IT HAS BEEN OVER A YEAR SINCE I POSTED HERE. HAD TO GO THROUGH A LONG JOURNEY AFTER TESTING. I FINALLY TOLD MY OLDEST DAUGHTER ABOUT MY TEST RESULTS ABOUT 6 MONTHS AGO. NOW, MY AUNT/ MOTHER ( SHE RAISED ME) IS DYING. SHE IS IN THE VERY LATE STAAGES AND HAS BATTLED LONG, AND HEROICALLY. I GAVE MY DAUGHTER THE OPTION TO GO WITH ME AFTER WE TALKED A FEW TIMES. SHE SAID YES. I KNEW IN MY HEART THAT SHE REALLY DIDNT KNOW WHAT IT WAS GOING TO BE LIKE. WE WENT TO MASSACHUSETTS FOR AN EXTENDED STAY TO SET UP IN HOME HOSPICE AND GET THINGS READY. AS SOON AS SHE WALKED IN, I SAW HER FACE. IT WAS AWFUL. MY HEART BROKE ALL OVER AGAIN. SHE ASKED TO GO OUTSIDE AND SAID HER STOMACH HURT. SHE GOT SICK IN THE DRIVEWAY AND SAID SHE WANTED TO LEAVE SHE DIDNT FEEL WELL. ON THE DRIVE TOWARD THE HOTEL SHE SAID " ARE WE GOING TO BE LIKE THAT?"
I SAID " MAYBE. BUT, RIGHT NOW SWEETIE , WE ARE JUST FINE"
I THINK I CRIED MYSELF NEARLY INSIDE OUT FOR 3 DAYS. I UNDERSTAND WHAT SHE FELT. BUT, THERE IT WAS, ONE OF THE THINGS I THOUGH I COULDNT LIVE THROUGH. ONCE AGAIN I DID.
I HAVE BEEN GRIEVING IN MANY VARIOUS AND FUN WAYS THE LAST FEW WEEKS. ROUND AND ROUND, UP DOWN, ALL OVER. I FINALLY WENT TO DR. AND GOT CHLONOPIN. PICKING IT UP TODAY FOR A GOOD NIGHTS REST.
THANKS FOR LISTENING TO ME...

Hi Kag,

Has your daughter spoke to you about this incident since? It sounds like it was a big shock for her, has she seen people with disabilities/conditions before?

Matt

[www.hdyo.org]

So sorry for what you and your family are experiencing...sending {{{{A BIG WARM HUG}}}}

Hang in there,

Carla

So sorry that this was such an upsetting experience for your daughter.and you. It sounds like this was her first exposure to any one with a severe disability. It's possible that it could help to find a supportive therapist to work with you and your daughter to help both of you process your feelings about this. Maybe someone at the Center of excellence in your state could recommend someone.



Edited 1 time(s). Last edit at 03/03/2012 03:52PM by paulabhouck.

Oh, gosh, that's so sad! I'm so sorry. For our son, he never really had the 'shock' of it, because Ray started symptoms and gradually declined throughout Joey's childhood, but I remember my neices and nephew (who are not at risk), being shocked and having the 'look' on their face . . . for your daughter, it has to be x10, especially if she knows the genetics of it all, open communication now and possibly a counselor is a great idea, to get all those fears, questions and uncertainities out . . . I so wish this didn't have to be so difficult. But you are strong and you can get through this, too. Thoughts and prayers for you, your daughter, aunt and whole family!!

I have a 10 year old daughter as well. My husband has hd and had to be put into a nursing home last November. She witnessed some pretty crazy behavior and saw her dads declining health and mental state. She misses him (I take the kids to visit once a week) but is afraid of him at the same time. She feels guilty for feeling this way.

I found out the hospice in our area has a few different programs for children and they aren't all for children who have lost a loved one. My girls are now getting one on one therapy and its been wonderful and very helpful. I would definately look into it.

I believe in being open with kids about hd, with age appropriate information. However, i'm 54 years old, and have had hd for 8 years now. I think if someone had shown me, as an adult, late stage hd within 6 months of finding out i had hd, i probably would have jumped off a bridge. And your daughter is only 10 years old. How did you think she would react??? Yes, i think she is going to need some counselling and immediate support for sure, i can't even imagine what she is going through right now. I don't think this should have happened, but it has happened, and it can't be undone, so now she will need some help and support...how did your ex feel about this trip? Did he give any input ahead of time if he thought this would be too much for her?



Edited 2 time(s). Last edit at 03/04/2012 05:51PM by Barb.