Tovah Ben Ami here.  Thought I'd write in here with another Nashi/family update, so you can see how we're doing.

We have our good days and bad.  Lately, though, it seems we've had more good, which we are thankful for.  We have a child who is severely disabled; she can get sick on a dime.  One minute she's fine; the next, she's fighting for her life.

We also have two very active little boys.  Caring for them is easy; it's caring for Nashi that remains the difficult part.  Nashi has Canavan disease, a neurogenetic disorder along the line of Tay-Sachs, and it's fatal; however, she's outlived doctor's predictions by five years, which has been nothing short of a miracle.

At nine, Nashi is blind, and she can't walk or talk.  She either lies in her bed or, when up, sits in her wheelchair.  Nurses come and help her every day during the week (weekends, too, if necessary) if it gets too overwhelming for us.  It's really a tragic condition.

I somehow feel guilty because my wife had the defective gene, as did I; we unknowingly passed it on to our daughter.  We didn't know she had a problem until a few months after her birth; she's been on a steady downward decline ever since.  She went from a giggly, happy baby who seemed developmentally on target to a child who is unable to do anything; it's been an emotional journey for all involved.

When we became parents to our second child, a son, Hyman, we watched him like a hawk, scared to death that we passed Canavan's on to him; however, much to our relief, tests concluded that he didn't have it.  He was a perfectly healthy little boy, which has been an answer to prayer.  He still remains healthy to this day.

Add one little four year old boy from China, and you can imagine how busy our lives are.  We don't have much free time; most of it's involved with the children, something we wouldn't trade for all the tea in China!  Or all the gold in the world!

Most of the time, people have been supportive, loving towards us; there are some, though, who act as if Nashi has something contagious, or else they don't know  what to say around her.  They end up saying something hurtful; this is when we wish that our daughter was healthy, like other children.  Those days are the worst.

So are the days where Nashi becomes sick.  When she gets sick, her body shuts down.  She lies there in her bed, eyes fluttering, skin the color of pale marble, not moving a muscle, looking more dead than alive.  Sometimes she's stopped breathing, which always scares the bejesus out of us; this is when we  have to get her to a hospital, quick.

Anything can put her in this predicament, even something as simple as a cold.  She can't cough, so this is why she ends up with pneumonia (or some other respiratory bug) so easily.

Each time she ends up in the hospital, we are always afraid that this is it; however, Nashi fights like a little tiger, as only she can, and she surprises us by recovering a few days later, thanks to oxygen and antibiotic treatment (plus the ever-watchful eyes of nurses and doctors).  When she tries to pull out her tubes, we know she's feeling better. 

We thank God every day for the miracles he's given us.  Nashi can not do much for herself, but she does reach out to others with her sweet spirit; she gives love freely, and people are always willing to accept it.  We thank God every day that she is with us; and we try to make her life as joyful as possible.

In kind, she brings joy to us, and others.  We are so blessed to have Nashi as our daughter; while we do wish she were healthy like other children, we do appreciate her gifts, and we couldn't have asked for a better daughter.

Well, Wally and Hyman are fighting again, so I will see what this is about.  We (either Terri or myself) will write in here again next month (or sooner, if need be), with another update on our family.  Until then, this is Tovah saying Yeshua bless!  Talk to you again another day!

~Tovah Ben Ami.  :)