I would like to say I'm ok, but I’m not. When Amber had surgery the day before Thanksgiving, I never intended to open up our lives to all of you. It just kept happening. I realized how many people were praying for us and we needed that. I found comfort in the support I received and I am receiving comfort from you now. Our family is completely overwhelmed by all of you.
Amber did it! Our prayers were answered! And I said I would accept God’s will no matter what happened. And I am going to say it again—I ACCEPT! But I’m having a tough time. There is no anger. We have a God who is good and right AT ALL TIMES. I’m not going to have answers. I will always wonder if I hadn’t laid in bed that extra 15 minutes, or….well, let’s just say there are a lot of “what ifs”.
Girls with Rett Syndrome DO die suddenly, and unexpectedly. I have always wondered what the circumstances are surrounding their deaths, as many other Rett moms do. So this isn’t something unusual in Rett Syndrome. What I do know is I never thought it was going to happen to us. Never in a million years did I expect God to take us through ALL THAT at the hospital to bring her home just to take her from us. Never! But she isn’t here. And I am incredibly sad.
Amber DID have some problems. Yes, she was getting better, much better. But I now know she was a prime candidate for this to happen. I found her not breathing at 5:50am on Tuesday, January 6th, Our whole family was awakened, 911 was called and this desperate mama and family begged God not to take her. We begged Amber not to leave us. I did CPR until the paramedics came and took over. It never stopped until everything was done for her at the hospital. That morning will be something our family will never forget. Finding my girl in bed, still warm, but not breathing, I will never forget.
I don’t have all the answers, but I know a God that does. I have to be thankful for many things. Amber received more love and attention from me and her family in the last two weeks than ever. She came home for Christmas. I spent so much time with her, loved her, talked to her and kissed her like never before. I even held that 13 year old girl on my lap before laying her into bed for the very last time. I told her I loved her and I kissed her for the last time. Thank you Jesus for the small stuff. Like I said before, God’s got this.
Trust in the Lord with all your heart, and lean not on your own understanding. Proverbs 3:5
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