“You realize we haven’t done this since we were kids.” My wife said in a relaxed tone as we lay on the beach in our lawn chairs like two honeymooners on an island resort. “Do what?” I asked, thinking she was probably talking about the reckless fun we had experienced since we had been on vacation. We were on the verge of being irresponsible and both of us had played so hard with our kids that our bodies were sore.“We’ve haven’t been able to come out on the beach together and just sit, relax and stare out at the ocean…not since we were first married.” She softly replied while taking my hand.
This spot on the beach is very special to us. We’ve been coming here since we were in high school; Kim has been coming since she was a little girl. But for the past 16 years our vacations have always been somewhat exhausting and mostly segregated.
The routine was usually followed without much thought. I would come out on the beach in the early morning to be by myself and Kim would spend the morning in the condo with Jake. Around 10 AM I would relieve her and she would come out to the beach with the other children, or by herself, while I would spend the afternoon with Jake. In the evening when the sun wasn’t so hot, we would all go out to the beach and Kim and I would rotate the one-on-one care with Jake.
Children always change the dynamics of a marriage, and time usually spent lavishing attention on a spouse can be divided for the attention of the children. That is mostly normal and not always a bad thing. But when you have a disabled child, sometimes the time divided can lead to neglect. In my 17 years of parenthood, I have been guilty of this sin many times.
I do not mean that Jake has been a burden. It has been an honor to care for him so deeply for all these years. I mean that when Jake was out of his environment—out of his element and off his schedule, he was mostly miserable and even harder to deal with than usual. Add to that the sensory integration of bright sun, hot humidity and his fear of water and his misery often became contagious.
And so this year on vacation when we weren’t running, jumping, swimming or playing, we sat on the beach and watched our 4 year old daughter dig holes and build castles as our other two teenage sons cruised the sand in the self-perceived coolness of their fledgling masculinity attempting to impress the fickle cliques of teenage girls.
It was a wonderful, relaxing, God glorifying time.
But like sand that blows in your eyes from someone shaking off a beach towel, sprinkled throughout our vacation were the moments of sadness and feelings of guilt. Jake was not with us and we were having the time of our lives in his absence. This thought brought our adventure and our peace to a screeching halt more than once during our great vacation.
Then I came home and read a post from John Knight’s blog talking about this very thing—the guilt that sometimes invades his peacefulness during their one week family vacation, taken without their disabled son, Paul.
Although necessary for the refreshment of the family and good for their disabled son at the same time (he gets to spend the week on his grandmother’s farm), the ebb and flow of guilt and shame often weighs heavy on the parents heart.
I was glad to hear John communicate this.
Being the stubborn, prideful man that I was (am?), I always included Jake in everything we did as a family. I thought this was a good thing, definitely a responsible thing, possibly an honorable thing, and maybe even a godly thing. After all, we were a family and families do everything together. So even if Jake was going to be in an environment where he would be miserable, or even if he made the entire week miserable for the other kids, we were still going to be together, and make the best of it.
Last year we took our first vacation without Jake in 16years. We went all out. I took three weeks off work and we drove a total of nearly 4,000 miles as we roamed adventurously all up and down the east coast. We stayed in campgrounds and cooked our food over open campfires. We slept out under the stars and spent more than one night huddled together in a leaky tent braving a bad storm till early morning. It was a wonderful, dangerous, glorious, risky, fabulous time.
My other children still talk about that vacation like it was a trip to the moon.
Truth is—life is difficult, and quality time with family is needed to strengthen the important relationships that this complexity often weakens. For families gifted with a disabled child, these difficulties can be even more magnified, warranting an even greater need for this quality time.
So as I took my wife’s hand there on the beach, with the surrounding peace and senseless fun of this year, the grand memories of last year, and the lessons learned from all the years past—I resolved to plan vacations well. I will fight the guilt and depressed feelings of blame by seeking out the best adventure for my family based on their abilities and disabilities.
And as the tribe-leader of this annual journey, I will balance safe, serene, solitude with risky, dangerous, exciting adventure—for the good of our family and the glory of our God.