Happy Birthday My Beautiful Boy!

Tomorrow baby you are going to be 14 years old. You fought hard for this birthday Jack. The year you turned six, you fought hard for that birthday Jack. You entered the hospital for what we thought would be 48 hours. Nine weeks, two surgeries, ten blown IVS, four specialists and one Broviac Port later you came home two days before Christmas. You were not better, they just gave up, sent you home with an invasive port and enough medical supplies for third world country and told me, I was in charge.

Eight months later, I was an unwilling expert at taking care of a Broviac port. That year was behind us. More followed each of them three years apart. And then just when I thought I could catch my breath, the pain was back and we started all over again. This year, the worst by far, hit hard. First off Jack I knew that a picc line infection could be fatal, I was so not prepared to see you that sick. It scared me Jack. I have never seen you like that. For the first time I realized that one day we could be in Vermont, skiing and playing monopoly and 48 hours later you could be in Columbia's emergency room, every monitor available hooked up, fighting for your life.

Your birthdays are hard Jack, you getting closer every year to those statistics. Are you going to be part of the 50% that celebrate your 30th or part of the 40% that never see there 20s. What's it gonna be? Either way, with each birthday we are edging closer to those statistics. The ones that I never like to think about. The statistics I think about only when you are in the hospital or on your birthday.

I know I should feel confident Jack, you have such a strong will, drive and determination. You have never once felt sorry for yourself and in fact never talk about the hospitalizations. You have a love for life and an appreciation for it. Will that be enough?

I know that I am now going to pack your trunk for camp and I am absolutely heartbroken. A week without you? I will miss your smile most Jack. A week just seems so long. If I can not bear the thought of not seeing your smile for a week, how am I ever going to survive...

Stay with me Jack. I will Fix you. I promise.

MY LIFE WITH JACK: My Brown Eyed Girl.

MY LIFE WITH JACK: My Brown Eyed Girl.: "Its been a while. One summer when Jack was four, long before he got really sick, we took a trip. We went for a four day sail on Brown E..."

My Brown Eyed Girl.

Its been a while.

One summer when Jack was four, long before he got really sick, we took a trip. We went for a four day sail on Brown Eyed Girl. She was a beautiful 44 foot sail boat, Drew was our captain and Mimi his wife the main crew. It was the only time that we just brought Jack with us. Mimi and Drew Shea brought their four year old Haley and Jack's bud. Haley like her mother had a very strong spirit and was already an avid sailor. We left Stonington Harbor en route to Newport RI. I have been many times, but coming into Newport on the water... well it was truly something I will always remember. We met up with the a the rest of AYC American Yacht Club from Rye NY. We docked and headed off for a BBQ, Drinks and a great first night.

Jack loved the water. He settled into life on the boat effortlessly. While at the time Jack had been diagnosed with CF and had been to the hospital once, I had no idea that a few years later we were about to sail into the roughest seas ever. I cherish my memories from that trip. Jack new nothing but happiness. Life had been so good. He went to the nature camp. dressed in his button down, and slacks, pushed his red car or anything he could find with wheels, and finally appeared to be potty trained.

I will always remember that time on the Brown Eyed Girls with Jack. Haley and jack bunked in the bow of the boat. They woke up having hilarious conversations. They loved life on the boat. And I must say, we enjoyed nothing but smooth sailing, well until the last day. As long as there was a shower wherever we docked. Mimi liked her shower, and so did I.

My favorite stop was Shelter Island. I learned a lot about boys that stop. We put our anchor down in the bay. Mimi made a call and a gorgeous boy showed up in a launch and took Mimi and me to the Club. We showered and ordered Sea Breezes, the bar tender instructed to have them on deck so we could see the sun set. It was Lord of the Flies back on board. Jack and Haley were jumping in naked, the dads had no control over the situation at all. Jack loved every minute of this freedom. He was so happy, no idea the rough seas ahead.

Mimi and I made our way back and now it was the guys turn to go a shore and shower. Drew tried to fire up the launch from the boat. He was huffing and puffing but he could not get that launch to start. Mimi and I said we could make a call and that cute boy would come back. Drew refused he was going to get to shore on his own. A guy thing. Finally he did. Mimi and I settled in with Jack and Haley. We had wonderful night rocked to sleep by the gentle waves.

It was the last day we encountered some rough seas, and I watched as Drew took the helm and sailed our boat through the current. Jack and Haley, life preservers on, held tight and seemed to enjoy the ride. I had know idea the rough seas that were ahead for me and jack. But like our time on Brown Eyed Girl, Jack handles whatever comes his way.

He loves when the seas are calm. He lives every day like its his last. He is on from the time he wakes up. But when we hit rough seas, he takes the helm, and does what he needs to do to get to calmer seas.

