Achieving the Impossible....

That's right. Look at IDSC for Life's newest poster girl.... :)

Fear..and Other Stressors

I must admit it.

I have been a nervous wreck for weeks now.

Which is not something that my body particularly cares for. I get headaches. My stomach issues kick in. And quite frankly, I quickly become a big ole mess.

Its been an almost constant stream of go, go, go all summer and that trend will apparently be continuing for a couple more weeks, during a time when I really need to decompress and recharge my batteries for the coming onslaught called life with a baby, a teenager, and an in-betweener and the insanity that they call nursing school.

After orientation, I was terrified. Being greeted with the words, "Congrats.","Work your faces off", and "Kiss your social life and your family life goodbye for the next year. We're now your family."is a little scary, to say the least. Especially for a mom who has spent the last several years being a BIG part of her children's lives....from school programs, to doctor's appointments, to therapies, this mama has been there for pretty much every single big event that interrupts her kids' day to day routines. I've been there for every one of Liddy's major milestones (except a few that she showed off to Daddy first and they kept secret from me!). Its a real possibility that the thing we have strove for, that she spends hours of therapy learning to do..walk...is going to happen at some point in the next year when I'm not here..and just thinking about it breaks my heart even now.

I don't want to miss anything.

I want to be a nurse so bad...and it's something I want for the future of my family...but the reality has sunk in that this is the end of my being a stay at home mommy. And that's a pretty hard thing to swallow too, despite the fact that that has been the goal all along.

I guess I've just found myself wishing I was cloned so that I could do it all (anyone know of where I can get one of those?)

It took over a week to get a schedule. A week of checking every day in the hopes that it wouldn't be as bad as I expected, that I would finally have something in front of me which would allow me to make a plan. And eventually, I did. Its a relief. I've become an almost obsessive planner. Now I can make plans....

I can do this. I just needed a reminder, I guess. And today, every time Liddy snuggled in against my leg, every time she hugged me, every time she looked at me, I was reminded that there will always be time for cuddles (I should say that I will always make time for cuddles), she'll still greet me just as excitedly (maybe more so) as she has when I have only been gone 5 minutes, she'll still love me just as much, and that she thinks I really am SuperMom.

Its humbling. That adoration. That trust. That amazing love.

Her example is a big one to live up to. To be so brave, to be so strong, working her tail off to accomplish things that so many believe she can't or won't do, to do it all with such grace and such sheer joy. She sees what she wants and goes for it full tilt, with an impish flash of her gorgeous dimples.

She dances and she sings, and I find myself constantly singing and dancing too. She is completely indiscriminate about who or what she claps enthusiastically for...everything is an accomplishment that must be celebrated, and since hers always are, so are everyone else's.

  She conducts the bands we've been seeing play, mimicking the drum major's every hand movement.

 It steals my breath. Tends to captivate everyone else too.

And all of this got me to thinking...that I may not be SuperMom in reality...that I may miss a few things here and there (although I will still try not to)...that I may not be even remotely worthy at times of the superhero status she gives me...but it's worth a shot to live up to the person I see reflected when I look into her eyes.

I'm convinced it will all work out. We'll take it day by day. We'll do the best we can...and in the end, maybe I can be at least half of the superhero that she really is, as well as the one she thinks I am.

Disabled?

I was born in a small town in a hospital so tiny that I was the only baby in the nursery.

I went to a county school with less than 300 students, mostly farm kids. Middle America at its finest.

 There was little to no cultural diversity to be found and I honestly don't remember ever actually talking to someone with Down syndrome before Liddy was born. Sad to say, looking back, but I'm sure that even had I KNOWN someone with Ds before, I would have been awkward and bumbling in any conversation that I may or may not have deemed worthy of my time.

Down syndrome happened to other people. Not to me. Not to anyone I knew. 

Liddy's prenatal diagnosis floored me. It shook me to my core...and what fell out were a lot of (wrong) preconceived notions. A whole lot of them, most of which I am too ashamed to even admit to thinking.  I didn't understand much, except that based on the way most people reacted, my baby was broken. Broken. In a way that I, despite my SuperMom delusions, could never fix. 

Heartbroken doesn't begin to describe those dark weeks and months that followed. While my husband scoured the internet, searching for faces and stories and positive outcomes, my mind was unable to focus on much more than putting one foot in front of the other, as we moved closer and closer to the day we would be responsible for this little being. I had thought up until that point that I KNEW my daughter already. The fact that she had a broken heart and an extra chromosome made me feel as though someone had been keeping a horrible secret from me for months and had only now chosen to reveal its dark and dire nuances.

