Howdy! Mary Elaine Maxwell here. I'm Caleb's mommy; I'm also a mother to our other two children, eight-year-old Corinthe Suzanne and 12-year-old Celeste Margaret.
As you know from my previous journal entry, our only son has special needs that require 24-hour medical care and because of it, he's frequently sick. He's a regular patient at the children's hospital near where we live (we live in Memphis, Tennessee). It is difficult to care for a child like our son, but we do manage; it's only by God's grace that we do.
Caleb has Batten's disease, which is in the lysosomal family of diseases (other diseases in this group include Tay-Sach's, Niemann-Pick disease, and Canavan's). It is virtually unheard of unless a person has a family member dealing with its ramifications or knows somebody that has it.
On good days, Caleb is a joy to have around. He doesn't talk, but he can sing or make noise: his noises are happy, angry, or sad, depending on his mood. Most of the time, though, he's happy: nothing really bothers him; he just takes life as it comes and enjoys it to the full.
On bad days, however, we worry. When he is sick, he will lie there, grey and seemingly lifeless, his eyelids fluttering or his eyes hanging half-mast, pupils rolled back, as he deals with another seizure, or moaning softly. He'll be burning up with fever or turn ice cold; it's on days like this when he ends up in the hospital, particularly if he is having more problems with his breathing than what is usual for him.
At the hospital, we sit by his bedside, praying, holding his hands, or stroking his beautiful red hair, as a way of trying to elicit some sort of response from him; we also talk to him and tell him that he's going to be okay.
It is during these "bad days" where we hate his illness. Not our son, but what he's dealing with. It isn't fair that a beautiful little boy who should be running around, making noise, or getting into mischief has to suffer so needlessly. We know that what he has is invariably fatal, so we have that hanging over our heads, too. (We've already made his funeral arrangements, and we've decided that if he does get worse to where nothing will help him get better, we will have him put into hospice care. He's suffered enough in his short six years; why only prolong his agony?)
His sisters are very good with him. They sing him songs, talk to him as though he understands, play with him, read to him, take turns holding him in their laps. They also help out with his diaper changes or tube feedings; they have become very good at performing these tasks. Sometimes Robert (my husband) or myself feel guilty, for having them having to help out with their younger brother's care, but most of the time they don't mind, which makes us very grateful.
When we are not worrying about Caleb or his future (it's a rare thing), we are a typical family, especially if Caleb isn't with us (like when he's with his nurses or grandma or is at respite care). We laugh, we joke around, we take the girls to the amusement park or zoo for a day of fun and Caleb-free time. They really look forward to these outings, for they can act like normal pre-teens and not have any concerns clouding their young, growing minds. Robert and I also have some cuddle time or just talk about life.
These are the days we look forward to the most. It's only natural.
The girls are into sports. While they don't play on a league (due to the demands of Caleb's situation; someone has to always be with him, lest he should fall ill unexpectedly), they do enjoy playing softball or soccer with their friends; they are both naturally gifted young athletes. Celeste loves softball; her younger sister, meanwhile, adores soccer.
Well, I have to go; have laundry, and then go shopping for groceries; we're running low on food and diapers, amongst other things. Oh, and also have to pick up Caleb's newest prescriptions from the doctor (he had a good report the other day, in case you are curious). I will write in here again soon; until then, this is Mary Elaine Maxwell saying so long for now! God bless! Keep these prayers coming; they really do help out, especially when Caleb is sick and/or in the hospital! Thanks in advance!
~Love, your friend in Memphis, Tennessee, Mary Elaine Maxwell. :)
~To be continued.~
