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Monday, February 7, 2011

Slipping into the Abyss

No. I'm not having a breakdown. No. This is not a cry for help. But... when I started this blog I said it was going to be for me... then I started reading other people's blogs - and they were so ... happy. They were so day to day things. I sort of lost my way. I stopped talking about what was in my heart and began talking about what everyone wanted me to. So here is the real deal.

I'm scared to death. There are about a million reasons why. Alexander is doing amazingly well - and I'm still scared to death. And it pisses me off. Alexander is eating orally for about a week now... almost everything orally. He is doing well with his therapy. He is holding his head up. He is sitting well. And I smile and tell everyone how awesome it all is. AND IT IS. But.....

So why am I dying inside? Why am I so scared? Why am I so far from God and pretending to walk beside him? It is winter. Everywhere around me is sickness.  I have this great support group of friends who all have kids with 4 p-.  They post their children's triumphs and strugges.  Everyday I offer support and pray for their children. Alexander has escaped the hospital this winter (so far... please... I'm praying) - but so many of his friends have not.  They are sick. They are having seizures. They are regressing. They are not progressing. Those mommas hold their heads up high. Those mommas encourage.  Those mommas sit by the bedside and pray.  And I cannot. I am excited because Alexander is making such great progress... but what happens when he does not? What happens when he really can't bear weight on his legs? What happens??? What happens in a few years? When I look at the older chidren - please don't hate me, but I'm scared. I'm scared because everyone is so content.... Everyone talks about how blessed they are.

I feel blessed because Alexander was given to me. I feel blessed because I look into his face and feel love.  I feel blessed because I can cuddle him. He is still my baby.  But... how long can one have a newborn before they yearn for a toddler? How long can one have a toddler before they yearn for a child? Will I feel blessed in 5 years like those other mothers? Am I really that strong? Do I really walk that closely with God?

*sigh* I don't know if I should laugh or cry. I'm afraid that my feelings of love and satisfaction are connected to Alexander's progress.  I feel such pride because he is moving through this world and slowly mastering skills. Please, Lord, allow me to be contented with my son - no matter what he is able to achieve. Let me find it in my heart to be like the mothers I know. I thought I was past this part. I'm not grieving that Alexander has 4 p- .... it is something different. I'm scared for our future. I'm scared because I still just cannot turn it over to God. I know that is wrong. but... I can't change what is in my heart. And now you all know. I'm not a fake. I'm just me. with real fears. .... A little something for me.


At February 8, 2011 at 4:39 PM , Blogger Kisses4Kaylee said...

Kristen, everything that you wrote; everything that you feel; every worry, fear and concern you have-- I am right there with you. I know many of the moms you know who have accepted the WHS diagnosis, and you know what?-- I am not one of them. There is not a day that goes by that I do not wish with all my heart that I could have a do-over-- that I could go back in time and have different choices. I pray because I believe in the power of prayer; but I do not pray because I have faith in God. As much as I have tried to rekindle that relationship, I just feel betrayed, angry, and scared-- like you. They say that what doesn't kill us just makes us stronger. A friend of mine recently told me that it is what gives us character. Maybe that is true...but I would sacrifice a little character for some developmental milestones met "on time" any day of the week. What I HAVE received is a lot of pity and sympathy from my friends-- pity and sympathy that, while understood and appreciated, is the last thing I really desire. No one understands the enormity of what we are going through...and we have no choice but to take solace in the reassurances of those whose children are older and are progressing. I know that it doesn't take the fear away, but know that you are not alone and what you are feeling is not unusual, wrong, or a sign that you are a bad mother. I feel blessed that Kaylee is in my life...but I do not feel blessed that she has WHS. I am not sure if I will ever truly "accept" her condition as I should...but I will keep trying. And that is all that you can do, too. xo

At February 9, 2011 at 12:56 AM , Blogger Anna said...

You know. What you are feeling is completely normal. I am one of those Mums who has a 9 year old with WHS and I would describe myself as accepting Ryley and the WHS etc etc. But that doesn't stop me from constantly being scared for his future. It doesn't stop me crying at the thought that maybe I can't do this, that I can't be the best parent for him. And some days, I just wonder what if Ryley didn't have WHS. What would he be like?

I spent a lot of time in those early years just keeping my head above water. Our situation is different because he didn't get diagnosed until he was 2 years old. So up until that point I just figured I was doing a bloody awful job of being a parent. For us, the diagnosis was a relief. We were glad to have an answer, and embraced it.

But I will never forget those early years of just wishing he could do what the others his age could do. Just for once, I wanted not to have struggle with feeding, or him being sick. I was very very alone. I had so many people judging me, and I used to hold him while he slept in my arms (because he wouldn't sleep any other way) and I would sob for hours.

All I can say is that it does get better. Your feelings will change again and again. That is normal. Have you ever heard of Chronic Sorrow? Awful term, but it pretty much says that parents with children with disabilities need to acknowledge the sadness/fear, embrace your feelings and know that it is perfectly healthy and ok to feel that way you do.
I have written about it on my blog somewhere before.
Don't feel as though you ever have to accept anything. You are both wonderful parents and love both Alex and Kaylee with all your hearts.
WHS doesn't define their beautiful souls. But you guys already know that.

On my bad days, I still cry. I still feel like it is all too bloody hard. But Ryley is everything to me. He has helped define who I am as a mother. Which is the most important job in the world.

Lots of love to you both. Your children are so lucky to have you.


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