I had always hoped and dreamed to have a daughter (or two) from the time I was very small. Before you were born my thoughts were consumed with how life was going to be when you arrived. As we got the news we were going to have a baby girl I celebrated both in my head and out loud. I dreamed of all of the fun things we would experience together as mother and daughter. I could feel your tiny body growing inside of me and was so anxious to see what you would look like when you arrived.
As the time of your projected birth date grew closer I became more and more excited! You decided to arrive just two weeks early due to some minor complications at the end of my very uneventful pregnancy. As you were drawn out of me into this cold and noisy world you let out a huge cry to let us know you were okay - yet upset to be pulled from such a nice warm womb. You and your dad left the operating room to get cleaned up and ready for us to meet again and for you to meet all of the family and friends who had already arrived at the hospital.
What felt like an eternity later was just over 30 minutes, but we were reunited once again. After you were passed around for a while I got you back safely in my arms. You slept in the bassinet next to my bed and never made a peep. I thought then that you were the most perfect baby in the world. That thought has never changed.
Within hours I was alarmed that you could not nurse and they talked about supplementing you with formula. By the 12 hour mark you had your first suspected seizure. I really didn't even know what that meant. Five days later you were transported by ambulance and a team of people to the closest NICU where you spent 23 more days. This was only the beginning and a small taste of what was yet to come.
Countless tests, MRIs, CT scans, x-rays, blood and urine tests, spinal taps, PICU, medically induced comas, pneumatosis of the colon, countless runs at more than 24 seizure medications, surgeries, sleepless nights, EEGs and so much more and still no answers as to why? Doctors scrutinized every little thing about you trying to pin it to a syndrome, metabolic or mitochondrial disorder. Doctors would look at you and say I think she may have _____, but stay off the Internet and don't Google it. Yeah, right! We were told so many horrible possibilities most of which you would not live past age 3.
We learned just five short months ago the root cause for all of your medical challenges is a gene mutation called SCN2A. A prognosis that does not have a great outcome, yet today you turn 10! This is a milestone worth celebrating!! I wasn't sure we would ever see you turn double digits and here you are with so much life in you and so much more to give!
Emily, you amazing us everyday. No matter how many seizures you have you still have an infectious smile and laughter that lights up a room. You have taught us that life is not always how you planned it, but that the different paths still brings with it so many great things: amazing people, new friendships, a new outlook on life, and an appreciation for each moment of every day. Because of you, we live with no regrets. Because of you, we see the beauty that many people are blind to. Because of you, we live each day as if it was our last together. Because of you, we see life with a whole other light. Because of you, we don't sweat the small stuff. You are our light, our love, our peace and our strength!
On your 10th birthday, we honor you and how perfect you are. We do not live in a world of "what if's", we live in a world of appreciation for the time we have together and the hear and now.
Emily Grace, we are honored to be with you along on this journey and look forward to celebrating so many more milestones (big or small) along the way.
We love you with all our hearts,
Mom and Dad
A poem I wrote to Emily a few years ago on her birthday...
On the day you were born I looked to the sky,
with a joyful tear in my eye.
I thanked the Lord for entrusting me with your life.
I said “welcome to the world, this is your new life!”
I promised to protect you through the challenges you’d face,
But I had no idea just what was in place.
Your body would shake from the seizures in your brain,
I would call out to God to help ease your pain.
I wanted so badly to get rid of the seizures,
So you could have life someday as a “typical” teenager.
Although it was rough for many years,
I always had hope and very few fears.
We almost lost you more than one time,
But you held on to life and showed us you’re fine.
You have taught us so much that I never expected
And showed there’s a lot to learn from the unexpected.
Your beauty shines through both inside and out,
Your love is unconditional and that’s what it is all about.
I wake each morning and still thank the Lord
For my beautiful girl who doesn’t speak a word.
May you continue to shine as bright as the sun,
And I promise to help you have as much fun
As a “typical child” would each day of their life
That is my promise to you each day of your life!
I thank you for all that you have given to me
And want the whole world to know and to see
A beautiful girl who does not walk, talk or move
Is a blessing to all with all that you do!
Today is a day to we celebrate you
And all the gifts you have given with the things that you do!
Until next time....