Sunday, October 24, 2010


A mom felt stuck after she found out her 4-year old son has a mitochondrial disorder. The diagnosis was no surprise to her, but she felt stuck. Should she continue to send her son to his preschool that he loves, but that contains germs right and left? Should she take the risk to have him surrounded by kids that would sneeze or cough her son right in the face? She felt stuck. How do you continue to do the right thing for your child when you know that the simplest of colds can lead to a serious illness or even death? Should she just spend all day disinfecting her house, and not have her son leave the house of Purell?

What do people say or think in a situation like this when there is no right or wrong? In a situation when the human being is too small to truly “rule” over someone else’s life, no matter how many precautions you might take.

One person suggested that she creates a bucket list (for you non Americans, a bucket list is a list of things you would like to do before you die) for her son. I was first a bit surprised. Who would like to create a bucket list for a 4-year old? Isn’t that what you do when you know you have lived your life, but still have energy to maybe do those things you never got around to in your busy life?

And then I thought a little more about it again. I came to the conclusion that Jacob needs a bucket list. We know his life is limited, but we want him to live. We want neither him nor us to regret that we didn’t let him live, and enjoy the pleasures of life itself. We don’t want to do things that are right out foolish to put Jacob’s life in danger, just because, but when we can give him life rather than the sanitizer – we will. And when we can do both, we’ll do that too.

I realized that Jacob has already knocked off a few things off his bucket list. He went to Disney World twice within half a year! He got to enjoy many of the things any child would wish for during those two trips. He was in considerably good health, and could enjoy it. Jacob has been horseback riding (hippo therapy) for years, and he loved, loved it!

Keeping Jacob at his school Bal Swan as long as we possibly can is also on the bucket list. He has friends in his life due to school. They look at Jacob as one of them despite his limitations. One of the little boys is so into Jacob that he doesn’t know what to do with himself. When Jacob’s nurse went to get something, he sneaked up to Jacob, and simply squeezed his arm. He just loves Jacob so much, and doesn’t know what to do with all his love for our little boy. Yes, having friends are on the bucket list.

Being in the pool and feeling a sense of freedom of Jacob’s own body is on the list. We go every Monday morning, and it’s always a sense of accomplishment and happiness as we leave the pool, always ready to come back for more.

I wish I could put going to Sweden on the list, but that does feel out of reach. But being with grandparents, aunts and cousins are on Jacob’s list. Spending time with friends. Dress up for a Halloween party. Reading books. Listening to music. Paint. Play. Go outside on sunny days. Celebrating the holidays together as a family, and celebrating Jacob’s next birthday together – that are all on the list.

The bucket list is a way of looking at life, and living life to it’s fullest, not letting opportunities slip away. Make life happen. Maybe we all need a bucket list?

Love, Maria.

No comments:

Post a Comment