Just say YES November 10
Hi Everyone!
I’ve been out of touch for a while basically waiting for some news so forgive me for dodging some of you lately. Columbus Day weekend I found a lump in my neck and quickly went to get an ultrasound. They discovered that there were 2 and I went immediately to get a biopsy. 16 years ago I had a malignant tumor removed from my thyroid so we were suspecting more of the same.
Well, that same weekend, it seemed that the chains of suffering that Grace has been living with for 3 years just fell off. It was like a “trade” - me for her. It’s actually what I’ve been asking for anyway. Most parents agree that they would take their child’s suffering instead of watching them suffer. Anyway, I prayed over and over to just give me “something” instead and give her a break.
I found it kind of peculiar that the exact same time I found my lumps, Grace just stopped suffering. I never worried a bit about myself though. David knew I had been praying for this and he said seriously, “What did you pray for??!!” Well, it was a request of suffering for suffering…mine for hers. Anyway, I didn’t know what was in store for me so I didn’t send out any updates. They day of the biopsies was intense. It took 13 needles plunging in and out of my neck to get the necessary samples. Despite the pain and discomfort, it was in many ways a wonderful thing to lay there myself and not have to stand on the sidelines watching Grace go through another pain episode or another procedure. That actually gave me joy. I prepared myself for whatever God wanted me to do but am happy to tell you at this point that the biopsies were negative and I don’t have to do anything but keep an eye on them.
I’ve been put to so many tests over the years. Many times, it seemed for us that when things were really bleak and hope was far away, just continuing to trust and say “Yes” to God was the test for us. At this time, we all are relishing in Grace’s peace and contentment. She is quiet and at times withdrawn, but she is happy. She’s not being tormented. She’s not taking major pain meds and we are actually decreasing some of her existing meds and phasing them out slowly.
Life seems to be taking a turn for us. We are starting to feel…”normal.” I haven’t felt that in a very long time. And of course normal for us isn’t normal for most of you but we’ll take it! I look back and wonder how we were all able to keep up the pace but we did it and now we are enjoying a bit of reprieve from all the chaos. Now we can finally deal with just plain old Rett Syndrome. As devastating as Rett is, it sure is nice to experience a more typical course of it. I never would have guessed I would be thankful for “normal Rett Syndrome.”
Grace continues to get more beautiful. Her smile brightens our days, her giggles are hearty and there is finally peace in her eyes.
Today, I am immensely grateful and we will truly have another blessed Thanksgiving. I’ll always be thankful no matter what happens. I have faith, peace and joy in my life and all around me. There isn’t anything that can take that away - not the economy, not health issues, finances, basically nothing. Once you have that embedded in your heart, it can’t be removed ~ I wish you all those 3 things: Faith, Peace and Joy today and always.
Love,
Tara