I haven’t forgotten about you

Little Miss Z, let’s be honest, it’s sort of hard to forget about you, what with your constant kicking and jellybean cravings. So listen up, Lil Jellybean, Momma’s got a secret to share with you.

I love you. Have loved you since the moment I learned you were coming into our lives.

It’s been a more subtle excitement with this pregnancy than it was when we were preparing for your brother’s arrival. Not less excited, just less in-your-face attitude.

You move in my stomach so much more than your brother did; it’s almost as though you don’t want to be forgotten, not even for a second. You have great aim, too, if you’ve been looking to hit my ribs or spine. You are a definite mover.

If your time in the womb is any indication, you’re going to be a lot like your Momma, just like your brother has mimicked a lot of Daddy’s personality traits. The men in our lives are calm, mellow, easy-going. Your Momma has to be kept busy and on the move at all times. My to-do list is always a few pages long and my dream-big list is even longer. I’m stubborn and I have a temper, so I hope you don’t inherit those traits, but I guess we’ll find out soon enough.

We’ve known your name for months now. Well, your daddy knew your name before there even was a you. It’s so fun calling you by your name, so much more real to talk about when ____ _____ will join us. (Psh, we have to keep SOMETHING a secret!)

Your daddy made a video recently about your brother’s first 18 months (Zack’s been a bit of a celebrity hot shot lately… Oh, OK, enough about him, you’re right…) and I can’t stop watching the images in it. I had forgotten about some of those early moments with your brother… the getting-to-know-each-other in a hospital room… your daddy putting a ball in his hands in the first week… the visitors rocking you with love… and those uncoordinated movements of his fingers and neck and legs.

I can’t wait to share those sort of moments with you, Lil Miss.
As exhausting as a newborn can be (And I’m sure it’s even more fun with a toddler hanging around, too), some of my favorite moments came from late-night rocks in the glider and watching little fingers grab at buttons and zippers during feedings. I can’t wait to kiss you on 50 different places on your little face. I plan on kissing both eyelids and both cheeks several times. I will smooch the heck out of the top of your head, too.

So, a recent e-mail tells me you’re about the size of a squash. All that does for me is make me hungry.

There are still a lot of uncertainties. We don’t know when you’ll decide to come see our world; we don’t even know by which delivery method. A lot of that depends on how many jellybeans you’ve really eaten and whether or not you’re really “lil” at all.

We certainly don’t know yet if you’ll be healthy and what that even means anymore. I just know that I will love you with all of my heart, accept your every challenge and quirk and attitude with every fiber of my being. That you will early on realize unconditional love and fierce love and know I have nothing else to give.

You should be head-down on Week 32 of our journey together, but we’ll find out at our next doctor’s appointment and ultrasound in the next week or two. It will be nice to see another picture of your beautiful self.

Speaking of pictures, you better be prepared for some serious camera flashes. Your Momma will be the biggest culprit, and I promise to use natural lighting for as long as possible, but once you get on the move, there’s no holding back for the flash to capture a great shot, OK?

Every day, at least once, I stop by your crib in your nearly-completed room (We need a few decor items and some crib sheets but are almost done getting ready for your debut). I run my hand over the now-empty space six inches above the crib mattress. I imagine I’m running my hand against peach fuzz hair and a rising chest in soft fabrics. If I’m not careful, I get so lost in my imaginings at that crib that I can very easily let 10 minutes pass by without realizing it.

You’re so close to being in my arms. I’m so close to meeting you in person; to counting your toes and thanking all my lucky stars and many blessings that you made it to me and your Daddy and your Big Brother.

Whether you realize it or not, you’re making a difference in this world. You see, your Birth Day is the deadline for a fundraiser your family is doing for the National Down Syndrome Society. We hope to raise… wait for it… $5,000. That money will make a difference in advocacy programs, education and research related to Down Syndrome. It will make a difference not only in your brother’s life and future, but yours as well. It will make our lives even better and even richer and even more rewarding than we could ever imagine. I’m hoping your aunts and uncles and grandparents and cousins and friends and friends of friends and sons and daughters of friends will all want to help you with your mission, especially since your hands are tied, er, stuck in the womb, at the moment.

