When I was working as a nurse in the Children’s Hospital, I occasionally had to take care of patients with Cystic Fibrosis. (Remember, this is before I ever had kids of my own with CF). But, if I’m honest, I didn’t want to. Why? First of all, these kids always needed a lot of medicines, and frequently! So that always took a lot of extra time and made my day more demanding than it already was. And secondly, the mothers just seemed “too involved”. They seemed overly stressed about the details and weren’t always very nice. They often wanted to take control and wouldn’t just let me do my job as their nurse! (Over generalizing here but it felt like a common theme.) They even wanted to keep their kid’s medications (enzymes) in their room and give them themselves? No, that wasn’t allowed.
Wow, I really had no idea. Now, I assure you I was never rude to them or spoke these ill feelings toward them out loud, nor did I treat them unkindly. But it just felt overwhelming on many levels to care for them. If only you could walk a day in someone else’s shoes, you might just understand why they act the way they do, right? Little did I know, I wouldn’t just walk a day in their shoes, but as soon as I became a mother, I too, would join their company as a “CF Mom” and would walk in those shoes every day for the rest of my life.
So what’s it like? Why is it such a hard job? Well first of all, I think its commonly understood that being a mother is a demanding job regardless of the circumstances. Having a little human (or many little humans) who depend on you for all of their needs requires a lot of attention, a lot of work, and a lot of emotional investment. But being a mom to a child (or children) with a chronic illness tacks on an additional to-do list that can often feel daunting, both physically and emotionally.
- You feel the weight of their future on your shoulders. Taking care of a child with Cystic Fibrosis is a BIG responsibility. You are told that the average life expectancy is somewhere in the mid-30s to early 40s. And you are given a long list of things you must to do to take care of them every day in order to keep them as healthy as possible. You know that this life expectancy is an average which means some are going to get sick sooner and aren’t going to live that long, and others are going to exceed those expectations and live longer. When you look at your children and feel that immense, unconditional love for them, when you cannot even fathom a life without them, when it hurts you so deeply to imagine them not being able to live out their dreams and have children and grandchildren one day, when your heart literally aches fearing the suffering they may endure one day…you become determined to do all you can possibly do to give them a greater chance of exceeding those odds. And you feel like their future literally depends on you doing a good job taking care of them.
- You have a lot to manage every day. It takes daily commitment and perseverance to manage all that is required of this disease on a daily basis. There are a lot of medications that must be given multiple times a day every day, there is the task of daily airway clearance, breathing treatments, worry over nutrition and caloric intake, concerns over prevention of illness and infection control, GI and hydration concerns, need for exercise, frequent doctor’s visits, frequent trips to the pharmacy, worries about the future, financial and insurance needs, school management issues, and the list goes on. It is also a very fluid journey and the needs are always changing as your children grow. One infection can throw everything for a loop and adds even more work and worry. Each stage presents new challenges and each child – each person – is different in their experience with CF.
- You have to play the balancing game of physical and mental health. You know that it is up to you to take care of all of your child’s needs at this point in their life, both physically and emotionally. And doing your best to keep them from getting sick is part of that. But you can’t just keep them away from germs all the time either. Kids are going to get sick. Period. So if they are around other kids and if they go to the park or birthday parties or play museums or school, they are going to get sick too. You know that but it still makes you cringe when you see a snotty kid or someone cough near your child. You still have to try to limit those infections where you can. They still deserve the opportunity to develop socially like their peers and friendships and childhood experiences are still vitally important for their emotional well being. So you learn to ride the see saw and balance the two in an attempt to give them a happy childhood while also maintaining their physical health.
- It can be very isolating. Being a mom to a child (or children) with CF can often feel isolating because there are few people in the world who know what you are going through on a daily basis. Even if you have a great network of support from family and friends, no one can fully grasp the depth of the challenges, the fears, the exhaustion, the worry, and, at times, the heartache that you feel unless they too have a child with CF. There is usually a ring of support around you after the diagnosis but that soon fades and people no longer seem to notice the struggle you live with every single day. That can be a good thing because that usually means that you are out and moving again, and have a smile on your face, and people you see you living life happily with your kids. But when the sadness creeps back up again, when you’re feeling overwhelmed and overspent, it’s often hard to know where to turn. You likely don’t know many, if any, other CF moms who are going through what you are and even if you did, it would be hard to just start up a friendship. Not to mention, your kids can’t play together since 2 people with CF aren’t supposed to be within 10 feet of one another. (Unless you are siblings, like mine are, then you don’t have a choice!) When my first daughter was diagnosed at 2 weeks of age, I didn’t know anyone in a similar position as me. I had no one to troubleshoot with. No one who had given enzyme capsules to a newborn before or had any tips/tricks to share. No one to talk to about the emotional roller coaster I was on, to ask how to feed salt to a newborn baby, or for any advice on how to get my picky toddler to eat enough calories. The doctors, nurses, and dietitians were all wonderful and had some tips to try but they had never actually had to do it to their own kid. They weren’t living it. I remember wanting to talk to someone who knew what it was like but also wanted to distance myself from those very people whose kids may have been in a sick, more advanced state. I wanted to protect myself from anything negative. That was one of my motivations behind starting this blog. I wanted to put myself out there as a resource for new moms to see that yes, it can be hard, but you can also be encouraged and hopeful and see that your child really can have a normal and happy childhood.
- It motivates you even more to live life with your kids to the fullest. No one knows how much time they will have with their children. It’s a fact of life. You never know if your children will be in a car accident at a young age, develop a rare disease, or lose a battle with a terminal illness. It can be a crippling fear for some parents. For those of us with children with CF, we are told our children are going to live a shortened life. It’s like they are given an expiration date as soon as they enter this world. For me, I try not to think on it too much. But the reality still exists that both of my girls have a disease that will likely end their lives sooner than their peers. We still have an immense amount of hope that new therapies will extend their lives and that we will possibly even see a cure within their lifetime. But there is no way to know, so either way, they are here with us now. And I want to make the absolute most of this time with them. I want to make so many happy memories with them and give them ample opportunity to love and enjoy the lives they have been given. I want to teach them to love life, to try new things, to learn and experience as much as they can, to travel, to love well, and to make friends, not enemies. I want to fill their little hearts and brains with so many wonderful life moments that at the end of their lives, they can say the quality of their lives was way more valuable than the quantity.
So that gives you a little more insight into what it’s like to be a CF mom. Now I understand why those CF moms in the hospital were so on edge. They were emotionally and physically spent. And caring for their child’s illness at home everyday made them the expert, not me! Someone once told me, this must just be your calling. Not something I would have chosen for myself, but it could be far worse, so since this is the job I have been called to do everyday, I will do by best to do it well. And I’m not going to complain because of the lot I’ve been given, because without this new title, I wouldn’t be Kelsie and Mackenzie’s mom. And that is exactly who I want to be, forever. So I’ll take it as it is, I’ll make the most of it and I will learn how to be the best at being a CF mom as I possibly can. But next time I’m late, or snippy, or look a little frazzled, maybe you can empathize a little more with what we CF moms do every day and give me a little extra dose of grace. 🙂