feeling alone

iVillage Member
Registered: 07-21-2008
feeling alone
8
Mon, 07-21-2008 - 10:31pm

Hi Everyone...I've been a lurker here for a while but I've never posted on here...and I finally think that it is time.

iVillage Member
Registered: 06-28-2007
In reply to: mom_jess04
Mon, 07-21-2008 - 10:35pm
I hope getting it out helped you to feel better. Keeping secrets is very hard. As kids get older it becomes more clear what their abilities will be. I have always been very open about Krisitns problems which are big. Its a personal decsion but eventually people are going to know whether you tell them or not. Feel free to come here anytime. its a little quiet sometimes but we are here when you need us. Kari



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iVillage Member
Registered: 03-27-2003
In reply to: mom_jess04
Tue, 07-22-2008 - 9:04am

Hi -


It is a very lonely time, and that's one of

Avatar for londonrose2001
iVillage Member
Registered: 04-09-2003
In reply to: mom_jess04
Tue, 07-22-2008 - 12:34pm

We have not talked openly with most of my family about my son's diagnosis. I told my sister first, then my mom, and now I've let it slip out here and there with my brothers and their wives. Oddly, because we aren't very close to my dh's parents, they've known all along and they've been fabulous about it. My fil, in fact, has this sort of special bond with my ds. You would think they would be the least understanding.


It gets harder not to tell as time goes on, I can attest to that. I think Marina's idea is a good one, but you know your family best as to whether that would work or not.


Another way to do it is if

 

iVillage Member
Registered: 08-04-2006
In reply to: mom_jess04
Tue, 07-22-2008 - 5:36pm

(((Hugs)))

Hi there,

It feels awful to be alone in this special needs world. But, the reality is, you are not alone. Far from it.
I feel the way you feel, and I can speak for many of us here that from time to time, we feel the same sadness and desperation and hopelessness that you feel.

The way that I have chosen to tackle this is to be open about Devon's special needs. Because Devon doesn't look delayed right away makes it harder to explain. But, as soon as they see how quiet and "good" she is, I think people get it hint.
Devon also has quirky movements because of her low tone and lack of good control over her body. This and add in not walking and well, you get the picture.

As Kari mentioned this is an oh, so personal decision that only you and your dh can make. They are no easy, one way answers about this. Somedays, I just don't feel like I have to tell anyone anything, simply because I don't feel like it.
You will find that place, where you can "be" with others. When it gets too much, too much pain from seeing other children, its ok too to retreat and not go to that birthday party. The kids will understand. Protect your heart and you will find that maybe, you'll want to go that get together the next time.

Be well.
Mary

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iVillage Member
Registered: 07-02-2008
In reply to: mom_jess04
Tue, 07-22-2008 - 8:40pm
hi again, just looking at your pictures and I just think your baby is so beautiful!
anna
iVillage Member
Registered: 04-28-2005
In reply to: mom_jess04
Tue, 07-22-2008 - 9:58pm
Making your little one's dx known to others is such a personal choice like the others mentioned.

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iVillage Member
Registered: 07-21-2008
In reply to: mom_jess04
Tue, 07-22-2008 - 10:32pm

Thank you all so much for your replies!

iVillage Member
Registered: 08-04-2006
In reply to: mom_jess04
Tue, 07-22-2008 - 10:50pm

Hi,
Thanks for the kind words for Devon. She really is beautiful but of course, I am partial. ; )

Devon got her AFOs in Feb. of this year (it feels like longer!) and they really helped her ankle and foot get stronger. I used to be able to move her foot like a pivot, all around, it was really flexible. No wonder the poor little girl couldn't (who would?) put any weight on them. She also has a stander and we have a standing program for her. She does her stander time for at least an hr. a day. While she is in it, she could eat her snack, watch her cartoons, play or I'll read to her. Anything, to keep her from being bored on it and fuss.

I wish you a lot of patience with the testing process, should you proceed with it. It is a lot of appoints., waiting and the dr.s aren't always so smooth with their manners. But, I want to let you know that you will be able to handle it. The thing about testing is that there are a handful of disorders that can be treated. So, because there is this possibility, a certain amount of testing is necessary. This is only my opinion.

Things will get easier with time. You will find the strength.

It took a loooong time for Devon to be able to stand with assistance, she really started to able to do this about 2 weeks ago. I can tell you that I thought I'd never see the day. You should see my face when Devon first stood up with help. I was sooo happy and proud.

Hang on to your faith, you are not alone.
Mary

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