Stephen's Journey: May 2018

Wednesday, May 9, 2018

5 Year Kidney Anniversary

Today marks 5 years since Stephen received the gift of life from Kristin Freeman. It feels like a lifetime ago at this point. The story has faded a bit and has been condensed down into a few short sentences. The anxiety and trauma of my pregnancy and Stephen's early years has subsided. The day-to-day worries about health issues and medications and how to's have been replaced with normal 1st grade kid and everyday problems.

I had someone ask me yesterday "is 5 years a big deal for a kidney transplant?" My first instinct was like, "yeah 5 years is huge!" But what she meant was, "does 5 years mean he's cured? Like if you beat cancer and you make it to 5 years in remission, you can be considered cancer free?"

My response was, "No. It's not like cancer. He's not cured, transplant is just a treatment. At some point, probably by the time he's in high school, he will need another new kidney."

But really the answer is every single day is a big deal.

Every day Stephen isn't in the hospital is a win.

Every day that I have to drag him out of the bed in the morning for school is a win.

Every time he puts on his baseball uniform and runs out onto the field is a win.

Hearing him read a book is a win.

Watching him making friends is a win.

Seeing him participate in his classroom or in school activities just like every other kid is a win.

Watching him eat, even if it's complete junk food, is a win.

I could go on and on and on. Nothing is taken for granted. Every single moment with Stephen is a true gift. Sometimes I get so overwhelmed by the thought that it could be taken away at any moment. Nothing is guaranteed. Life isn't guaranteed. So we're living life by our own rules and soaking up every moment and riding it for all it's worth!

Appreciative. Grateful. Happy. Thankful. All words that describe how we feel towards Kristin for what she's done for all of us. We feel that way all the time, but today, we get to really celebrate her and her amazing gift and shout it out to anyone who will listen about what an incredible thing she did to give our son a happy, normal, healthy life. And work hard to try to pay it forward for others.

We love you, Kristin!!

*********************************************************************************

In case you were wondering what we're doing today to celebrate.....

We gave Stephen the option to choose whatever he wanted to do today on his special day to celebrate. I thought for sure it would be Legoland or something crazy like that. Nope. He picked Dave & Buster's. We've never been and he wants to just play arcade games and race cars. So we're going to pick him up around lunch time from school and head to Dave & Buster's for the afternoon. And he's rockin' his new shirt that Daddy got him for his special day :-)

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!!