Enough?

How much is enough? How many hours of PT and OT? How much respit? How much equipment? When we got the diagnosis this in one of the things that was right in the front of my mind. I wanted to go as long as we could before having to advocate and fight. At that time, the idea of a severely disabled child seemed so far off, and in some ways it still feels that way, in others it doesn’t. Claire is doing very well right now. By very well I mean that she wakes up alive in the morning and is present throughout the day. Sure there is a lot of screaming and crying and she isn’t doing any brand new things that are mind blowing (like standing up and walking away) but she is doing small things that I had forgotten to hope for. With that said, it doesn’t seem all that broken. But then we talk to other families, learn what is working for them and a mean little voice creeps into my head, maybe we should be doing that too? Why is it that being content with this is so hard?!?!?!? It is certainly guilt and fear driven, what if there is something that I could have done more of that would have made a difference? Well, I guess we will just never know. I am mentally psyching myself up, today we go over the hill and through the city to Children’s Hospital Oakland, to Katie’s Clinic for Rett Syndrome. I had hoped to not go this year, but with the creepy seizure or neurological craziness that is going on, I called and they were able to get us in. These people are the experts, they see lots of girls and know all the stuff to recommend. They know what kind of equipment might help, what type of therapy to do and other stuff that I wouldn’t know. We normally get a report a few weeks later with a short list of things to do. But honestly, I don’t want a list, I would like to be done please. I would like to hear that I have done all that is humanly possible and that I can just enjoy Claire the way she is and not worry about the future. Is that too much to ask? I know that won’t happen, at the minimum I see a long EEG in our future, maybe some seizure medication. Perhaps somethings for scoliosis and advice on getting BMI up. So here goes, off I go to walk that fine line, advocating and getting what Claire needs, but not getting greedy and trying to get things for her just because we can, enjoying her for all the joy that she is while grieving that we are going to a hospital because her body doesn’t work right, and of coarse getting some ice cream along the way.

5 thoughts on “Enough?

  1. Well said. I know exactly how you feel. When I read about ABA, aquatic therapy, special diets, etc. guilt creeps in my head. Should Abby be doing that, too? But we can't do everything. Our girls can't do everything. There is not enough time in the day. I hope Claire has a great appointment and you both enjoy your well deserved ice cream!

  2. nolan's mom is sooo cool! oh wait thats me!
    hee hee.
    Claire and Chloe's mom is the coolest though.
    great to see you guys today! even if I did butcher my order.

  3. I hope the appointment went well. I remember right after Annie's diagnosis we saw a developmental ped that specialized in autism, he told us that we needed therapy but to make sure there was a balance, our marriage needed time our other children needed time and Annie needed a break, I didn't get it at the time but I understand his point now. Therapy is important but what's more important is a balance in home, relationships, work and fun but you already know that! Finding that balance is, for me, the hard part. There's always someone doing more. HUGS!

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