP while we were home, but every minute and every conversation brought life to my heart. I realized to some extent the impact Phoenix' life has had and it was so eye opening to watch and hear as people told me what his little life has changed in their lives, and those were the ones that could put words to his impact. There were so many who could not but I knew they have been changed. Everytime I was moved deeply and found myself thanking God for all that he was and is doing through our family's life.

You see sometimes when we walk through hard things or make a hard decision we have no idea the ripple affect of that one trial. We sometimes are blessed enough to get a glimpse and it is then that we are blown away, let me say, "I am BLOWN AWAY." Friends of mine from growing up hosted a Benefit for our family and it was a HIT, they raised money to help us care for Phoenix and his road ahead and it ahs lifted a huge burden. So many people I haven't seen in years came to support us and love us and so many friends came together to plan it all and make it a success. We are loved and love that everyone Celebrates and Fight for his life with us.

Rowan needed this trip as well and his very demeanor is Full of life and joy again, I love that!! Even though he returned home with a cold, he is more content and growing up so quickly. Mike loved seeing his friends and meet some of mine. Phoenix was a doll the whole time, he's such a easy baby.

Well that is what has filling my heart and THANK YOU to all of you that are walking this road with us and for all your help through prayer, finances and friendship. We could not do it without you all.

This coming Monday is Phoenix MRI for his eyes, please pray as they will have to sedate him and that is so hard for me. As well we are HOPING and Praying for a miracle with his optic nerves. They are saying that they did not develop while he was in utero. I know that many of you are in agreement that Phoenix will be able to see and I know that it will take a Miracle, since currently that is not the case. I have seen improvement on his focusing since our trip home, many prayed for him. We are hoping for only more and more.

Emotional days...

2009-09-27T22:10:00.000-07:00

Summing up the last 10 or so days, the details of Phoenix's issues are too complex and even if I launch into them it is nearly impossible to understand the magnitude of it. That is ok, I understand that this would/ has been the same for me in similar situations for people I love, watching them walk through complex medical issues. It jsut gets difficult at times to never have answers you really want and desperately need.

But the Truth is life is full of unknowns for all of us and we need to focus on the knowns and do our best to Trust God with the unknowns. It has been a challenging time, I have just come out of an emotional few days and every little thing, set back would break me into a sobbing mess. I can't explain it, which is probably the hardest part. Not knowing all that I am feeling, but feeling it immensely is hard for me.

In a nut shell Phoenix back was flaring up and we got a hard report from the ophthamologist. Phoenix's optical nerves are premature, that means they will not mature, so we know that he see's, just not how well. Since they didn't develop correctly, outside a miracle, these nerves will only continue to deteriorate. These are moments when I feel the most blindsided and heartbroken for him, not only will he already not have a normal life, of walking and running and all the many many life passions that are associated with this, but he will always have issues with his spine and now his eyes. As a Mother, I feel like I can handle a lot, but these things sometimes just knock the wind out of me and I feel broken for him. Then I come back to the question of what will normal look like for him and what if our definition of normal is wrong?

God knit him together just as he is and I don't believe he makes mistakes, so he must have so much to teach me through his life. Already I have seen and understood so much, and this journey has only begun. It is lifelong for us as a family, you as my friends and for strangers as onlookers. Amazing that one life can affect so many others with such magnitude. It is these truths that I have to find rest in or the road is too challenging to walk.

I am feeling better these last few days and the emotions that I was so intensely feeling have passed, yet the heartache as I write remains. I continue to ask, seek and knock, hoping that I can continue to see God in each of these times and know what he is saying and doing.

Mike is doing great in school, and we as a family are falling into a groove for the most part. Rowan has the hardest time with my 5 appointment weeks, which I understand, because they are hard on me as well. He is growing so much in his vocabulary and adorableness, we are enjoying him. We are looking forward to the Fighting For Phoenix benefit that my friends in Chicago have been planning, it is only less than 2 weeks away. Mike is thrilled that he gets to see all of his friends as he has not seen many of them for 10 months now. I am thrilled to see everyone, celebrate Phoenix, watch Rowan and Olivia see eachother again, and have a break from specialist appointments.

Love to you all and thank you for staying a part of our lives.your love and prayers give us strength daily.

Triumphant

2009-09-14T13:29:00.000-07:00

Since last time, we had an intense couple of weeks. 5 appointments 2 weeks ago and 5 new specialists added to our life. I was tightly wond that week between the mess of our house, appointments, Rowan's melt down's and the anticipation/fear and many emotions with Mike returning to school.These times are revealing , about how and what I turn to in stress filled times. I wish that it was God more and outward controls less, but we are always learning and growing aren't we??? Needlesss to say come to the end of the weekend, our house was in order, Rowan was/ is more adjusted, he staerted to request to hold his baby brother, appointments were full of purpose and I was beginning to feel encouraged and ready for the week ahead. Thank God for Labor day =)

Phoenix had his first Dr. appointment at the military hospital, since we've been using the hospital that he was transferred to after birth. OVERWHELMING, but super helpful and efficient use of three and a half hours. Basically we met with a head Dr. who overlooks all his care and all his needs and he connects us with the right specialists and gets the appointments set up. So in addition to our Neurosurgeoun, Plastic surgeoun, Occupational therapist and physical therapists, is a neonatologist (oversees hois development beyond a peditrician's care, looking for all the problems related to Phoenix's diagnosis and the fact that he was a preemie), Opthamologist ( children with Mylemogincele tend to have issues with their eyes), Genecist (which we already saw and cleared him of any genetic/ chromosomal issues, thank God!!!), Peditrician, Urologist (they are re-evaluating Phoenix beginning to be catheridized, he has developed a kidney infection, which is a sign of him needing help draining his bladder sooner than his body is naturally)and a pediatric orthopedic ( to over see his progression of his feet and hips.

Phoenix encourages me daily at these appointments, he is so content and flexible. Making it so much easier and peace filled for me. We also had an ultra sound on his kidneys and hips two weeks ago, which is how they found out about the kidney infection. No news on whether his hips are still bilaterally dislocated still or not, the orthopedic doctor will go over that with me.

This past week was surprisingly great, it was the first week of me being a full time Momma without the stress of Mike being gone (boot camp) and me being pregnant. Let me say I LOVE being a Momma. It has been FULL of the Grace of God, I know that. And I am amazed at the fruti of all the prayers invested in our family. I have been able to enjoy the boys and feel on top of the house, which is a miracle for me, seriously. Pregnancy took a toll on me being the best me and once again I am left soooooo thankful for Grace and God's timing being perfect. I feared this past week and realized that we often fear the new seasons of life, but God is never too eartly or late when he releases a fresh ability to walk that new season out Triumphantly. I feel so triumphant and I love it. The challenges that I am facing on a daily basis become more a part of my life and less a stressful mountain to climb.

Rowan and I played in the rain, three days in a row and he loves it, so do I. Also I found an Elmo doll at a rummage sale and that is his new best friend, he treats him like Phoenix, laying him doen and covering him up as we do with phoenix and feeding him a bottle and snuggling with him, it's so endearing. He is a joy. These are the pictures I included.

In the moments this week that have felt like i just can't do it, I step back and ask for help. Help always comes, whether it is just a change in my selfish thinking or a readjustment of my heart, to remembering that Mothering and taking care of a home is a gift. Challenging as it is, I can still find joy and triump in every day if I chose to. My fondest memories of childhood were just being at home with my brothers and My mom being there, playing with us and overseeing life with us. Just the simple day to day that I can get so bogged down by, relationship is always the priority, not busyness. I want my kids to feel that way when they look back on their childhoods.

Love to you all and thank you for journeying with us in love, prayers and encouragement. It is an immeasurable gift to us.

If you are interested in coming to the benefit for Phoenix or would like to donate, here is the link with all the information. We will be there, which we are sooo excited about.

http://fightingforphoenix.giving.officelive.com/

Life and LOVE, fitting them together...

