My children were 2, 4, 6, and 8 when I woke up one morning feeling as if I’d been hit by a truck in the night that had left every bone broken. It hurt to breathe; moving was excruciating. I was told I had systemic lupus. Ten years later they would add Crohn’s disease to that.
I had diapers to change, still, I got to watch my heart beating on a monitor, I could only eat with plastic forks. My hands were starting to deform from inflammation. I was used to race walking several miles every morning before my husband left for work, my time (not to mention endorphins) to myself to start the day, and suddenly my knees were shooting pain with each step and I was told I must completely avoid all sun exposure to try to tamp the disease down.
Wait–I’m allergic to *sunlight*?! How on earth was I supposed to raise four children, in a city no less with no park time? No explore the great outdoors together time? No go out and dig in the dirt with Mom time.
My mother told me her cousin had died young of lupus.
So much loss to deal with all at once, so much that none of us knew how to navigate through.
There was a morning soon after when my littlest kept exulting, “MOMMY!” with such great joy every time he laid eyes on me over and over as if I’d been gone on a trip and he’d missed me, running to me and throwing his arms around my legs with such happiness. So endearing. Such love. By noon I suddenly realized in surprise that I was feeling no pain. How had that happened?
I didn’t know but I liked it.
Somehow, working through it together, we got through. Were there times we had no idea how we were going to cope? Absolutely. When things didn’t get done? All the time. But all the complications and all the flareups kept bringing us back to the basic truth that our simple presence matters. That love begets patience. It heals the pain.
My children all had the same kindergarten teacher; my second was in her class when all this started. By the fourth child, the woman pulled me aside to tell me my children were the most empathetic ones around and she wanted me to know that. They looked to see when someone needed help and offered it. They were aware of others for whom the day might be harder, and stepped forward for them rather than taking it personally. Not always, not perfectly, but with a wisdom and insight rare, much less in a five year old.
I remember my then-seven-year-old, unasked, offering an elderly relative an arm to lean on…
Has it been hard? Oh you bet. Was it worth it? I once would have answered, what choice did we have?
I think now, looking at the young adults my children have become 21 years later, I could only simply say, absolutely. Yes.
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