More adventures with a special child, who manages to touch everyone she meets, again written by her mother.
I have already introduced you to my daughter, Nashi Danielle, eight years old. However, you haven't heard about myself or the rest of our family. So before I continue with Nashi, let me introduce the other players first.
First and foremost, I am Terri Ruth Ben Ami, and I am Nashi's mother. I am married to Tovah, my husband; been together thirteen years. In addition to Nashi, we have Hyman Benjamin, who, surprisingly enough, was not affected by Canavan disease; he is our healthy boy, our miracle child. (He's six.)
Still, I can't help but feeling we are cheating Hyman out of a normal childhood since much of our time is wrapped up in caring for Nashi's needs.
He doesn't act like it, but I wonder if he ever resents his sister. Even though she's older than him by two years, it is he who is the mature one. He has to help us in caring for Nashi. I'm sure it upsets him at times.
Hyman doesn't know this, but sometimes, late at night, I hear him in his room, crying. I've heard him say he hates his sister because "she can't do anything." All he wants is someone to play with. It makes him (and me) very sad.
Whenever Nashi has to go into the hospital, or he sees an ambulance parked in our driveway, our little boy worries that his sister is going to die. He is terrified that he will be left alone; he loves her so much (although sometimes I wonder about that whenever I hear him voicing his displeasure at night).
Because of his sister's health concerns, Hyman has had to grow up faster than most kids. He knows all about tube feedings, how to pour the liquid food into the tubes; it makes him feel responsible. He also knows about how to call 9-1-1 when we need an ambulance. He knows how to change her diapers and how to make her smile, make her laugh. He loves to sing silly songs to her wants to make her feel happy and comfortable.
He is a very good little boy; we couldn't be more proud of him!
Nashi is very blessed to have little Hyman as a brother. We are honored he is our son, as well as Nashi in our lives. I just don't know what we would have done if Hyman had been affected by CD; having one sick child is enough; I don't know what we would do if both children were affected.
That is something I or Tovah would not want to think about--let alone, experience!
My sister Rivka (she lives in Sacramento, California) has lost a child to CD herself: her son, Ethan. Had he lived, he would have been ten years old tomorrow; he died two years ago of respiratory failure; his lungs just gave out; his body couldn't take anymore. It was very sad; we still miss him terribly.
I have told her about Jacobs Ladder, the organization who is spearheading efforts to educate the public about this awful, insidious genetic disease that's killed too many children before their prime, and is busy raising funds to find a cure or treatment, so future sufferers of CD can have a chance at life or a future.
In addition, I also told her about the book "Lessons From Jacob: A Disabled Son Teaches His Mother About Courage, Hope, And Living Life To The Fullest" by Ellen Schwartz; hopefully she found a copy of it. It is sad, but it is such an inspiring story; it has given us hope for Nashi; for the first time in years, we are faced with the possibility of a miracle for her.
I want her to know that we aren't alone in our suffering. There are many families affected by this disease called Canavan's, and other diseases similar to it, and that through ongoing research, maybe no parent will have to watch their child suffer and possibly die as a result of this disease.
It must be hard for a younger brother or sister to take care of their older sibling, to be the mature one, as it were...powerfully penned thought provoking, educational write. Well done.
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
I have already introduced you to my daughter, Nashi Danielle, eight years old. However, you haven't heard about myself or the rest of our family. So before I continue with Nashi, let me introduce the other players first.
