I wrote this blog post months ago and it has been sitting in my “Draft” folder forgotten. I found it tonight and thought I’d publish it. While it has a lot to do with the challenges of navigating marriage with chronic illness as an unwanted third party, it also touches upon the life-changing lessons my little boy, Mikey (our birthday boy), teaches me again and again every day.
“Mommy, play with me,” my sweet boy pleads.
He has lined his trains up on my arm as I lie on the couch face down in a pillow willing the nausea and pain to go away.
“I’m so sorry, buddy. Mommy, can’t right now. I’m afraid if I move I will throw up all over your train table.”
He giggles at that thought and decides not to risk it. He plays while I continue to ride the waves of nausea.
I’m so sad today. Most days I can cling to hope and contentment, but not today. Today I need to be sad. Last night was supposed to be date night. Our children were at a sleepover and Josh and I were going to have some much needed “just us” time. I had planned dinner by the fire, a bottle of red wine, snuggling with pillows and blankets in front of a movie, a midnight walk to see the meteor shower…and, of course, “dessert” (wink, wink). Three weeks of bed rest had brought with it an understandable generalized chaos and total loss of privacy. Not that I am complaining — we were so very cared for by grandparents living with us to help care for the kids, and friends and kind-hearted strangers in and out of our house at all hours graciously bringing meals, doing laundry, cleaning and running our errands. We are blessed beyond measure with community. But, with relative strangers folding your “unmentionables” the stress level tends to build.
I knew my husband needed privacy, a quiet house and a well-appearing, attentive wife. And, I needed to feel like more than just an illness or a burden for a night. I needed to be a best friend and lover again. Unfortunately, despite all my security measures, chronic illness hijacked our night…again.
To prepare for our date I showered and scrubbed, did a thorough shave, moisturized and plucked…all the personal grooming tasks that are often left untended during bed rest. I found an outfit that was comfortable for cuddling but not the pajamas and headband my husband had seen me in the past three weeks.
All the flurry of getting the kids out the door to their sleepover, picking up the house a bit and self primping had exhausted me. I laid down on the couch trying to regain my energy. And then it came…
Knock.Knock.Knock. My unwanted, unwelcome, intrusive guest…
“Did you really think I would leave you alone and cooperate with your plans? Don’t you know better by now?”
I could feel my fever rising. My body aching. My brain shutting down.
“Noooo!!! NO. Not tonight. You are NOT invited to this party” I tried to fend it off.
Meds! Get the meds! I quickly gulped down a handful of meds to combat pain, fever, nausea, vertigo, and generalized crappy feeling. And, I shoved that nuisance out the door and waited…still hopeful. Maybe I would feel better. Or at least be able to fake it.
Unfortunately, what would usually perk me up seemed to squash what was left of any energy I had left and it felt as if my body was made out of lead and my eye lids had 50 pound weights on them. I could barely focus my eyes.
In walks hubby…
I can tell from his posture, tone of voice and general demeanor that he had brought our uninvited guest back in with him — the burdens of the past few weeks plastered onto him.
I don’t recall much of the next hour. I know it involved terse conversation, mindless television, and unspoken wants and needs. We did manage a fire in the fireplace; yet, instead of snuggling in front of it, we sat on opposite sides of couch in our own disappointed and disillusioned worlds. He restlessly mentions that one of his favorite bands are playing in DC and I know he needs an escape. So, I tell him to go. By this point I can barely stay conscious I feel so drained and sick and I am heartbroken. And my beleaguered husband is far too lost in his own pain, different but equally as intense, to realize that I am grieving and have had my life sidelined — again — by something I can not control nor predict.
What I want is for him to pull me into his lap and snuggle me. Play with my hair. Tell me I am beautiful despite this stupid illness. I want him to love me in spite of it all and let me sleep in his lap while we watch a movie in front of the fire. I want to hear he is not disappointed in me and that he knows and appreciates how hard I try to give him and our children a “normal” life. And, I know, in his silence, he has just as many unspoken wants. I don’t know how to ask. I don’t even have the words most days and neither does he. It’s just now as I write this do I know what I wanted from him last night.
We are still trying to figure out how to “do” marriage with this third party named illness. I’m not hopeless though. I’m just tired. I’ve been knocked down this round, but I’ll get up. And so will he. We’ve committed to show up, every day. And that has not wavered. With practice we will learn to identify those wants and needs and speak them out loud. (We will put a gag around chronic illness and not let it speak for us.) I just wish were already there.
I admire my little boy — the one who wanted mommy to play trains. He knew what he wanted, he asked for it, and when I couldn’t give it to him he happily made a contingency plan knowing that mommy loves him. This is my same child who demands kisses and hugs, cuddles on cue, and is always present, positive and assuming the best about people. I thank God that He has given me my baby boy as an example to live by.
Today I can be sad. This is all very messy and real. No fairy tale endings or quick fixes.
Tomorrow I go back to “defiant joy.” (Thanks Lisa Copen!)
We will only get there by tears and truth.