BSOW: First Response

I am incredibly honored to be featuring this particular blog today. I’ll give you a moment to go grab your tissues because you will laugh just as hard as you will cry.

Ready?

This week’s featured blogger is no stranger to the poop. In fact, she gets a double dose of it on a daily basis, and could tell you exactly what she has learned as a mom. She struggles to keep her sanity intact (What mom doesn’t!) asking that eternal  “Is this normal” question that all special needs moms find themselves asking along the way.

She’s got a great grip on how to destress. She’s got a little heartbreak that will make you say “AWwwwwwww!” and very special Santa that will leave you in tears.

This week’s Best Scoop of the Week is none other than The Fragile X Files!

I went a little bit away from my normal fun questions and asked her:

“What is the #1 piece of advice you’d wish someone had told you way back in the beginning that would have made your life easier as a special needs parent?”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My twin sons have Fragile X Syndrome.  The day the neurologist called me at work to give me the news, our own personal “D-day,” was hands down, the hardest, blackest, worst day of my life.

In those first few seconds, I did a quick search on Yahoo for “Fragile X” because I’d never heard of it.  The first link to come up was the National Fragile X Foundation website.  Right smack on its home page it stated “Fragile X Syndrome is the most common inherited cause of mental retardation,” and my heart stopped.  The whole world stopped.  My beautiful baby boys were going to grow up to be mentally retarded….

I’m going to go right on ahead and say that there’s nothing anyone could have said to cushion that blow.  I just can’t think of anything.

On the other hand, there are several things that people said, that certainly did not lessen the pain.

“At least it doesn’t affect them physically.  They will love long, healthy lives.”

(Great, so they may live to be 90 year old men, by which time everyone who cares about them will be dead and total strangers will be taking care of them, because they aren’t going to be able to care for themselves and certainly aren’t going to have any children of their own.  Yep, that makes me feel tons better.)

“At least you know.  At least you have a diagnosis.  It’s better than not knowing.”

(You’re right.  I know exactly what their future will entail.  I know exactly what to close my eyes to.  I also know there’s no hope they’ll outgrow it.  I know it’s genetic, there’s no cure, and no matter what drugs we give them or what kind of therapy we try, they are going to still have Fragile X, for the rest of their lives.)

Sorry.  I know.  I can be kind of a downer.

I guess you could have told me about the extraordinary and unique parenting skills I was going to gain because of my special needs children.  They aren’t necessarily skills that will make my resume shine, but they do come in handy almost every day.

  • I can button a child’s shirt while he jumps up and down and in a circle.  Correctly.  I won’t be a buttonhole off.
  • I can also zip up a coat while said child jumps up and down and in a circle.  And I will only catch his neck skin in the zipper every 4th time.
  • I can diaper a 50 pound child who kicks me in the face and flips over.  And only get mad about it every 4th time.
  • I can hold hands with two squirrely, squirming, super-humanly strong little boys who struggle to get away from me and get my wallet out of my purse and pay for purchases, put away my wallet, put on my sunglasses and get out my keys, all without letting go of either child.  Do I have three arms, you ask?  I’ll never tell, but there’s a reason pictures of me rarely appear on my blog.
  • All moms grow eyes in the backs of their heads when they have kids.  It’s just a biological necessity.   I, however, have a dozen or so eyes that circle all the way around my head.
  • I can feed two wiggly 6 year olds (who don’t feed themselves very well, yet) while simultaneously playing Disney Monopoly with a 3rd grader.  I can also make sure I don’t play too well so that the 3rd grader wins.
  • I can follow a kid on the playground as well as his shadow does, making sure he stays safe and supervising his relations with the other kids.  I’m quicker and more flexible that I look.  And I won’t glance longingly at the other moms who get to sit on the park bench and supervise from a distance, chatting amongst themselves.  At least not constantly.

Wait — there was someone who said something to me that really did make me feel better.  A couple of months after we got the Fragile X diagnosis, my obstetrician took one look at the sobbing, hysterical mess that I was and said, “My God, girl.  You need to be on some antidepressants.”

(Or she said something like that.  I might be paraphrasing a little.)

Have a great weekend!! Don’t forget to enter my giveaway before you leave!

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6 thoughts on “BSOW: First Response

  1. I may not be in the same diagnosis-land as you but I hear you! My youngest has a 16p11.2 microduplication, apraxia, and a bunch of other “labels”, another boy has PDD_NOS, and a 3rd has something that people can’t figure out.

  2. Bonnie, I already knew this about you, but I’ll say it again: You’re bravely honest in your writing, and that’s why I’m one of your biggest blog stalkers. Plus, you know, you’re just plain like-able!

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