Happy Tuesday friends,
Today I rest, finally. We ended one trip by celebrating with another one. So i don't feel like I have been home in weeks. And I don't like to rest I would rather create or anything else, but I also don't feel good and sometimes I think that is God's way of saying sit down and shut up a while.
This weekend and many moments before I have been trying to grasp the idea that my daughter Chrissy has a life expectancy of 15. She will be 15 in a few short weeks. I know many adults have this disorder and I don't want her to go but, it is also not healthy to just pretend it couldn't happen.
A dear friend recently lost their 16 year old unexpectedly, I thank God I have time to prepare myself and my family, but can one ever prepare for heartbreak like that? Chrissy isn't biologically mine but is a child of my heart and I have only had her 5 short years. So even though we never know the time or place things will happen, I still think reality says prepare and be filled with joy when she turns 15 and is alive and well and rejoice daily that she gets one more day with us. I have a hard time reconciling my regrets about her, could we have done more? did she get to experience life to it's fullest? Was she happy?
We'll all I do know is I taught her God's love and acceptance and that I didn't forget. So I am confident in knowing eternally she is taken care of. and if that is all I do that is enough.
I recently had a friend give me advice and she said this. "Don't feel guilty when she dies and you feel relief." At first I wasn't sure what she meant but as time goes on I realize that is what will happen. I love this child but I can't say it is easy. That every moment of the day is a struggle. That I will feel relief when I'm not tired and don't have to listen for her all night, or arrange help for her or go to the millions of doctor appoints all the time. But I guess for now I take each day as a gift. I help her experience all I can. And laugh and play and educate the people around us, so the next family who has to deal with this will have an easier time. And to encourage other families who live and breath dup15q and help them know were all in this together. So today as I rest (Because Chrissy is at her real dads for a few days). I pray you all find hope that only Christ can bring to any situation you are faced with. That there is hope and joy through Him for all life brings.
Love you all
Always
Suszi
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