When you first find out that your son has a rare disease, you reach out for support, answers, comfort, and understanding. KC and I found all these things in a small MTM-CNM community. With this community along with social media, we are able to follow and share the triumphs, accomplishments, birthdays, and special moments of other children dealing with similar battles as Benjamin. Along with these special moments, also comes heartache. In the past year and a half, we have watched a few of these kiddos gain their entrance to heaven, but until this week, we had never met, or physically touched any of them.
This past summer in Minnesota, we met such wonderful people and kiddos that will change our lives forever. Among them was a sweet family with an adorable, full of life five year old. Matteo loved cars, was mastering the power chair, and had quite a sense of humor. His parents were so fun and full of energy, you could easily see where he inherited his love for life.
Last night, his parents held him until his heart stopped. I can’t imagine what his parents are going through right now, and I find it very difficult to come up with words to comfort them, if that is even possible. At times, it’s hard for me to find comfort myself. His parents have shared their journey with us, and I am in awe of their strength through such a difficult time.
This is a harsh reminder of how fragile our children are, and the uniqueness of our situations. Benjamin and his friends are so happy and full of joy, that is it so easy to forget the severity of the situation. When people ask how Benjamin is doing, I am always happy to answer “great.” He continues to grow, improve, and has stayed healthy this summer. Unfortunately, these times remind me that my son lives on life support, and has a shortened life expectancy. Benjamin and his buddies, though, help you enjoy life’s little things and open your eyes to a beautiful world, that otherwise I might have taken advantage of.
Since we have prayed for this little angel with the girls all week, I thought I needed to share with them that he was now in Heaven. In our house we talk about Heaven frequently. Living with a little brother with a medically fragile disease, I feel it is very important to prepare them, and let them know that death is not the end. We emphasize how wonderful Heaven is and that Benjamin will be able to breath and walk on his own, and that we will all be together again one day.
I feel so blessed to have met this amazing family, and I hope one day we will meet again. Lennon even asked this morning if we could go visit them, so they are not alone. Though our community spreads across countries, we never feel alone with so many families to lean on for support. This journey would have been much bumpier without them.
In mass this morning, we sang “take your candle, go light your world.” It is not important how long your candle can last, but how bright it glows. For Benjamin’s friend, Matteo, his candle did not last as long as we would have wanted, but the bright glow from his candle definitely lit up our world.