Saturday, January 14, 2012

Guess What? We're Back!

Wow. It's been months since I posted an update here. This blog is spotted and smirched with cyber mildew from too little use!

Reasons why I haven't updated: too many to list! Primarily lack of time. Today is the first day in a very long time (ie, since the last blog update) that I've been able to make it to the library (my only source of computer web access) longer than the mad dash in to return books and DVDs.

Anyway. Lots have been going on in our little corner of Florida, but before I post a recent update, here's an update I wrote at home about a month ago!

(written sometime circa November 30)

I have NO TIME anymore.

Forget Daylight Savings. Can we please invent a drug that replaces the need to sleep? Either that or put a lot more than one extra hour into the day...

I don't know exactly where all my time goes. Sucked into the fire-flash of the Time Vortex – or wait, that's Doctor Who...

I'm jibbering. Enough.

For not having any time I've managed to find quite a few spare seconds (and minutes, and hours) for worrying about H-man. Some wise mom in blogland wrote that life is enhanced for special-needs parents. Our lows will be aching, crawl-under-the-bed-and-cry lows, but our highs will have us winging over the obstacles like triumphant eagles.

I've been under the bed a lot lately, but I've also stretched my wings.

There's no particular reason for the lows... Hunter is still doing fabulously. His five month birthday on December 6 is dashing toward us, and in the last month my munchkin has mastered:

  1. Rolling! Backward, forward, clockwise, counter-clockwise, any ol' way you prefer. He even showed off for his therapist, and she confirmed his proper form and nice control. Yay! One more milestone right smack on time.

(2) Hand skills! Just today he showed me how "handily" he passes toys from hand to hand, and finished by grabbed the mail from me and crumpling it nicely. He also broke his first dish the other day, when he grabbed it from my hand and flung it across the room. Thus begins a long and infamous career of smashing stuff!

(3) Overall core and body strength. He's able to easily pull himself to a sit by grabbing our thumbs, and he's constantly pushing himself upright in my lap. It's so exciting to see him gain control of his body.

(4) Social skills. Mr. Flirt has always been socially precocious, but he's really gaining lately. He understands humor as well as all the other emotions, and carries on delightful conversations with me. Perhaps his replies are limited to "Oo-ga" and "Argh!" but he puts such inflection into his talking! :)

Perhaps the reason I've walked around with a lump in my throat lately is because I expected life to be so much harder. Life with H-man is a joy, a thrill, and a privilege. I'm thrilled to be his mom, and if this is all Down syndrome has to throw at us: well, BRING IT ON is all I can say!

Deep down, though, I know we've been very, very, very blessed. Last month I cowgirled up and headed to our first Buddy Walk. Don't know where I found the guts, but they got a pretty good pounding that day. Each time I saw a toddler struggle mightily to walk (or crawl) or the frustration in the teenager's eyes as he tried to force his tongue to speak clearly – a fist socked me square in the stomach.

So many families, so many kids have it so much worse than we do. Their reality is hard, and they've had to find acceptance on a much deeper level than we have.

Perhaps that's it. Even while I thumb my nose at Down syndrome I'm scared. Because we haven't walked the dark side yet. We haven't sat outside an operating room, or waited months for every milestone. Fear only found a temporary stay in our hearts.

I think I'm sitting here waiting for the next shoe to drop, waiting for the day Down syndrome decides to make itself known in our lives. And I'm scared. If the other shoe does hit the floor, will I be able to cope? Will I find acceptance?

Will I be able to find this much unquenchable joy in Hunter even if he doesn't progress a day further in his development?

I think so. I hope so.

He just looked over and gave me his cheeky one-sided smile. Oh, I've still got a cold spot in the pit of my stomach. But the love in my heart just keeps burning more and more.

All that I know is that I have one AWESOME little guy who's rockin' this world like nobody's business, and I'm so excited to be setting out on our adventure together.

And here, cuz I know you want them, are some recent-ish photos of my guy!


  1. Hunter sounds like he's doing really well! Hopefully you'll have a better time soon, too!

    1. I'm doing much better this month! Thank you! I hope you're doing ok too!

  2. "I think I'm sitting here waiting for the next shoe to drop, waiting for the day Down syndrome decides to make itself known in our lives."

    This sounds so familiar. At first it was medical & health. By the end of the 1st year, & certainly by the 2nd, I was able to breathe a sigh of relief that, besides very minor concerns, my daughter has been very healthy.

    Then my concern turned to fine & gross motor. So far at age 4.5, K is doing quite well with gross motor & rocking fine motor. She is reading well & doing simple math.

    I am so grateful to be 4.5 years into this journey & still wondering why people say life with DS is hard. I'm sure for some people it is, but I think most of us feel like you - It really is a thrill, a joy & a privilege to parent my daughter.

    You son is adorable btw!

    1. It is SO EXCITING to hear parents of older kids say that!!!! K is such an inspiration!