It's been a happy week for all this week.
We're currently at Disneyworld in Orlando, Florida, where our family is on vacation. We're having the time of our lives, especially our daughter, Nashi, who is the main reason for this trip.
You see, Nashi has a fatal neurodegenrative disease for which there is no known treatment or cure. At the age of eight, she is totally helpless: blind, unable to walk, talk, even take care of herself or eat on her own. Yet we try not to see the downside of her serious disabilities: we try to see her as a child first.
Nashi was born seemingly okay; at the ago of six months, we noted that she had trouble holding her head up, plus she wasn't reaching her developmental milestones. This was when we took her to the pediatrician, who suggested we see a geneticist because he suspected she had something genetic going on.
Turns out he was right: Nashi had a disease called Canavan's disease, which would ultimately kill her before she reached the age of five.
We went home, and we prepared for our daughter to die.
However, she did not die. She's now lived four years longer than what doctors predicted; and she may even live to teenagerhood--and even beyond that.
People are working hard to find a cure for Canavan's; however, until that happy day occurs, all we can do is love our daughter, take care of her, provide for her.
No, it hasn't been easy (Nashi can get sick unexpectedly; she's been in and out of the hospital on a frequent basis, the most recent time just about a month ago with yet another round of pneumonia); however, when she's well, we enjoy her, and we enjoy taking care of her, making sure she's happy, comfortable.
Well, lately, Nashi's health has improved; so much, in fact, we decided to take a vacation, the first one we've had in God knows how long. Oh, we did go to Tennessee a few times to visit relatives; however, that doesn't count. This vacation we are on now is a real vacation; we needed to get away, forget about Nashi's health troubles--if only for a little while.
So far it's been working. I don't know when we've laughed so much--or so hard. Nashi has been the star of the park; she has met many of her favorite Disney heroes: Goofy, Donald Duck, Pluto, Winnie-the-Pooh, even her very favorite, Mickey Mouse. She's had her picture made with them, and they even gave her some autographs. The grin on our daughter's face is something we will never forget as long as we live: it was so bright, it could have very easily outshone the sun!
We've ridden some of the gentler rides, and of course, we've armed ourselves with plenty of souvenirs that I know the kids will treasure for the rest of their lives. They will probably never forget this Disneyworld vacation, and neither will we: we've become like little children ourselves, eager for the next adventure, anticipating even more excitement, more surprises.
The weather has been nothing short of spectacular: pleasantly warm with highs in the seventy-to-eighty degree range, not too hot, not too humid; just perfect. We couldn't have asked for better weather for our trip.
Because Nashi's in a wheelchair, we are given preferential treatment; it only goes further when people find out she is a "Make-A-Wish" child. They are touched by her courage, her will to live despite overwhelming physical/mental disabilities, and her smile, which has been practically nonstop this week. She is a beautiful child anyway; however, when Nashi smiles, it's as if the sunshine's emerged from behind the clouds, and everyone is drawn to her.
It never fails.
People do get sad when they see the helplessness of our daughter's situation; yet at the same time, they are willing to bend over backwards to make whatever time she has left on this earth memorable, not only for her, but for us, her family.
People have been paying for our meals, our souvenirs. We tell them we can pay for our own needs; however, they feel compelled to give us a little bit of a break. This is much appreciated; it shows us that there are truly angels on this earth who only want to make life a little easier, a little better, for Nashi or for us.
I will write more about our Disneyworld vacation when we return sometime next week. It seems hard to believe that we are here; yet we are enjoying every minute, and we are going to make every minute count as long as we are here in this magical place.
Take care and Yeshua bless!
~Love, Terri ben Ami, Nashi's mom (also Hyman's; can't forget about him!! :) ). :D