Some days I can easily come up with my own words, and some days, things I read so eloquently say what my heart is feeling.  Recently, a fellow Turner Syndrome mom shared this poem, and it so accurately captures my feelings of the last year with Lily. 

Despite everything.  The 18 weeks of living with her growing inside of me, not knowing if she'd live, the reflux, the hundreds of appointments, the sleeplessness nights, the millions of tears cried, and 2 surgeries.  I would not trade Lily for anything.  If I had my pick - I still would have chosen her.



If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "This soul would one day need extra care and needs", I still would have chosen you

If He had told me, "This soul may make your heart bleed", I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you.


And don't forget... Lily is asking you this week if you would please give a small donation - even a dollar can make a difference - to the Turner Syndrome society for her birthday!

The spot is gone!
Lily came through surgery beautifully, and we were home by noon yesterday!  God is so good!

I'd be lying if I didn't admit to having a bit too much fear gripping me yesterday between about 7:30-9:00 am.  I started out so calm, I stood beside her during all of the pre-op preparation.  I signed her life away on the release form, and a nurse held out her hands for my baby.  It all happened so fast, and there they were walking down the hall to the OR with her, and I saw her waving and smiling the whole way, giving doctors and nurses "five".  That was the last time I would see the spot.  The last night I would see my daughter exactly as she was born.

The surgery was projected to take around an hour.  About an hour and 15 minutes in, I suddenly felt like I was going to lose the muffin I had just eaten.  I had about a thousand thoughts rushing through my mind, all of the "what ifs", a lump in my throat, I looked at my husband with fear, and said, "What do you think is wrong?"  Luckily, it was only about 5 minutes of pure panic, until the receptionist came over to me, and said they were in the process of closing up, and the surgeon would be out to speak with us shortly.  It was enough of an update to get me through the next 15 minutes or so, without completely losing it. 

Lily's surgeon was a kind man.  He assured us everything went great.  I had to ask him the question, I so desperately wanted to know.  I asked, "What was it?"  He assured me it was indeed exactly what many doctors before told me it was, simply fat, skin, and tissue that had collected as part of her hygroma.  Likely left when it ruptured around 28 weeks.  He told us that we'd be allowed in recovery in about 10 minutes, and just like that it was pretty much over with.

I breathed for what seemed like the first time that morning.

We waited another 10 minutes or so until we were ushered back to see her.  She lay on the bed all hooked up to wires and an IV.  The nurse introduced himself and said that I could hold her.  I sat down and he handed her to me, and what I saw next amazed me:  the back of my daughter's head, not beautiful and perfect like I had imagined so many times in my head it would look like when the spot was gone, but horrible, and scarred, and bloody, and huge!  The incision ran from the middle of her neck, to the middle of the back of her head, it was oozing puss and blood, it was big- probably 5+ inches long.  I felt my breath catch.  This... this is not what I expected to see.  Even though I knew my daughter was having a large spot removed off the back of her head, I had somehow blocked out the reality of how that would look, and replaced it with an unrealistic image of beauty.

There were a few moments in that recovery room yesterday that I regretted all of it - that I wished I could get that spot back.  That I longed for my baby to be perfect, to be whole, to look less like Frankenstein and more like the Gerber baby.

I know the spot had to go, and I hope and pray that the scar that remains will heal and fade with time - that it will eventually be covered by gorgeous locks of hair! 

We are told that because of the size of the incision she will likely need to have a "revision" done to the scar in the next 6 months to a year.  The skin needed to be stretched just a little too far, and the middle of the scar will eventually pull apart a little too much.  The surgeon will need to cut the old scar out, and create a new smaller scar.

I wanted to be able to move on after yesterday - to put this all behind me.  I was unable to do that fully.  Sure, the back of my daughter's head looks a bit like Frankenstein, but today it has grown on me a little. 

Despite it all I still know that "there are far, far better things ahead than any we leave behind." - C.S. Lewis.  Why?  Because I am a child of God, Lily is a child of God, and as he's proven over and over again, he knows what he's doing, even if I don't.

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!

What are you doing for Easter?  Egg hunts?  church?  fancy dresses?  ham?

Well... I'm going to North Carolina!  And its not really for Easter - although I am visiting some family while I happen to be there.  I'm actually leaving tomorrow (Saturday) morning with Lily, to travel to North Carolina so that Lily can be a in Turner Syndrome study at UNC Chapel Hill.

