Health & Wellness
Katie Frantz in Chicago, IL
Raising a Child with Cystic Fibrosis, and Still Finds Time to Dance
Katie makes raising a child with Cystic Fibrosis look graceful. She has a ferocious determination to learn as much as she can about her son’s disease, and a contagious positive outlook. Next to Katie is her partner of seven years, Conan. Together, their patience, love, and support of one another has helped them to prevail at raising a smart, hilarious, daring, and spirited two year-old son. I Admire U Katie for tackling the unpredictable change in your role of motherhood and your relationship, with a contagious laugh and heartwarming positivity.
Katie in her own words...
1. Once you and Conan confirmed you both tested positive as carriers for Cystic Fibrosis, how did you help each other stay positive up until labor?
Once we had a plan in place for all possible outcomes, we were able to relax a bit and enjoy just being pregnant. We kept the diagnosis to ourselves and a couple of other family members for much of the pregnancy because we wanted to keep things as normal, and optimistic as possible. We took lots of walks, at tons of ice cream, and tried to enjoy each other’s company as much as possible before we became three. We talked a lot about what we thought our little man would be like, would he have Conan’s hair or my eyes. Would he be shy or outgoing, silly or serious? We didn’t focus very much on would he be very sick or a little sick. We thought a lot more about what things we could do to keep him as healthy as possible and live a fulfilled life.
2. After your adorable K arrived, did you take any courses or join any support groups? How did they help?
The specialist we see hosts dinners from time to time for families and those are kind of like a support group. One of the most alienating things about CF is people with CF cannot be around each other. This is because the bacteria that infect the lungs can spread very easily and can cause catastrophic lung damage. I found a couple of Facebook groups that are full of positive people that are like minded in the ways of natural medicine. Early on I joined a group for moms of children with CF, but noticed it was not a positive group. It was more of a place to go to vent the ugly of CF, and seeing those comments on my news feed everyday was counterproductive. I also do a ton of research all the time. There's something empowering about that for me.
"I don't think anyone realizes how hard we have to work to keep him looking that healthy."
3. Your day begins with K’s liver medication and a twenty-minute vest treatment to help break up any mucus in his chest, and each day you are challenged with getting him to eat, how do you center yourself throughout the day? What is your outlet?
It’s taken me a while to realize this but the best thing I can do for all of us is to take time for myself. In the beginning I neglected this because there was always something I could be doing for K, so I was putting me last. I know I can’t always get out and get a mani/pedi (my last one was on K’s due date), but I can crank up Pandora and dance and sing at the top of my lungs while loading the dishwasher. On days that I can manage to sneak out of bed before 6am, I go for long walks with my headphones on. The other thing I do, and this is going to sound strange, but I allow myself a good cry from time to time. It’s a release for me. It’s OK to be angry and sad. I used to get mad at myself, thinking I was weak for letting the tears flow, but I can see now that in those tears, I am releasing those feelings of sadness, anger and frustration, that are all legitimate, to make room for healing and positive energy.
4. Many toddlers are picky eaters. K is a picky eater and he has to consume fifty-percent more food in a day than the average toddler. What tips have helped you meet his caloric intake? You cook a lot, is there a recipe that is a complete home run?
We try and add calories but in a healthy way and without adding bulk. Each calorie should have some nutritional value beyond being a calorie. We use healthy fats, powdered goat’s milk (easier to digest than cow’s milk), eggs, butters, etc. His all-time favorite recipe is my peanut noodle recipe. (you can copy and paste or link to my blog: http://confessionsofacosleeper.tumblr.com/post/85831598144/peanut-butter-noodle-time-peanut-butter-noodle-time) I use penne noodles and we pretend they are trumpets blaring, so he calls them his DUPE DEE DOO noodles. It makes me smile from ear to ear when he says, “Mamma Dupe Dee Doo noodles please.”
5. Maintaining and increasing K's weight is an emotional uphill battle, in which you and Conan manage not only with calorie counting, but also regular doctor check-ups. How do you bounce back after a tougher weigh-in?
We've recently started a new tradition of going bowling immediately after a visit, good or bad. Once home it's a little bit harder not to become obsessive. I try to cook more and get K involved in preparing his meals and snacks. I try and find ways to get K excited about food and eating. Anyone who has ever had a toddler/preschooler knows that can be a challenge even without CF as a factor. Checking in with other moms on what their little ones like to eat and how much they eat, always helps me gauge where we are.
