July 29, 2014

Darn it, I am Human!

  People tell me all the time "you have strength like no other, almost super human like.  I could never do what you do".  I laugh and say "I don't think so, I'm a mom who loves her child".
  I stopped writing for a while after I got Sadie's diagnosis.  There was a couple of reasons why.  I was not sure if I would write about it or not but this is my outlet.  The reason I started this was to help me. If I could help others on their journey with a special needs child or to help others understand what it is like on this journey, well then that is even better.
  After I got Sadie's diagnosis I was so excited.  Finally, we have answers to questions that we have been asking since my 20 week ultrasound.  3 yrs of questions, all (well almost all) answered with one test.  Things make sense.  However, it was a let down at the same time.  I know we have seen her brain abnormalities on MRI's.  I know we have seen all her differences in real life. I know we have seen all her struggles with eating.  I know we have seen issues with her physical strength.  But without a confirmed name to it, then maybe all of this is just a really bad dream. I will wake up one day to a typical developing child.  One that will run to me and say my name and throw food at me that they don't like.  One that will steal her sisters toys and try on my high heels with dreams of wearing them some day.  But NO, this is my reality.  This is not a bad dream.  Sadie has a confirmed diagnosis.  In fact, she has 2 confirmed diagnoses.  She has Cornelia de Lange Syndrome and Pontine Tegmental Cap Dysplasia.  This will never change.  It is in her genes. I will never be able to say that they have been fixed like I can when I talk about her heart. I can't say that EVER about CdLS or PTCD.  I can't fix her genetic make up.  As a parent you are suppose to be able to fix things. I can't do it. I feel like I have failed her. I know that this was, and is, completely out of my hands, but its still the guilt of a parent.
  I have been grieving the child that I thought I would have.  I have a bad habit of thinking of Chloe and Aubrie at Sadie's age.  What they were doing, the milestones they were able to achieve.  They were so typical and I took it all for granted.  I think about what Sadie should be able to do.  I cry.  I cry a lot.  Sadie's teachers had to do some cognitive testing on her a few months ago so that she is able to start school in the fall. The results showed that she is at a 4 mo old developmentally.  A 4 MO OLD!  My 2 1/2 yr old is technically a 4 mo old.  Do you know how hard that is to admit to myself?  I'm not blind to the fact that she is super behind developmentally, but its different to hear it verbalized by someone else.  Its one of those of things that if its not said out loud then its not true.  But it is true and this is my reality.
  I also had won a battle and that shut me down for awhile.  What am I talking about?  When I first started on this journey with Sadie I was soooo emotional.  Highs and lows like you wouldn't believe.  Someone once explained it to me like this... having a special needs child is like fighting in a war.  While you're in a battle your adrenaline is pumping, you keep going and fighting, you have your eye on the prize, nothing can stop you.  But as in any war, there is a lull between battles when reality hits you as to what is actually going on and you have the down time to think about the rest of the war and it doesn't always look so hot.  I have been fighting the battle for a diagnosis for so long.  I wanted it, I knew I could achieve it, I fought with everything in me.  I won that battle.  Along with my reward was the reality of the rest of the war.
  Why I wasn't going to talk about this was because I don't want judgment that I don't except my daughter or the life I have been given. I do.  We all want things in life to be perfect and when they aren't, we grieve. We grieve for different things, in different ways when we are disappointed, we may not label it grieving, but that is what it is.  It doesn't mean that I am a depressed person.  I have my moments, and this is normal.  I use to hide these moments.  The more I talk to other moms (and dads) of children with special needs I realize that I am not alone.  I shouldn't be ashamed of my feelings and I shouldn't hide them.  This is me.  Pure and raw. I try to stay positive, but sometimes I get sad and fall down.  It's ok.  I'm HUMAN!  I will get up again (with God's help).

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