by Amanda Buck
When someone learns for the first time that my 4-year-old daughter has a rare disease called cystinosis, their face will usually morph from happy and pleasant into one of concern and pity. While I appreciate their compassion and willingness to express their condolences, sometimes I find myself annoyed by their reaction. Particularly when they don’t know just how amazing she is. My little girl is full of spunk, laughter and courage and her disease is only a tiny part of her story.
While day dreaming about the child I one day hoped to have, I’ll admit that I never once imagined her with a chronic medical condition. When she was diagnosed with cystinosis, I was devastated. I worried about her future and the life she would have. There have been significant challenges that my family’s faced, but incredible things have happened because of those challenges.
Raising a child with a medical condition can be terrifying and overwhelming and I think most people, who don’t know me or my child, tend to assume this must always be the case. Today, I want to tell those people that they couldn’t be more wrong. Our lives are filled with love, beauty and joy.
5 Reasons Why Raising a Child with a Medical Condition is Kind of Incredible
- We want to truly LIVE
I have a much deeper appreciation for life now than I did before my daughter. Life is precious and in the grand scheme of things, our time is short. I want to make the most of it and do all sorts of things. Things that I love, things that scare me and things I’ve always wanted to do. I don’t want to look back on my life with regret and “what ifs,” and I certainly do not want that for my children. They have the world at their feet and I will fight hard to ensure it stays that way.
- Their joy is sacred
There is nothing that makes me feel better in this world than my two kids’ laughter and happiness. While this is probably true for most parents, I think that it takes the absence of joy to really appreciate it. Once you’ve watched your child go through days, weeks, months and maybe even years of feeling sick and struggling just to make it through the day, their sudden return of smiles and laughter will lift you up and set your spirit on fire. Their uninhibited bliss is something that keeps me going in dark times and something I will never take for granted.
- We know what’s important
I have a lot of things that I worry about. I worry about things like my daughter’s future, what her best course of treatment will be and how my son will cope with it all as he gets older. What I don’t worry about are things like if their birthday parties will be Pinterest-worthy, what a doctor might think of me if I question their decisions, or what that one peripheral friend meant when she said, “You look so great, I almost didn’t recognize you!” The latter worries are things that I simply don’t have the time or energy for and I know that I’m better off this way.
- We’ve made inspiring new friends
A lot of people who deal with medical issues – in themselves or in someone they care for – find that they lose friends along the way. Unfortunately, sometimes people don’t have the empathy or compassion required to stick around. The good news is that you’re never alone in your plight. We’ve made some incredibly supportive and amazing friends through the online cystinosis community. We’ve never met most of them in person but they know exactly what it’s like and exactly how we’re feeling. I care deeply about these people and their families and that connection has considerably eased my pain through this journey.
- We want to be better, more compassionate people
Elisabeth Kübler-Ross said, “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” I believe this to be 100% true. My life before cystinosis was one of blissful ignorance. But now my eyes have been opened and I’m thankful for that. There is much good that can be done in this world, and I would like to give it a try.
Despite these invaluable lessons I’ve learned, my daughter’s diagnosis still fills my heart with grief. At the end of the day I would give anything to take away her disease. But until that time comes, I will continue to treasure our life just as it is now and hopefully give others the courage to do the same.
I may not lead the life I dreamed about all those years ago but it’s still beautiful, full of hope and kind of incredible.
Amanda is a mother to two beautiful children and began writing after her daughter was diagnosed with the rare disease cystinosis. She started the blog Elsinosis: Living with Cystinosis to chronicle their story, advocate for her daughter and help other families in similar situations look for their silver linings. Her writing has appeared on the Good Mother Project, Coffee + Crumbs and The Mighty to name a few. She was a cast member of Vancouver’s inaugural Listen To Your Mother Show and recently co-edited the anthology Strength: Lives Touch by Cystinosis soon to be available on Amazon. You can follow her family’s story on her blog, breaktheparentingmold.wordpress.com and on social media.