2009-09-01T13:50:00.000-07:00

Last week went by too FAST as they all do, and left me wondering how on earth me and the boys are gonna do the day to day without Mike around all day. We had five appointments this past week, all which were good reports but put a huge strain on Rowan and my relationship. He is having a hard time adjusting to all the changes that come with a new baby and one that requires so much of his Momma. We are experiencing multiple emotional meltdowns and covet your prayers, I find myself grasping for some Wisdom during all these outbursts and wonder how to meet his needs and still "do" all there is to "do".

Mike's parents were in town and they were great to be with and so helpful. Mike and I got much needed time together and attempted to gear up for this last week before he returns on Tuesday the 8th. Deep Breath, I do not know how it will all pan out, but I know the Grace of God covers me every moment of every day. That is Amazing!!!!

Phoenix's appointments went well, the biggest one was with the plastic surgeoun and much to my joy, we no longer have to bandage his back, fully closed and healed over. He still can not be on his back because of the risk of the bone breaking down the skin and coming through, which will always be a risk that we will have to monitor. We are working with our awesome Physical Therapist to figure out the right pillows and donuts to support him. Our boppy is working to prop him out without putting pressure on it for now. His feet are responding well to Physical therapy, I only have to tape and splint his right foot at night and his left (his club foot) is slowly progressing. And his shunt looks good, he'll have a head ultrasound in 3 weeks to confirm all the excess fluid is still draining correctly and their is no infection. He is slowly becoming a better sleeper, but I am amazed with how much he faces everyday and how well he does it, such a sweet and strong disposition.

This past week left me feeling overwhelmed and grasping for control by planning. That works for
people, but it always seems to be the unreachable for me, causing more stress in my heart and mind. God knows me sooo well and amidst all this I kept being reminded in my heart to take it one day at time and sometimes, one moment at a time. On sunday we were reminded by our Pastor, that life's one priority is LOVE and if we are living in love. Loving God first is our number one priority and everyone and everything else will be an overflow of that love. It seems too easy but it is sooo easy to get caught up in so many other "priorities" which only cause me stress. So taking a step back and focusing on what is important in this life one day at a time, LOVE.

Thank you for all your prayers, love and encouragement. We feel it everyday and thrive because of it.

2009-08-21T20:07:00.000-07:00

I wonder so many times a day, how Mom's do this. So many of my friends have multiple children and a lot of them make it look easy most days that is. Here it is one crazy moment after another and most days I am amazed that the day is over. Today. I feel like I can't believe it, this is our life, FULL to the top with LIFE, that most days, doesn't even make sense. If you asked me what I accomplished with my day my answer would be a dumbstruck and exhausted stare, somewhere between a 2yr. old, sleepless night infant and dinner, I think I accomplished reading a book to Rowan maybe put a dish or two in the dishwasher. I know, I know, it slows down, ok maybe not it at least starts to find a rythym, that works within your house. I constantly find myself reaching for that, and know that it is just around the corner in so many ways.
I mean already in just this last week i have become so much less intimadated by Phoenix's wound and his Physical therapy and 2 trips to the hospital with him has become minimal and ordinary. That is a gift. So many gifts daily are poured out on us and I am sooo thankful for that. This week we met many new people from our church they have begun bringing us meals which I am so amazed by this kindness. We met with our friends Mel and Wendy at the Church's coffee shop and met so many others, it was great to hear them say they are reading about our lives and praying for us. Astounded that our life has become something to read....Then I am brought to the bigger picture of Raising boys to become great men and this plan that God has interwoven so intricately to make it a Great Story full of His Character. He amazes me, with his grace, strength and view of this life we live. I am taken back that he chose us and that really it has only begun for us. Phoenix is only 7 weeks old and Rowan two and there are un named children of ours and unseen paths for us. Embracing this day is what I must always find my place in, this one day and these fast FULL days.
Ok, enough of my tangents, on to the updates. Rowan had a rollercoater of a week as most 2 yr. olds do, we are learning how to help him through all the transistions. He is doing great for the most part and like every child consistency and schedule are everything to him, security that is. I lack in those areas and am thankful for Mike's touch and the Grace of God.He is adorable and so endearing that even in a moment you can forget the nightmare of a scene he caused moments ago. It goes without saying that Mike and I are learning to not allow ourselves to fray under staring eyes in public places.
Phoenix is healing well and hopefully this week will be the undoing of Wound covering, it looks great and has healed well. I don't know what that will mean, if he'll still be unable to be on his back or if there will be set amount of times he'll be allowed to lay on it. We got a great stroller this week that has a bassinet so he can lay down on his tummy or side in it and I can be hands free for appointments, which is a gift in every length of the word. He sleeps like a newborn and does not believe night is for bed time. Our weeks consist of 2-4 trips to the different doctors and Physical Therapy. We are only currently seeing 3 or the 6 Doctors he'll be dealing with on a regular basis because some we have to switch over to military doctors for insurance reasons. This week at Physical therapy I learned how to tape his right foot to help reshape, and reposition it. I am learning to fit his exercises on his feet into our day to day. Great progress has already happened in these weeks and we are hoping and praying that will continue to avoid surgery.His shunt is doing well and this week we will meet with the Neurosorgeoun again to look him over. We also will start Occupational therapy, which will help with his developement, and give me at home exercises to do to help loosen his upper body, he tends to overcompensate because of not using his legs. His demeanor is sweet and strong and I am enjoying his intense stares and chubbiness. He is a doll, such a sweet and strong spirit.
Mike and I are not looking forward to his return to school in a couple of weeks, but know that it is worth it and will be great for us. We are doing well, looking forward to a much needed date night this week, his brother will be back from vacation and Mike's MOm and Dad are in town, so maybe we'll get more than one. YAY!

That's it. Love to you all and thank you for all your love, prayers and support.

Phoenix is home!!!

2009-08-12T19:55:00.000-07:00

It has been way too long again, sitting at Starbucks on my break time, before picking up dinner. I compose my blog entries in my head and then when I get the free moment, my fingers are off and racing. Phoenix came home last week on Thursday, it has been Wonderful, complicated, revealing and stressful in moments. It’s crazy to me how I forgot what it’s like to have a newborn and how quickly all that I thought I would naturally love to do, becomes overwhelming. I mean the simple things like holding and nursing, seem all consuming. Rowan was an intense and needy baby and Phoenix’ demeanor is much more content. But like all premature/ sick babies who spend time at the hospital, they are desperate for physical touch and time with their parents, as we were to be able to give that to him. It is however an adjustment, I guess I was thinking that life would be somewhat normal when I was done being pregnant , with Mike and got to bring Phoenix home, but instead I have felt all those “new MOM” emotions and thoughts of failing at this hard and beautiful work of Motherhood. Phoenix is all new in so many ways, and keeping up with the demands of his day to day are an insecure place to me. Yet I remind myself and know God has given me the strength, grace and hand picked Mike and I for this journey, which still perplexes me. SOOOOOO all that to say, I am learning all over again and asking God to teach me how to do it all.
Today, we had follow up appointments with Dr. Wang (plastic surgeoun) and Dr. Gennusso (neurosurgeoun). Mike and Rowan came with for the sake of helping me with paper work and support. Thank God they did. Phoenix doesn’t have a carseat ( he has a special car bed, which he lays on his side on in the car) and because of his fresh wound he can’t be in a carrier/ sling, so no free arms for me. AHHH, all the many luxuries I took for granted with Rowan. Therefore Mike had to fill out all the initial paperwork.
Good news from both visits , his shunt looks good, no more signs of leakage and it seems to be draining correctly, they removed the stitches from that. His Skin grapht is healing well, there is one area, that Dr. Wang is concerned with, but he said it will heal “eventually”. Let’s pray for speedy healing, little miracles in the day to day. Phoenix dressing/ bandage on his back has to be changed multiple times a day, because it is close to his bum and because he has no bum muscle, flat bottom, the poop tends to come up his back and get on the dressing, so with every few diaper changes we have to redo that, which honestly is a headache. Can’t wait to be done with that, about 2 more weeks, HOPEFULLY!!! Tomorrow is our first out patient physical therapy session, he has outgrown his soft casts in a week, he loves to eat and is growing amazingly well. He gained 10 oz. since last week. You can all pray that I continue to feel more confident in the exercises and eventually the taping of his little feet, that is intimidating to me. I love our Physical therapist though.
We found a church that we feel a part of, thank God. We’ve only been a couple of times but already many people have come around us and they will be bringing us meals which is incredible, because we are really out of the way. Our friends Wendy and Mel that we met at the NICU have been so fantastic at encouraging us and connecting people within the church to us. Hopefully will return in another couple weeks. Currently we are on “house arrest” because Phoenix risk of infection is still high until his back is fully healed. That is hard for the Reuwer family personality as we love to be out and about and socialize, however trying to enjoy it and Mike gets out in the morning with Ro and I get out alone in the late afternoon, good time to call if anyone wants to chat.