6. When you meet people that don’t understand CF and you come across different misconceptions about CF, do you find yourself compelled to educate people on the truth? What do you think the biggest misconception is?
I wonder sometimes if people think it's contagious. As he gets older, the lungs are expected to gunk up more and he will develop a chronic cough. I suspect people will assume it's something they can catch. I also think people look at him and see he looks like any other kid so it's not a big deal. I don't think anyone realizes how hard we have to work to keep him looking that healthy.
"I know I can't always get out and get a mani/pedi, but I can crank up Pandora and dance and sing at the top of my lungs while loading the dishwasher."
7. Starting a blog had been on your to-do list for a while, and you finaly did it! What motivated you to kick off your blog, confessionsofacosleeper.tumblr.com ? How has it helped you?
I really wanted to create a place that would be a resource for other parents in our position. I spend a ton of time on Google and there is so much negativity out there. I remembered getting the diagnosis and seeing all of that negativity on the internet and it was not productive. We are a tribe of mothers and women and we need to help one another – it takes a village. I really want to do all I can to help the mothers of other children with CF see that you don’t have to live your life in a bubble and you can feed your child healthy foods and gain weight. If there is just one mom out there that benefits from something I’ve written, that helps me tremendously. I feel I have contributed something positive and maybe made someone smile today.
8. You and Conan have been together for seven years. What do you do to try to balance both your relationship and raising a child with CF? What’s worked for you?
This is a tough one because I feel like we are still struggling with this. I think it’s important to spend time alone together and to find something that interests you both that you can do together. It’s also important to make plans for the future together. We work on all of the above all the time. It’s not something that just comes naturally. I had always heard a good marriage requires lots of work, and I remember thinking, but if you love someone it shouldn’t be work. Well me today thinks, if you love someone, you want to do the work.
9. I’m curious, what’s next for you?
It's more like what's "now" for us. We live life very much in the present these days. I consider it one of the better side effects of CF. Enjoying the here and now and being present in the moment. A year from now, we could be stuck in a hospital room for weeks on end, there's always that possibility, or we could be vacationing on a beach. We're not completely planless, we're reducing debts, working on the house, and exploring homeschool.
10. I Admire U, who do you admire?
There are many people that I look up to for strength, wisdom and guidance. My grandma, on my father’s side, delivered my father premature 60+ years ago. Science not being what it is now, it’s amazing to me that he is the healthy and wise man that he is today. There’s my best friend who just retired from the Navy. She is a single mom who had to leave her son while on deployment. I can’t even begin to imagine what that was like for her. These two women gave me strength while K was in the ISCU.
Once we had a plan in place for all possible outcomes, we were able to relax a bit and enjoy just being pregnant. We kept the diagnosis to ourselves and a couple of other family members for much of the pregnancy because we wanted to keep things as normal, and optimistic as possible. We took lots of walks, at tons of ice cream, and tried to enjoy each other’s company as much as possible before we became three. We talked a lot about what we thought our little man would be like, would he have Conan’s hair or my eyes. Would he be shy or outgoing, silly or serious? We didn’t focus very much on would he be very sick or a little sick. We thought a lot more about what things we could do to keep him as healthy as possible and live a fulfilled life.
2. After your adorable K arrived, did you take any courses or join any support groups? How did they help?
The specialist we see hosts dinners from time to time for families and those are kind of like a support group. One of the most alienating things about CF is people with CF cannot be around each other. This is because the bacteria that infect the lungs can spread very easily and can cause catastrophic lung damage. I found a couple of Facebook groups that are full of positive people that are like minded in the ways of natural medicine. Early on I joined a group for moms of children with CF, but noticed it was not a positive group. It was more of a place to go to vent the ugly of CF, and seeing those comments on my news feed everyday was counterproductive. I also do a ton of research all the time. There's something empowering about that for me.
"I don't think anyone realizes how hard we have to work to keep him looking that healthy."
3. Your day begins with K’s liver medication and a twenty-minute vest treatment to help break up any mucus in his chest, and each day you are challenged with getting him to eat, how do you center yourself throughout the day? What is your outlet?
