O.K., so having our child diagnosed with Duchenne was not by choice, let alone having both sons affected. My wife, Alice, and I didn't ask to spend countless hours in waiting rooms, speaking to doctors (Some good, some...well..you know...), deciding what wheelchair is best and wondering whether insurance will cover it or taking a large chunk of savings and weekly salary to buy a gas guzzling accessible van. I'd rather not have to put up with people who stare at my sons, explain to family why we can't attend an event they planned because of a doctor's appointment and wonder why friends fail to call or visit. It wasn't my idea to learn how to pronounce oligonuleotide, dystrophinopathy and chimeraplast mediated exon skipping or take the time to learn what they mean. Dealing with insurance companies is not high on Alice's list of things to do, but she is regularly stuck calling them. Explaining to the one hundred and ninetieth person that Duchenne MD is unrelated to Multiple Sclerosis while trying to sound patient and understanding gets old. But, this is the life my wife and I share and one reason why we sometimes need a break to recharge.
Sometime after my daughter was diagnosed with Diabetes we attended a family camp. Alice and I participated in a group discussion and the moderator encouraged parents to take time together in order to be better able to care for their children. We thought, "gee how quaint", and went on with our lives. After our sons were diagnosed with DMD and our routine become increasingly challenging we found ourselves becoming angry, overtired and impatient with each other. It took one of "those discussions" over who knows what (Which I'm sure I didn't win.) before we realized it might be good to get away. So, being the worldly big spenders we are, we went to a local pub for a beer and a bite to eat. It was nice to just chat and relax together. We weren't away for more than an hour or two, yet Alice and I agreed to try this more often and made a goal to go out once a month without children.
Getting out hasn't ended our frustrations, yet it gives us time to have a normal conversation or discuss something serious without distractions. One thing we had been told by the moderator at the Diabetes camp was parents need to take care of their relationships to better care for their children. It may take time to not feel guilty doing things without the kids (It took me about two minutes.), yet it is important. I regularly run and Alice rides her bike when she has time. We do those things for ourselves and they help us cope and deal with stress. We still need time together and we have to get over thinking it is selfish. The truth is getting out together is a form of respite. Some states provide respite services for families, yet even of they don't, families caring for a child who has a chronic illness need to find a way to take a well deserved break.
What do you do? Each family is different. I know couples who enjoy fishing and many people take long walks together. Going to a movie my not seem like an opportunity to talk or to build or rebuild a relationship, but isn't that how many of us got our start? Even a night for pizza and darts allows you to recharge and laugh together. I also realize there are many single parent families and the need is as great for them for a change in scenery. Spending time with the "girls" or going to the library may be all that is needed to get a break. Finding someone to watch your son(s) for an hour or two is much easier than for a weekend or overnight. I have a sister who watches our boys and they have a great time playing video games together. Things are more manageable when we are rested and nothing is more important to all of us than being their for our sons.
So, I'll still need to make sure I hold my temper when someone parks behind our van and blocks the lift. My stay at home sister with one child will still try to tell us how tough her day has been and expect Alice and me to agree. All the challenges we didn't ask for will still be there and we will need to deal with them. I plan to joke with my sons, help them with their school work and not become irritated when I am asked to get another glass of water or to pick up something they've dropped again while I'm trying to finish work on the computer. Most of all we plan to be the best parents we can be for our sons .