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Friday, November 18, 2011
Tuesday, October 25, 2011
I Will Try and Fix You.
Dear Jack, my beautiful boy.
Its been a while since I have written. I have started this journal when you were hospitalized last December. One of many times. Heartbreaking nights spent in the ER followed by weeks in the hospital and then home with Picc Lines and Ports. You have always shown me how strong, passionate and resilient you are during your hospital stays Jack.
Last spring we made the heartbreaking choice to hold you back, repeat the 8th Grade. Mostly fear that you would be unprepared, you had missed so much school, you had spent too much time in the hospital. The decision broke my heart. Your hospitalizations this time were particularly brutal. Your Picc line infection, which was near fatal, took everything out of you. Your survived Jack, you fought with all your heart and soul.
And your reward, I was holding you back. I was making you stay in the eight grade while all your friends headed off to High School That was your reward for working so hard to get healthy, to live.
Well you headed off to the 8th grade, your sister texted that you looked lonely in the cafeteria. To Sam a popular Junior at Rye Hight this was devastating. You said nothing Jack. Not a world.
Three weeks in to the school year the principal called me into her office. She sat me down and said we needed to talk about Jack. I just sat there ready to fight for you, like I always did. She said "Mrs. Clark we are moving Jack to Rye High". You had straight As and had worked so hard and done so well, everyone at the Middle School was convinced its where you belonged. Tears rolled down my cheek.
My beautiful boy Jack, so far this life has been hard, its thrown so much at you. I have lost count of how many days you have been hospitalized, how many needles, picc lines, IVs, ports you have had. How many times you have been medicated with moraphine for your pain, told you were not going home. Through it all, you have been a shining light Jack. Your only question for the Doctors "When can I go back to the Skate park?" You live life well Jack. You rarely complain, You never take a breath without being grateful for it.
I will spend the rest of my life trying to fix you Jack. I love you with all my heart. I will make sure that the competition you won recently at the skate park will be the first of many. I will fix you Jack.
Love,
Momma
Tuesday, October 4, 2011
If your baby tastes of salt he is not long for this world.
Jack at seven months old had a cold that would not quit, horrible reflux issues had not slept since the night he was circumsized. Finally we had a possible answer. Cystic Fibrosis. But I did not like this answer and went to the internet to prove they had no idea what they were talking about. Not my beautiful boy.
"If your child tastes of salt he is not long for this world."
That night after everyone was asleep, his older sister all tucked in, I sat with jack nursing him and rocking him, I licked his forehead. I did it again just to make sure. It was salty. He tasted like salt. The tears rolled down my cheek as I rocked Jack to sleep that night. And for so many nights to come.
I have not thought about that much till tonight. I went to New York City to a gathering of Doctors, Families, Children and Drug companies to hear the latest about Cystic Fibrosis. There was a new drug, a little blue bill from a company called Vertex. This drug did not address the symptoms of Cystic Fibrosis. It stopped the disease. CF is a progress disease, once it gets some traction, you can deteriorate at an alarming rate. It is a fatal disease, there is no cure. Could this be the call I have been hoping for?
The drugs are gene specific now so for some, the news is very encouraging. Not for me, no good news yet. So I listened to a Doctor tell me the good news for other mothers. I listened to the father making an passionate plea for $50,000. And then there was Emily. Beautiful Emily twenty something, CFer. She was there to talk about how she participated in the trial (she had the right gene) and how effective the drug is. I listened while she talked about feeling better. She was able to breathe, able to go for long walks, workout without losing her breath. Her lung function was improving. Unheard of. Then she said after completing numerous test (all positive) for her doctors, she did her own CF test. She licked her arm when no one was looking, for the first time in her life, she said she did not taste of salt. Thats when I started crying.
For the first time since this journey began. I truly have hope for all the mothers there waiting for their call or waiting for that moment when no one is looking, that they can lick there child's forehead and not taste salt.
Friday, September 30, 2011
She is gone ...
and she is never coming back.
Today someone from the past said "you are not that girl I met 30 years ag .. ".
Well she is gone, and she is never coming back. When I was in college, I was so naive. Simply put, I wanted to have babies and be a mother. In order to accomplish that goal, yes get married. Those were my priorities and in that order. I even decided to date tall guys because I wanted my girls to have long legs.
The father of my beautiful babies is 6'4", my girls have legs that go on forever, and so does my beautiful boy.
For years I lived the dream. I had a beautiful house in Rye, home to my three gorgeous babies tons of wonderful friends with bundles of there own.
My marriage was far from perfect, but that was incidental. I was happy, so very happy. Three babies in three years. I loved being pregnant, I loved newborns and I loved toddlers. Sam my oldest was wise from the start. She hit all her marks way before she was supposed. Thankfully, She was the only one had the time to read What to Expect the First Year. All was going well.
