by Amanda Buck
I know that right now your heart is breaking for your precious baby. You may have been completely blindsided or you may have known for some time that something was not right but your heart hurts just the same. This was not the future you had dreamed of, this was not even something you thought could be possible. And now that you know, life will never be the same.
My daughter was diagnosed with the rare disease cystinosis at just 15 months old. Suddenly we were thrust into a world of blood draws, doctors appointments and having to administer a lot of medication, even in the middle of the night. All while trying to come to terms with our feelings of heartbreak, uncertainty and injustice. In short we were devastated. We’d never heard of cystinosis before and were terrified for our daughter’s future. Why did our beautiful baby girl have this disease? How could we still give her the bright future she deserved?
What you do next and how you cope is entirely up to you. You may feel judged by others for your choices but if it feels like something you need to do then do it. Everyone copes differently and no one can tell you how you should deal with this. These are your own challenges and this is your child. Your hurt is deep and only you can feel it, begin to understand it and start to heal it. However, if you turn to something harmful like drugs and/or alcohol, or spiral down into depression, I strongly urge you to seek professional help.
I immersed myself in research and searched for all the information I could online. I felt that the more I understood and knew about cystinosis the better I could care for my daughter and be prepared for future complications. In my research I discovered an awesomely supportive cystinosis community full of families willing to answer questions and give advice. I also found a lot of hope from people committed to fundraising and supporting research towards better treatments and hopefully even a cure one day.
Your road ahead may not be smooth, but when is it ever? Life travels on a calm and steady path for no one. Not everyone will go through what you’re going through but I can guarantee that you are not alone. Whether your child has a rare disease or a common one, there is support out there, from people who have really been there, who really do know how you feel. All your thoughts and all your hopes and fears have a place and a forum where they can be shared and embraced, where others might share their own stories in support. Find these groups, find these people and begin to let some light back in.
The future may seem bleak but there really are silver linings, you just have to look (sometimes really hard) for them. Today my daughter is a bright and happy little girl who is surrounded by love from her family. Though she has many medications to take that keep her body healthy, not all rare diseases have this option and I’m so grateful that cystinosis can be managed.
You can still feel joy and you can still find reasons to smile. You and your child are on this road together and your love for each other can do beautiful and inspiring things. Remember that love, hold on to it tight and face this journey together.
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.