More than most...
...that is what my daughter has lost.
More than me, my husband, my kids - most of society really, and it continues.
We are now in stage 3 of this pandemic. That means, if you are not living in a congregate care setting like my daughter Maia, you are allowed to resume - with precautions - any number of things. Go to the movies, buy ice cream at the corner store, sit in a restaurant, or get your nails done.
Maia has
been locked away from the world, like everyone else living in congregate care settings such
as long-term care or group homes, since March.
As a mom,
this has been incredibly devastating for me. The guilt that I felt when I chose
to place Maia in a group home setting at age nineteen has been magnified 1000 times
because of the policies which continue to exclude families like ours, around the province.
We are in
stage three of the pandemic, in a northern region where our cases have been
non-existent for most of this month.
The staff of group homes like hers get to enjoy their own social bubbles, go to restaurants, visit the
mall, and start to feel the beginnings of normalcy. But not Maia.
She's disabled, and can't talk - so she can't tell everyone that she wants to have these same rights, too.
I get it. She's vulnerable, the others in her home are vulnerable. But we can minimize risks...
When I knew that visits with Maia would be restricted at the beginning of all this, I understood. I welcomed it. Maia will be safe. She’s so vulnerable. She will die if she gets this. Keep her safe. She's safe. I will be with her when this is over. But it was hard.
Months without touching her, only seeing her from behind a mask, 6 feet away outside in the driveway of her home, where she couldn't tell if we were smiling. She would hold her arms out, confused, and wanting us to come close. Almost every visit, I would turn my back to her to leave and melt into tears of agony. What happens if I cave and rush to hug her? Will they make her leave? Put her into two weeks of even more restrictive isolation?
Maia is an infant in her mind, although she is twenty-five. She cannot understand why her world has ended. No more trips to the pool. No movies, no strolls at the mall. No more outings with her passport workers.
As things
began to improve and we began to understand how to get the virus under
control and restrictions began to relax – the policies pertaining to places
like where Maia lives, have not changed enough.
On May 28,
2020, the Ministry of Health issued guidelines: COVID-19 Guidance: Congregate Living for Vulnerable Populations
Agencies should have developed guidelines that included a parent/guardian as an essential visitor.
FROM DAY ONE.
Don't think a parent is essential? Please.
Why and how parents of children in group homes were left out of the equation, especially now entering stage three, is beyond me.
Why, in stage three, haven't the families of those who live in congregate care settings been able to at least see their loved ones up close, with the proper precautions?
Please note - I love the agency she is placed with. I love her group home staff. None of that matters though when policies in place by our government prevent Maia from having the same rights as others. Yes, we have restrictions. But we can do things. She cannot.
Recently, a friend lost her son. He had a similar condition to Maia. He was turning fourteen. Not sick per se, and it was unexpected. Maia is twenty years past her life expectancy. So, this scares me.
Maia isn't sick that we can tell. She has gone to the doctor to find out why she has lost weight recently. They gave her a stomach pill. I think it won't help. I think she is sad. Isolated and lonely. She misses her family. She misses her life.
I can see her shoulder bones. Her pants look huge on her. She's now only 58 lbs. That's not good. She may die tomorrow, or the next day - or maybe next week - or in ten years. I don't know. What I do know is that she has lost her freedom going on six months. She cannot go for van rides (group home van is down and no parts available until the end of October - blame that on covid-19 and lack of availability), she can only go on walks in the area. No one is allowed to take her out. She is basically a prisoner in her home.
Parents are fighting this all over the province. We are essential. We are essential to our children's mental health and wellbeing. We offer irreplaceable love and affection.
See these heartbreaking stories:
There are efforts by Lisa Gretzky, MPP for Windsor West to encourage the provincial government to create a COVID-19 essential caregiver strategy.
#morethanavisitor
Patient-centred? Family-focused?
Where are these words at this time?
We can keep our family members safe and give them the love they deserve and help them fight the isolation and confusion they can only be suffering after almost six-months into this.
We can keep following the health protocols. But let us in...even one family member. Because at the end of the day,
my daughter has lost the very life that the government is trying to protect.
My heart is broken. Families are devastated. Someone fix this horrible, broken system that tears families away from their babies. Yes, I understand there are risks, but they can be mitigated. I know she cannot go out and run around in public. I get it, BUT Let families be reunited. There needs to be some consistency around the province.
We can develop safe visiting policies that allow families more access to their children. It is not just my daughter I am asking for. It is families all over our province and elsewhere.
I love you, Maia.
Please, don't give up.
-Mom
Whoever is listening, if you won't let them out, PLEASE...
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