Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Monday, May 30, 2011

Rett Syndrome and the "bad days"

On a good day Rett Syndrome robs my sweet daughter of her ability to walk, to talk, to use her hands, to play, to sing, to color, to dance, to run, to swim, to hug or kiss her family, to grab a drink or a snack, to have any sort of independence at all.

 And THAT is a GOOD day.

 On a bad day (or, as the case is now, a bad 2 weeks) Rett Syndrome steals all of the above but goes a step further and brings on severe anxiety, unexplained pain, exhaustion, weakness that leaves my daughter unable to hold her head up at times, tremmors, long breath holding spells, poor appetite and screaming fits that last for hours on end.

Its pretty amazing what you can get used to.  I am so past the physical limitations that Annie has, they get me down once in awhile but not often, I know what a smart, wonderful, happy little girl she is and that's really all that matters.  But when the bad days hit it's hard to stay positive.  A couple days I can deal with, I love her through and she bounces back, we are even more blessed to see that happy smile after coming through some difficulty, but when the bad days start to out number the good and I can't fix anything, I feel quite sorry for myself and my sweet daughter that has to live this day in and day out.  I try hard to hold it all together but there is no break, no time out, no time off, it's constant, it's heart wrenching, it's suffering in it's worst form - in a child.  God, bless my Annie and bring some relief quick!
I saw this on a blog that I follow (www.spelloutloud.com) and it lifted me a little today.  I'm going to print on card stock, frame it and hang it in Annie's room - It's so true, even through the bad days He know's the plans for Annie.
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3 comments:

  1. JourneyBeyondSurvivalJune 1, 2011 at 7:03 AM

    I hope that Annie is feeling much better by now. I hate the bad days. When she can handle it, give her a firm squeeze from me. For you, I hope that you get some peace and quiet and time to re-center soon. Even if it's just driving around in your own car.

    xo,
    a mommy who just coasted over the top of that hill.

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  2. LaceyJune 13, 2011 at 6:05 AM

    I found your blog from another one... our daughter was diagnosed with Rett's way back when she was young, but it turned out to not be that for her. When I look at your daughters picture I see the similarities w/our daughter at that age and I know why they thought our Sweet Pea had Retts. She didn't fit the profile as things went along and we have no diagnosis. My heart goes out to you. The days are hard and we don't want our life to be defined by the handicap. Our daughter will be 28 this summer and there have been lots of bumps in the road. They don't throw me for the loop that they used to, but they still get to me. We are also believer's and know where our help comes from... Christ in our strength.

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  3. Smilen ChampJuly 3, 2011 at 8:33 PM

    Hi
    my name is Jenna and i came across your site. Ur daughter is an amazing, courageous, strong and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and love it when people sign my geustbook. www.miraclechamp.webs.com

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