I haven’t forgotten you at all, Lil Miss Z.
And I love you so, so much.

See you soon!
xoxo
Momma

PS – Get off my ribs, you naughty girl!

I remember Down Syndrome

I remember Down Syndrome, coming into our lives via an awkward conversation in a hospital room, No. 157 to be exact. I was tired, overwhelmed but so blissfully, unbelievably happy with my newborn son chirping from a bassinet just feet away.

I probably couldn’t have stated a single DS fact in that moment; I just thought “bad” over and over and over again.

I remember Down Syndrome, making us apologize to the uncomfortable doctor as if it was his inconvenience we placed in his world instead of the other way around.

I remember Down Syndrome, stunning my husband, my best friend, into a numbing silence for hours. Until he broke down in the dark hours later, dreams of baseball streaming down his cheeks and apologies from him to me as if it was all his fault.

I remember Down Syndrome, a deep secret we held onto in privacy for days before a positive chromosome test gave us no choice but to share, learn, educate, change.

I remember Down Syndrome defeating us for a few days, a few weeks. I remember getting so pissed off one day that this stupid diagnosis was winning; that sympathy cards from strangers were not a proper substitute from Congratulations cards from loved ones. We still had a new baby. We still had a healthy new baby.

I remember deciding, very early on, that Down Syndrome would never beat us again. I remember vowing to defeat it every day for the rest of my life.

And so while the early days of August 2010 destroyed us because of Down Syndrome, we now have March 21 every year to reflect on the normalcy and beauty of our life. We now have the memory of the journey to make us stronger, to carry us through, to make us work harder and spread the word of our amazing son and the power of his big blue eyes.

So this month we’ve shared facts and dispelled myths about Down Syndrome; truths we learned the hard way and first hand.
This week, we created a video of our son and some of our favorite moments — the accomplishments, the giggles, the smiles, the everyday things. I’m so proud of those four minutes, and the words “let my love open the door” repeating over and over as my child smiles at me.

And now today, my two guys are joining me at the local TV station to share our story, Zack’s story. To tell as many people as we can that we have not been beaten, destroyed or even let down by this diagnosis.

When tragedy befalls you, don’t let it get you down. Love can cure your problems; you’re so lucky I’m around.

Zachary had his surgery last week, and as minor as it was, try telling a mother that anything involving a hospital and her son is minor. I was one big hot mess. I couldn’t focus on anything but my hatred of Down Syndrome and the fact that it brought this cheesy, colorful hospital into my world; that we had to go through worries our friends (fortunately) don’t have to experience. I spent two hours in a waiting room trying to go through the motions of a conversation with my husband and the eating of a simple snack. I spent two hours internally cursing the cruelty and unfairness of the hand Zack had been dealt.

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But then I had my little man in my arms; he had wires and IVs and he was having such a tough time coming out of the anesthesia. His heart was racing and the tears couldn’t stop coming. I held him as tight as I could and sang “You are My Sunshine” just like I have almost every night since he was born. I watched his heart rate slow, I felt his fingers work their way through my messy ponytail. And I knew we would all be OK.

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There are some days, I just pull my son close to me and I cry for or about Down Syndrome.

There are some days my heart aches at the realization I may never hear him say “I love you, Momma.”

But he can show me his love. And his love has shown me so much already. His love has made me a much, much better person.

And I will share that love, share these lessons, every day for the rest of my life.

Zachary is the best thing to ever happen to me, to us. And it has everything and nothing to do with Down Syndrome.

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I remember thinking Down Syndrome was the worst thing ever. I remember Down Syndrome having the upper hand.

