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!
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.
Connor’s Crusaders is our Great Strides Walk team.
Last night while driving to Ann Arbor, Connor asked me if it is easier taking care of him now than when he was a baby. (This question along with several others about whether or not his children will have CF, etc). Of course I said ‘Yes’ it is easier now but in reality, I am not really sure.
Yes, as an infant, it was a lot more work, documentation, and follow-up visits as he was misdiagnosed for the first 3 months of his life, creating a critical medical situation by the time he finally was admitted to the hospital. He only weighed 8 pounds at 3 months despite nursing him around the clock and frequent ‘weight checks’ at the pediatrician. Fortunately, Connor thrived after starting on pancreatic enzymes and breathing treatments. He has only had 1 other hospitalization since he was 3 months old and his weight and lung function are both good.
Why would I think parenting is more difficult as he gets older? Several reasons…his questions get more challenging and while we do not want to shield him from the realities of the disease, we also do not want him to be afraid of what might happen and limit ‘living his life’.
I think the biggest challenge I face is parenting Connor with 2 healthy siblings. Connor is 2nd in birth order and I think in some respects, CF has taken a little away from our ‘first born’ who, according to birth order, is supposed to garner a significant amount of attention in this role. Connor has ‘stolen’ some of this attention and I think it has created a greater than normal amount of sibling rivalry.
This is an area I think needs more attention in terms of family support. CF does impact other family members and rarely if ever are programs offered targeting siblings of CF kids. I would welcome more opportunities to include siblings in our care and understanding as parenting a child with CF.
Our family mantra has been to always focus on the good things that have happened as a result of CF; we recognized this very important lesson when visiting Dr. Warren Warwick in Minneapolis. We learned very quickly how fortunate we are to have the extensive support system to help us in our crusade to find a cure for CF. We continually reinforce the positive aspects of having CF like receiving Target gift cards, meeting the Detroit Tigers last summer, MDPCI summer adventure packets, and more.
– Connor’s Mom
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