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"I Feel At Home Here" -- The Narcolepsy Network Conference 2016

In Oct 2015 I travelled alone to MN for the first time. The Narcolepsy Network (NN) had awarded me the patient awareness prize and I had the privilege of speaking about raising a CWN and leading another session on writing. When I returned home with my humble glass trophy, all three children said it looked like an ornament and suggested it's rightful place was on the Christmas tree.

Our little brunch date at Disney Springs.

Our little brunch date at Disney Springs.

In all truth my first NN conference was overwhelming. I wasn't sure what to expect but seeing 400 or so PWN left me reeling. Some were on treatment but many of the children there were not. My mind constantly cast back to my family who at that point were spread over several continents. Mathilda was in SoCal with baby sitters oblivious to the other children and their parents that I was eating breakfast with. If I had taken her, she would've been the youngest CWN there.

So it was with some trepidation that we both travelled to Florida a couple of weeks back--Mathilda's first NN conference. This time, it was an entirely different experience. I explained that she would meet other CWN, do art and craft, swim in the hotel pool and perhaps do something where it was just the two of us--what Mathilda affectionately calls "Mummy and me time."

At the water park and the only Brits who sought shade.

At the water park and the only Brits who sought shade.

Knowing that I would need to pace her  we went a day early, checked in to a luxurious hotel suite and hit the Typhoon Lagoon water park, which ironically was full of Brits the color of Lobsters. Florida it seems is an ideal destination for the English at half term!

Then the conference started with a bang on the Friday evening. Because this year was based in Disney World, the conference was naturally geared towards children. There were the glossy princess photo ops, face painting and a balloonist who could make anything. More than that, there were  many pre-teens who like Mathilda had Narcolepsy and who were desperate to connect with other people who "got it".

And so I watched my 10 year old run off with my phone, take photos and ask to go swimming at 11pm with her new friends. Several of them had Cataplexy in the pool, and laughed all the more about it. Their jaw drooped enough to let in water-- all of them used to feeling joy and at the same time staving off moderated levels of paralysis. Seeing the other children display the same symptoms was in a strange way comforting. She is not alone. And neither am I in worrying about her drowning because she's having fun .

Mathilda and her friend who also has Narcolepsy both fell asleep during the key note address.

Mathilda and her friend who also has Narcolepsy both fell asleep during the key note address.

The plenary speaker, Dr. Judith Owens did a great job at focusing on the challenges of treating such young children. And whilst we parents found it engaging, our CWN thought it technical. And so the inevitable happened. They  dropped off.

Nicole Jeray is a PWN and professional golfer and a positive influence on CWN.

Nicole Jeray is a PWN and professional golfer and a positive influence on CWN.

There were so many break out sessions that were relevant for adults and children that we found ourselves attending different seminars only to meet up and share what we had learned and who we had listened to. One of the highlights for Mathilda was making posters for the well known Nicole Jeray, a professional golfer who is a PWN and was able to connect with her young fans.

These treasures make me laugh, help me understand Narcolepsy and give me hope. From L-R, Mali, Julea , Moi and Katrina.

These treasures make me laugh, help me understand Narcolepsy and give me hope. From L-R, Mali, Julea , Moi and Katrina.

Perhaps a highlight was the evening out for the children who went for supper in Disney Springs without the parents. I took the opportunity to meet with friends and relax on our patio by the pool with Pizza and a bottle of wine. We laughed so much that I found myself wishing I could see them much more often.

What I love about the Narcolepsy Network conference is not only the relevant break out sessions but the opportunity to connect with other PWN.

For Mathilda this is very significant. By the second day she declared that she "felt at home here."  These are the people who understand her on a fundamental level. They experience the same symptoms, they understand the challenges and difficulties and by spending time with together, they validate her as a CWN and as a person who has everything to hope for despite the challenges that she faces.

Since returning home I have seen Mathilda reign in her mood swings, articulate what she's feelings and walk an inch taller.  Perhaps it was having  elaborate "mummy and me time." Although I bet it was so much more than that. Attending the NN validated her as a person with Narcolepsy, removed the idea that she is alone in fighting extreme exhaustion every day and provided her with a community who "get it." For me, I delighted in seeing her and the other children connect. These are her people. and they are mine too.

Mathilda with Krista and her service dog Buddy.

Mathilda with Krista and her service dog Buddy.

What price do you put on that?

The cost of the flight? The hotel room? Sure, I have to pay off the credit card bill but I would willingly do that for the next six months if after seven years of being alone with her condition, finally meant she could find herself validated and unashamedly a CWN who now has other friends with the same condition.

So, if you have ever wondered about going to a conference like NN, one that focuses on a condition your family deals with alone 24 hours a day, here's a brief list of the benefits:

  1. You learn more about the condition and keep up to date with relevant issues.
  2. You meet lots of people who understand your unique challenges without having to explain them.
  3. You get a mini vacation.
  4. You come away encouraged, validated and inspired.
  5. You make new friends and connect with old.
  6. You pick up on small details that improve your quality of life in a big way.
  7. You gain a refreshing  perspective on life as you realize you are not alone.
  8. All your symptoms and struggles are normalized albeit for a few days
  9. You are not the only one who isn't able to function much before 9 am. Everyone is groggy in the morning having been up during the night either taking or administering meds.
  10. You get to meet inspiring people who are living fully despite their physical limitations which leaves you with a strong sense of hope.

If you've ever deliberated over attending a conference that is specifically geared toward you child with special needs...I say go for it!

The benefits outweigh the costs!

With grateful thanks to Narcolespy Network especially Melissa Paterson and Dr. Owens, Nicole Jeray, Mali Einen, Julea Steiner, and all those Parents, CWN adults with Narcolepsy who attended my sessions. 

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