Tuesday, August 24, 2010

A wonderful day

Today was our first official day back to school. Our lives have been a bit upside down in the last few years, with me being sick and all, our 16 year old son being so...ya know, 16. A year and a half ago,my husband was laid off from his "secure"job at a major builder the same week I had to have a complete thyroidectomy. Homeschool, by the way, was the right way to go through all this. It just keeps me on my knees and gives me plenty of opportunity to die to self and serve others.
To go back even further, our 2nd born child was born with a genetic disease in which he seems to display all the classic symptoms. It is called Tuberous Sclerosis Complex and for him so far has meant a struggle to control seizures. In the past two years, it has gotten harder and a few monthes back we decided to switch medicine for only the 3rd time in 11 years. He also had a routine MRI and is on the schedule to have a specialist look more closely at cysts on his kidneys and a genetic counseling appointment that we are finally submitting to.
Two weeks ago he had the MRI and 5 days ago Dr. Mikati called to let us know that we would be coming to Duke on Monday for an appointment with the neurosurgeon, Dr. Grant. It appears that there is a growth in Peter's right ventricle, nick named"SEGA" and it will need removed as it is causing him to have hydrocephalus. The Doc didn't say when, only that Peter didn't seem to be displaying any alarming symptoms and let him know if he develops any. He also told us to take any family trips that we were considering. I am not sure what that meant.
The funny thing was that I was mostly mad about the appointment being on the first day of school that I had scheduled! You see, for about 2 years our lives have had spurts of structure that has revolved around how I felt on any given day. Sometimes I would fall asleep while reading out loud!
Finally, I am well wnough to only require labs every 6 monthes instead of weeks. I can exercise hard and not suffer with the rebound! I can sleep a normal amount of time instead of like a cat.
Thank you Jesus, this year I feel good.
I am prepared and I am planned.
Now, we will be organized and planned and systems will be in place. Routines are being taught and I am understanding more what it means to train a child. And this year is going to be great because our God is Great. Even if it means that one of my children will be having an operation on his brain.Even if my husband doesn't land the perfect job and even if my 16 year old will turn 17. I am trusting Him.

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