Then Jack my baby boy got sick. He got really sick. I was told again and again there is nothing wrong with your Mrs. Clark other than he has an older sibling at home. Finally my BFF Nikki declared Jack belonged in hospital (she is british) and I took him to a new Doctor. She sent us to Columbia.
Well you know the rest. Jack was sick and the baby I was carrying was too. Life as I knew it would never be the same. Nothing in my past prepared me for my future.
But I have learned is that life is a gift and so are my beautiful children. Sam is a wonderful older sibling. she is great role model, fabulous student athlete and driven. Also she treats them as any older sibling would...
Kate the baby, is my baby. She is a doll. She is the self appointed care taker of her brother. Sweet, smart beyond her years and very sensitive. She reads anything and everything she get on hands on and has a vocabulary four times mine.
Jack, my beautiful boy continues to surprise me with his strength and courage. As anyone who is familiar with this blogs knows .. last year fucking sucked. jack was so sick, hospitalized, sent home with a pic line he missed so much school. But he survived. he lived. He fought. His reward for that, we held him back. So he watched all of his friends go off to High School. He stayed behind.
He did not complain, instead he got As, he worked hard and last week he moved up to HS. He is back with his friends. I teared up when the principal told me this news. I told them, I wish you could see how strong he is when he hospitalized.
I am so off base at this point, so back back to the beginning. That girl is gone, the one in her cute little bright green sun dress. Instead I am here. I am the mother of three beautiful children, two with Cystic Fibrosis. They have given me a purpose, filled my life with love and laughter and taught me there is so much more to life than the right dress.
I am glad that girl is gone. She did not know the first thing about what is really important. I survived and I learned everything that is important in life from my beautiful children. Her Beautiful Boy.
Today someone from the past said "you are not that girl I met 30 years ag .. ".
Well she is gone, and she is never coming back. When I was in college, I was so naive. Simply put, I wanted to have babies and be a mother. In order to accomplish that goal, yes get married. Those were my priorities and in that order. I even decided to date tall guys because I wanted my girls to have long legs.
The father of my beautiful babies is 6'4", my girls have legs that go on forever, and so does my beautiful boy.
For years I lived the dream. I had a beautiful house in Rye, home to my three gorgeous babies tons of wonderful friends with bundles of there own.
My marriage was far from perfect, but that was incidental. I was happy, so very happy. Three babies in three years. I loved being pregnant, I loved newborns and I loved toddlers. Sam my oldest was wise from the start. She hit all her marks way before she was supposed. Thankfully, She was the only one had the time to read What to Expect the First Year. All was going well.
Then Jack my baby boy got sick. He got really sick. I was told again and again there is nothing wrong with your Mrs. Clark other than he has an older sibling at home. Finally my BFF Nikki declared Jack belonged in hospital (she is british) and I took him to a new Doctor. She sent us to Columbia.
Well you know the rest. Jack was sick and the baby I was carrying was too. Life as I knew it would never be the same. Nothing in my past prepared me for my future.
But I have learned is that life is a gift and so are my beautiful children. Sam is a wonderful older sibling. she is great role model, fabulous student athlete and driven. Also she treats them as any older sibling would...
Kate the baby, is my baby. She is a doll. She is the self appointed care taker of her brother. Sweet, smart beyond her years and very sensitive. She reads anything and everything she get on hands on and has a vocabulary four times mine.
Jack, my beautiful boy continues to surprise me with his strength and courage. As anyone who is familiar with this blogs knows .. last year fucking sucked. jack was so sick, hospitalized, sent home with a pic line he missed so much school. But he survived. he lived. He fought. His reward for that, we held him back. So he watched all of his friends go off to High School. He stayed behind.
He did not complain, instead he got As, he worked hard and last week he moved up to HS. He is back with his friends. I teared up when the principal told me this news. I told them, I wish you could see how strong he is when he hospitalized.
I am so off base at this point, so back back to the beginning. That girl is gone, the one in her cute little bright green sun dress. Instead I am here. I am the mother of three beautiful children, two with Cystic Fibrosis. They have given me a purpose, filled my life with love and laughter and taught me there is so much more to life than the right dress.
I am glad that girl is gone. She did not know the first thing about what is really important. I survived and I learned everything that is important in life from my beautiful children. Her Beautiful Boy.
This is me today.
Friday, August 5, 2011
MY LIFE WITH JACK: Thank you Boomer and everyone at BEF
MY LIFE WITH JACK: Thank you Boomer and everyone at BEF: "http://www.clubcysticfibrosis.com/index.php/site/category/caregivers/"
Tuesday, August 2, 2011
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.
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.
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