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Siblings Celebrated—A Reflection on the Wider Cost of Chronic Illness

Siblings Celebrated—A Reflection on the Wider Cost of Chronic Illness

Five years ago Narcolepsy did more than destroy 70,000 neurons in our daughter's three year old brain. It moved in to our home and took it's place right there, between all five of us--like an unwanted and uninvited house guest.

Who never left.

 And when chronic illness hits a family, and the parents attention is unavoidably diverted towards the sick child, the siblings get pushed to the sidelines. And because something like narcolepsy never lets go, the family balance is forever tipped.

 
Liberty and Elliot, 2014.
Liberty and Elliot, 2014.
 

I remember telling my friend Wendy in the early months that Narcolepsy is a family's diagnosis--because all the while I was grieving for Mathilda, I was grieving for Libby and Elliot too. I was only too aware of the impact Mathilda's illness was having on her siblings--Liberty (then 10), and Elliot (then 8). No one in the family was untouched by it and there was little anyone could do to negate the effect Mathilda's illness had on her siblings.

 
Pre Narcolepsy and there's no divide between siblings and friends--it's all carefree fun.
Pre Narcolepsy and there's no divide between siblings and friends--it's all carefree fun.
 

Their home-education went out the window (I was no longer able to teach them in the way I had done for eight years previously) and worst of all, I had neither the time or the energy to do the things we used to do, like read aloud, take them for hikes, or brush Libby's hair. Our goals shifted from covering Latin 1 to getting through every 15 minute interval without unraveling. It was that sudden and that dramatic.

Their time was taken up with hospital stays, sudden stays at friends' houses, and visits by grandparents which meant they were well aware that their previously healthy sister, was ill--even though we tried to keep the worst of it from them.

In Bristol, 2009. Marshmallow molecules the home school way, a few months before Mathilda became sick. From Left to right: Elliot, Heather-Rose, Hannah-Jane, and Liberty. Our kitchen was our classroom too. Hannah is now 14 and about to sit her chemistry GCSE. Go Hannah-Jane!

In Bristol, 2009. Marshmallow molecules the home school way, a few months before Mathilda became sick. From Left to right: Elliot, Heather-Rose, Hannah-Jane, and Liberty. Our kitchen was our classroom too. Hannah is now 14 and about to sit her chemistry GCSE. Go Hannah-Jane!

DSC_0982
DSC_0982

Siblings feel it all because they see it all, they have no way out.

I'm ashamed to admit that at one point I asked Liberty if she thought I was making it all up, like I was going nuts or something. I was standing by the microwave at the time, simultaneously crying and feeling guilty that I could ask a ten year old if she thought her Mum was losing it--that I couldn't re-heat coffee without falling apart.

"No Mum." She answered quietly, her hand on my back. "You're not making it up. Mathilda is sick. It's just that the doctors don't know what's wrong with her."

I trusted her more than I did any of the professionals we had seen that year. Perhaps I wasn't going mad after all. I also made a mental decision to never put her under that kind of pressure again.

I reassured Libby with the thought that if it were her or Elliot in hospital, I would cry the same amount of tears.

Naturally, I would have.

The same amount; and at the time, it was all I could give her.

As the months drew out, Liberty and Elliot became withdrawn. They played alone together for hours undisturbed (thank God for play-mobil and good habits). They never complained. Perhaps they should have thrown a hissy fit, hurled their food across the room, demanded a new family ... but they never did.

They understood as I'm sure other children with similar burdens do, that the slightest request on their part might have been the thing that tipped the balance even further in the wrong direction. My guess is that when crisis prevails, the siblings on the sidelines attempt to steady the sinking boat. They do that by keeping the peace, laying low, plugging the gaps.

 
When Mathilda became too tired to play, Liberty and Elliot changed the game. Their care brings a smile to an otherwise tired face. It also brings a smile to their faces.
When Mathilda became too tired to play, Liberty and Elliot changed the game. Their care brings a smile to an otherwise tired face. It also brings a smile to their faces.
 