I threw out every sympathy card; I burned some bridges; I made some changes. I grew my Fierce Love for my son. I let no one get in the way of that love.

I remember Down Syndrome bringing us unexpected support. I remember Down Syndrome bringing us new friends; friends-for-life-because-of-what-we-share.

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I remember when I beat Down Syndrome the first time; when I embraced it instead of shuddered away from it. I remember when we raised $2,000 for the National Down Syndrome Society last year. And the joy and excitement of putting together a new fundraiser in honor of Zack and our growing family this year. (I hope you’ll spread the word and will consider a donation)

I remember Down Syndrome. It’s kind of hard to forget.

But it’s not that “bad” after all.

There’s only one thing that can set you free — that’s my love. That’s my love.

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Let my love open the door…

I have a post all about our experience with Zack’s surgery (he’s doing well, thank you!) and the hospital adventure from this week, but after seeing the final product of something Scott and I have been working on today, I just couldn’t postpone sharing it any longer.

This is an incredibly exciting week for our family. Wednesday is World Down Syndrome Day and we have a few special surprises planned in celebration of this day of awareness and education.

Surprise Number One: Zack’s story is going to be featured on the local TV station Tuesday and Wednesday. The first airing will be either during the 5 o’clock or 6 o’clock news Tuesday on WTAJ (the CBS affiliate out of Altoona) and will consist of pre-recorded information from a taping at our house a week or so ago. The second airing will take place on the same station during the Central PA Live show (4 o’clock show) on Wednesday, along with a live interview. My friend Angie is to thank for this experience — she works at the station, which is a great “in”, but more importantly, as the Mommy of Zack’s Birthday Buddy Chase, I think she understands how important it is to our family to spread awareness of Down Syndrome to as many people as possible.

So set your DVRs and pray my nerves stay intact for just another couple of days. The stations’ website can be seen here.

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Zack and I will be attending the local Down Syndrome support group meeting this Monday night, too (along with our dear friends Julie and Zack’s future prom date Miss Olivia, who have supported us through so, so much). I am really looking forward to seeing some we-get-it friends after a bit of a hiatus since our last meeting attendance (due mostly to my work schedule). This is a big week for all of our families and I’m anxious to see where the future of the group lies.

Perhaps our most exciting news comes from a desire to push it a bit further, really make sure we did all we could to make a difference. We have once again created a donation opportunity to the National Down Syndrome Society in Zack’s name to continue research that will make a positive, incredible difference in our son’s future — and the lives of the hundreds of thousands of others who turn around every negative myth about DS with every heart-stopping smile and told-you-so accomplishment.

(You can find our donation page here, and I’ll be creating a link on the side of our blog’s home page, too). We have set a pretty hefty goal of $5,000, with a deadline of Little Sister’s Birth Day, sometime in mid-May. The funds we raise through your love of Zack will really and truly make a difference; I’m still amazed at all of the things that NDSS is able to accomplish and offer. And I can’t say enough about the support and comfort they’ve brought our family.

So, to jumpstart our donation appeal, I came up with an idea and my handsome hubby executed it even better than I had imagined. It’s a collection of our most private, personal and beautiful family moments these past 19 months, starting with a completed nursery and running through therapy visits, playmates, puppy and kitty time, family lovins, all the way to our first crawl, first standing, first steps and even our recent hospital stay.

It’s four minutes that show that the journey we’ve been placed on isn’t one we were expecting, nor one we had planned for; but it’s a journey that has brought us so much happiness and taught us so very, very much… about love, about success, about the glue that holds us each together.

It’s Z-Man, plain and simple — all his smiles, all his drool, all his happiness that he has shared with us; it’s all of the things he’s taught us that we can only share with others.

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I hope you will spread the word this week about our support group, about our news stories, about our video and our donation page; most important of all, I urge you to continue to spread what you’ve learned from us about Down Syndrome to your loved ones. We can make a difference.

Let Zack’s love open the door…