As I sit here on the eve before my daughter's second birthday, I can't help but feel a mixture of emotions:

I guess it's time to finally tell you that my baby girl is going under the knife first thing on Wednesday morning to have this removed from the back of her head.


Yes... I bet you didn't know that was even there, did you? I've always shared photos of her smile, but not of this, and yet it has been so much a part of who she is for the last 11 months.

This is what is left of her cystic hygroma. This is where they thought her brain was bulging out of her skull.   This is the spot that was viewed on ultrasound 27 times before she was even born.  And this, as far as I'm concerned is the very spot where God healed her.  Physical evidence of the miracle we were granted.  Physical evidence of the immensity of the power and grace... and healing of God.

We've been told more times than I can now remember by doctors, nurses, and other medical professionals that no one has ever seen anything like it.  At first I wondered why... what is it?  What is it there for?  But now I am convinced why no one has ever seen anything like it.  Because babies that have a cystic hygroma so big and so complex as Lily's are not born alive to be seen with it. 

Like I said, the very spot that God chose to heal our Lily.  A spot that has represented for the last 11 months what an amazing answer to pray my daughter is. 

Sometimes we are asked questions.  They usually go something like this:
What is it made of?  Fat and skin we are told. 
Does it hurt her?  Nope.
What is it?  We don't really know.  The best guess is a leftover remanent of her cystic hygroma, and where it pushed against her neck/head as it grew and she grew.

Initially I wasn't used to the stares.  I actually preferred the questions.  It's why I love kids... they are so raw and honest.  I remember the first time that one of my son's friends approached us to ask about it.  It was at the Thanksgiving feast at his daycare.  "What is that?", he blurted out.  I told him it was just an extra spot that she was born with.  Next he asked, "Does it hurt?"  I quickly told him no, and he simply looked and me and said, "OK," and continued eating his mashed potatoes!  He asked his questions, and moved on, as if it was no big deal.  I wish adults could act that way sometimes.

Finally I got used to the stares.  I remember when I used to make sure her head was always facing the back of my arm, so no one would see.  At some point, I gave that up, and scolded myself inwardly for being critical of my own daughter.  She is who she is, and she is a miracle.  If people ask me these days, I simply tell them "Its just the way God made her." 

Over the last 11 months I've sort of become attached to the spot.  The miracle spot.  After Wednesday, it will be strange to find a Lily without her spot.  It is so much a part of who she is.  I've come to realize that I will actually grieve the spot when it is gone.  I know... that sounds so strange, but imagine your child being born with something, living with it for 11 months and then having it taken away within a couple of hours... maybe you can't imagine, and my fingers can't quite find the words right now that I'm looking for.

I know by having it removed though that we are doing the best thing for Lily's future.
Her hair will eventually grow long enough to cover the spot, and just like that the physical evidence of it will be gone. 

I however, will raise my daughter to know about her spot, and to remember what it represents - what it stands for - the miracle of life and the power of God.

Please pray for us this week as our daughter undergoes surgery.  Pray for peace for us, the skill of the surgeon, and healing for Lily.

Goodbye spot... we will miss you!

1 year ago I found out what an encephalocele was...
I year ago I was told that it was likely that my baby's brain was growing out of the back of her head through a hole in her skull...
I year ago today I'll admit I wasn't hopeful, and yet, I was still praying and trusting for "my" miracle...

What a difference a year makes!


I got "my" miracle!  There is certainly no hole is this baby girl's head.  She is "talking"  mama, dada, ball, she is crawling, she is thriving!

And we are so glad that our God is greater, our God is stronger!  And that doctors are earthly and as such, sometimes wrong.

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


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


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!

I have the pleasure of sharing another guest post with you today from Kirsten, whose daughter Sienna is featured in my beautiful butterflies post, and who shared with us last week her struggle with the infertility aspect of Turner Syndrome.  I am so thankful for Kirsten sharing her feelings with us, and giving me a little break from writing for a few days.

A Butterfly or a Grizzly Bear?


And the TSSUS symbol for TS is a butterfly. As Sarah writes in her blog:

“The butterfly is the Turner Syndrome symbol.　 The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for our girls.　 I think it fits so well because butterflies may at first glance　appear fragile, but are truly strong and beautiful, just like these girls!”

I like the butterfly and I do get this meaning.  It is positive and supportive.  It is hopeful.

I would be lying though if I also said I liked it all the time. When I really think about this in my life, as it pertains to my butterfly, I think I get defensive. And this is weird – because I am usually the person who gets all this stuff and is OK with it or does not think about it.  But those times it usually does not pertain to me or I get the joke.  And here is why I can say it bugs me.  And it could bug other moms who are like me.

