Baby girl.  Today you are 1.  It seems like just yesterday that after weeks, weeks of waiting and waiting to see what would happen with you, that you were finally born.  All the worry and prayers wrapped up in a tiny little 5 lb 9 oz package.  You were perfect!  OK, so you were missing 1 chromosome, but you had a perfect little heart, a perfect little face, your mama's nose. 

Our healing came, all the while other mama's didn't get their healing.  Our miracle was granted, and I will never understand why us... why you.  You are made for bigger things baby girl.  You will do amazing things.  How I was ever worthy of being your mama I will never know.  I am blessed beyond measure, and I am humbled to have been chosen.

You amaze me every day.  You are standing up to things and cruising around, you have 4 teeth.   Last night you told your daddy you were "awe done" at the end of dinner.  You already hate bottles and love your sippy cup and "real milk". 

Today we celebrate you Lily!  Something I never thought I'd get to do.  God is so faithful!

On your birthday there isn't much more I can think of saying that I haven't already said somewhere over the past year.  So instead I put together this video... chronicling your story.  My wish is that it is shared over and over until it goes viral.  That everyone can know how great is our God!


And don't forget you can still donate in Lily's honor to the Turner Syndrome Society

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.

Today was my "baby" boy's first day of Kindergarten!

It is unbelievable to me that 5 years ago tomorrow (September 5, 2007), after 27 days in the NICU we finally brought him home for the first time from the hospital!  He was a mere 4 lbs 5 oz the day he was discharged.  I can see it all in my mind still when I close my eyes!



"L" - 1 day old - 3 lbs 4 oz

In the first 5 years of his life, there have been so many firsts.  And today was yet another first, and another reminder to his mama that time passes so quickly when we aren't really paying attention.

"L" - 9/4/12 First day of Kindergarten

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.