Wave of Emotions

Parenting a child with a terminal illness means that I ride a wave of emotions on any given day. I can go from elation at him saying a new sentence to sobbing tears of sadness when I watch him trying so hard to do things his little sister can do with ease. The thing that tugs at my heart right now is when Nicholas says, "Mom, I want to get down and play." What he is really telling me is that he wants to run around and chase his sister, play with toys like she can, and follow me around as I do my daily chores. It is the new thing that makes me cry nearly every day. At three and a half, Nicholas should be able to walk, to run, to jump, to hop, to move his arms and legs every which way. He is starting to realize that he is physically different from us and his sister, but he does not have the vocabulary to explain to me how not being able to move makes him feel.

Nicholas does not have his own power wheelchair. When he got one to trial at home last year, he absolutely hated it. He wanted nothing to do with it and when we would strap him in it and encourage him to move about, he would cry and whine until we would take him out. Just yesterday I asked if he would like to try one again and he answered with and enthusiastic "yes!" So I will be contacting our rep this week to see if we can get a loaner chair again for Nicholas to try out. It might just be what he needs to feel like a "normal" kid.

Nicholas really is the sweetest boy and never, ever complains about anything. He is happy just to be with his family and friends. He just likes to feel included with whatever is going on around him. I often think about how he is so similar to other kids his age and rarely even notice that he cannot move anymore. Not moving is just part of who he is and who he has always been. The part that I have the most trouble with is the terminal part of his diagnosis. The unknown is what terrifies me the most. I would be the happiest mother in the world if I left this world before my children, which is the natural order of things. I know a small number of people living with SMA who have surpassed the prognosis of SMA. Some men and women are in their 30s and 40s. I recently read a story about a mom who has SMA who gave birth to two children. There is a young man who just started his first year of college last fall. These men and women inspire me and I cling to hope that Nicholas will live to see adulthood. I can only pray that medical researchers can get funding to find a cure in the next few years, which would definitely prolong Nicholas's life and would hopefully offer a better quality of life, allowing him more movement, and many more years on this Earth.

A few nights ago, I lost hours of sleep because I went to what I call the "dark place." It is a place where I imagine the words I will say about my son at his funeral, the place where I wonder what we will dress him in when his casket is lowered into the ground, the place where I try to imagine what life would look like without him here. It is an awful, dismal, scary place that leaves me bawling and sobbing and shaking with fear. It makes me feel helpless and powerless and lost. I can only allow myself to go to this "dark place" once every six months or so, because it leaves me emotionally drained and depressed for several days at a time.

The only thing that pulls me out of the darkness is imagining my son's beautiful face. His wise eyes remind me that neither he nor I are in charge of his destiny. He smile tells me that he chose this life. That his life of suffering is changing people's hearts, one at a time, mine included. He reminds me that he is bringing people (even long time believers) closer to Christ. He reminds me that this earthly life is but a mere blip in time and that we will eventually spend all of eternity together in Heaven. Only then can I return to the present moment and remember how blessed I am that this amazing little soul chose me to be his mommy. I could never have asked God for a more precious gift and there is no way I can ever repay Him for his generosity. What I know I can do, what I will spend the rest of my life doing, is trying to live a life of love. A life that will make my son proud. I will tell his story while he is here and for years after he is gone. I will make the best of each moment and celebrate his accomplishments. I will make sure that each person I encounter feels a bit more joy and happiness because that is how people feel when they are around my son. He is a shining example of true love, compassion, and patience. Nicholas has forever changed our world and we will never, ever be the same.