tag:blogger.com,1999:blog-50678540579474301612024-03-05T00:32:51.374-08:00My Life With JackMy name is Elizabeth, I am the mother of three beautiful children, two have Cystic Fibrosis. This is a journal. This is our story. This is Jack's fight.elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.comBlogger80125tag:blogger.com,1999:blog-5067854057947430161.post-53003589424886468052020-03-19T19:02:00.000-07:002020-03-20T05:10:07.316-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
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The 5%, Cystic Fibrosis and the Corona Virus.<br />
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Georgetown sent all their students home in the wake of the Corona Virus Pandemic. Well most. Kate, my beautiful daughter, is staying. You see Georgetown felt their students were safest at home. And for the most part, they are. Kate has Cystic Fibrosis and home is Westchester County NY. The largest cluster of the Corona Virus in the Country. Georgetown decided it was not safe for Kate to come home. Which is heartbreaking.<br />
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Why is the largest cluster of the Corona Virus in Westchester, NY? World travelers, family in China, Italy? No, it is the home of one arrogant lawyer named Lawrence Garbuz, who having traveled through a NYC airport in February, long after the virus was making headlines, got sick. He went on to infect hundreds. I will get back to that.<br />
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My children, diagnosed early on with CF, are no strangers to staying home. I remember when I was first told about how their Cystic Fibrosis would manifest itself. They would get repeated lung infections. The infections would damage their lungs, so much so that their lungs would not function. I came up with the perfect solution, they would never leave the house. I would keep them safe. That worked well until Jack learned how to walk. He walked and then he ran. He ran right out the front door, kate followed and from then on there was no holding them back.<br />
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I learned to try and keep them safe. Relying on those around them to do the right thing. Sick? stay home. Coughing, fever? Stay home. Be responsible.<br />
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I have spent their lives keeping them safe. Jack has struggled, but two months ago went on Trikafta, a life saving drug for those with Cystic Fibrosis. I thought I am home free. And then the Corona Virus hit.<br />
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It only affects the five percent. That is what we were told early on. Let me tell you something about the five percent. When Jack was seven months old, they wanted to test him for Cystic Fibrosis. He had been so sick. I was told "Mrs. Clark, there is a 95% chance he does not have it." He did and he does. So I am familiar with 5%.<br />
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Back to the lawyer. Most families are together during this crisis. Mothers are looking after their children who for the most part are not at risk. I am not. I am mother with a child who is most at risk. She is not here.<br />
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The lawyer, very symptomatic, refused to stay home. He attended three large gatherings in two weeks, a wedding, a funeral and a bar mitzvah. He continued to travel on metro north. He is responsible for the largest cluster in the US.<br />
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To you Lawrence Garbuz, I hope the party was worth it.<br />
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#cysticfibrosis #coronavirus #coronavirusny </div>
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-7675714899087676342020-02-02T12:43:00.003-08:002020-02-10T05:18:10.269-08:00HELLO DARKNESS MY OLD FRIEND<div dir="ltr" style="text-align: left;" trbidi="on">
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Hello darkness my old friend, I've come to be with you again.<br />
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A couple days ago I got a call from Jack's doctor, he had been approved for Trikafta. The game changer as the CF community calls it. The miracle drug. The call I have been waiting for for 22 years.<br />
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Let me back track a little bit. Jack and Kate were diagnosed in March 1998. Diagnosed with Cystic Fibrosis. I remember vividly sitting in the Dr. Quitell's office at Columbia Presbyterian Hospital in Washington Heights. One month early, I had taken Jack ,who was seven months old, to Columbia for a chest x-ray. He had been so sick. Dr. Quitell, by some miracle, was the attending. She was also the head of the Cystic Fibrosis Center at Columbia. She said "I do not think Jack has CF, but I want to do a sweat test. Do not read anything about this in the meantime". I followed orders, I had no idea what Cystic Fibrosis was. Well not until Jack failed the sweat and I was sitting in her office. The first thing Dr Quitell said "Mrs. Clark many children CF reach their 18th birthday now and some go to college." Tears streamed down my face, all I could say "what are talking about?". The rest of that day is a bit of a fog.<br />
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I got home. I hit the internet, I tried to find evidence that she was most certainly mistaken, my son, and my unborn child did not have CF. Yes I was expecting Kate and she too would be diagnosed with Cystic Fibrosis. I called Dr. Quitell daily. Finally, one week in, she said "Mrs. Clark I promise when there is news of a cure, I will call you."<br />
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I am not a very patient person so while I waited for her call, I told our story. My community, my friends, people I never met came out to support our family. They came to walks, golf outings, cocktails parties. Their compassion and willingness to give to this day amaze me. And I am forever grateful.<br />
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Along the way, I met Frank DeFord. He is famous sports writer, his daughter died from CF at 8. He continued to fight, raising money and awareness. I met Boomer Esiason, who had chosen to support Cystic Fibrosis as a player for Cleveland. In a twist of fate, three years later, his son was diagnosed with CF. He has worked tirelessly to raise money and awareness since that date.<br />
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The years were harder than I imagined. Jack is no stranger, to hospitals. Throughout his twenty two years, he shown me how to handle disease with grace, dignity, perseverance, and courage. <br />
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Almost twenty two years to the day he and Kate were diagnosed, I got my call. Well it did not go that smoothy, in the past two weeks there have been a few phone calls, tears, direct conversations, but yes I got my call. Yesterday at 10:30 the Fedex guy showed up at rag & bone and delivered Trikafta.<br />
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Trikafta, it's been called the game changer, the miracle drug, giving most with CF a chance at a future. Why I am terrified? This is it. This is all that is coming in Jack's lifetime. What if it's not our miracle?<br />
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I've been very honest about my belief in God in my blog, depends on what day you are talking to me. Today I believe. I believe in faith. I believe in hope, I believe in love, I believe in thoughts, I believe that collectively, we can accomplish anything if we try hard enough. So take a minute today. Do you know someone battling a life threatening illness, addiction, depression? Take a moment and think of them, believe for them, hope for them. Believe their game changer is on the way too.<br />
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#cysticfibrosis #trikafta #boomeresiason #live #cff #BEF #ccf #cure #fighton #Cysticfibrosisfoundation #tastesofsalt #lungs #lungfunction #vertex<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-28328070025265729582018-08-16T05:08:00.002-07:002018-08-16T05:11:01.885-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
This post is from 2010... This is the beginning...<br />
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This is my story.<br />
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Samantha, 15 going on 25.. nickname HRH. Jack, skateboarder, and Kate always has her head buried in a book. Jack and Kate have Cystic Fibrosis a genetic terminal disease.<br />
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Jack is no stranger to hospitals. At six we learned Jack, in addition to his CF, had Chronic Pancreatitis. He spent 9 weeks in the hospital. He went through numerous invasive tests to try and determine the cause of his Pancreatitis, and get it under control. He was on TPN. He could not eat or drink. Every line they started, failed, he was losing weight, he was in pain and no one seemed to have an answer. He finally had Dr. Stevens from the Adult side of Columbia do an ERCP. There was nothing he could do for Jack. They made the decision to put in a Provac Port and send him home. While this port enabled us to bring him home, if it caused an infection because it was not properly prepared, the infection could be fatal. I was assured we would have round the clock nursing. So we left the hospital one day before Christmas. Round the clock nursing was not available, it would be me, with no medical training whatsoever, that would take care of jack and this port for the next six months. Tears rolled down my face as John, my favorite nurse in the universe, came to my house to show me how to take care of Jack. I was terrified.<br />
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Since then Jack has been hospitalized seven times. This blog will start with the most recent. In early december Jack started to show signs of another pancreatic attach. After being up all night, and a 15 hour stint in Columbia's ER, Jack was diagnosed with another episode of Pancreatits. He spent two weeks in the hospital trying to get it under control. Finally, with no sign of the attach ending we put a Picc Line in. A picc line goes from his arm, through a main vein to his heart. It by passes his digestive system, so the pancreas can rest and heal. Only in the US can you leave the hospital with a Picc line. Whey? If they cause an infection, the infection can be fatal.<br />
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Jack developed a fever two weeks after the picc line was put in. I at first thought, hoped, he had the flu. Two days later and 48 hours into our stay at Columbia's ER Jack was battling a life threateng infection. He had sepsis. I have never seen Jack so very sick. He is currently at Columbia on high doses of IV antibiotics. We are going to attempt a NG tube rather than another picc line (the last one has been removed due to his infection). Through this all Jack amazes me. He is strong and thoughtful and accepting of everything coming his was. 48 hours into our stay at Columbias ER (No beds available), Jack turned to me and apologized to me. I asked why he was apologizing.. he said I am sorry you have to sleep in a chair. I had been strong up until then.. but at that point I burst into tears. I love this child with all my heart, and will do anything and everything for him.<br />
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This blog is not for everyone so stop reading if you do not want to hear how I truly feel. I often wonder how I will ever be able to leave that hospital without Jack. I do not think I can walk out the doors without my son<br />
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BOOKNOTE: This is the first I have read this post in two years. Its hard for me to read this. It brings me straight back to those long nights first in the ER,then in the towers of Columbia Presbyterian Babies Hospital. Let me explain, at Columbia the only way to get admitted is through the ER. The ER is in Washington Heights in NYC. Legally anyone who shows up gets treated. The result, it is a mad house. So when Jack gets sick, we know we are going to spend a time in the ER. My shortest stay was 1 day, my longest was 4. The ER is hell. There is no privacy, very little care provided and no place to go. You sit in a chair, next to your child's bed and wait. Wait for those beautiful "Mrs. Clark we have a bed for Jack in the towers."<br />
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Then its off you go the towers. Its really hard to explain what life is like for a chronically ill child and his family. When I am with Jack I feel guilty for not being with the Girls. When Im the girls I feel guilty for not being with Jack.<br />
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The hardest part for me, in going back to read this blog, through out it all I can feel my fear. My fear that like other mothers before me, I would have to walk out those doors without him.<br />
