Nathan's sister Emilie wrote this little essay in the
spring of 1987. She was 7 and in the second grade.
(She's 18 and in college now!) The assignment was to
write about their most admired person in their
lives. We were so proud of her for expressing her
love so well, and this piece wound up being published in
Focus on the Family's Clubhouse magazine for kids two
I admire my brother Nathan.
The reason is because he is
handicapped and still is happy,
and never complains. He has
Menkes Kinky Hair Disease. It
is a very rare disease, and it is a
very hard word. He is five years
old right now.
Another reason I love him is
because he almost died a few
weeks ago! He is patient and
tries hard. He is happy, cute,
has a cute giggle, and he doesn't
cry very much. He's very gentle.
He is always sick but doesn't
complain. He can't do very
much. He can't talk or walk,
but he really enjoys watching
me dance and play. He smiles a
lot and he loves me a lot. He
likes people to sing to him.
Inside he is like everybody
else. He teaches me to be brave.
I love him and admire him very
Emilie Elisabeth Saks, age 7
Emilie described Nathan very well. Although he was born with such a rare and devastating disease, he was a happy little boy, and a blessing to all who knew him. Nathan could do nothing for himself. He couldn't sit or stand or walk, or even turn over in bed. He was fed via a gastrostomy tube, and was catheterized. He didn't speak, but he could laugh and cry (mostly laugh!) to let us know his feelings. Parenting a child whose needs are so total caused us to get down to basics, and in loving him we learned what is really important in life. We can't think of anything better than to have been his family, and will be grateful forever for the fourteen years we were blessed to have him.
Nathan was born on October 6, 1981, and died on November 20, 1995 at the age of 14.. We sandwiched as much life into those years as we could. There were the bad times, when he was very ill and all we did was survive. But there were the good times, too, when we lived life with Nathan to the fullest. Although he couldn't do much in the eyes of the world, he experienced his life with joy.
Most people don't have a lot of experience with disabled children. Since we didn't really enjoy doing things without Nathan, we took him with us everywhere. People found that exceptional, but we discovered that not only did he touch people with his smile and his laugh, but almost everyone knows of someone in their life or experience who has a health problem or a disability. Nathan opened a lot of doors to people's lives, and we found many opportunities to encourage and help hurting people. As a result, I know there are now people who no longer see disability as a tragedy, and can understand how the short life of one sweet little boy can be a blessing and a gift. As Emilie said, "I love him and admire him very much."
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