“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 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.


  1. Beautifully written and such honesty. Liddy, is as gorgeous as ever.

  2. Loved it. I can totally relate!

  3. Loved it. I can totally relate!

  4. And she, her princess and the rest of her family lived happily ever after!

  5. I am facing this with my teenage daughter. First of all to find out that my fourteen year old daughter is pregnant, then to finding out something is wrong. We are hoping down syndrome is the worst. They already at thirteen weeks see heart defects as well. My first thought is how can God be so cruel. As I have prayed and listened to God, I am realizing he/she is perfect just the way they are. He/She is exactly the way God wants them to be...perfect in their own way. Thank you for this. We can totally relate. It is so inspirational!!! Your Liddy is PERFECT;)anybody who reads this, please say prayers for "our" baby as we don't knoe exactly what all we are facing. Thank you-

    1. Anon,
      I too was a teenage mother...almost 17 years ago, I gave birth to a beautiful baby girl who left the hospital with someone else when she was three days old. I can only imagine, as the parent of a teenager now, how devastating my being pregnant was for my own parents.
      Thank you for supporting and loving your own daughter unconditionally and please hold tight to the fact that God is NOT a cruel God. Regardless of the outcome, there are lessons to be learned and quite honestly, a baby born with Ds is the very best thing that could happen to your family. While a diagnosis of Ds may come with additional struggles and occasional heartaches, the joy you will receive in return is so bountiful that its easier to deal with the hard parts. I will for sure pray for your baby...please stop back and keep me updated. :) I can also be reached by email @ heidi_melton@yahoo.com if you want to talk or have specific questions or prayer requests. God be with you...and your daughter...and that perfect baby. :)

    2. Anon,
      Last year at my 19 week ultrasound I was told that something was horribly wrong with my baby. She had a giant sac of fluid on the back of her head, in her left lung, around her heart, and they saw a possible heart defect. I was whisked away to a specialist, who told me my baby probably had some rare genetic or chromosomal abnormality, and had only about a 2% chance of making it to birth alive. I refused an amnio as the results wouldn't have helped, and I didn't care. I left that office and made a plea to the world to pray for me... pray for my baby, and pray people did. I "met" Heidi and Liddy and they prayed and gave me hope. I carried that "dying baby" inside of me until she was 37 weeks and 2 days. She was born the morning of Sept 16th, and everyone in that delivery room was witness to a miracle. Her heart defect was healed in utero, and she was breathing and living. She spent 36 hours in the nicu for observation, and came home with me 4 after she was born. Lily has Turner Syndrome which is a chromosomal abnormality of the "X" chromosome. She is missing one "X" so while Liddy has 47 chromosomes, Lily only has 45. If I have learned anything from my Lily (and of course Heidi and Liddy) it is that the number of your chromosomes doesn't define you! My daugher is 9 months old at the end of this week, and she is perfect! She is exactly as God wants her to be, and he has a very special plan for her. I'd be lying to you if I didn't say that those months while I was waiting to see what was in store for her were not some of the darkest moments of my life, but now nearly 9 months after her birth that pain is gone, and is replaced with an amazing faith in God and love for my daughter. I will pray for your daughter's baby. Please feel free to email me at fatlittlelegs@yahoo.com and also you (and your daughter) can read Lily's story at http://www.fatlittlelegs.com/p/lilys-story.html


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