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I am happy have this. It's a record of our story and there are so many others like us. Its a mothers natural instinct to protect her child at all costs. To be faced with the fact you will lose this battle, its just a question of time is overwhelming.<br />
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I try to be like Jack and live everyday to its fullest, especially the days we are NOT at Columbia. But its not always easy.<br />
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Thank you for reading our story.<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-39411341352309468442018-08-12T17:24:00.003-07:002018-09-04T07:20:03.239-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
<b>It's been a while....</b><br />
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Four years to be exact. He is 21 now. This is a birthday there are times I did not think we would celebrate. I am not saying it has been easy, it has been anything but. Jack came within hours of spending his 21st birthday in the hospital. It is his pancreas. That fucking pancreas that just will not give in. We have been fighting this battle with Jack's pancreas since he was six. That hospitalization lasted 2 months, we left two days before Christmas. Not because was better, essentially they gave up.</div>
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Fast forward twelve years later, two many hospitalizations to count, ports, pic lines, IVs and a lot of morphine we are still fighting. Jack is a rockstar. He is everything I am not, calm, patient and forgiving. He is smart and handsome, can skateboard and snowboard like a pro. He is surrounded by two sisters, a mother, father and slightly over weight lab that adore him.</div>
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I am not forgiving. This time, this last hospitalization, by far the worst. He was on the edge. The pain would not subside. He was knocked out. He was tired. I was broken. I was scared. And I am mad... Fuck CF.</div>
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I have always shared his story. Tonight, this is mine. I am single. I have been divorced for nine years. My ex-husband is remarried. She is lovely. She loves my children. I love my children. I love my lab. I sometimes love my job. It was so difficult for me to trust anyone with my children. So I did not. </div>
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What I do have is a wonderful community of friends that embrace me, Jack and the girls. Their love, support, lego and prayers ... well they have helped. They have helped more than they will ever know. It's lonely. You come home from the hospital and face all your fears alone. So yes something as simple as reading the words... "we are thinking about Jack!" They make a difference.. keep "em coming.</div>
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-16994228287873346422014-12-28T08:49:00.001-08:002014-12-28T10:27:28.824-08:00TWO YEARS AGO TODAY<div dir="ltr" style="text-align: left;" trbidi="on">
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TWO YEARS AGO TODAY</div>
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Two years ago today we were at Stratton in Vermont. Sam, me, Jack and his friend Jake. We had checked into this great condo on the mountain the night before, we woke up to 5 inches and it was still coming down. We parked in Lot 2 and headed to our locker. That day the snow came down at a rate I have never experienced. The whole mountain was un groomed and we were having the ski day of our lives. <br />
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Sam and I battled the snow till 3, exhausted we headed for the condo. Our car, in Lot 2, was buried under 16 inches of snow! Jake and Jack literally took the last lift, just refusing to stop. By the time they made it back we had a fire going. All anyone could think about was what a great day tomorrow would be at Stratton.<br />
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I have been skiing at Stratton since I was 8 and so have my kids. I was so tired of Build a Bear, that I called Stratton Real Estate rented a house for the season and enrolled them all in ski school. They were 6,5 and 4. The first day of ski school, I went to pick Jack up on the magic carpet and very cute instructor told me Jack was on the chairlift. I said, are you out of your mind, it's his first day. They replied, he wanted to go. Jack would probably ask you to go heliskiing if he thought you would let him. You have to learn to say NO to Jack. But there was no stopping Jack. He switched over to snowboarding immediately. I cried as I called the ski school saying Jack wanted to snowboard, sure they would throw him out. The said "Mrs. Clark what ever you drop him off with, we will teach him on." The rest is history. Jack was on that board 40 times that winter and the winters following. He quickly discovered the woods and terrain parks. He was passionate about that board. Which is why what happened next was so devastating. Stratton had always been such a wonderful place for our family. We where there for the week, sixteen inches of fresh snow and more on the way. Looking forward to another great day.<br />
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There was nothing great about the next day. Jack woke me up at 6 am. He was having an episode of Pancreatitis. We, as a family, had dealt with this since he was 6. But this time was different. This had never happened in Vermont. I had a four hour drive home and had no idea how I was going to get him off that mountain. Pancreatitis is excruciating. The first thing they do, hook Jack up to an IV and pump morphine into him. Well most mothers worried about Asprin. I was pumping my son full of morphine from the age of 6.<br />
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Sam took control of packing the car, I called Jack's father and then gave Jack two Motrin PMs hoping the car ride would be bearable and we headed for home. Right away the engine started to overheat. I pulled into a gas station and looked for help. Two woman came to my rescue and filled the car with coolant while I stood there tears streaming down my face explaining had to get my son to the hospital. Once we were on the road again, Sam turned to me and said "Mom you have to pull yourself together!" She was right. <br />
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We got home and I got Jack to the hospital, we had switched hospitals and this was our first stay at Westchester Medical. Getting admitted could take days at Columbia. But Westchester was more efficient. When then nurses took Jack in and asked what was going on, I told them he has Pancreatitis. They did not believe me, they never do, he did not seem to be in a high level of pain. Jack learned early on how to manage his pain he hated the hospital. They asked me how I was so sure. I explained since the age of 6 Jack has been hospitalized more times than I can remember with pancreatitis. They pushed for more details. Like was the pain coming from his lower back. I responded by telling them I knew he had pancreatitis because he gets this look in his eyes. Surprisingly they believed me and hooked him up to an IV and started the morphine before the blood work which would confirm he pancreatitis came back. <br />
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The blood work came back, I was right. One of the few times I wish I were wrong. Jack got admitted and we settled in for a two week stay. This stay went pretty smoothly, two weeks and four books later Jack was discharged. For the first time ever, without a picc line. The picc line is a way to provide food to Jack. Jack's pancreatitis is unforgiving and in the past simply resting it a couple days without food or water would not work. He required a picc line. And would be sent home with it. Most countries will not discharge a patient with a picc line. They are highly suseptible to infection. The infection can be deadly. And in the past, Jack has had a picc line infection. Which I can not talk about. The memory is too painful.<br />
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Emotionally, Jack had a harder time coming back from this hospitalization. He did not snowboard for the rest of that season. The year after, he did not get on his snowboard. Jack loves snowboarding, this was heartbreaking. In the past, Jack really managed his emotional state well. As soon as he left the hospital, he was on a board, a skateboard or snowboard, any board. This time he struggled and for the first time, I was at a complete loss. I thought we had learned to handle this shitty disease. He better than the rest of us. The shitty disease that would without warning cause horrific pain. take him away from his friends, school and family, leave him without food and water for long periods of time. This time was just one time too many for Jack. I wondered if he would ever get back on that board. Head off to the terrain park and do all the things I would tell him not too, get way to much air, go over all the rails travel at breakneck speeds. I was banned from the terrain park for many reasons which I will not get into here. Except to say that apparently screaming, slow down or go on the smaller jump as he headed for the huge jump is frowned up in the snowboarding community. I am his mother. My job is to protect him. Even I could not protect him this time. I wondered if my fearless son would ever get on that board and head for the terrain park.<br />
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This morning, two years to the day of that epic snowfall and the last great day Jack spent on his board, Jack got out of bed, loaded up his gear. His dad got him a great helmet and jacket and goggles for Christmas. He got in his car and headed to Mountain Creek with his crew. Tears tumbled down my cheeks as I watched him leave. I never thought I would be so happy to see him leave.<br />
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#Cysticfibrosis #cf #cfforg #live #breathe #love #mybeautifulboy #strattonmountain #snowbard<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com2tag:blogger.com,1999:blog-5067854057947430161.post-73237461669279776952014-09-24T18:49:00.000-07:002014-09-24T18:49:06.495-07:00Hello Old Friend.<div dir="ltr" style="text-align: left;" trbidi="on">
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Well, it's been a while. While I would love to tell you, that I have not written because all is well and there nothing to tell, sadly, nothing could be further from the truth. There are some things I just can not write about. <br />
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So rather than write about our life, I will share my impression of the new show on TV. The Red Band Society. I hoped when I first read about this show, it would honestly highlight the truth behind life in a babies hospital. Not so. I have been watching now for almost an hour and nothing looks slightly familiar to life in a Children's Hospital. I would recognize it if it did. I have spent months in Children's Hospitals.<br />
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Rather than tell the truth, they sugar coat the lives of children with fatal and potentially fatal diseases. Why? It is okay for us to watch shows depicting life on the singles scene, as a housewife, as a sex addict. When comes to depicting life with a terminal or life threatening children's disease we need to make it look like time a frat party. This is an opportunity lost.<br />
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I think a show like this hurts more than it helps. Life in a children's hospital is hard. It is depressing. It is painful. You are a long way from home. You are not feeling good (if you were you would be home) It is not one big party as this show portrays it. I am only sad because a show like this could bring awareness and compassion to the fight that faces so many children.<br />
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When I started this blog I thought I could easily share everything facing our family. Some things are better left unsaid. Jack's fight has been so difficult from the start. But I have watched him fight, I have watched his sisters stand by his side and fight with him. And sometimes it makes cry that I have not given them the perfect life they deserve, I know in my heart they are going to be fine. They are going to win this fight. Jack will be fine.<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-66865074416278424502014-04-21T16:30:00.001-07:002014-04-21T16:39:06.968-07:00My Easter Miracle<div dir="ltr" style="text-align: left;" trbidi="on">
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Over the past fifteen years, I have found myself asking "Where is God?". This Easter, I got my answer. He is here and is listening.</div>