Up until around May or June 2011 I was raising a perfectly normal and healthy child. She was healthy and active and learning and smart and full of life, love and attitude. The attitude part really makes Grandma happy for some reason…but we will not talk about that here.  She was much shorter than her peers but every bit as smart, normal, active and happy as everyone else. Then we did a blood test and found out she has Mosaic Turner Syndrome. Some percent of her cells only contain one X chromosome, and some contain two X chromosomes but one is apparently broken. Of all the things that can go wrong or are more likely found in a TS girl – she has relatively few. She has no heart defects, and no outwardly physical symptoms one would recognize as TS. She does have a horseshoe kidney, she does wear glasses, and she has tubes in her ears (2x times now) because of recurring infections and fluid in her ears that impacts her hearing if left unchecked. That is pretty much the entire list.

Now I have a daughter with TS. OK. Nothing has really changed for me except we now give her a growth hormone shot every day and we have to have a few more doctors appointments every year. She is still the same girl and still so full of life.  I feel sometimes this verbiage around this butterfly symbol is saying there is something defective or substandard about our girls.  I have heard other mothers say they know their daughter will endure the laughter from other children and people as if they are assuming their TS butterfly is already imperfect. To me, there is a sense of faultiness implied here mixed within the support and hope.

Maybe it’s how I trust doctors and go to them to fix the things that needed fixing, and have from a young age.   Maybe it’s the 15 surgeries I have had in the last 14 years and still consider myself　healthy. Maybe it’s the fact nothing a doctor could do to me anymore scares or worries me in the least.  Maybe it’s is my overall personality about this stuff.  It is just a procedure and I know why it’s needed and I do not get overly emotional seeing my baby scared or poked.  Sure, you might be thinking it, but I am not heartless.  I do not like to see her scared and unsure, but I stay calm and we handle it. And I think I am passing this attitude to my child. She was not thrilled about shots as a baby / toddler getting her vaccinations. She is unsure of new doctor appointments and procedures. She was not particularly thrilled the night the nurse came over to teach us how to administer the GH shots and had to get the first one. She is 5.  I get it. But after the first shot - it really has been painless. Her dad and I treat this as putting on your jammies or brushing your teeth, and we do not waver in this.  If anything, we use humor to make it just another thing.

Maybe it’s my defiant attitude – and most people I know would verify this for you - adamantly. I am a fighter, persistent, and most of the time “you can’t” or “no” is just a dare to me. TS is not who she is or what she is. It is something she has. And will always have, but in my mind it does not stop her from doing anything, ever. It does not limit her in any way – except maybe reaching the top shelf without a step stool.  I do not feel I am in denial in any way as well, as I do not neglect any appointment, recommendation or treatment.  I keep an open mind to things that could go wrong and I watch for them. I pay attention to her moods, her feelings, and her behaviors. I am very observant and mindful of what is “wrong” with her and the things that could still appear.

But some days I feel I am raising a grizzly bear, not a butterfly. There is nothing neither delicate nor fragile about her. She is decisive, active, and curious. She is a tough little cookie. She has no problem standing up to me, even when I remind her who the mom is and that we do not talk to each other that way. She has no problem getting what she wants or letting others know she is there. There is nothing in my mind about hoping she will fly on her own – she would do just fine if she moved out today! She is resourceful, smart, adamant, and independent.  She is the same little girl I had before May 2011.

Please don’t get me wrong. I know TS girls come in all varieties and all with unique and different conditions or symptoms.  I would never discredit or make light of the struggles others go through and what they had to deal with.  Some TS girls can have very serious issues and this is devastating to a family.  At the very least, it is hard on any family.  There are things which go wrong that do cause tough emotions to surface and difficulties for the girls.  We all have different lives, thoughts, abilities and concerns.  For me, the days it pops into my head that only 1-2% of babies conceived with TS actually make it to a live birth and if there are not 15 other things on my mind when, it can stop me in my tracks.  My little grizzly bear is a miracle.  She is here despite the odds.

I also know I am lucky and she is lucky.  I can see the other difficult issues many parents, especially the ones who knew before their daughter was born, had to endure.  These people are strong. They are survivors.  So are their butterflies. I am not bragging nor refuting the TS world with this post.  I am saying for me, there is nothing fragile or need for more hope in my life.  There is no doubt in my mind my little girl will grow up just fine.  I feel this makes us stronger and better able to deal with all the things that are going to happen in our lives that are not good.  This is something that makes her unique, and will help her see the differences in others. This is one more step on the journey we call life.  Whether she is a grizzly bear or just a cute little butterfly, she is still my daughter, the love of my life, and she will grow up as a good person if I have anything to do with it.  Now, we just have another purpose, to share with and help the rest of the world see TS as normal, acceptable, and not the end of the world.　