One of the things that stunned me the most was how adaptable and accepting the were. Far more malleable than the Professor and me. They sort of rolled with it, outwardly at least. Whilst I kicked against every new symptom, they developed a quiet acceptance, a rhythm that naturally altered with each changing day. And they did that on their own. It wasn't as if we had some master plan or the wherewithal to implement sophisticated strategies. I couldn't suddenly scrub up on raising siblings when their world got turned upside down. Do such manuals even exist?

Arriving in Los Angeles four years ago, they spent the first week with friends Nicole and Darian whist the Professor and I drove Mathilda up the I-5 to Palo Alto, and Professor Mignot's office at Stanford.

 
5 days in to life here the Lockett family provide our older two with a sense of centering that steadies what was going on inside them. Maddie treats Libby like a long lost cousin.

5 days in to life here the Lockett family provide our older two with a sense of centering that steadies what was going on inside them. Maddie treats Libby like a long lost cousin.

 

We were nervous.

Libby says she was terrified, despite Nicole's motherly touch and endless hours of fun in their pool.

Eliiot was bewildered: the five of us were separated and scared.

Over the next year, as Mathilda's health began to stabilize and we started looking for place of our own, their sweet voices re-emerged. I'm glad they did, although it's never easy hearing how your kids have struggled to accommodate a new situation.

One thing that hit home was Elliot's entrance essay for starting school. He'd never been in a classroom before, but moving to California necessitated lots of changes; starting the fourth grade was one of them. On an entrance examination they were questioned about a significant life event. Libby had written about playing violin at the Disney hall in downtown LA, an achievement for which any 12 year old should be proud.

On the other hand, Elliot's biggie took my breath away. In 10 year old handwriting he wrote the following:

Elliot's candid entrance paper to St. Monica Academy School.
Elliot's candid entrance paper to St. Monica Academy School.

I was pulled up short when their head teacher showed me that:

happy that he had could articulate himself honestly (and his home-schooled handwriting was legible); miserable that we couldn't shield him from any of it.

Elliot summed up how is to be a child that navigates the frightening corridors of disruption, is flexible and caring beyond what is reasonably expected of him, and knows what it is to be attuned to the needs of every family member. To this day he is a sensitive soul.

 
Elliot attended Mathilda's last appointment at Stanford. Always good to take book with you!
Elliot attended Mathilda's last appointment at Stanford. Always good to take book with you!
 

Liberty has always been protective towards Mathilda, watching for her floppy moments but also encouraging her to do things for herself.

 
From the outset she has anticipated when Mathilda needs supporting due to Excessive Daytime Sleepiness or cataplexy.
From the outset she has anticipated when Mathilda needs supporting due to Excessive Daytime Sleepiness or cataplexy.
 

She is also committed to educating people about Narcolepsy when they ask her about her t-shirt!

 
At 15, Libby is often surprised at peoples questions and mis-perceptions about Narcolepsy. Thanks to Julie Flygare for the t-shirt!

At 15, Libby is often surprised at peoples questions and mis-perceptions about Narcolepsy. Thanks to Julie Flygare for the t-shirt!

 

Over time the older two children have settled into life here, have a great bunch of friends, and are plugged in to a fabulous youth group. Elliot plays golf and swims. Libby still plays violin and is a lifeguard at our local pool. They are both resilient, charming, and super company, and remain very close, perhaps as a result of being a team for so long.

So, because I can write anything I like on here before pushing the "publish" button, the Professor and I take our respective hats off to these two terrific teens.

To the ever so gentle Liberty Alice, talented, kind, and patient beyond her years, and to Elliot Anslem--our sunshine--the guy who keeps makes us all laugh:

we are grateful for your patience and care for Mathilda and your two tired parents; for your sensitivity and maturity; and much, much more.

We love you two crazy kids and are proud of you!

Indeed, we are very, very proud of you.

The Gift of an Early Diagnosis of Narcolepsy

The Gift of an Early Diagnosis of Narcolepsy

Psychosocial Impact of Narcolepsy on CWN and Parents—Part 2

Psychosocial Impact of Narcolepsy on CWN and Parents—Part 2