Several weeks ago Travis and I went to a hearing for medical cannabis at the Capital. Before it started, he asked me to introduce him to another dad of a special needs boy and I told him “let’s wait until the hearing is over because it’s about to start”. Sure enough, the hearing ended and the dad was not available as I had to hurry back to my office one block away. And so, because of my selfishness to wait, the dads never met. The crisp air wasn’t the only cold I felt that afternoon. My husband’s mood was equally chilling, and when I inquired if he was mad at me, his response was “I don’t want to talk about it”. Later that evening after the dishes were neatly stacked and the kids were settled doing homework or disappearing to the basement as kids do, we talked. What I had failed to acknowledge before the hearing was what my husband didn’t say. He didn’t say he feels lonely much of the time. He didn’t say how hard it is to be home all day with someone who cannot talk. He didn’t say how endlessly tiring it can be to spend two plus hours every morning preparing medications and tube feedings and a feeding pump and cecostomy cares and bathing and dressing and brushing teeth and settling back in bed before starting in on the bills and the laundry and the cleaning and the grocery store list. He didn’t say how long the mornings get repeating this familiar routine day after day after day. He didn’t say how much he longs for a friendship with someone who gets it, someone who walks a similar road of tasks and mundane routine. And in my failure to recognize everything my husband didn’t say, I robbed him of an opportunity to be heard and understood.
Because every day, every single day while I am at work interacting with other adults and stretching my mind and chatting with friends, my husband is home with a mute child who cannot share emotions and thoughts and laughter. It’s an amazingly fulfilling, cherished role but in the same breath, equally lonely and isolating. Because he is the one who is on constant alert for pain and discomfort which are only found in a known facial expression or body position. He is the one who lifts the heaviness of a 100 pound body that cannot even put a sock on cold toes or climb into the car. He is the one who calls the home health supply lady when, after putting away 6 or 8 huge boxes of supplies, notices one of the numerous different items we use every day is missing or in short supply. He is the one who packs the bag for swim therapy then stoops over in the hot, wet changing room to put on the swim diaper then repeats the process after pool therapy is over to dry and dress and places legs into braces and get the boy back to school to his para. He is the one who calls the dentist and the doctors and the school and the pharmacy and the therapists making appointments, changing appointments, dealing with billing issues, getting prescriptions straightened out and handling every other detail that arises because of the numerous medical issues. He is the one who consoles the angry, crying, sick child who can’t tell anyone what is wrong. He is the one who changes sheets, folds and puts away loads of laundry for the boy who doesn’t know what sweatpants are. He is the one who sits in the sterile, quiet hospital room when sickness overtakes the boy, waiting for the next doctor to come in and give their summary and opinion of events and the next treatment while I have to go to work because all my sick days have already been used up from previous hospitalizations and surgeries. He is the one who wipes drool falling from the sweet chin, changes diaper after diaper, watches for tripping hazards. He is the one who turns on cartoons when the little one sits patiently on the couch staring at the black, quiet TV and knows exactly what time Peppa Pig and Umi Zoomi will be on.
The blessing is being able to be home to care for the quiet little boy in our home and receiving the quiet love beaming from big green eyes that say “I get it, daddy. I know how hard you work to take care of me. I love you so very much too”. With the blessing comes the hard, lonely, deafening quiet days that no one understands. But those eyes, they tell such stories. That sweet little mouth with crooked teeth turns up into a big, generous smile of understanding for the daddy who does it all. And some day, some bright, beautiful perfect day somewhere in his future, the little boy who can do so little will stand next to Jesus and brag about the daddy He sent to care for the broken boy who simply needed a big loving heart to take care of him. Some day the little boy will tell his daddy with a new, strong voice, “You did good, daddy, and I noticed. I heard every loving word you sang to me. I felt every gentle touch and noticed those strong arms that lifted me in and out of the bath. I heard all those conversations of you managing my complex needs and constant appointments. I saw the heartache, the loneliness, the pain of my brokenness in your eyes.” Not many children, especially those with special needs, have the privilege of having a daddy home with them all day. But my little boy, he is blessed to know the hard work and dedication of a father who loves deeply. It may be a lonely road most days, but a cherished path without regret it is.