Nothing more than a little something cute for a Friday.  My girlie got new glasses this week!  I'm biased but isn't she adorable?!?


She is my WORLD!
Everything I do, I do for her - even losing weight.
It took me 5 years to realize that she needs a healthy mama!  I want to be around to love her, care for her, and see her grow up.  There was a reason she made it, and I know and believe in my heart that God has some HUGE plans for her!  I certainly don't want to miss that.

Lean By 2017!  I'm doing it!  I'm giving it my all!
I'm doing it for me... of course, but I'm doing it for her!
Watch me... or join me!  Let's do this!

I forgot what it used to be like to sit and stare at a blank page and want to write so many things, but it's impossible to get them out of your head and onto the page!  It's overwhelming and yet it feels OH SO GOOD to have this outlet again!  Thank you for those that are reading along again and have already reached out to me.  It has been so fun to reconnect with you!

So where do I possibly even start with where my life has been the last 5 years... there's way too much for you to catch up on.  So I've decided a blog theme day is in order - Throwback Thursday - to recap certain parts of the last 5 years of my life.  I hesitate where to start but maybe I'll start with surgeries.

Not mine, Lily's.

Over a span of less than 3 years my daughter had 7 surgeries... yep 7 - you read that right.  Let's see if I can remember:

1. Ears
2. Ears/Adenoids
3. Hygroma Removal - Back of Head
4. Ears
5. Ears/Sinuses
6. Hygroma Removal - Part 2
7. Ears/Tonsils

Just writing that all seems a little unbelievable.  Sure, I know that there are kids that have WAY more surgeries and most of hers were certainly "routine", but when your baby is going under anesthesia and a knife it takes an emotional toll on you.

First, you pretend it doesn't bother you.  You say things like - oh it's no big deal!  You act brave, you act like it's just "normal".

Then you tell yourself that this will probably be the last one, so just hang in there.  Make it through this and you are golden!

Finally you realize it isn't the last one and the time comes where your preschooler has to stay overnight in the hospital and is in excruciating pain, you sit there helpless and bust out in tears because there is nothing you can do, and this - this awful dark place has become more the norm than the exception!  So you eat 5 brownies with thick, fudge frosting, and half a pizza and wash it down with 7up mixed secretly with Vodka and it dulls your pain - momentarily.  And you gain 8-10 or so pounds.

8-10 - 7 times .... that 60+ pounds of weight you've gained in addition to the 60 or so pounds of "baby weight" you never lost in the first place.  And the world grows a little darker...your clothes grow a little tighter...  your skin is awful because you don't take care of yourself.  You buy one of the biggest sizes of jeans you've ever worn in your life.  You're disgusted with yourself.  Some days you hate yourself.  Your eyes are puffy because you cry more than you don't...

And one day you look in the mirror - like really look in the mirror and take stock of everything and you see this...

Summer 2016

Where this person once stood...

Goal weight - Summer 2010

Every.single.day I am reminded of my failures when I look at myself in the mirror.  Because gaining weight back after a HUGE loss has to be one of the worst things I've ever experienced emotionally.  It's shameful!  I'm still wrapping my head around it.  It's screws with your mind.

This morning - I came across this quote in my timehop on Facebook from before Lily was born


Forget... forget and forgive myself.  The past is the past.  I have no ability to change it or control it.  But I CAN move forward.  We can all move forward.  I'm going to do this!!!  And so can you!

Taylor was diagnosed with Turner Syndrome at birth.

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

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!

It's officially birthday week!  Yes, you read that right.  My baby girl turns 1 on Sunday.  Can you believe it's almost been a year since my baby girl made her miraculous entrance into this world?  It is only because of so many prayers - many from you guys reading this - that Lily was healed and made her very feisty and live appearance into this world.  It's certainly a day I will NEVER forget.  And I'm ready to party!!!

I'd love to "invite" you to a virtual birthday party for Lily.  You can be a part of Lily's special day. 

Lily would love nothing more than if you would take a few moments of your time and a few dollars in your pocket, and in honor and celebration of her first birthday, donate to the Turner Syndrome Society.

It's easy and safe.  You can go here to donate.  Or you can just click the "Donate" button that I've added to the right side of my blog. 

Please feel free to share this opportunity to give back to Lily with friends, family, coworkers, strangers... whoever!  Tweet it, share it on facebook.  This little girl deserves it.  Remember that no donation is too small and even one dollar can make a difference!


Do it for this sweet face.
Lily thanks you and we thank you!

The birthday countdown is officially on!

And if you don't know what Turner Syndrome is please take a moment to read Lily's story.

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.

Dear Lily,

You are 10 months old today!

Honestly, I cannot believe how quickly the time has gone, even as yet some days have seemed agonizingly slow. 

I am so happy that I can finally tell you that I have come to a place - a place of acceptance.  A place where I see you as a smiling, babbling, army-crawling, curious, sometimes-naughty, social butterfly, silky blanket loving, cheese puff eating baby girl, and not as a syndrome when I look at you.

I am almost embarrassed to admit that only a couple of short months ago, I thought endlessly about your missing chromosome.  I tossed and turned at night, thinking about it, and how it was effecting you now and how it would effect you in the future.  There were times that I caught myself apologizing for your petiteness, and trying to explain away the excess skin puckered on the back of your head and neck.  I would find myself in public places trying to keep your head from view of other people, as to not have to deal with the stares.

There were endless days and hours of appointments, endocrinologist, audiologist, ENT, anesthesiologist, pediatricians, ophthalmologist, gastroenterologist, physical and occupational therapists... and I felt sorry for myself when you failed not 1, but 3 hearing tests, when you wouldn't gain weight, when you would throw up time after time, when I had to hand your 11 pound body over for a surgery just 2 months ago.  I felt sorry for myself, I was overwhelmed with the frustration and anxiety that takes its toll on a parent of a child with different needs.  I was exhausted from working full-time and doing ALL of the appointments, and I began to resent you just a little.  And then, I read about some of your TS sisters, and the heart surgeries they had to endure, and I realized that we were so lucky, because the one specialist you didn't need to see was the cardiologist.  God healed the small hole in your heart.  I was humbled.

And I resent myself just a little for sitting through the last 10 months and worrying so much.  For focusing on the number of chromosomes you have rather than the life that was blossoming in front of me.  Now it seems that in only 2 months you'll hit a magic milestone of 1 year old, and your baby days will disappear.  I could have been enjoying you so much more during the time I was worrying, and fretting, and feeling sorry for myself.

But now, I've moved on, and the last month with you has been nothing short of bliss.  I take quiet moments as I rock  you to sleep to touch your skin and hair, to breathe in your sweet scent - to marvel in the amazing perfect creation of your tiny fingers and toes.  I drink in your laughter, and your "ba ba ba ma ma ma da da da" babbles.  I am amazed by your ability to hold anything - and I do mean anything - perfectly with your feet.  I observe an engaging personality starting to emerge.  You wave and smile to everyone and if they don't respond to you, you yell at them.  I just sit and smile and say thank you when they all coo over how cute you are.  I no longer feel like screaming out - my daughter has Turner Syndrome!

I used to think that your chromosome count would matter, but the last 10 months have taught me that you will not be limited by the count of a silly "X" chromosome.  And so, I learned from you and follow suit.

Yes, Lily, I see YOU, 10 months old, amazing toothless smile with eyelashes so long they should be illegal, and not 45 chromosomes sitting in front of me.



And finally... I can say, I wouldn't have it any other way.
Thank you for teaching me that different... is good!

As the wise Dr. Seuss said, "Why fit in when you were born to stand out?"

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.

Time flies when you are having fun busy as all get out!

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!