4 minute read
LOVE NEVER FAILS - a moment of inspiration – by a special needs mom
By Maureen Marsh
“Love is patient, Love is kind…”
So began the reading from Corinthians recited at our wedding 17 years ago. We stood at the front of that old Gothic church, giddy and nervous, facing each other and holding hands while the 150 witnesses faded into the background. We pledged our love to each other; we made vows that we had absolutely no way of fully understanding at the time.
We celebrated our anniversary this year in a lockdown. We ordered carry-out and sat on the screened-in porch while our son played in the backyard. This was our first pandemic, but not the first anniversary spent with our child. Our support and sitters have dwindled. We are almost never alone. This is our normal.
“Love does not envy, it does not boast, it is not proud…”
The early years were quieter – we navigated through the usual problems. Why won’t he communicate more? Why won’t she stop complaining? There was a big fight over a Christmas tree of all things. At some point, my longing for a child grew stronger, and we decided to go for it. There were visits to a fertility specialist, and procedures, and teary nights grieving something that I didn’t even have to lose in the first place. I just wanted what it seemed like everyone else had so easily – I left Target in a confusing rage once after seeing three different pregnant strangers happily shopping. At some point, to save my sanity and possibly my marriage, I gave up on the notion of a baby, or at least I surrendered to the idea that I wasn’t in control of the process. And then it happened.
“Love does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs…”
We were overjoyed to welcome our son after a normal pregnancy and birth and had no idea that part of his cerebellum had failed to form in utero. We would learn this together nine months later, crammed into a neurosurgeon’s tiny office at Riley Hospital. I searched my husband’s face for some kind of reassurance or evidence to the contrary and found none. We took our baby home and began our initiation into a club we didn’t ask to join – the Special Needs Parents club. Our son was slow to meet all the milestones, and we weathered the questions and stares together. The temptation to lash out at each other under the pressure was great. The temptation to hold onto each other like a tree in a hurricane was greater.
The preschool years were particularly challenging for me, personally, and I felt myself spiraling. I began to resent little things, like my husband being able to shower alone, eat lunch at work uninterrupted, and even talk to other adults. It was around this time he developed a chronic cough. After an especially disruptive night when a coughing fit kept us all awake, I barked at him to see a doctor.
Cancer.
“Love does not delight in evil, but rejoices with the truth…”
The thyroid had become a giant mass that bulged and pushed toward the back of his throat and down into his chest, making his airway as thin as a straw (as evidenced by the scan the surgeon was holding up). There were surgery complications, and recovering at home one night he held his chest and mouthed the words “call 911.” As they loaded him into the ambulance, my mind went wild with what to do about my son and how to help my husband. My heart was being torn in two directions. My husband had developed blood clots and spent days in the ICU for pulmonary emboli. For the first time, I had to really consider what would happen if I lost him, and planning how I would care for our son alone. I was terrified.
Time passed and there were follow-up treatments and he was feeling healthy and well. He had accepted a promotion at work and we were in a new house. My son started first grade and a few weeks after school started, he got the usual sniffles and cough from new-schoolyear germs. But the coughing got worse. And worse. It felt like a bad dream driving to the ER again in the middle of the night, this time for my baby. He had severe aspiration pneumonia and needed emergency surgery to clear his lungs. We faced each other and held hands as the surgeon asked for consent forms and explained possible complications and wheeled our baby boy away, not knowing if we would ever see him alive again. He recovered fully.
I don’t know if there is a secret to a long and happy marriage. Parents of special needs children have unique challenges, and just like everything else, it seems the usual advice and rules don’t always apply. We may never be empty nesters, for example. But I know how I felt when the very real possibility of losing my partner surfaced, and I know how I feel when I watch him with our son. My life doesn’t really look anything like I thought it would 17 years ago when I stepped into that strapless wedding gown, and our first dance has morphed into wrestling with clothes and orthotic braces and handing off tube feeds like some weird waltz that we dance over and over. I have no idea what the future holds, but for now, I can without hesitation proclaim that I would say “I do” all over again.
“Love always protects, always trusts, always hopes, always perseveres. Love never fails.”
