Yes, medicine saves our children, and we are very grateful for that. The assistance programs are not there, however, and it is us, the mothers, who pay the price in 98% of cases.
Stress is a central aspect of our lives. Whether it is owing to fear of losing our child at any time, the family situation that requires hospitalization, or financial stress, we face tremendous pressure.
The care we provide to our children 24 hours per day because of heir fragile health means that it is often difficult to return to the labour market, even when our children are adults.
We end up in physical pain from lifting our children, who get heavier every year. We are constantly on the verge of exhaustion. We neglect our own health, our appearance, and our personal development. Unfortunately, our freedom is severely limited.
In this whirlwind, we have realized that there are a lot of gaps in the public system, in particular as regards the financial assistance provided to families such as ours. In 2015, we therefore founded the movement Parents jusqu'au bout, whose goal is to obtain equality between families with a seriously handicapped child and host families. We have received considerable media and political attention, culminating in the support of the CBC television program, Tout le monde en parle.
In a campaign of just 16 months in Quebec, we got the provincial government to create a new program, the supplement for a handicapped child with exceptional care needs, which will provide additional assistance to some 900 Quebec families.