Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
I’ve known for awhile that this day was coming.
Syona got Botox injections a few months ago. The procedure helped to temporarily reduce the spasticity in some parts of Syona’s leg muscles. The results were incredible. Syona was sleeping better, stopped complaining about pain, started using her walker again and just felt so much looser. But I knew we would be lucky to get even three months out of the procedure. Syona has had a huge growth spurt and we got about two months of looseness.
Having two months of loose muscles motivated Syona to get moving, physically and mentally. She would ask to walk, she would request stretches and her body felt completely different. Her mood was better and she ate really well. Some of this motivation has lasted even though her muscles have tightened back up.
A few weeks ago she said “Mommy, walk.” This means that Syona wants to practice her walking. So I got on the ground with her, we got into position and I told her we could walk. Except it didn’t work. It was like I could see the wheels in her head turning, telling her muscles to move so she could swing her legs. But that message got lost somewhere in her body (that’s a really oversimplified way of how cerebral palsy impacts Syona’s functioning). And she kept trying for a good couple of minutes. I gave her some physical cues that I hoped would enable her to swing her leg and take a step. But her leg refused to move.
Syona looked right at me and, with a completely straight face said, “Legs not working.”
This was the first time she was able to articulate that she wanted her body to do something and it wouldn’t. And although I wanted to scoop her up, hug her tight and tell her that everything was going to be OK, I didn’t. Because, in her world, everything was OK. She was simply stating something she was able to recognize because a few short weeks earlier her body could translate her thoughts into action. Syona wasn’t upset or frustrated, she was just confused.
So I looked back at her and said, “I know, Syona. And that’s hard. But let’s try again and Mommy can help you more.” And I proceeded to use my hands to help her lift her leg and swing it forward—not because I wanted to help her walk but because she wanted to walk.
I know that at some point she will get frustrated because her body won’t do what she wants it to do. I can only hope that I can keep my cool in those situations and react with honesty and love, because that is what will help us get through these tough moments.
Have you experienced anything like this with your kids? What are your tips to helping deal with these tough moments?