Anna has become quite a fan of food. She wants to eat as soon as she gets up in the morning, right before she goes to bed at night and pretty much all the time in between. It is so crazy to think there was a time not too long ago that she wouldn't eat. It is just crazy how things can change. I've been having a rough week emotionally this week. I do not know if it is hormones or just the ebb and flow of grief. I have shed tears on most days again and that is something I had not done in awhile. I think about Anna's upcoming hospital stay and another round of general anesthesia for her MRI ( I think this is her 6th or 7th time to be under general anesthesia and she is not even 3), her eye appointment and likely needing glasses or a patch or eye surgery, her worsening gait and probable need for orthotics, her continued seizures, her upcoming speech evaluation where they will tell me how behind she is... I just get overwhelmed sometimes. And I know, I know there are people who would give anything to be in our shoes, to have a kid who walks and talks, but it is still so hard sometimes. Sometimes it just comes out of nowhere and hits me like it is all new again. This has been one of those weeks. But then Anna walks in the room. She is smiling and laughing and she just changes everything. It is then that I realize that I am the one with the problem, not her. She is fine just like she is. She doesn't care that she talks funny, walks funny, has a lazy eye and some seizures. She is just happy to be 2 and alive and doing everything she can do. I wish I could see her life through her eyes so that I wouldn't be tempted to worry about how cruel the world can be and worry about how people will accept her as she gets older. She doesn't care about this terrible palsy and I so wish I could be there too...
I just wrote a post about the cycles of grief that we often come back to when you have a child with special needs...
ReplyDeletehttp://livingwithspecialneeds.com/index.php/2010/thecyclesofgrief/
I know how you feel. It's amazing to me that we can be at the acceptance stage one day and the next it's nothing but grief and anger.
It is hard. There's not much that makes it easier, no matter how severe their disability is. It seems like there is always a battle or an important decision to be made. Guilt to get over.
I've seen other parents blog about how their child with special needs is like any other kid, and I see what they mean. But we'd be fooling ourselves in thinking it would be just as hard if our kids were all "typical".
It's a valid feeling. But you guys are doing a great job!
Hugs!