“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Saturday, June 30, 2012

The Unseen Joys

If I have learned anything during the last almost 18 months (and trust me. I sure have!) it is to take the time to celebrate every accomplishment. To take pleasure in the smallest thing. To allow my heart those moments of pure joy to rise to the surface and pop out of me like the soap bubbles my Liddy takes so much pleasure in. 
Its sometimes a little strange to look at my life today and realize how very different it all was just a year ago. How far we have all come, despite the major obstacles life has thrown in our path. A year ago, we were still adjusting to this new twist in the plot. We were facing open heart surgery. I was on hiatus from school to care for this little bundle of pure happiness we call Liddy. I often wondered, as did I'm sure many other people, if I would ever make it back to school at all.

Here we are. Miraculously changed. Blissfully happy. 

The last year has stretched me well beyond my comfort zone. I have accomplished things (and watched my daughter accomplish things) that I never would have believed possible. I have learned how strong I am and how determined I can be....and I sure have one tiny girl to thank for showing me what grit and determination really look like.

Can't isn't an option. Its only a matter of digging deep and figuring out how.
The fall semester before Liddy was born shook my confidence. It brought me to my knees more than once. It found me failing for the first time...and being forced to give up (albeit temporarily). It brought a detour in my carefully laid plans. But not an end to the dream........just a new chapter.

Those failures, while difficult to swallow at the time, taught me humility. They taught me acceptance and brought with them a whole new path....a whole new way of life. One with plenty of time to stop and smell the roses...to bask in the sunshine...to soak up the laughter. One with tiny arms around my neck and slobbery kisses gracing my cheeks. One where anything new is worthy of the highest form of celebration.
I've always been chronically impatient. In a hurry to move on to the next big thing. In the midst of the rat race, as well as a player of the comparison game. Liddy has taught me that none of that is important. Its not necessary to be the fastest, the smartest, or the most accomplished. Its enough to just be yourself and relish where you are at any given moment....because the journey itself is infinitely more important than the destination. 
While we may be taking the scenic route, I find that I actually prefer it to the interstate. There is more beauty to be found on the quiet back roads which wander through...eventually arriving at the same place we were headed all along. And while the scenic route may not be quite as quick, it gives us all more time to enjoy being together. And I love that. 
There are a million unseen joys within my heart every single time I look at Liddy's tiny face. While some may be unable to see or appreciate the nuances of a life different than the one we had planned, I understand that sometimes the very best things in life...the most amazing, life changing, beautiful things...can never be planned for at all.

The Songs that Speak to Me....

I stumbled unwittingly across a new musical love this week.
Mindy Gledhill. A woman with a haunting voice, who sings a whole series of songs which seem to be talking specifically to my wee Bugalicious. Love, love, love this woman's music!!! 

In fact, I found the PERFECT song for a future video to celebrate Princess Sassy Pant's happy heart day (which is coming up in 2 weeks!!!). Looking forward to putting together something amazing celebrating one whole year with a healthy ticker.....
This family has been through so much during the last year and I find myself beyond grateful for the small, peaceful moments our lives have become filled with since the day we left Riley, embarking on a brand new life. 
I hope I show my sweet angel every single day how much I love her...and I hope that she knows that, like the song says, 

"You were made to fly, you were meant to shine,
child of light."

Friday, June 22, 2012

Revisiting the Past...

Dearest Lydia,
We're nearing an important anniversary...one that a year ago on this date, I simply couldn't have imagined ever celebrating. The day that I dreaded, that I feared, the cause of many, many sleepless nights spent perched at this keyboard, wrestling with my worries and fighting off my panic. 
Those days are dark in my memory. I couldn't tell you the simple day to day routine of those seemingly endless hours leading up to July 14th because, although at the time I remember trying to drink you in just in case my fears came to pass, I also walked through those hours in a haze of what can only be described as sheer terror, as well as the blurriness that comes from very little sleep.
I spent a whole lot of time watching other babies who had the same surgery, watching them flourish, watching them grow, watching their own surgeries fade behind them. And yet, those babies couldn't provide salve for my own wounded heart and couldn't silence the hiss of my mind which echoed again and again that those babies weren't MY baby and that none of this (Down syndrome and open heart surgery) was supposed to happen to us in the first place. 
Its funny, looking back, how those horrible days of worrying myself sick seem so ridiculous now. We live in a place where these types of surgery, although always considered major and always coming with a chance of complications, have a 90%+ success rate. All I can say is that my mommy neuroses were running ramped and the love I already felt for you brought my worst fears of losing you to the forefront of my already battered mind. 
By the time we came home from our hospital stay, I already knew without a doubt that July 14th would always be a day of celebration in our home. I knew that I would work my entire life to show you exactly how beautiful your scars are to me, exactly how grateful I am that you have them.  And I know that even if I see your perfect heart beating on a screen a thousand times, I will still always get a lump of gratefulness in my throat. You being here with us, alive, healthy, full of energy and joy, is so much a miracle to me that I don't think that if I have a thousand years to live with you beside me and thanked God for the gift of you every single day, it would never be enough......
The transition from infant to toddler has taken me by surprise. It seemed that it happened overnight...you lost your baby face, your spindly baby legs, and your sweet baby personality. You became even sassier, even tougher, even more ornery. You make mad faces. You laugh at what you think is funny and pointedly growl at things you don't find even faintly amusing. You have definite opinions on everything, as you laughingly tear apart the house. And although I knew it would happen someday, that someday seemed still so far away. Until it was here. I'm loving every minute of it. :)

