Stephen's Journey: One Week Old Today

Tuesday, January 11, 2011

One Week Old Today

Dear Stephen,

Today you are exactly one week old and what a week it's been! You have defied all the odds, defied medicine and science, and have proven to the world that miracles really do happen. You are my angel sent from Heaven to live on Earth. I truly believe that. None of the doctors thought you would live much past birth, if at all. But your Daddy and I never gave up hope and fought tirelessly for you. And then when we thought we couldn't fight any longer, you decided to come into this world kicking and screaming like the fighter that you are.

And for the past week of your life, you have continued to fight and defy the odds by showing you are not a quitter. That you are strong enough to endure broken kidneys for 12 weeks and a 7 hour surgery to remove them. Like your cousin Norah and Aunt Jess say, you are a real-life superhero!!! And a little bit famous too :) People all over the country have been reading about you and praying for you. You are so loved by so many! But no one loves you more than your Dad and I. You have and forever will have every inch of my heart and are the best thing that we will ever do. Your father will forever be your protector, no matter what, and I will always be here for you when you need a shoulder a lean on. Know that there isn't a mountain we won't move to make you better. I know that life won't be easy for you, but we will always be there every step of the way to hold your hand.

I love you more than words can say and I promise that you'll be home very soon! There is nothing that would make me happier than to bring you home and be able to hold you in my arms day and night. And we will get that chance, Stephen, I promise you.

Be a strong boy and keep fighting!!!

Love
Mommy

8 comments:

AnonymousJanuary 11, 2011 at 9:54 PM
Dear Stephen,
Welcome to the family. We know that God has put you here to do something really special with your life. You are truly a miracle and we are looking forward to watching you grow.
Love,
Uncle Dick and Aunt LuAnn
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AnonymousJanuary 12, 2011 at 8:48 AM
Just was led to your blog through a FB friend, and know that you have another person praying for your sweet little boy and your family.
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{darlene}January 12, 2011 at 9:24 AM
beautiful.
praying.....
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ciaraJanuary 12, 2011 at 11:05 AM
a mother's love is crazy powerful - it has made you a bit of a real-life superhero too! Your positivity and resolve has given your son a chance! I will order you a cape "Wonder-Mom"
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Julia RobertsJanuary 12, 2011 at 11:41 AM
Still praying for you and so happy to hear that the surgery was successful and that he is doing well!

He's beautiful!
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NaomiJanuary 12, 2011 at 5:01 PM
Very moving, and I ordered a kidney necklace after seeing the picture on your blog. Whatever is coming, something positive can always be taken away. You have given me strength in our hardest darkest times and though we've never met, your friendship has been invaluable.

Stephen, you are so strong and have given me such hope. You'll never know how much. Whatever happens with my little girl, I will always owe you that.
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RuthWellsJanuary 12, 2011 at 6:12 PM
My friend Leigh (of the PKD awareness jewelry) shared your blog with me, and I just wanted to pass along my good wishes for continued health and strength for your entire family.
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AnonymousJanuary 12, 2011 at 6:52 PM
Lindsey
Your letter to Stephen is beautiful. I know he hears your words and feels your love. You are a remarkable young woman and I know that God is with you and Billy. With a heartful of love and prayers.
Mary Elizabeth Freeman
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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!