STRENGTH TO STAND - FAITH TO FIGHT

There is so much that I feel like was laid on my heart for this time. Weeks and months before Brock’s arrival, and before his illness, I look back and see God preparing me for this story- OUR story: events and experiences that meant a lot to me then, but are everything to me now. They have become my strength and my hope when doctors give a grim diagnosis.

In high school, my youth group traveled to Missouri every summer to help at Camp Barnabas- a camp for special needs children (http://www.campbarnabas.org/). I fell in love my first summer with a little boy named Louis. He had down syndrome, a crazy obsession with rubber snakes, and at 7 yrs of age was still completely non- verbal. My week at camp was spent experiencing life with him, and helping him do things any other child would do while at summer camp- s’mores by the bonfire, swimming during free time, riding the zip line, etc. I went to camp to bless others, but walked away incredibly blessed by their energy and love for life, and for the One who made them in His image.  Camp Barnabas was one of my first thoughts I had after we received the results from Brock’s initial MRI. I remember asking the neurologist, “We are talking about a child who will have significant setbacks, but we are talking about taking a baby home, right?” Although the implications are still far from realized about what life for Brock or for us will look like, we know we are blessed to be  (Lord-willing) taking him home at the end of this. We’ve seen and met families in this journey who have not had the same outcome and would trade with us in a heartbeat.  

When I was pregnant with Brock, I came across a necklace on a website that had the saying “Her faith is stronger than her fear”.  I posted the phrase on the wall in our bedroom as we prepared for Brock’s arrival. I remember reading it over and over again as I labored at home and brought Brock into this world. A few days ago, a good friend mentioned it to me again, not knowing that the phrase already carried significant meaning to me. Satan cannot have a foothold here…and I cannot let the fear of the future dictate my decisions or my ability to believe God can still choose to heal him completely and will be present with us even if that’s not the case. “As for me and my house; we will serve the Lord.” (Joshua 24:15)

 “You hold my every moment... You calm my raging seas... You walk with me through fire... And heal all my disease... I trust in you, I trust in you

I believe You’re my healer... I believe You are all I need... I believe... And I believe You’re my portion... I believe You’re more than enough for me... Jesus You’re all I need

Nothing is impossible for you…You hold my world in your hands.”

I heard this song for the first time at the Women of Faith conference this year. Never in my life did I imagine that three months later this song would become a prayer from me begging God to spare the life of my son- to provide healing when doctors have little hope for complete recovery and when I have no words.  It played several times during the 12 hours it took to bring Brock into this world, and it has played hundreds of times since in this little room that has become our home away from home.

Regardless of feeling like God may have been preparing me in some ways for this, I still feel weak. It’s very much like being thrown into water and not knowing how to swim. Medical words get thrown around and I go under then struggle back up gasping for air. The realities of Brock’s diagnosis are beginning to surface- both in my mind and in the conversations we have on a daily basis with the team of doctors that are following us. This week, feeding was a huge concern and we were definitely told to prepare for Brock to need the feeding tube when we left the hospital. However, the swallow study showed he was doing a good job protecting his airway, and we were cleared by speech therapy to continue practice feeding by mouth. Brock is learning to nurse again, and is taking to a bottle very well also. The past 24 hours, Brock has taken all feeds by mouth, and we haven’t had to use the feeding tube at all! We still put his seizure meds through the tube, so it cannot come out until he can prove that he can swallow the meds (which taste horribly we’ve been told). Hopefully that’s something we can accomplish this next week. Brock has been set back physically with the physical position that he was placed in while we were in ICU. His legs can no longer extend completely straight, so we are working hard with physical therapy to make that happen.

Praying that we can continue to take steps forward in faith, strength and peace, and that Brock continues to amaze the doctors. And may the God who continually counts our tears receive honor and glory through this struggle. “Therefore, I will boast all the more gladly in my weaknesses so that Christ’s power may rest on me.”

~Taryn