My greatest fear

About three weeks ago through Facebook I met a mom in Maine, who has identical twin boys with Fragile X -- just like me.

And of course, any mom with children with Fragile X is like a sister to me.

So to find another Fragile X mom with identical twins is really, really special for me.  I belong to the local multiples club and that's been fantastic.  Any mom of twins, triplets or more will tell you there's nothing like the camaraderie we find amongst each other.

That is maybe even more true with the Fragile X moms.  We have a thread of likeness strung through us that we don't find with other people.

So to find both of those in one person is like Christmas Day for me.  I run and cling (well, figuratively) to this person, because I think this might be the one person, among all the others, whose life really will be JUST like mine.  I know it's a little illogical, but I'm attracted to people with the multiples/Fragile X combination.  I beeline for them.  Can't help it.

Her name was Sara, and her identical twin boys with Fragile X are 13 years old.  I looked through all her pictures of them -- they are so gorgeous!  Two little blondies, looking just alike, sitting together, making faces at the camera, wearing their matching glasses.  With something of that Fragile X look in their faces that we FX moms have all come to recognize, and adore.

We exchanged several emails, chatting about our boys.  We shared pictures and stories about our lives.  I asked her if she'd be coming to the International Fragile X Conference in Miami next July, and she didn't think she'd make it.  But we hoped we'd get to meet in person someday.  I felt such a great connection to her.

Which is why it came as such a heart-skipping shock to find out she'd passed away, only about two weeks after we met.

Any death of a young person, a young mother at that, is a horrible tragedy.  Nobody wants to orphan their children.

When your children have special needs, you can multiple that by 10.  Leaving my boys, suddenly, like that?  It's my greatest fear, and I bet I share that with most of the moms of children with special needs.

We know we are our childrens' best advocates.  Supporters.  Teachers.  Cheerleaders.  Caretakers.  Butt-wipers.  Nobody is going to do it with the fervor and love and intensity that we do.  There is no substitute for the Momma.

Of course, I don't want to leave Aliza either.  But it's different with her.  She's neurotypical, to use the current politically correct word.  She's only 9, but she's street-smart.  The boys won't be so street-smart.  I try to focus on the potential the boys have rather than the limitations, but reality sometimes rears its ugly head.  The reality is, they are going to need their mom in more ways than Aliza will, and for a lot longer.

We reluctantly let go of our special childrens' hands to let them go to school.  We don't very often have babysitters for our kids who aren't grandparents or other relatives.  As much as we might like to avoid the words "normal" and "different," our kids just aren't like other peoples' kids.  They are vulnerable.  They really need us.  Nobody is going to provide care as well as we can.  (And when I say "we," I mean "I."  But I'm pretty sure I'm not the only one.)

Sara, I'm sorry I didn't get to know you better.  I think often of the husband and family you left behind.  I think often of your sweet little twin boys.  And I pray that God will provide an advocate for them as devoted as their mother was.