Eight years ago today my life came crashing down around me. Three little words… “there’s a spot” were all it took to transform an ordinary day into a nightmare. Thirty-six hours later, my son endured a 9 hour surgery to have a juvenile pilocytic astrocytoma tumor removed from his brain stem. In the days, weeks and months that followed his prognosis was uncertain and his recovery was like a never-ending roller coaster ride.
I am notoriously lacking in patience. Seriously, I have almost none. So waiting 8 hours longer than the doctors expected for him to start breathing without the assistance of the respirator almost did me in. Then there was the feeding tube that he continually pulled out. The fevers that spiked. The non-responsiveness. The non-existent answers from the doctor. The attempt at rehab. Hallucinations. More surgery. More rehab. Infection. Vomiting…numerous times a day for months. Mood swings. Having to learn to walk again and use his hands again. And all the other things that we take for granted like being able to bathe ourselves, brush our teeth, put on our clothes and tie our shoes. And then, more surgery…and more surgery…6 in all.
As any parent who has slept in a chair in the PICU for weeks on end knows, the hardest thing in the world is to watch your child struggle to survive. My son has told me many times that the whole experience was way harder on me than it was on him. I hope and pray that it is true. At the time it was unbearable for me that he was so “out of it” all the time, but in hind-sight it truly was a blessing. Those days were bleak to say the least and there were times when I honestly didn’t think we’d all survive it. But he did…and we did. He was an imaginative 14 year old boy when this journey started and now he is a wise-beyond-his-years 22 year old man living 2,000 miles away from home and following his dream of being a screenwriter in Los Angeles.
So why am I telling you all this? Well, mainly because it’s the anniversary of the diagnosis…but there are other reasons too. Before all this happened I would hear people say that their cancer (for instance) was the greatest gift they ever received. I remember thinking how crazy that was. How could anyone see it as a gift? As we were going through this with Elliot, I would cringe when I’d hear people say things like that. At the time, it seemed like a cruel punishment…not a gift! And while I’m still not 100% convinced it was a gift…with the passage of time I can see that there are some good things that came out of the experience.
I know Elliot has his own list of positive outcomes but those are his stories to share. For me, the lessons learned are these:
- I love my kids more that I ever dreamed possible. All 3 of them.
- I no longer take their health and safety for granted…however, I refuse to limit their choices out of fear of the unknown.
- If I am strong enough to endure the numerous near death experiences of my child, I can pretty much deal with anything else life sends my way.
- Life does go on. It may be different than I planned but different is sometimes better.
- A crisis has a way of either bringing people together…or not. It strengthens some bonds but magnifies problems that already exist in others.
- This too shall pass. I remember my mother and my grandmother both saying that phrase and at times I probably rolled my eyes when I heard it…but it was the one thing I kept repeating to myself over and over during those weeks and months as life presented one obstacle after another.
- Determination and love are strong allies.
- Not every situation is life-and-death. Keep things in perspective.
- Some battles are worth fighting and some are not.
- When people show you who they are, believe them.
- One experience teaches us things we will need to know for later experiences.
- You never know what tomorrow may bring so find your happiness in today.
- Happy “endings” do exist…so expect one!
These days I’m finding myself in the midst of another life altering crisis. As I said, the experience of Elliot’s illness may not have been an outright gift…but I’m able to use the lessons I learned from the experience. Now, at least, I know that I AM strong and I AM capable. Oh…and this too shall pass.