Monday, June 28, 2010

Today a year ago.

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!
Tuesday, June 1, 2010
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.