October 2008~

My precious Nashi Danielle continues to beat the odds, even as I speak.

As you know, our oldest child is severely disabled, both physically as well as mentally.  She is unable to walk, speak, even eat on her own, take care of her own needs.  Someone has to take care of her: feeding her (by way of tube) every four hours (we give her her meds this way, too), diapering her, making sure she's clean, comfortable, dressing her, bathing her, brushing her hair, teeth, make sure she looks good.

Our child was born seemingly healthy; however at the age of six months, she started showing signs that something was terribly wrong.  When she had tests, it was discovered that I carried a faulty gene and passed it on to my child.  As a result, she has a neurodegenerative disease that's caused increasing disability and deterioation in her physical, cognitive skills, development.  Now at the age of nine, Nashi is more like a big infant than a nine-year-old little girl.

It's a really tragic situation, one I wouldn't want to wish on anyone else.  It's one of the worst things a parent (or parents) can ever face in life.

We prepared for our daughter to die.  She wasn't expected to live past the age of four years.  Now she's nine.  She's beaten the odds by five years; she is nothing short of a medical miracle.

Every day Nashi remains healthy is a gift from Yeshua.  Every day she survives is a miracle; we can't praise Him enough.  Such times are rare; there's no telling when she will end up in the hospital for one thing or another.  She can get so sick so easily; that's what makes her battling this disease so darned difficult.  When she's sick, we're ALL affected; our lives stop until Nashi is well and/or is out of the hospital.

We try to give Hyman (our other child) the attention, love he needs so desprerately.  We feel we are cheating him out of a normal childhood because our lives are so wrapped up with Nashi's medical needs.  We have plenty of "Hyman-Time" so our son doesn't feel left out; this has been beneficial to him; he's really blossomed in many ways!  We are so proud of him; we know it isn't easy for him!

As you know, we are in the process of adopting a little boy from China.  We plan on calling him Wallace, Wally for short.  We feel that this will be perfect for Hyman; that way he can have a playmate, not feel so alone, especially when we are tied up with his older sister.  So far the adoption process is progressing; however it is unnerving, what with all the interviews/home studies, endless scads of paperwork, the uncertainty of not knowing whether it is going to work out in the end or not.  We hope that Wally will be here by the first of the year--or at least, in the spring, at the very latest; we are already counting the days to where our new son-to-be will join our family!

Well, Nashi is crying again, so I must tend to her.  She's awake now.  I will write in here again, probably sometime next month, before Thanksgiving.  Until then, this is Terri signing off; take care and God bless!

~Terri Ruth Ben Ami, :D