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.

Thursday, March 17, 2011

I'm Living in a Fantasy World

We had our intake today to see if we qualify for the Children's Health Waiver.  The waiver will (among other things) allow Annie therapy - all kids of therapy - OT, PT, speech, recreational therapy, music therapy, behavioral therapy, you name it, if she needs it she will receive it without a fight, without needing to reapply every 3 months, no getting put on hold (right now we are on hold for PT and have been on OT hold for over 2 months), no being told that she's been in therapy too long and no longer qualifies, nothing, just therapy when she needs it until she's 18.  An added bonus, the therapy is done IN HOME!!  YEP!  no more driving an hour round trip for 50 minutes of therapy!  What a blessing!
The problem is that in the state of MI there are only about 500 of these children's waivers and there is a preliminary questionnaire that is taken to determine if you qualify. The severity of your child's illness gets you placed higher on the waiting list.  Needless to say that the intake today was not necessarily one of the funnest things ever.  I had to write out a 24 hour "day in the life of Annie" to determine just how much time I spend caring for her - yikes!  Eye opening!  I realized that I need 30 hours and that this is only 1 of my 3 children.  I looked at it and honestly wondered how it all gets done.

Now on to the discussion about the laundry list of medical issues that Annie has.  It's amazing how many things are wrong in that one little body that we just sort of deal with in a way that is so second nature we don't even realize it's a problem anymore.  I mean really, just talking about Annie's medical issues confirms the fact that it's nothing short of a miracle that this child is living, breathing, thriving and progressing, she is truly amazing!

The feeding issues next - is there any special diet?  No, she eats by mouth all day and eats anything we're eating.  Oh, but wait, she's gluten free, and she can't tolerate milk or yogurt, oh yah, her food has to be chopped, oh and she aspirates on thin liquids so she can't have those, oh yah and nothing of a thick, sticky texture because she can't swallow appropriately and she chokes on things like that and trust me when I tell you the Heimlich maneuver does NOT bring those things up.  Oh and did I tell you that she can't feed herself or pick up a cup oh, or tell me when she's hungry or thirsty.

About this time Annie's bus comes to drop her off.  I grab her and bring her inside.  The social worker meets Annie and notices  - oh, you didn't tell me she wears AFO's, oh yah, and arm braces as well.  Why? Cause she hand mouths, is that why she has these calouses on her hands?  No, that's because she wrings her hands constantly.  Oh, and she has a vest that she wears to support her trunk when we work on walking and oh yah I told you she could stand by herself but no, she can't GET to standing on her own.  Why do we have a stander?  Oh, that's because she can stand by herself but she has no protective reflex's so I have to be within arms reach of her because if she falls she will timber like a tree and break her nose.  Oh that noise?  That's her grinding her teeth, yes, it happens constantly.  That other noise?  Oh, that's her swallowing air, it's called aerophagia and causes her severe GI discomfort, no, there is nothing they can do for that either.  Why is her face turning red?  Oh, that's because she holds her breath, or not really holding her breath but rather her autonomic apraxia actually stops her wind pipe from opening and she can't take a breath.  How often does that happen?  Only when she's awake. Yes, constantly unless she is sleeping.

Does she have behavioral issues?  No, absolutely NOT!  Well, she does scream quite a bit when she's tired or bored and she's not able to nap or go to sleep without being held and snuggled to sleep.  Of course she's bitten me before.  How often?  Usually at least a few times a week.  Yes, she's broken the skin before, she's got strong jaws.

Oh man, are you serious?  Is this what actually happens in our life?  Honestly, this is usually how I see it:
We have been dealing with most of these things for over 5 years now, it's scary to think that we are actually doing leaps and bounds better than we were when Annie was younger.  I think the brain has a way of going through the motions and erasing whats obviously just too much to take in.  Whenever an intake like this comes up it's always a harsh reality check.  So glad it's over, now I just hope we qualify!

With God ALL things are possible!  Matthew 19:26


  1. recently a good friend of mine watched anna for the first time ever when i was in the hospital and we were in dire straights trying to find people to help out because manny still had to go to work. she said she was so on-edge afraid she was going to screw something up... then manny came home and took over and she saw what he did in caring for anna with such ease. she couldn't believe this was our "normal." she didn't mean it condescendingly, it was just her way of letting us know how great she thought we were with all we had to deal with. it made me realize just HOW MUCH is our NORMAL and i honestly don't know how we do this on a daily basis... i think you are right about the brain.... i think it must desensitize our emotions (most of the time) so that we can get through it every day. praying for you guys. love you lots.

  2. These things are so overwhelming! They are for great reasons, but anytime I hear all of Abigail's things in a listed sort of way I feel like crying!
    You are such a great Mama though!!!


  3. I feel the same way every time we have to bring anybody up to date on my daughter Evalyn. She is so worth it, and it is usually pretty fun. But.

    Whenever I have occassion to add it all up, it is overwhelming. NOt just to me, but to the other person even more. It never fails for me to be effected by their reaction. I just need to realize that it's like a trapeze artist. Normal for me is NOT normal for the audience.

  4. Well said, Bridget! I love your amazing attitude. You are walking through the world of special needs with such dignity and grace!