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Kartessa


Dec 7, 2011, 7:31 PM
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Fear of loss
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Reply if you want, I probably wont read it... this is my therapy.

I have a 3 year old son who is my light, my world. His smile gives my life meaning but today I feel like its all being ripped away.

Last year he was diagnosed with Autism Spectrum Disorder, I was told it would be a while before we would know exactly where on the spectrum he would be. It was hard, but he functions quite well, just the social interactions are a little tough.

Today the hardest blow came. I was told he has muscular dystrophy. Its going to be a few weeks before we know what kind, but in the majority of children who are diagnosed at his age (>90%), its the really bad kind. The kind that's going to take his little body and just consume itself.

Right now he's just a regular little boy, but in a few years he'll have trouble walking, then will come the wheelchair, followed by a slow and agonizing death.

Why him? What did I do wrong? Why couldnt it be me? I don't want to bury my child.

I'm so fucking terrified and pissed off. I want to scream and fight and make it better but I cant.


Partner happiegrrrl


Dec 7, 2011, 8:11 PM
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Re: [Kartessa] Fear of loss [In reply to]
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I am so sorry that you and your little one are going through this. My prayers are with you - wish I had words that could soften the anguish you are feeling.


wonderwoman


Dec 8, 2011, 10:52 AM
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Re: [Kartessa] Fear of loss [In reply to]
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Whoa - that is a lot to process all at once. I am so sorry for your situation. Don't blame yourself. there is nothing that you did wrong. It's not fair, and it's is not your fault.

I don't know you personally, but I've seen enough of your posts to know that you are a strong woman, a good mom, and you will do everything possible for your kid.

Maybe some second opinions are in order? In the meantime, he's still here, so don't start picturing burials. You will drive yourself crazy with grief.

I am so sorry for what you're going through. I can't even imagine how hard it must be. But I do know that you're one tough chick with a lot of fight in you. Hang in there, and take each piece of news as it comes. We're all routing for you and your son, Kartessa!


gblauer
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Dec 9, 2011, 7:00 PM
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Re: [Kartessa] Fear of loss [In reply to]
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Kartessa,

I write this with tears in my eyes, my heart aches for you.

In the third grade, I met Jimmy Keegan and he soon became my very best friend. We did everything together, celebrated all of his birthdays, I was a part of his family for many many years. In fact, I believe I was Jimmy's "first kiss" when we were about 13 years old. I tell you this because Jimmy had muscular distrophy. While he did have trouble walking and eventually he was in a wheelchair, he did enjoy a very full and wonderful life. He profoundly impacted my life and I think of him often.

You have to stay strong, your attitude will have the most impact in how your son faces the future.

Kartess, don't lean into the future. For now, take each day as it comes and stay present in the moment.

You are in my thoughts and prayers.


(This post was edited by gblauer on Dec 10, 2011, 4:54 PM)


curt


Dec 10, 2011, 1:38 PM
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Re: [Kartessa] Fear of loss [In reply to]
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Kartessa wrote:
Reply if you want, I probably wont read it... this is my therapy.

I have a 3 year old son who is my light, my world. His smile gives my life meaning but today I feel like its all being ripped away.

Last year he was diagnosed with Autism Spectrum Disorder, I was told it would be a while before we would know exactly where on the spectrum he would be. It was hard, but he functions quite well, just the social interactions are a little tough.

Today the hardest blow came. I was told he has muscular dystrophy. Its going to be a few weeks before we know what kind, but in the majority of children who are diagnosed at his age (>90%), its the really bad kind. The kind that's going to take his little body and just consume itself

Right now he's just a regular little boy, but in a few years he'll have trouble walking, then will come the wheelchair, followed by a slow and agonizing death.

Well, you don't know me and also didn't ask for any advice--so take this for what you will. As difficult as it may seem right now, please try to maintain a positive attitude. Try to believe, until there is evidence otherwise, that your son is in the other 10%. A positive attitude can work wonders. I know this for a fact.

Kartessa wrote:
Why him? What did I do wrong? Why couldnt it be me?

This also will be difficult, but you must try to not blame yourself for something that is really nothing more than a "roll of the dice" coincidence. There is nothing else you could have done--and nothing that you have done caused your son to face these difficulties.

I wish you and your son the best.

Curt


lhwang


Dec 10, 2011, 8:50 PM
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Re: [Kartessa] Fear of loss [In reply to]
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I am so sorry, Kartessa.


superchuffer


Dec 12, 2011, 4:53 AM
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it isn't your fault in any way.

i teach kids with ASD and have had some with MS. on the up side, your son hasn't been assessed with a mental deficit, but a social and physical one. if he is smiling at you, that is a very good sign that he is on the more functional end of the spectrum.

early intervention of to curb the social deficits of ASD work well. see what you have available through the school system. they should start in pre-school if not before

i see you are Canadian. I would recommend applying for your version of the DD (developmental disability) wavier right away. Here, it takes 10-20 years to be put in place, but it will provide a host of services in his adult years.


(This post was edited by superchuffer on Dec 12, 2011, 4:57 AM)


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