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Raised in a pretty traditional Catholic household, we rarely missed church, always visited the Rectory, carefully chose what to give up for lent and never ate meat on Fridays during Lent. My faith, some would say, has wavered, okay gone completely off the rails. Since Jack and Kate were diagnosed with Cystic Fibrosis, after spending months at a Baby's hospitals, I found myself asking "Where is God?" </div>
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This Easter weekend I was flipping channels and found myself stuck on the History Channel watching the Bible mini-series. I could not stop watching. Easter Sunday came, I went to church. </div>
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I rarely go to church anymore, but there I was on Easter Sunday, in church. No I was not wearing a pretty new dress or lovely hat, I was not with my family. I sat surrounded by families, in their Easter best. I felt at home, I always do in Church.</div>
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I ended up in the middle of the pew and thought to myself, if I were on the end I would feel the holy water when the Priest walked down the middle spreading it. Literally one second later I felt a huge splash of holy water, right on my forehead. It was as if someone was listening to me.</div>
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Finally, it was time for me to pray. This past year for Jack has been terrible. It started with being hospitalized for his pancreas, but soon it was his lungs. Everyone with someone with CF in their family will tell you, it's all about your lung function. For no reason, this past year Jack's lung function has been on downward spiral. To add insult to injury he started to culture for an infection that he would never get rid of. The last time Jack went to his pulmonary doctor, his numbers started with a 6, they were in the 60s! Ninety- eight is normal. I am not going to lie, this terrified me.</div>
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So there I sat in church, praying for Jack. Believing in God, believing in the resurrection and what Easter celebrates and praying for my son.</div>
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Today Jack had an appointment with his Lung Doctor. I had forgotten all about this appointment. His Dad took him, and when he walked back in, I braced myself for more bad news. After all, what had changed?</div>
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I asked how his appointment went, Jack smiled and his Dad smiled. His Dad looked at me and said, ask Jack what his numbers are. I did .. 95%! The doctor was shocked, Jack was shocked, they were high fiving.. this was unheard of. This was a miracle. My Easter miracle. Maybe God has been here all along but I just have not been paying attention.</div>
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I am so thankful for my Easter miracle. I am so thankful for my three beautiful children and I am thankful for those numbers because that is a miracle.</div>
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-91242677813153609622014-03-10T07:27:00.002-07:002014-03-10T07:27:34.796-07:00PAY IT FORWARD<div dir="ltr" style="text-align: left;" trbidi="on">
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It is hard to believe I have a house filled with teenagers now. It seems like yesterday I had a house full of babies. Our house was a happy house, filled with laughter. Jack's diagnosis came early on, seven months and with his diagnosis came fear. Pretty early on, I learned I was not alone on this journey. This train, my train, was filled with generous people. They were neighbors, mothers, athletes, businessmen and strangers. Their giving arms where much longer than their taking arms. What they have accomplished is nothing short of a miracle.<br />
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Before Jack's diagnosis, I was blissfully unaware that disease in our country was a multi million dollar business. I just assumed, if your child was sick, there were doctors and scientists working to cure it. I could not have been more wrong. If they have a way of getting rich, they would work to cure your child's disease. I suppose I feel fortunate that my child has a disease that there has been a lot of money raised and as such a great deal of progress is being made. Will that progress be in time for Jack, that I do not know. <br />
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So along with keeping Jack healthy until there was a cure was the added responsibility of raising money and awareness. This journey I started fifteen years ago, continues today. Cystic Fibrosis, as is the case with most children's diseases, gets very little corporate funding. Why? Our children do not grow up, they do not become the CEO of Pepsi where they can command millions of dollars in corporate funding to their favorite charity. Most donations to the Cystic Fibrosis Foundation are personal. My fundraising career started out with a cocktail party. I divided my friends into three teams and challenged them to raise money for the Great Strides Walk. The winning team received a case of wine. I hoped for $5,000 we raised close to $100,000. The checks rolled in from all over, some of the most unexpected came from families with no connection to mine. One check for $25 came from a an electrician and his family in the next town over. Someone with a giving arm longer then his taking arm. <br />
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Along this journey, I have met so many people who have donated money, time and anything else they could to make a difference in the life of a child with Cystic Fibrosis. And for that I am truly grateful. While a diagnosis like Cystic Fibrosis leaves you wondering why my child or any child for that matter. The journey you set off on will change you for ever.<br />
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Two men have changed this direction of Cystic Fibrosis, Frank DeFord and Boomer Esiason. Each has gone so much further with their commitment to this disease than one could ever expect. Frank DeFord lost his fight 30 years ago when his seven year old daughter died from Cystic Fibrosis after an exhausting fight. He not only continues to make appearances, he gives speeches from the heart. He shares his daughter Alex with everyone in that room. After Mr. DeFord speaks, there is never a dry eye. To relive his fight which ended tragically must be so difficult. <br />
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When Boomer son was diagnosed with Cystic Fibrosis he shared his second call was to his friend Frank DeFord. Mr. DeFord replied that there is a reason for this. Knowing that someone with Boomer's fame, kind heartedness and dedication would change the face and direction of Cystic Fibrosis. It has. For that I am grateful. But I wish medicine in America did not require someone famous to have a child with a disease to cure it. Not to take away what both Frank DeFord and Boomer Esiason have done for every child with Cystic Fibrosis. They have given them a fighting chance. They have given every mother of a child with Cystic Fibrosis hope.<br />
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While these gentleman have raised hundreds of millions, I would like to thank the electrician for his $25 check and his blessings. You have taught me that every little bit makes a difference, it makes in impact, it gives a mother faith and hope. Your generosity touched my heart. I am not in this fight alone, I have the love support, prayers and blessing of so many. I only hope that I can pay it forward in some small way to another family that is struggling with a child with a disease.<br />
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There is little hope for changing how disease are funded in America. But now I have hope in the human spirit. I think most, when called upon, will step up and do what they can. I always say that I wish Jack did not have Cystic Fibrosis, after this year, I wish this more than ever. It has been a horrible year. But I am grateful for the journey, along the way have met so many whose kindness, generosity, dedication and spirit have given me faith, faith in my son, faith in my community, faith in Jack's future and every other child with CF. Thank you for that. #cysticfibrosis #rockCF #children #love #Faith #Boomeresiason</div>
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-65822157957494565412014-01-21T15:08:00.005-08:002014-01-21T15:24:54.374-08:00REAL SPORTS WITH BRYANT GUMBEL<div dir="ltr" style="text-align: left;" trbidi="on">
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Tonight at 10, on Real Sports with Bryant Gumbel, Boomer Esiason and Frank DeFord sit down for a talk. The talk is about their connection and Cystic Fibrosis.<br />
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I remember so well when Jack was diagnosed with Cystic Fibrosis. <br />
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Let me go back, Jack was just sick, he was always sick. His doctor insisted I was over reacting, my son simply had an older sibling at home. Interestingly, she was never sick. One day I brought him home from his doctor, who again assured me I was over reacting. My british friend Nikki, no medical training, took one look at him and said "that child belongs in hospital". I took Jack to a new doctor that afternoon, she saved Jack's life. She sent me straight to Columbia. Jack had a double ear infection, one had perferated, conjunctivitis and a collapsed lung. Dr. Quittell took care of my son that day. She told me "Liz I would like you to bring Jack back to test for Cystic Fibrosis. I do not think your son has this so do not google". Being the good catholic girl I am I listened. So three weeks later, when I was sitting in her office after Jack failed the test, tears streamed down my face when Dr. Quittell said "things are so much better now, some children with CF actually live to 18 and go to college". I had no idea this disease was terminal. That day had found out I was pregnant again.<br />
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After that, I went straight home, and I googled. I am across a book about a girl who had CF. I ordered it. I sat down to read Alex the Life of a Child and did not get up till I was finished. The book was written by Frank DeFord. I later found out he was a famous sports writer. His book is so beautifully written, I cried through it. Without holding anything back, Frank DeFord told the story of his princess Alex who died when she was 8. I guess what I liked best about the book was the Mr. DeFord was so mad about this disease. I knew exactly how he felt.<br />
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I met Boomer Esiason at Columbia. His son was being treated by Dr. Quittell, Jack's doctor. He was lovely. Not long after that, I heard Boomer speak for the first time. He and his wife Cheryl were living in Cincinnati. He was the QB with the Bengals. After reading Frank DeFord's book they decided to raise money for Cystic Fibrosis. And with tears in his eyes, he described the call from his wife four years later. He was in NY, just signed with the Jets, he had to come home Gunner was sick. Gunner had Cystic Fibrosis.<br />
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I admire both of these men for many reasons but mostly one. They stood up. They have raised money and awareness for Cystic Fibrosis and in doing so have changed the outcome for children with this terminal disease. They are on the brink of something so exciting. It will change the lives of children and their families with Cystic Fibrosis. Going forward, this will be the blueprint for other children's disease.<br />
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Mr. DeFord lost his fight in 1980, yet he has continued to make appearances and speak on behalf of CF Foundation. I was fortunate enough to be a Cipriani's in NYC to hear him speak. He told a story about his beautiful daughter Alex. She was small, most children with the disease are small in stature, she was lovely, beautiful, smart, funny and sensitive. Mr. DeFord talked about one night in particular when he was having a conversation with Alex about princesses, Alex's favorite topic. Alex told her father "I could never be a princess". Her father asked "why Alex, why can't you be a princess". Alex replied, my crown would fall off when you did PT in the downward positions on me." PT is something every child with CF has done everyday sometimes three times a day. You hold them in many positions and pound on them to get the mucus out of their lungs. Some of the positions are in the downward position. which of course if you were wearing a crown, it would fall off. Everyone in that room had tears in their eyes. <br />
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A lot of money was raised that night. Mr. DeFord could easily have walked away when his fight was over in 1980. He did not. He stood up. <br />
