[ Post a Response | 22q Deletion Interest Board ]
Posted by Caryn
on 10/9/2008, 12:15 pm, in reply to "Just found out"
208.92.248.11
Oh My heart feels for you. I have a 7 year old daughter who was diagnosed at 4 months. I am going to tell you... Having a child with 22Q has been the best thing that has happened to me. Now please understand... I was right in your shoes. I am not discounting how you feel right now... I am just telling you that there is light. the unknown is the scariest part. My daughter is so happy. she has fought through so many things in her short little life and she is vibrant, loving and like any child challenging. I love her spirit and courage.
A lot of my support is on line. I am fortunate to live in a larger city and we do have some really good specialists that we see on a regular basis to help us through the medical challenges. We have her in a smaller school and we are working through the learning delays but i will tell you... my daughter has friends, she is happy and she is learning. she struggles but she perseveres.
the beginning is scary and hard and each year is better and better while it may bring more challenges, each year we feel stronger to deal with everything.
I wish you and your family the best and a life full of hugs!
--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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