We’ll be using occasional blog posts on Redeemer Journal to share stories from our congregation. This week we’re hearing from Cary Sommer. Cary sings with the worship team and helps teach the children. She and her husband, Josh, live in Shoreview with their daughter Rylie, 6, and son Grady, 3. They love music and camping and laughing and playing together. This past summer Grady was mentioned weekly during the prayers of the people. Cary wants to give us some background — and share some updates.
In May 2011, our son Grady was born by C-section at 25 weeks gestation because of a life-threatening emergency. He spent 88 days in the NICU at Children’s Hospital in St. Paul. He weighed 2 pounds at birth and had a severe pulmonary hemorrhage and a brain bleed. After two brain surgeries, we left the NICU with a permanent shunt, directions on how not to freak out, and a very dismal prognosis on his development. We left with more pamphlets than a high school senior at a college fair.
We spent our entire summer in that hospital. Grady was so small that I could completely cover him with one hand. I wanted him to physically feel how badly I wanted to hold and kiss him always. I told everyone that I would not be carrying my baby out of the NICU in a car seat. He would be wrapped tightly to his mama until the very second I had to put him in the car, and that is exactly how we left — with Rylie’s hand in mine and her other hand in Josh’s.
Our biggest challenges were functioning as a whole while always being separated. We couldn’t hold Grady. I couldn’t be with Rylie like I was used to, and Josh was split between me at the NICU and Rylie at home. We tried to communicate on little or no sleep and still maintain life with an active almost 3-year-old girl who just wanted to bring that baby home! It was exhausting!
What songs or scriptures spoke to you in those days?
We sang every day to Grady: the doxology, the Donut Man, hymns, Bible verses. Rylie would Skype in and sing any “Annie” song that came to mind!
There is a Peruvian lullaby/folk tale that made me cry every time I hummed it. There are no words to the song, but the tale describes a village of mothers who come out at dusk to hold and rock their babies and sing together. A community of mothers, singing their babies to sleep. The NICU can be very lonely. The thought that we had a community, weaving a melody of prayers together and humming them to the Father is the picture I imagined as I hummed and sang to Grady.
I clung to the promise that this earth is just a shadow of what is to come, and that everything here will be made new.
Were there times in the NICU when you were afraid?
Fear never had enough time to set in in the NICU. Disappointment, yes, but never fear. We had a long struggle with his prognosis of hydrocephalus. We had to pray, and wait. The brain is such a mysterious and unique creation. We prayed for complete healing, we prayed that Grady would be who God intended him to be. I was never afraid in the NICU. It was the idea of the “future, and its unknown” after the NICU that brought the fear.
How did others reach out to you?
Friends sent notes, coffee cards (thank you Jesus!), meals, love and care for Rylie. People drove that little girl everywhere for me. The receptionist asked Rylie to sing “Tomorrow” every time she saw her. Nurses shared their faith stories and verses and had their churches praying for us, and they lobbied to lift the ban on children in the NICU so that Rylie could see her tiny brother.
Paul Calvin and Liz Stewart were so faithful in their prayers over us and their presence during Grady’s surgeries. To have warriors in prayer standing in front of you to lift you up is indescribable. When I look back to that time, I have a vision of our family cocooned in safety with thousands of people carrying us along.
We had nurses and staff who told me and Josh to make each other a priority because of the insanity that occurs within the NICU walls. We were cared for by others, enabling us to breathe and hold hands while we walked through the halls. We joked, we talked, we shared coffee. We stayed as “normal” as possible.
Talk about Grady’s diagnosis and his progress — and his personality.
This boy is heart-meltingly beautiful inside and out. He has a spirit that blesses me to even be his mama. He is diagnosed with triplegic cerebral palsy, which means both legs and his right arm exhibit deficiencies. His muscle development was extremely slow physically and required hours a week of therapy both in the home and out.
His progress is astounding. When we began therapy he was unable to drink from bottles well because his ability to suck, swallow and breathe was hindered by the cerebral palsy. He didn’t really know he had a right arm, and he was not able to sit up, stand or walk, but that boy could smile. Today, after weeks of HARD work this boy wants to keep up with the masses. He is mastering his walker, sits alone and pulls to stand. (He still cannot stand independently.) He loves to wrestle with Rylie! Despite the physical challenges, cognitively he’s right on track for his age. He is smart as can be and loves to play with cars, read books and play music.
We have recently begun a new approach to physical therapy, focusing on muscle strength training instead of mastering a specific activity. We have been blown away by his progress. This was an answer to prayer because I had researched this method a lot but assumed we needed to wait for Grady to grow more before we could tackle the new strategy.
How can the church body minister to your family, or to other families of children with special needs?
Don’t be afraid to Google anything related to his condition. Ask questions. Don’t ask in pity or sadness. Ask because you want to know and grow. We all have our quirks, disabilities, strengths and weaknesses, but most of us can hide them in public.
Understand if we miss a church service or function. Sometimes our weeks are so full of appointments that we need of a day of rest. Also, remember the siblings. Sometimes they have just as big a burden to carry as the child with “special needs,” and they shoulder the needs in their own quiet world.
Most important: When you see Grady trucking along in his walker, be blessed and encouraged that he is a walking, talking bundle of answered prayers. He is a testimony that all of you have been a part of.