January 18, 2009~
Dear Terri Ben Ami~
Thank you for writing; this is your new friend, Heather Abramson, writing. Hope this finds you in good health.
Ted, Berry, and Tyle are okay; but Tyle's needs threaten to overwhelm me at times. I don't know how you do it; there aren't enough hours in a day to provide for both our children!
We don't celebrate Christmas; we celebrate Hanukkah. We are not Messianic Jews. We also celebrate the other Jewish holidays: Yom Kippur, Rosh Hosannah, Passover, et. al. We did, however, have a nice Hannukah; the children made out like bandits, especially Berry! She loved her new toys!
I felt sad for Tyle because he really doesn't know what's going on; it's hard to see if he really understands the activity around him or what is happening to him. He just lies there like a lump, seeing nothing; it breaks my heart each and every time!
The fact that he is getting worse doesn't sit well with me. Ted and I have been discussing our options as to what to do with him. Put him in a home, or do we continue to keep him here at home? Probably keeping him at home is the better choice; however, his needs threaten to overwhelm me!
Until I met you, I haven't really known any other people who are going through what we are. And so many others don't know about Canavan disease; they've never even heard of it. It's really frustrating!
New Years could have been better: Tyle had another cold; he ended up in the hospital again; he just got out three days ago, and he sleeps most of the time. Maybe that's a blessing in disquise; however, we still have to give him his meds through his G-tube, feed him five times a day (again through his tube), change his diapers.
I feel bad for Berry because we spend so much time with her brother. She does help in her own way, but I am sure she doesn't like having a brother who can't do anything but lie there like a lump in his bed! She probably wishes that Tyle could play with her!
This is when I am grateful for respite care. Our temple has a respite care program for families who have children with special needs; it's been a g-dsend!
If it were not for that, or the fact that my mom comes to help out on the weekends, I would have gone crazy long ago!
Well, Tye is squeaking (he's up), so I will let you go! Take care, and may Yeshua bless you all! I'll write to you again soon!
~Love, your friend, Heather Abramson. :)
