Hello!  Mary Elaine Maxwell here.  Thought I'd write an update regarding our family, especially our son, Caleb Trevor, who is six years old--and dying of a terrible disease that was passed on to him by us.

We both carried a faulty gene that caused him to be diagnosed with a lysosomal disease that will kill him before he reaches adulthood.  He was diagnosed with Batten's when he was a few months old; he's since gone from a laughing, smiley little boy to one who needs total care, twenty four hours a day.  It's been nothing short of heartbreaking.

At the age of six, Caleb cannot walk, talk, feed himself, go to the bathroom on his own, even eat.  He needs total care; if we don't do it, then we have nurses who come over nearly every day, to give us a much-needed break.

Sometimes Celeste and Corinthe (my two other children; they're 12 and eight) get angry with us; they don't understand why their little brother has to suffer so much.  They blame us for his problems.  In a way it is:  we both carried that damned faulty gene that passed this condition on to him. 

Yet they don't stay angry long, thank goodness, for they are soon buried in their sports.  Both girls are very athletic and both play on sports teams at their schools.  They are very good athletes; we are very proud of their skills. 

We enjoy watching the girls partake in their games; we are their biggest fans.  We are the ones who can be found on the sidelines,  yelling and screaming our heads off.  Even Caleb gets into it.  He cannot talk, but the smile on his face and his sparkly eyes say volumes just how he feels about his sisters' athletic skills.  He really enjoys himself.

I think he loves the sensation of the wind blowing on his face or the warmth of the sun hitting his eyelids most of all.  He loves being outdoors; it's better than having him lie in his bed all of the time!

Caleb also enjoys therapy or having people talk with him, or people holding him.  He knows how to turn on the charm; he is a big flirt.  He's always flirting with the nurses; his favorite nurse is Carole; she is his special angel.

Unfortunately, Caleb isn't the only one in our family who has Batten's disease:  my sister's son Abrahiam, has it too.  He's only two; he hasn't had it as long as my son.  He can still see and talk, but for how much longer is anyone's guess.  We both know the outcome, and it terrifies us. 

Batten's disease runs in our family, on both sides.  This is why both Caleb and Abrahiam got it.

I don't know how long Caleb will be around, but for now, every day we have him is a day to be cherished.  He's already lived longer than doctors predicted:  they didn't think he'd live to be four.  He's now six.  He's lived two years longer than what they'd originally thought, which has been nothing short of miraculous. 

No, it's not an easy life to take care of a kid with such significant special needs, but we manage somehow.

It's only by God's grace that we do.

Well, it's time to hook Caleb up to his special bag of nutrients (plus it's time for his meds), so I will go for now.  I will write in here again with another update on our family (as well as my little nephew, Abrahiam).  Until later, this is Mary Elaine Maxwell saying so long!  Take care and God bless!

~Love, your friend in Memphis, Tennessee, Mary Elaine Maxwell, Caleb's mommy (also mom to Corinthe and Celeste).  :)

*To be continued.*