Thursday, October 29, 2009

The ramblings of an atypical mom loving an atypical son

There's a difference, I think, between loving a "typical" child and and "atypical" child.  Not saying I love my baby any more but the love is different.  I think we (mom's of special babies) have to love our children through a life in a world that isn't quite ready to deal with their differences.  I wasn't sure that motherhood was my calling.  I didn't think I'd be good at it (I'm selfish and set in my ways).  But I'm learning.  Noah's a pretty good teacher.

Some people are uncomfortable talking about Noah (sometimes I think it'd be helpful to take a class:  Doctor Speak 101 or Nerves of Steal 460) or seeing him suffer.  It's tough, I know that.  I watch it all day long.  Watch him suffer and squirm through seizures.  I watch him cry and howl and I try to hold him as tightly as I can to comfort him but it doesn't help really.  He just looks terrified.  His eyes get so big and he screams.  It's awful.  

Now I understand why his arms and legs get so stiff and won't bend.  Duh!  Cerebral Palsy.   I thought maybe he didn't want to change his clothes, do PT, or be held.  Now I know it's totally involuntary and he just may be as frustrated as I about the whole thing.  So if he's not seizing he's battling his muscles for control of which he pretty much has none. 

I'm angry today.  I'm angry that I allowed Noah to get vaccinated.  I'm angry that I allowed a surgeon to operate on Noah and he lost so much blood it caused irreparable brain damage.  

As I go through the stages of grief (I do mourn for the loss of a life I had planned for Noah; a great life full of "typical" things and "typical" dreams), I think I'm stuck on a few.

Grief Limbo.  

I'm somewhere between denial ("you never know, things could still turn out okay"), anger("why us?  it's not fair to punish such an innocent soul!"), and bargaining ("maybe if we can just start that treatment, everything will turn out okay.").  

But today (and yesterday) I'm just angry.



  1. It's important to feel all those emotions. I know it sounds cliche...but I believe deeply that our children are changing us. And as we learn to navigate all this insanity...we are growing. Some of the most beautiful...most quality...people I have ever met in my life are other IS families.

    And you're right. As a mommy of two typical kiddos...and one atypical...the love I have for each them is different. And that's okay.



  2. I totally agree with Danielle. While I still have my grief limbo, I completely beleive that Connor is how he is to change something about my life, to change my direction in life. i would have never met some of the awesome people that I have been so blessed to have in my life had it not been for IS. I had always thought my calling was nursing, but now that I prepare to go back into the employed world...I don't even want to be a nurse any more. My passion is working with families of SN kids. I think we all will learn what the reason is behind of all this one day, but it may not be while we are still here on this Earth, but we have to accept and love our children. I often think I love Connor more because of his differences.