Wednesday, February 16, 2011


I've spent the past two weeks thinking of how to write this post. Going back and forth on what to say. Each time I come up with a million things I want to say but then they just don't feel right.

I started this blog to give people hope, to put my story out there in hopes that parents with children who have arpkd somehow find there way here and maybe find some peace of mind, some inspiration, some hope, some acceptance and validation. I occasionally am contacted by people who have been affected by this disease. Most recently I was contacted by a mom who had high hopes for her baby, who was diagnosed in utero with arpkd. I shared my experience and passed on my hopes that the doctors were right and the baby would make it. The baby did not make it and I have no words to describe how that made me feel the moment I found out.

She is not the first person to contact me who has lost a child to arpkd but with each e-mail and each devastation I find myself closer and closer to questioning my faith and hope. I can not help but feel guilty for having a child who is doing so well. I write so many posts gloating about him and his success but am I giving people false hope? Am I giving myself false hope?

When I hold Henry close to me my heart just aches for those parents who will never experience that. Its just not fair. My whole life is based around the fact that I believe everything happens for a reason but I can not accept the death of a newborn baby. There is no reason for that.

And so I am torn. How can I make a post about a blueberry smoothie and henry's latest funny thing when the dark side of arpkd rears its ugly head over and over again. Unfortunately this disease is full of highs and lows and I try as hard as I can to live in the moment but every once and a while I get hit with something that shakes my core and I retreat until I can find the words to heal.

So I decided to write a letter to hope.

Dear Hope,
Webster's dictionary names you a verb and states quite simply that you mean trust. Until recently I clung to you but I'm not sure I trust you anymore. Further more I refuse to put your name and trust in the same sentence ever again. You are the reason I get up in the morning, in hopes for a brighter day. You are the reason I started this blog, in hopes for a brighter future. You are the reason I don't give up on my son, in hopes for a cure.

However with the recent events you have not only let me down but a few moms and dads in particularly who deserved much better than you. You have filled me with all the hopes of tomorrow and I now feel guilty inside because you did not do the same for them.

I used to put you on a pedestal with faith but since faith and I aren't on speaking terms at the moment I'm unfortunately left with despair which ironically means to lose all hope.

So if you ever find your way back to me again all I ask is that you have the strength to face the doubt and the questions head on. And as much as I hate you right now for reducing me to tears, I know that when I see that glimmer of you again I'll smile because as Robert Brault said, "It is the first purpose of hope to make hopelessness bearable."

Tuesday, February 1, 2011

Miracles Do Happen

Back in September Henry had an infant PFT (Pulmonary Function Test). It is a non invasive test where he is orally sedated and a vest is placed on him to control his breathing. His lung capacity and function is then monitored, recorded and eventually interpreted. We had the test done because the results of the test would give us an idea of where Henry was and if there were any issues we needed to worry about.

Last year Henry came down with a cold and ended up in the hospital. He was having a really hard time breathing and couldn't keep his oxygen levels up. He was put on a nebulizer and given steroids. During the winter months this is a common thing for all babies and children so we truly weren't sure if he was acting normally or if this was going to be an underlying issue for us every time he got sick.

I finally was able to get a hold of Henry's pulmonary doctor yesterday to get his PFT results. (The fact that I had to wait 4 months is annoying but at this point the results were so amazing I really don't care). When the doctor called me he apologized because he thought he had already shared the results with me. He said, "I've been bragging about Henry to everyone". He then explained that Henry's results were amazing. He has better lung function then a normal person with fully developed lungs.

Say What?? Are you kidding me?? To put this in perspective when Henry was born we had a NICU nurse tell us that they had never seen a baby on ventilator settings as high as Henry. We were at a point where they had no more options and if his lungs didn't respond to the highest settings then there was nothing else they could do. He even had two holes (pneumothoraces) in his lungs due to the high ventilator settings.

So I am writing this post to say miracles do happen. Kids do beat the odds. No matter how bad it may seem it can get better. I have been to the darkest place and through Henry have seen the light. I feel blessed as a human being to be pushed emotionally, to be forced to look inward and search out the good, to learn faith and belief, to never give up.

The most important lesson I have learned on this journey is one that I can not even put into words. When Henry was born I was humbled, I learned that there are forces greater then the human being out there. I learned that life is very fragile. I was instantly changed as a person. Life became more about the connections, about living, and above all about loving. I learned to be selfless and through that have received more from life then I ever imagined. I am thankfully for the child I have and the journey I have gone on with him. He truly is my little miracle.

"Every moment of light and dark is a miracle."
-Walt Whitman