All and all we feel that God’s timing could not be more perfect for us, we have three more weeks till Mike returns to school and he has only had to go in the mornings for exercise and then returns home for so shut eye before he gets up with Ro. He has been so great, feeling the stress of balancing it all, but we are learning together to not take eachothers roles for granted. Why do we have to relearn these same things over and over again, like a child I swear. Jon is on a much deserved vacation, boy do we miss him, how we would do this life without him I am not sure. He is such a great brother, uncle and friend. We are so thankful again and again for all the support, prayers and love that is covering and carrying us through. Thank you friends and family, we are richly blessed. My heart is full of gratefulness and strengthened by each one of you.

On a closing note, friends and family of mine from home (Chicago) are having a benefit for Phoenix to help cover all the overflow and future costs of surgery and care for him, (So AMAZING!!!) . You can read more about it as well if you would like to attend or become involved in any way, I know they are doing raffle tickets and looking for raffle gift donations.

Here’s the link:
http://fightingforphoenix.giving.officelive.com

Phoenix is coming HOME!!!!!

2009-08-05T14:39:00.001-07:00

This week has been yet another whirlwind, and as I was getting to my end, we heard the fantastic news this Monday that if the wound on his back looked good he could come home as soon as Thursday!!! I pretty much wanted to start bawling right then, but there was no time for that and the timing was pendding on multiple doctors approval. The Plastic Surgeons approval being the top priority. He came Early evening monday and gave the thumbs up saying the skin graph looked good and that we could go home with the approval of the Neonatologist Dr. Ortiz and the NeuroSurgeoun Dr. Ginnusso, both of which were more than excited to say yes. Everyone is amazed at how well he is doing and that the wound is healing. Also, the fact that he has had no breathing issues outside of bottle feeds, which is normal, we know that it is a MIRACLE, thanks to all your prayers.

These last three days have been preparation time at the hospital and home, it is full of a flood of emotions from elation to overwhelming. We have learned everything from Wound care/ dressing to physical therapy and have had to set appointments and figure out insurance and home health care and the list goes on and on. No complaints though because he is sooooooo worth it!!! Thankfully we have the help of professionals. All our amazing nurses and doctors and Pam our personal hospital liason. Know how it works is pending the trial ovenight (tonight) at the hospital (they have hotel like rooms I'll stay in with Phoenix)if all goes well, no breathing issues or anything else, then tomorrow we are discharged. So Amazing, I can't even believe how crazy excited I am, who looks forward to all night nursing and sleepless and all the challenges that come packaged with a newborn, perspective sure changes with trial. I sure am looking forward to all of these things. The day to day is a bit intimidating but we will have a home health nurse coming three days a week for the next 2 weeks, which will be helpful with any questions, complications or fears we face.

On a daily basis we will have to do wound care for his back and Shunt in his head, watching for infection and ensuring that he is not on his back at all. Physical therapy on his feet and knees at all diaper changes, which I know will become second nature over time, a little intimidating right now. As well as paying attention to his breathing and administering meds and the likes. Seems less overwhelming when typing it out, but it is a lot of attention to him and all the signs of possible "issues".I will also do physical therapy 3 times a week and follow up appointment with specialists every week or so. All of that to say, continue to pray for the grace to care for our little man.

Mike and I are continuing to balance eachother out and learning to encourage and strengthen one another in this new season. He is home for four more weeks which is the amazing provision of God, his timing is always perfect. I am thrilled to get to be a Momma at home and to learn all that is to come to care for him and Rowan. Rowan is getting excited as we have set things up for Phoenix, we've explained that he has ouwies and that we have to be very gentle and he said he wants to hug and kiss him. SOOOO cute, I am looking forward to there first meeting, I know after the initial adjusting they will have a very special bond. We went out to dinner last night and there was two brothers sitting next to us the younger one was mentally slow and the older brother handled him so well and lovingly, not even noticing that so many were effected by his love. I felt like it was a gift and picture of the dynamic of Ro and Phoenix together, even though Phoenix's handicap is physical and not mental.

Thank you all for your prayers, love and support we are amazed and thanful for your continual walking with us in this journe, we love you all. I will write again when we are home.

HOPE, it is good for my heart, challenging for my head!!!

2009-07-28T16:02:00.001-07:00

I know this update is later than most, but I have been waiting for things to steady out a bit. Last week was FULL of it's ups and downs and my heart clung to Hope, but my head was uncertain of what to hold to, it questioned so much of this process and resigned to a less abundant place. Not Hope, but uncertainity. God as always showed up in my life and realigned TRUTH in there. God never fails to amaze and provide and I want to thank all of my friends and family that have been an extension of that in providing financially this last week for us, thank you!!! To all of our friends and family that are praying and continuing to walk this road with us, thank you for your faithful and fervent love. Hope comes in these times because of all of you!!!

Let me begin with updating you on Mike and flow down the list, Mike had to return last week, just in the mornings, but we were uncertain what they were going to expect of him. His Sergeant has shown great favor on him and has just as of today allowed him to only come for the morning exercise and call to check in twice a day, which is AMAZINGLY kind of her. He will hopefully be able to begin school agin in September and finish around September of next year, this is all pending on the length of Phoenix's recovery. He is able to be here with me and right now we are able to go to the hospital once a day together. He is handling life well, he misses his friends and home. He is Superman I swear, he does a great job of balancing all that is on his plate. I am so thankful for his love, friendship and strength in my life.

Jon is still living with us and was working 40 hours a week while my Mom was here and is preparing for a two week vacation with some great friends, he deserves it, he has been such a blessing to us. Mike and I are constantly amazed by his love and ability to care for Rowan and help us through this season with all his serving, what a treasure he is to us as a family. Good old uncle Jon!!!

Rowan is a super star, last week was one of his hardest, we are breaking him of some temper tantrums and learning to move into a new stage of redirection and firmness with him. Even in his hard moments he is a complete JOY and gift to us. We feel so thankful and honored that God entrusted such a strong and compassionate little boy to us and amazed at how much he grows daily.He loves book, wiggles, the pool, granny time (he would wake her up every morning around 8 to hang out), he doesn't wake up for us until 930 or 10, hanging with his papa and uncle Jon, the park, five guys french fries only, we haven't recruited his taste buds to cheeseburgers yet =)and procrastinating bedtime by asking to snuggle ("which we love as much as him).

As for me, I am doing one day at a time, these days all run together. Between 2 trips a day to the hospital and planning my day around pumping and phoenix's feeding times,dr.'s bedside appointments and time for Rowan and Mike, the days fly by. My Mom left on Monday, having her was wonderful and seemed unnatural to say goodbye, as if she was meant to be here forever. It was hard for both of us to say goodbye and we miss her deeply already,she is such an amazing, grannie, friend, housekeeper and shield of hope and faith for us. That has meant trips alone at night to the hospital which has been fine for now, just a new experience, as for the last three weeks her or mike have been with me for each trip.

A couple weeks back we met another couple here at the hospital whose baby was in the NICU as well, and they have quickly become astrong part of our life and a gift from God. Their names are Mel and Wendy, they have been a rich blessing to us and we have become fast friends with them, the type that you feel you've known all your life. They introduced us to their church and we love it, met with the pastor this week he came to the hospital to meet and pray for Phoenix and we spent a couple hours together, he is a strong,passionate and encouraging mand and we feel so thankful to have found a place among these people, the timing of God is perfect for us, eventhough it doesn't look it all the time. I am thankful that slowly life seems to be taking a more consistent shape,I find myself grasping for control or some semblance of a normal life and then again come back to a place of relinquishing control and TRUSTING and HOPING in God alone and his plan. His Plans look nothing like mine would and so it takes looking to him and not at these circumstances to stand daily and face it all.

