Hope Grows into the New Year

Here we are at the end of another year. Time surely is flying by. Elizabeth and I really try and make a conscious effort to slow down and enjoy the moments we have with the kids and to also have as many moments together as we can. With our best efforts to try and slow life down, here we are again closing out another year.

Promise to Kate has had another outstanding year thanks to all of our supporters. Our success has far exceeded our wildest expectations. As this year comes to an end, it is looks like we are going to set a new fundraising record. This is following on the heels of a record year last year. As a reminder, we are taking donations through year’s end. If you need any last minute tax write-offs, we are happy to assist you.

2017 has been another year of growth and self realization.  Kate has continued to grow and get stronger. She continues to fight through her daily challenges with such a great attitude and joy. One of the realities is that as she gets older she becomes more self aware. It is this that I have long feared. I have always had my personal struggle with knowing the battles she is fighting along with thinking about the ones she will endure as she grows older and dreading the day she too will begin to recognize her differences. Kate is beginning to notice that:

A. She is different from others. Cognitively a little and more so that she can’t do what others (“friends”) can.

B. She is starting to feel isolation from “friends”. (This is the most difficult for Kate as well as for us as parents!)

I say these not to draw sympathy. It is something so many kids have to deal with in their life for one reason or another. All parents have to do our best to help our children through them. With that said, it still hurts so much to see her hurt. Kate loves her “friends” and I believe they love her back. Because she is different emotionally, cognitively, and physically, her “friends” have a hard time relating. When she and her “friends” were younger it was easier for them to play and get along because the divide in those areas was not so great. As time has passed, and as I have feared, the divide has gotten bigger and the natural separation begins. Her “friends” are truly great to her and really do go above and beyond to love on her; but at the end of the day, they are kids who just want to have fun and be kids.

These experiences have also brought me to face my own shortcomings as a child. I grew up with a boy named Butch. We were always in the same schools together from elementary through high school. Butch was a very nice kid and very smart. All I knew or could understand was that Butch was different in the way he ran, walked or stood. Then one day he was in a wheel chair and I learned that he had Muscular Dystrophy. Butch’s mom was always a regular presence at school and wherever Butch was. She was absolutely the nicest person in the world.  She was always smiling and making everyone around her feel like they were the greatest person in the world. Butch, if you haven’t figured out was born with Duchenne Muscular Dystrophy. My very close friend Peter (Butch lived on Peter’s street) and I would play with Butch relatively frequently, or at least I made myself believe. The fact is, I realized as I got older that I didn’t play or interact with Butch nearly as much as I should have. I was always intimidated by his limitations. When I was younger I wanted to just go run and play sports with all the other kids and as we entered high school I never got out of my own little self absorbed world. I never took the time to try and bring Butch into my world. I was always very nice to Butch and spoke with him in hallways and class….wait a minute…that’s a lie….I never spoke with him in class because we didn’t share the same classes. Let’s just say he was with the smart kids who later became, the doctors, lawyers, and professors. I studied alongside today’s (well we will leave it at) hard working crew. When I graduated and was attending the only college that accepted me, I often would think about Butch. Sadly, I wouldn’t go as far as reach out to him, but I did think about him often. I also shamefully realized that I was aware of his differences even when I was in high school but chose to do nothing. The amazing thing was his mom, from as far back as I can remember, was always thanking me every chance she got for being Butch’s friend and for how sweet I was to Butch. I also remember accepting those adulations while also thinking, I haven’t been that great.

I was in college when I got the call that Butch had passed away from complications of his disease. His mom had asked that I be a pallbearer because I was one of his best friends (Peter was one too). I was shocked that he was gone. I had no idea that was a real possibility because I never took the time to know that. I was sad and mad, mostly mad at myself for being such an ass. Then it hit me. I was asked to be his Pallbearer nearly five years after I last saw him or spoke to him. So much came into focus. Mostly how I screwed up and how lonely he must have been. Too many thoughts and emotions to list out, but as I sit here writing this and telling this for the first time I also realize that his mom truly was a great person. She pumped me up and reached out to me so frequently and warmly every time I saw her because she viewed those times as opportunities to try and create a social life for Butch. I get it now and it pains me more today as I think about Butch and the life he could have lived and experienced if only I had been more aware and less selfish. I know I wasn’t a bad person and was just being a typical kid. I also recognize that isn’t an excuse either.  I have chosen to share this, not to draw shame or create sympathy from others. I write this as part therapy and to share where we are with Kate in her life.

With all this said, Kate and our family are beyond lucky for the friends and families we have. It’s just now we are having to face what we have long feared, but knew was coming, which is to build a fulfilling life for her. We need to make sure she gets to do and be everything she can, to have the social joy in life she deserves. Elizabeth and I are entrusted with this awesome responsibility which is why we are doing what we do. It’s why we ask so much of you every year, our family and friends who have created the proverbial village. 

So as we wrap up another impactful and record year, thank you from the bottom of our hearts for giving us the tools and support needed to champion this cause that is near and dear to our hearts.

The Conte Family on a recent trip to University of Utah where Kate is participating in a three-year study related to Congential Myotonic Dystrophy.

The Conte Family on a recent trip to University of Utah where Kate is participating in a three-year study related to Congential Myotonic Dystrophy.