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Willing to Cry With You--Befriending a Parent of a Chronically Ill Child
 
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A few days ago, my dear friend Wendy Evans sent me an email. It struck me because of her refreshing honesty and what she recognized in herself: that whilst she's an incredible parent (I hope she realizes that), she admits that she doesn't really know what it's like to parent a chronically ill child. In my case a nine year old with Narcolepsy and Cataplexy.

"I always think listening to you about Mathilda is more a listening thing - I have nothing of any benefit to say and whenever I try and write something it sounds horribly glib. Somehow in all of that I just hope you know I love you."

Wendy's email was meaningful because there was a recognition that she couldn't fix things. That she couldn't change any of it. Couldn't even pop over for a coffee because she's 6,000 miles away. I left her in England.

 
 

Her friendship has been more valuable than I can put into words. Years ago, she looked after Liberty and Elliot on the occasions when their sister was an inpatient at the Bristol Children's Hospital (BCH).  She fed them, loved them and taught them how to de-stone hundreds of her neighbors plums. She slotted our older two into her military home-school routine. Mondays was weetabix, Tuesdays was cornflakes, Wednesdays, porridge. Fridays (and birthdays) was free choice by which time the children were positively ecstatic--except there were no coco-pops and a day's worth of studying ahead.

Then, on my return from the overflowing wards of sick children, she listened while I ranted, and held me sobbing and pleading for things to revert back to how they were.

Before illness.

Before a diagnosis and before the grim realization that life for us and our three year old Narcoleptic would never be the same.

Wendy heard the worst of my fears and loved my declining child despite how Narcolepsy caused a change in her personality and despite my unravelling. She and a handful of friends could pull that off and still years later, make me laugh.

When a child becomes chronically ill, it's hard on relationships both in and outside the home. Not everyone has the tools to identify with the new thing that life has thrown at the whole family. Some offer platitudes and are great in the short term. And there's a place for that. But it's hard when a child "doesn't get better."  Parents of the chronically ill child become pre-occupied with trying to figure out how to make it work and get through the next hour, because there is no opting out, no quick fix.

 
 

Here's what I've learned over the past six years:

 

  • We have had to develop another set of parenting skills. Sometimes referred to as "extreme" or "ultimate parenting." We are now figuring out all the normal issues with raising children (in my case teens) but also some entirely unique strategies, for which there are few manuals. Our chronically ill children are often poorly behaved and have internal struggles that few of their classmates can understand. We have to step it up at 3 am to explain why they are afflicted whilst calming our own fears about their future. It's a whole new ball game and even six years in to all this,  I still feel like a novice.
  • Our days are spent fighting insurance over prescription drugs, trips to the doctor and negotiations at school with teachers. Not because our kid is in trouble, but because they have trouble just hanging in there. For CWN provisions for emergency naps have to be made everywhere they go. Several days ago I took the kids to the Queen Mary down in Long Beach. Like every trip, my focus is not just on getting through the ticket line, or wondering if I packed enough snacks for Elliot, but finding out in an advance where Mathilda could sleep should she suddenly need to shut down. Even something as simple as a playdate has to be arranged around meds, naps and optimal wake periods.

 

  • Our nights are spent largely awake. Its' not unlike having a newborn except there's no hope they'll grow out of it. Extreme and prolonged sleep deprivation messes with our health, emotions and perspective on life. On one hand, this is possibly the greatest cost to us as a caregivers (I don't open emails on well meaning friends who send me links on the consequences of sleep deprivation)--On the other, it gives the Professor and me a tiny insight into what it feels like to suffer with Narcolepsy; something for which I am grateful.
  • We have a hard time planning. Because our CWN fall asleep at inauspicious moments there's almost no accounting for when we might run late on account of our chronically tired child falling asleep (EDS). So when we turn up 35 mins after the party started, or don't make it at all, it's not's because we don't want to be there. Most likely it's because every hour is unpredictable.
  •  We need to stay connected. Silence is interpreted as a direct judgment. When people withdraw for whatever reason, the vacuum can leave us feeling isolated and wondering if we've done something wrong. I've often found myself being accommodating when someone says something a bit off the mark. It's actually preferable to silence. 
  • We really want to hear about those around us too. Being a parent to a chronically ill child does not in any way belittle the day-to-day struggles our friends go through, or switch us off from their world. It's not"my life is worse than yours so quit moaning!" I hope it's true to say that we get it's different and we might not have our usual capacity, but that we are grateful for a friendship that runs both ways.
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According to the Center for Disease Control and Prevention, 15% of parents in the USA care for a chronically ill child. That's a LOT of people. And a lot more in terms of friends of Carers. It would seem that Mathilda's story is experienced and repeated the world over--as is mine.

I've had the single privilege of many sweet friendships along the way and am deeply grateful for each and every one of them. I'll probably never really be able to communicate just how important the timing of their support has been just as I hope they will realize that in encouraging us as parents of a chronically ill child, they have not only supported one person, but a whole family.

With Grateful thanks to my friends. Old and new, you know who you are: Ally, Amanda, Bonnie, Bridget, Calise, Christina, Cynthia, Jenny, Joy, Julie, Kendall, Kim, Mali, Mary, Nicole, Sam, Tanya, Virginia, Wendy E and Wendy Y-- " Somehow in all of this I just hope you know I love you." 

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