The official end of summer just passed, and I feel like it just started. I had an extensive list of things I wanted to accomplish, and I haven't made it very far down that list. It is so hard to gauge just how much we can achieve, but that doesn't stop us from making a list and then being upset with ourselves for not getting it all done.
We do the same thing with our kids. There is always another therapy or doctor or program. There is still one more thing we could be doing to make sure our child succeeds.
I am not sure why we think this is true? Even thou my son is an adult, there are still moments when I think, if only we had done that one more thing. It isn't as if there was something we didn't do. He had therapies, there were always people coming and going from our house. He was involved in Therapeutic horseback riding. He saw specialist after specialist. He had the surgeries that they recommended and other procedures that helped him make progress. We even paid for a summer program that brought specialist from a former communist block country.
We did all of these things for our son, and yet I still feel there is more we could have done.
The reality is, we had three children, not one. We had other obligations, work, family, among other things.
We did what we could to make the most difference for our son while maintaining some sanity. Which I can't say always worked, but we gave our best. We need to remember that years from now it won't be the one more therapy or doctor visit that will matter.
It will be the time spent as a family, the trips, the moments you will share fondly, and all the inside jokes that only another person who was there when it happened would think is funny.
Therapies, doctors, and procedures are essential. Figuring out how to be a family and how to do life together is more important, and those memories are more important than all the other things we could provide.
A few weeks ago I did something silly. I was attempting to play basketball with a group of men in a park. It did not go so well. I tried to take the ball and dribble to the basket but my feet tangled up with someone else's and I quickly fell to the ground. I did not have a chance to put my hands up to protect my head, so it was the first thing that connected with the pavement. Luckily someone had a first aid kit, and there was an Urgent Care nearby, so I was able to get taken care of without much more than a nasty gash on the side of my head. They cleaned it up and put a large bandage over it and told me to go home and heal.
Over the next week, I walked around with a significant bandage on my head right above my eye, and I noticed something about those who I encountered. I didn't notice at first, but I started to see a pattern in my interactions, and most seemed to fall into three categories.
First was the avoider. Having a conversation about work, talking directly to the person and they said nothing about the large white gauges with tape on my head. Is it that they don't want to embarrass me or they fear it is going to be something they don't want to talk about? What if my response is that it is cancer or something which will make them feel sorry for me? Not sure but I noticed that some conversations were awkward because they wanted to ask but just couldn't.
The second was "the concerned." They usually started with the words "Oh, my goodness." Followed by something like "are you ok" or "what happened." They want to hear the whole story and usually follow up with several questions. This encounter will be followed up by a story about themselves or someone else who had something similar happen to them. They are very empathetic and make sure you know they are glad you are ok before they walk away.
The third kinds are the Smart Aleck or the direct. Maybe these people knew me better, but it wasn't always that they were close friends. The conversation starter was something like "what did you do now" or "Did you wife hit you with the frying pan again." Generally, it was a direct question or comment to find out what happened. They usually want a quick explanation maybe they had a follow-up question and then on to whatever other business we had to discuss.
Over the last 27 years, my son has been in a wheelchair, walker or crutches due to his disability. There were times he was in casts or leg braces due to surgeries, and I don't think I noticed this pattern, but as I think back, I can see that many encounters went one of these ways. Some people talked to us never looking at our son and never engaging him. Others came across overly sympathetic, so sorry for our situation telling us how wonderful we were for doing what all parents do, raise our children.
If anyone took the time to talk directly to my son, they would have found out just how smart and articulate he is. As a parent, it hurts to know people are making assumptions about him based on his physical abilities, not knowing that he is currently in his second year of his Ph.D. in ancient history at an Ivy league school. It seems even worse to know that they could find out just how smart he is only by saying hello.
Being a husband or father is always tough, it isn't. It is that when your loved ones are sick, really sick or they have a special need. There is no worse feeling than sitting at a bedside, even as they sleep, and feeling helpless to fix anything.
I write this from a hospital room where I have been living for the past five days. I have not gotten good sleep any of these nights due to all the various machines going off, nurses walking in to check on my wife or general meeting the needs of my wife as she recovers from surgery. I am the fifth wheel in this machine, the guy who can get ice or water. I can fluff a pillow or straighten a sheet but let's face it, I am an extra appendage. If I were missing, someone who is way more qualified would help. Even when our son was having surgeries to correct many of the effects of having cerebral palsy, I felt helpless. He had a dozen operations starting at six months old. Each one was heart-wrenching. Seeing him lay in the hospital bed or on our couch instead of doing kid things, ripped my insides out! I know each one made things better in the long run, but it didn't make the moments any easier.
I am a guy who fixes his car's brakes. I also change the oil in the car. I do house repairs. When the oven went out, I figured out what part was not working and replaced it. My wife always says I am handy to have around and I take pride in that.
