Well, I have been on quite a ride lately. Lets just say Christmas has brought not only great, fun, family times but also some very sad, angry and questioning emotions. Much of this time surrounds around Annie. She loves to be around people and fun times but gets overwhelmed when things get, well.... overwhelming. Who can blame her, at times I feel like I want to scream at the top of my lungs too. In fact Annie is much more reserved than her desperate mother would be in her position. Annie is the epitomy of love and grace, only crying out when the pain and frustration becomes too much to bear, not when it's just a nousance. I look to her for my sense of strength and endurance but as a mother it breaks me to my core when I see her cry. I just want to make everything Ok, to hide away with her, deep in a cave, never to come out until our cure is found. Unfortunatly I would miss James and Gracie much to much to let that ever happen. Not to mention the fact that I would be hiding an angel away, keeping her only to myself and that is definatly not what God has intended.
Lately I've been feeling so torn. I want so badly to participate in fun, Christmas activities, parties and good times with friends and I want the kids to really enjoy this time, but then I hear the cries and see the tears and all I want is to shut the doors, turn off the phones and stay warm in the house with my amazing husband and children, where its safe. I guess much of this stems from the season, the gifts, the atmosphere, the get togethers. Its so easy to go through life on automatic pilot each and every day. Tweeking things here and there and slowly making adjustments for the little things that come along. But then Birthdays, Holidays, Celebrations come up, you think you're fine and then "bam"! It hits! You are sooooo NOT normal. Suddenly the routine is shaken and you are out of your comfort zone. Suddenly there are questions like "what can I get her?" and "what is she able to do and understand"? Suddenly there are thoughts of all that is lost. Instead of dweling on what could be, my heart is directed to what has been taken away. Where's that cave?
I'm trying to put it all in perspective. I know soo many people go through this same thing, I am not alone. I know that we all have our crosses to bear. That God never promised a perfect life. I know that I need to dwell on the positives and that nothing can ever make me happy unless I'm content in my circumstances. I know all this but what is expected when you child screams unconsolably? Where is the contentment in watching a child on Christmas morning who is unable to run down the stairs to the Christmas tree or who is unable to peel back the Christmas wrapping on her presents that she's unable to ask for?
I don't have any answers, but I know the one thing that brings me a little peace. Knowing that this is a season and that this season of dealing with Rett Syndrome will eventually come to end, but more importantly that this time is part of a bigger plan. A plan that is bigger than me and my little family and little life. I find peace in knowing that there is a God that created the universe that created my Annie and He will work all things for good. That He has the last say and that He WILL restore health to her and heal her of her wounds. I will continue to hold on to the Hope that I have in the baby Jesus that came to save the world so many years ago and is still living today - who is still saving, restoring, loving and healing. Thank you God for sending your son. Thank you for this time of miracles and for the 3 amazing blessings that you allow me to wake up to each and every morning.
Happy Birthday Jesus!
Merry Christmas Everyone!