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, March 25, 2013

I'm Worn

Most of the people reading this blog are momma's.  Some to typical kiddos and some to special ones but regardless we can all relate to the feeling of being worn.  Just so physically and mentally spent that you can't even think straight.

So a couple weeks ago we were hit pretty hard with some big life changes.  These changes included the realization that we would be loosing several amazing people in our support network.  I want to cry just writing those words.  Life with Rett Syndrome is hard, very hard.  Hard for our family but, more critically, hard for Annie.  We have been so blessed that in the past 7 years we have been able to find and build a wonderful support system for her.  We've had people come and go but over the years we've come to understand and know who was in this WITH us and who was doing their "job".  Regardless of weather the person is with us for 1 month or several years it's a feeling you get when you know you can place your heart in someone elses hands.  Today, I'm heartbroken to say that 3 of our supports that were WITH us in this journey will be changing their positions in our lives.  2 will be moving on to some amazing opportunities and life changes that we are so happy to see them enter into.  and 1 we are leaving her because of an opportunity of our own that has come to fruition.  Regardless of the circumstances the fact remains that this is change.  Scary change.  Change from a support system we have come to know, love and rely on.... to the unknown.  I don't do well with change.  I like comfortable but that's not always in my control, infact, that's never in my control.

Dealing with this change, other huge issues have also come up that threaten our family.  It's something we have known about for a little while but it's another worry, another stress.  An opportunity that we have been anticipating for several years has also come up.  I thought we would be thrilled because this is what we have been waiting for but unfortunatly it has brought up more questions than answers and has left me wondering weather we are doing the right thing for our family and in the eyes of God.  This opportunity has also come with tons of paperwork and reexplaining all that Rett Syndrome has taken from Annie, all that she goes through and how our family has been effected.  I've read, heard and spoken words that make me shake with fear, anger and saddness because it was never supposed to be this way and it shouldn't be this hard.  7 year old wounds that are still fresh are once again ripped open.  I'm trying to find my footing in all of this but it's hard.  It's so much.  All at once.  My body has felt the pressure and just to add to all of this I came down with a sinus infection that has shown no mercy.

I have been hearing this song on the radio lately, Worn by Tenth Avenue North,  but it wasn't until all of this that I took these words to heart:

As I process all of this I'm realizing that despite our fears we are in good hands.  God knows what we need.  He is faithful but we need to walk by faith even when we can't see what's ahead for us. I also firmly believe that when God makes changes they are for the better.  We've been through the fire before and we always come out a little worn but also a little better and a little stronger.  We don't know what's in store but I'm certain it's all part of a great plan.  Maybe this is just another step closer to our cure.  Maybe our supports are changing because we won't need supports much longer and these amazing people that have been with us will see the miracle and be forever changed.

My prayer:  you have seen us through so much change and this change always comes from you.  You give and you take away.  You know what we need and you will supply us.  You have brought amazing people into our lives, however, people are always changing and YOU are constant.  Help us to keep our eyes fixed on You.