Welcome to my website!

I live in Los Angeles, where I write and blog under the California sun.

Our Children Of The Night Need Us--Let us listen to the Music They Make.

Our Children Of The Night Need Us--Let us listen to the Music They Make.

A friend of mine recently sent me a song. And having somewhat of a spasmodic internet connection all the way up here in North East Pasadena, it took a while for me to hear it. But the timing was super because I was preparing a talk on caring for a child with Narcolepsy and I really wanted to give Mathilda a voice that evening. I wanted her to speak to our audience even though she was already tucked up in bed a few miles away.

This music touched me. Not only because of it's personal relevance but because it's message speaks of what our children need--particularly those who face extraordinary challenges like Narcolepsy. Furthermore I wonder if it's possible to apply the cry of all children who have to deal with  chronic illnesses that makes their lives extra hard.

I've heard it said that music is arguably the highest form of art. That it can communicate a message which would otherwise be difficult to articulate in writing, and equally hard to portray on a canvass or on stage. Often music can move us into a realm that elevates our sensibilities and if that is true, then the video below may help us to hear what our children of the night are saying: That they need us. They need us and others in unique ways. They have a voice which demands to be heard, a message which we as parents cannot afford to miss. Thy are desperate to be understood, accepted and acknowledged. They have the same fears as their peers but perhaps exaggerated because the odds are stacked against them. The symptoms of Narcolepsy give rise to extreme physical limitations which impact directly on their ability to flourish socially, academically and psychologically. They need to feel safe, loved and valued day and night. And this level of reassurance needs to be driven home over and over again.

So they trust us parents to be able to meet  their extraordinary emotional needs, perhaps not understanding that we are fumbling around in the dark, looking for treatment, doctors and answers and utterly desperate to relieve their suffering. I asked Mathilda this week, what she would say to her friends who might be able to come along side her as she navigates growing up with Narcolepsy. And this is what she said (word for word): 1.  "Try to know all about me, that I have Narcolepsy and Cataplexy. It's really hard for me to explain how it feels. You're not even close to knowing what it feels like." 2.  "Please let me nap when we have a play date, but save the game for when I wake up. I can still play with you, I just need a few minutes. Please don't do anything really fun without me because then I will feel really annoyed. Please wait for me to wake up then we can start the game again." Then we talked little about what she needs me and the Professor to do to help her each day and night, what's important right now and what she requires both at home and school going forward. And here's where I interpret a nine-year olds' voice:
1. I need you.
2. I need friends who understand me.

3. I need the pain in my legs to go away. Thank you for rubbing my feet each night.

4. I need not to be too busy. On weekends I would prefer to stay home and take my time to read and play. I like being alone sometimes.

5. I find being over-scheduled really hard. Please don't make me do ballet or swimming lessons. I'm not up to it. It takes all my energy to get dressed and do my homework.

6. I want to be an artist and be the boss of myself. I love Greek myths, and reading, and cats.
7. I know what it feels like to not feel good. I like to help others who feel sad or have pain. And it's OK if your tired, because I know what's it like. It's not good but in a while it will feel better.

Then  several nights ago we had a conversation that I think will stay with me for a very long time. I was tucking her up in bed and kicking the cats out through her bedroom door. She was drowsy but wanted to chat.
"Mumma, I'm so glad you want me." She said. "Why would I not want you?" I replied, somewhat concerned.
"Because I was told about a boy with Down’s Syndrome at school today and his parents didn't want him because he wasn't perfect. So they gave him away and he eventually got adopted. But he wasn't with his Mum or Dad anymore. It made me really sad."
"No one is perfect." I said.
"But I am especially not perfect. I know that, because I have Narcolepsy."
"Oh, but you are sweet girl." I replied.
"How come? Why do you think I'm good enough?"
"Because none of us are perfect. And God made you just right. You are just the right girl for me and Daddy, for our whole family. Just as you are. Having Narcolepsy is part of you but not all of you. And in no way does it make you bad or any less of a person. I realize sometimes you feel bad but if you or Libby or Elliot had been been born with Down’s Syndrome or another condition, you would all have still been perfect for us. Love knows no bounds." I said hoping she would really hear me.
"I'm glad you want me" she said drifting off towards a night of interrupted sleep and medications.
And I was glad she is old enough to articulate some of what it means to live with a chronic illness. At nine this is possible, at three, it wasn't.

So I went back to work, finished the video for our class and thanked God for her life and the place she is in.  I can't say I'm grateful for Narcolepsy, not sure I ever will be but I am grateful for the opportunity to give our children, all children who wrestle with feeling different, a voice. A voice which must be not only heard but acknowledged and supported--even when their trust in us is more than the confidence we have as parents in caring for them. As I said in the lecture, this song isn't only about Mathilda. Feel free to insert the name of the child you know who lives with a chronic condition and at times feels frightened, isolated and unheard. Rightly or wrongly, they have a wonderful trust in us. A trust that our children of the night need to be assured of, so that in turn they are free to make music of their own.

 

 With grateful thanks to Jill Daniels for the song and our children who unknowingly teach us, humble us and despite our failings, need us.

Doubt, Depression and Detachment--A Cost of Parenting a CWN

Doubt, Depression and Detachment--A Cost of Parenting a CWN

All Shall Be Well--Part 3 on Marriages Under Threat.

All Shall Be Well--Part 3 on Marriages Under Threat.