Tuesday, June 16, 2009

Abe's appt

Most days I go through life looking at everything as if it's a gift. I thank God for each one of them. Some days, thankfully rare, I am hit with WHY ME? Not so much that I am too good for all this to be happening to ME but it's hard to watch my children suffer. It's hard struggling and searching to find answers to something that will help. This afternoon as I was having my meltdown after we got back from the morning appts Mike walks over and just holds me. Then he sits with me and listens to every sob, every cry, every scream and every longing. He doesn't try to solve it. He doesn't tell me it will go away. Instead he says, well you know God gives special children to special people. We both dislike that saying so very much because we both know that we are no more special than any of God's other children. So of course I bust out laughing. Then he goes on to share his feelings. Surprisingly enough they are many of the same feelings I am having at the moment. Man is it nice to know I am not in this alone with these feelings. He said you know it's like running a never ending marathon. He is so right. Sometimes you have to stop, grab some nourishment and keep on running. Sometimes we have to stop and refuel, regroup and get back in the game, back in the pack and keep running. I always think just keep swimming.

Today when we met with Dr. Shoffner I was taken back 16 years ago when we started on this journey with Mary Elizabeth. She was 9 months old. It was long and hard. It hit me like a ton of bricks and I wasn't ready for it. I thought I was prepared. I mentally put on my bulldog skirt to help me feel strong. I took a deep breath and tried to take in all the words, all the information. I don't do well with "what ifs" and right now that's where we are and where we have to be until more test and more results start coming in. I was thankful that the technology is leaps and bounds ahead of where it was 16 years ago. All of this means more testing for Abe. Along with his muscle biopsy and lumbar puncture they will do a skin biopsy, blood and urine test. Two more things I think that I am forgetting. We may even find out more about Mary Elizabeth's diagnosis now if we can track down her muscle tissue and if it was processed and frozen correctly.

We couldn't ask for Dr. Shoffner and his assistant Camille to be more helpful or more wonderful. He is a brilliant man and he took so much time to explain it almost in words I could understand. Camille has been there to walk me through so much of this and will be with us as we coordinate all the things for surgery.

Abe did really well for his RMR test. The results should be back in a few days. I am attaching a couple of pictures of him during the test. I was thankful that I got to hold him through it. It really stressed him and we are having a hard time getting his seizures stopped.

The most wonderful part of my day was a delicious breakfast at Mimi's Cafe with my two favorite boys. I tell ya'll what, I am a stress eater and I am surprised I don't weigh 200 lbs. It was a wonderful meal though. The restaurant reminded me of Tony's at Magic Kingdom. The food was unlike any other. Lots of neat and different things on the menu. A nice time to regroup in between appts.

It's about time for Abe to have some more rescue meds so I better run. Thank you so much for your prayers! Thanks everyone for the uplifting messages that I received throughout the morning. What a way to get us through! We even received some info on a tandem wheelchair. Woohoo!!! We will be checking into on Friday when the wheelchair rep comes.

Thanks again for all the prayers. In case I don't get to update again before Thursday please pray for Michala's appt with the surgeon.

1 comment:

Kat said...

We are praying for your sweet family and for peace as you face uncertainties. I don't do well with limbo either :).