It’s interesting how a days events can dramatically change your future. Penny had a PT appointment today for torticollis (when one side of the neck is tighter than the other so they lean heavily to one side) and for the flattening of her skull. She has mild torticollis and moderate plagiocephaly (flattening of the scull). The Pt was great and gave us some things to do and tons of info. I left feeling armed with the things I needed to help Penny and a resolve to put my efforts into helping her with that. And I went to Ben’s 6 month check up at Shriners for Ben. Little did I know that Penny's issues were nothing compared to what we'd be facing with Ben. Here’s Spencer’s recap on the doctor visit and details there:
Today we had one of Ben’s 6 month check-ups for his Talipes (club feet). We were expecting the usual short routine checkups and to be advised to continue his regular treatment. While the outside of Ben’s feet have shown great progress and have appeared to be normal, today’s x-rays revealed a different story. The bone and muscular orientation in Ben’s feet still shows significant deformation. Ben had both legs casted today (see attached pic) and will have a series of casts followed by surgery (Tenotomy) and another set of casts. This unexpected change has proven to be very difficult (both physically and emotionally) for Ben and our family.
I was totally shocked when the doctor told us he would need casts. I never ever thought we would go back to that. We’ve worn the braces pretty good and I just didn’t think we’d have a problem. My heart sank. We went into the room that was so familiar to me from Ben’s casting when he was younger. I remembered bathing him between casts in the little sink in the corner. This time Penny was on my lap and I was reading Parker a story (we wouldn’t have brought all the kids had we have known this was not going to be the routine visit we thought it would be). Parker picked out the color for the casts since Ben didn’t show a preference. Red of course- Parker’s favorite color. Good for Christmas too. Four of the doctors at Shriners gathered around Ben and begun the casting process. True to form Ben was cooperative and mellow. He wasn’t really sure what was going on and just watched the casts get put on. I knew though and my heart was breaking. This little boy who took SO long to walk now LOVES to walk and run. It brings him so much joy to dance, to move, to wander off away from me. It makes me crazy sometimes but it brings him joy, independence, purpose and I LOVE to watch him move. And these casts were going to take that all away. I knew that and it was breaking my heart. When the casts were finished Ben sat there for a moment and then tried to move his leg. Those things are heavy. He has probably added 10 lbs to his weight because of them and so he couldn’t really move his leg. Ben looked up and Spencer and I and with the sweetest little whimper simply said “off” My heart BROKE. I had to turn around and try to gather my emotions because I was crying so hard. I wasn’t so emotional when he was little. I dealt with it better. But this was different, casts on a 2 year old are so diferent than casts on a 2 week old. We carried Ben out. He wasn’t supposed to put any weight on the casts for awhile. We got something to eat. I took the kids upstairs to the toys at Shriners and luckily Penny slept so I could push Ben around on the bikes and trucks they have there. We had a good time. I had a heavy heart. Ben had a worried look. Parker was just wanting to race in the trucks.
Ben fell asleep in the car on the way home so I put him in his bed when we got home but he didn’t go back to sleep . I really had wanted him to nap. I needed the time to recoop, to think about how we would deal with this, how I would carry two babies, how I would meet the needs of a 2 month old, a 2 year old who can’t walk or move and a 4 year old who is struggling and in need of some attention. But Ben didn’t sleep so I got him up out of the crib. We sat for a minute and then he tried to walk and I lost it. To see him struggle to move, not even being able to crawl was too much for me. To see in his sweet face full of confusion and frustration and yet not anger, was so overwhelmingly emotional to me. I tried to contain my emotion but I couldn’t and before I knew it Parker was beside me giving me a hug. And I held Ben for a long time. He kept looking at me with these sweet eyes like “it’s okay mom, we’re going to be okay” And amidst a very emotional and hard time there was this sense of beauty and peace that I can only attribute to the sweetness of children and the peace of the Lord.
The rest of the afternoon was spent playing with toys on the ground and moving Ben from place to place. Parker shone as he helped his brother, playing toys with him and reading him stories, which made me even more emotional! It’s interesting how our trials teach us, how children teach us. Ben’s attitude is beautiful. He has not thrown fits or seemed too upset. Yes, he is sad he can’t move, but he’s doing his best, he’s giving me smiles and he’s trying. He has this feeling about him that things will be okay and it calms me. I am so sad for my little boy to not be able to run and dance and move, the things that truly bring this little boy so much joy, but I am grateful for what this is teaching me. I am grateful once again for Shriners Hospital and what it does for children. Spending time there is always a lesson in humility and gratitude. I am thankful for a husband who was worthy and ready to give Ben a priesthood blessing right before he was cast. I am grateful for a sweet little girl that Ben can sit next to and play by. I am grateful for my oldest son who is so aware of my feelings and is trying so hard to be good. I am grateful for what God teaches me as a mother. And I am grateful for the beautiful, pure smiles of a little boy in bright red casts.