Dear Lily -

I have been meaning to write this for a couple of weeks now, but when you have a little baby, time seems to get away from you.

Lily, this is the story of... you!  How you came to join our family.  Sometimes things are easy, but having you was not easy.  When mommy was only 6 weeks pregnant with you, she had an ultrasound.  I have never been so happy to see your little heart beating away.  The doctor thought your heart rate was a little slow though, so at 7 weeks we had another ultrasound, and it was beating away at 150 bpm... just perfect, were the words the ultrasound tech used.

Everything after that was uneventful until that horrible day in May when we found out something was wrong with you.  It was supposed to be a special day that we found out whether you were a boy or a girl, but it quickly turned into one of the worst days of my life.  I'll never forget turning to your daddy in the ultrasound room and saying "This can't be good!" when the tech left, and said she needed to go get the doctor.  And at that point in time, I was right, it wasn't good.  Dr. N explained to us that you had fluid in your heart and lungs, and a very large sac on the back of your head called a cystic hygroma.   At that point, I had never even heard of a cystic hygroma before that day.  He made an appointment for us with the specialist, and sent us away with an apology.  I remember sitting outside his office on a bench in the entryway sobbing.  It was supposed to be a happy day.  We were supposed to be finding out your gender, and hearing that you were "just perfect".  That didn't happen that day...  I remember, Lily, that is was raining.  Raining really, really hard!  I remember walking to my car, and not caring that I was getting soaked, because I felt soaked inside too. 

You see, my pregnancy with your brother was difficult.  I was really overweight, and it was uncomfortable and ended in him being born 5 weeks early in an emergency C-section, and needing to spend 27 days in the hospital.  You, Lily, were supposed to be my redemption pregnancy.  Everything was supposed to go perfectly.  You were supposed to be a big baby, and healthy, and not spend more than a couple of days in the hospital, and now we were being told something was wrong with you.

I remember the first time later that day that we entered Dr. P's office for our level 2 ultrasound.  The nurse explained that they would be very honest with us and tell us everything.  She explained that it might sometimes be hard to hear things, and that we would talk to a counselor afterwards.  I felt like I was walking into a death chamber that day, on my way to be executed.  I know that sounds dark, but I want you to know the truth someday when you are old enough to read this. 

Things after that were a blur, but I remember being told that the cystic hygroma on the back of your head/neck was very complicated and very large... as big as your head at that point.  I remember also that they were pretty concerned about your heart, as it had fluid around it.  After the scan, meeting with the counselor we were told it was probably a good chance that you had a chromosomal defect, but there were also chances of a rare genetic condition, or even that I had an infection.  We were not given the scenario where there was a chance that you were fine.  Something was wrong.  Our doctor strongly believed that you may have something called Turner syndrome, which is where part or all of one of your "X" chromosomes is missing.  We were offered an amniocentesis to have a definitive answer.  Your daddy and I decided we didn't want that, as in the end it wouldn't help you, it would only be for us... we did ask, just to make sure.  We were given handouts about in utero death, and we were walked through what would happen if/when  you didn't make it.  The statistics were grim.  We were told there was maybe a 2-7% chance you would survive.  We were told that everyone was really sorry, and we were sent home to grieve you, with a repeat appointment in 3 weeks.

Those next 3 weeks were complete hell for me!  I cried a lot, and walked around in a fog.  There were times I could pretend this wasn't happening... like at work, where I kept busy and could forget for a little while.  But most of the time I wasn't at work I was crying, and trying to sleep.  I wrote this post, a couple of days after our ultrasound, and I reached out to anyone and everyone that would possibly pray for you.  3 weeks finally passed, and we went back to Dr. P where we heard the news that surprisingly things were not any worse.  It was a small victory in a series of what was to be many small victories! 

Sometime after that the cystic hygroma on the back of your head/neck shrunk, but revealed another mass underneath that the doctors thought might possibly be part of your brain growing outside of your head.  We were told there was no way that they would know until you had an MRI after you were born.

Along the way.  I gave myself goals... get to 24 weeks, then 28 weeks.  Get to 30 weeks, get to 34 weeks.... get to 38-39 weeks were Dr. P said that she hoped we'd be doing a C-section.  I always wanted to talk about that, but she just said "Let's see if we get there."  As the weeks went on, I started meeting those goals, and the reality of your birth set in.

