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On Parenting: Life Lessons from a Mother with Cystic Fibrosis

Cystic Fibrosis Canada will be profiling different journeys of fertility and parenting with CF, this is the first in a series. If you are interested in sharing your story please email tgillespie@cysticfibrosis.ca

My name is Megan Parker, I am a 31 year old mother, wife, and a (very part-time) practicing Occupational Therapist. I love everything to do with the mountains and enjoy far too many hobbies. In short, I have a full and beautiful life. Tucked away beneath the surface, my battered body will reveal my Cystic Fibrosis and CF Related Diabetes.

My husband and I met in January 2006 while completing our Undergraduate Degrees and started dating later that year. We married in September 2008, and two years later were eager to expand our family. Thankfully, with the support of a dedicated CF team, my disease did not prevent me from achieving my dream of pregnancy and motherhood. Ultimately, it took 2.5 years and 7 failed fertility treatments before I was lucky enough to get pregnant. We had undergone in-vitro fertilization; transferring one embryo that we had hoped would become our child. To our huge surprise, our one little embryo had split into two. Two little boys, Charlie and Desmond, became the loves of our lives when they were born in the fall of 2013.

Just as I would be naïve to think that my Cystic Fibrosis hasn’t helped shape me into the person that I am today, it would be foolish to think that my Cystic Fibrosis would not impact who I am as a mother. This disease so deeply penetrates not only my life, but the lives of those around me. When I am unwell, which is increasingly becoming the norm, the effects become glaringly obvious. Even when I am well, its reach extends in more subtle, yet inescapable ways.

While I know that having a mother with a cruel and unrelenting disease won’t always be easy or pretty, I am hopeful that my boys will be able to use their experiences to help them gain some perspective on what is truly important in life. I have learned a great deal about myself and life through my Cystic Fibrosis. Some of the lessons that I hope my children will be able to take away include:

  • In a world where appearances can be deceiving, kindness and empathy go a long way. Trust me. I can still look really well put-together, even on days where simply breathing is a struggle, when my fevers are high and debilitating from chronic lung infections, or when my mood deteriorates because of the challenges I’ve been through. Clothing choices can cover IV tubes, spending a small amount of time on hair and makeup can disguise my fatigue, and creative time management can conceal the fact that I spend nearly 3 hours per day doing medications. There are so many reasons why appearances can be misleading or why people might not openly share their struggles. Offer compassion, be empathetic, and take the time to realize that there may be more to somebody’s story than what is on the surface. Treat all people with the kindness that you would like to be treated with during your most trying times.IMG_9920
  • Accept and be open about your vulnerabilities. We are all human and so we all experience losses have dreams that go awry, endure heartbreaks, and undergo setbacks. For me, I’m still working through the grief of losing my stable health, the realisation that my long-term career goals are likely unattainable, and the loss of the ability to plan ahead without needing to think of limitations imposed by my disease. Perhaps by being open about our own vulnerabilities, we can all relate to one another a little better and further perpetuate kindness, compassion and empathy towards each other. You will be surprised by the degree to which people will rally behind you when you open up in times of need. I was absolutely astounded by the incredible amount of love and support I received when I opened up about the extent that my CF impacts me. When I ultimately had to come off work for a while due to frequent lung exacerbations, the people around us ensured our freezer was stocked with meals, and I had so many people reaching out to me to share words of encouragement.IMG_9430
  • Be resilient in the face of set-backs. I hope I can lead by example as I try to navigate what seems to be a never-ending string of poor health with grace, strength and courage. Being resilient means accepting that some things are difficult and are going to test your limits physically, cognitively, and emotionally, but are still worth persevering and pushing through. I want my boys to understand that resiliency does not mean being stoic and pretending that you are OK when you are really struggling. Rather, being resilient depends on innovative problem-solving, having the right kind of support, and being honest and open with yourself and others. It means admitting when you need to lean on others for support, encouragement, and guidance.IMG_0878
  • Surround yourself with people that will support you when you need it. I am fully aware and appreciative of the support that I have grown to rely on to keep pushing through these challenging times for my health. I would really struggle if it weren’t for the support of my husband, family, and friends. My husband endlessly enables me to have extra time to do my medications. He wakes up with the boys early on weekends so that I can catch up on some extra sleep. He takes the boys out to do our weekly grocery shopping and lets me stay home and do my medications. He’s my equal when it comes to household and family responsibilities, and takes on way more of his share when I’m feeling unwell. Furthermore, he’s somebody that I can confide in when I am feeling disheartened. He constantly encourages me to be the best version of myself, in good times and bad. My struggles would seem a whole lot more insurmountable without his support. In addition, my family is a constant source of support and has helped me in so many ways during my parenting and CF journey. Whether it was coming over during my maternity leave to ensure I got some “adult time”, to watching the boys so I can attend medical appointments, to taking them for their first sleepover (when they unfortunately developed Hand, foot and mouth disease and did not sleep the entire night….), to supporting my emotional needs, to bringing my kids to visit me in the hospital, to cleaning the house for us, to moving in with us while I recovered from surgery or while I was admitted to hospital, and an endless amount of other ways they have supported me, I can’t even begin to imagine what life would be like without my incredible family.IMG_0711
  • Be deliberate with your time. I can’t stress planning, time management and prioritization enough (and I would be a bad Occupational Therapist if I didn’t bring up these concepts!). I juggle many roles and responsibilities, most importantly ensuring that I do everything that I can to keep on top of my Cystic Fibrosis that so that I can successfully be the best mother and wife that I can be. This means being creative with my time, especially when it comes to getting my inhaled medications and chest physiotherapy completed. I feel strongly that there is always time for meaningful experiences. In a time of life that seems incredibly over-run with commitments and responsibilities, ensuring that we have the time together as a family is a choice that we have to make. It means prioritizing time together. That means that the house might not be spotless, I might sometimes forget the last time the bed was made, projects take longer, and hobbies are pushed aside. Finally, it’s important to make time for yourself. No matter how busy you are, no matter how many roles you are fulfilling, you need to take time for yourself. You can’t take care of anybody else unless you take care of yourself first. Sometimes you need to be selfish in order to be selfless.IMG_1017
  • Growing old is a privilege that far too many do not get to experience. Birthdays and milestones are worth celebrating. Wrinkles and grey hairs are to be admired, and not begrudged. Do what you can to take care of your body and mind, listen to yourself when you know something is feeling off, and be your own best advocate. Finally, and most importantly, tell your loved ones how much they mean to you. Put in the effort to be there for the beautiful times and show up when times are more challenging. Important relationships in your life are worth investing your time and energy.

I am positive that even a minimal amount of thought and introspection could yield many more life lessons. While I may not necessarily love the source of my insight, I am grateful for the perspective on life that my CF has enabled me to have. I believe that the love of my family, the love from and for my husband, and the pure joy of having our boys call me Mama offers me an even deeper appreciation for the important things in life. My children mean the absolute world to me. I am hopeful that my reflections and their experiences are of value to them as they continue to grow and live and love.

 

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