August 7, 2011

Special Needs & Medically Fragile Help ...Please?

Dear Special Needs Parents,

I need help. (I just wanted to be blunt lol!)

I know that we still have a lot of you that visit our blog, and I am ever so grateful for your continued support. I feel blessed that I was able to join such an amazing community, and though our little special needs guy is no longer with us on Earth...I still feel the need to continue to be a part of it.

It's because of this that I am asking for your help on Carter's newest project. I am working on starting a new website/support group/forum to find ways to support new parents on their Special Needs/Medically Fragile journey. I know that when I first found out that we had landed in "Holland", I felt quite alone with not so much hope.

I'm just wondering if you could please either email me at teamcarterjay at gmail dot com, or leave a comment with ideas on what kind of support you wish you would have had in the beginning of your journey. Or even better, maybe support that you received that you feel helped you to realize that you CAN have HOPE while living in the world of Special Needs/Medically Fragile.

Thank you so much to each and every one of you!

Much Love and Many Prayers,


Sherry C said...

Heather your awesome this project is sweet and I sure will help many.

Phyllis said...

I have been thinking about this a lot and was planning to come back when I had a fabulous idea! But that never happened. I have been trying to think about what i experienced when our boys were first diagnosed. I keep going back the fact that I felt completely alone. Even in my marriage. Not that my husband isn't wonderful, but that we dealt with it in completely different ways. More recently I read somewhere (unfortunately I can't remember where) a short article about how a husband and wife go through things like this so differently, how men compartmentalize, women want to talk about it ad nauseum and many other things that provided me with that aha moment. Anyway, I hope this is making some kind of sense. I know you are onto something and I know there is a need there.

Rebekah said...

I guess I need to go back to my writings when Aaron was first diagnosed. I just remember feeling lost, so lost. I mean, he wasn't even born yet and they were talking about him dying. I kept searching for hope, and sometimes I found it, but it was few and far between. I was so fortunate to have supportive doctors. My perinatologist was absolutly the best. She used her expertise and knowledge to inform me, but let me control every decision that she could. She understood my need for information and set up consultations with specialists. What she couldn't do, was know exactly what I was feeling. Once Aaron was born, I connected with many other moms via Facebook who were also in the trenches, so to speak. Since then, I've tried to reach out and help other moms try to make sense of this incomprehensible diagnosis. I mean, grandparents die, not babies. You don't invite a new spirit into your home because you are looking forward to his funeral. I'm probably rambling here, but I want you to know I think your idea is a great one. Maybe what could help, would be names of doctors who have been willing and empathetic when it comes to treating these medically fragile, precious earth angels.