The problem: very few natural opportunities to blog.
The plan: write what I can in the time I have available today –
Tom and I are currently in Kuala Lumpur, Malaysia. We are here because Tom is leading the music at every session of the Alpha Emerging Leaders’ Retreat. I am here to accompany him. We have some free time now. He has gone off to see the sights, I spent an hour and a half sprawled out on the king-sized bed with the curtains closed. I have drunk too much coffee and am so out of practice I was unable to nap, so I just closed my eyes and enjoyed the peace for 90mins. What a treat!
I want to take a few minutes to process what has been happening since last year, when we were last in Malaysia for this same retreat, version 2012.
Highlights: I completed my Masters degree and Tom released his album and it went to no.1 on HK’s iTunes chart. I also got given a job as a part time lecturer at City U, but…
Low point: A couple weeks into teaching at City U my son Dylan got seriously sick. Dylan has been a tricky little guy since birth. He is not a big feeder or eater, and is not inclined towards sleep. Ever. I spent his first year of life trying to figure him out, and failing miserably. I just kept telling myself it would change with time, and there always seemed a reasonable, if not unfortunate explanation for his sleeplessness – teething, milestones, separation anxiety, needs a comfort item, crack of light coming through the curtain, too dark, too hot, too cold, wind, colic, lactose intolerance, gluten intolerance… the list grew longer faster than I could attempt to address each item.
One day in October our Helper Eden had gone to the shops, and I was home alone with the kids as they napped, or tried to. I was reading a story to Layla and Dylan was crying down. Only, Dylan never cries down, he cries up. His cry is never half-hearted. He is fully committed to his cry. If I were to download that baby’s cry interpreting app for the iPhone, I’m pretty sure it would tell me that Dylan’s cry means: HELP ME WOMAN, I AM ABOUT TO DIE, YOU ARE A TERRIBLE MOTHER, WHY HAVEN’T YOU FIXED THIS PROBLEM YET? I WILL BE DEAD IN THE NEXT FIVE MINUTES IF YOU DON’T COME AND GET ME RIGHT NOW.
Layla had somehow fallen asleep so I went to him. I picked him up and he continued to cry, but the cry got quieter, then he started choking and then his lips went blue and then his face went blue. I called my neighbour and asked her to come down and sit Layla until Eden returned. I grabbed my bag and ran out the door. Once I was half way up the stairs Dylan burped, and then he relaxed, but he still sounded all wrong so I took him to the paediatrician.
From that point we entered a season of visiting doctors intensively. between 1-4 appointments a week. Dylan had a bad infection in his lungs. He needed more than 12 medications a day to help him fight it without hospitalisation. We bought a nebulizer that he had to have twice a day, a vaporiser and a very expensive air purifier. We switched onto a hypoallergenic diet. I moved into the spare room so I could hold him most the night. The doctors agreed that it was the best way to go because he was at risk of vomiting and choking in the night. Eventually I made the decision not to sign on for a second semester of teaching – I was cancelling classes to be with Dylan and had no idea when he would recover. More than one of Dylan’s doctors used the phrase “I don’t want to frighten you, but…” and more than three told me very soberly that “he is a very sick little boy.”
From October 2012 to today it has been a slow and painful climb out of the ‘critical’ zone. The weird thing is that he is a very happy and calm little guy for most the daylight hours. During the night he turns into something else, but we fumble along regardless. What else can you do? You still have to get up in the morning and get on with the day.
Everyone knows a rough night leaves you feeling, well, rough. A whole week of them feels somewhat unjust. By the time a week becomes a month, and then a year, you can no longer remember what not feeling rough feels like. A new and highly undesirable identity has formed as the you that you used to be fades into the distance, taking with it whatever it was you used to think was important. This isn’t totally a bad thing. I believe there is value to be found in all the hooha but it will require a rested mind to unearth all that stuff. A few months ago I finally recognised another byproduct of the challenge I’m facing, and this one was totally unexpected. I knew I had been feeling something weird, but couldn’t quite place it, and then it dawned on me: Shame.
I was walking around life feeling deeply ashamed of what was happening to our family. I was never angry at Dylan. That was one decision I have been inflexible on from the start. It is not his fault. I was pretty upset with myself for not being able to comfort him, or fix him, or continue to achieve everything I wanted, and I was regularly mean to Tom for not being able to fix the situation either, or to read my mind to find out how and when to say exactly the right thing, and I was mad at Layla for also needing me despite the fact I hadn’t slept, and I was very disappointed at God for not answering my desperate prayers the way I wanted them answered. As for what Dylan himself had to suffer, don’t even get me started on that. There were lots of unpleasant feelings present that I recognised and could, on some level, understand, but I really didn’t expect shame to be one of them. I think it was linked to the secrecy of the whole situation – not that we were hiding it (I’ve probably tweeted about it at annoying frequency), but just that it has happened behind closed doors where no one else can see how bad it gets, or have firsthand insight into why I’m no longer sticking to the plan. I find it interesting. I don’t really have any further insights on this point though.
At the beginning of this month Dylan’s ENT specialist said Obstructive Sleep Apnea was the main problem we had to tackle, so he had surgery to remove his tonsils and adenoids. Putting an under-two-year-old in for an operation was not an easy decision, but the truth was that the whole household was at a point of despair, and the doctors said if Dylan doesn’t start sleeping properly his development will be affected.
The three-day hospital stay was difficult but his physical recovery was perfect. Tom and I can hear that his breathing now sounds normal. He still isn’t sleeping though. He doesn’t know how. He has had to wake himself up to breath since birth, so it’s going to take some time to give him the skill and gift of sleep.
Sleep is a crazy thing. It is very hard to appreciate its value until you go for a season without it. I have now gone two years with less than 20 good nights’ sleep. It shows. My immune system is very weak now. I have a constant cold and sore throat. I have gained a ridiculous amount of weight because I am the opposite of those people who lose weight when stressed. I am exhausted all day long so I eat in the hopes of getting an energy boost to help me through the day. I also eat when trying to feed Dylan – “Look Dylan, Mummy’s eating it!” It doesn’t work. The child won’t be coerced. What I do lose when I’m stressed is hair. Not because it is falling out – because I tend to cut my hair when stressed. I think in a weird attempt to gain control over something, anything, I find myself taking to the scissors more often than good sense would recommend. But the way I see it now, if I’m not bald it means there’s still some fight left in me. Rage, Rage against the dying of the light.
I’m also going grey. There are moments when I can feel the colour draining out of my hair. Tom and I used to marvel at how young we felt. We met when we were teenagers and on some level felt like teenagers ever since. Until last year. We used to wonder where the point was that people really truly become grown ups. I still can’t pinpoint it exactly, but I know for sure that I’ve past it now.
C’est la vie eh?
And, in the truest of all symptoms of mummyhood, I have to go. No time to get to the bottom of all this.