Autumn Musings

Indiana. The weather here seems to change in the blink of an eye. One day it's warm enough to wear shorts and t-shirts and the next dawns much cooler, forcing us to break out sweatshirts and jeans. I finally gave up on the hope for summer's return and packed all the warm weather clothes away for the year. The mornings often bring a fresh dusting of frost now and the days grow shorter and shorter. Leaves crackle underfoot, as the trees adorn themselves with glorious colors one last time before a long winter of raising naked arms to grey winter skies.

 

The skies seem especially blue, and the glorious colors of fall's splendor against the earthy browns of freshly plowed fields and technicolor skies brings out the poet in me......

 And although I usually adore the arrival of fall, I find that this year I'm also desperately sad to say goodbye to summer's more fiery temperament. Our family made a whole lot of beautiful, one of a kind memories this summer and even though I know those moments will live on in my heart, and in photographs, I know that our time for having these moments, all of us together, is drawing to a close. We will never again have this summer. After all, some memories are only made once in a lifetime.....

 

 

 

 

Still, amidst all the longing to stop time and hold all these moments close to my heart and never let go, despite my desire to keep my children the age they are now, time does march on. Babies grow up. Teenagers grow ever closer to the day they are adults. As sad as that makes me, I know we're continually making memories together. 

And as long as we're together, I will treasure each one and store them away individually for the days in the future when we're apart. Goodbye summer 2012. I, for one, will miss you dearly.........

Thoughts on the Journey....

I've written a whole lot of posts about my feelings about finding out that Liddy has Down syndrome. I don't think that I need to reiterate to anyone who has read my blog over the last year and a half that it was quite a roller coaster ride, even AFTER she was here and I could hug her whenever I wanted to. If you've been in my shoes, you already know what that is like any way.......

 Over the last almost two years, I have learned a whole lot; about Down syndrome, about Liddy, and about myself. Some of those lessons have been hard as Hell to grasp or to accept. Some of them have been painfully difficult just to live through. There have been days that I hated the fact that my sweet baby girl has to work so hard to do things that the babies around us do with very little effort at all. There have been (so many) heartbreaking losses in the extended Ds family over the last year that some days I almost wish that I never had reason to become a member. My empathetic nature makes it hard for me to not feel deeply for those in pain and there simply isn't an off switch for the emotions I feel when another angel joins his or her 47 chromosome brothers and sisters in Heaven, leaving parents, siblings, family and friends confused, sad and broken here on Earth without them.
Despite all of that, the good days far outnumber the bad ones. And the friendships I have made among my fellow parents in the Ds community are as vital to me as the air I breathe. They provide me with love and support and a healthy dash of reality. They encourage me, not just as Liddy's mom, but as just a woman, trying to balance it all....being a mom, being a wife, daughter, granddaughter, niece, sister and aunt, being a friend and being a student. Quite frankly, some of the women I consider my best friends are women I have never met face to face, which is strange to say out loud, but those women love me and love my daughter every bit as much as I love them and their children. We cheer for each others' kids' accomplishments, we pray together, and we rally around when one of our own is in trouble or in pain. No way would I truly wish to trade in my membership to this little club that none of us knew we wanted to join until we did.
And as for the reason I belong to this club....I couldn't be any more grateful for her. She is truly perfect in every way, even with her premature terrible two tantrums and her hair pulling, face scratching, food throwing naughtiness. She's sassy, she's spunky, she's incredibly smart. The baby who used to shy away from any one who wasn't her mommy or daddy greets everyone she meets with a bubbly "hi" and reaches out to touch them if they get close enough. Our days are filled with ornery giggles and endless rounds of "What's this?" Her vocabulary grows every day and while not so long ago we were serenaded by constant streams of baby babble, now we hear strings of real words....a steady conversation of sorts.

There's no way around it. My tiny girl is growing up. 

And even looking back on the rough times over the last two years, all of those days that I thought I couldn't take one more step, all of the tears I have cried, all of the hours I have spent sitting in waiting rooms or perched beside a tiny body in a huge hospital crib amidst the endless chirping of heart monitors, I wouldn't change a second. All of it, Down syndrome included, has made my daughter who she is and I think she's pretty awesome. When it comes down to it, it's made me who I am too. It's made me more patient, more compassionate, more open minded, more determined. It's made me slow down and evaluate what is truly important in life and what is just, well, stuff. It's made me the kind of mama who cries when her children accomplish things, not because I am sad that they are growing up, but because I am completely, totally overwhelmed with pride in them and every bit as much in awe that they are mine.

Is this the journey I had planned? Not even close. But I gotta tell you that its waaayyy better than what I had in mind. And besides that, when you become a parent, regardless of the circumstances, you learn quite quickly that there are some things you just can't plan for.

Every child is different, unique, an individual, no matter what their chromosome count is. Therefore, the journey is constantly changing. The destination is constantly changing. And the path you take to get there is always changing too. But kids are only little for a short time. So sit back and enjoy the ride while it lasts...........

Photo Drop/Update

I find that my free time is so limited that I rarely have the chance to blog any more. I miss it. I miss all of you.
Nursing school has brought about big changes in our family dynamics. Liddy stays with her Daddy while I go to school. That seems to be really good for her.....she's becoming more outgoing and not such a horrible Mama's girl (not that I minded! lol)
She had her tonsils and adenoids out about 5 weeks ago...on the Friday before school started for me. We had had a sleep study done a few weeks before and apparently, Liddy had SEVERE sleep apnea (like stop breathing every 2 minutes severe!). So her tonsils were removed on an emergency basis. Very quickly. Very unexpectedly. We met with the pulmanologist on Wednesday, the ENT on Thursday, and she was in surgery on Friday. Recovery was rough. REALLY rough. BUT, although I can't medically prove it, that surgery made a world of difference in what we see Liddy being able to do.
Before surgery, any huge developmental milestones came one at a time. Any progress towards something else would come to a complete halt until she "got" the other skill down. In the last 5 weeks, all of that has changed. She started crawling less than 2 weeks out.....and she's into EVERYTHING now! Not only that, her language and signing skills have exploded! She has roughly 15 signs that she knows and can use, and I lost count of how many actual words. She's pulling up to furniture. She's standing to play. And despite the fact that she has never been a fine motor star, she's now pointing, pushing buttons and using a darn near professional pincher grasp.
These last few weeks have been an amazing ride to say the least. :)

Now what you've been waiting for...PICS!

