Lately I’ve thinking about how my life has been clearly divided between life before a rare disease diagnosis and life after. This feeling is never more apparent than when I’m looking back at old photographs of my daughter. Although she’s had this disease all of her life we didn’t know about it until she was 15 months old. That’s 15 months we had of parenting a completely healthy child, blissfully ignorant of life with a rare disease. Sometimes it’s hard to look back on this time without feeling the pain of her diagnosis all over again.
My daughter has a rare metabolic disease called cystinosis, where her cells are not able to recycle the amino acid cystine. Cystine gets stuck and as it accumulates it begins to crystalize eventually causing cellular death. This wreaks havoc all over her body and causes damage to multiple organs. In the case of my daughter her kidneys and eyes were already affected by the time she was diagnosed. But luckily with a long list of medications and strict compliance her prognosis is good and she is, for the most part, a healthy preschooler.
When I first login to Facebook they like to display a photo memory and not too long ago it was a picture from 3 years ago of my daughter and I celebrating my first Mother’s Day. At first it made me smile but my mood quickly darkened as I thought about that time. I couldn’t match my current self to the happy mother smiling back at me. Not to say that I’m not still a happy mother, but it’s a different kind of happy now. This mother looking back at me was living a life that I can no longer have. One devoid of regular check ups at the hospital, a long list of medications and rigid schedule to keep track of, and most importantly she was missing the stress and worry for her child’s future.
That mother didn’t lay awake at night worrying that she may not be a matching donor if her daughter needs a new kidney. She wasn’t worrying about finding a health insurance plan which covers a pre-existing condition and is actually affordable. And though she was still waking up throughout the night, it was to feed her little baby, not to wake her sweetly sleeping child up to force disgusting medicine on her.
So many memories from our time before cystinosis have now become bittersweet. I look back on them and wonder if I should have known, if I should have looked harder. Were the signs right in front of my face and I chose to ignore them? Could I have made a significant difference in her future if I’d just pushed the doctors harder when I was worried she wasn’t eating?
I know questions like this are a waste of time but still they’re hard to quiet. Worrying about it does me no good, just as worrying about the things I can’t control in the future does nothing but cause me more anxiety and stress. Usually when I find myself in this depressive slump I try to remind myself of all the good things that have happened in my new life after cystinosis.
Sometimes I think of this quote, which sums up my feelings perfectly.
“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.”~ Elisabeth Kübler-Ross
There is no doubt in my mind that cystinosis has made me a better person. I also believe that it’s made my family stronger and only increased our love for one another. For all the pain and heartache that cystinosis has brought into our lives, it’s also allowed our joy to burn more brightly.
I’ll never be able to help this feeling that I’ve lived two separate lives. Cystinosis has changed me and my family irrevocably and letting myself feel all the not so great feelings of loss and longing for a simpler time will hopefully allow my heart to heal in time. But until then I continue to remind myself of all the good in my life. And at the moment there’s so much good!
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, www.elsinosis.com, and on social media.