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Boomer Esiason, professional athlete stood up. His foundation has done so much for children with Cystic Fibrosis. He has tirelessly put his family on the forefront of this fight. He has accomplished more than he will ever realize in changing the hopes and dreams of children with Cystic Fibrosis. He is a hero, he stood up.<br />
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Children's diseases in America are grossly over looked by corporations and the government when it comes to funding. If there is no money, there is no progress. I followed the blog of mother. Her child had a rare form of cancer. There was a drug that would have helped her son, but no drug company would produce it, the drug company could not enough money. Her son died.<br />
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So if you have the opportunity to stand up, to make a difference in the life of a child or a family with a child with a disability like CF or Autism, or Cancer, stand up. Make a difference. Then go home, hug your children.<br />
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Tonight I will be watching Real Sports with Bryant Gumbel. I admire these two men. I admire them for their compassion, the drive and determination, but mostly I admire them because they stood up. These men will touch your hearts. </div>
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-16691569467862003262013-12-10T16:50:00.000-08:002013-12-10T17:01:40.575-08:00Time<div dir="ltr" style="text-align: left;" trbidi="on">
"All of my possessions for a moment in time." Queen Elizabeth I<br />
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Sometimes I wish I could go back, go back in time, just for a day. When they were little, life just seemed so carefree. Yes Jack and Kate have Cystic Fibrosis, but to look them, you would never know it. When they were young, before Jack got really sick, we lived life, everyday like it was our last day. Whatever they wanted or needed I gave them. Christmas was heaven, parties with friends, Vermont, a dream.<br />
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Early on we took up going to Vermont the day after Christmas. We had house with a huge fireplace and no TV or Internet of phone service. Our days were spent skiing, our nights in front of the fire playing all kinds of ridiculous games. I would trade anything to go back. Just for one night. All three in their jams, exhausted after a day of skiing or snowboarding, in front of the fire.<br />
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Later, it seemed it was always around the holidays that our lives would be shattered when Jack, in the middle of the night, would get sick. With little or no warning, we were on our to the hospital never knowing how long that stay would last. How many nights would I sleep on chair, how many days away from my girls. And Jack, how much pain before he just could not take it anymore, before his body said, enough is enough.<br />
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Last year I was really unsettled in December. I just felt something was wrong, terrified something was going to happen, terrified Jack would get sick. We made it through the holidays and there was a sigh of relief as we all spent the first day after Christmas in 22 inches of snow at Stratton. But that night, in the middle of the night, Jack got sick.<br />
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His sisters, well I never give them the credit the deserve, they take care of Jack, they get him packed for the hospital, they tell me to pull myself together. They have lived this, with Jack getting sick, really sick, for their entire lives. I never quite get used to it. I still stand in the emergency room, with tears pouring down my face saying, "my son has pancreatitis and you need to get a line in him, NOW."<br />
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And then I stay with Jack, some think I just wait... wait for them to fix him and send us home. No, I explain his history, I demand his medication be given in a timely manor, I thoroughly go over his history and play an active role in every decision that is made and make sure costly mistakes are not made. I sleep on a chair. I rarely eat, Jack can not it just does not seem right. Kate, my saint comes to visit and stay with Jack and Sam makes sure our family stays "Normal". Which is all she ever wanted.<br />
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So it is that time of year. My wish is to go back. Just for one moment. Back when I was not afraid. Back when we were a normal family. Just one day.<br />
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I live in fear of the holidays and this year is no exception...<br />
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But this year is different. I know that whatever happens me and my girls will be able to take care of Jack. We love him with all our heart. He is our Christmas miracle.<br />
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Merry Christmas to all.....<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-1088519261788543382013-11-21T07:47:00.001-08:002013-11-23T08:22:29.071-08:00FAITH<div dir="ltr" style="text-align: left;" trbidi="on">
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<b>"Sometimes Life is going to hit you in the head with a brick. Don't lose faith." Steve Jobs</b><br />
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Often I have been given way too much credit when it comes to taking care of Jack. One thing is for sure, Jack has always been the one to keep the faith. Know matter what, Jack has faith that everything is going to be all right.<br />
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A little about Jack, as soon as he could walk he ran. From the start Jack liked going fast. He would jump on his bike and peel off toward town, which was fine expect he was four! I told him no biking to town alone so the next day he took the keys and started the car. He was going to drive to town.<br />
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His first day on skis, I went to find Winslow his instructor (a very cute aussie) and get Jack. At the magic carpet they told me Jack was on the chairlift. Really, I said this is his FIRST day on skis. The calmly told me he wanted to go. Of course he did, he would have gone on the Gondola and to double black if ya let him. I told them, you have to say "No Jack" <br />
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But honestly there was no stopping Jack. If he was not peeling through the terrain park on his snowboard, he was flying through through the skatepark on his skateboard. He liked speed, and he was fearless. <br />
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Once his father thought he would teach him a lesson and went off while snowboarding with Jack, thinking Jack would get scared and follow.. nope. That day I was skiing with a friend and on the board at the chairlift there was a note. Mrs Clark please come to the front desk. I thought excellent, they found my car keys. Wrong. When I got to the front desk, the lost and found, my six year old son was sitting on it His father came in right after me. Deer in the headlights, he claimed they got separated. I told him, you get separated from your 40 year old friend, you lose your six year old child. But there was no stopping Jack.<br />
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At 6 Jack went to the hospital for what we thought would be two days, stupidly I told Jack he did not have to wash his hair till we got home, he left two months later with dreadlocks. That hospitalization changed everything. Jack was diagnosed with Pancreatitis, it was unrelenting. His doctor was clueless when it came to handling it. She thought a little rest and an IV. She could not have been more wrong. Weeks later, a dozen blown IVs, hours of pain and frustration, a massive weight loss Jack was not closer to getting better. He was getting worse. I called my friend from Rye, we lived around the corner and our kids were great friends. Her brother in law was and is Head of Surgery at Columbia Pres. He saved Jack's life. He sent Dr. Stevens from the adult side.<br />
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Dr. Stevens did an ERCP. They put Jack under and took a look. I sat in that waiting room, confident he would come out and say, I have fixed your son. Nope. He came out and said "I have never seen this in a child. I do not know what to tell you Mrs. Clark." Tears streamed down my face and I went to Jack. He was crying and in so much pain. It was devastating. This disease is devastating.<br />
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Later that week, they decided to put a provac port in. This would feed Jack, administer medication and require a lot of work. Putting Jack under again was heartbreaking, he was so scared. I was with him in the OR, I leaned down and quietly told him "Jack this is a magic port, with this port we get to go home Jack. This is a great day". <br />
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He come home two days before christmas. His sisters who adore him were waiting at the door. They prepared a special dance for jack and hugged him till he could not take anymore. Our friends decorated our house that year. Our house never looked more beautiful. It was decorated with love and compassion. We are blessed with wonderful friends. Jack's faith kicked in and he was snowboarding five days after. Port wrapped, Jack took off. Jack had enough faith for both of us. He would say mom, I am good, I am okay. <br />
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I have lost count of how many times Jack has been hospitalized since. After each hospital stay, usually picc line in his arm, as soon as he could, he would head off to the skatepark or terrain park. His faith was remarkable. Mine not so much. I would breakdown, cry, drink wine, cry more, post on facebook, call anyone who would take my call. Which most of my friends did. My friends were wonderful. They drove my girls when I could not, they made meals when I could not. They listened while cried. They helped me, I needed them because I did not have faith. I was terrified.<br />
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This year Jack lost his faith. Jack, Sam and I were up at Stratton last Christmas. He was boarding in 22 inches of snow. He stayed on his board till the lifts closed. My legs were burning by 2. That night his pancreas took over and we went back to westchester and back to the hospital. This time was different. That smile was gone. He just was not coming back. He was not okay.<br />
<br />
I have to stay I am not all surprised. I often thought, that everything this child has been through, the pain, the hospital stays, no food all of it had to be going somewhere. I have often said his courage and faith were remarkable and it is. This time there was no faith left. I felt him slipping away, months went by. I had no idea what to do. Finally, I found help. I realized it was my turn to be strong, to have faith.<br />
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I have enough faith for both of us now. I have to say its been months, but that smile is returning to Jack's face. Jack, his sisters and I are going back to Stratton at Christmas and he can tear through the terrain parks and go to their indoor skate park at night. We can but this horrible year behind us. Because Jack, I have enough faith for both of us. I know how strong and courageous you are because I have been with you every minute. But know now you have me and your sisters who love you. It is our turn to take care of you. We have faith Jack, everything is going to be all right.<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com2tag:blogger.com,1999:blog-5067854057947430161.post-73809773402131730542013-10-14T19:06:00.001-07:002013-10-14T19:08:06.493-07:00Blood Brother<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
I was listening to this song tonight. Blood Brothers. Bruce Springsteen. The lyrics "What once seemed black and white have turned so many shades of grey."<br />
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This blog started as a diary to chart Jack's hospital stays. I felt that it was so important to get jack the best medical care possible to fight his Cystic Fibrosis. So much so, we spent days in the ER at Columbia, because it was the only way to get admitted and to get the best minds in medicine to treat Jack.<br />
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I so stupidly forgot that there was so much more to this than just fixing Jack's body. What about making sure that my beautiful, fearless, wild child stayed wild. What about making sure that boy who flew down down every hill on his snowboard, flew recklessly through every skate park, who explored fearlessly through life continued to do so.<br />
