The Day My Miracle Began

May 12, 2012

1 year ago today - May 12th, 2011, my world came crashing down around me.

I will never forget the drawing that the doctor made of the sac of fluid that was on the back of my daughter’s head.  For weeks I couldn’t even remember the name cystic hygroma – I kept screwing up the letters and forgetting the exact words to describe her condition.

I will never forget him speaking softly and tell us how sorry he was.  He was a good doctor.  He delivered my son.  He knew of our past, our struggle.  I could tell it was not an easy conversation for him.

I will never forget quickly exiting the office, hoping that no one would see me, and then walking down the stairs of the building to the lobby, holding my breath and finally bursting into tears as we exited the doors into that rainy morning.

I will never forget calling my mother in tears, and telling her we were having a girl, and that something was horribly wrong.  I told her we didn't know anything yet, and to "just pray".  As a mother myself, I cannot imagine what it must have felt like for her to hear the horror and heartache in my voice.

That day was supposed to be a good day.  The day I found out that my baby was a healthy boy or girl.  Instead, that day turned into a nightmare.  One, if not THE, worst days in my entire life so far!

I remember being in Starbucks while we waited for our appointment.  The smell of the earl grey tea with vanilla that seemed to be the only Starbucks drink I could choke down while pregnant.  I remember choking back tears as I gagged on a cinnamon chip scone.  Nothing tasted good to me at that moment.  We sat there and stared at each other, my husband and I.  He, ever the optimist, and me, ever the pessimist, he told me not to worry, we didn't know the full story yet.

If he only had any clue how that story would unfold over the coming months.

I remember driving in my car, in the pouring rain of that unusually cold May day.  I remember hearing Mandisa's "Stronger" on the radio, and hearing the words:

"And you're asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather
When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger"
I cried so hard, I probably shouldn't have been driving.  We drove to the maternal fetal medicine doctor's office.  We got lost.  We sat silently in that waiting room until the nurse called us back.  She explained what was about to happen.  We were going to have an in depth ultrasound.  The tech would tell us all the facts.  Someone would come and interpret those facts for us later.

There was the warm jelly, and our baby girl swimming around again, fluid in her lungs, and around her heart, a giant multi-part sac of fluid on the back of her neck/head.  There were lots of bad things, there were good things too - normal brain, good spine, bladder working.  There were good things.  They gave us a picture of her butt because they couldn't get a good one of her face.  I had that picture of her cute little butt on my fridge all summer.

Next we met Dr. P.  I had no clue at the time how well we would get to know each other.  She was not there to say happy things.  I still have the piece of paper, with all of the possibilities written on it.  I remember hearing the words Turner Syndrome for the first time - I had never heard of Turner Syndrome before.  I didn't want my baby to have  a syndrome - this only happens to old mothers right?  This had to be some horrible mistake.  This is supposed to go well for us!

I remember hearing a chance of around 2-7% that our baby would make it, and Dr. P stating that she thought our odds given the ultrasound facts were on the lower end of that range.  Even though I didn't want a baby with a syndrome, even more I didn't want my baby to die.

There was the question... that dreaded question.  What do you want to do?

There was no hesitation, not even a lump in my throat, I stated I did not want an amnio, I just wanted to carry my baby, to give her a chance, however small it was.  I didn't know on that day that it was going to be hard... really, really hard, for a long time... maybe forever.  Regardless, I do NOT regret for even one second my decision.

I remember driving home, having to give the news to friends and family - our baby was probably going to die.  Worst day of my life! 

Yes May 12... May 12 is a bad, bad day.  And as I've thought about how to deal with this day, my thoughts have been all over the place.  May 12th was not a happy day... not like Lily's birthday is.  But given what happened on May 12th, I've realized that May 12th really is a happy day, because it is the day that God started to heal my daughter.  When I told my mom - just pray, I believe that God started his healing of Lily, and he continued that healing throughout my pregnancy - allowing her to be miraculously born only 4 months later with the least amount of complications we thought were possible. 

May 12th is certainly the day that my bubble burst, but it's also the day my personal miracle was started.  And now, 1 year later, this is what I stared at this morning as I woke up

Photo Credit to LiveLaughLens

It takes my breath away.  May 12th, Lily, is your miracle day.  A day that my life was forever changed.

It became evident to me on that day that God himself created you exactly how he wants you to be.  I hope he and you are patient with me as I am still learning that.  Sometimes I want you to be like other babies to fit into the mold of "normal".  I want you to eat well, have less reflux, grow bigger, grow taller.  But Lily, you are you.  You are exactly as you are meant to be.  I am learning, I am accepting, me, the person who loves to be control, is still learning that I am not in control, I never was in control, and its probably better that way.  He healed you.  He allowed me to hold your warm, fully alive body in my arms - something last May 12th I never thought I'd get the chance to do.

I carried you those many hard, tiring, and emotional month, and now you carry me.  Your laugh and smile are infectious - as everyone who knows you is well aware.  Your smile is a reminder to me to try and just let the non-important stuff go, because I know that is really importannt in life.

Today, I am going to let go.  Let the trauma of my pregnancy go.  That chapter is officially closed.
May 12th, the day that your healing started, the day my miracle began!

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  1. I shed a tear for your journey; for both your joys and pains the past 12 months.

  2. Our daughter wasn't diagnosed until she was almost 5 years old! I felt like my perfect little girl was taken from me and replaced with a special needs child. She is 16 now and it has been hard....very hard....even though she does not have the physical issues many TS girls do. But, she has a mild autistic syndrome, and a slightly lower IQ, with simpler interests. So it's been special ed and now homeschooling since the public school Special Day classrooms are full of boys with all sorts of issues. She is a sweetheart with a simple love for everyone but also struggles with loneliness and boredom and it continues to be hard :( The grieving is never ending as I see her 16 year-old girl cousins enjoying all the milestones she will never reach. But I love her and this is my life -- not one I planned on but the life I was given. Best wishes to you on your journey.

  3. Amen and Amen!

  4. Thanks for writing about your sweat daughter. I followed your blog long before I became pregnant but on April 13th (Friday the 13 no less) my husband and I were told that there was something wrong with our baby. At that time she was just measuring 10 days small and they did not know what was wrong. Our blood results came back 1&46 chance for trisomy 18 so we were thinking the worst. We decided to do the amino so that we would know for sure what was wrong with our baby. A few days later we go the results of Turner's syndrome and I knew from you and your story exactly what it was! Your blog has given me hope and strength to continue this long battle and I want to thank you for this blog. In a months time our daughter has gained 2 days in growth and is looking great otherwise.



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