It has been close to a year since we received the diagnosis of cerebral palsy. I thought I was getting used to everything "special". The countless appointments with doctors, the many trips to the emergency room, and even calling the building where Sophie receives therapy "our second home". I guess I had not given the "W" word any thought because we are just taking it "one step at a time", "living in the moment", you get the idea... I guess I always thought that I would keep Sophie in her stroller until she was 5 years old and when I pictured her going to developmental pre-school (which happens at 3yrs old in Florida), I thought maybe she would be walking or maybe I would bring her there and "somebody" would take really good care of attending to her needs. I really completely forgot that she cannot stay in one place for hours without anyone moving or carrying her around the way we do it at home. So when I heard the "W" word... GULP... it really took me by surprise. We are transferring her to a new office of early development and the kind lady who was assigned to our case was asking about our needs for equipment. She kindly asked if Sophie had a wheelchair. Right away I felt a knot inside my throat and just told her that no, we didn't need one to which she responded that we would need one next year for Sophie to get around when she goes to pre-school. I guess she must have seen my face (surprised, scared, who knows?) because then she said, don't worry, we still have time... I guess that's it. Sophie is nowhere near walking. She just started rolling over (ocassionally) a few weeks ago. Unless someone has a magic walking wand or something, we may need a wheelchair. Yikes! I guess my daughter will be riding a wheelchair...
Now... I will forget all of the above and just focus on today, because that is what we do, we take it one day at a time. When that moment comes, I will be so ready, and it will not be a big deal. We will make it an event, Sophie will have a very cool motor chair and we will decorate it with all kinds of cute stuff to make it less medical looking. We will be fine and she will love it. We will be so ready for this next year.... but not today.
I totally get you on this post. Sometimes it is so hard to accept reality. You want something more or different. I know that whatever happens you will make the right decision for her needs at that time. How did it go in CA? I need to update Hummy's page. So much is going on...I just need to find the time to do it. I have missed chatting with you.
ReplyDeleteThis sounds like such a painful word for you. Every one of us has some word that causes us pain. I'm sorry that this is yours. BTW, a few years ago, my daughter who is now 33, wanted a wheelchair or a walker. She had fallen (she has essential tremors) and was afraid she would fall again. I wasn't ready to give in and put her request on fb. Everyone who knows my daughter wrote: give her one and put a bell on it, streamers on the back, balloons, horns....we received over 48 pieces of advice if we decided to go that route. It turned out my daughter didn't need it, but I could visualize the fun we could've had if things had gone differently. It sounds like you plan the same type of coming out party. And you go! I found your post on Love That Max--in case you are keeping track (my post was #49). Do you have a FB page? If so, let me know and I'll LIKE it. I love supporting my fellow bloggers. Your comments won't let me list my professional page, so I'm from Out One Ear (facebook) and http://outoneear.com (blog).
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