How My Daughter’s Rare Disease Taught Me to Care for Myself

ab4From the moment I learned I was pregnant I wanted to do everything in my power to protect my child. I remember even doubting if my body could do it properly, let alone what would happen when she came out! Luckily once my daughter was born and I adjusted to motherhood that fear subsided a bit. So when she was diagnosed with cystinosis at 15 months old, my world came apart. I could barely breath through the tears. I was in shock and disbelief. How could this be happening? This was my first child, my perfect, beautiful baby girl, the love of my life (sorry Dave). How could she possibly have a life-long disease?

Dave and I had done this to her with our faulty genes. We were both unknown carriers and she’d had a one in four chance of getting one mutated gene from each of us to develop cystinosis. It’s hard to explain the feelings of incredulity and guilt I experienced. On the one hand we’d had no idea this was even a possibility so really why should I feel guilty, but on the other we were supposed to be protecting her and instead we’d given her a disease that will probably cause the most damage in her life. How could that not tear at my heart?

How could I not feel responsible?

It was awful having to hold and clean her up when she threw up every morning from her new medications. It was awful having to pin her down as she thrashed and I tried to administer her eye drops twice a day. And it was awful when we stood by her side as they inserted a feeding tube down her nose to her stomach. I have never experienced that kind of pain before. I wanted so badly to take her place and her pain away. I felt inadequate and like I’d failed her. It was the most difficult time of my life, trying to keep it together and be strong for her.

So I just focused on her. She was my priority, she was the important one. Anything I did just for me was easily pushed aside and to be honest I really didn’t think or care about what happened to me. I remember thinking more than once “F*$@ you, Life, if you’re gonna give my daughter a rare disease with no cure than what’s the point.” I stopped being active, ate a lot of junk whenever I had to eat and quickly went from a size 12 to 16. All that mattered was my daughter’s health and happiness, I barely even left any love or understanding for Dave. The funny thing is I even knew better. Right at the beginning Dave and I talked about the importance of us modelling a healthy lifestyle for her, and taking care of ourselves so we would always be there for her. But as we struggled more and more in the transition I quickly stopped caring about that.ab7

In the back of my mind though I knew that eventually I’d have to look after myself, too. It’s written in every caregiver guide and is the first piece of advice people who have been there tell you. I would add this: when you’re ready. In the beginning it was so difficult getting everything together that I just couldn’t bare to take any time away from my daughter when I could be with her. Over time though, as things have settled down, I’ve been able to slowly get back to me. I started a blog to write about our journey and keep loved ones updated and it’s also been very therapeutic for me to get my thoughts and feelings out. It also makes me feel good to think that I might be helping others who have been diagnosed as well.

I joined all the cystinosis groups I could find on Facebook (even the French and Brazilian ones!) so that I could connect with others in the same position and also learn from their experiences. Due to the rareness of cystinosis the patients and caregivers are often more knowledgeable than some of the doctors and they have been a great resource. It’s also so nice to have a place where people understand what you’re going through and have better advice to give than the standard “hang in there, it’ll get better.” I highly recommend support groups to anyone going through any difficult time. You are not alone and finding that support will make a huge difference!ab6_sq

And finally over a year and a half after her diagnosis I am trying to be healthy again. Not with any big expectations, just with the idea that I need to get back on track. I always thought that to get in shape you had to join a gym or start some big exercise program but I’ve been inspired by a fellow cystinosis mama who’s been doing it on her own with at home workouts. So almost every day when my daughter is napping and my newborn son is fed and content I throw on a quick YouTube beginner workout video. Nothing crazy, just 10-30 minutes, so I don’t burn out. Then I follow it up with something I enjoy, which for me is a yoga video. And there are tons of free videos for all sorts of exercise routines and levels just waiting to be discovered. The key for me was finally getting to a place where I wanted to do it. If you don’t have the proper motivation you probably won’t enjoy it or stick with it, but I can promise you the benefits are amazing. I feel happier, stronger and have more energy. It’s helping me to be a more attentive and loving mother and wife (or at least feel like I am).

And finally, inspired by this very Good Mother Project I’ve added in daily positive affirmations. Simple things like I am a good mother, I am beautiful and I am doing what’s best for my children, have really helped build my self-love and sense of worth. The time I’m taking for myself is helping me be the best that I can be and helping me actually believe it.

Everyone deserves to look after themselves. If you’ve been putting yourself on the back burner, maybe now is the time for a little self love.

Or whenever you’re ready, of course.



Amanda is a mother to two beautiful children and her family resides in New Westminster, British Columbia. When her oldest child was diagnosed with the rare disease cystinosis she started a blog to chronicle their story and help other families come to terms with their diagnosis and show them there will still be lots of joy and love ahead. You can follow their story at


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One thought on “How My Daughter’s Rare Disease Taught Me to Care for Myself

  1. Jennifer | The Deliberate Mom Reply

    What a beautiful, honest, and raw post.

    I can’t imagine the feelings and emotions but you so eloquently described how this transition affected you.

    Thank you for sharing your story. I’m certain it will uplift and inspire other moms.

    Wishing you a lovely weekend.

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