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I have let him down. While I was so busy making sure that medically he was getting the best care possible, I overlooked that at some point he was going to come to terms with all of this emotionally.<br />
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After all, he has spent weeks, sometimes months, in the hospital from the time he was a baby. He has endured pain that most never feel. His life has been abruptly interrupted because of his Cystic Fibrosis.<br />
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How thoughtless of me, his mother, to not recognize that at some point this would catch up with him. <br />
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I hate Cystic Fibrosis. I hate this disease and what it has taken from him. He has more courage and strength than anyone I know. But now this is catching up with him.<br />
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We live in world where are children are expected to be not just be athletes, but olympic quality. They better get a perfect score on their SATs and graduate with enough ap credits to graduate from college before they start.<br />
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My big girl is at Bucknell. She is smart, beautiful an athlete and committed. It is not easy being part of this family, as some of our holidays are spent in hospitals or trips cut short and ending up in the hospital, yet she loves her brother and has made it to Bucknell. My baby girl loves her brother too. She has always been by his side. She is a freshman, great grades, in the HS play she is amazing. How does this effect her?<br />
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I hate this disease. I do. But I will say, my children have risen above this and because of this will be stronger, more empathetic and more equipped to handle whatever comes their way.<br />
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And fear not Jack, you are surrounded by girls who love you. Our love and faith in you is endless and we will get you to a better place.<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-16328090580122894352013-08-02T08:27:00.004-07:002013-08-02T08:47:43.432-07:00It's called parenting Liz ...<div dir="ltr" style="text-align: left;" trbidi="on">
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<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Its called parenting Liz....</span></b><br />
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></b>
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">That's what Jack's dad said to me the other day when he came over and Jack was asleep at 5 in the afternoon. He was angry that I was letting that happen.</span></b><br />
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></b>
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Jack has been living the life or riley (I was never quite sure what that meant) this summer. He plays xBox late with his friends. He eats at all hours, he has grown 4 inches and six months and no sign of stopping, and he naps when feels like it. He has no schedule. </span></b><br />
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></b>
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Jack's first week hospital stay was at nine months. I have lost count of how many time he has been admitted since. His longest stay was two months. I do not know how many pic lines he has left the hospital with. The care of which is awful. He probably never should have been allowed to go home with the Picc Line. He has had one picc line infection, that lead to blood infection, he was septic and I thought for sure I was gonna lose my son that first night. He does therapy everyday, he has been on crazy no fat diet. This is the life of child with Cystic Fibrosis. Some go a longtime without these complications, Jack has not been so lucky. Through all of this his he has shown the strength and courage that I am in awe of. He never feels sorry for himself or asks why me. He, along with his two sisters, is my hero.</span></b><br />
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></b>
<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Yelling at Jack for napping is not an option for me. He was hospitalized this winter again for pancreatitis, and to add insult to injury, we received some bad news about his lungs the following month. So if this is how Jack handles his CF, taking a month off in the summer to play xBox, to rest, to eat and grow so be it.</span></b><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><br /></b></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b>There is no manual for this. What to expect never covered what to do if your child is chronically sick. I consider Jack one of the most capable people I know. This will play a very important role in his life going forward. I hope and pray everyday I will be fortunate enough to see what Jack accomplishes as an adult. I love him with all my heart, and yes if at 15 he wants the summer off... yes Jack you get the summer off.</b></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><br /></b></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b>My youngest Kate is away at camp. She is the most creative child I have ever met. She reads anything she can get her hands on, knits, sews, sings, performs. I miss her with all my heart.</b></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><br /></b></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b>In two weeks, my big girl Sam who I could not be more proud of, leaves for Bucknell. I told a close friend the other night whose daughters are young, if I could do this all over again, I would.</b></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><br /></b></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b>Missing my baby who is at camp for the month and dropping my Sam off at Bucknell is tearing me apart. So yes, my Jack who is here with me, who has been fighting for his life since he was a baby can have the summer off. To his Dad I say yes this is parenting.</b></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><br /></b></span>
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com2tag:blogger.com,1999:blog-5067854057947430161.post-28745537723741902382013-05-29T06:26:00.002-07:002013-05-29T06:30:11.538-07:00Living Life to the Fullest<div dir="ltr" style="text-align: left;" trbidi="on">
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This is Jack, and this is our story. This year has been awful. It started in Vermont, our family trip cut short after the first day. Jack's pancreas in full distress. With Jack's Cystic Fibrosis we can be caught so off guard. There is warning, no signs, no symptoms. I kiss him goodnight, and in the middle of the night, he is in agony and we are headed to the ER. In the case, I had a four hour trip. Without my oldest daughter Sam, I am not sure I would have made it. She packed the car, refused to stay with friends insisting on coming home with me and Jack. And when I started crying at the gas station talking to the attendant, Sam told me "Get yourself together". I am so blessed to have three beautiful, strong and spirited children.<br />
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I always know when Jack has pancreatitis. The nurses in the ER always question me, they think I am wrong. They always ask "how do you know". He gets a look. I know that look so well. He tries to hide it because he knows it means he is headed to the hospital for anywhere from two weeks to two months. No food or water and excruciating pain until he gets his meds. They give my son morphine. He has been given morphine since he was six. Mothers worry about giving their child asprin. My son is on morphine. But I know that look.<br />
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This winter, once his pancreas settled down and I though I was in the clear, more bad news. Jack had a staph infection in his lungs. One he will never get rid of. I have feared this since I first read about having a child with Cystic Fibrosis. This is your battle, keeping his lungs clear. When he was a baby. I thought I just will never let him leave the house. I will keep him safe. I will protect him. Of course early on Jack showed me that was not going to be how he lived life. He took off as soon as he was mobile. And he has lived life to the fullest since.<br />
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He took the car keys when he was four and by the time I made it outside Jack had the motor running his sister, who idolized him, was riding shotgun and he was playing with the pedals. When I asked where they were headed. He said "town". I said "I do not think this a good idea". Jack said " I do" and Kate agreed. I was outnumbered. <br />
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There are great drugs now to help clear Jack's lungs and there have been great advances this year. There is a drug now that stops the disease, Kalydeco. My hope is it will be available in time to stop Jack's disease. My prayer is that every child with this disease will be able to get this drug.<br />
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Twitter this weekend was a buzz with all kinds of news, it is my way to stay connected to the world. Along with all the news from Hollywood and Washington, I read about a movie, a short film that Matthew Modine's son Boman is trying to get funded. It is about a girl about Cystic Fibrosis trying to live life to the fullest.<br />
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Not much has been written about Cystic Fibrosis. A film that will highlight the fight and the will and the strength of a child with the disease was great news to me. The film is based on the youtube diary of girl named Eva. Eva documented her fight with Cystic Fibrosis. <br />
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The film is important, because yes there have been great advances but children lose their fight everyday. I think that most young adults and children I have met with Cystic Fibrosis do live life to its fullest.<br />
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I have always said, I wish with all my heart my children did not have Cystic Fibrosis, but they do. As a result I am a very different parent. I live in the moment and try to appreciate what each day brings. I try to stay positive and not sweat the small stuff. Years like this are challenging because I am so clearly reminded. But Jack always seems to have a handle on this. He says "I am okay mom". And he is.<br />
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Please take a look at the following link. The movie is titled Hyperion and everyone will benefit from seeing this film. I hope it gets made.<br />
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<a href="http://www.kickstarter.com/projects/447490465/hyperion-0">http://www.kickstarter.com/projects/447490465/hyperion-0</a><br />
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Thank you to the Modine's for making this film... For showing her fight, her strength, her living life to the fullest.</div>
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com3tag:blogger.com,1999:blog-5067854057947430161.post-36948784066086778132013-05-20T06:27:00.000-07:002013-05-20T06:56:14.484-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
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Our fight just got a little harder in the past five months. Its hard for me to write about that. Its hard for me to share that. I have always been pretty good about living in the moment, not always thinking about Jack's Cystic Fibrosis. But recently we got news that makes that so much harder.<br />
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As I write this, Jack is in bed with his pulmazine flowing out of his neb into his lungs. We do this twice a day along with his vest. This is an effort to clear his lungs, they are no longer clear. <br />
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My oldest Samantha is graduating in two weeks and off to Bucknell. When Jack was first diagnosed I was told by my doctor "Liz so many children with Cystic Fibrosis are reaching college age and even going." Saying good bye to Sam this fall is going to be one of the hardest things I have done. And she is just going four hours away. She is just going to College.<br />
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Honestly, I have always been able to share our fight. I just can not do that right now. Our fight is too hard for me to talk about. <br />
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May is Cystic Fibrosis awareness Month. Below is a youtube from one of the more incredible people I have had the pleasure of meeting along this Journey. She has Cystic Fibrosis. So rather than talk about my journey, please follow watch her story. She will inspire you. She has inspired me.<br />
