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, January 5, 2012

The Uncertainty

This morning I walked into Annie's room and she was already awake with a sweet smile on her face.  She had slept all night long and had gotten her full feeding at night.  Hooray for a beautiful morning.  We got dressed, into the car and dropped the kids off at school - Annie was all smiles and happy noises - so was mom!  We got home and got right to work on a new app that I had put onto the ipad - Annie loved it and was doing fantastic!  After about 15 minutes she got sleepy - time for  her morning nap and my morning workout!  Honestly, could this day BE any more perfect?  Annie wakes up as I'm getting out of the shower and we start working on her stretches - Annie is so happy that now she is laughing out loud and we are just having a fantastic time.  After stretches we get on her braces and hop back in the car to pick up Gracie.  This is where things take a turn.  Out of nowhere Annie starts moaning and grinding her teeth.  I pray that she holds on for just 10 minutes so we can grab Grace and get out of the school before the full screaming fit starts - I know it's coming.  We make it, but the entire car ride back home was Annie screaming and kicking and Grace and I telling her over and over "It's OK Annie, we're almost home".  Annie's fit continues at home, I try to ask her what's wrong but her gaze is turned down, she won't look at her yes/no cards, I'm left to guess.  I go down the insanely long list of issues and give her every sort of comfort I can.  She refuses food, refuses to drink, TV, meds, snuggles, music, nothing calms her.  For my sanity as well as Gracies (and our ear drums) I take Annie upstairs into her bed where she continues to scream, kick and cry for 45 minutes.  When I just can't bear to watch through the monitor any longer I go upstairs scoop her up and take her back to the couch so I can try again to comfort her.  She kicks, screams, writhes in pain, bites, grinds her teeth and eventually calms down, exhausted from the fit, she passes out on the couch in her special spot.

Who could have guessed that such a beautiful morning would have such a terrible afternoon.  The uncertainty of every moment is one of the hardest things to deal with.  The unexplained moments of joy and laugh out loud happiness I'll take, but the unexplained moments of pain and suffering I could do without.  I'm left to wonder what caused the pain, where is the pain, is this really pain?  Although it looks like it maybe it's frustration or sadness?  I really don't have a clue and because I don't have a clue as to what it is there's no way for me to help her through it.  I've said time and time again that I will not let Annie's behavior dictate my attitude but it's much easier said than done.  When she's happy I'm thrilled and when she's in pain I'm in agony.  I'm not sure I'd be a very good mom if I could watch my child suffer and then just shake it off, although there has to be a happy medium here.

As Annie sleeps on the couch I take a much needed mental break and wonder what's in store for the rest of our day, what will she be like when she wakes? How will she feel at dinner and what time will she finally settle down for the night?  Nothing is ever the same, nothing is ever predictable, anything can change at any moment without any notice and there is nothing that I can do about any of it.  Such a hard thing to deal with.  I remind myself that there is no joy without pain, I just wish there was some distance between the two and it wasn't a constant back and forth minute to minute.  I press on knowing that as much as I'm hurting my baby is hurting so much more.  I think of that sweet, precious smile and that infectious giggle and I know that they will return soon and will be even sweeter having gone through the pain.  Annie's birthday is tomorrow, I'm praying her day is filled with so much happiness that the pain can't touch her.