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

Miracle

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.

Thursday, April 13, 2017

Nickolas the Walker!

So Nick has been very comfortable walking with his crutches up. We saw a couple of weeks ago, him taking 16 steps down the driveway.

When we are waiting at the bus stop for Katheryn in the afternoon, and Nick wants out of his chair, we will do some standing

He likes doing it (even though he doesn't show it in the picture). And the kids on the bus cheer him on (many of the kids are in his class at school).

So I decided I would take away his crutch... literally... and see what he could do
I wanted him to walking across the room. For real. To me



Off video, I actually have him stopping in the middle of the room and starting again. This to me, shows that he has control and isn't just using momentum!


I actually made him work hard for the video! We did it over and over again, back and forth.
Katheryn really go into being a cheerleader to him!
Presenting him and calling him a walker!


So this is it! I am calling it!
7 years old and 5 months old, and 10 months after his back surgery.
Real steps! Nick is walking!!!!!!!!!



Thursday, March 30, 2017

More Walking

Ever since Nick started showing off at March Break, walking with his crutches lifted, he has been pushing himself farther and farther.


He is really enjoying showing off and being the star of all of these videos!


This is a video that Kyle took one day after school.
He just started going down the driveway with his crutches up!


It makes me wonder how he will do if I make him walk without his crutches...


But enough for pushing him further. Look at him now!


I counted 16 steps!
I'm not sure why he went all over the driveway, it is on a slant, so maybe it is like skiing, and you go side to side instead of all the way down...

Way to go Nick!
I can't believe he only started doing this 2 weeks ago!

Wednesday, March 15, 2017

Skating at Nathan Phillips Square

A classic Toronto experience, especially with the TORONTO sign.
Since it was March Break, and it was still cold, and we were going to be in Toronto for an appointment, and driving (because it was an 8am appointment). I thought that the star were aligned enough to go skating at Nathan Phillips Square!


I had packed everything, but we were supposed to get a snow storm. So it wasn't until our appointment was done, and there was no storm, that we decided to go.


It was cold.
But Nick did a couple of rounds, and then he was cold.
... So when I say that I packed everything... I didn't pack any snowpants. For any of us.

They had the skate helpers, so Katheryn used those.


We had fun taking pictures with the TORONTO sign in the background. Usually the rink is very busy, but this was in the morning, of a cold day (even if it is March Break), and they had called for a major snow storm. So there was only 2 other families out there with us



Pretty soon Nick was cold, his hands were cold (he only had regular gloves and didn't want his hockey gloves) and he was just over the outdoor skate.



My Dad took Nick into a nearby building to warm up and get some hot chocolate.
Katheryn and I kept skating.
Katheryn wanted a picture to bring to her class to show everyone what she did over the weekend!
But she didn't want the skating aid in it.


We took some funny pictures


And we skated around some more


And Katheryn took a picture of me on the ice!


After about 30 minutes we were done (we outlasted the other 2 families that had started with us).
So we went to find my Dad and Nick and get warmed up.

They had fun skating, but if we do this next year I need to remember the snow pants!

Showing off!

We had a neurosurgery appointment yesterday. And I had been worried that Nick wasn't near to taking independent steps again. One of the signs of loss of function and the reason we did the spinal surgery last June.

Nick and I had tried doing the steps over the last month or so. Just like in the video, and so we watched the video together. But I couldn't get him to stop and just take little steps. He would just want to start and keep going.

On Monday we went to visit my work and go to a couple of meetings (March Break fun), and when we were walking back to the car Nick just started walking with his crutches and as I watched he just started to do this...





Over and over and over.
He liked doing it more than with his crutches down!

I know that this isn't the same as having the control to start and stop, but it is an incredible step!

The video I have above is actually 2 clips together. Well, the first video is cut off.
This is the whole first video, Nick thought it was hilarious and kept laughing at the video. Katheryn said it should be posted on Fail Army or Funniest Home Videos



I don't think it is that funny, but he bounced right back up!

We did have our neurosurgery appointment yesterday and got the all clear for another 6 months (earlier as needed of course).
I did mention that at the bottom of Nick's cyst scar is a bump. I think that it was normal (and when we saw orthopedics, he said he thought it was normal as well). But I wanted the all-clear from Dr Rutka. And I got it. He said it wasn't anything to be concerned about.



I also mentioned that Nick's eyes will sometimes twitch. But it didn't affect his vision, that I could tell. But we were having difficulty seeing the ophthalmologist at Holland-Bloorview, and were about 9 months past our recommended appointment time.
So Dr Rutka said he would put in a request for Nick for the Sick Kids ophthalmologist.

And we don't need to be back for 6 months!