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Thursday, November 15, 2012

Today, Down Syndrome Sucks

I don't worry about Down syndrome itself I don't stress about the future, I just don't..............it's the medical stuff that get me.

Down syndrome itself doesn't bother me, but there's always that nagging worry that the other shoe will drop.  It happens less & less as K gets older.  At first it was her heart...& that one still comes up every now & then. Then it was sleep apnea, high iron levels, thyroid, hearing & vision & of course there's the ever present nagging thought in the back of my mind that kids with DS are more likely to have leukemia.  You understand right? That list just goes on & on & that's what I sometimes have trouble dealing with. 

K finally had her AAI x ray done last week. I was so sure it would be fine but she does indeed have AAI.

I think I would be totally at peace with Down syndrome if if it weren't for the potential medical issues.  I don't cry about Down syndrome but I've been hiding my tears all day, from the doctor, from an acquaintance who I wasn't wanting to share with, from the man from the Internet company who is trying to overcharge me (after my morning he got a polite but demanding earful!) & from K & my next youngest KJ, because although I explained it & will explain it to their older sisters when they get home from school, I don't want to worry them.

Today I feel like calling my mom (who lives to far away so I won't even tell her anything until I know more facts) to come over, give me a hug & help out with meals & kids & everything so I can just go hide somewhere & cry because today, Down syndrome sucks.
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13 comments:

  1. My Little WondersNovember 15, 2012 at 1:48 PM

    ((((Hug)))) Sometimes I wonder if those nagging fears will ever go away.

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  2. Chris6hNovember 15, 2012 at 2:00 PM

    Aww...shoot! I get it mama, believe me I get it!!! Hugs!!!!!!!!

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  3. MelissaNovember 15, 2012 at 4:20 PM

    So sorry, and totally with you on it not being Down syndrome, but the stuff that comes along with it. :(

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  4. MariskaNovember 15, 2012 at 4:45 PM

    Sorry to hear that! To be honest, I had never even heard of AAI, I just looked it up.

    I totally agree with the potential medical issues being the hardest part of dealing with Down syndrome.

    Big hug!



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  5. LauraNovember 15, 2012 at 5:06 PM

    Thanks everyone.

    Christine - thanks. I know you understand. That was you that I was thinking if in my previous post on changing yur chid with DS when I mentioned the big L.

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  6. We Can Do All ThingsNovember 15, 2012 at 5:30 PM

    That does SUCK! I am so sorry, that you are carrying this burden right now. HUGS to you and K!

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  7. CindyNovember 15, 2012 at 5:55 PM

    Oh, I'm so sorry. I definitely agree with you, it's the medical issues that are the hardest to deal with. Sometimes a good cry is good medicine!

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  8. Scarborough Kindness ProjectNovember 16, 2012 at 3:47 AM

    I am with you too! Hugs!!!

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  9. AnonymousNovember 16, 2012 at 6:19 AM

    Your opening sentence sums up my thoughts exactly. We haven't had many medical issues at all thus far, but even our small ones have been hard on me. (((hugs)))

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  10. RosaNovember 16, 2012 at 7:27 AM

    I know how you are feeling right now. I went trough the same last year. The x-ray is an screening and not a diagnosis. I still can have the sensation of butterflies in my stomach when thinking in the possibility that my son had AAI. To get a true diagnosis further testing is required, please don't take the x-ray as a diagnosis. My son's x-ray showed borderline, but when the x-ray was repeated a year later, it showed a normal gap. Here is when I wrote about our experience with AAI: http://www.asuperbaby.blogspot.com/2012/02/tommys-neck-instability.html.
    I send you a lot of TIGHT HUGS. I will be praying for your little girl. Thinks will be fine!

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  11. BeccaNovember 16, 2012 at 9:09 AM

    I'm so sorry. :-( I only recently learned that AAI x-rays need to be done every year if a child is going to be doing any kind of tumbling/horseriding/etc. activities. I know it's going to terrify me every time, and I think about it alot, even though Samantha's first screen was negative. ((hugs))

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  12. The MomNovember 20, 2012 at 10:00 AM

    Hugs!!! My son has AOI, which is a little more rare than AAI and even though his is fairly severe - not quite enough for surgery - his only restriction is no tumbling type activities that would put stress on those vertebrae. I hope you can get some answers quickly from your specialist. I think there is a lot of variability on the x-rays - and the radiologist read ours as more serious than the neurosurgeon. So take heart!!! We did an MRI as a follow-up, and will follow up again in a year or so with more x-rays. Sending lots of hugs and prayers!!!

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  13. I Just Want A Cup Of CoffeeApril 5, 2014 at 6:41 PM

    AMEN and amen. I have a LOT of those. :(

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