Wednesday, May 7, 2014

Letter #23: December 14, 2010

Don’t judge me.
I feel guilty enough for what is going on with my daughter, even though I’m told it’s not my fault.  I have terrible thoughts and questions that race through my head on bad days like “What’s wrong with you?  Why can’t you do this or that?  Why us?  I just want to have a normal life.”  I can’t even imagine how much more difficult this is going to get. 

Cameron has 5 hours of therapies at the home a week.  All I want to do during that time is relax or housework.  But I never can.  There is a constant guilt coming across me either from myself or the therapists.  I’m 7 months pregnant and carrying 45 lbs of baby and Cameron combined constantly and playing on the ground incessantly.  All I want to do is have someone else play and work with my child for a while.  I know that sounds terrible.  At these therapies, I end up on the ground trying to motivate Cameron or keep her calm. 

I can’t even recall the last time we went through a day without someone asking “Why does Cameron do this?  Can she do this?  Does she always do that?” Or giving me advice like “work on this.”  What do you think I do all day?   She’s supposed to wear a patch over her eye for 3 hours, wear her orthodics, SPIO vest, and thumb splints.  People keep telling me to just enjoy my child.  How am I supposed to do that with all this shit she has to wear and she hates it.  Why does she have to work so much harder than everyone else?  Why will she always have to?  And will it result in a normal life for her? 

This afternoon, I went in her room 20 minutes after I put her down for a nap only to find her sleeping in a puddle of puke.  She can’t even sit up to get herself out of the puke. 

I know people do have it worse than us, but I’m so sick of people telling me their “sob” stories of how they were sleep deprived with twins, or their child is a picky eater, blah blah blah.  Those are stages people went through for maybe a couple months.  My daughter is 21 months old and we’ve been stuck at 6 months old for 15 months and who knows how much longer.  My child cannot sit and play without falling over after 10 minutes.  And when she does fall on her side, she cannot push back up.  My child does not move.  She might roll over, but does not move forward or backwards by crawling or walking.  I constantly have to be vigilant of my child.  She has no independence and neither do I.  I still have to feed my child.  She doesn’t talk or even indicate what she wants by pointing.  It’s a guessing game.  She’s 21 months old and we still have a 6 month old.  I don’t want to hear about how rough your life is. 

I called the physiatrist’s office 2 days ago and left a message, but I still have not heard back.  When are we going to find out? 
What’s it going to be like when the baby arrives?  How is Cameron going to react?  Are people going to give the baby more attention than Cameron?  Are people going to give Cameron more attention than the baby?  Is this baby going to be okay b/c we will have to give Cameron so much more attention?  What’s it going to be like when (hopefully when) this baby develops normally?  What is the baby has some fluke genetic disorder too?  God, please get us through this.  I just can’t imagine now what it’s like to have a typical child.  I can’t imagine how much easier life it.  

No comments:

Post a Comment