“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”
– Vivian Greene
The above quote has come across my path 3 times in the last couple of days. Days, which have been, in all honesty, difficult.
I am trying – trying – to come to a place of acceptance about the realities of our life. Gavin is home from school sick today, as he was yesterday, and the day before, and the day before that. As he has been 5-7 days of every month so far in 2014.
I was recently reading a post on a health website in which the author talked about living with chronic illness. He discussed his years-long search for a cure, for wellness, about doing everything right and still not knowing what optimum health is. And how he finally realized that he just needed to accept the truth of his situation and stop struggling against it. Acceptance meant being at peace regardless of the circumstances he currently found himself in. He said:
“I believe that it’s not possible to take truly effective action until we fully accept what is. But that’s not easy. In fact, it’s one of the hardest things we can do. Because to accept something means to let in all of the feelings and sensations that go along with that something. In the case of illness, it means feeling the grief associated with the lost dreams, the fear that we may never get well or that we won’t survive, and the isolation that comes from living with chronic illness.”
Reading that, tears are streaming down my cheeks. The grief of lost dreams. The fear that he will never get well. The isolation that comes from living with chronic illness. These I know, only too well.
It has now been two years since he has his first bout of cyclic vomiting syndrome, although we didn’t recognize it as such at the time. In these two years, the episodes have gone from every six weeks, to daily nausea, to a few times a week, to every six weeks again, and back to a few times a week again. He now vomits about once a week, but often feels too nauseated to get up and go about his normal business. He may suddenly feel quite well for a little while, and then out of nowhere, needs to lie down, or throws up, or very suddenly needs to leave wherever we are.
He is almost never able to eat 3 meals a day and is extremely thin. Countless lunches, dinners and snacks have been scraped into the bin untouched.
He has been scanned many, many times. The shunt has been explored many, many times.
It is this constant uncertainty of what will be that leaves me feeling unbalanced and off-kilter.
I was called to pick him up at school on Monday, as he had turned pale and was feeling sick. The first signs that an episode might be starting. When we got home I forced him to rest in a dark room. He then felt incredibly, hyper-actively well for the afternoon, but with no appetite. He threw up and went to bed dosed with prophylactic meds. He slept for 13 hours, and wasn’t well enough to go to school on Tuesday.
Yesterday, he woke up seeming quite well and ate a big breakfast. I would have loved to send him to school, but we had yet another appointment at the hospital. Dermatology clinic this time.
Sometime in March, two odd bumps appeared on the back of his neck. When I first noticed them, I thought they might be insect bites, and watched for them to go away. When they did not go away, I took him to his paediatrician. Last week. She agreed that they may be cysts, but thought they might also be swollen lymph nodes. She said with any other child she wouldn’t worry about it, but with Gavin… We decided to check in with dermatology, and thankfully we have a previous relationship with them, which is why we were able to see them this week instead of months from now.
Of course, last week I Googled “swollen lymph nodes.” I’m sure you can imagine what I came up with. Lymphoma. Cancer. Damn you, Internet. Why do you have to be such a frightening place?
Back to yesterday – the dermatologist examined his neck and said she feels they are some sort of benign epidermal cyst. NOT swollen lymph nodes. We will watch them, and if they get bigger, or change, we will biopsy them. But for now, keep any eye on them and go back in 3 months time to check in.
When the resident examined Gav before the staff came in, she asked me in wonder how I had even noticed the bumps in the first place, as they are quite small and not discoloured. Obviously, this young woman does not yet have children or she wouldn’t have asked me that. Every mother knows the keen eye with which we examine our kids. We notice that new freckle, the loose tooth, the eyelash out of place, the little scrape or nick that he got in the school-yard that day.
We left dermatology clinic with some relief on my part and went to get lunch. Gavin was unable to eat his bagel, but still insisted he felt well enough to go to school. So we flew through mid-day traffic to make it in time – and as soon as we arrived at school, Gav felt unwell again and had to leave straightaway. I am not proud of myself – I threw a mini temper-tantrum like a child, petulantly slamming doors and driving us home in a grey, foggy rage.
I have never, never been that good at changing plans on the fly or making sudden detours. I like things to proceed as I have predicted they will and it is hard for me to roll with the punches when they don’t.
Despite my sadness, I want to cultivate a sense of gratitude for what is possible and good in our lives.
He felt well enough to go to his gymnastics class yesterday evening. He ate a big dinner. Yes, he felt ill afterwards but he slept soundly.
He was well enough to come to a performance of the Lion King last Sunday night. He loved it.
I am grateful that he was at least able to get on the plane to go to Australia and Florida this year.
I am so grateful for every birthday party and playdate that he is well enough to be a part of.
Although I accept the truth of this moment, it does not stop me from continuing to research other treatments and trying new things in an effort to improve the quality of his life.
And this is a big one: he is still recovering well from his cranial surgery one month ago, the sutures look great and he has had no issues with them. We met with plastics last week and his surgeon felt there was no need to even follow-up with him. So in a positive turn, there is one less appointment to attend at the hospital.
Just want to say you are such an inspiration! I have a mini-tantrum sometimes and yet as a mum have never had to go through anywhere near what you and your family have. Wishing you all the love and hope for Gavin xxxx
Gavin seems a resilient and happy child – and that is a tribute not only to his own strength of character but also to yours and Craig’s, and of course to the power of the love you all have for each other. A mini-tantrum is just part of normal life for any exhausted and disappointed parent – we are human! I hope Gavin is feeling and eating better.