This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
When I was working on my second CF calendar, I met Josh Sheldon. The last time I saw Josh was two weeks before he died. I would have never guessed he was so close to losing his battle with CF. He was always trying to make others feel better, and not worry about himself. When he came to the photo shoot he was on oxygen, but in my naïveté I didn’t think it was a big deal because he told me it wasn’t. He set it aside, and was not wearing the tubing.
When Josh was born, his parents Lynne and Len were told he might make it to his 15th birthday. Lynne says that is what sticks in your brain, “So once he passed 15 years old I thought, ok, we’re beyond that. And when he got to 21 I thought that was good, but we could see his decline so each year I thought we were lucky we had this year, but I don’t know how many we have left. “
The Sheldons adjusted to live with CF. In school Len says his son tried out for every sport, swimming, football, wrestling, and track. “He never made the team because he couldn’t keep up with the physical end of it. But he did find his niche in golf. Golf is a competitive sport with yourself. He did very well. He actually ended up becoming the Captain of his High School team. And he played Varsity all through. Josh was also good at skiing, snow boarding, water skiing, and rollerblading. The hardest thing for me was to watch how his health affected how he wanted to do things. He couldn’t do them anymore. So that was hard for us.”
Josh went to college at Central Michigan University. It was a tough year for him because he got very sick and eventually had to come home. Josh decided to attend Macomb Community College. He got his associates degree in Architecture. But Josh was a fighter and didn’t complain. He hung out with his friends when he could, and faced the reality of needing a double lung transplant. Lynne says they continued to adjust each time the situation got worse, “Once he was in the hospital we adjusted. The last few years of his life, we were always in the hospital. And he was always in at Christmas. We always tried to bring him home on Christmas Eve, and we did accomplish that. One year he came home but he got really sick, and he had to go right back in after Christmas, and the same for New Years. I made big trays up of goodies and took one to the nurse’s station, so they would be busy and wouldn’t bother us, and took the other tray to his room. The three of his friends came to the hospital. I had party hats and champagne in the room. Jennifer (Josh’s sister) and her fiancé came. Everyone stayed until after midnight and then his friends took off. Josh was exhausted. He thanked us. I said you know, this is one of the best new years I’ve ever had, it really was. I didn’t resent not being at a party, or out to dinner, I was just happy that we had it there. I thought it was really nice his friends came too. They gave up part of their new years.” Josh had a major bleed in his lungs. Lynne and Len brought Josh home from the hospital after six weeks. Josh wasn’t going to get his transplant, Josh was dying.” The doctor told Lynne that Josh was only hanging on for her. Lynne didn’t think her son would make it through the night so she called her daughter, and some close friends who also picked up her Mother. There is some humor in everything Lynne says. “Josh was supposedly dying and when everyone came in the room Josh asked our friend Tom how he was doing? We all laughed. Then Josh said he was sorry, and I said for what? He said, I don’t think I’m going to die tonight.” The next morning Josh, with his voice trembling, told his mother he couldn’t do it anymore. Lynne said it was ok. The two said the Lord’s Prayer together. Lynne told her husband. Family friends were in the room too. They sat by Josh, on his bed and he passed away.
I (Laura Bonnell) went to Josh’s funeral. It was a wonderful tribute to Josh’s life. Lynne got up and spoke about her son. In my mind I was screaming for her to sit down. I knew I was going to burst uncontrollably in to tears. I did. I was crying over the death of Josh, for a mother’s pain and because of the reality of the disease. Lynne spoke beautifully about her son, the entire room was crying, but Lynne bravely reminded all of us about the amazing young man Josh had grown to be, and how he will never be forgotten because he touched so many lives.
When you meet Kathleen and Tom Armstrong, you want to get to know them better. They’re both full of energy and doing whatever it takes to keep their 11-year-old son Michael healthy and strong.
When Kathleen was pregnant with her youngest son, Michael, she saw problems in his intestines, and she knew he had CF. Armstrong had three siblings with CF. Kathleen was the only child born without CF. Having lived her entire life with siblings who had CF, and losing all of them to the disease, Armstrong is still optimistic about Michael’s future. “I have no doubt in my mind that my little ray of sunshine is going to give me grandkids, if I live long enough to see it. He is just full of energy, and he’s healthy. He has had a nagging cough before, when it’s winter, I mean what are you going to do? We put him on a strong drug. He has been on the Tobi (inhaled medication). Twenty-eight days on and twenty-eight days off. Michael is in fact doing very well. There have been little landmarks. He just broke the sixty-pound mark and I think he’s 59 inches; he’s tall enough now to go on all the rides at Michigan Adventure theme park. Every year we go and every year –nope can’t go buddy – he’s not tall enough. This year Michael finally passed the fifty-two inch mark, it was terrific. He had a blast, he fears nothing.”