I have heard nothing but good about Dr. Davenport and her colleagues.  I am so excited to be able to consult with someone who has studied Turner Syndrome for many, many years.  I am so thankful for the opportunity to gather more information, but also for Lily to possible help other girls with Turner Syndrome in the future - as some of the girls that came before her have done.

Sunday I'll be celebrating Easter with a cousin and family.
Monday and Tuesday will be the appointments for the study and we'll head home Tuesday.

Pray for us as I travel alone with Lily.  She had an ear infection early in the week, and is still really congested from a cold she is getting over.  She is already on antibiotics and we have numbing drops and Tylenol in case her ears bother her.

To the people that will be sitting around us on the airplane.  I am sorry.  You will love my daughter, she is smiley and happy, but also VERY unpredictable.  I promise I will buy you a Bloody Mary if you can just be kind and tolerant!

And I would be remiss if I didn't make mention to Good Friday, the day that Christians around the world remember the death of Jesus.  I believe it is through his death and his Resurrection that we are redeemed

How deep the Father's love for us!  Happy Easter!


How deep the Father's love for us,
How vast beyond all measure
That He should give His only Son
To make a wretch His treasure

How great the pain of searing loss,
The Father turns His face away
As wounds which mar the chosen One,
Bring many sons to glory

Behold the Man upon a cross,
My sin upon His shoulders
Ashamed I hear my mocking voice,
Call out among the scoffers

It was my sin that left Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished

I will not boast in anything
No gifts, no power, no wisdom
But I will boast in Jesus Christ
His death and resurrection

Why should I gain from His reward?
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom

I'm going to share something that is hard for me, but I'm ready to share it, and I think sharing it will help me work on it even more.

I'm a comparer.

According to Merriam-Webster compare is:
"to examine the character or qualities of especially in order to discover resemblances or differences.  
"to view in relation to"

comparer is a noun made of this verb.  I checked, because initally I thought I might have actually made the word up.  It would describe a person that does the above.

I am a comparer.
I compare myself to those that are thinner... and those that are fatter.
I compare the speed of my weight loss to before Lily and after Lily.
I compare my "fat pants" to my size 8s.
I compare what I eat now vs. what I used to eat.
I compare the size of my butt to the person walking in front of me.

and I also...
compare the height of my son to those he stands next to in his spring program.
compare his mood one day to the next.
compare the amount he eats to other kids his age.

and then...
I compare Lily's size to other 6 month olds.
I compare the volume of what Lily eats to other 6 month olds.
I compare every single thing that Lily does or does not do... gag, grab toys, make sounds, sit, roll over, length of naps... the list goes on and on to other 6 month olds.
And... I compare her to other girls that don't have Turner Syndrome.
And sometimes, it leaves me feeling sad, empty, and worried.

In fact when I compare about any of the above categories I feel this way.  I feel like I'm not losing weight fast enough - even though in 13 weeks I've lost 15.5 pounds.  I feel like I'll never get back into my skinny pants.  I feel like my son will never eat enough, and yet is much taller than 1 person, and much shorter than another.

I'm a compulsive comparer, and you know what it buys me... nothing!  Nothing but worry and heartache, and often a lot of jealousy (sad but true).

I have to stop.  It never makes me happy.  My kids will always be on the low end of size, and my weight loss appears that it will always be slow and steady.  And no matter how many hours of the day these thoughts take... the thoughts will not change anything.

It is what it is.
And so... I am working on not comparing and not caring about that type of thing.

There once was a little baby.  He was 3 pounds, 4 oz and 16 inches long.  I thought he would never ever get bigger... but you know what?  He did!

"L" All grown up!

And there was once a tiny princess.   She weighed 10 lbs 12 oz for 2 months and her weight never seem to increase, even by 1 ounce.  And her mommy worried and shed many hours of agonizing tears over it, but you know what?  Those tears didn't change anything... and she was happy and loved, so in the end her small size didn't really matter.

My tiny princess!

And then her mommy found out that the tiny little princess for 6 months old was meeting all of her developmental milestones, and the mommy declared the tiny little princess a tiny genius... and for one day, she felt better... until she started the comparison game again.  See... slippery slope, that really in the end means nothing!

