[ Post a Response | 22q Deletion Interest Board ]
Posted by maile's mom
on 10/5/2008, 4:03 pm, in reply to "Just found out"
71.164.192.135
My daughter is 6.5 years and has been through a lot in her short life. It is hard to hear that your child is not perfect. The best advice a wise dr. gave me was to spend some time grieving, and then try to let it go. The best thing we can do for our children is love them. Believe it or not, after all we have been through and 6.5 years, if I was given the choice I would not make my daughter "normal" It has been a long road to haul, but I love my daughter and she is the sweetest thing there is. I would advise you to get further genetic testing for the specific deletion your daughter has. Good luck with everything. I promise it is not the end of the world. This baby will bring you more joy then you ever imagined. One more thing, surround yourself with positive people!
--Previous Message--
: hi
: my 9 month old daughter has just
: been diagnosed with Q22 deletion,
: and I am just devastated, I have no
: idea hw I am going to deal with
: this, I am just so scared. I am only
: 23 and my whole life I have grown up
: with my sister who has an
: intelectual disability but do not
: know the medical name for what she
: has, and just seeing her, how she
: is, I just don't know how I'm going
: to deal with it if my daughter is te
: same way. My mum refuses to get her
: tested in fear she will have it and
: she does not want to be blamed for
: it, but this will determine weather
: or not my fiance and I have more
: children.
: I'm just so scared, my daughter is
: reaching all her milestones and many
: doctors say they she looks like a
: normal looking baby and you wouldn't
: even know jus by looking at her that
: she has something wrong with her.
: I'm just scared of the unknown, its
: just a big waiting game at the
: moment to see how severe its going
: to be.
: And the thing that pisses me off the
: most is that during my pregnancy
: with her I did everything perfect, I
: exercised ate all the right foods,
: did not have not one bad piece of
: food, not one coffee, not one drop
: of alcohol, I don't take drugs so
: theres no need to mention that, di
: not have one painkiller such as
: panadol or nuraphen. I just did all
: the right things and still shes not
: right. I was stressing so much that
: I did everything right because she
: wasmy 4th pregnancy, I had 3 prior
: misscarriages before her and they
: did all teting to find out wh and
: there was o reason, everything
: looked normal with my cells and
: chromosomes.
: Just don't know what to do from
: here, plus I live in a small mining
: town in the middle of no where so
: theres not much support here and we
: have no family up here so its a bit
: hard. Please someone respond with
: some encouraging words.
: HELP!!!
:
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