Armstrong says that every once in a while Michael does get on the “poor me” train. “I kick him right off of it,” says Armstrong, “I have never allowed Michael to wallow in it because it serves no purpose.” There are times when Michael is tired or cranky and would just rather not face the realities of CF. “I will tell him, I know baby, but we have to do your treatments. I’m not Attila the Hun, but on just average days when he’s playing with this legos or whatever, I’ll ask him where he wants to do his treatment. On those days he may say he doesn’t want to do it at all. I am just insistent. I tell him to pick a place to do his treatment and he’ll finally choose somewhere like his bedroom. That’s his only bone of contention is those breathing treatments. It restricts what you can do at that time. or may disrupt playing with friends. Its just part of the plan. If his friends are over, and if he’s having his breathing treatment…paws for the cause…and the friends don’t give it a second look, the first time they asked what the treatments were all about. Michael explained it and they were ok with it. Then they go on with whatever they’re doing. That’s really cool. So his friends don’t see it, they don’t see the CF. He’s just a normal kid that has this routine.”
Armstrong says Michael has been through so much. “It makes me intolerant of people who complain about petty stuff. Get a life; do you know how good you have it? Every once and a while I just don’t want to hear it. I don’t have time for people who complain about the petty stuff.”
Michael’s Dad Tom says the hardest part for him is watching his son suffer. “I have learned from all that we have been through. It has taught me that happiness is a choice.”
Armstrong says don’t take anything for granted. “I stay home and take care of Michael, Tom Is involved in fund raising. We all do the Great Strides walk. That’s my little shield; this is what I have to do to deal with it all. I don’t like to think too far into the future. That reminds me of the siblings I lost to CF, and I don’t want to go there.
Advice Tom would give to newly diagnosed parents. “There are treatments, it will be ok. There are good things coming down the pike, don’t give up hope, do research, get information. There are a so many CF people living long productive lives. Don’t be negative, I believe in positive thinking and the power of prayer. Prayer is very helpful. And when it’s his time to go, it’s His decision, and we’ll scratch and fight and kick until then, and we’ll deal with that if it comes. He’s happy, healthy and thriving, a few hiccups here and there but I’m very optimistic. I think he has a long life ahead of him.”
Molly and Emily are courageous. No one knows what they go through to stay healthy. Even I can’t tell you exactly what they’re thinking or feeling, only they can do that. But what I see in them is a will to live, a fight to stay healthy and determination not to let cystic fibrosis define them. They act like CF is no big deal. They have never used CF to get anything, or as an excuse for why they can’t do something, or to get anyone to feel sorry for them. If anything, they feel and worry much more about others.
Molly will push herself when sick, and go to school anyway. She is tough. Even when I ask her to stay home, she insists she is fine and has to go to school. She had the picc line team put in her line, in her arm, without any medication one time. That is unheard of. She was again, trying to be brave and make it easier for the team. But it was extremely painful and she will never do that again! Molly had a couple of sinus surgeries. Polyps filled her sinus cavities and were coming out the end of her nose. She couldn’t smell or breathe from her nose.
Molly waited months and months to admit that maybe she needed surgery. She is big on saying that everything is fine, because she can tough it out. After her surgery Molly was acting like she was ok, so I let her have a couple of friends over, and as she watched them dance and laugh around her bedroom, she realized she wasn’t feeling that well, and maybe she’d better take it easy. I have to remind myself to make Molly take it easy, because she always wants to get right back in the mix of things. She was having excruciating headaches after surgery. She could not function.
So we took her back to the surgeon. In the doctors office they started pulling out big scabs. Molly started to sweat, turned white and was passing out from the pain of the procedure. She thought she could handle it without medication. Molly wasn’t any better after that procedure. I told the doctor they had to take her back in to the operating room and fix it. And told Molly she cannot do that again without being medicated. You can be strong and brave, and happily medicated! Molly’s headaches went away after the second surgery thank goodness, but she has no sense of smell. Molly doesn’t let that faze her; she doesn’t let much of anything stop her from her goals or dreams. We are very proud of the young woman she is becoming. Molly is the poster child of an extremely healthy person with CF.
Hopefully I can make you understand what I am saying about Emily. When you look at Emily, unless she is looking extremely pale or thin that day, you would never know she has CF. Most people don’t know how hard Emily has to work to stay healthy.
Compliance to medical treatments is sometimes challenging. The girls are involved in so much at school. There is a bonfire, or a sleepover or life is just rolling along at a fast pace, and we have missed treatments.
When Emily misses treatments, or gets a cold it impacts her in a big way. She gets pneumonia or her pulmonary function levels go way down. Emily has always had to work harder to stay healthy. On the soccer team she would get a low-grade fever because she was working so hard, same with gymnastics and volleyball. So finally we all decided Emily should just try to get through the school year and be healthy. It was a hard decision; because it is so important to be athletic especially because you have CF. But it was making her sick. In addition, Emily has had chronic intestinal pain, for five years now. It is debilitating for her, she misses a lot of school. Can you imagine having a headache every day, or gut ache and trying to think and work all day? Emily is a trooper, pushing through her pain. Usually, if she were in horrible pain, you wouldn’t know it. She would talk to you and then in the privacy of our home cry or double over in pain. She pushes through school this way too.
Emily did the same thing when we took her to Cedar Point for her 13th birthday. She was having severe stomach pain but didn’t want to mess up the adventure for her friends, so she pushed on. She told us the pressure of the rides on her stomach, actually seemed to help a little. It breaks my heart that we can’t figure out how to stop the pain. The doctors can’t figure it out either. Emily is brave, and a fighter. We are very proud of her. This, as anyone with CF, is just a small window into what the girls deal with daily.
Live – breathe – inspire.
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