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<a href="https://www.youtube.com/watch?v=v6zfSaG6-9A&feature=youtu.be">https://www.youtube.com/watch?v=v6zfSaG6-9A&feature=youtu.be</a><br />
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This is our story: <a href="https://www.youtube.com/watch?v=xD9Dj4RB1dQ"> https://www.youtube.com/watch?v=xD9Dj4RB1dQ</a><br />
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Thank you for your continued support, love, emails, texts, thoughts, and prayers...<br />
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best....<br />
<br /></div>
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-14535243300989339422013-04-10T17:51:00.000-07:002013-04-10T17:51:45.275-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
Tonight I signed on to my blog to turn it off. <br />
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There was a pending comment. Thanking me for sharing our story. Finishing by saying live life like Jack.<br />
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We should all live life like Jack. We should be less concerned with what others think, say, and value. We should spend our time doing the things we love. Surround ourselves by those we care about.<br />
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I have often feared this day, the day Jack and Kate we come to realize just what it means to have Cystic Fibrosis. So this is my letter to them.<br />
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My darling babies,<br />
<br />
From the day I was told you had cystic fibrosis I vowed to fight. I also made up my mind that you would be Jack and Kate who have Cystic Fibrosis. Not those kids who have Cystic Fibrosis Jack and Kate. You were not going to be the Poster Children for this disease and I was not going to let it define you.<br />
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I was going to protect you and teach you to handle your CF, but truth be told you have taught me that you are so much stronger than this disease. You have shown me how to live life and enjoy what we have every day. You have guided me through this. Jack, Kate and Sam this was not the life I envisioned, it is so much better. Your love for one another, your support for one is more than any mother could hope for or dream of.<br />
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I want you now to know, you are strong, resilient, and empathetic. You Jack have spent time in hospital than most do in life time, and you kate have been by his side. I am the one who is blessed to have you. <br />
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Know this my beautiful babies, it is a different world for children with cystic fibrosis. I will fight for you every day. Do not worry about your future. I am not worried. I am in awe of our strength and courage. <br />
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I love you with all of my heart, you have given my live meaning.<br />
<br />
Mom mom<br />
<br /></div>
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-81500101714970134812013-02-04T13:47:00.000-08:002013-02-04T13:47:46.978-08:00<div dir="ltr" style="text-align: left;" trbidi="on">
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b>Anything Can Happen. </b> Its better now. Jack has been home for one month. The girls have gone on with their lives. Jack has gone with his life. They are good that, they live life and they live it well. Finally, I am going on with mine. I remember when Jack was diagnosed. When, five months pregnant, I was told Jack had Cystic Fibrosis. It hurt to breathe. I used to hold him at night and rock him to sleep and whisper in his ear, "don't leave me Jack, stay with mommy." </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">One month later, I found out the baby girl I was carrying had Cystic Fibrosis too. Not knowing what the future held terrified me. I wanted to see, I wanted just a snapshot. I wanted to know. I read everything I could on the internet, drove our doctor mad with phone calls. Finally, Dr. Quittell told me to stop calling, she would call me. So I waited, I waited for her call. I waited for her to tell me everything was going to be ok. And finally settled into life with three children under three. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Throughout this journey, I have held it together. We ski, some years logging 40 days on our skis, travel to warm destinations, California to Atlantis. Kate and I have seen everything on broadway , all our favorite museums and many exhibits. She is my city girl. Sam and I traveled the east coast, Sam is a talented a competitive swimmer. I have tried to attend Jack's skateboarding competitions. I am currently banned from the skatepark. Apparently, it's frowned upon to run into the skate park, yelling honey are you ok? when your son falls off his board. I have cooked, thrown birthday parties, chased them, bathed them, hugged them and loved them. I have lived life as if everything was okay.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I do this successfully when Jack is not in the hospital. When he is, it all comes back. The fear, the loneliness, desperation, the panic. The nights where I sleep on the chair next to his bed and whisper into his ear, "do not leave me Jack, stay with mommy, don't go". When he was little I worried he would be scared and he would need with me. Now I worry about me, I do not know how to live my life without him.</span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sam and Kate are Jack's sisters. They love their brother, the protect him and look out for him. Some wonder why I never mention Kate in my blog. Kate has my heart. She is sweet and smart and sensitive. Kate has never been sick. Not one day. Never. She is Jack's foundation. When he was little she came to the hospital and watched endless movies with Jack. Mostly Pirates of the Carribbean. She played video games with him. She stayed over. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I am not sure what the future will hold. I know this past stay was the best yet. Maybe Jack is handling his pancreatitis better, maybe this is our future. Maybe everything will be ok.</span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sam is leaving for Bucknell in the fall. Life without her, well I am going to miss her with all my heart. She is blessing, smart, athletic, beautiful. I have needed her, I have needed her to help me keep this family together. I know I have to let her go now. I am not ready to do that.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">While this hospitalization was the shortest, for me emotionally it was the hardest. I do not know why. Maybe because my father died a few months earlier. Maybe because I know Sam is leaving. Maybe because it was the holidays. Babies hospitals are notoriously lonely, but they particularly lonely during the holidays. </span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">With a little help from my friends, I am back. A little slimmer, a little wiser, a little more confident about Jack's future. Taking a page from Jack, I am living life and living it well. The past week has been the best I have had in months. So thank you, for the cards, the dinners, the calls, the posts, the flowers, the book recommendations, the CD (loved that), the hugs, kisses and love. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I am still waiting for my call from Dr. Quittell. I know in my heart. Anything can happen.</span><br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com2tag:blogger.com,1999:blog-5067854057947430161.post-66445769213940693322013-01-16T17:20:00.000-08:002013-01-17T05:04:14.888-08:00I Will Never Get Used to This<div dir="ltr" style="text-align: left;" trbidi="on">
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I started my blog two years ago when Jack entered Columbia Pres. with Pancreatitis for the sixth or seventh time. I've actually lost count. Two years later, this January, Jack was admitted to Westchester Medical with Pancreatitis. In the beginning, I started the blog to keep a medical record of Jack's hospitalizations. It has become much more than that. Where do I begin this time?<br />
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Following Christmas, we packed the tule and headed to Stratton with a forecast of snow. The snow fell, by morning there was 8 fresh inches and it continued all day. Jack and his friend headed to the woods, he was on the chairlift by 8:30. Sam and I headed to the Sunbowl, I spent the day chasing Sam. Everything was bumped up, while she effortlessly flew the bumps, I struggled. Note to self: I dropped her off at ski school at four because I wanted her to be able ski with me, I did not want her to be able to smoke me.<br />
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We all met up at lunch, Jack could not wait to get back. Sam and I lasted till two, when I just could not feel my legs. At one point, I considered running into a tree, then they would be forced to bring me down in a basket which seemed easier than skiing down at this point.<br />
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In the end 22 inches of snow had fallen. We were so excited for the rest of the week. A vacation that Jack had looked forward to for months. His favorite of the year. Six am, Jack came into my room with a look. There was no need for him to say a word. I knew. I knew he had pancreatitis and I had to get him home.<br />
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Pancreatitis' main characteristic is extreme pain. I wondered how I was going to get him off this mountain. Its a four hour drive. Sam, my beautiful girl jumped up and started packing the car. I offered to drop her with friends, let her stay. She said no I am coming with Jack. I gave Jack a Tylenol PM It was all I could think of. <br />
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We made it home, made it to the hospital and started process of getting him admitted. The ER doctor asked what was wrong with Jack? I said he had Pancreatitis. She doubted me, they always do, asked how I new for sure, was the pain coming from his back? I said he gets a look in his face. We need to get a line in him and get medication before his next attack. Thankfully she listened and all of that happened before the lab results came back showing that he had a full blown acute attack of Pancreatitis<br />
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Our longest stay in the hospital was 9 weeks and six months with a Picc Line. Jack was fed through a Line that bypassed his pancreas. I took care of that line. His shortest stay before this was three weeks, with Picc Line. He never left without a Picc Line. I was never afraid of the Picc till two years ago, when his Picc line infection made him sicker than I had ever seen him. Now I was terrified of this line. <br />
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You would think, by now, I would effortlessly get through these hospital stays. I am often told how strong I am and capable. Well no, that is not the case and thats not what happened. I handled the days in the hospital well. I know exactly what needs to happen to get Jack home and I spend my days there making sure it happens with the least amount of screw ups possible. I fall apart when I go home.<br />
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At the hospital, the nurses are my front line and always excellent. The doctors I chose ahead of time, so clearly trust them and believe in them. The residents, are like three years, reckless and a pain in the ass. I need the nurses and I need the Doctors i do not need the residents. So when the resident screws up, which they always do, I throw them out. They always complain which makes me laugh, after all I make it clear, I am not there to make any new friends, I am there to get him home.<br />
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My favorite resident story was when jack was a year old and was in the hospital for a two week stay. Getting a line going in Jack proved very difficult and I quickly learned nurses were far better than residents at getting a vein. The residents blew away all the good veins making it harder for the nurses. I became very protective of Jack's veins, so when the resident came saying she needed to draw blood, I told her I need someone more senior to do that. She said "Mrs. Clark I am the most senior person on the floor so maybe you need to leave the room while I do this." To which I said "One of us is going to be leaving but its not me. I have bras older than you, you march out there and get one of those qualified nurses to do this if you want the blood.<br />
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Anyone who has spent anytime in a Children's Hospital will tell you its the loneliest place in the world and over the holidays its ten times worse. I do not think I will get used to it. I do not think will ever adjust, I do not think I will be ever handle it as well as I would like. I get lonely. I get scared.<br />