It’s taken me a while to realize this but the best thing I can do for all of us is to take time for myself. In the beginning I neglected this because there was always something I could be doing for K, so I was putting me last. I know I can’t always get out and get a mani/pedi (my last one was on K’s due date), but I can crank up Pandora and dance and sing at the top of my lungs while loading the dishwasher. On days that I can manage to sneak out of bed before 6am, I go for long walks with my headphones on. The other thing I do, and this is going to sound strange, but I allow myself a good cry from time to time. It’s a release for me. It’s OK to be angry and sad. I used to get mad at myself, thinking I was weak for letting the tears flow, but I can see now that in those tears, I am releasing those feelings of sadness, anger and frustration, that are all legitimate, to make room for healing and positive energy.
4. Many toddlers are picky eaters. K is a picky eater and he has to consume fifty-percent more food in a day than the average toddler. What tips have helped you meet his caloric intake? You cook a lot, is there a recipe that is a complete home run?
We try and add calories but in a healthy way and without adding bulk. Each calorie should have some nutritional value beyond being a calorie. We use healthy fats, powdered goat’s milk (easier to digest than cow’s milk), eggs, butters, etc. His all-time favorite recipe is my peanut noodle recipe. (you can copy and paste or link to my blog: http://confessionsofacosleeper.tumblr.com/post/85831598144/peanut-butter-noodle-time-peanut-butter-noodle-time) I use penne noodles and we pretend they are trumpets blaring, so he calls them his DUPE DEE DOO noodles. It makes me smile from ear to ear when he says, “Mamma Dupe Dee Doo noodles please.”
5. Maintaining and increasing K's weight is an emotional uphill battle, in which you and Conan manage not only with calorie counting, but also regular doctor check-ups. How do you bounce back after a tougher weigh-in?
We've recently started a new tradition of going bowling immediately after a visit, good or bad. Once home it's a little bit harder not to become obsessive. I try to cook more and get K involved in preparing his meals and snacks. I try and find ways to get K excited about food and eating. Anyone who has ever had a toddler/preschooler knows that can be a challenge even without CF as a factor. Checking in with other moms on what their little ones like to eat and how much they eat, always helps me gauge where we are.
6. When you meet people that don’t understand CF and you come across different misconceptions about CF, do you find yourself compelled to educate people on the truth? What do you think the biggest misconception is?
I wonder sometimes if people think it's contagious. As he gets older, the lungs are expected to gunk up more and he will develop a chronic cough. I suspect people will assume it's something they can catch. I also think people look at him and see he looks like any other kid so it's not a big deal. I don't think anyone realizes how hard we have to work to keep him looking that healthy.
"I know I can't always get out and get a mani/pedi, but I can crank up Pandora and dance and sing at the top of my lungs while loading the dishwasher."
7. Starting a blog had been on your to-do list for a while, and you finaly did it! What motivated you to kick off your blog, confessionsofacosleeper.tumblr.com ? How has it helped you?
I really wanted to create a place that would be a resource for other parents in our position. I spend a ton of time on Google and there is so much negativity out there. I remembered getting the diagnosis and seeing all of that negativity on the internet and it was not productive. We are a tribe of mothers and women and we need to help one another – it takes a village. I really want to do all I can to help the mothers of other children with CF see that you don’t have to live your life in a bubble and you can feed your child healthy foods and gain weight. If there is just one mom out there that benefits from something I’ve written, that helps me tremendously. I feel I have contributed something positive and maybe made someone smile today.
8. You and Conan have been together for seven years. What do you do to try to balance both your relationship and raising a child with CF? What’s worked for you?
This is a tough one because I feel like we are still struggling with this. I think it’s important to spend time alone together and to find something that interests you both that you can do together. It’s also important to make plans for the future together. We work on all of the above all the time. It’s not something that just comes naturally. I had always heard a good marriage requires lots of work, and I remember thinking, but if you love someone it shouldn’t be work. Well me today thinks, if you love someone, you want to do the work.
9. I’m curious, what’s next for you?
It's more like what's "now" for us. We live life very much in the present these days. I consider it one of the better side effects of CF. Enjoying the here and now and being present in the moment. A year from now, we could be stuck in a hospital room for weeks on end, there's always that possibility, or we could be vacationing on a beach. We're not completely planless, we're reducing debts, working on the house, and exploring homeschool.
10. I Admire U, who do you admire?
There are many people that I look up to for strength, wisdom and guidance. My grandma, on my father’s side, delivered my father premature 60+ years ago. Science not being what it is now, it’s amazing to me that he is the healthy and wise man that he is today. There’s my best friend who just retired from the Navy. She is a single mom who had to leave her son while on deployment. I can’t even begin to imagine what that was like for her. These two women gave me strength while K was in the ISCU.
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