9 years

I remember it like it was yesterday.

I remember driving silently to the hospital. I remember waiting in the waiting room.

I remember the consultation room and the position of the chair I sat on.

I remember the entourage of med staff who came into the room

I remember the words, “Mucopolysaccharidosis 2…degenerative disease…no cure”.

I remember driving home and the many cries of despair the following days.

I remember weeping to my parents and family hundreds of miles away.

I remember the stunned silence from my good friends.

I remember.

I will never forget.

But, 9 years from that day, I am not the women who sat in that chair wondering whether she would survive her new life of caring for a child with a terminal illness. Let alone to be able to get out of bed and function the days after.

Diagnosis day is quite unlike any other day I will ever experience. It was the day that changed me. And sort of speak saved me.

It saved me from a life of just doing and never really seeing, feeling or living.

It was the day I realized just how fragile life is and how easily that life can be taken away. A day I met death and stepped into it. The day my journey would take me to feeling the pain.

9 years now, I have stopped dwelling on it. Diagnosis day. Instead I dwell on the blessings. He’s still alive being the greatest. They told me he would not make it to 10. He will be 10 1/2 in March!

I have been blessed with so many special relationships. From teachers, therapists bus drivers, doctors, church community, friends who only know me in the after, old friends, strangers, and on & on I could go.

I have been blessed with the gift of appreciation. Oh how I appreciate things I may have neglected to notice or care for.

Handicap parking, accessible buildings, parents who wipe their kids runny noses, friendships that would never be, how to execute a fundraiser, video cameras, extra photos, an extra minute in the morning, disposable diapers, palliative/hospice care, neighbors who bake, the ability to walk and talk, special needs garb, having to be slow, and so many things from each moment to moment.

So today, I reflect, but I am not sad.

I am grateful.

Grateful for another day to hold his hand. Another moment hearing him laugh. Another moment of smelling his hair. Another day to care for his every single need.

Another chance to remind him how much he is loved and one day he will be healed.

14 thoughts on “9 years

  1. Such beautiful words “dwell on the blessing”
    We learned this earlier on with Sébastien !
    Every moments every eye gaze, every kisses, ever moments holding hands…
    Sending you both love 💕

  2. Thank you Jamie, not only for putting your emotions into words but also for putting my souls gratitude into words.
    Tears of shared destiny.
    Tears of love.

  3. Thank you for sharing your courageous journey with all of us. I think of you all often. Jack has taught so much to so many of us as have you

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