Despite my growing doubts, despite my feelings of alienation from the child I thought I knew so well, I couldn't help but love her. Did I pray everyday that a mistake had been made? You betcha. But as time passed and we drew closer to the day that we would meet this miraculous baby, a quiet peace descended in my heart. I might have known nothing about Down syndrome and I may not be able to see the future, but those prayers stopped being about changing her chromosome count and slowly became prayers for her safety, prayers that she would make it until 39 weeks, prayers that she would show the world what a fighter she was from the moment she took her first breath.

I was beyond grateful that all those prayers came to fruition. I was in love (head over heels) from the very first moment I saw her. Suddenly, in the instant it took to hear her cry, to look at her face, I lost sight of Down syndrome and found instead my daughter. My adorable, beautiful, amazingly strong daughter. 

I still had my issues to work through. I can't count the hours I spent in those first days, searching for visible signs of Ds. But in those hours I spent searching her face, I found that the signs mattered less and less. All that mattered was she was here, she was more beautiful than I could have ever imagined, and she fit so perfectly in my arms that it was easy to believe that I had spent my entire life waiting for her to be placed into them.

Blessed beyond measure by this exquisite being. No matter how many chromosomes she had.

Down syndrome didn't change my life. Liddy did.

 She opened doors to a whole new world that I never dreamed existed. She taught me exactly how tough I am, in the midst of being the warmest, cuddliest fighter I have ever known. She renewed my faith. She made me slow down and spend time looking for the tiny every day miracles that my heart skipped past on a daily basis. But most of all, her birth taught me that, despite what the world at large may think, Down syndrome is just a small, minuscule part of who my daughter is. 

 I don't see someone who is "disabled" when I look at her or watch her at play. I see a bright and bubbly child with a mind sharp as a tack and a smile that lights up my world. I see a courageous tiny girl who has faced, with more grace than I could ever hope to muster, things that would bring a grown man or woman to their knees. I see an angel who works so hard to do the things that come so easily to others, but who has the determination to press through the tears and frustration simply because she wants it so bad. She exudes faith and love from every pore...and draws strangers in like a moth to a flame. 

I see grace. I see beauty. I see all of the best traits that God has given humans, all wrapped up one delicate, beribboned package.
She inspires me, and everyone else who knows her, to be a better person...to become someone worthy of being bestowed one of her sunshine smiles or slobbery kisses.

I thank God that children like my own still exist in this world because we would all be missing out on something pretty awesome if they did not.
My life is so much more because of her presence in it.

A Year.....

What a difference a year makes. I've said it what seems like a thousand times....But its true.
Today, the memories of this day, just one short year ago, wash over me....the fear, the doubt, the heartache, and countless hours spent on my knees, begging God for the strength I needed to get through this day and however many difficult days that would follow.
I won't sugar coat and even attempt to say that those days weren't hard, that they didn't push me to the very brink of falling to pieces on an almost daily basis. It WAS hard. It WAS painful. It WAS a test of everything I thought I believed in. I felt helpless at times. I was angry at moments. I cried. A lot.

16 days away from home. More prayers than I have ever said in my life. Hours spent beside the impossibly large metal crib where my sweet girl lie, so impossibly tiny within its confines, covered in tubes and wires.
Like a butterfly emerging from a cocoon, as the days passed, that tiny still baby faded away to be replaced by a whole lot of fiery wing fluttering, all tempered with a whole lot of sass.

 

Those quiet days wrapped in the bubble that was the Pediatric ICU gave me something special that I wouldn't have had without them......time spent focusing completely on my daughter. Days overflowing with drinking her in, without the distractions of the outside world, praising God for the return of rosy cheeks, cuddly babies, and heart stopping smiles.

There are no words for how grateful I am, still. I feel as if every single day, each smile, each bubble of laughter is the most precious gift. At least a thousand times over the last year I have found myself breathless, thinking that that second, that brief moment in time is the most perfect moment I could ever hope for.  If not for this day, none of those moments would exist. 

The scars are fading now, both the ones on Liddy's tiny chest and the ones on my heart.

Yet a trace of both will always remain. And those feelings of awe and gratefulness for her beautiful life will never fade at all. 

This day is every bit as important as the day that Liddy was born. In a very real sense, she was born again today. And so was our family.

Happy 1st re-birthday, sweet angel. We love you so very much!