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

Who Cares for the Carers?

There’s a reason why, during take off you sit through that tedious safely video--the one you've seen dozens of times and fills you with the unimaginable terror of going down somewhere over the Atlantic. The one that says the same thing over and over about the exit door you're nowhere near and slide raft that you really just can't imagine will be of any help cos for the first time in ages you're wearing heels and you've never been confident in inflatables anyway.

All that video does is confirm your dread ... that if you're going down, you're going down. Neither the brown bag or the sweet thought of your destination will help get you through it. And your talkative seven year old certainly won't either. You're the adult here.

As parents we are told in the event of a airborne disaster, to put your own oxygen mask on before assisting your child.

It seems counterintuitive, doesn't it?

It seems completely wrong to me EVERY. TIME. I. FLY.

When I finally came clean to the Professor years back that I wasn’t coping with Mathilda’s deterioration, and that I didn’t really know what a break down was although I was near the edge of an emotional precipice, he replied as follows, "If you go down, we all sink with you." (I've always appreciated his honesty.) And the same applied to him. If his emotional, mental or physical wheels came off, then mine might too. Between us, we were terrified for each other and for our three kids--Libby then 10, Elliot 8, and Mathilda just 3.

At the time, I didn't realize I was in the early stages of grieving. I remember having a chat with Mali Einen at Stanford and her telling me that a diagnosis such as Narcolepsy is a lot to process--that it turns your world upside down and that life as we knew it would never be the same.

I sort of understood what she was saying but was reeling from the reality of it all and existing on a few broken hours sleep at night. I was consumed with caring for a sick little girl, and two healthy older kids, home schooling and getting a meal on the table without dropping tears into the spaghetti.

As parents of CWN we have the every day reality of our child struggling with a chronic condition  and  we have the nights to deal with too. Our little Narcoleptics are often awake and hallucinating, or if they're lucky, taking meds. But either way, we as parents and care-givers are also  awake, often for hours every night of the week.

This is not to say it is worse than what PWN deal with. I have no illusions about that. But it's still hard. It's hard to accept, hard to deal with, even harder to go to bed at night knowing you won't get enough sleep to keep you sweet the next day--that you'll need the patience of Job just to get into the car in the morning with a smile on your face.

I started looking in to this subject recently when asked to present on parenting children with Narcolepsy at the annual Narcolepsy Network conference this weekend in Minneapolis--because it seems to me that we can only really care for our CWN if we care for ourselves too.

Now, I would be the first parent to hold my hand up and say that I'm rubbish at this. That it took me a  very L-O-N-G time to figure it out. That looking after my own needs actually helped my entire family, not just me. Or, more to the point, accepting what the Professor told me, that if I'm in a good place, then they are too. And to be honest, I could only really start to think about self-care once Mathilda was stable on medication and our family was settled here in SoCal. So, in real terms that means it took about three years to find a gym, and get my hair done.

But more recently I stumbled across the following information, and was disappointed that I had to cut it out of my presentation because of needing to deal with more central issues surrounding CWN like schooling and shame. So I thought I'd share it with you here instead.

First up was to accept that I was grieving. But what is that exactly? I knew it was more than weeping and wishing I could rip the clock off the wall and literally turn back time. (Although I have actually visualized myself doing this many times; I have images of myself tearing the hour arm off and everything returning to how it once was.)

Grieving then, is defined as the natural response to loss of someone or something loved.

Our CWN lost 70,000 neurons in the hypothalamus when they developed Narcolepsy and with that I felt I had lost one daughter and gained another. I was relived that it was nothing more serious, but frankly Narcolepsy is heavy enough to mean more than serious damage to their hypocretin levels. It's a family's diagnosis that tips the household upside down.

In researching the process of grieving I found the following seven stages to be helpful, and wished I'd had the wherewithal to think about this earlier.

 The seven stages of Grief:

1. Shock/disbelief
2. Denial
3. Anger
4. Bargaining
5. Guilt
6. Depression
7. Acceptance

I happen to live opposite an amazing psychologist called Cynthia Eriksson who is both a professor and a clinician, and, has from time to time given me a bit of free advice. She does a lot more than that too, like drive our older kids to youth group, and invite us over for numerous pool parties. But recently, over a White Russian, we talked about these seven stages and here's what she said:

  • that there's a degree of overlap between these stages and that the timeline will vary for different individuals;
  • that getting through the stages is a process, not a race and it can take years;
  • that sometimes you rebound and go back a few steps even when you think you're progressing. (That's a bit depressing: I thought I was doing quite well in reaching 6 only to find that I hover periodically around 3.)
  • That many people need professional help in getting from 1-7.

Yikes! It's a lot to think about, but so helpful for us as parents and care-givers.

Then I found myself thinking, what would be helpful to me in getting to and staying at stage 7?

I knew I had got stuck on and off at each stage and gone back and forth on 4, trying to strike a bargain with God about giving me Narcolepsy instead. After all, I've had some of my best years. Mathilda hasn't, so how about doing a swap?

Well, I'm not sure what Cynthia would say; I should probably ask her sometime soon. But here's what I've found helpful:

Make it a priority to...

  • Respite care and support. (We've had nuns and we have an Ally who will come and do meds for us so we can escape for the odd weekend. Find yourself an Ally and a Mali for support or a Nun or someone who loves you enough to be sleep deprived for night or two so you can get some rest instead.)
  • Be kind to yourself. Really. Be VERY kind to yourself. On bad days, cut yourself some slack. After all, Everyone has bad days. And as exhausted parents of CWN, we can have VERY, VERY bad days. Praise yourself for brushing your teeth and don't sweat it that the car hasn't been washed for six months.
  • Celebrate the small triumphs with your CWN: Avoid dwelling on what you CWN is missing, how hard their lives are and what they cannot do. The small things are truly beautiful. Take time to relish in the fact they maybe they can't jump rope without having a degree of  cataplexy, but hey, they CAN jump rope!
  • Turn it round to marveling at what they can do despite the challenges they face. Don't worry about grades or not making swim team. Forget comparing them with other kids because comparison of any kind kills contentment.
  • Give yourself time out and time to grieve and to understand where you are with the seven stages above. Remember that most of us swing back and forth a bit before we find we nearing the 7th stage of acceptance.
  • Counseling. There's no shame in it, even if you're British! Taking care of your mental and emotional health is taking care of your family and your CWN. I've not done this because I have the Professor and the red box, supportive family and great neighbors and friends, and so far that has been enough. But then gain, I wouldn't rule it out. Besides, it's sort of normal and regular here in LA.

I was going to write about marriage and siblings too in the context of caring for ourselves, and may be I will, but for now I'll keep my oxygen mask on and buckle up for the months ahead.

In the meantime, we can celebrate all that we have, all that our CWN are and the privileged place we bizarrely find ourselves in as parents and carers.

Tomorrow is another day, no doubt pregnant and fraught with the unique challenges of sleep deprivation, but I'll try not to stress about that until the morning,

Today is now.

It's what we have. And there's much good in it, much to be thankful for, and absolutely every reason to hope for ourselves and for our children with Narcolepsy.

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