I came across this picture a few weeks ago, and was very inspired by it. It was something I needed to read and be reminded of. It refers to positive thinking. It refers to not giving up, even if the odds are against you. Most importantly, it refers to being a role model to your child. What you believe is what your child most likely will grow to believe. That is a pretty powerful responsibility as a mother. One that I needed a little brushing up on…
Rett Syndrome challenges me and my ‘positive thinking’ every single day. This is an understatement. Where I used to naturally find myself always seeing the glass half full, I have to admit… doing that now is something that is extremely difficult for me to do. I needed the reminder that what I do as Claire’s mother, really does matter. Every bit of it. And she is taking every little (and big) bit in.
Tonight at dinner, after seeing this picture, whether or not I believed it at the time, I told Claire that one day she would walk. She was in the middle of chewing her food, and she looked me straight in the eyes and paused. I said it again, “Claire… You are gonna walk one day… You are!!” and she continued to look at me, and then gave me the biggest smile. She understood me. Every single word. Her smile was huge, and her eyes were of purpose.
Claire was the one who taught me something here. And I will never forget it. She and I are together, nonstop. Her ears and eyes are on me… soaking me up “like a sponge” as they call it. She may be nonverbal, but she gets it. (another blog will be on nonverbal children and what they ‘understand’ … but another day) 🙂
Bottom line… one of my biggest wishes for Claire, is for her to walk independently. My 6 year old son asked me, “Mom… if Claire walks one day, what will happen?” I told him, “Nolan… we are gonna throw a party. One big party to celebrate because she’s worked so hard to get to this point.” And it’s true. This would be one momentous occasion that we will celebrate, for sure.
She will be “2” on Easter Sunday. She has physical therapy 3x a week, and has just started aquatic therapy (these are in addition to her occupational and speech therapies… again, a post for another day). What she does in therapy, Sean and I try to replicate in our home setting. We try ‘hip helpers’ (aka: shorts that she wears to help keep her feet together), obstacle courses, different walkers, gait trainers and standers… She’s gone to the Cleveland Clinic mobility clinic to try out different types of equipment in addition to her therapies, and was fitted for a power wheelchair. Whether or not she will be able to walk, we want to give her as much independence as possible. So we are exploring every single option. We get her toys that help motivate her… we get the toys she uses in therapies to try and create similar obstacle courses at home… we try and create ‘vertical space’ at home. Last week, she was fitted for orthotic shoe inserts. Depending on how she does with this, we may or may not proceed with getting her AFOs (ankle, foot, orthotics).
It’s hard to sum up her therapies and what she’s doing, but these pictures and videos at least help paint the picture.
As for her overall mobility… we will continue to try and reach this goal. And on those days where I’m not overly optimistic myself, or just ‘having one of those days’, I’ll remember the picture above that was first mentioned, and I’ll keep those thoughts to myself. Because there is a little girl who is looking up at me, every ‘step’ of the way… one strong and beautiful little girl who will be ‘2’ in a few days. 🙂
Claire attended the Mobility Clinic at Cleveland Clinic to be ‘fitted’ for a wheelchair. In a matter of minutes, she learned to turn this power wheel chair on her own using her head to apply pressure to the head rest.
Claire’s physical therapist is using a trapeze to suspend one of Claire’s favorite toys in air to give Claire more confidence with her vertical space. It’s working – she takes her 1st steps (as I help Nolan with his homework)!