Phoenix, as I write this is in surgery, hopefully this will be the last one for a few months. It is to cover over the opening in his back, a skin graphing, though it is an easier surgery than the last it has been so heartwrenching for me. I love and ache for him more and more each day, it seems so impossible all that he has to face in this life, but I am so thankful that he is here and we will walk beside him through it all. Knowing and clinging to all these roads having great purpose in all that his life is about and the strength it will bring to us as a family. He is so strong and beautiful, I have learned so much from his little life already. I find myself praying for specific issues, that I would never think about with a healthy baby. Phoenix little knees were locked when born since he has no use of his legs, they have loosened with phyical therapy, but the are still straight and stiff and we so desire for them to have movement and bend with time, so that he can sit like a regular child. Also, his hips are dislocated and they as well have loosened but the surgery to help with this has little to no lasting results because he can't use them, so they tend to return to the dislocated position, please pray that we would see change and progress here, they believe there is little to no pain for him in his hips, which seriously is my saving grace. Physical therapists and DR.s do continue to say what great progress he is making and that they are impressed with his great disposition and strength through it all. Our Little Trooper!!!

We have been told at this point in best case scenario, if all goes well, Phoenix culd come home with us as early as 2 weeks from now. We have learned not to cling to these things since everyday it can change. Two major areas that would prolong the process is infection and /or his breathing issues, they are hoping they will resolve themselves with time and him being moved from the "special bed" he is currently in. Last week his shunt, in his head sprung a little leak and they restiched it and are hoping that all was resealed with that. On Mondays he has a head ulrtrasound and many other labs and everything looked great, that was so encouraging after a hard weekend.

Alright that is all for now. Love to you all and thank you for all your love, support, prayers and encouragement, we could not make it through this without you all by our side.

Ups and Downs, Life as a parent, friend and everyother Role I play

2009-07-20T21:59:00.000-07:00

This past week has been full of Bad news, then some good news.Phoenix had many downs, for about four days straight, breathing episodes, wound on his back not healing, they had to scrape skin away,and a blood transfusion. On the side of life, our house is up in the air and sorting through the day to day finances, schedule and life of a baby with special needs is intense.

Good news came, and we are still waiting for more, miracles please. Friends of mine in Chicago are having a benefit for us to help cover costs that we are unable to cover, amazingly kind and generous!!! As well as Phoenix's back was looking better later this past week, his breathing is sorting itself out, hopefully without surgery and continual oxygen. He is an absolute favorite in the NICU, every nurse that works with him loves his disposition, he is sweet and so content. He loves people though, he will not sleep if we are there, because he wants to be with us. The Doctor gave orders so that I could nurse 2x a day which has been such a great time of bonding and really good for him to learn how to breath and pace himself while eating, he is a little chugger. He has less wires, so it is getting a little easier and though the beeping is obnoxious we are learning to tune it out. We still have at least 4 more weeks to go.

We made new friends at the NICU support night whom invited us to their church, which we really loved. Enjoyed lunch with them on Sunday and it is so nice to be an encouragement to others going through difficult times, we feel reminded of God's faithfulness and love for us and others.

My eyes have been openend to sooo many things and I feel aware that there is always room for change in me.I felt aware of my lack as a friend to many of my closest friends, that have faced really tough times, I felt challenged to grow and become more consistent in loving and practically caring for them. Mike and I have been amazed and disappointed in the love and generosity we have seen, felt and known in these weeks and months. We are amazed at the sincerity of all your prayers and encouragement as well of the many ways you have helped with the practical day to day needs. I know that God has and is caring for us and walking through this journey with us and though each day holds it's share of mountains, Phoenix is teaching me so much of remaining content through it all. Incredible that a little baby can teach me and change me so much.

I have been reminded again and again of the miracle that he is, here with us and I look forward to all that is to come, thank you for staying with us and loving and supporting us on so many levels, we love and cherish you all.

Hard Road

2009-07-13T09:07:00.000-07:00

Today is two weeks since Phoenix is born and it seems much longer in so many ways. This road has been rough the last few days, I have a hard time saying that out loud and even allowing myself to think it, because essentially there is so much to be thankful for. I am discovering however good and right it is for us to just allow ourselves to feel and say this is HARD!!! Life is hard, in different seasons, days or hours and we each have our way of dealing with it, I think I rise to the occasion and deal, but when it all hits me, then I just have a nice break down, and can usually bounce back shortly after.

This break down came after feeling so frustrated with the realities of my baby in the NICU. Everyday you hold your newborn multiple times a day to feed,comfort, cuddle or just get things done. Well holding Phoenix includes a 10 minute process of untangling his 20+ cords while finding the best placement for him in my arms so that none of his vitals dip and I am not interfering with oxygen or his wound and so many other things. While attempting to bottle feed, which Phoenix loves to chug so he forgets to breath, nurses try to offer suggestions and help, but every nurse says something different. All the while machines are beeping at you and I feel like a new and insecure, massively insecure Mom all over again, just wanting to scream let me just be a Mom and hold and love my baby. On top of this there have been some issues with Phoenix's breathing, he has been stopping and has to be manually reminded to breathe,scary to see, which may be related to his Chiardi diagnosis, I am awaiting a phone call from the Neurologist.

So after my cry session, I am refocusing on all the benefits of the NICU for Phoenix and us, it has given us time to adjust and learn more about the day to day of caring for him. Which will include many new things that I did not have to do with Rowan, such as physical theray, wound care, catheterising, and other day to day realities. These daily become less overwhelming and more of a reality to me, and he still has a long road ahead, as do we, full of growing and learning. Most of all the level of care here is AMAZING, each nurse loves and cares for Phoenix like we would and I feel able to leave every night fully trusting them, which is a gift from God. Above all else Phoenix is here against all odds and fighting for his life and healing from his first surgery. He is beautiful and sweet, content as can be even with all these machines and different peole caring for him. I am thankful for this MIRACLE and for all of your prayers support and friendship, as I know we would haave way more of these moments without all of this love and prayers.

My Mom has been here and enjoying her every moment of Grannie time with both Rowan and Phoenix, she is an ANGEl, she accomplishes so much in a day that I can't even begin to keep up. I am amazed and so thankful for her love, time and friendship in my life, it is a great strength and gift to me.

Quick update!!!

2009-07-07T22:05:00.000-07:00

Just wanted to update and post some pics quick. Life is one day at a time, and if we look or think to far in afvance then it is completely overwhelming. We are in need of your continued prayers as each day gets harder for me to leave my baby boy. There are sooo many emotions, I can not even begin to express the depths or width of. But please don't take this life for granted, the ability to walk, sit and live without assistance, that is a gift from God!!

My brother John was in from Montana, and the NICU has some really strict rules when it comes to visitors. Parents and Grandparents only, so we had Phoenix baptised to allow John and Jon (my brother in law) the chance to meet Phoenix in person. It was actually great and we are thankful that there is a little loop hole. Phoenix was wide awake and content.

Monday, was a big day, BUSY for him. A ton of doctors looking him over and doing things to his little body. I got to hold him for the first time and that was wonderful and I am able to hold him daily, but it is exhausting for him so i am trying not to overwhelm him. He is doing great all the nurses and Doctors call him a Trooper, which he amazes me. Everyday is a little progress and we are hoping and praying for continually more. I spoke with his Neurosurgeon and the Plastic Surgeon yesterday and they are estimating in about four more weeks he'll undergo a skin graphing surgery and then we will still have a long haul in the NICU after that. It seems so long until I get to have him near me and my heart aches that he has to go through all that he does. I pray every morning for the Grace for that day and to just walk one step at a time and enjoy every precious moment, I am so thankful that he is here.

