I'm in a flare (maybe the last one didn't end, as my husband says). I've been using the cane again and spending as much time as possible in bed.
My husband Jonathan is a tall French Canadian with broad shoulders and an equally big heart. Tonight I was in bed with my older daughter. We were just hanging out, discussing important topics. While she designed our dream house on paper in pink ink, I did some Windows Shopping (what I call shopping online when you're not intending to buy anything...) So she's sketching out our new and improved home and I'm perusing new bedding for our new and improved bedrooms, and out in the kitchen Jonathan and our younger daughter Natalie are making popcorn.
Pretty soon I hear him say to Natalie, "Okay, I think we're going to go eat in Mommy & Daddy's bedroom," and here come my sweet 5 year-old and her handsome daddy, carrying a tray full of popcorn, bowls and our family's favorite toppings -- brewer's yeast (aka nutritional flakes) and grated cheddar. A stool for my laptop and a box of wet wipes and we're ready. All four of us get arranged in the Big Bed and we put on a movie, dim the lights, and start munching popcorn. Pain or not, I'm content.
It's hard to feel so poorly so much of the time. The pain can be really scary; it can whittle me down to an exhausted, impatient version of myself. I worry sometimes not only about my future, but about what this may be doing to my daughters and my husband.
I read a quote that says something like children who are raised by a mother with crutches will learn to walk with a limp. The concept haunts me as I limp out to the kitchen this morning, holding onto both hall walls for support as my oldest runs unprompted to bring me my cane.
The new nerve pain is scary and hard to deal with. A simple grocery shopping trip reminds me how bad I am doing as I begin to limp and have to get my folding cane out of my bag. People look, confused, at this thirties mama who is wearing boots and a skirt, holding hands with a little girl and yet clutches a cane and walks with a limp. It is easy to just look down and not be bothered by their inquisitive stares, but I try to look up and smile at them instead. This makes me happy, because I am showing them that while I may walk with a cane, I am just fine inside.
Before I go to bed, I go into the bedroom my girls share, and check on them. I love this quiet time every night, the maternal feelings that wash over me as I smooth hair out of their faces, tuck them back in properly, pat their sweet little selves. Tonight I feel a lump form in my throat and I think, "If the trade off for all of this love and happiness in my life is AS, I will bear it gladly."
