I am not sure where to even begin to describe my wife, Jackie. Wow, has life been turned upside down since we said our vows and started our journey together.
I knew coming into this marriage that it would be a little rocky and hard at times. Jackie already had a son, Nicholas, who had autism, intellectual disability, seizure disorder and cerebral palsy and was nonverbal. The fact that Jackie, a single mother who was cautious about letting people into her and Nick’s life, allowed me to enter and start our family together made me feel blessed. It wouldn’t be too hard, right? So we began our life as a unique family, from any traditional viewpoint, and it has been an amazing roller coaster of a ride.
I’ll be honest, speaking for adult males living with ADD, we must give credit and praise to our counterparts who live with our ADD daily as well. Then throw in three kids (two of whom have significant disabilities), three dogs, five therapists, six attendants and eight nurses—it sure does put the FUN back in dysfunctional.
Blessed are we that we are still together in our marriage. The reported divorce rate among families that have children with disabilities is incredibly high. We have persevered, and we press on. Sure, there are things that are not fun or that downright stink in our family. I work two jobs so I am rarely home—and that stinks. Jackie handles the house, manages the therapy and nursing schedules, and does the pickups and drop-offs, frustrated and rightfully so.
I sleep downstairs on the couch most nights. This is probably the hardest part of our marriage. I do the late night watch with Nick and his nurses, and she does the early morning care for Ethan and his routines and procedures. We do not want to bother each other during the little sleep we do get in order to function the next day.
What I wouldn’t give to be able to run away with her, even just for a week, and leave this all behind for a short while. I mean, I have not even given this woman a honeymoon since we were married years ago. To be able to stop and focus on her and her alone would be a blessing to us both. Yet, here she is, and we stand together, going through the day-to-day routines and fights and successes and miracles that our boys are going through, and we are together.
I am the loud, emotional fighter for the boys, their needs and their rights. They do not have voices to fight for themselves, so I triple mine to make sure that they are heard and that their needs are met. It is exhausting but needed.
Jackie is right there by my side the entire time.
I worry; she stays focused. I look to the future (whether it be one week, one year or 10 years from now) and our plan for the boys; she attends to the here and now and makes sure things are functioning correctly and going smoothly. I raise my voice, cry and scream if needed; she remains calm and looks at the big picture.
When I am in the heat of a moment, passionately fighting for the boys, she often reminds me, “Josh, this did not happen to us. It happened to our boys.” We are along for the ride, being parents to our fabulous three children and blessed that the Lord gave them to us.
The Lord has blessed us in many ways—sometimes hidden, but nevertheless we are blessed. We balance each other out, we ground each other, and we love each other. Jackie never wants to be in front of the crowd; she sits by and supports me and the kids in everything we do. To me, this makes her stronger and more wonderful and freaking amazing.
We may not be traditional, we may let our freak flag fly a little too high, but we do it as a family, and we take the day head on. All along Jackie is in the midst, supporting every single one of us. She is amazing, she is beautiful, she is my wife and so blessed am I.