Thursday, December 18, 2008, 3:35 a.m., P.T.~

Dear Heather Abramson~

Thank you for taking the time to write to me; I appreciate it; however, you made one mistake.  You said in your letter "you didn't know me from Adam"; don't you remember meeting me at Dr. Myanmar's office on December 9th?  Just a thought...

Anyway, your son, Tyle, is beautiful!  Such pretty, curly, dark hair, and those eyes!  WOW!  Gorgeous!  He's gong to break a lot of hearts when he's older!  LOL

How do we cope with Nashi's illnesses/hospital stays?  With an awful lot of prayer, tears, trusting in the Lord to get us through, which He has, time and time again.  That's how we do it.  Any day Nashi wakes up breathing and/or well is a huge blessing from God; we thank Him every day for having our daughter in our lives.  She has taught us so much in the nine years we've had her; it is because of her that we've grown closer as a family.

You must have been having a bad day yesterday when you wrote your letter.  I sense an awful lot of frustration, pain in it.  I will keep you in my prayers; you seem like you could use some help.  If I were you, I'd get in contact with the local Canavan disease society, or at least Easter Seals or the March of Dimes.  Or maybe even United Way.  I am sure they could give you some advice as to what to do; there's help out there!

What do we do when we need to get away?  Have Carol or Denise, two of Nashi's favorite nurses, come stay with her while we go out.  We (meaning Tovah, Wally, Hyman, and myself) need a break from Nashi sometimes.  Sometimes Nashi comes with us, but when it's cold or windy out, or bad out, she usually stays home, since her lungs are so weak.

Any little bug comes along, and she's apt to catch it, sooner or later.  Then we have to fight like he** to keep her well--and even then, sometimes that doesn't work, as she ends up getting sick again and/or ending up in the hospital.

You must not give up hope, Heather.  Maybe a cure will be found in our children's lifetime.  That would be so wonderful; I'd love for Nashi to be able to see, speak, rise out of her wheelchair, run around!  For now, however, we must enjoy her as she is; she's a gift from God, and we have learned to cherish each moment, each second, each day with our special daughter!

Wally and Hyman are so good with her; it makes my heart smile to see them helping mommy as I tend to her tube feedings, diaper changes, medicine dispensions, dressing, et. al.  They make helping me out a game, and Nashi just laughs; she loves the attention.  Nothing ever makes her sad; the only time she does get sad is if she's bored or sick.  Otherwise, she has a big, drooly smile plastered on her face, and her laughter is like music to our ears!

We could have put our daughter into a hospital or institution, but we decided long ago that she'd get better care at home.  Her life isn't normal, per se, but it's a lot better than if she were lying in a hospital or institution, being cared for by strangers, and we didn't have any clue as to what was going on with her. 

Too often you hear of abuse or lack of care for residents of an institution, or poor medical care at hospitals, and we didn't want this for our Nashi, so we decided to take on the responsibility of taking care of her here at home.  She is much happier here, and so are we.

I am glad we met, Heather.  It makes us realize that we aren't the only ones going through this.  I do hope we can become better acquainted, become good friends.  I am sure your son and daughter would enjoy playing with Wally, Hyman, or Nashi! 

I hope you will call your child's nutrition pump provider; it sounds like there may be a problem.  I've had to do that with my child, and they were more than happy to come out, fix the problem.  More often than not, it was a mild situation; and they didn't charge us for their services, either, which was a miracle!  I don't like arguing with people either, but sometimes it has to be done if our child is to get the quality care they need.  We've come to expect that, and we fight fire with fire; we are very determined people!  LOL

We are getting ready for Christmas; we've already celebrated Hannukah; now Christmas will be here, and the children are all excited.  (We're Messianic Jews.)  They see the tree, the presents, and they can hardly contain themselves.  I don't have to worry so much about Nashi getting into the gifts; it's Wally and Hyman who I have to keep an eye on!  LOL  Last year Hyman (then almost six) decided to help himself to the bicycle we'd gotten him before Christmas morning; I was so mad at him I could have spit nails! LOL

Well, Heather, I will let you go.  I hear Wally singing; he usually wakes up with a song on his lips.  He's such a happy little boy!  This is going to be one memorable Christmas!  (We adopted Wally from China just a few months ago, and he's been a blessing!  We just love him so much!)  Take care, and may Yeshua bless you abundantly!  I will keep you, Ted, Berry, and Tyle in my prayers/thoughts!  Love you; talk to you soon!

(((HUGS))) and much love, your new friend, Terri Ben Ami.  :D

Oh!  Before I forget:  do you celebrate Christmas?  If so, let me wish you the merriest Christmas ever!  And may you have a most wonderful 2009!

~Terri.  :)