We have a influx of new families in the Lucky Cast Club the past few weeks. New families mean new little ones starting their casting journey. Such a mix of emotions. I am grateful our hospitals respect our group enough to share the Lucky Cast Club. It is also very nice to know they are at centers with skilled and determined Orthopedic Surgeons who care enough to give these families HOPE. Each of us who started this amazing group have been down the roadblock road and fought hard to have our kids where they are. We have SHOUTED from the rooftops so others would know there is treatment available and know our surgeons are doing the same. The families are starting a journey with destination undetermined. They have a clear start and yet no definitive finish date. It doesn't take much to put myself back in their shoes, although I have to say those shoes no longer fit my warn and tired feet.
I am asked often when William will move to a brace. Although we do not know the answer to this inquiry, we do know his time is limited in comparison to our original 3 years. Our last best estimate was 3 months ago at 18-24 more months. Now it is 15-21 months. Most people would be counting down those months and preparing for a magical finish. I realize, once again, I am not most people. The end petrifies me. I am scared to leave what we know and move back to the world of unknowns.
In the beginning, the first 8 or so casts, I would work myself into a frenzy, shut myself off from others, cling to my cast free little man for dear life. I would mourn the passing of months and get lost in the things we were missing. I would feel. At some point in the process I stopped feeling. It seems so cruel when I read it back. I stopped feeling. I can only assume I began to accept our path and understand the fortune we have. My childs spine is safe and we know how to handle the cast. William doesn't notice or acknowledge his cast exists beyond the time in the hospital. He fears the Versed far more than the procedure. In a conversation with a friend last night I acknowledged my feelings towards moving forward. It will mean I must feel again. I will once again be cast into the unknown and that to me is far more terrifying. Although I feel like a brick at times, I like the comfort of familiar. The "Not Feeling" is such a contrast from where I started 3 years ago.
My advice to our new families... find your balance. My sister used to tell me I was getting lost in the process. At the time I thought her words cold and callous. Now I see how much better I would have been to heed my sisters advice early on. Scoliosis only has as much power as we give it. No it is not healthy to not feel and as I spent time this evening speaking to a new friend facing first cast with numbers very similar to Williams I was able to put myself in her shoes. It is part of the process to feel the fear, don't let it overtake you. It is OK to mourn your loss and take time to adjust to your new normal. Don't allow yourself to get lost in it. Come to the process with time as your goal and rejoice the milestones. Each cast is 8, 10, 12 more weeks you have given your child of safe growth. This is a marathon and not a sprint. Don't allow standstills and set-backs to sway your determination. You have to sometimes move back to gain momentum and move forward. Lean on others when you need support. Your friends, family & Lucky Cast Club family are there to carry you when you feel you cannot walk. Summer...it is a witch! Keep in mind summer is only a few short months in a 12 month cycle! Try not to project your discomfort with the cast on your little super hero! This was my husbands best advice. I would wallow in grief and apologize to William for what he was going through. My husband would say he doesn't miss what he didn't know. Ahhh so true. Final for now, no matter how pitiful they look on cast day...they always bounce back and so will you. Grief is a process, take your time and work through the steps...the final step, acceptance.
Until next time keep it CuRvY~
Catie(Scoliosis Sucks) D.