I love my son. I admire him. his strength and courage. I will be here to navigate those seas with him, wherever that is.

Why Me Part II

That is the question I most feared.

Why you Jack? Why were you born with Cystic Fibrosis, a terminal disease that causes your body to die slowly? The mucus that should be thin and watery is not. It's thick and provides the perfect breading ground for bacteria to grow in your lungs. Initially we will fight your infections but eventually, your lungs will have so much scare tissue they will not function.

And in addition you pancreas is a mess. You get recurrent bouts of pancreatitis. Its "the drinking man's disease", the next doctor that jokes lay off the beer, I am going to slug.

We live in a world where if a child is not selected to play Varsity, the parents ask "why us". If your nail polish color is not just right, if you can not get a cab the second you want, if you can not get a reservation at a restaurant you dying to go to, if someone sent you an email you do not want to receive, Why me?

My beautiful boy has spent months in hospitals, gone months without eating, never asked why me?

I love this child with all my heart, I am a better person for having him as my son. I do not have any answer.

Why you jack, my beautiful boy I will promise to love you with all that I am, I will fight this disease with you. I will question doctors, yell at interns and fight the school board on your behalf. There is no answer to your question, why me? but we will fight this Jack, we will fight until no beautiful little boy looks at their mother with tears in their eyes and ask, why me?

Why me?

Tonight, Jack, with tears in eyes, asked for the first time, why me?


Recently we have been trying to decide about whether or not to send Jack to High School. He missed so much of the eight grade. He was sick, he was so sick, he almost died this January. All I could think about was keeping him alive. Since he has been home, his father and I have worked tirelessly to find a new doctor, one more capable of handling Jack. His education seemed secondary to me.

Jack, like his sister, is bright. Sam is a sophomore, She is 3.8 grade point average, AP student, award winning writer, Varsity Swimmming and Varsity LAX. A bit hard to follow.

I want Jack to go High School fully prepared. So repeating, a PG year in middle school, seemed a good idea to me. To him.. Jack wants to stay with friends. He wants to go High School, He wants to be like everybody else.

What do you tell your beautiful boy with a terminal disease, who has seen more pain and suffering. Shown me courage and forgiveness. Why you Jack? My head was spinning. How could I tell him, I have asked that question since the day they told me you had Cystic Fibrosis. I have cried, I have wished it were me. I have been so angry at your disease. I have asked how could there be a God, why would any God would let this happen to my beautiful boy.

I answered Jack's question, why me? I felt he deserved an answer. I told him what I wish many doctors had been honest enough to tell me. I don't know Jack. I wish it were me, I wish I could take this away, make it better, that's what a mother is supposed to do. I know this much is true, I know this is your thing, and you have weathered it with courage, strength, forgiveness and resilience. Those qualities will serve you well going forward.

I also said, that I think there should be an award at school, right along with the athletic and academic awards, you deserve it and you earned it.

Then I hugged him and held him. I told him I loved him and I would always be there, In my heart I was hoping and praying he would always be here. With me, where he belongs. I just can not lose this child. I can not lose this fight. And no mother should have to.

Good night my sweet boy.

Frank DeFord

Jack was diagnosed with Cystic Fibrosis when he was ten months old. Three months later his sister Kate was born, she too has Cystic Fibrosis.

Early on, in an effort to help, I was told so many things. "God only gives you what you can handle", "he will be in a better place". I know they were said to comfort me, but what gave me the most comfort, a book written by Frank DeFord. "Alex, the life of a child". Frank DeFord, a sports writer had child with Cystic Fibrosis, her name was Alex. Alex died after a very difficult fight with Cystic Fibrosis. Alex was seven.

Her father was angry with her disease. His book was honest, open and heartbreaking and it helped me. One story he told about his daughter Alex was my favorite. Alex loved everything to do with princesses (just like my kate), but one day she told her father "Daddy I could never be a Princess". Her father asked "Why Alex". She said daddy my crown would fall off when you give me PT. Pt is something you do everyday to a child with Cystic Fibrosis, you pound on their chests to loosen the mucus, in many different positions, many require them to be upside down. Alex was certain her crown would fall off when she was held upside down for her PT.

Frank continued to lend his name, support, and his experience with Alex long after she had died to raise money for Cystic Fibrosis. I met him a year ago and thanked him for writing his book and told him it helped me. He immediately said "things are so much different now", to try and put me at ease. But they are not. We are members of the same club. The club no one wants to be a member of. We left for the hospital to have a baby that had a wonderful future ahead of them.

So to everyone who has read my blog. Thank you. Make a difference, support children's diseases, you are their hope. They are our future.

Thank you from the bottom heart for all the kind words, emails, all the suppport. You make a difference. You are helping.

Elizabeth Clark

Mother of three beautiful children. Two with Cystic Fibrosis

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