The Journey We Can Travel Together!
63 Members
Created by Angela Coleman

the children

does anyone look at thier childrens faces and wonder all the time if you gave them this horrible disease?

By the time my children grow up they wont know the real me.  they'll have a few childhood memories, but not life long memories.

I don't even know if this is the place to do it but im just venting...sorry

24 months ago
Results 1 - 5

  • ~*CrYsTaL

    Yes I often wonder if I gave HD to my sweet sweet Zoee.  Everytime i do that it just breaks me up inside.  It is really hard if you have HD and  you have kids that have 50/50 chance.  There is not a day that goes by that I dont pray that Zoee dosnt have this awful awful disease.  My daughter is very open about HD.  She loves to tell people about HD.  She knows that she has a chance of getting HD. I have never kept anything from her.  Zoee has decided she wants to get tested when she turns 18.  Hopefully by then we wont need for her to test.    Yes i do often think about it to answer your question.  Make the most of the time you do have with your kids, make as many memories as possible, no matter how small or how crazy.

    24 months ago

  • Dina

    I have two sons 13 and 11 and I think the very same thing, that they wont know the real me or Im going to miss out on very important things, things only a mother can understand. So this is what I did (do) I bought two leather journals, one for each of them and I write to them. About myself about HD about them things I want them to know and something they can take with them when Im not here. They dont know about the journals, but imagine they will be greatful for them if Im not here to meet thier children. Its the only thing I can do that makes me feel some comfort about what is going to happen in the future....So maybe this will help other people. I hope so....

    21 months ago

  • donna

    EVERY DAY!!! there hasn't been a day that's gone by since we got the positive result of my husband's test, that i don't think about this!!  my jason is 12 and my sarah is 8....the greatest loves of my life.   each night when they are asleep, i go into their rooms, kiss them on the head and pray to god to spare them from this horrible disease.  all's we have right now is prayer.....

    20 months ago

  • Andrew

    We adopted both girls as new-born's for that very reason too much guilt for me.  My fear is the same thing as Bobbi's.  Especially for my younger one - who is 6, she will have no memories of me other than sick.  That breaks my heart.  Even the older one - her memories are very limited when I was healthy.  

    I am trying to get together three things for the kids - first will be a scrapbook, photos for the kids, second will be some sort of CD - DVD, showing more about me and final will be a letter to girls.

    Also - trying to use time while I am healthy for little things - like soccer games and playing and big like Disney etc.

    19 months ago

  • Teresa

    It's always a thought that is never far from mind. I haven't even tested yet so I don't even know that I have it.

    Scrapbooks and journals are wonderful ideas. Try to get friends and family to do the same. Then your child will have a better understanding of how you were perceived by others.

    19 months ago

Sign In to leave a comment.