This week Matthew was invited to a party by a girl in his youth group. Alice and I know the family fairly well, yet we haven't been to their home and didn't know how Matthew would get inside with his wheelchair. Fortunately they called to let Alice know they were borrowing a ramp. This was a good sign. The evening of the party I offered to drive Matthew just to be certain he was able to get inside, make sure he was comfortable and let the family know about his needs based on what the other kids would be doing. We got to their home and saw the ramp in place at the front porch and another smaller ramp leading into the house from the porch. I rang the bell after watching Matthew drive up the ramp and we were let inside. There were a few friends there and more arrived as I talked to his friend's mom. They were prepared for Matthew and I stayed to talk for a while as more kids arrived and the house filled with the sound of conversation and laughing. I occasionally looked into the living room from the kitchen to see Matthew talking with different friends each time. Well, it was a party for younger people, so not to be a "helicopter parent" I left them to their fun and headed for home.
So often family and friends learn about our sons with DMD and don't know what to do. Despite talking to them about how they can help, many fail to comprehend what really would be useful to them and us, how they can give us a break or they simply disappear from our lives. Sometimes my family will try to compare their situation to ours, not to diminish what we are going through, maybe to appease their inability to accept how difficult it is for us. Whatever the reason many people fail to see what it is really like caring for someone with a chronic disabling disorder and make us feel as a burden or simply isolating us. And then we meet people who "get it" right away.
This family "gets it". Without knowing a lot about what Matthew needs they observed how he gets around and made plans so he could get into their home. They arranged their furniture in a way they thought would make it easier for Matthew and asked what more could be done so he would feel welcome in their home.
Another person who thinks like this is my son Patrick's shop teacher. Patrick is in the eighth grade and decided to take the wood shop class. I encouraged him because I used to make furniture and enjoy wood working. I figured anything he couldn't finish he would either get help with at school or we could finish at home. To my surprise his shop teacher called me at home to tell me his ideas to make the class more suitable for Patrick. He asked about Patrick's strength and if I was comfortable with him using machines with supervision and set up so he could use them from his wheelchair. The teacher explained he saw such enthusiasm in Patrick for the class he couldn't stand to let him sit idly while the other students were working. He wanted my ideas and we came up with a plan that is working. Another person who "gets it".
So, what am I looking for from family and friends? I certainly don't expect someone to watch my boys daily while I goof off. They are my kids and I enjoy being their father. But, a night out with Alice would be fun every now and then. Before our daughter Rachel started college she stayed with her brothers for an hour or two so Alice and I could have dinner together. We still go out, but now we take the boys with us. This isn't a problem, yet we need mom and dad time. O.K., we've had offers, but when we decide to accept it seems there is a reason it won't work or isn't convenient "this time".
Before my father passed away I told him and my mother when they asked what to get the boys for Christmas to buy movie passes and take the boys. It's not that we can't do this ourselves, we want the boys to have this time with family instead of another toy they can't use or a book they may not read. Take them to lunch I suggest, I'll drive the van and leave you and pick you all up later. As the boys get older I think this is more important for them to get out with family and friends. It hasn't happened.
Across the street our neighbor is retired and spends much time working on his yard. He's the guy on the street who has the time and his yard looks like the cover of Better Homes and Gardens all the time (I can't keep up with him!). This summer the boys began going over and hanging out with Joe. They listen to the ballgames, talk about nothing and the boys read while Joe works in his flower beds. Joe joked to me that the boys weren't working hard enough and loves to tease them. He wants them to give it right back and Matthew and Patrick do. He doesn't believe in treating the boys differently and enjoys having them come by. Joe invited me over one afternoon for a beer and told me he hopes the boys like visiting him as he knows they need a change of scenery and someone to "argue with". He "gets it" too.
So, maybe family is too close. Maybe they can't accept the fact that my sons won't be here forever. Other friends stopped coming by or asking Alice and I over. I realize not everyone deals well with challenges. Still, a little courtesy goes a long way as does spending time with my sons or making sure they are included.
Matthew and Patrick are exceptionally well adjusted especially considering they have DMD. I like to believe the way Alice and I treat them and have high expectations of them is part of that reason. There are others who enrich their lives. Yes, when my family comes over for the holidays or an occasional visit they are good to the boys. But often the people who stand out come from unexpected places. A retired neighbor, a casual friend and a wood shop teacher are among those I have found. Sincerity cannot be faked and I appreciate what these people do because that is who they are. They just get it!