We need your prayers, there are many decisions up ahead for us and we are financially praying for God's provision. Everyday there are costs involved that we didn't anticipate and we ahve always known the provision of God, so we trust that it will continue. We are going through a tank of gas in 2-3 days and parking fees at the hospital are 5Dollars a day and .... Please pray for Phoenix strength to improve and that we would continue to see Miracles.

Thank you for your prayers, we feel them everyday and for all your love and encouragement, we are so thankful to be surrounded by love.

Five days since Phoenix's debut...

2009-07-03T19:00:00.000-07:00

Today was my second full day at home. Our days have been FULL. Yesterday (thursday)Mike began his day at 4:45 and went to the NICU with his Mom before he had to take her to the airport, it is sad to not have her here, it was so great for all of us to have her extra set of hands and the little time we got with her. She sure loves her grandsons. He came home and picked me up and then took me to the NICU at 7am and I pumped and ate breakfast there, before visitor hours started, we had to meet with the Social Security office, and a line of other therapists and specialists visit us at the bed side to explain their role and help us with all our questions. Our nurse yesterday was Jennifer and she was sweet as can be. We were alone for awhile since Mike had to go sort the last of the details out back at the base.

It was a good morning I am continually amazed and thankful for the passion and love of these people for the work they do. Phoenix would not be living the life he will outside of all these peoples love and care. He had to have his wound care visit yesterday which is them changing the bandage and cleaning it, it was incredibly painful for him and hard to watch, my heart breaks for the amount of pain he has already endured and all that is yet to come. My hope is in that he will have a life FULL of happiness and love that will far outway these days. He is growing new skin already, that is great news, as they are hoping for that to grow and fullly cover over his wound, with the help of his platic surgeoun (crazy). It is really large, as everyone as continually stated, but after seeing it and talking with so many dr.'s I am understanding the rarity of this.

My Pain is decreasing daily and each night I am able to get more sleep, which truly makes all the difference in the world. Our dear friends Jamie and Gabe came in yesterday afternoon and they have been a blessing and encouragement in everyway, I love the provision of God even in friendship, it is so refreshing.

Mike and I spent the afternoon there yesterday and returned early this morning, yesterday afternoon Phoenix had to have a pic line and art line, put in, which are bascically very intense iv's that are threaded underneath your skin to your heart, it is the most efficent way to get Iv to him, it was a 4 hour process, because he can not lay on his back, it makes all of these process's much more difficult for everyone, including him. Needless to say, yesterday was an exhausting day and we left in time for dinner so that he could get some rest.

We returned this morning and he was bright eyed, they took him of the pain killer drip today and are slowly weaning him from the oxygen, so that he can be off some machines and they are trying to prepare him for his new bed, because it is a slow moving hydraulic bed, they are trying to limit the lines in him. He was doing great, lifting his head and responding to Mike and I's voice, these are the moments we wish we could hold him. I realize all that we take for granted on a daily basis, not just with babies but with those we love and with those who need to be loved. I know this, when we can hold him,when he's home with us, we'll probably never put him down, even in these heart aching moments agaon I turn my eyes to God holding him.

We came back home to spend sometime with Rowan and Jamie and Gabe. Then I took a nap and they all went to the pool. We returned to the hospital at Rowan's nap time. Phoenix was under a light with these adorable goggles on, his billyruben is a little high and so they are trying to get rid of the jaundice, he has been on a feeding tube with my milk for almost a full day know and they are hoping the combination will bring his numbers down. Also we got to meet his Urologist, whom is the Dr. that will help us learn how to cather him multiple times a day. Children with meningomyelocele (spina bifida) have little control or feeling of there bladder and bowels and basically need assistance and surgery to help them with these functions. He was telling us that 50 years ago most children with spina bifida died of kidney failure because of the failure if the bladder to function, but today that doesn't happen. That is a incredible to me!!!

Rowan has been AMAZING, Mike and I want to thank everyone for praying for him and wanted to update you on him. He has become more and more content daily and is very gentle and nurturing towards me since being home. He turns 2 tomorrow and I feel like God has placed such amazing strength in him and am so excited for him to be a big brother. We are consistenly blown away by his responsiveness to the friends and us eachday he becomes more of his own little person. It is wonderful to watch him grow up and appreciate the miracle that he is.

Mike and I have realized over and over again the miracles in medicine and that Phoenix would not have much of a shot at a life outside of all this intervention and speciality care that he is receiving. We are consistently amazed by the hand of God in all this and are beginning to see some of the cries of our heart being answered. We are soooooo in love with Phoenix and feel overwhelmed with joy for the life he will have!!! We continue to take it one day at a time and chose to see the blessing in each day and enjoy his every sweet movement.

There are so many things that we are praying continuosly for. We really desire to see God move in Phoenix's little body. Still we do not know what his mental capacity is like, and though we are prepared and grateful for anything we are asking God that he would be as brillant as the next child and able to experience learning and growing with other children, Mike has a picture in his head of him being quite witty. We are also praying for his bladder and bowels that we will see healing and improvement there and that his wound would heal without complications and quickly, his feet would take on better shape and loosening would happen in his legs as the physical therapists work with him. Also, there are a few differnet programs that we are in the process of waiting on to cover the excess financial strain (such as gas, parking, medical equipment...) that come with having a baby in the NICU,that all those process' would move smoothly and quickly is our prayer.

Ok that was 2 days off of blogging, I know the details will get less daily and we will try and update as much as possible. Thank you all for your love and support and encouragement and prayers, they are the breath that we breathe some days and the strength of our fight, we love you and are amazed by your kindness. We are reaping everyday the benefits of your love and prayers and these miracles that we have seen and will continue to see are because of your FAithfulness.

love.
Megan, Mike, Rowan and Phoenix

2009-07-01T18:36:00.001-07:00

He is so beautiful. Doing well today, they put soft casts on his feet, to help shape them and begin working on helpoing with all the stiffness of his legs. He is still hooked up to oxygen and they are hoping to take him off of that in the next few days, as well as they are trying to see if he'll be able to maintain his body temp. They just received his special bed and it is not a warming bed, but it moves him automatically and will keep him from getting bed sores and stiffer than he already is. His hips are dislocated from the positioning in my belly and lack of muscle in his lower body, so the physical therapists are trying to best approach positioning him and how to handle all this. Our nurse today was awesome, she let us know that the NICU life, is full of ups and downs, that he may be soing well for a few days and then not so great, two steps forward one step back. I am praying that we'll only see forward, but one day at a time.

Tomorrow, we will be meeting with other doctors that we haven't met. Phoenix has a whole team of specialists that are working with him, it is Amazing the detail of which they are able to treat and care for his needs.

Our prayers today are for him to be able to maintain his own temperature and breath well on his own and that infection would not invade his body, that his wound would heal well and new skin would develop to begin the process of covering. That my body would heal quickly and that my pain would decrease, as it has been really hard. Tonight I would get sleep and feel refreshed, we have a FULL day tomorrow.

Love to you all.

My first day at the NICU...

2009-07-01T18:13:00.000-07:00

Facebook | Joe Shelly Snyder's Photos - Mobile Uploads

2009-07-01T12:19:00.000-07:00

Facebook | Joe Shelly Snyder's Photos - Mobile Uploads

I am home!!!

2009-07-01T11:48:00.000-07:00

Hard to believe that Phoenix is here and that he is doing well. There is so many roads ahead and we will continue to walk forward and keep you up to date. Mike and I have felt overwhelmed with the love and friendship extended to us this whole process and these last days and weeks we haven’t felt alone and are amazed at God’s love extended to us through our friends and family.