Comparison of ourselves or our kids to others... it buys us nothing.  And so, I'm stopping it.  Every time I catch myself doing it... thinking it, I will remind myself that it won't matter... in 5 years, whether my child was 10 lbs 12 oz at 6 months or 20 lbs at 6 months.  Whether she sat by herself at 6 months or 9, 10 , or even 12 months... it just won't matter.  Time is fleeting, so instead of comparing, I will remind myself to sit back and enjoy her just the way she is - at just the size she is.  To enjoy this precious, amazing time and stop the comparing, stop the worrying.

My son has a nightly preschool devotion that we read, and this was last night's:
"You made all the delicate, inner parts of my body and knit me together in my mother's womb.  Thank you for making me so wonderfully complex!      Your workmanship is marvelous—how well I know it"  Psalm 139:13-14 NLT

You know God loves you.  But did you know he loved you even before you were born?  God's the one who made you and put you together inside your mom.  God's the one who decided what color your eyes should be and how long your nose should be.  God made you very carefully so you'd be just right.  And you are!"

OK, that's pretty profound for a preschooler's devotional.  And boy... it spoke to my heart. 

Regardless of how much I compare, God made Lily very carefully so she'd be just right... and SHE IS!!!!!  She is right for her, and not compared to anyone else on earth!

And so... I'm working on giving up my comparer status.  Praying that it is removed from me, and I can come to accept things as is, the way that they are, because they are just right.

I We made it!  It’s the last day of February and Turner Syndrome Awareness month is officially coming to a close.  I first want to thank everyone for reading!  Putting together 29 days of posts has been a challenge, but one that I enjoyed immensely.  I’m certainly glad that February only has 29 days though!  I am so grateful to all of those that helped by guest posting.  My hope is that you learned something new, and that you will be able to use that knowledge, either now or in the future, to help someone else.

In conclusion of this special month, I wanted to talk a moment about what it has been like for me to be Lily’s mother.  It is the new identity that I've taken on over this past year, and it has shaped me and changed my life in countless ways... both good and bad.

This time last year a tiny bean was growing in my belly.

Tiny Bean- 6 weeks

I had amazing hopes for my pregnancy, amazing hopes for her.  I was as healthy as I had ever been, and I was convinced that my pregnancy would go swimmingly.  I was anticipating with joy a normal birth weight baby – after my preemie son was born 3 lbs 4 oz, 4 years earlier.  Innocent friends and family joked that I’d probably have a 10 punder this time.  I actually wanted that!  And yes, I was having a repeat C-section so that was easier for me to say. 

Deep down though I had some fear.  I couldn’t quite put my finger on it, but there was always something in the back of my mind I was unsettled about.  Call it intuiton, or maybe call it PTSD from my previous pregnancy, but whatever you call it, that fear was rationalized at our 19 week ultrasound.  I remember first hearing the term cystic hygroma that day.  For days afterwards I couldn’t even remember how to pronounce that stupid word, let alone begin to understand it.  I also first heard Turner Syndrome that day, was offered an amnio, and was told I could make a decision to terminate my pregnancy if I wanted to.



Despite  being dragged to this place (sometimes kicking and screaming) I am convinced this is my calling.  I am certain of it, and I am validated nearly weekly now.  Last week it was the early invention nurse commenting on what a strong advocate I seem to be for Lily – even though we had only been talking for 5 minutes.  It was the doctor that listened to me about the medication interfering with her reflux, and spending an extra minute with me to let me educate her on some Turner Syndrome aspects.



Now, I’m not saying I’m a patron saint – far be it!  But I do think that God made me with laughter, barely any patience, a strong sense of independence, and yes, some (ok, maybe a lot) of selfishness.  I’ve always been what I’ll lovingly refer to as “feisty”.  I now know that many of my experiences in the past 34 years of life have been grooming me for this moment, and while I never chose this for myself, I accept it, because even in the hardest of times, it is still an honor and a blessing that I’ve been chosen to be Lily’s mom!

So Lily... all of this past month is for you.  I love you... Love, your Mom

Princess Lily - 5 months

Final Note:  I'm tired!  Really tired.  Lily's been sick twice this month, and "L" once.  After blogging for the past 29 days straight, I'm going to be taking a minor break - a week or so - away from blogging to love on my sweet family, and catch up on sleep ... and life.  I'll be back next week!

