Shortly after my daughter's diagnosis, my wife and I also underwent genetic testing to ensure that there weren't any aspects of our makeup that are conducive to 1p36 deletions. The results showed that nothing in my genes or my wife's lead to our daughters disorder. That's where we left things until this summer.
My wife and I have talked quite a bit about the benefit that my little one could derive from having a sibling to observe and learn from. Before my daughter, we had planned to have our children about three years apart. But this became a huge source for discussion because my daughter is far from self-sufficient and an additional child would greatly increase the workload around our home. We were worried about another child taking away from the amount of time we're able to focus on our daughter's care and progress. We really went back and forth on this for quite a while.
In the end we decided it was time. My little girl will have a littler brother or sister coming in April. While my wife and I are very excited about this development, but there are still concerns. The "what if"s creep in and sometimes we're left wondering how things will turn out. How would we deal with raising two disabled children? I will welcome any new little one into our family regardless of health concerns or other circumstances. But I hope never to answer that question.
4 comments:
Hi: God bless you and your wife. I am a grandmother to a 1p36 Deletion granddaugther. My son is very young just hit 22 yrs old and his wife 18 yrs old. I am 43 yrs old so imagine. I am the one whole is practically raising the baby. She has 1p36 also. She is 3 1/2 and has severe hypotonia, seizures and hearing loss. But I have a lot of faith. She still does not walk. She does say mama or abu (grandma in spanish).
Well I am glad to know that you have sign up at 1p36. God bless.
Yolanda, you are very kind. I am sure that your son and his wife are so grateful for your love and help with their daughter. My wife and I also get a lot of support from our families. It helps so much.
Also, it sounds like your granddaughter is speaking a little bit more than my own little one. That's great. She even speaks a little bit of English and Spanish! That's great!
See you on the message boards. :-)
N8
Oh, Congratulations, Nate! (And your wife, as well!)
I know how scary it is, that first pregnancy after a 1p36; it doesn't matter how much you know that it was de novo, you still catch your breath about a thousand times a day! And then, when they hand you that baby that (odds are) is perfect: oh, the relief, and the joy, and the love! (Well, the love either way, but you know!)
My little CC is probably EK's biggest 'push' right now: he babbles almost as much as she does, and he has just become mobile, so she is working hard to 'stay ahead'!
It all works out, and its all a joy! Many hugs and prayers and positive thoughts for you and your wife and your little one! What a grand adventure you are embarking on!
(OK, yeah, I like babies in any form; so sue me!) *grin*
bella
Hi bella, thanks for always being so supportive. You've been through what my wife and I are going through now and it sounds like things have gone really well for your family. I sure hope this new arrival pushes my little girl to new heights. That would be awesome!
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