October 2009 (Columbus Day), Sonora, California, 1:40 p.m., P.T.~

Dear Journal~

Heather Danielle Abramson writing.  Thought I would update you on our lives, to let you know what is going on.

Tyle is no longer here with us.  He is now residing in a residential hospital for severely handicapped children; the care he requires got to be too much for Ted or I to handle, so we had no other choice.  We were on the verge of a nervous breakdown; that's how bad it got.

Tyle has a severe neurodegenerative disease known as Canavan's; he was born seemingly healthy, but at the age of six months or so, he started showing signs that something was wrong; after extensive tests, we found out that our secondborn child had Canavan disease.  The outcome:  increasing disabilities, blindness, and ultimately, death, before the age of four.

Well, Tyle's surpassed that; he will be five in December.  Every day he is still here is a miracle; yet we can't rejoice because our little boy can no longer do anything for himself.  He can no longer walk, talk, see, or even feed himself, let alone, go to the restroom on his own or dress himself.

We tried like hell to take care of Tyle, provide for his every need; it got to be too overwhelming, so after many months of deep-seated conversations (and prayer), we decided that maybe this was the best for our son:  to put him in a place where others, more skilled than us, could care for him, twenty-four hours a day.

It is difficult knowing he is no longer with us, but at the same token, it feels good to know that Ted and I can be there for our other child, Berry.  Berry has, more or less, been pushed into the background because of the care Tyle required; now she can get the one-on-one attention she was denied when her brother was still here with us.  Berry is a lot happier; she is a very honest, open-minded, loving child who loves life. 

She is very smart and is doing very well in the second grade.  We are very proud of her.

We are still trying to raise awareness of Canavan disease and diseases in the leukodystrophy family.  Diseases like Tay-Sach's.  Leigh's.  Lissencephaly.  Leukodystrophy.  Batten's.  Krabbe's.  There's a whole host of diseases/disorders that may have different names, yet all are very similar in how they affect children.  All cause increasing disability and loss of motor/neurologic/physical skills and abilities, and, ultimately, death.  They are horrible diseases that no child should ever have to endure.

We are in the process of writing a book about our son, Tyle, and the stress our family's gone through on account of his illness.  We hope that with the awareness we bring, people will be more willing to help or understand what it is like to parent a child with such a devastating condition.

We do see Tyle every week (Saturdays, usually); so far it appears he is getting excellent care.  He seems happy, and that is most pleasing to us.  We pray and hope that this continues.

Well, the wind's really picking up; we're due for some extremely high winds and heavy rains here, so I'd best go while the getting's good.  I will write in here again soon; until later, this is Heather Abramson saying so long and God bless!

~Love, your friend in California, Heather Danielle.  :)