Live with Rett – a honest, from the heart account.

Many thanks to Mel Lancaster, USA, for sharing her very honest thoughts on the impact of Rett syndrome for all the family.

‘Someone asked me recently, “What is the meaning of all this suffering?” Make no mistake, Rett syndrome is a lot about suffering. Labour is a suffering that has meaning – Life. A woman’s body and heart are meant to be strong for that, to love the one being that has wracked their body with pain. Labour seems like nothing compared to hearing the words, “Your child has Rett syndrome.”

I’ve lived in the world of Rett syndrome for 28 years, I’ve watched all my children suffer, Katelin certainly but her siblings as well. So, what is the meaning? Is there ever meaning to a life of suffering? My children begged me, at times, to put their sister in a home. But I didn’t want to teach them that because a child is difficult to raise you can just give them away. Instead, they learned they were not as important. There is so much suffering for us as well, the parents and loved ones. What can the meaning of this be? We struggle to survive in a world gone mad at times. Some of us are beaten, assaulted by our own children; too many lose their babies and grief assaults them with no timetable of ending. I am not perfect. There are times when I would gladly have not had to bear this burden, but I cannot change the hand dealt to us by chance. Caregiving is endless chores, isolation, undulating grief, at times despair, and a weariness that doesn’t leave you. There were days I was certain I could never get through, months of telling myself, “I can’t do this.” Days turned into months, months into years; at some point I had to admit that I could, and I was getting through it- trudging through the mud and muck of seizures, other children who needed me, paperwork, losing a job I loved, divorce (a blessing not in disguise). I’m not out on the other side yet, but 28 years is a long time and I’ve made my peace with it.

Is there meaning behind Katelin’s suffering? For those who are believers of a higher Being, they may gain comfort from knowing that they were chosen as their child’s parent; their child has a purpose on Earth- to teach compassion, educate the unkind, to make people better human beings. I don’t have such thoughts as those. I believe that Nature in all its intricate vastness, its infinite possibilities, can’t always get it right. I haven’t ever questioned, “why me?”, “why her” as I would not give it to another child instead. So, the meaning behind her suffering-none, but purpose to her living-there most certainly is.

Her purpose is the same as any living soul- to live, to enrich the lives of those around her and to be enriched by them; to learn, in any way she can, about the marvelous world she lives in; to participate in adventure and laughter. To me, it is our children’s lives that have the “meaning”, not the suffering.  As the person responsible for giving Katelin every experience I can, I have the insurmountable joy of rediscovering… everything.

Not a day goes by that I don’t marvel at a butterfly, a spiderweb, or the aroma or stink of a flower because I make a point to have her experience it. During the Pandemic, I homeschooled her. I learned so much myself. I never knew the sun made a recordable sound. In the vacuum of Space. We listened to it. Incredible. And to think I might have missed this if it weren’t for Katelin. I got to watch the amazement in her eyes when our volcano model really worked. Together, we have climbed mountains, seen Yellowstone and Mount Rushmore and a thousand natural wonders on our shared journey on this Earth.

I haven’t always been the best mum I could be, there were many times I failed Katelin, my other children and even myself; so, what I think the meaning of it all is this- Nature is neutral; suffering is a Human condition- just try to be a good human being. Would I have chosen this life? Not a chance. But it’s mine and it’s Katelin’s. If there is one positive thing I can say, it would be – we’re lucky.

We don’t take a single heartbeat or breath for granted, not one sunrise, nor butterfly, nor rainbow: not one word, one step, one kiss. Life is full of wonders if you open your eyes and heart. That is what Katelin made me do; that is a life full of purpose and meaning.  

Melinda Lancaster Mum to Debbie, Katelin and Sean

Live with Rett – a honest, from the heart account.
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