17 years......

Dearest Amanda,

In just a few short hours, you will turn 17. 

You came into this world in the wee hours of the morning...1:37 am....with barely a whisper. You had my heart from the moment I laid eyes on you. 

If I close my eyes, I can almost still feel the weight of you in my arms and smell the sweet aroma of the top of your precious head. I can so easily be transported back to nights sleeping with you cuddled by my side because I knew that our days together were numbered and I wanted as many memories as I could gather to carry me through the many days that lie ahead, days when I would have to walk without you beside me.

Those early days seem so long ago...days when I thought that this day would never come. Days when it seemed that 18 years was an eternity. And now...now, you are the same age as I was when you were born. One year remaining before I may have the chance to truly know YOU, instead of the baby in my memories.

I do not doubt for a second that I did what was best for you all those years ago. I know, unequivocally, that you have a good life, full of everything I could have ever wished for you and a whole lot of things that even my immature mind couldn't have ever imagined. Your life, as seen through pictures, is full...full of love, full of family, full of joy.

I have watched you grow...changing from a tiny baby....

to a beautiful young lady.....

You are more breathtaking with every passing year. 

When I started this journey, I could have never saw myself as the person I am today. YOU are a big part of why I am who I am now. YOU get the credit for motivating me to become a better person, to chase my dreams, to become someone that hopefully someday you'll be proud of.

I know I will never be your mom. I didn't earn it. But I hope that I can always be your friend....... 

Happy birthday, beautiful girl.

I love you. Now and always.

 

 

Why?

I sit at my computer tonight with a heart heavy with grief, heavy with unanswered questions, and heavy with a healthy amount of empathy for yet another family who are left without the light of their lives tonight. It seems the losses keep stacking up, one atop the other. The grieving of our Ds family barely ends before we are grieving again.
I hope Heaven fully appreciates the angels those in our family have sent their way.
I imagine them all gathered together, all those who have gained their wings, laughing and playing, filling Heaven's halls with the sound of their exuberant voices singing. I imagine the crinkly eyed smiles, as well as little feet running. I imagine the angels already in Heaven lining up to greet the newest arrivals....and I imagine Jesus, on His throne, with precious 47 chromosome babies crawling all over His lap. Its a beautiful picture to me....but even that beautiful picture can't stop my heart from breaking or these mamas from hurting in ways that I can't even imagine.

As I laid in bed wide awake last night, Liddy asleep in the pack n play beside me, her sweet breaths called to me. That calling refused to let me go until I had no choice but to scoop her up. As I pulled her as gently as possible out of her bed, she wrapped her chubby arms around my neck and snuggled right in. I spent the next few hours, cuddled in bed with her warm body beside me, talking to God. Thanking Him again and again for this precious being beside me, for allowing me another day to be her mama, for seeing fit to protect her for at least a few hours more. I prayed that He would give me the wisdom to guide my other children with the love and respect they deserve. I prayed that He would continue to show me the path I should be walking, that He would continue to mold me. I prayed for Him to take my fear and make it something beautiful for His glory. I prayed for safe travels for these angels, gone too soon. And I prayed for their mamas, their papas, their sisters and brothers who have been left with empty arms and shattered hearts.
I don't understand. I'm sure that I will NEVER understand. But in the midst of my ongoing dialogue last night some things became a little clearer.....
Ever hear the song "Blessings" by Laura Story? What if Laura has it exactly right? What if we, as humans, have to walk through the dark places, have to cry, have to have sadness, in order to truly appreciate the beauty, the fragility, the fleetingness of happiness? What if we can never truly have one without the other? The yin and yang. Darkness and light. Happiness and sadness. Love and loss. Don't they all sort of go together? Aren't they all sort of a part of life itself? If there was no darkness, how would we recognize the light? If there were no sadness,how would we know when we were happy?  If there was never any loss, how would we grasp the beauty, the freedom, the joy of being loving and being loved in return?
Fear. Fear is an immobilizer. It steals your breath. It steals your freedom. It puts you in chains, the same as being enslaved. In reality, we become slaves...slaves to the things that fear steals away, including our true selves. I think that its normal, acceptable even, to have a healthy dose of fear when something horrific and unexpected happens. Its not the appearance of fear that we need to concern ourselves with. Its the remaining, the allowing it to move in and take up residence in our hearts.
Life is fleeting. Life is more fragile than we truly understand on a day to day basis. But that doesn't mean we stop living for fear of dying. In fact, to me, it means that we have no choice but to take all that life has to offer with both hands and hold on for dear life. Our destinations are always the same...its the journey that truly counts.

RIP sweet angels. Thank you for showing the rest of us mere mortals that life is worth living, no matter how long or short a time it lasts. Thank you for reminding us that everything can change in the blink of an eye and that no one ever knows when the sand runs out beforehand. Thank you for reminding ME of how very blessed I am...and for reminding me who is truly in charge. Thank you for bringing us joy with your smiles. I hope with all of my heart that when I get to Heaven there is a band of 47 chromosome angels to greet me.

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.