It started with our close friends Nate and Dana with Olivia ( who is Rowan’s best friend). Dana and I experienced many similar seasons in the couple years we’ve been together, pregnancies, newborns, new marriage years, boot camp with our husbands gone, we spent many hours together and I have been continually amazed how beautiful her friendship is in my life and Nate and Mike have been best friends for many years,he is such source of strength and encouragement to Mike and I. Our time with them was easy and refreshing, they are like family. It was so great to see there newest addition Luca and for Rowan and Olivia to have a reunion, they had a blast together. Next, Joe and Shelly came into town on Saturday, they felt that they had to be here and since they have walked through every major season of life with us these last years, we of course couldn’t resist. Joe and Shell, have been our friends for 6 years, they were one of the first couples that I connected with when I moved to Wisconsin and they loved and invested in me so much in those first years. Shelly and I shared many nights of rich time together and Joe became a quick and loving big brother in my life. They are such treasured friends and a huge source of love and encouragement to us, Mike and I feel constantly amazed by the generous love and fellowship they extend to us. We were able to have a couple of days together before my surgery on Monday and we went on our first date in many months, it was so wonderful to share that night with them. As well as the time we had together to just enjoy eachother’s company and they encouraged both Mike and I with just loving and great converstions. On Sunday, Mike’s Mom (Amy ) arrived and she has been a blessing to have, Rowan has espiecially gotten to enjoy her. He loves his Mimi and I love having her support and friendhsip. On Sunday night another dear dear friend of mine came in to be here for the delivery and next day, Tracey. There are no words to actually explain her friendship in my life, except that it is constant and deeper than what we have built, God told her to be here to pray for us through this and it was soooo nice to have her as well. We all had a chance to spend some time praying before my surgery and it was an encouragement and brought great peace to Mike and I. We have friends coming this weekend and My Mom and a surprise visit from my brother all the way from Montana for a couple days, I am so excited to see him.
It has been so kind of God to surround us and we both know strength through our friendships.

Needless to say, I have not done a great job at getting sleep and that has made these last couple of days, extremely hard, I am not able to sleep well and am experiencing a high level of pain. Please pray for my body to respond better and recover quickly in the days to come.

Phoenix is doing well and we are sooo in love with him, he looks like Mike as all our boys do. He is strong, I guess that goes without saying, but his upper body strength is really good. After he woke up from his surgery he was looking and Mike and moving his head and body around quite strongly to try and remove some of the tubing, little fighter.He was transferred to a different hospital for his surgery so, I have not been able to see him since monday afternoon. Mike was with him before and after surgery and is fully in love with his little man. He was doing well yeaterday and had a nice visit with Mike and his Mimi.

Today, I will be released and able to spend some time near him, we will be able to hold him next week, which I am looking forward too. We have been encouraged to take it one day at a time, by friends and God, both throughout this last season and now, because each day will hold tons of new decisions and I want to just enjoy what eachone holds and not get overwhelmed by tomorrow’s, because of course we don’t even know what it all looks like. I know this is what so much of Phoenix’s life has taught me, to enjoy what I can and let go of the planning and the knowing part of life that we all want to have. We can miss out on so much if we are so caught up in what tomorrow holds.

Everyday I am learning to have a good moment of tears and to believe that all that is to come and the fact that we have Phoenix are in God’s hands and he will give to us all we need. I am sooooooo thrilled that he is here and that each day to come is full of the richness of his life and the way that we are changed heart and soul through this little child’s life.

We love you all and will update and post pictures as the days and week move forward.

Out of surgery and stable

2009-06-29T20:55:00.000-07:00

Phoenix got out of surgery at about 9pm-a couple hours sooner than expected. He is stable and resting. They were able to begin the process of covering the spinal cord opening at the base of his back and successfully placed the drainage shunt. Mike saw him afterward and spent some time with him. Meg's getting some much needed sleep...

They are now thinking Phoenix will be at Methodist Hospital for 6-8 weeks as his back heals. Mike's leave from military duty is only 3 weeks at this time...he'll be pursuing a longer leave of absence as soon as tomorrow. This is certainly an area of cocerm and prayers would be much appreciated in this regard as well.

Megan's recovery has begun well...she's been up on her own and although she's doing relatively well, she is in a fair amount of pain (as expected)...

Thanks everyone for all your support, it's being felt tangibly every moment.

Phoenix in Surgery

2009-06-29T16:55:00.000-07:00

6:30pm-Phoenix is in surgery now. Mike was able to meet with the new Dr., and hold phoenix's hand and kiss his face. They have told us that the surgery is more risky Now b/c of the abnormal spine curvature and defect bone formation on the lower spine. They have also told us more details about his paralysis. He has little or no muscles in his legs, clubbed feet and malformed hips- that he will never walk, that he will not have bladder/bowel control and that they have no idea about his mental capacities yet...he should be out of surgery around 10:30pm...will update as new info comes to us. Thanks for continuing to pray for us, we feel it!

Phoenix update

2009-06-29T13:25:00.001-07:00

Because of the complexities of Phoenix's spinal defect, The neurologist has ordered the transferring of Phoenix to another hospital with a pediatric neurologist more experienced with this level of spinal defect. They will perform the surgical procedure to cover the spinal opening probably tomorrow along with the fluid shunt. He looks good, in fact quite normal and healthy...we'll keep updating as we can. Thanks for all your prayers!
Here's link to new hospital: mh.sahealth.com/

Phoenix is here!

2009-06-29T10:39:00.000-07:00

Phoenix arrived via c-section around 9:15, 4lbs 8oZ. He is doing well, surgery will be tonight or tomorrow. I am doing well, surrounded by AMazing friends and awesome hubby. We ARe going to get to see Phoenix in the next couple of hours, and know more details. Thank you for all your love support and prayers.

Pre-op fear and Good News, REALLY!!!

2009-06-26T18:02:00.000-07:00

Yesterday, I had my pre-op visit, which i guess I did not mentally prepare for, because I was completely on the verge of tears most of the time. I guess it hit hard that I was undergoing this surgery, that has a ton of "possible" complications that are overwhelming !! In my mind the alternative birthing experience worked great and had way fewer complications, but that is just because i did not have to sign a waiver expressing all the statistics... anyway all that to say, I am at peace with this being the BEST way, though I would never chose it. Today after rest and refocusing that I get to meet Phoenix in a couple days, I am feeling much more at peace with the c-section and know that God is with me.

Today was my MRI that would help to confirm or disqualify the possible Holoproencephaly (HPE) diagnosis, which is a "non-viable with life" diagnosis. Our Dr. walked in with great news as she would say, this is one of the first times a Dr. has been able to say that to us, thus far in the journey. Phoenix does not have HPE and he they believe that it is just an extending result of Arnold-Chiari malformation which we knew about and she expressed to us that we should be encouraged because this rules out a lot of the fear of there being chromosomal anomalies, which means most of what is going on within Phoenix little body is treatable in some ways and that he may live a more "normal" life mentally that is. His mental capacity will not be known until later, but we do feel hopeful for that miracle as well.

We are thrilled at this report and are feeling hopeful and confident that we are going to see many more Miracles through Phoenix's life and the fight within him. I have been monitored this week to ensure that his heartbeat was well and that my fluid levels were good and all is well and a go for Monday. Some of our closest friends are coming in to town tomorrow and Sunday to be with us for the weekend and surgery and we are so thankful for all the love, prayers and encouragement from everyone that knows us, we can never understand all that God is doing but we appreciate and feel grateful for the Support we have received from all of you, I know we would not be able to do it without you.

Mike or I will update Monday, soon after my surgery and when we know a little bit more about Phoenix's first surgery and all his evaluations. Please continue to pray, as the days ahead are full of uncertainity and lots of hard decisions.

Love to you all

The Road ahead...

2009-06-19T17:28:00.000-07:00

I am not sure where to start. I will start with our Dr. appointment, it went exceptionally well, a ton of new and reinstated information, but we are both thankful and impressed with the staff and care we will receive. I am scheduled to deliver via c-section on Monday June 29th, they feel that this is the BEST for Phoenix and I. Phoenix is not growing, he has only gained ounces since 2 weeks ago, which weakens his chances at survival these next 10 days, we need a miracle here. He is currently a little over 4 lbs.

The Neurologist who will be operating on Phoenix is the second in command over the whole hospital and he took time out of his day to sit with us and answer the questions that he could. At this point without the MRI (which is scheduled for next friday), the only sure operation we could talk about was the covering of the exposed spine and spinal chords and the shunt that will have to be put in the head, both of these surgeries will happen within 24-48 hrs. of Phoenix's delivery. These are the details we were wanting to hear, we also had to discuss to what lengths we are willing to go to sustain life, should his diagnosis be "non-viable" with life. They will take cord blood and have it sent for analysis right after birth, within 24 hours they will be able to tell us if his birth defect is one that exists or a genetic defect that they do not know of. These are major decisions that we need serious wisdom to make and peace to move forward with all the other details.

