Filed Under (CMV & Special Needs, Hearing Loss) by Kel on 23-03-2009

I read another blog, a little while ago, of a mother who hopes her child has deaf children. It got me thinking. It got me wondering – about the future, about my hopes and expectations, about my life as it is.

Last night, I realized that I have found peace somewhere in the mash of cochlear implantation, impending occupational therapy, first birthday madness, and the anniversary of loss. I lay down in bed last night and, as I was falling asleep, I thought of the fact that Danny is deaf and delayed. It wasn’t in a “oh my god” sort of way, nor in a “sucks to be us” kind of way. I thought of the fact that Danny was born with CMV, that I caught this crazy virus I’d never heard of. It wasn’t in a “I totally failed him” mindset.

Somewhere, as I accepted the fact that he is one and nowhere near table foods or sippy cups or walking, as I watched in amazement as he began to crawl, I forgave myself and God and everyone else. I’m not even sure when it happened.

I realized this, then I reflected. I have found peace, I have found the elusive “ok with it.” Deaf is part of who Danny is, as it his unknown and yet to be revealed challenges. I feel for the kid, certainly, and will never be 110% okay with it, because it sucks that he has to work so much harder. But – he’ll do it. WE’LL do it. Despite that all, though, would I wish the same for him?

No.

I hope he has children that are whole and healthy. Maybe if his hearing loss had been a genetic quirk and not a remnant of illness and near fatal infections, I could wish for a grandchild like him. I have no issue with his deafness, I crossed that bridge long ago and have no looked back. But I would never wish anyone the journey we went through, the fear and uncertainty. Especially not my own child.

CMV sucks.

Hopefully, money I raise in the March of Dimes walk (more on that later, ha!) can help make it suck less. Maybe even make it go away, at least make it stop disabling babies and ending lives before they begin.

But Danny had it, and that’s OK.

I thought about it all, then rolled over and went to sleep. At least until Eric woke me up at 3am announcing he had thrown up, then took me by the hand, pointed to the mess on the stairs, and told me quite sternly, “you clean it up right there.” Oh, the joys of motherhood.

     

 

Comments

Nat on 23 March, 2009 at 11:32 am #

I find myself coming to that place about my loss. Acceptance. Knowing I’ll be okay, even if this isn’t how I envisioned it at all. It’s an odd kind of place to be in, after so long thinking it wasn’t even possible.

I’m not there about the infertility yet, but one day it won’t be so urgent.


Kel on 23 March, 2009 at 11:41 am #

Which is funny, because I still hold a pretty big grudge against the world at your loss. Ha!


Drew's Mom on 23 March, 2009 at 1:21 pm #

I agree with what you wrote. And while I don’t know fully what you went through with a CMV diagnosis, I know the pain of learning there is something “wrong” with your child. I would never wish that kind of pain, heart ache and struggle on my kids.


Hope on 23 March, 2009 at 1:49 pm #

I agree Kel. I’ve made peace with Ava’s issues too. It was a hard pill to swallow, but I don’t look back anymore. I know our story is different, but I understand what you’re saying.

((Hugs)) to you.


karen on 23 March, 2009 at 6:27 pm #

Now Kelly… you lived with me long enough to know that I am not overly religious, some would say that they doubt that I believe at all. And that is their opinion and I don’t care. But there is one prayer that that comes to mind right now. It is called the serenity prayer,… God grant me the serenity to accept the things that I cannot change, courage to change the things that I can and the wisdom to know the difference.Living one day at a time , one moment at a time. And it truly is the best way. Danny is Danny, and think about how much you love that little munchkin and how hard you have fought for him.Life is hard and challenging, that is why we call it life and not a party. Grab it and live it and love the people around you and help the people that need help and just do the best with it that you can. And acceptance is a very large part of getting through the day. Everyone has a cross to bear, somedays it is heavier and some days it is lighter, and Danny will be no different. But he will have you there to help him carry it. I am glad that you are feeling better about the world around you, it is afterall a very beautiful place . Take care and kiss my grandbabies for me please. Love you to the moon and back, mom


Hetha on 23 March, 2009 at 8:52 pm #

i always come here after your mom has commented and reading her words never fails to put me in tears. I have amazing parents too, their love and support has made it possible for me to be in the place of peace that you describe so well in this post.


Heather on 31 March, 2009 at 4:10 pm #

I’m glad you are okay with what is… since it is what it is.

And LOL at Eric. Bossy little man.


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