Tuesday, November 22, 2011

Day 22

I am thankful for encouragement from my daughter.
A bit of background for you-
She is a floppy baby.
She has nicknames from people who love her that are well intentioned and cute but at the same time it breaks my heart.
She has been slow to meet all of her milestones and it hurts to see how different she is from other babies her age. I try to think of her as fearfully and wonderfully made; she is perfect the way God made her. Her name is Faith, her middle name is Isabella which means "God as a promise" so I try to give myself comfort in having faith in God's promises. All in all I would be fine if she did have some different needs because obviously I have the background for it. I would be very accepting if I knew that I was doing everything in my power to help her to be whatever she is to the best of my ability. I don't think she or any other person needs to be fixed but I do think that everyone deserves to have the tools to reach the potential that God gave them. So whatever her abilities are I want to be the best mom and advocate that I can be so that she can grow up and be happy and faithful.

I have struggled though because I feel like a hypocrite because I’m not just a person with a background in working with special needs- I’m a mom and I’m protective. God told me that she’s in his hands and I should not worry. But I struggle with letting go and I compensate by being a mommy bear and demanding the best that anyone can give us in terms of resources. When Faith got denied for the infant and toddler program I was SO disappointed. I felt like I'm not doing everything I can for her so I don't accept their denial. They told me that she “averages out” Her fine motor skills are only in the 9th percentile, her gross motor skills are in the 26th and her cognitive abilities are up in the 65th percentile. You have to have 2/3 of these things that are less than the 25th percentile to qualify unless you have some underlying diagnosis and then you automatically qualify. Anyway I was notified that she doesn’t qualify and they told me they would track her. At that point I saw Faith who seems like at times she is 2+ months behind her peers physically and to say that I was disappointed is an understatement. I arranged for a second eval from a different specialist and in the meantime I just keep working with her and giving her the massages twice a day to stimulate her nerves and trying new things to see if something will click. It seems like she wants to stand up in my arms, and it seems like she wants to roll over, and she wants to eat baby food and be able to swallow it, she wants to grab things, she wants to play with my hair but her arms hang there and she doesn’t support her core to sit up in my arms when she’s on my hip. I celebrate her small victories and we keep on keeping on. Her smile lights up my world and even though we both get frustrated we just have to keep trying because that’s how life works. There’s always another day, there’s always something new and life will keep going with or without you so we might as well keep a good attitude and go with it.
Today was one of those days when you know you’re doing something right J
  • Today my baby played in the jumper and used her legs!
  • Today my baby ate 2 bites of baby food without losing it out of her mouth!
  • Today my baby laid on her back and lifted her legs up and grabbed her feet!
  • Today she rolled half way over!!!
  • Today she grabbed my hair!
Today was a BIG victory.

Today I felt for the first time like she was like any other baby and there were no painful or worrisome reminders that that my baby is SO different.
I even thought about canceling our 2nd eval with the infant and toddler program. I'll see how she does over the next couple of weeks and I will cancel if she continues to make such amazing progress.
 Today I was encouraged and I wasn’t only so proud of her new milestones I also celebrated that she does march to her own drum and it is ok!

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