A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, May 24, 2018


I have sat in a room with my doctor and been told that continuing the life of my child would be detrimental to our family, to his life and to consider the hardships continuing with a pregnancy would bring to my daughter.

 This is a doctor that I know well and respect. And he believed everything that he said to me. There was no malice, he was not trying to harm me or my family. He believed that there was no value in life with spina bifida. That this was compassion and offering truth.

I still respect this doctor. And when he sees my son, and hears our stories and sees the videos, he talks about miracles. But my son is not a miracle. Nothing magical happened that made his life with spina bifida worth living. He is not a medical miracle who beat the odds. But in all honesty, with 60-80% of pregnancy diagnosed with spina bifida being terminated, regardless of gestation, in this day and age, in Ontario, in Canada. He did beat the odds.

We beat the odds. To bring love and laughter into our lives. Many things that are expected with spina bifida have happened.

But what my doctors see is the person, the boy, and not the spina bifida. And calls it a miracle

Yes we have spina bifida in our life, but it does not define us. 

Life with my son is so much more than spina bifida, more than hydrocephalus. Life is more than a string of diagnosis’s or a series of hospitalizations.

Life is the big baby belly laugh at 3 months old. The mischievous grin at 3 years old, and the full-on peal of joyeous laughter at 8. Life is about struggling in school, feeling different and falling down. Life is about getting back up, taking one step at a tie and moving forward.

The last 6 months have held our hardest and scariest and most out of control spina bifida (but really hydrocephalus) moments. All of which are not unexpected by themselves.

A shunt malfunction. It feels like we train for this every day. Only it had been 7 years. But we identified it, sought help, had a plan, knew what to expect. No unexpected, it was alsmost like we were newbies in the hospital.

Then a malfunction, a risk after a surgery Plans, contacts, identify and learn about wound infections, treatments, more infections, EVDs (external draining device… so an external shunt), picc lines and more treatment, surgeries and scars. It looks scary on paper. All of these things! These diagnosis’s, these conversations, waiting rooms, recovery, hospital stays and bravery beads. But you take each step back with another step forward. Looking forwards, even if you need to cry and scream in the shower.

Then it all happens again. Step back, fall back, lose control. You can’t fall apart because you need to help hold him together. Everyone asks how you di it. How strong you are, how brave. But you don’t feel strong, you don’t feel brave. You just feel yourself. A bit shattered, a bit scared and angry and jealous. Jealous of all of those other parents who don’t have to worry all the time, who don’t know what it is like to have a diagnosis

But step by step, plan by plan you move get home. You get your boy back, life back and it seems like a nightmare.

Nick says he doesn’t feel brave or strong. But it isn’t about strength and not being afraid. Life with spina bifida and hydrocephalus is not being pushed down, not giving up and not allowing fear to rule, to stop you. Even after 83 days in hospitalizations, 10 surgeries, 13 scars, 3 EVDs, 2 piccs, 4 shunts, and many, many bravery beads (3+ strings)

After all of this, and as life normalizes again you realize that all you need are smiles and laughter. You treasure every day and you love stronger, appreciate longer and just live your life.

That is our miracle.

1 comment:

  1. I could have written this. My pregnancy was filled with anxiety and worrying about many things after I learned that one of my two would have SB. Right now we’re on tethered cord alert.

    My plan is to get the urologist to do another urodynamics test to see if my son has any differences in his bowel and bladder function. I’ll probably be writing a email tonight asking for a urgent appointment. I have talked with his ortho who advised that I should keep a eye on him last week at a appointment. Sometimes I hate Spina Bifida. We do not have a NS anymore or I would have also spoken with him as well. I hate that his bowel and bladder function is going to change after months spent allowing him to achieve independence.