Hello! Terri here, Terri Ben Ami.
I will be writing from time to time, just not as often as I have been, in sharing my daughter's story.
I hope you understand. I know that people are probably tired of hearing about what my daughter has to go through in order to live, to survive; however, people just don't understand the implications her disease has placed upon her--or on our lives.
Living with a severely disabled child is not easy, especially since we have another child, a little boy, Hyman, who needs our attention, our love, just as much as his "older" sister (although it's the older child who needs more supervision, more care).
I feel bad for Hyman because he's been cheated out of a normal childhood, but he's been a blessing in disquise, a terrific big brother who's tried to be there for her in times of illness or uncertainty.
We don't know what the future holds for our daughter: she could live for years, or she could die tomorrow, next week, next month. There's no telling what God has in store for her; but for now we plan on making Nashi's remaining years happy ones.
Case in point: our recent trip to DisneyWorld. We we went to Florida for a week of fun in the sun for Easter break, and we had a most marvelous time. We all got to meet "Mickey Mouse", and Nashi was the star of the park: everyone who saw her, came in contact with her, fell in love with her, and she got to get her picture made with all the Disney characters.
Hyman got to ride the rides, and we saw lots of shows, saw a lot of the attractions. Even Nashi got to ride some of the milder rides; her favorite by far was the "Small World Ride" (although we still have that tune runnin' through our heads now, nearly two weeks later!! LOL). She laughed in her special way, and she smiled so much I thought for a minute her face was going to fall off! LOL
Tovah and I got to spend some quality time by ourselves (and with Hyman) while loving volunteers from the local chapter of Make A Wish took care of Nashi's personal/medical needs. Guess they must have done a great job because Nashi managed to stay heathy for an entire week, which is something of a record for her.
She can get sick at the drop of a hat; it doesn't take much for her to end up in the hospital again.
Nashi has managed to stay well since this time, and we've been enjoying her, playing with her, interacting with her, making sure she has all she needs to be happy, comfortable, healthy. It's been a rather nice break not having to spend our days waiting in a crowded hospital room, while we wait for updates on our daughter.
I will keep you abreast about Nashi and her situation. I feel her story is not finished, not by a long shot, and I would like to stay in touch. Hopefully her run of current good health will continue; I pray this will come to pass. If God decides to take her, then that's His will, not ours. We don't like to think about that, but such as life with raising a child with Canavan (or any other catastrophic or terminal) disease.
You haven't heard the last from us, the Ben Amis (or Nashi)!!
Yeshua bless and talk to you again one day!
~Love, your friend, Terri Ruth, Nashi and Hy's mama. :)