• Shannon Burkoth

“I know I’m Different From Other Kids” - A Conversation With My Daughter. - Guest Post by Claire Cri

I met Claire and her daughter Mathilda at the Narcolepsy Network conference this past October in Orlando, FL. We sat together for breakfast one morning. Claire's daughter Mathilda is ten years old and she has Narcolepsy and Cataplexy, just like me. It is interesting to see the narcolepsy journey from both a child's and parent's perspective. You can read her blog anytime at clairecrisp.com. Claire is also a Rock Star advocate for her daughter and the narcolepsy community...Thankyou Claire for all you do!

“I know I’m Different From Other Kids”–A Conversation With My Daughter

October 12, 2016 clara.crisp.40@gmail.com

It was one of those small moments, sitting in our lounge with a cup of tea and a quiet few minutes together. Mathilda had endured a rough day at school and I was grateful to have the time to listen to her. For those of you who don’t know, Mathilda, our youngest daughter developed Narcolepsy and Cataplexy at the age of three, just weeks after the 2010 H1N1 vaccine back in 2010.

Her voice, one that she shares with thousands of other CWN gives us great insight into what these young souls are dealing with every 24-hours. My hope is that we can learn from them. Not just how to be better parents but better informed about the condition and better equipped to care for all children like her.

Here’s what she said about the various symptoms of Narcolepsy that she deals with:

“I know that I am different from other kids. When friends read or know about Narcolepsy it helps a lot, like my teacher Miss Miranda and Eliana. Kindness is very important. It helps when we have a lot in common like Percy Jackson and Calico Critters. Eliana is my friend because she takes me to the office when I need help and Miss Miranda always asks if I’m OK.

Parents and friends need to understand that when I wake up from a nap, I feel really terrible. You need to give me space to wake up slowly, have time in my bed and then read and play. Putting pressure on me to do anything doesn’t help.

Magnusson keeps M company not just when she’s awake.

Having the cat sleep with me makes me fell less alone.

I’m like little chick coming out of it’s egg and having a bad day.

My personality is influenced by my dream world and helps me get to sleep. When I think about nice things it helps me get to sleep and feel at home. So I need time to think of all the characters in my stories and be alone. Sometimes I wake up and can’t move which is frightening. It helps to have my parents bedroom close by because when I have small bits and pieces of hallucinations my parents make me feel less alone and less scared.

I am worried about wolves. My imagination gets the better of me. I hear things and they creep out to get me. But I am used to my parents routine and wake up and they help me stop it. It helps a lot to tell myself stories so I can expand my dream world in a good way. I think about my own characters who are always super heroes. Being the storyteller is the best thing because I can control what I see and think about. By my bed I have lots of paper that I write down names of characters and draw maps. But mostly I just tell my cool stories where the goodies always win.

The books I read impact on my dream life. So do movies. Guardians of the Galaxy isn’t frightening but other movies like suicide squad I wouldn’t see because it would give me nightmares.

Friends make M laugh. In order to stave off Cataplexy she locks her jaw and squeezes her hands.

I only get cataplexy sometimes. It’s hard because when someone makes me laugh which is very often, there is nothing I can do about it apart from stumble and hold onto something. It helps to stretch my jaw and then all then excitement goes away.

During the night I am cranky for my first dose (of Xyrem). But I am able to come out of my shell. It helps if you don’t put pressure on me to talk. Imagine having the worst nightmare then times it by 10. Hallucinations are worse than anything ever. It’s terrifying. Last night I had a dream about an evil lady torturing me. Right now I feel OK but then last night, it was real. I try really hard not to keep going with the nightmare but I can’t stop it. The things I hear creep out on me. I want them to go away and never come back.”

As parent of children who suffers with Narcolepsy I also want it to go away and never come back. I do not really know what the imaginary evil woman who torments her looks like or the effort that is required to keep her Cataplexy under control whenever she’s happy. Yet rather than lose myself in wishful thinking or buckling under the sorrow, my job like many parents who face the unique pressures of raising a child like Mathilda is to listen, understand, and reassure them that they are not alone. And that being different is what makes them special.

This photo shows how happy Mathilda was at her brother’s graduation. It also shows Cataplexy controlled by medication.

With grateful thanks to Miss Miranda (Mathilda’s 5th Grade teacher) and all the Eliana’s out there. And not least to the Professor who partners with me night after night helps our daughter deal with her medications and hallucinations.

Photo of Claire Crisp.

#narcolepsy #ChildwithNarcolepsy #CWN #NarcolepsyNetwork #ClaireCrisp #RareDisease #Advocate #ParentAdvocate #CareGivers

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