On September 15th I had an amnio to see if your lungs were ready.  You were a stinker and moved just as Dr. P inserted the needle, and you got poked in the butt.  Luckily, your lungs were ready, and we headed to the hospital very early the morning of September 16, 2011, so you could be born.  As 8:00 am rolled around I walked to the operating room with a team of amazing doctors, and everyone declared they were there for a C-section.  I declared I was there for a tummy tuck, but no such luck.  After about 20 minutes or so in the OR you were born, you cried pretty quickly.  I just remember that I kept asking how big you were, and I was told they hadn't weighed you yet.  Suddenly someone called out 5 lbs 9 oz!  I was shocked.  We were told you probably wouldn't be over 5.  As they whisked you away to the NICU, I got to see you, for a short minute, and you were amazing and perfect

Mommy and Lily meeting for the first time

It was the afternoon of the 17th of September when a somber doctor entered my hospital room.  She asked if I knew that you had a chromosomal screening.  I said that I did.  She asked if I was ready to talk about the results.  My heart skipped a beat for a moment, as I knew something must have showed up given the look on her face.  She even asked if your daddy was around - which he was not at the time.  I told her it was OK, we could still talk about it.  She then told me that you had Turner Syndrome.  She expected me to breakdown and cry.  I knew she did.  But honestly I was just so happy to have an answer, and honestly Lily, I could have cared less what you had at that point.  I was just so happy that you, the baby that was given barely a chance to live, was alive! 

Lily... you amazed us all. You spent 36 short hours in the NICU, which was the shortest we could have ever hoped for. You passed your cardiology tests, and an MRI showed that the growth on the back of your head was just skin and was not connected to your brain. Your kidneys were cleared as well. 

4 days after your birth, you and I went home together!  I didn't have to leave you at the hospital.  I was amazed and so blessed.
When we brought you home we were a bit shaken.  I have to admit that we were not prepared to bring a baby into our home.  We had been told you would never come home with us, so we quickly had to assemble our pack and play so you had somewhere to sleep.

Adding you into our family was an amazing journey... it was painful and tested our faith, but getting you at the end is the biggest blessing we could ever imagine.

Lily, someday you will find out you have Turner Syndrome.  You are missing an "X", but please know that, that does not limit who you are or what you can do in life.  You will probably be short, but that's OK, we'll get you a step stool and and Aunt Cathy will buy you some killer high heels.  And Lily, you will probably never be able to have a child of your own, but you know what?  You could certainly conceive and carry a baby through in-vitro fertilization or even adopt. 

Lily, know that hundreds if not thousands of people prayed for you before you were even born.  Understand and be amazed at your life and the power and awesomeness of the God that created you.  The God that was so wise to bless us with you and you with us.  He knew we needed each other.  Lily, now that my pregnancy is over and you are here, I would never ever change for a moment that path that brought us to you.  It has profoundly changed me.

Lily, shoot for the stars with whatever you do in life! You are a miracle.  Most of all, never, ever doubt that you were fearfully and wonderfully made.

I have spent many nights in the last few months begging for God to spare my daughters life. We haver certainly received the miracle that we asked for. I don't know why, but it came in the form of a 5 pound 9 ounce bundle. This little girl is here for a reason... She is going to do something amazing. She is sleeping in my room at the hospital right now, and has been since Saturday night. She had about a 36 hour NICU stay. The shortness of it still takes my breath away. Her MRI found no connection between the mass on her head and her brain. Her heart was found to be normal by the Echocardiogram. Her kidney function is normal. Her chromosomes however were found to be missing precisely one "X".

Lily officially has Turner Syndrome and while I'm supposed to feel sad (at least that's what people are expecting from me) I am instead overjoyed by the fact that she made it from my womb into my arms and that after months of waiting we finally have our answer. I feel like I want to go out and have a party!  After months of waiting we have a diagnosis and are ready to move on with our new life.  She is a survivor and we are happy to add her to our family. She has some cosmetic surgery ahead of her and yet she is one of few Turner syndrome girls that does not have a major kidney or heart defect.

Initially we were told they still wanted to do surgery on the mass on her head and I just found out it's canceled... We'll follow up with a cosmetic/general surgeon in a couple of months!

I'm not sure how to process this all right other than to say that if you still don't believe in a God and the reality of miracles and the power of prayers then you haven't yet met my daughter! She is absolute proof of a loving, living God.

By the way... I posted a picture of dear little Lily on Twitter this afternoon. Follow me (@fatlittlelegs) to see it. I will post more photos here once I get home.