I love the innocence of toddlers. My friend Kelli posted a sweet video of Miss Rylie dancing around the living room in her cast and diaper this week. William perched beside me watching Rylie. He giggled, covered his mouth and said she is so naked! I could not stop smiling! Both are covered in a plaster and fiberglass life vest and yet they see themselves as naked. They are officially cast blind!
We have an influx of new families still very new to this journey. I have been trying very hard to take myself back to the new moments of diagnosis and first cast. It is so cavalier of me to say it will all be fine & don't worry, when 3 years ago I was an absolute basket case. To assure you I am not the robot I may come across now, I wanted to share a little bit of the journal from Cast 1.
Cast Day #1:
Chad and I drove to Chicago the night before Williams first cast. We opted to stay at a hotel near the hospital. It wasn't the best hotel for our family that night, but we were together with our grief and anxiety rather than inflicting it on innocent family members. Once we were checked into our room we chose to visit Bar Louie in Oak park and try to relax. Dinner was nice, we love Bar Louie & its casual atmosphere. When dinner was complete it was time to head back to the hotel. When we returned to the hotel, we gave our little angel his last bath for what would be a 12 week stretch in cast, clothed him in comfortable new jammies and tried to turn off the screaming in our heads as we waited for morning. We ended up not sleeping at all the night before. Some of it was the paper thin walls and the couple reminiscing all night in the room next door, but more of it was the anxious unknown that was to come.
We opted to leave the hotel at around 5:15 a.m. By 5:45 a.m. we were in the parking lot of Shriner’s Hosptial for Children, Chicago. A friend had encouraged us to take William’s stroller in as he would be awkward to hold after casting. Chad and I wheeled our tiny 10 month old in and were escorted to the same day surgery waiting area. A very sweet nurse came to greet us shortly after arrival. She introduced herself as Gwen and told us she would be with us through the day. William was a so sweet and snuggly. He allowed Gwen to get his vitals and cooed at her in his sweet baby voice. As cast time approached we were greeted by residents, anesthesiology and research assistants. Since William had already had an x-ray taken less than 2 weeks prior we were able to skip that portion of this trip. 8:00 a.m. was now here and it was time to be taken to the surgery holding room. We were allowed to carry William with us as they wheeled his crib into the holding room.
Chad and I put on sterile gowns, booties and hair nets and joined his bed in the holding room. Once in the room, William
was greeted by the Pre-op nurse and fitted for his undershirt. He was once again seen by the anesthesiologist and they gave him liquid versed to ease his separation anxiety. Where was my versed? I think I deserve to forget them taking him from me. I sat in a chair with my husband beside me and sobbed as I rocked and sang William to sleep. The Operating Room staff was so kind and agreed to carry him asleep into the OR. As I passed him over, I knew things were about to change for us, yet still hopeful this would be a change for the best in William’s future. Sobs left my chest as I said goodbye for now to my sweet little man.
Waiting has to be the hardest, short of handing your child to someone you don’t really know. We sat in the same waiting area that greeted us upon arrival and waited for Dr. Sturm to come tell us William was finished.
45 minutes after William entered the OR, Dr. Sturm and Linda came out to update us on his progress. William was out of
surgery, he was in the PACU, Post Anesthesia Care Unit, and he was doing remarkably. They were able to get his
little spine to 25 degrees in cast, a 42 degree correction from where he started. Dr. Sturm was delighted with
the progress and said they would come and get us when he was ready to come back to the room, he would see us in 12 weeks if we had no complications. It’s funny how time stands still when you are waiting for something to happen.
Although only about 10 minutes had passed, it seemed a lifetime. I heard the cry before anyone had to come and
retrieve us. I peeked around the corner to same day surgery and Gwen said “you know it’s him momma, come on back.” There he was, my beautiful baby boy, mad as hell. Gwen said it’s ok, he just wants you mom. She helped put him in my
arms. He was so heavy and awkward to hold. I was afraid every move I made was going to hurt him. Gwen assured us he
was just mad and that he would cry off the anesthesia and get back to his old self in no time.
So many milestones have to be reached before you can leave the hospital. He has to drink, pee and get trimmed/ taped
before we can load up and head out. It took close to an hour and half before he was at a place where Gwen could start
the taping process. William fought her the entire time. She just kept taping and saying is that all you have for me. I am not scared of you William. Come on big guy, show me your fight. She is the QUEEN OF CASTING!
Taping and trimming finally complete, it was time to hit the road to our new lives. The 6 hour trip home was terrifying and liberating at the same time. This was our life and we might as well get used to living it. William slept and cried periodically throughout the journey. We stopped about halfway home and changed his diaper with a fear and care I haven’t had since he was a newborn. We quickly buckled him back in his seat and pushed through the last
three hours of our trek. Cody was at my sister’s house, so that would be our first stop. Maggie and Peter had dinner ready for us when we finally pulled in at close to 6 p.m. Exhausted we carried him into the house and handed him to his beloved
godmother and aunt. By this time, William was extremely swollen. His face looked as if he had been beaten. My beautiful sister hugged him and kissed him as little tears trickled down her cheeks. This was the first and last time I saw my sister cry over his cast. She is strength in a storm, but even she caved at first look of William post cast. Bedtime was nerve racking. William was still in a pack and play in our room so we placed a pillow under his sweet head and let him rest as peacefully as he could. It was tough to see him struggle with everything from rolling around to breathing. He was getting used to
breathing with 25% of his weight coming from a cast on his chest. My friend had prepared us for this guppy breathing, but it is still horrifying when you hear it for the first time. Once he drifted off to sleep the adrenaline wore off and I gave into the grief. I cried for the baby that was gone, the loss of mobility, our loss of normalcy. I cried out of fear of the unknown and fear of the known. I cried until the tears were gone and sleep took over. William’s sleep was restless to say the least. He
was unable to roll and that was hard on both of us. I was convinced this was our new normal so I would help him get into a position where he could fall back to sleep. We alternated Tylenol and Motrin most of the night. I was diligent to make sure he was comfortable. As morning came I was still exhausted and scared. I needed to shower and in a fit of necessity I called my mom who immediately came over. She stepped in and said go shower, we are ok. I let the water take over my world and once again the tears began to pour. When I came out of the shower I was resolved that I would not cry anymore that day. I emerged, a new women willing myself to be strong for whatever the day would bring.
Day one had it’s trying times, but I am proud to report, my mom had William standing at his activity table playing with the little pages on the book when I came out of my shower. Throughout the day things started to just start happening.
I would prop him with pillows so he could play with toys. I encouraged him to try to crawl when he could and would help him pull up to the couch so he could cruise. Within the next few days mobility returned and he was starting to get used to what first was a burden for his little body.
We are 12 casts and 2.5 years past this moment. My journals of cast changes now are brief updates. They usually start with he walked himself in and end with he walked himself out. There were hiccups and headaches on the road but no more than raising my child without a cast. It is new and you need to mourn, prepare, and feel however you need to feel. There comes a time when you will tell yourself...enough. That is when it is time to move forward and accept. Not a one of us can say we don't visit the dark space every once in a while on the journey, at that point though, our kids have already figured this thing out. More often than not it is the moments like Rylie and William's, "I'm so naked!" that will remind me they are cast blind. I think it gives us permission to be cast blind too.
Until Next Time, Keep it Curvy~
Catie(Scoliosis Sucks) D.