After meeting with the Neurologist we met with the Social worker over the NiCu and who works directly as a liason between all the different programs and people that we will be working with. She was a great help in answering loads of practical questions, as well as preparing us for the realities of what lies ahead. Let me just say this FIGHT is not over. Phoenix will be shown to us quickly after they deliver him, we will not be able to hold him as their priority is to assess him and get him the proper support his body needs immediately. A team and by team I mean (2o plus) doctors, specialists, NICU nurses and student doctors will analyze and care for Phoenix, asess all that they can to come up with the plan for Phoenix in the hours and days and weeks to come. This process takes about 2 hours, which during I will be in post opt. After they bring up to the room i will be staying in, we will be able to see Phoenix, we will not be able to hold him still, until they feel he is strong enough to exert this energy. I know this sounds insane and over the top, but these hours are delicate and they have to take every precaution to enable him to be strong enough for surgery, we will be able to touch him through the bed he'll be in. Even in the days following, holding him will be based on His strength day to day.

Mike is still not living with us, but as of monday afternoon, he is just going to come home during the day, since he has to restart class if he takes more than 24 hours off of school anyway. He feels that it is right for him to be home these next days in preparation for Phoenix, I whole heartedly AGREE. I will be at the hospital all afternoon for Pre-op and a NICU tour. Also on friday morning I have my MRI and afterwards we will meet with Dr. Shields and possibly the neurologist again.

That is all the details. As for Mike and I we are just Trusting that the road ahead is paved with God's grace, kindness and FAITHFULNESS. We will get through this and Phoenix's life however long or short, will teach us, all of us the beauty of FIGHTING>>> amongst many other beautiful truths.

Thank you for loving us and walking through this time with us!!!

A week of sweet surrender.

2009-06-13T20:44:00.000-07:00

Last Thursday I had my first Dr. appointment here in Texas, which has taken me a full week of processing and crying and TRUSTING in God. The ultrasound was long per usual and the Doctors report not good, honest and thourough, but not hopeful. Phoenix is a MYSTERY. he has so many different "issues/ anomalies" that they are not sure what the best and right treatments (surgeries) will be, "IF" and she emphasised the if he were to make it through labor and delivery, we would work with many different surgeons and the NiCU would be our home away from home for some time. Now most of this was a reality to us anyway, but with new evidence of Phoenix having a new condition, called HPE, Stillborn to a very short life was a reality that we had not been entertaining and now we are at Peace with it, but are hoping for much more life for him.

This past week has been full of questions, that tend to begin with WHY??? and in the end all those questions have opened the flood gates of understanding; that we'll probably never understand much of this. But do we really understand much in this life, all trials, heartache, and rough roads only make us stronger or weaker. I believe they are full of new discoveries, of who we are, who God is and who the people we surround ourselves with are. I love that aspect, espiecially when it's all said and done, you can see much more clearly. i feel overwhelmed by the Grace of God and the amazingly supportive and encouraging friends and family I am walking this road with, I am rich in this life. All of this to say, letting go of having a plan and realizing that LIFE is LIFE, whether Phoenix's is days or a full life, it has been and will teach us so much of the beauty and fight of living, that we shouldn't take one day for granted or one life. I see all this healthy babies daily and I think, what a blessing and then a moment later can take Rowan for granted, this is the process isn't it? Loveing the ones we have and growing in the Love of God which is deeper and wider than anything we know.

This week is one of great anticipation and preparation for the birth of little Phoenix, we are so excited and elated, for the first time this whole pregnancy. We haven't had a chance between negative reports to really get excited, but as the weeks draw close to an end, and the continual growing of my belly we know the day is near. Tomorrow, we have an appointment to meet with the team of Doctors and surgeons that will be working with us and to hear a "plan of action" after he is born, of course all of that is pending how severe these different issues are. I am suppossed to be induced in the next couple weeks, so they will hopefully set that date as well tomorrow.

Love to you all and will update as soon as I know. Thank you for walking this journey with us!!!

The many roads of my heart and how they all lead back...

2009-05-28T10:18:00.000-07:00

It is amazing how in just a moment of humility, my eyes can be lifted and my heart feels lighter in the midst of challenge coming everyday. I am thankful for that. I feel refreshed as Mike and I finished a weekend together, having a husband is a reward that I have felt guilty for needing, yet I know that in this season more than ever I need his support in every moment of the day to day and I realized that is right.

On the note of Mike moving in potentially with us, it has been moving forward on the paperwork side of things. These are emotional times, because as usual I have to deal with Dr.'s and their protocall and the in-betweens, in these moments it is just trying to clearly explain what I need and hoping and praying that it is enough to move the right people to make the best decision for us as a family. The truth in all of this that I cling to is that God is ultimately in control. I have faced more challenges this week emotionally with this Truth.

I met a Mom at the pool the other day and she has 2 children and is a labor and delivery nurse and when we got to talking and I told her about the baby, she had some thoughts that were challenging and caused me to re-evaluate what I KNOW to be Truth. You see in the medical field and actually most people would ask why I would want to continue on with this pregnancy as Phoenix and we will face many challenges on all levels if he is not healed.

She said," do you know how hard this baby's life will be? and your life will be?"

I replied, "yes, I know it will be challenging."

That is all I could muster at this moment, because I never faced a question that directly, only the underlying implications that the decision I was making was wrong or selfish. These are hard thoughts for some, but loads of people think this way toward a life that is not "optimal quality".
When I got back to the apartment I lost it, thinking about what have we come to that we have the ability and control to decide who has the right to live and who doesn't and what an "optimal" life looks like... I believe and stand on that God knit this baby together and there is a purpose and destiny on his life even if it is full of challenge, which of course would break any Mother's heart to know the challenge of just "being different" than all the other kids. It is a mystery to the Doctors why my body continues to grow and nurture babies with these birth defects, when it is a mystery to a dr. I see the fingerprint of God even more clearly.

So many times this week Mike and I have faced the thoughts of the road ahead, we know that God will give to us the Grace we need to face whatever is ahead, yet more than ever we have been pleading with God to heal and restore Phoenix' body. Often times in our heart we feel more prepared for God changing our minds to see as he sees and that this child is Beautiful and Perfect to him in whatever we perceive as lack, amazing how different we see.

Well that is a nutshell of what these days have looked like. I have an appointment next thursday, a level 2 ultrasound which is pretty much routine for me, please pray that the Dr. would be compassionate and respectful of all that we desire for this baby. I am hoping that questions will be answered and the path ahead be clearer. This will be my first meeting with our Doctor and I must admit I am a bit nervous about the whole thing...

On the front of feeling settled and less whirlwindish, I feel encouraged and strong for the Roads ahead and am believing that it can only get better and hopefully a little less bumpy roads.

Love to all and I will update soon I am sure.

A day of many fights...

2009-05-14T20:13:00.001-07:00

Today I woke up and felt encouraged, like I could face this day without heartache, and maybe feel strong in my Faith and less overwhelmed by the mountain in front of me. Yet by this evening I felt overwhelmed with emotion and no persective hope for the days to come. Each day is seriously a dark battle in a ton of ways, I know that so much of this time is emotional for very many reasons. I miss my friends and family, tomorrow is full of unknowns, my husband and I live apart and see eachother an hr or so a day and oh yes, I am 7 and 1/2 mo. pregnant and my hormones and energy levels get the best of me and my heart full of emotions. These are times when it is hard to believe that I am STANDING, because I feel like I am falling into some deep abyss, yet in the simplicity that My Mom is she said, "He promises that in our weakness, He is STRONG. All you have to do Megan is lean into Him." Amazing how simple and richly true this is, yet how impossible in moments it feels, am I doing that, or am I depending on myself to get through a day. Cause if I am leaning on him and deriving my strength from him them why am a mess eachday and why does it feel like I barely made it through.