You, my sweet girl, are so much more than I could have ever dreamed of...and so much more than I could have imagined in those dark days before a healthy heart.  I can't wait to celebrate your special day this year, minus all the bells and whistles that kept us from truly celebrating last year. 
I love you more than life, little Bug. 


Monday, June 18, 2012

Memories that Last Forever....

I find that the older I get, the more blessed I feel. I suppose for many the opposite can be said, but as for me, I think with the wisdom of age comes a greater appreciation for the smaller things in life, which somehow lead to more of those big moments in which you are able to look around yourself and think, "This. This is the very best moment of my life so far." 
Strangely enough, those best moments just keep getting sweeter and sweeter.....
This view out of the windows of the condo....

The sounds of kids running around inside it...and tiny faces, like this one,

smiling up at me. 
Quiet mornings watching the moon set on one side of the beach and the sun rise on the other....

Watching my children play on the beach.....

 Silly moments where everyone takes time from their busy lives to laugh, make silly faces, and just enjoy being together.

Quiet evenings, watching my dad and children bond.

Naps in the giant hammock, underneath the quiet rustle of the palm fronds.

All moments that I thought..."It can not possibly get any better than this." And yet, it did. (I wish I could share pics and the story here but unfortunately, right now I can't...no matter how I wish to. If you know me, you know what happened!)
I was sad to go...sad to return to reality. But when I came home, I had received notice that I got accepted into the PN program and will officially be on my way to achieving my dream starting in late August. :) Honestly, best vacation EVER. 

Other vacation highlights....Liddy got two more teeth (molars of course!) and got very adept at transitions. Transition from laying down to sitting, transition from sitting to laying down. Which really just means that she is MOBILE! Into everything, laughing at our exasperated no's, and despite the frustration of constantly dragging her away from things she can't have, this mama is loving every minute of it. :) 

She also added a little bit more attitude to her repertoire but it seems to backfire since her mad faces are so darn cute that we just end up laughing....

I find that I am filing away mental treasures, holding them close to my heart, pondering their meanings for another day, another story down the line. No doubt about it, a whole lot of memories were made during the 10 days we were away...and they are memories that I will carry close to my heart for the remainder of my days......

Saturday, June 2, 2012

Once Upon A Time.....The Story of Us

She will never forget the day she was blessed with a miracle. After several years of various doctors telling the 32 year old woman that it would be “medically impossible” for her to get pregnant, having another baby was a dream that she had just given up on. So on that bright and sunny May morning when the two pink lines showed up on a pregnancy test, despite the evidence, she was in complete and utter shock. Five tests later, she finally conceded that she was indeed going to have a baby. 

The problems with the pregnancy started early, the worry began to set in and the timing of being pregnant really couldn’t be worse. But as she lay in the shadows of a silent room watching a barely six week old angel dance across the ultrasound screen for the first time, the woman was overwhelmed with tears of gratitude and unrelenting love. So when her first triple screen came back with an elevated risk of two potentially serious chromosomal defects, she refused further testing. The pregnancy she had fought so hard for would continue, no matter the outcome.

 She prayed for a girl, a beautiful chubby cheeked cherub that she already had envisioned in her mind. She had a name already picked out, the perfect name for a child who had such big things ahead of her, Lydia Anne, both names taken from the greatest women the woman had ever known. Days passed by in a steady stream of busyness, with plenty of those quiet moments in the ultrasound room watching the tiny bean of previous days transform into a baby interspersed amid the normal routines of life.  With every day that passed, the dreams she had for this precious girl grew bigger and bigger as the unborn baby danced in her ever-expanding belly. 

