Friday, 29 April 2016

One year later...

Tomorrow is yet another anniversary in our life that we would rather not remember. On April 30, 2015 we were told Xavier's cancer was back.

It hit me like a stray bullet. We were expecting news about a possible ventricle blockage, but did not even suspect the tumour.

It was late in the day when JoAnn, our clinic nurse, called. I was at work and went into an empty office to talk to her. She was devastated to break the news to us, but they needed us back at the  hospital in two days.

I was in disbelief. Shaking and not really comprehending what she had just told me. It wasn't sinking in and I didn't want it to. He wasn't going to go through this again.

The rest of that afternoon is blurry. I remember my boss and a coworker driving me home. I remember trembling as I walked into the house knowing I now had to break the news to Mark. I just hugged him and didn't say a word. That alone was enough. He knew.

I am so happy to be where we are today. It was a long and difficult road last spring/summer but Xavier is doing very well again. We have been blessed with an extremely strong and courageous boy.

But as always, there are lingering effects. And two of these things are particularly hard for me. I must pray a lot to find the strength not to blame myself.

I suffer every time Xavier has an irregular symptom. I panic inside. It's a battle not to let my mind go back to the very first time he was sick. I feel it took too long to diagnose him and fill with guilt about the pain he suffered while we tried to find out what was wrong. So now I immediately jump to the worst conclusion and do not hesitate to have the littlest thing checked out for fear of missing something terribly wrong again. But I also don't want to be that paranoid parent who takes their kid to the emergency department for a paper cut. It's a delicate balance of determining what's normal and what's not.

Other parents may not realize what a luxury it is to know your child's headache is just a headache or their stomachache is just a stomach bug.

Then there is the detrimental effect this has had on our daughter Mackenzie. The extent to which she has suffered is far worse than most know. Her personality has been shaped by her experiences and negatively affected her entire self-image.

I have been doing a lot of reading of material provided to us by our wonderful therapist about attachment trauma. It disturbs me to think she has this, but everything I read is bang on!

Unfortunately children who have  been abused or neglected can develop attachment trauma.
To have to admit Mackenzie was neglected is heartbreaking. It was never our intention; it was not consciously or maliciously done but rather a product of the situation we were given.

A child's brain is in a massive growth spurt up to age 2. Those early experiences are most influential in how their brain develops and circuits are wired. Unfortunately in Mackenzie's case, those years were extremely traumatic. She was often passed off to other loving family members, separated from her mom and dad for sometimes days at time while Xavier underwent the fight of his life. Her primary caregivers were at a distance. As positive and happy as we tried to be, a child senses your stress response.

Her behaviour pattern today strongly mimics that of a child with attachment trauma. Her personal beliefs about herself are skewed. Socially she suffers and has been viewed by her peers as being "weird." Her experiences growing up have been extremely different than many others which makes it hard for her to relate. Emotionally she struggles. Unable to recognize cause and effect and moral direction.

She is not a bad kid. She has a disorder that must be treated with care just like her brother's cancer. It takes patience and a team of people to treat her so she can become the best Mackenzie she was born to be.

I ask for your prayers for our family as we go for Xavier's MRI next week. Let there be no surprises (except good ones!) and time for us to continue healing from last year's experience.




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