It is soooooo unfair, this whole brain malformation, epilepsy, cerebral palsy crap. He didn't do anything to deserve any of this. And as far as I can tell neither did I or Lonnie, so why does Daniel have to deal with this?
Why does he have to struggle every day just to do what every one else takes for granted. Yes I know, I should be counting my blessings, it could be worse. And I do, but I feel like most of the time I'm in a bargaining match with someone/something.........OK I'll take the CP, just no seizures please. OK, I can handle that he won't talk, but can you please let his hands work to form signs? The one thing I can't handle are the seizures, because I have no way to fight them, I can't stop them, I don't know when they are coming. Talk about feeling so helpless. Its like watching some invisible monster beating on your child and making them writhe in pain and having absolutely no way to stop it. Knowing that each time it strikes it is damaging them more and more. It is all so vicious. Daniel hasn't been himself the last couple of days, he's been kind of quiet, not real active, but there is no sign that he is sick, no horribly elevated fevers or anything, just seems.......quiet. I on the other hand have been very uneasy. I get this way when Daniel gets his way because I get nervous, maybe something is wrong? Because Daniel is non-verbal he has no real way of saying HEY this doesn't feel good, or my head hurts, or whatever the ailment might be. But for whatever reason, I dug out from the drawer yesterday his Diastat medication............just had this feeling that we might be needing it sometime soon. Isn't' that weird? Then he had seizures today, and my first thought was please stop, please please please stop, I don't want my feeling to come true. I have even checked with the pharmacy to see how long its good for. No one should have to live in fear of frickin' seizures their whole life. Why cant' he just outgrow the seizures. There are other children that have the same brain malformation as Daniel and they don't have seizures. They don't have CP. Yes they have issues, but sometimes I wish I only had those issues to deal with. Granted that child's parents think its the end of the world too.........for them. They should count their blessings I say, and then I chuckle because I am sure people read this blog and say the same about us. Count your blessings. I guess everyone has their demons to fight. I am just not so sure that Daniel has the right person fight for him. Not sure I can fight this battle anymore, let alone win it.
Well we're in the count down phase to Daniel's 2 yr birthday. I don't know if the word I should use is "bitter-sweet". There is happiness that Daniel is two years old, and then there is an abundance of sadness that comes along with it. I am very thankful for Daniel, do NOT get me wrong. We have said many times, if someone asked if we'd change what and who Daniel is to get rid of his illness, we say no, not if it would change WHO Daniel is now. Because Daniel is almost always happy, he is Daniel, and he makes EVERYONE, and I mean everyone smile. I know it sounds corny, and as corny as it may be....it is the Truth.
Some people will say "be thankful for what you've gotten", and we are. But there is that part of me that is fearful of Daniel's happiness when he realizes that he is different from other people, and that the people out there are mean, mean people sometimes. That they are not as accepting as his family and friends. That they might stare and treat him different then others. Little do they know, if he were given enough time to show you, you would see that he is a very mature and intelligent little boy. And what is sad, is that people are in such a rush that they don't' give him enough time. Daniel has a diagnosis that makes it hard for him to quickly respond. But you know that what you ask of him is being processed, you just need patience. You might say "hi" to him, give him 30 seconds or so, and he'll respond with his "hi" but he is smiling while he is trying to process how to get his mouth to move the way it needs to. Some people will say "it could be worse", and you're right it could be.
I hope you will help us and remember to celebrate Daniel's life on his second birthday in 8 days!
1 comment:
"I hope that you don't let yourself fall for the comparison of your feelings, complex as they must be, with those of any other family. You are entitled to have both joy and grief, excitement and worry, hope and fear. The fact that "it could be worse" or "it could be better" is meaningless, because the reality of your family's lives is what you all are living. And no one else can know that or be so foolish to judge it."
Melanie,
This was a comment posted on my blog that I thought was really helpful. It was written in response to another comment reminding me that "it could be worse."
It's one of those things that it's okay for ME to tell myself, but I don't really want to hear it from other people. Especially people who don't know what I am going through.
Sure, it could always be worse. It could be better too.
Billie
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