Wednesday, July 13, 2011
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.
Wednesday, June 8, 2011
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 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.
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.
Tuesday, May 17, 2011
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
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
Monday, May 16, 2011
Wednesday, April 27, 2011
A Night for a Cure
Tonight I am hosting a party at the Rye Road house, to thank everyone for the love and support my family has received especially this past year.
Also I am asking for support for the Cystic Fibrosis foundation. THe CF foundation has made great progress in finding a cure for Cystic Fibrosis. It is also a model for all children's diseases, as raising money is a challenge. Children's disease rarely receive corporate funding. Children with CF do not grow up to be the CEO of coke, they die.
Thirteen years ago today, my ten month old Jack was diagnosed with Cystic Fibrosis, at the time I was five months pregnant, Kate too had CF.
Jack had been sick and we ended up at Columbia Presbyterian Babies Hospital in March 1998. Dr. Quittell took care of Jack that day. In passing she mentioned doing a test for CF. She told me "do not google it, I do not think Jack has it". In fact there was a 95% chance he did not. Being the good Catholic girl I am, I did not.
Two weeks later, after the test came back positive, the first thing Dr. Quittell told me "Liz, many children with Cystic Fibrosis are reaching their 18th birthday". Tears streamed down my cheeks, I had no idea this was a terminal disease.
Of course the first thing I did when I got home was hit the internet. I called Dr. Quittell daily with "cures" I had found. What was I thinking, the top CF specialist in the country, she treats Boomer Eisiason's son, had missed something. She politely took my calls for about a day than she told. "Liz I will call you when there is a cure".
So I started waiting, waiting for the call, waiting to see if jack and Kate would live or die.
I decided early on that I wanted my children to be known as Jack and Kate who have CF, not those two kids with CF Jack and Kate. And we set out to live our lives. But in the beginning, in the dark night, I would rock Jack to sleep and say "stay with me Jack, do not leave mommy". Having a baby with a terminal disease is so terrifying, I was so afraid he would be scared and alone if..
This past winter has been difficult for Jack and my family. He has spent over four weeks at Columbia Presbyterian hospital. Times like these are so difficult on my whole family. Sam my oldest shows such strength and resolve. She is an honor student, an athlete and has my heart. Kate, just 13 months younger than Jack takes over the role of caretaker and companion. She plays endless games of Life, watches every Jack Sparrow move and of course the Simpsons with Jack. And Jack.. Jack has seen more pain and suffering than most do in a lifetime.. yet he is courageous, strong and most off all forgiving. He is so much more forgiving of this disease than I am. He always says.. its not that bad.. i will be out in a few days. And even with a pick line in his arm or a tube down his nose, as soon as he is able he heads off to the skate park.
During Jack's last hospitalization I found myself whispering in his ear when he was asleep. "stay with me. Don't leave me". This time it was not the fear that he would be scared or alone, it was my fear. I do not know how to live without Jack.
There is still no cure for Cystic Fibrosis, all I have is hope. I am surrounded by that hope tonight. I know that I may never get that phone call from Dr. Quittell. But someday, a mother will get that call and this fight will be over and we will have won.
support my family in the fight for a cure: CFF.org Great Strides .. Team Clark Team Leader: Elizabeth Clark
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