My mother pulled me aside before I had children to offer the warning that her mother-in-law had provided her. "You will think about your children and worry about them every day for the rest of your life." My granny was a wise woman; nevertheless I forged ahead with my plans to populate the earth.
Enter autism. Up those sage words of warning just about 1000% and you've got an idea how much Jay and I thought about our children during our recent dream trip to Alaska. His job site ensures his safety, meeting his special needs with fairness in a loving environment. However, it is Jay who provides a hand for high-five when Greg bowls a strike on Saturday mornings; it is Jay who leads the tandem bike around local bike paths with a happy Greg behind him; it is Jay who takes Greg to Adventure Sport to drive go-karts and play Fast & Furious. I get to take Greg for his hair cuts, cut his nails, buy his clothing, clean his ears and perform less fun tasks.
Our initial nuttiness before our trip? Take Adam, our first born, normal child. We called him before we left to tell him where everything was hidden in the house, where he could find all Greg's paperwork if our plane went down, where he should go for help to make sure his brother was taken care of. During that same phone call, Adam asked, "Are you leaving tomorrow?" I responded, "No, silly, we're leaving in a month!" "Then why are you calling me now?" laughed Adam. I know Adam. He probably shook his head and decided, yet again, that I am OD crazy.
He knows we're "looney tunes." Having grown up in our household, he knows how Greg ruled. All families of significantly impaired children have impaired lives just like all families of significantly impaired children have impaired marriages. There is an impossibility of survival with continual lack of stability in life. Parents of special children lack harmony. It's part of the definition of special needs.
We think we haven't done enough to make sure Greg is provided for after our more permanent journey. Adam will be just fine. He's got a lovely girlfriend, a life doing exactly what he wants to do and a personality of independence and spunk.
There is just no way we can prepare anyone for how Greg will feel after Jay dies. Believe me, Adam will have his hands full. After Adam and Aunt Cathy, we've lined up family and friends, just in case....back-ups for our back-up. Some parents of special children hope they outlive their child. I recently attended the viewing of one of my favorite bowlers where I witnessed the profound grief of a ninety-year old mother at the death of her special son. I felt no relief in her tears. Needless to say, I want Greg to experience a full life with plenty of joyous moments. I know they are not guaranteed. You know the old adage, "death and taxes."
What else can Jay and I do to make the lives of our children seamless? We can keep ourselves together. We met a teacher of children with special needs while cruising; she told us that her favorite student, Kenny, a young man with Aspergers, was now a child of separated parents. She described the struggles of Kenny's mother to keep communication going, to be there for her son and to manage a single parent household. We described, in turn, our own struggles to stay connected through the fights, the decisions to be made regarding Greg's care, the never-ending screams and tantrums that Greg threw our way at inopportune times.
It is not surprising, then, to imagine the joyous, spontaneous moment during our bike hike through the hills behind Juneau, past Mendenhall Glacier, when we happened upon a waterfall. During our hike, I'd already gotten to know Betsy, a lovely woman from California, a devoted wife of a husband with early onset Alzheimer's, a woman who'd brought her husband on a cruise to strengthen his memory. She showed me true love, dedication and sacrifice, especially when the couple had to abandon their biking because her husband went into one of his forgetful modes.
At that waterfall, with Betsy's plight in mind, I asked Jay to renew our vows. Jay responded, "Oh, great. Does this mean I won't have to do this ever again?" Happenstance is a crazy thing, but as happenstance follows its own definition, one of our companion bike riders was a cruise director, and he laughingly offered to perform the ceremony. That was our moment of a lifetime. Our bike guide, driver and fellow cyclists watched as Jay and I held hands in a very uncharacteristic moment of spontaneous affection, watching Matt wish us another forty years of wedded bliss. He made up the words of the ceremony as he went along, adding that although this sealing of the vows was not legal, (he was not the captain), it was heartfelt. Matt had no idea that this moment was more than a renewal. It represented survival.
Celebrate any success, no matter how small. Find those moments of joy to counter those worrisome moments that Granny Slater promised to be part and parcel to parenting. Best of all, say "I do" frequently.
Keeping a marriage strong is difficult even in the best marriages. Special needs children ramp up the craziness; simple rituals like recommitting to marriage become more meaningful.