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2009: Year of the Somewhat Ordinary


I don't know what constitutes an ordinary day for your family, but I think ours may have been slightly different than the average family's. After Jaymun was in and out of the hospital all summer, he still had to go down to the hospital clinic every week for bloodwork, checkups and outpatient chemo treatments. Most of the time, we didn't get back home until his siblings had gotten home from school in the late afternoon.

I checked the date on the photos in this post. September 18th, 2009. When I look at our calendar, I see that we had just come back from the hospital yet again that same day. You can even see Jaymun's hospital band still around his wrist. Jaymun had had his stitches removed from his ommaya surgery first, then he had been sedated for a bone marrow aspiration and a spinal tap. I recall that he was incredibly frightened to see the examining table in the neurosurgeon's clinic and that he screamed when they tugged at his stitches, many of which had become embedded in his skin. On top of that, he endured being put to sleep for more procedures, something Jaymun was sadly familiar with and recognized as being scary when he saw the mask coming towards his face. The whole morning and afternoon, he'd had nothing to eat or drink since the evening before--standard protocol with anesthesiologists. None of these things would be anything you would want your own child to go through even once, much less on a weekly basis. But this was Jaymun's normal since birth.

Depending on how Jaymun felt after his treatments, it could be a couple of days before he felt more like himself. It always amazed me how the little ones could go through all the horrible procedures throughout their cancer diagnosis and somehow find strength to bounce back. Jaymun's energy was endless when he felt good. If you could see him running around, you'd never guess what this kid had just been through mere hours or days before.

On this particular day, we found ourselves in the backyard outside later in the evening hours. The sandbox was always the destination. No matter what happened down at the hospital, I always felt like if we could just get Jaymun back home, he'd be alright. There was something about watching him dig in the sand and drive his trucks on the makeshift roads his brothers constructed for him, a familiar peace that all could be right with the world, at least for a few hours.

September 18th stands out in my mind because I specifically told myself to be still and drink it in. Warm breeze, beautiful sunny light just before supper ...you know, the kind of evening that borders on perfection. Jaymun was perfectly happy, which in itself wasn't unusual, but I knew that in his life, it seemed like we were always waiting for the storm to hit. I hated that we could never relax and just let life unfold for him. I hated that I could never look at what was happening right then at that very moment, and not wonder where we would be a year from now, six months from now, one month, even a week. Cancer makes you feel as if you are always standing at the very edge of a high cliff and one wrong step can send you hurtling over.

The wonderful thing about my fears was that Jaymun shared none of them. He had no idea what cancer was, couldn't prounouce the word "leukemia" and could care less about the future.

He lived his day precisely as it should be lived--in the moment. Sometimes I wish I could have that childlike faith again, that all the problems of the world can be solved by swinging on a swing or jumping on a trampoline.

Other days, I believe they can.

I took these photos that day because while I knew it wasn't so important for Jaymun to specifically remember this day, I did know it mattered very much to me. When I look at how carefree he was, I immediately conjure up the melodic sound of crickets chirping in the tall grass of the field next to us. I remember looking over at Jaymun being loved on by his brothers while he took a bottle break on the trampoline and feeling that it would be alright, even just for the remainder of the day, to let go of my worries and let him be the happy boy God designed him to be.

But the single most important memory of this wonderfully "ordinary" day was that it's become anything but that to me now. Jaymun was a special child, in so many ways. His enthusiasm for life's daily pleasures was simply contagious. In hindsight, the fact that he could appear so healthy in these photos was particularly amazing, because in just ten days, we found ourselves being admitted to the ICU and two weeks after that, Jaymun breathed his very last.

Jaymun loved life. Loved it. Happiness to him was being surrounded by brothers who included him in their pretend play and wrestled with him as much as he wanted. He was spoiled every minute and smothered with affection every way he turned. I think that's what hurts the most now. We didn't long for exotic vacations or fancy cars to drive around. We just wanted the chance to give Jaymun what every child deserves: a childhood. We already know that we will start the new year the same way we ended this past one--intensely grieving for a precious son and little brother who taught us so much in just three years. If you have the privilege of still having all your loved ones in your life, you already have everything that matters. I'd choose the ordinary days over any other kind in a heartbeat.

Because if you
string them all
together, they
make up the life
of an extraordinary
little boy.