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!

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.

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!