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, August 25, 2011

Careful what you wish for

Every year for the past 3 years we have gone to Kalahari Water Park.  It started out as Scott having a very rare day off three years ago and us finding a way of avoiding a day of "fixing up the house".  My friend had facebooked about having an awesome time at a waterpark - I emailed her that morning to find out where she went and we had reservations and were on our way to the indoor/outdoor waterpark resort just a couple hours later.  Needless to say we LOVED it!  More importantly, the kids Loved it, and even more importantly, so did Annie!  Woooo Hooo! Score!  This was fun for the whole family!  So the next year we booked without hesitation and asked lots of family to come join us!  Thankfully, they DID!  Even MORE fun!  This year, with the economy and some extra expenses not budgeted for, we didn't think we would be able to swing our 1 night away with the family.  In the end, we did, and let me say that we are so very happy that we were able to do that.  Our kids had a blast!  And Annie, true to form, did too - once she was acclimated of course.

We got there at about 2pm on a rainy Saturday.  Annie, having had a very pleasant drive with us, decided that she was NOT happy to be in this place.  So, as Scott and the kids got all the bags from the car and got dressed into their bathing suits I sat with Annie trying to settle her down praying that God would help Annie calm down and that she would have a happy time while we were on vacation.  When Annie is happy, the family is happy!  So, as Annie settled into a nap I sort of day dreamed away at an easier life.  I saw sweet Annie having a blast running through the waterpark with her little sister, free from the debilitation of Rett Syndrome - screaming "watch me mommy, watch me!'.  I saw my Annie running up the stairs with her brother on their way up to the waterslides to ride on together and then scarfing down pizza (feeding herself!) and asking for snacks and juice boxes.  What a blessing those day dreams were, although they left me quite sad when I woke, wanting so badly for my Annie to get her independence back.

The next day and a half left us with a sweet, happy, content Annie!  A blessing and an answer to prayer for sure!  But then again, this was the first year that we heard from James, longing for his sister (just 15 months younger and now 42 inches tall) to come on the rides with him.  He asked over and over and over again.  "Annie's 42 inches, can she come on this ride with me?"  "Annie's tall enough now, why can't she ride this with me?"  "I can help Annie get on this floaty why can't she come on with me?". Oh God how I wished I could take my prayers back.  I didn't want my content Annie anymore, surely if she was screaming and unhappy James wouldn't have longed to be with her.  But no, I prayed for content and content was what I was given.  Lord help us in what we pray for.  What a lesson.  The night rolled on and we had some amazing times as a family, swimming, playing, having fun.

Kalahari has this amazing restaurant that just honors kids and their need to be the center of attention.  They have a nice big stage and a DJ that runs lots of fun games with prizes and when the games aren't going on the kids get to DANCE on the stage!  Um, can we say "Gracie's  favorite place?"!  This year we got to the restaurant late so we had to sit a little far back and Grace was less than thrilled heading up to the stage "solo" so far from her family at the table.  I decided I would be her tiny cheering section and walked up to the stage with her, squating between 2 tables while she danced to her hearts content.  To my dismay Gracie walked onto the stage very shyly, didn't dance and walked back down to whisper in my ear "do you think Annie could come up and dance with me?"

James and Grace are being hit with the giant water bucket!
 James doing a little rock climbing.
 Scott and Grace!  I love that they are complementary opposites! 
 Scotty zip lining
 Gracie riding Ollie, the camel
 sweet little Lulu, napping
 James and Gracie brining us lunch!  
 Jamesy zip lining
 James with the Rhino!
 Sott and Annie

 James and Grace dancing at our dinner table.  
It's as though my sweet day dreams while Annie was resting calmly in my arms had turned into nightmares  All that I had asked for "Annie to be content and happy" had opened the flood gates of "what could have been".  Don't get me wrong, we had a fabulous time, but I couldn't shake the fact that Annie is getting older and the older she gets the more her sister and brother need her and the less I can take the place of James's "fearless younger sister" or Gracie's "partner in crime".  God how I hate having to let go and allow my kids to experience the pain of Rett Syndrome.  I have to feel it, but I can deal.  Annie has to live it but I can remain stead fast in fighting for her.  James and Grace, God help me, how do I help them walk this walk?  Lord, give these kids a heart to keep loving and believing in their sister.  No matter how long it takes for a cure to be found.


  1. Oh man, this post has me in tears because it really hit home. In the past 1 1/2 years I have come to accept Reagan's diagnosis and let go of her doing most "typical" children things. I try not to think about what it would be like if she could play "dress up" with Lauren or be on the side of the pool jumping in with her little sister. You are such a wonderful, caring mother to want to shelter your other children from RS as much as possible. I'm glad that the family trip was successful but so sorry that it came with such an emotional turmoil. xoxo

  2. Thanks so much for sharing, Bridget. You are such an amazing mother. I am always moved by the ways Gracie and James are committed to finding a cure for their sister. I only hope we give Logan that same hope for Abby. Even though he is young, I worry that he knows too much about Rett than he should. I don't know how to protect him from it. I just pray there is a cure for our girls soon. xoxo