It’s been said ,”that it’s the scrupy wheel that get’s the grease”. It seems I’ve been the scrupy wheel quite often these pass few months. If I have a cause that needs grease then I have no problem stating my case. From mental health issues, accessibility for disabled persons, inclusion for all, funding for disability needs, etc. We have to fight for our lives! I feel this should go public, just to give you a glimpse into what we have to fight for and this is just a taste.
Several months ago I contacted our MHA; Ms. Pam Parsons because we were barely surviving. I was speaking with her assistant, who I poured my heart and soul out to. Only to learn we did not qualify for anything ( I’m referring to some help, care and cost for Lauren who has Spastic Quadriplegic cerebral palsy) because of my wife’s income. I heard back from Ms. Parsons this week, not because of my visit to her office but because of my appearance on the NTV show, Heart Matters. It was obvious to me she did not make the connection. When I brought it up, she knew nothing of my visit and had to look up my file to see just what I was all about. I sensed a little disconnection on their part.
After a lengthy conversation with Ms. Parsons it was obvious to me that the Provincial Government was certainly not going to be our lifeline. Yet she did promise to work on our “file” that wasn’t looking all that hopeful.
She then suggested I contact our Federal MP; Mr Ken McDonald. Which I did and again could only speak to his assistant. I documented every word I said during this conversation. And I thought I should share it with you in hopes that public knowledge would add extra pressure.
She started the conversation with, “well what is it exactly you are looking for?” And I started my lengthy monologue:
What I am fighting for is our lives, I feel we are a family drowning in despair, tired of fighting, totally exhausted.
I have fought mental illness all my life, but five years ago I experienced a total mental breakdown. Meaning I was rendered totally disabled; unable to function. I was told by my psychiatrist there was no cure for my illness and that I needed to apply for Canada Pension Disability because it was unlikely I would ever return to work. Our world that day was forever changed. I went from a person that was self-employed for 28 years, to a person with an income of $900 a month through CPD. And because of my illness my brain and body totally shut down. So my wife was now caregiver for me, my now six year old son, plus our now four year old daughter; who at one years old was diagnosed with Spastic Quadriplegic Cerebral Palsy. Again a second life altering diagnosis that we had to face, in an already struggling family.
We lived in St.John’s as long has we could until we were forced into bankruptcy and lost everything we had. And on top of all this chaos, struggle and stress, my wife still had to work in order to keep this already struggling family together.Because of all this financial ruin we were forced to move to Bay Roberts; to be closer to family for some support.
Now five years have passed, we are still fighting to hold the pieces together. I am doing much better but far from a functioning, normal human being. With all the hell my wife has encountered, she was diagnosed now with severe anxiety and depression. Thus she was forced by her doctors to take a leave; no human human being could survive the amount of stress that she is under and still function in a classroom of 28 children and not have a breaking point.
Its certainly true that in our society today it takes two incomes for a normal family to survive. We are far from “NORMAL”. Lisa’s income just does not cut it. With Lauren’s needs alone we require one income, to support her needs. Thus far we have had to depend on family, fundraising and various charities. This financial burden should not be placed on others. it’s not their responsibility to do so. And it’s not our lifestyle to be constantly looking for money from family and the general public, they have done enough. Now it’s time for the Government to step in. Lauren is a child that requires much needed treatment, equipment and care; for which we get no assistance. She deserves better! Now what are you going to do about it?