September Days September 11
Dear Friends of Grace,
I’ve gotten so many inquiries lately about how things are going here with Grace and the kids back in school and me working full time. Things are quite different. David and I pass for a few hours each evening and he’s off to work. He has a job for another 16 months so we are going to make this work as best we can for now. We also had to say goodbye to a very important part of our family. Many of you had the honor of meeting Jack, a twenty year old “Friend of Grace” who became her care giver and official “Best Friend of Grace” without a doubt. He wasn’t an outsider in our home. He was an insider and a dear member of our family and was with us almost every day for five months. He left for Army bootcamp the end of August and we have missed him terribly. He and Grace have given us all the inspiration to never give up, work hard and fight hard every day. Failure is not an option for Grace, Jack or the Reddingtons.
I transitioned back to work with a rough start just days after Jack left, but finally feel like the turbulence is settling down. I felt much like a veteran soldier returning to “normal” civilian life after fighting a war for three years ~ a war of tears, screams, seizures, deterioration and isolation among other things. I knew nothing other than life in my home, with Grace and my family and the constancy of the crisis management that we’ve had to deal with since diagnosis day. A year ago I would have called me working full time impossible. I also remember working with a Down’s Syndrome child 3 years ago. The parents had no other children and I wondered how they could manage a child like him. He was a sweet and beautiful child, but a lot of work. I never thought I could have dealt with Rett Syndrome either, but we’re doing it. When we are given a task, we have to accept it and do it as gracefully and willingly as possible. That’s all any of us can do.
Having to adjust to so many changes, so quickly has been very challenging not devastating, but definitely testing our perseverence and faith.
When you have literally zero time to focus on anything but survival for yourself and your family, it is quite a transition to let go of that way of living and begin to live a life that is completely separate and different from what has become a familiar existence. I am not a quitter. Because of Grace and the life I’ve been blessed to live with her, I am stronger and more determined to “complete the mission.” You learn to complain little and appreciate lots when you live with someone like Grace.
I’d say, Lily and I struggle the most. I struggle with trying to keep up with the demands of Grace’s needs at home and working out some sticky issues at school (trying to fit it all in) and Lily who’s a dainty three year old is trying to cope with missing her mommy. She’s always had to make do with the mommy time she had, but now especially, there’s very little time left in the day. Last night, I was trying to get her settled into bed, with all her belly aches and questions, while Grace was screaming on my hip, I was hurrying out of the room and Lily says with a very brave little voice, “But Mommy, where do I put my tears?” That’s the hardest part about life right now…knowing that my children need something from me that I can’t give them. It’s a tough one to cope with but I’m doing my best and praying more than ever for more time, more strength and more grace to get it all done.
I’ll end on that note and thank you for all the continued prayers, support and encouragement that really does get me through each day. Please always remember Grace in your prayers and Jack too, her best friend.
Thanks for all the continued support of our family and Grace.
Love from Tara and all the Reddingtons
