child disability – The road less traveled

I Hope there are Art Classes in Heaven

Today my oldest son, Christian, would have turned 31. He passed away almost 2 weeks after his 21st birthday. We are going to the cemetery to clean the headstone and set some gifts out for him. I am also going to take a pottery class, which starts tonight, in his memory.

Even though he had physical limitations, Christian enjoyed making homemade greeting cards, drawing, and working with all sorts of media in art class. When he was in high school, his art teacher nominated him for an award in honor of a Zach Culliton who also overcame his disability to create a beautiful painting of a fish. Christian’s name remains listed to this day.

Christian took a lot of time and effort in making the picture which earned him the award. It was a very exciting evening and so many of our friends and family showed up to celebrate. I even met Zach’s mother and she was very kind. Zach passed away not too long before I met her. I hope to see her again.

Christian was always focused on his abilities instead of his limitations. He made numerous Star Wars lego models, enjoyed doing puzzles, and put his best effort into everything he did. On one particular project when he was in high school, he had to draw a creature made from three different real animals or insects. He then did a ceramic rendering of it. I have it sitting on the table today to remind me of his beautiful art and to give me strength to step outside of my comfort zone for 6 weeks on Saturdays for a couple of hours. I really hope I enjoy it and that pottery will be one of my gifts.

Like many of the hand made greeting cards Christian made for me over the years, I want to make some beautiful pottery for him. I want to picture him smiling down from Heaven. My heart is heavy and I would rather have Christian here to bake his favorite chocolate cake and order him pizza for dinner. I imagine he is doing something far better than anything this earth could ever provide. Happy Birthday my dear son. I know you are having the best time building unlimited lego models and making beautiful pottery because in Heaven, you are not sick. I love you and miss you with all of my heart and soul.

img_0385-1 — This was drawn by my dad shortly after Christian passed away.

Feed the Birds

th-9 — The state bird of Montana is the Western Meadowlark

When we moved into our first home in 2001, our realtor bought us a bird feeder. I had never fed wild birds before but soon after, I found a perfect spot to hang it right outside of our dining room window. At first a few sparrows would show up, but if they saw any movement at all on the other side of the window they would dart away. I was told that they just needed to get used to us. The sparrows would take a few days to empty the feeder and I slowly became consistent in making sure the feeder was filled.

In sub zero temperatures I would sometimes feed them twice a day.

It didn’t take long for all of the birds in the vicinity to find out where the grub was located. I started to fill the feeder daily and there were times in the winter when they would empty the feeder in about an hour! Over the years our checklist of sighted birds has grown. The number of finches and doves has grown each year. An american goldfinch passes through and so do red winged blackbirds. We really enjoy the babies in the spring.

Feeding the birds is costly, especially when they gobble it up, and it can also be messy and a hassle. The benefits outweigh the work. My two sons were disabled and over the years it became more difficult to leave the house. We learned to find pleasure in the simple things – watching the birds. We have seen the finch population increase with each passing year and have also seen more doves. Chickadees frequent our feeder as well and they are the friendliest.

The summer before my oldest son, Christian, passed away, we had an abundance of birds. He loved grackles and we had an abundance of them feasting and causing mayhem in the backyard. The mourning dove population exploded with most of them perching on the power line in the alley. We also have Eurasian collared doves. Most of the time less than 10 will be here enjoying the safflower seed off of the sidewalk. In the later part of summer, I looked out back and to my astonishment, there were 20 of them back there!

We had almost daily visits from this hawk last winter.

The winter after my son passed away was the darkest, coldest winter we had ever experienced. The sparrows and finches gave us comfort when they were brave enough to visit the feeder and risk being snatched up by the hawk that lurked in my yard. Today they cannot eat the food fast enough because the babies are very demanding. It is such a joy to watch the parent finches watch over and feed their babies at my feeders. My son Andrew and I believe that Christian is sending us birds to comfort us and to let us know that he is okay. Over the last couple of days, we have had 2 doves perch on the lift right outside the dining room window and stare at us.

If you have a disabled parent or family member who is unable to leave the home frequently, a bird feeder is an excellent idea. It is an easy, joyful form of entertainment and is something we will always enjoy and find comfort in.

Take the deep end

Remember when you first learned how to swim? Most of us walked into the shallow end and gradually made our way into deeper waters. This works just fine when we are learning how to swim but I have found in life that taking the deeper end is better. One of my favorite bands, Two Door Cinema Club, has a song called Beacon. A line from that song resonated with me and it has stuck ever since I first heard it:

Take the deep end, swim till you can’t stand

cuz it will make a difference in the end.

After finding out that my two sons have Duchenne Muscular Dystrophy, I made a decision to help them grow up as normal as possible. I kept them in school until 10th and 11th grade and they went to regular class. Unfortunately, I had to withdraw them from school for health reasons and help them earn their G.E.D.s. They participated in field trips, had friends over to play, went swimming and even rode horses. They did homework, played clarinets in band and were like any other teenager despite their physical limitations. It may have been easier to throw my hands into the air and put them into special education, but I knew that would not be the best in the long run.

I still run into situations almost everyday when I have to remind myself to take the deep end. There are many evenings when I do not feel like cooking but I know that giving them convenient junk will only accelerate their disease. I was not the “cool” mom who let her kids drink soda and eat tons of sugar. I knew early on that it would only make their futures worse. Yesterday morning, I did not want to clean my house. I did it anyway because doing just one thing can make the world a better place – whether it’s something big like helping a disabled child through school or something small like picking an object off of the floor for someone. I was floored when my youngest son, Andrew, told me that he would drop a pencil onto the floor only for another kid to just look at it and walk away. We need to teach each other to help and to care. We need to take the deep end because it will make a difference in the end.