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

All Shall Be Well--Part 3 on Marriages Under Threat.
Speaking on marriage and parenting the chronically ill child–May 2016.

Speaking on marriage and parenting the chronically ill child–May 2016.

Here is the final part of a seminar the Professor and I gave recently to students in SoCal and Arizona. Part 1 looked at the various threats to  marriage when caring for a chronically ill child. Part 2 explored what we have found helpful to offset those threats. To conclude, I end on a positive note: that although our journey had been somewhat challenging, we along with other parents can find hope for their chronically ill child and for one another. Furthermore, it is possible that the strains and stresses of suffering as a consequence can ultimately bring two people to a point of unique togetherness. It is a shared journey, after all. 

So we were kids. July 1993, London.

So we were kids. July 1993, London.

Like most young couples, when we set out on married life over twenty years ago, we really had no idea of what was ahead although I'm sure we thought we did. On the night of our wedding, our biggest concerns were running out of gas on the way to our honeymoon destination in the Cotswolds, and finding a tin opener to open a can of Ambrosia Cream Rice--which was our supper. With the money we had left, we bought toothpaste.

After that, the two of us were preoccupied with finishing up degrees, beginning careers and finding a home that hopefully we would one day fill with children. There was nothing special about us or our marriage and there still isn't, because what followed was a journey that we now share with thousands of  other parents across the globe.

For those of you who might be reading this for the first time, our youngest daughter Mathilda developed Narcolepsy at the age of three in 2010. We were living in Bristol (UK) at the time, the Professor was working the the University there, and I was educating our older two children at home. Liberty was then aged 10, and Elliot aged 8.

Home-schooling pre-Narcolepsy. Elliot, Mathilda, and Liberty in our kitchen in Bristol 2007.

Home-schooling pre-Narcolepsy. Elliot, Mathilda, and Liberty in our kitchen in Bristol 2007.

Within weeks of Mathilda receiving the H1N1 vaccine in the January, she began to display a bizarre array of neurological symptoms. What followed were numerous hospital admissions, further deterioration of her health and a radical transformation of all our lives.

She needed 24-hour care since Narcolepsy is a 24-hour disorder, and it wasn't long before we were struggling to look after her and keep all the other plates spinning.

Years later I realize that parenting a chronically sick child and all that goes with it has been a transformative experience. By that I mean we have had to adapt our lives to meet Mathilda's medical needs and consequently our family life looks very different to what it once was.

Neither the Professor or I saw Narcolepsy coming.

Neither of us ever imagined we would move to LA to secure treatment for Mathilda, change jobs and give up home-educating the kids.

It wasn't that we expected to dodge all the bullets of ill health (in sickness and in health), or breeze through the trials of being  married (for better or worse, richer or poorer), but it's true to say that Narcolepsy has tipped our lives upside down partly because Mathilda was so young when she became sick, and party because Narcolepsy is incredibly disabling, frightening, and isolating.

Even now, the symptoms of Narcolepsy steal time from Mathilda’s day and affect her personality. Showering leaves her exhausted.

Even now, the symptoms of Narcolepsy steal time from Mathilda’s day and affect her personality. Showering leaves her exhausted.

Mathilda has been changed by her condition, and so have the rest of us. We are not the same people we were. This is what I mean by transformative. Consequently our family life and marriage have had to keep up with the many challenges that her condition has brought.

Working through the days and long lonely nights as our daughter searches for sleep has been challenging, heart breaking and taken both of us and our relationship to the very edges of what it means to be human. Posts on social media might may people think otherwise. After all, there aren't many pictures of those moments when we are struggling. They wouldn't get many likes on Facebook or loves on Instagram and certainly wouldn't encourage people which is always my aim.

But it's true to say although Mathilda's journey may sound unique, her story isn't. Neither is ours as a couple. And neither is the possibility that becauseof her suffering (and our own to a lesser extent) we have pulled together and somewhere in all of it flourished as individuals and as a couple. It is not a given that people buckle under the pressure of watching their child suffer despite the statistics of failed marriages suggesting otherwise. Of course, people may pull apart for reasons I mention in part 1, because nothing about suffering guarantees growing closer to each other.

In fact, I have wished over and over that someone, anyone, would take away the suffering Mathilda endures to this day. The Professor's presence and reassurance can't do that, just as I cannot lessen his load. But standing together has made for a special kind of intimacy. It has made the hundreds of horrible nights since 2010 bearable.

In closing, here is a paragraph from the epilogue of my book,Waking Mathilda: I quote a card that was given to us by friends Julie and Matt Canlis back in 2010 when Mathilda was undiagnosed and we were terrified. I have that card tucked away because the words inside were so encouraging. Julie alluded to the fact that spending time with people who are suffering is like being a dwarf amongst giants. And I could say more on that because the perception might be that those who suffer are some how special. But we don't wear halos. We fail, we are flawed and in our frailty stumble through the years trusting that good will come out of it.

In the early days, I clung to the beautiful calligraphy on the front of Julie's card— the well known quote form Julian of Norwich which reminds us “All shall be well, All shall be well, all manner of things shall be well.” This short quote from Waking Mathilda wraps up the 3 parts of blogging on being married whilst caring for a child who has a chronic illness:

Famous quote by Julian of Norwich.

Famous quote by Julian of Norwich.

"When I asked Oliver way back to consider giving up his job to find another, one that would in effect secure specialist care and treatment for Mathilda it was plea I made only once. His burden at the time, loaded and fraught with professional and personal responsibility was tempered by a wrought-iron determination to do the best he could, given the limitations we were working with. That coupled with the philosophy I had been raised with, to never ever give up, even when you are holding onto the ledge of hope by your fingernails provided us with a vision that I believe held our family together. To this day, Oliver still teaches, writes academic books on Philosophical Theology and travels to give papers all over the US. Moreover he is a full time loving carer and wonderful father to our growing children. I’ve since found that side of him both humbling and inspiring. After all, he did something at the time I couldn’t have. Something that has cost him and something I imagine, many others would not have found the resolve to do.      This love of ours, however vulnerable, has been enough to carry me through the darkest nights of our daughter’s brain dysfunction, the peculiar imbalance a sick child throws at a family, and across the Atlantic to the West Coast of America. Then without any remorse, all five of us came up for air—up and out on the other side of suffering.From time to time I take out that card that lies beneath a pile of paperwork in a drawer in the kitchen— as if being here I need reminding: All shall be well, all shall be well, all manner of things shall be well.

 
Mock-up cover art.

Mock-up cover art.

 

With grateful thanks to the Professor and Julie and Matt Canlis and our children who are flourishing because of living with Narcolepsy.

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.

Marriages Under Threat--Part 2. How To Offset The Challenges of Caring for a Chronically Ill Child

Marriages Under Threat--Part 2. How To Offset The Challenges of Caring for a Chronically Ill Child