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 Guest Blogger Beth


7 thoughts on “He would be 16

  1. Thank you so much for sharing your story! I am so sorry for your loss ❤
    Too often do we stress about the little things rather than enjoy what we have while we have it

    Liked by 1 person

  2. What a beautiful adventure Nolan had. You know I have always said that if only we as adults could see life thru a child’s eyes forever because we all loose that sweet light you so fondly spoke of. I have never met you but I do know some of your amazing family lime Tina and Kevin and of course the kids!! I hope that your story Reaches out to anyone who is going thru the same heart ache as you and your family did because I think it could be a beacon of hope and light. Thanks again for sharing! 💜


  3. So …. never told you his before but you are my Hero. No one should ever have to go through what you have. I love you and envy your strength.


  4. You are one Rockstar of a woman and Dave is amazing as a dad as well. Nolan was blessed to have been given you as his parents. ..the love and amazing g life you gave him.in the short time he blessed us here on earth was nothing other than perfect! I am do honored to have known Nolan and to have spent time with him…and to call you friends. Love you all very much and Nolan will FOREVER live in our hearts, memories and in the rays of sunshine. Xo


  5. Hello Beth. What a beautiful story and such strong powerful words. You have written from the heart, and you will touch so many others with your story. I love to think of your son eating cake made by angels – what a wonderful image 🙂 Take care. Carly

    Liked by 1 person

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