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My girls handle it. Jack handles it. Before I took Jack to the emergency room, Sam hugged him, and Kate packed his bag. Kate has spent years by Jacks side in the hospital. Kate is one year younger than Jack. They were inseparable when they were younger. Jack was Kate's world, whatever he wanted to do she was right along side. Often Jack did not have the best ideas, like the time he took the keys to the minivan, jumped in, started it and was pushing the peddle by the time I realized they were gone. And there was Kate, sitting shot gun. I told the two them, I did not think this was a very good idea, Jack did not agree and Kate agreed with Jack.<br />
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The hardest part is the beginning, before they get his pain under control. Seeing him in that much pain breaks my heart. His father will say "try giving him the least amount of morphine possible". Fortunately the nurses and I agree, give him what it takes. <br />
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This time, Jack did really well, his numbers went down and all the doctors seemed confident he would leave without a Picc Line. The line he had left with every other stay. The Picc Line I live in fear of now. Last time he did really well too, we came to this point and he was being discharged. But then it was like the movie the perfect storm, when they see the sky clearing and they think they have made it only to have to storm engulf them again. Last time Jack did not go home, he stayed for weeks and got a Picc Line.<br />
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I was home the night before the Jack got discharged, sure that the numbers would up in the morning and he would staying. So convinced that I cried myself to sleep that night. <br />
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Thankfully, I was wrong, Jack come home and one week later I am happy to say he is good. I am not. It always takes me a little longer. The first few days, I cried on the phone to who ever would listen, I feared we would end up right back in the emergency room. I grabbed on, I held a little too tight. I fell apart. I lost it. I was so far from that strong girl who handles this so well. I am ok now. I always am.<br />
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A footnote: I am blessed to have wonderful people in my life who shower me with love. I appreciate every post, tweet, like, book suggestion, phone call, special CD and more ... I am here to say it makes a difference. I am forever grateful.<br />
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elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-75204411996526057702012-12-16T18:51:00.002-08:002012-12-16T19:05:05.068-08:00Dear John<div dir="ltr" style="text-align: left;" trbidi="on">
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To: John Byrne, Jack's nurse, my guardian angel.<br />
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Dear John,<br />
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I am writing tonight to thank you. Thank you for helping Jack and saving me. I was watching the ceremony for the children in Connecticut. Brought me back to when Jack was six, and it was the holidays and he got sick. The first time he was really sick.<br />
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Do you remember the first time you met me John? I do. It was December 23. Jack had finally been released from Columbia Presbyterian Babies Hospital. On November 2 of that year we brought Jack to the emergency room, he was in so much pain, we had no idea what was wrong with him. He has Cystic Fibrosis and I guess I always thought it would lung issues that would bring us to the emergency room. This time it was Jack's pancreas.<br />
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If I knew than what I know now, I would never have survived those first days. I was so naive. I thought we will be there for a couple days, they will fix Jack and we will go home. I was so confident of this, I told Jack he did not have to wash his hair till we went home. Jack had dreadlocks by the time we left Columbia Presbyterian Babies Hosptial.<br />
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Eight weeks, two surgeries, a thousand blown IVs and one provac port later we were finally going home. It was not that Jack was better. He was not. I think now I know that insurance companies do not want to pay the hospital bill. So home we went with the promise that I would have nurses living with us, to care for Jack, around the clock.<br />
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They could not find any nurses so they sent you, John Byrne (my guardian angel) to teach me to care for Jack. Remember coming into our kitchen, John? We had this huge island and you spread out enough medical supplies to keep a third world country going for months. Than you looked over at me and said "this is what you need to learn how to do."<br />
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Tears streaming down my face I turned to you and whispered "I cannot do this, I will hurt him." You smiled, held my hand and said you are gonna be fine. Everything is going to be okay.<br />
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You came everyday, until I got the hang of things. You gave me your number and said call anytime of the day or night. And I did. You always answered. Remember the time I unhooked the wrong thing, I was sure he was gonna keel over, I called, you answered, I think it was 3 am. We fixed it and went back to bed.<br />
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I want to thank you John. Thank you for being Jack's nurse and for teaching me to care for him. The last time I saw you, was right before Christmas two years ago. (I have a love hate relationship with the holidays.) Jack was hospitalized three weeks this time. Seeing you when I answered the door, well I do not think you will ever know how much you mean to me and Jack. We have grown to love and rely on your caring and compassionate manor. I have so enjoyed your Irish sense of humor. My favorite was the time I was going on and on about a mistake a doctor had made and you turned to me and said "Liz why do you think they call it practicing medicine."<br />
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I miss you John, you will always have a special place in my heart. With your help, we are winning our fight with Cystic Fibrosis, me and Jack.<br />
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I am sorry for the families in Connecticut who were not even given the chance to fight for their children. I am thankful my fight is not over, and that I still have my son. I do not know that I could find a place for me without him.<br />
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Thank you John. <br />
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With love,<br />
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Liz</div>
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-17798653655443939422012-09-15T18:40:00.001-07:002012-09-15T19:24:52.130-07:00Members of a Club <div class="separator" style="clear: both; text-align: center;">
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Tonight I met Lee Woodward. The evening, in honor of her new book. Evenings like tonight give me hope. It is so inspiring to meet a mother and wife who is a member of the club that no one wants to be member of, yet she prevails and makes sure others benefit.
Her husband suffered a dramatic brain injury. With love and support, her family is in tact and she is making sure other families faced with the same injury have the support they need.
Once Jack was diagnosed with Cystic Fibrosis, I hit the internet, the same internet his doctor had warned me about. Most of what I found did nothing to help me. I was looking for a cure, a reason, an explanation. I was told "the lord only gives what you can handle". Clearly, that was a huge mistake. As my father, my mother and brother will tell you, I was the week link in our family chain.
Then I was told, if the outcome was not in your favor, then they (your baby) was in a better place. What is a better place for a child than with their mother.
Finally I read Alex, Life of Child by Frank Deford. His anger resinated with me. And it helped, it helped me to know that like me, he was so mad at this disease.
Some think we have great health care in America, and yes if you are healthy we do. Healthcare is business. If someone can make money off of your child's disease, you are in luck, the odds are in your favor, if not, oh well.
I had the honor of meeting Frank DeFord. His daughter died from Cystic Fibrosis at the age of seven. He took my hand and tried to put me at ease. He said "Liz your children have a much better chance. " I said "We are all members of a club that no one wants to be a member of."
I thank Frank Deford for continuing to do so much for the Cystic Fibrosis Foundation. Long after he lost Alex, he lost his fight, he continued to fight. And because of him my baby has a much better chance. I wish I could say I would do the same, I hope I would. I hope I would continue to fight after I lost everything that was important to me. I admire and I thank him for all he does for Jack and all the other children like him.
I also know, every child born deserves a chance. No matter what the cost or how much that drug company is going to make. What is the cost of that one child?
My dream is that every member of this club will get their the call. The call to say, your brother, your sister, your husband, your wife, your mother, your father, or in my case, your baby is cured. Your fight is over.
elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-1046682839698551672012-08-02T08:55:00.002-07:002012-08-02T09:08:37.012-07:00Happy Birthday My Beautiful Boy<div class="separator" style="clear: both; text-align: center;">
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August 3, 1997, that is the day Jack came into the world and set us on a course that would at times bring me to the edge.
I would like to say his deliver was ordinary, nothing remarkable. Nothing would be further than the truth. I was past my due date so my doctor brought me in to be induced. A snobby resident from California started the Petocin. I have learned that if you are going to deliver your child at a one of the best teaching hospitals in the country you are going to have to learn to put up with overly confident residents and everyone coming in and out of your room, I do mean everyone.
So Miss San Fran got everything started and then did a sonogram to see "how far down the head was". Well it was not down, not down at all, Jack had turned in the last three days and was breach. I started crying, the last thing I wanted was a C section. In walked my doctor (who I loved). She asked me the following: Have you had anything to eat? No. Drink? Yes Coffee. Cream in your coffee? Do they serve it any other way?
She left the room, came back with the perky resident and said "We are gonna flip him" Then she asked Miss San Fran if she wanted the head or the butt. It was something right out of Alien, watching them flip him. But it worked. They flipped him and one hour later, bruised and battered, Jack came into the world.
He was just a lamb of a child and I adored him from the start. If you have read my blog the beginning months were difficult. Jack was sick and his diagnosis took a blow to my family.
Within a year, Jack was this blonde ball of energy. There were times I was convinced he had some battery back, he was always on the move. Jack did not limit this to our yard or even, like most children, within view. We lost Jack everywhere, Disneyland, Malibu Beach, The Westchester Mall, there was even a lock down at Khols. He was fearless and curious and nothing was going to stop him.
The only thing that stopped Jack was the Hospital. And his only question for the Doctors during his stay "When will I be able to get back to the skate park?"
So many people have said that Jack is lucky to have me. But quite honestly, I am the lucky one. He has taught me how to live life and live it well.
So it is your birthday my beautiful boy. You are fourteen years old. I remember when you were diagnosed, Dr. Quittell told me many children with CF were making it to their eighteen birthday and going to college. It brought me to tears then. If that were still true, that was all the time I might have left with you, that would bring me to my knees now.
Much has changed during your lifetime my darling boy. There has been so much progress and mothers are being told a very different story when their children are diagnosed. This wonderful progress is the result of the kindness of others, every dollar raised, every dollar donated gives me more time with you. I will never be able to thank the generous people who make your life possible, but I carry them in my heart with you.
