Stephen's Journey: One Year Ago

Tuesday, October 18, 2011

One Year Ago

One year ago today we received the devastating news about Stephen's kidneys. I started writing a post yesterday about October 19, 2010, detailing all of the events of that day; how we received the news, how we felt, and what we said and did, and what we did next. But as I was writing out all of the details, I got a bit overwhelmed with all sorts of emotions. So I deleted the whole thing. I relive the feelings and memories of that day and the days after almost everyday still and in some ways I need to move on and start focusing on what the future holds for Stephen, Bill, and I and stop dwelling on the past and the what ifs and what we missed. Bill's done a much better job at it than I have and I'm sure for me it will just come with more time; I hope.

So today instead of dwelling on what happened last year, I just want to thank God and who ever else answered our prayers for giving us the strength, hope, and perseverance to keep going when it seemed impossible to keep going and ultimately for answering everyone's prayers and granting us our miracle. He really is the most important and best thing I've ever done and every day I'm amazed at just how much I love him.

And in some small way, I wish our original doctors would remember what happened too and feel bad about doubting Stephen's, Bill's and my strength! Ha!

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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!!