Elaine Maxwell writing. I'm the mother to Caleb Trevor, our son who has Batten's disease that's left him severely disabled, both physically and mentally.
Last time I wrote, he was in the hospital, fighting for his life. He kept having terrible seizures; doctors had to put him in a coma, so he could get a break, and they could try to figure out what was going on. It was a terrifying, terrible time for all of us; we were sure we were going to lose him several times.
Well, I'm happy to report, that the doctors have finally found the perfect combination of meds to keep his seizures at bay. Caleb hasn't had a seizure in over a month; it's been nothing short of miraculous!
Caleb is able to interact with us as only he can; he is a most delightful child with a sweet spirit, and a smile that could outshine the sun and the moon, both. He is such a special little boy; we feel blessed to be his parents!
I just wish that he didn't have to suffer. We didn't ask to carry this gene that we unknowingly passed on to our son; it just happened, and now we have to live with the ramifications. It isn't easy, not even on a good day; it's only by God's grace that we are able to get thorugh every day like we do.
In just a few weeks, Caleb will be starting school. He will be in the first grade. We are looking forward to it, as is he. He loves his teachers and aides, and he loves his classmates; he can't wait to see them all again once school begins again!
And while Caleb is at school, both my husband and myself can actually enjoy a good part of the day, live like normal people, forget of Caleb's sitaution, even if only for a little while. When Caleb is here, all of our energy is focused primarily on him; when he isn't here, or in the hospital, we can go out to eat, perhaps take in a movie, go shopping, enjoy our other kids, our daughters, Corinthe and Celeste.
On weekends, if Caleb isn't ill or in the hospital, we can go to our daughters' games and cheer them (hopefully) on to victory, go out to eat as a family, and go to the mall, where the kids can play to their hearts' content, and we can do some shopping. It's a family tradition with us; every Saturday we do this. And Sundays we go to church. Another family tradition.
Well, Celeste is calling me, so I will run. I will write in here again another time; until then, this is Elaine Maxwell saying so long! God bless you!
~Love, your friend, Elaine. :)
