A day of fear

Today, while in Nisarga’s favorite exercise room, I had Nisarga in a wheelchair, while I turned around and made space for him to sit in the pool of balls (a sensory stimulus exercise he loves). I must have turned my back on him for maybe a minute. Next thing I know, he had fallen head first to the floor behind me.

There was no visible sign of injury, and the crying was normal after a head bump. The doctors didn’t seem overly concerned by what had happened, but I am out of my mind with fear. Not fear that he has been injured. He had been cranky since waking up this morning, but nothing added after the fall. I am terrified because it is dawning on me how big the problem really is.

Nisarga was sitting cross legged in the wheelchair. Very stable. He even goes down slopes like this without losing balance. Yet he had managed a fall that would actually require him to make serious effort to achieve. He probably tried to reach out to me, or the activity in his eagerness, and fell out of the chair instead of losing balance (which would be impossible in the position he was sitting in).

All day, his balance has been very bad. He has stopped sitting spontaneously as well and most of the time doesn’t even sit when told. This is a definite regression and it is not today alone – which could be explained as a bad day, upset stomach or something.

This hospital seems to be so good, yet the results we are getting are similar to the physiotherapy. He hasn’t really learned anything new, he has forgotten things he used to do, and any exercises make him stiff. The effect of the medication too is unclear. Just like the previous times when I used to interpret any change in behavior very optimistically, only to realize later that there was no concrete change. The Feldenkrais sessions too lead to very confusing outcomes at times these days – is it because I have run out of insight, or is it because of two different ways of learning to move interfering with each other is tough to say, but I no longer get a clear understanding of what’s going on with him.

Frankly, I am depressed today. I don’t know why he is regressing or whether his condition is getting worse, or it is a result of exercise or medicine or a combination of any of these. My hunch is that he is extremely sensitive to triggers that make him rigid, and the Feldenkrais method helps us work around them, but the rigidity of the movements of his physiotherapy trigger it. In the sense, he isn’t really able to sit like a normal child, but we had workarounds that let him sit at will, however he could. Now that the physiotherapy is trying to make him sit in specific ways he can’t, he can’t do that or the workarounds because of the rigidity. But I may be wrong.

I am at the lowest point in terms of optimism in a long long while. I have no confidence in what I am doing with him, I have no confidence in what the doctors are doing with him, I can no longer even count on abilities we took for granted so far.

On a personal note, the relationship with the husband is deteriorating, and I had been hoping to become independent and move out. One big deterrent was the lack of mobility for Nisarga. It is difficult to go shopping if you can’t even get the child to sit a minute while you take money out of your purse or put groceries in a bag. How does one live independently with added expenses AND not even have basic mobility to count on?

And now that fear is magnified a hundredfold. Forget putting the child down to do something, the child isn’t even save if I turn my back while he is in a wheelchair!

Things are looking really overwhelming. I have no choice but to move on, but I for the first time in my life I have no idea what I am moving toward other than putting one foot ahead of the other.