Then they came, the seven words no expectant parent ever wants to hear. “Something is wrong with your baby’s heart.” As she struggled to grasp the meaning behind those words, she was urged to have an immediate amniocentesis, because this something that was wrong with her precious Lydia’s heart strongly suggested that she had Down syndrome as well. After consenting through tear-choked lips, she watched her baby flitting around the screen in front of her. The tears refused to slow as the thousands of dreams she had for this miracle fell to her feet in ashes.
            The days following were horribly long, filled with unrelenting sorrow intertwined closely with a solid denial. The heart defect was worrying, but she felt that as terrifying as that was, it was something she could deal with. It could be fixed. What she did not believe that she could deal with was Down syndrome, which would be something that must be dealt with for the remainder of this unborn baby’s life. She felt deeply that she was being punished for some prior sin; that the same God who blessed her with a miracle had created that miracle flawed. She spent several days in bed, sometimes sobbing and alternately begging God for a mistake and screaming at Him about the unfairness of it all. When the phone call came and the quiet voice on the other end unflinchingly confirmed, “Your baby has Down syndrome”, it seemed as though time stood still and life as she knew it came officially to an end.
            Trudging dispassionately from doctor to doctor, listening to what seemed like an endless stream of worst case scenarios painted as fact, continued to drag her further down in the pit of her despair. Yet as the days continued to pass, as the stacks of ultrasound print-outs saved in her treasure box grew, each showing the ever changing face that was already very much her daughter, something subtle began to happen. The dark grip of hopelessness began to lose its hold on the battered edges of her heart, and those edges began to knit themselves together. Hope began to blossom like a graceful flower as she communed with the child growing within her. Peace washed over her like the gentlest of waves and she knew that this little girl might have Down syndrome but she was still every bit the miracle her mother at first supposed her to be. She existed not as punishment, but as a gift handpicked by God. Despite the grim prognosis given to her, the certainty that the tiny girl, who already had a beautiful smile and a sassy attitude, was going to be someone truly amazing grew within the woman’s heart. 

  She was told to expect a very tiny baby. She was told to expect her newly born daughter to need immediate medical intervention. She was told to expect at least a two week stay in the highly specialized newborn intensive care unit in the children’s hospital next door to the hospital she delivered at. She was told that tiny Lydia would go into heart failure within the first weeks or months of her life.  Yet on the day that Lydia Anne Ehle made her way into the world, she set out to prove each dismal doctor wrong, one by one. She arrived, chubby, pink and beautiful. Moments after she was whisked away to receive the medical intervention the woman had been told would be necessary, laughter and bubbly chattered echoed across the hall where her daughter had been taken. She arrived in a glass cocoon to see her mama for the first time with a bow on her cradle cap. She spent a little more than 24 hours in the specialized NICU before she was returned to the level 2 NICU at the regular hospital. Best of all, during the long months of waiting for the day she would be forced to hand her precious gift to a surgeon for the repair of her impossibly tiny heart, tiny little Lydia never showed a sign of heart failure. 

            Six months into the new world created by Lydia’s birth, the woman already knew that she could not live without this wee little girl. She fell deeper in love every day. A smile, a giggle, all of the extra cuddles; not one single moment was taken for granted. At six months and 8 days, she handed the baby who had so quickly become her world to a man who would stop her heart, take it in his hands, and make sense from the mangle. The fear the woman felt was suffocating; the tears she had cried and had yet to cry too numerous to count. She didn’t take an entire breath for the eight hours it took before she was again allowed to lay eyes on her daughter. She spent hours beside the light of her life, quiet and still in a metal crib among the beeping monitors and constant bustle of the ICU, waiting for a glimpse of that sunshine smile, for the weight of her slight frame to melt into her once again. She prayed. She cried. She thought. 

 And she finally realized that what had once been the worst thing in the world she could imagine, having a child with Down syndrome, was nothing compared to the thought of having never known her. The woman she had been before Lydia faded away a little at a time from the moment the weight of her had been placed in her mother’s arms for the first time until every vestige had vanished completely. She had been made to be this girl’s mother and everything in her life felt like nothing but preparation for these moments where everything neatly fell into place, finally making sense for the first time.
            16 days later, Lydia was once again snugly tucked into her own bed. The weight that the woman had carried faithfully on her shoulders, worry, fear, heartbreak, finally lifted and real life began. The days settled into a peaceful routine as the milestones slipped past. Firsts followed one after the other, first Thanksgiving, first Christmas, first birthday. Every passing day continued to bring more; more laughter, more joy, more appreciation for every little thing so hard won.

 Everything is a celebration. Every day has become a new gift, bright and shiny with expectation. The woman’s eyes have been opened to a world she had forgotten existed, one full of promise, Technicolor bright, with miracles to be found around every corner. Her world moves at a slower pace these days, but she realizes that she rarely longs for the faster pace of the life that existed before. She has become a better person, a better mother, a better daughter, a better wife. 

  Down syndrome, rather than ending her dreams of a sparkling future, made those dreams bigger, brighter, and left her with the determination to make them happen. Down syndrome, rather than being the end of her life, turned out to be just the beginning of it. Down syndrome, once thought a curse, has truly become the greatest blessing in her life.