Its day 2 of Turner Syndrome Awareness month, and I'm beyond excited to share that I've received nearly 2000 views of the Turner Syndrome awareness posts from the past 2 days in just the past 24 hours!  That doesn't count the 500 email and feed subscribers that have also received the posts!  Just think of the people, we've been able to educate.  I am humbled and grateful to other bloggers that have helped me spread the word!  THANK  YOU!

For today, I wanted to bring your attention to this little girl

You remember her, right?

I've added a tab at the top of my page - Lily's Story.  This chronicles in order - from pregnancy announcement (before I even knew of Lily's condition) to Lily's birth story - my pregnancy.  It contains links to all of my weekly pregnancy update posts, and other posts that were significant for me along last years journey.  While that journey has ended - and another type of journey, raising Lily, has begun, I wanted to make sure that anyone visiting here had easy access to it, that it might offer them some peace and hope, or maybe just show them that maybe they are feeling angry and that's OK.  Read it and marvel in the miracle of a Turner Syndrome girl that was part of the 1% that made it. 

To anyone reading this with Turner Syndrome, I hope you realize what an amazing and wonderful miracle you are too! 

I hope when you read Lily's story you will know that God - the God of wonders - is definitely an amazing, loving, and all knowing God.

"God saw all that he had made, and it was very good." -- Genesis 1:31
As I read a devotional this morning, this was the verse that came up.  And while, the devotional was talking about something completely different than the thought that went through my head after I read those words, I felt completely hit between the eyes with this verse.

You see, I have been dealing with some major feelings of failure, self-esteem, inadequacy, ugliness... call it whatever you want it could just be summed up with:  I don't like myself very much right now. 

See, I stepped on the scale this morning, and I'm back to where I was the day I delivered Lily.  Yes, stupid choice to step on it after the Thanksgiving weekend, but I needed the reality check to kick my butt into gear.  I pretty much gave up this weekend, after having worked my tail off for 3 weeks to lose a measly .8 of a pound total, I just didn't have the motivation or the willpower to continue after weighing myself on Thursday morning.  And so, I ate.  I don't like what I see when I look at myself.   I don't like the size on my pants, or the rolls that come over my jeans.  I want to scream and cry when I see that number on the scale.

Then, feeding Lily is just so difficult.  She is now 100% on soy formula, I'm not convinced it is helping but we were told we had to give it 2 full weeks, and we are just a little over a week in.  Some days are better than others, but overall the girl doesn't like to eat!  My husband seems more successful feeding her most of the time than I do, and that doesn't make me feel like a very adequate mom most days.  I thought feeding time was supposed to be a bonding experience, but at our house it is 6-7 times a day of pure stress for me!  I hate that my baby's early months are wasting away with me feeling like this.  We are currently working with both a chiropractor and a speech therapist for her feeding issues.  And for those wondering... I do plan on writing a post about feeding a baby with reflux, I just haven't made it there yet.  As Lily's mother, I just feel there should be something I can do to help her, and I can't, so I feel like a failure of a mother.

Lately, in my house, it doesn't matter what I do, it never seems like I do the right thing.  I say the wrong thing and get in a fight with my husband, or I don't get the cap tight enough on the bottle I'm mixing formula in, and I give myself a tasty soy formula shower.  For the record, it tastes sweet and burns your eyes.  I drop half a casserole in the bottom of the oven, and set off the smoke detectors, or I drop half the insides of a turkey breast on a rug in my kitchen.  Sometimes I wonder when I will get a break. 

I spent more time in tears over the last four days than I have since we found out about Lily at our 19 week appointment.  And while I know that in the scheme of things, these things are the "small stuff", and they will pass, right now they have me feeling like I'm not good enough, not smart enough, and no one likes me, especially myself!

The stress of seeing a number on the scale that scares me half to death, and Lily's often refusal to eat, leaves me as a ball of stress.  Every day I doubt my abilities, doubt myself on being able to lose weight ever again, doubt myself as a mom.  And it adds to the stress.  And when I'm stressed... I eat, and a vicious cycle ensues.  When I eat, I like myself even less, and so I eat some more.

I'm not telling you this so I can get sympathy.  I'm just sharing where I'm at right now.  Right now... I have no big ideas on what to do.  But I can tell you that based on what I read this morning:  "God saw all that he had made, and it was very good."  I, Sarah, was made by God, so... even though I'm not feeling it, I must be good.