Saturday, April 18, 2009, 8:10 a.m., M.T.~

Dear Journal~

My name is Terri Ruth Ben Ami. I live in California with my family:  my husband, Tovah, and our two remaining children, four-year-old Wallace and seven-year-old Hyman. 

We did have a daughter, Nashi Danielle; she died last month as a result of Canavan disease.  She was expected to die anyway; however, she lived longer than doctors thought she would; for that we are grateful.  That she lived as long as she did was nothing short of a miracle.

We miss our daughter more than you will ever know.  I can't go into her bedroom without crying; it seems she is still here, but we know that she's now gone to Heaven to be with Jesus.  She has a new body, and she is probably laughing, talking, running around, things she couldn't do here on earth while she was alive.

At times I blame myself and my husband for passing the faulty gene that caused our daughter to have this devastating condition.  At birth she seemed normal; however, when she was six months old, she started exhibiting subtile signs that something was wrong.  It bothered us.  She wasn't tracking with her eyes, seemed inattentive, and seemed floppy in nature, particularly her head; for some reason she could not hold it up, no matter how hard she tried.

When we took her to see our pediatrician, he suggested that we see a specialist; he suspected something neurological was going on.  We put Nashi through test after test, to see if he could pin down the problem.  When he got the results, he might as well have taken a rifle, aimed, and shot us point blank.  The diagnosis he gave had that same effect.

Nashi was diagnosed with Canavan disease, a rare, but fatal, genetic disorder caused by a faulty gene; in time she would become blind, and increasingly disabled, both mentally and physically.  She would never learn how to walk or talk, and in time she would need twenty four hour care.  If she lived longer than four, we could be counted as blessed:  most children with Canavan disease died by the age of four, but some did live into their teens or even their twenties.

It broke our hearts to see our once laughing baby girl lose one skill or developmental milestone after another.  By the time she was four she couldn't sit up without support, was nonverbal, and was having seizures.  At five, she got a feeding tube implanted; this was how she ate, five times a day (she also got her medications administered the same way).  It was really hard, not just on us, her parents, but on her little brother, who didn't understand why his older sister was the way she was.

Every so often, Nashi would end up in the hospital for one thing or another; at times we lived more at the hospital than at our very own house!  If I couldn't be there, Tovah would spend the day there, trying to be there for our daughter.  I had a busy life here at home, trying to take care of the bills, an active little boy, and trying to get things done around the house.  It was really hard!

We did get some hope last year, though:  we put in to adopt a little child from China.  We ended up getting a three-year-old boy whom we called Wallace (Wally).  He's been nothing but a joy, but he really didn't understand the needs of his big sister.  Even though she was older, she was more like an infant; she needed 'round-the-clock care.  He was able to do more things than his big sister, even though he was nearly six  years younger.

When Nashi got worse over the beginning of the year, we wondered just how long she would live.  We wondered what would happen next, or if she would suffer more than she already was.  It was a horrible time.  When she finally passed away on March 3 of this year (I was the one who found her dead in her bed), it broke our hearts;  yet we were relieved that she was finally without pain, at peace.  For her, her long hard road of a life had finally come to a peaceful end.

We still have days where we cry, question God, or get angry.  We also have days where we know that she is in a better place, that she is no longer suffering.  People have been so supportive of us in our time of mourning, yet sometimes I feel it isn't enough.  We should have had more time with our daughter; she didn't deserve to die like she did!

Well, I'm crying agin, so I'll go now.  Damnit, I hate this!  Oh, Nashi, why??  Why did you have to leave us like this??  We miss you and love you so much!!

~Terri Ruth.  :( >tears!<