As I write this in my heart I know that the TRUTH is there are seasons that we are leaning but they look and feel so Messy and like we are just getting through, barely. It is these seasons that we feel the most known by God and ourselves, the deep recess' come out of hiding and the stripping of all that we cling to fades away. There is only one to cling to, He is never changing and never ceasing to love and carry us, even if we "feel" he is far away.

This is why I write because, it sets me strong in my love and strength in God.

Ok, so on a practicl level. We need your prayers, Mike is going to talk with the "higher ups" today to see if we can get the process of him moving in with us moving forward. Now the military moves at a snails pace and I am trying to Trust God and His timing in this but have reached a point in my day to day where physically and emotionally, I need help from Mike, Rowan is busy and heavy and my body is at trimester three which means exhaustion sets in around dinner time everyday. If Mike gets approved, which is a very BIG exception in the army, but we are believing that this is going to happen, he will be home every night by 5:30 and home for the weekends. At this point we get to see him about everyother night for about 2 hours, in which Rowan and I go to base and drive around with him or go to there local eating area and get a snack. It is too hot to be outside, Mike has to be in full uniform which includes a wool baree' and there is no formal sitting area in his dorm , he is not allowed off base yet. Weekends are no exception.

All of that to say, please pray for favor and supernatural speediness, these rare things do happen in our life and we really need to see some miracles for our hearts sake. Also, My Mom is here and we are going to be finding furniture and organizing my apartment as well as hoping to get all this Dr. stuff squared away. By the way I found out yesterday it is quite a tedious process. I will have to be working with 3 Dr. from here on out in the pregnancy, an Ob/gyn, a perinatoligist (specialist in maternal fetal medicine), and a Neurologist ( the surgeon that will develop a plan for the baby after delivery), now this is a complicated process, to find three that work together at a LEVEL 3 hospital, that will take a 7mo. pregnancy on, as I am a huge liability to them and that takes our insurance. I have had some great help in this area, thank God and am hoping to set up appointments and get the ball rolling here soon. But please pray for Favor here and connection with these Dr. that they would be a team I feel safe with and can Trust. Also, begin to pray for all the costs to come, that we would see amazing miracles there.

Love to you all.
Megan

For those who asked...

2009-05-12T07:46:00.000-07:00

I am starting this blog as an my outlet to share our story and also for those of you who want to stay updated you can. Let me just start by saying, God's Grace is sufficent and I love that we can Trust Fully and Hope Always in His great ways. Today I am gonna start with where we are at currently and will share the story of our past experience with our first son Evan later.

Currently, I am living in San Antonio, Mike joined the Army National Guard 4 months ago and just finished boot camp in Georgia and will continue on with 6mo. -12mo. of training in San Antonio, Tx. where he will be accomplishing a degree in Radiology, which has been a desire of his for some time know. God opened every door for this oppurtunity and though it has been full of trial, we are still confident in His awesome plan, and have eyes to see the end is not that far off. I moved here knowing that I would be living in a 2 bedroom apartment about 10 minutes from base and Mike has to live on base for at least the first few months, it is a weird transition and all that God is doing in our lives is challenging.

Five days before Mike left for boot camp, we had a routine ultrasound to hopefully find out the sex of the baby before he left. Because I am high risk I frequently have ultrasounds, we lost our first son to a neural tube defect called Anecephaly and my risk for carrying babies with this and other neural tube defects greatly increased after one child.

As our beloved Dr. Beatse was doing the ultrasound I knew something was wrong, as this is our third pregnancy with him and we have a really strong relationship with him. He told us that what he saw looked like Spina Bifida on the lower spine of the baby, but wanted to send us to the specialist to confirm this. He apologized profusely and was so sad at the diagnosis. Mike and I of course went into our modes, Mike always feels it right away emotionally and I always go into emergency contact mode, I call all our close friends and leaders to tell them all the details and ask for pray and support. The reality hits me about 24 or more hours later and at that point Mike has adjusted and is an amazing support to me, I love the way God designed us to carry and strengthen one another.

That day we had an appointment with a specialist in Milwaukee, we dropped Rowan off at my in-laws and drove to the hospital in shock. We would be working with the same specialist that worked with us with our son Evan and he remembered us and was saddened also by the pure fact that we were with him again. The ultrasound tech did her thing, she was kind and showed us some of the features of the baby that were healthy. After the ultrasound, Dr. Shohan was convinced that this was Spina Bifida and that it was not fatal, they however can not tell you the degree of until the baby is born and at that point they will operate.

This was an obvious blow and we felt a wide range of emotions, but mainly we felt honored and thankful that we were still gonna get a baby to keep, healthy enough to live a high qualitied life. So we continued forward with Mike leaving as we felt assured that God foresaw this diagnosis and had still opened all the doors and ordained this as his timing. In both our hearts we anticipated this "season of seperation" as one of clinging and growing strong in God. We had no idea what was to come.

My care was to continue on with both my regular OB and the specialist, I would see the specialist every 2-3 wks and Dr. Beatse my OB every 4 wks. So at my next scheduled appointment with the specialist I was 18 weeks and anticipating the big reveal, since at our last appointment there was no certainity of the sex. Dana, one of my dearest friends journeyed with me. Now, going to a specialist is full of uncertainity and honestly can be so hard on your mind, emotions and heart, seriously breaks your Faith down. There job is to give you all the news, good and bad, usually it is not good, but bleak and unhopeful. So needless to say I was prepared in my heart and mind for the news and to hear God in it all, desperately wanting to see his hand.

Both Mike and I's Faith was different this time around, with Evan we felt so confident that all God was promising us was that we could put all our hope in him and that no matter what the plan for Evan's life, there would be great PEACE and that was exactly as it was. With Phoenix, which is the name we have chosen for this baby, we both felt that God had spoken a promise of Healing and Restoration in this child. Now, we both know and have been so aware of this one constant in our lives, GOD's ways are not ours and His thoughts so much higher. So we put no expectation on what Healing and Restoration look like, we just are fully confident that His Grace is sufficent and that Phoenix' life, whatever the quality of it in our eyes, is God's perfect will. None of these thoughts are said lightly as it has taken much heartache and Trust to come to these places in our Faith and we know God is great always.

Back to the specialist appointment, it was increasingly worse news... Dr. Shohan began by showing us the Spine and saying that he can say with all certainity that this is not Spina Bifida but rather a much more severe case that he couldn't even name, because he had never seen anything like it. Both the spine and cord are largely exposed and the degree at which the spine formed outwardly was so severe that he was "baffled" as he continued to state. He went on to tell us that the baby seemed to display a bowel issue and signs of a heart condition that is fatal. Also that both of the babies feet are club foot. Both Dana and I burst into sporadic bouts of tears as this was something we couldn't have been prepared for. He pushed for me to get an Amniocentesis to help him narrow down the diagnosis to something more specific and I continued to say no at this point for many reasons. But I did agree to an MRI as this would give them a more in depth view of the babies spine. The MRI only confirmed the news we already knew, the degree of curvature of the spine was so severe that they really did not know what to tell us the road ahead looked like. Outside of a miracle ( which is what we are believing for) this baby will be severely handicapped and forego many surgeries in his short life.

Now, Mike is at boot camp and we are unable to talk at this point, so I have to call the emergency contact line to get a hold of him. This was a frustratingly hard conversation to have over the phone in 15 minutes, with his drill sergeant breathing down his neck. What a challenging time for both of us and our hearts. We continued to cling to God and fight for the Truth.

Let's fast forward to today.... The great news is that Phoenix "once existent heart condition is gone". The hard news is... Mike and I are daily battling many, many trials of all kinds, we are standing and believing in for the best and are asking all those who are reading this to FIGHT with us. These are times that produce great strength in our relationship with God if we so allow them to, we need one another and God is listening to the cries of our hearts, he wants to answer and we believe he wants to change all of us. Those who've known us for a short or long time, those who fell upon this story, we believe that the stirring of your heart is there because God is calling to you and we are asking that you respond on yours and our behalf.

Thank you for reading I will write more as we get a new specialist here in San Antonio and as we see what the road ahead looks like and as I have a need.