Life at the Reuwer's

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?

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.

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.