Elaine Maxwell here. I'm sorry if I haven't written in a long time; with kids to raise, you know how that goes. Time has a way of getting away from you when you least expect it.
My husband, Robert, and I are busy with our kids, plus Robert works five days a week, up to ten hours a pop. When we can't be there for our kids, we have my mother come to help, or else we have nurses come to help with our youngest, who has serious special needs that affect his quality of life.
Our daughters, Corinthe Suzanne (13) and Celeste Margeret (9), continue to lead a life full of activities: sports, school, friends. They are both doing very well in their studies and continue to blaze trails on the soccer field. They absolutely adore soccer (not to mention, any other sport); they are incredibly athletic and have fun doing sports.
Meanwhile, Caleb Patrick Trevor, who is now seven, is still with us, which is a miracle in itself. Most people with his form of Batten's disease do not make it past their fourth or fifth birthday. He is a very happy, loving child, who knows how to get his way by batting his long, curly lashes and grinning that big grin of his. He is getting to be more adorable by the day!
Caleb has remained well, health-wise: no unexpected trips to the hospital; this is the longest stretch of good health he has had ever since we found out he had Batten's. It's still hard, though, because he requires much in the way of care; so many things can happen. One minute, he's like he is at the current time; the next -- *Boom!* He's in the hospital again, battling yet another infection, another illness, another problem that's unexpectedly come up.
I pray Caleb continues to enjoy good health. When he does, then our lives can proceed and we can enjoy each other without worry or despair. When he's down with a sickness or infection, it's like our whole world stops, and all our energy is focused on getting our son well or out of the hospital.
We know that Caleb won't live as long as his sisters, and that makes us sad; however, we've given our cares, our burdens of caring for a special child, over to God, and we are learning to trust in Him, especially during the bad days. We find out that this is helpful; God always gives us enough grace, enough mercy, to get through yet another day.
Caleb is very popular at church. Everyone is always so glad to see him in his wheelchair; Caleb, meanwhile, turns on the charm machine and everyone is smitten. They interact with him, talk to him, like he is a real person, instead of focusing entirely on his disabilities. This is the way it should be; Caleb may not look like much to most people, but he is a person who has feelings, wants, desires, or dreams, even though he may not be able to verbally express himself.
We know how he is feeling or what he wants through visual body cues or his face; he is very good at letting us know what he needs.
Well, it's about time to give Caleb his latest rounds of meds, so I will go now. Caleb will probably continue to snooze while I squirt his meds through the tube that's in his stomach; he won't know a thing. I will also probably change his diapers. Same thing. Once he's asleep, it's for the long haul: he can sleep through just about anything! LOL
Take care and may God bless you always! I will try to write more often; I promise!
~Love, Elaine Maxwell. :)
*To be continued.*