But when it comes to being at the bedside while they suffer through the pain and recovery, I feel like a fish out of water, gasping at the air trying to find something that will make a difference and make me feel useful.
I know it doesn't always come out looking like I have compassion, I am after all, still me. I want the best for my loved ones. I want to see them get better and when it isn't going the best, I get a little abrupt. I don't mean to be. It is just my way of wanting, like the oven or car, to fix it.
My wife in these situations is much more prepared. She is a registered nurse, so when the doctors and nurses find out, they all begin to talk in "medical speak." It reminds me of being in the middle of a group signing or speaking German. All I can do, in the words of the penguins of Madagascar cartoon is, smile and wave.
I know that moral support and prayers are significant and make a difference. I also know that being there, getting the water and helping with trips to the bathroom and making sure someone is advocating on their behalf is very important. It just hurts more than anything I know to watch them suffer, and I want so badly to fix it.
When my wife and I were having our children, not much went as planned. Both of our boys came two months early. The first was a surprise, but the second we had a high-risk doctor, and he still arrived early. Our last, our daughter, required my wife be on bed rest for most of the pregnancy and it was still a fight to keep her cooking till she reached full term. All of these times were tough, with the first we didn't have anyone at home but the dog, but it still meant going back and forth from the hospital for the month he was in the ICU. After he came home, it continued with monitors and appointments. With the rest of our children, it meant needing help. I am incredibly grateful for our families especially both my wife's and my mother. Both of them took shifts taking care of my wife or our children while we watched and prayed in the hospital. There is also no way we could have made the six months of bed rest without them.
For those of you who have family or even friends which are that close and will be there for you, you know how important that support is. It is a big part of why we are where we are today.
I have heard stories of families whose parents live in the same city and yet they are unavailable. I interviewed a father and his parents separately for a book I was helping on. It was amazing to me to hear the parents say that they felt that they were not welcome in the home of there medically fragile grandchild. While at the same time the parents of this child felt the grandparents didn't want to be a part of their lives.
How sad, both sides miss the blessing they can be to each other. The parents miss out on the support and love they need to be a thriving family. The grandparents miss out on knowing their grandchild and miss out on the opportunity to show love and support to parents desperately in need of help. Both sides lose in this family, but the most significant loss goes to the child. I know for our family the successes our children have had, has as much to do with our supportive families as it does with us. We could not have done it alone, and I pray you don't have to. If you are a family with children who need extra care, it can be hard to let others in, but it is so worth it. If you are the family or friends of someone with a child with special needs, keep asking if they need help. Show up and offer support. Do it in a way that they know you will not go away until they let you help. In the end, everyone will be better because you did.
We don’t live in a big city. Getting around for us means driving to the store, the doctor, the movies, wherever, parking and walking into that establishment. Even if we are attending a concert or going to a more touristy location, our local transportation is direct and pretty easy. When my son is using his wheelchair or power scooter, we can generally work out how to get around. Our son, however, is currently attending the University of Pennsylvania in Philadelphia, and he is set up with an apartment just off campus. This makes it easy for him to get to and from classes, and thankfully he can find most basic needs within a block or two of his building. Challenges arise, though, when we come to visit and want to venture out. Philadelphia has subway trains which travel east to west and north to south, and at many stops there are elevators to get up to the street. The real mess occurs when you want to transfer between the East-West and North-South lines where they meet. There is no elevator access from one train to the other. We figured out that, if my son got on the East-West line, he would have to stop at least one station short of the junction, go up to street level, and walk or use his scooter to get to the nearest accessible northbound station. This makes no sense. The vast majority of stations are accessible if all you want to do is get on and off the East-West train. Why, if you’re going to invest in accessibility at all, wouldn’t you prioritize this crucial junction-point?
Our experience in New York was even better. I will concede, there was never a station that said it was handicapped-accessible where we could not get on a train. But it seemed that accessible stations were much fewer and farther between than in Philadelphia. On top of that, it was a downright mystery, from day to day, how to get to the train going in the direction we needed. Just as we thought we had figured out the system’s schedule, it changed. I also really enjoyed the fact that elevators in the New York subway seem to double as public restrooms. Other fun obstacles included gaps between trains and their (marked accessible) platforms that sometimes rivaled an Evel Knievel jump. The train could be up to six inches higher than the platform and about the same distance away. We tried various methods of entry, including my wife helping our son walk onto the train while I ran myself and others over with the scooter. Even when we managed all that, the nearest station we could use to visit the Metropolitan Museum of Art still required a forty-five-minute walk through Central Park.
Still, our vacation was fun, even if my fitness watch said I walked fifteen miles a day. I guess all that is necessary if we want to have adventures together. Overall, a few bruises on my legs and some sore feet are not too severe. We have to continue to push ourselves beyond what’s comfortable for us; that’s the only way anything ever changes. It can be scary. We may have to improvise or change our plans entirely. But if we don't try, we never get to have beautiful experiences and learn just how much we really can accomplish.