He would be 16

Our journey began 16 years ago, when my husband and I celebrated the birth of our beautiful baby boy, Nolan Bruce Robin Jackson. He was the first to be born at RVH in Barrie on Saint Patricks day in 2001. We knew that all of our St Patty’s days to come would be super special. We never knew then how special they would actually be.

It would be five and a half years later when we would have to say good bye to our beautiful boy after an almost life long struggle with an incurable brain tumor. We had five and a half years with a beautiful boy who taught us so much. I love you so much and think of you every day, we all do.

You were our little sunshine, our Pooh Bear. You brought joy and love into our lives and taught us so much about life and about each other. You did not have words but we knew how much you loved us and how much we all loved you. I never heard you say mama but I do now in my dreams. Your little sister can talk my ear off and sometimes it can be, for lack of a better word, annoying. But then I think of you and I could listen to her sweet sound forever. Your brother hates any kind of medicine and fears going to the doctor. I know that is because you could never escape the endless amounts of medicine and Dr. visits that you had to endure. You shine though in our lives every day.

When you were 10 months and we found out about your condition, I begged the doctor to allow me to bring you home, but the experts were very unsure about what kind of “quality of life” our baby would have. But we did bring you home Nolan and we gave you the best quality of life we could—and you gave us so many lessons in return.

Lesson 1 (and probably the most important one): we were told by a social worker that YES Nolan is our son and together we will take care of him, but above all we must take care of each other first. So often a child becomes more important than the couple that created the child. Don’t get me wrong. Nolan was the most important thing in OUR lives. WE did everything for him together. Almost every doctor’s appointment we attended together, and every decision we made together.

Lesson 2: Nothing can ever be “that” bad again. I have great anxieties and always imagine the worst possible outcome of most situations. But then I remind myself that I HAVE ONE HECK of a life experience to compare things to.

Lesson 3: Nolan, you taught us love, and taught us how to live with what we were given. You were in a wheel chair but you went cross country skiing, rode the rides of Disney World, and swam at the beach and in pools. You could not speak words but you made beautiful sounds and loved to sing songs with mommy, nanny and grandma. You were legally blind but your eyes shone when someone walked in the room and you smiled that amazing smile. You spent endless times with family, grandparents and cousins and friends and even got to experience school. These are many of the things that people take for granted, but are so many things that in my opinion shape the “quality of life” we all have.

So to my beautiful boy: I would not trade that time I had with you for anything. Every moment, the happy, the sad, and the terrifying all shape those precious years that we had with you.

So here we are here today. What would you want to do if you were here today?

I guess I will never know but I will imagine that you are in heaven, running though tall grass and looking at all the wonderful colours there are to see, feeling the sun on your face and maybe even tasting some cake made in heaven by angels.

I love you Nolan.

xo Beth

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