Someone asked me this week what I found most difficult about having a child with Cri du Chat syndrome. I have to tell you, I had a really difficult time answering this. In the end, I think I just stumbled around and didn't really answer the question at all.
So I got to thinking...there are tons of difficult things about having a child with a disorder or any type of challenges. Some of them are:
She doesn't really dress herself. Not that she can't, but that she doesn't. Dressing herself is a really huge deal that generally takes about 2 hours of changing and struggling. Don't get me wrong, we practice on the weekends and when we have 2 hours to kill but to tell you the truth, we just don't have 2 hours each morning for her to dress herself...So that is difficult, having to dress the 11 year old when the 5 year old is dressing herself and knowing that it will probably be like this forever.
She doesn't really brush her own teeth, her own hair, bathe herself etc etc etc...See above reason. In addition, although she participates and helps to brush her teeth and hair and bathing and dressing, I have to also do it after her because she just doesn't have the ability to do it well enough on her own. And the difficult part is, this won't change. She can learn to do all of these things but an adult will always have to do it again to make sure that she doesn't have cavities or knots and that she clean enough.
She has fits. Even though they are much less than they have been in the past, fits can consist of biting, kicking, hitting, hair pulling, punching and generally hurting everyone around her. The difficult part is that they sometimes come on without warning...because someone looked at her wrong, spoke to her, because she was surprised, happy, miserable...you get the point.
She is pretty much always constipated, gagging, refluxing, taking medications or generally worrying her mother (that would be me) to death.
It is difficult to think that at any moment you could get a call that says she is sick and you will be in the hospital for the next few weeks with her. It is generally difficult to worry about her every moment of every day. It is just generally difficult to see her struggle and try so hard and fail a lot.
But then I got to thinking, I feel the same way about my normally developing 5 year old, just in different ways...
And I also feel that way about my 16 year old in different ways.
So I think that while having a child with cri du chat syndrome is rather difficult, it is also rewarding. Just like it is rewarding and difficult to have a normal developing child.
I don't think that there is a good answer to that questions because in reality, if I reflected on how difficult this was all of the time, I would drown in it instead of enjoying it.
And for me, having Hailey is enjoyable when it's not difficult! Now figure that one out!!