I once told by your lung doctor, after she had had enough of my endless calls, I will call you when there is a cure. As I have said before, I am still waiting for my call and I know in my heart I may never get it. But someday a mother will get her call and this fight will be over and we will have won.
Happy Birthday my Beautiful boy and to my dream of many more.elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-55099157475324465592012-04-26T19:04:00.001-07:002012-04-26T19:04:03.346-07:00My Life With Jack: She is beautiful Mrs. Clark<a href="http://elizabethwclark.blogspot.com/2012/04/she-is-beautiful-mrs-clark.html?spref=bl">My Life With Jack: She is beautiful Mrs. Clark</a>: I have lost count of how many times during my stays with Jack at Columbia Pres I was told "she is beautiful". Jack dressed in a hospi...elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-24137043398815685122012-04-26T16:55:00.001-07:002012-04-26T18:58:20.136-07:00She is beautiful Mrs. Clark<div class="separator" style="clear: both; text-align: center;">
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I have lost count of how many times during my stays with Jack at Columbia Pres I was told "she is beautiful". Jack dressed in a hospital gown, with long hair, gorgeous eyes and ever present smile was beautiful. My regular response "thank you, he is my favorite". Of course immediately the nurse, doctor, intern, resident who said it apologized. No apologies necessary, Jack is beautiful.
Over the years Jack's hair has come into play in many discussions. Jack has a gorgeous head of hair. When he was younger I worried what Sam's reaction would be when she figured out Jack's hair was gorgeous. Sam, my oldest, tall, athletic, smart, never lets anyone get in her way. It took a while, I think she was teen when it finally dawned her that her brother had the hair the family.
My brother Rob had the hair in our family. Jack has his hair, beautiful, dirty blonde, thick, just the right curl. That was not all Rob had. Once his closest friend Thatcher asked if it bothered me that Rob got all the brains in the family. I looked at him and said "No, what bothers me is he got the great legs." I wanted those.
I knew that from my history, my brother's hair was a huge bone contention with my father. It seemed no matter what he accomplished, his hair was always on my fathers mind. I am not sure how many time he said, "You need a haircut" Rob took course at PU, when he was in HS. My father said "You need a haircut". My brother was PG a Lawrenceville, two were accepted that year, my father said "you need a haircut". Apparently, he was offered a scholarship at the Stratton Mountain School. My father never told him that, but he did tell him "you need a haircut."
Early on, I decided my children will chose the length of their hair.
Yes I decided that after my son was diagnosed with cystic fibrosis. At seven months, I would hold him and rock him to sleep, not knowing what was in our future, how long my beautiful boy would be with me. I held true to my hair promise. When Jack was hospitalized, just after his sixth birthday, just after halloween, I told him "you do not need to wash your hair or get a haircut until you come home". I was told he would be home in three days. It was eight weeks, and he came home sick. He was not better, he was not cured. They gave up and sent home, with a provac port from which I administered medication and food. I was now in charge of Jack's life.
He came home looking like a hippie. He had dreadlocks. I stayed with my promise and he had not even washed his hair. The day before he left, the day before Christmas, Jeter came to the hospital. He brought gifts for each child. He knew their names and their stories. Jeter stayed for hours. The clip that made the news was Jack with his dreadlocks sitting on Jeter's lap. I do appreciate Jeter. He is a very compassionate man. I for one appreciate what he did for all of those sick children at Columbia that day before Christmas.
I have gotten off track here. Jack is my beautiful boy. I love him with all my heart and all his hair. I feel everyday I have with him is a gift. I think he is beautiful. To all the nurses, residents and doctors at Columbia who looked at Jack and said to me "she is beautiful". Thank you. Thank you for taking care of my beautiful boy. More importantly, thank you Jack for helping me find my way in this world. You see, you are my beautiful boy, you are a gift. Our babies, these children, they are ours for a bit. Sometimes they are with you longer, sometimes not. Love them.elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com0tag:blogger.com,1999:blog-5067854057947430161.post-14277411667630761042012-03-15T17:27:00.001-07:002012-03-15T19:10:13.703-07:00Here Comes the Sun<a href="http://www.youtube.com/watch?v=n6j4TGqVl5g"></a><br />
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It's been a long cold lonely winter. <br />
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Jack and his two friends from High School and I just got home from the US Burton Open at Stratton. I am not sure what I was thinking tossing three HS boys in the car, loading up the Thule and heading north. Normally I would not take that crew to Jerry's (the local Rye spot where everyone knows your name). I did it and I am happy I did.<br />
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Jack is home, he is not in the hospital, he does not have a picc line, he is not heavily medicated. I made up my mind early on in this fight, when he was diagnosed with Cystic Fibrosis, that we were going to live life well when we had the chance. The snow was outstanding. The boys spent most of their time in the terrain park. You needed a special pass and I was so not invited. We all watched the top snowboarders from around the world compete.<br />
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It was the 30 anniversary. Burton is sick. Burton the founder of the US Open, the founder of Burton boards, native from Vermont. Everyone came. Kelly Clark, Gold Medal winner. Hannah Teter and Shaun White. Now it's been a while since Shaun has come to the open. Some at Stratton say he commits, gets hungover and backs out. I just think he has a jet, homes and better places to be (although I cannot imagine anywhere in the world that is better than Stratton). He came. They came to thank the Burtons for all they have done for the sport.<br />
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I came because we could. When your child has a terminal illness that they have yet to find a cure for, you live differently. We do, we live for today. We make it count. We go to the US Open. I think I enjoyed watching Shaun White more than Jack. I stood at the bottom of the half pipe simply shocked by magnitude of his talent. <br />
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Now my son Jack has been on his board since he was 5. He started skiing at four. This because one weekend we took Sam and Jack to Vermont, checked them into ski school and for the first time in so many years, I was free and I skied. That weekend I rented a house for the following season and enrolled all three in the seasonal program at Stratton, the Mountain I skied at since I was 8. Jack at the beginning of the next season announced he was a snowboarder. Tears tumbled down my cheeks as the dream of my spending the season skiing at Stratton seemed to fade. I called the ski school and told them the news. Jack wanted to snowboard. Now this was ten years ago and there were not that many little kids on boards. Happily Cindy, head of the program said "Mrs. Clark whatever you bring him on, we will teach him on." <br />
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So his boarding career began. And my love for skiing is stronger than ever. I have so many memories of that mountain and the times I spent up there. And now I am building even more. <br />
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When your child is sick and in the hospital you sit and wonder, will he go to Vermont again, will he skateboard again. Am I gonna walk out the doors of the hospital with him?<br />
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My fear is that I just do not think I will ever be able to go back there. Back to a place I love so much and feel I belong without, him. Because now all my memories there are tied up with Jack.<br />
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I was told today I was ruining Jack. I was not hard enough on him. How can I be? I have watched this child spend nights in the ER, weeks in the hospital, Picc Lines, IVS, No Food, stuck everywhere, stuck 15 times in row to get an IV going, put under four times. I could go on. I have watched him fight, fight for his life. I am in awe of his strength and courage as I am Shaun White's performance in the half pipe.<br />
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He is my son, and I love him with all my heart.elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com5tag:blogger.com,1999:blog-5067854057947430161.post-61030872705379544162012-01-19T17:10:00.000-08:002012-01-19T17:10:18.696-08:00Everything's Alright<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIfU8-RwGjfPCB-uUedqUQgz-GAN8yn46NSFVmUkpff-lsRZ-uqNUrY3tljKXjfi5kIWohvHNPTUBmKFia1dxyvhK39Ezt-kpdnp83F3Y9sze5Z-V5IurbDEkDM74HCXugztAku80sOYus/s1600/images.jpeg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="237" width="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIfU8-RwGjfPCB-uUedqUQgz-GAN8yn46NSFVmUkpff-lsRZ-uqNUrY3tljKXjfi5kIWohvHNPTUBmKFia1dxyvhK39Ezt-kpdnp83F3Y9sze5Z-V5IurbDEkDM74HCXugztAku80sOYus/s320/images.jpeg" /></a></div><br />
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My brothers and sister and I are all named after saints. Kathrine, Elizabeth. Robert and David. Raised a Catholic, I went to church every Sunday. I never ate meat on Fridays during lent. I was baptized, had my first holy communion and of course my confirmation. <br />
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I believed in God and Jesus Christ. When I was ten my parents took me to see the opening of Andrew Lloyd Webber's Jesus Christ Superstar. I loved it for many reasons. It was familiar, it was what I knew. I believed it. My favorite song was Everything is alright, everything is fine. <br />
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I believed in heaven, I believed that everyone was good. I had a lot to learn.<br />
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When Jack got sick I started to question my religion. Over the years, I have spent days in babies hospitals watching my baby suffer and other babies suffer. I had to ask myself "where is God?". <br />
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I have had friends who have lost their fight, their children are gone. What God would let that happen? Some say they are in a better place. What better place than here in their mother's arms.<br />
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From the time Jack was first diagnosed, seven months old, he would sleep soundly in my arms, while I told him "everything is alright, everything is fine."<br />
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Now he tells me that. He assures me that "Everything is alright, Everything is fine." Go to sleep Go to sleep, let the world rotate without you tonight.<br />
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I once ha a vision. This little girl dressed in white came to me, and said, I am fine and I will be back to get Jack.<br />
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I know now that everyone is not good, the world is a dangerous place. But I believe that Jack is right. Everything is alright, everything is fine. Tonight.elizabeth williams clarkhttp://www.blogger.com/profile/15350498505060761997noreply@blogger.com1