Well, my name is Leomina Valderrama.
I have two beautiful boys.
Bryan is 22 years old and Brendell is 15 years old.
Bryan is in his 4th year of university at Ryerson.
And, Brendell is in Sir Osler William High School, and he's in Grade 10.
Brendell is diagnosed with cerebral palsy, and also, he has seizure disorder.
He has a chronic lung disease and he is prone to pneumonia.
I get up very early in the morning.
At 5:30 to 6:00 o'clock in the morning, I have to get ready because there's some meds
that needs to be given early in the morning.
Brendell is a very sociable child and he is very peaceful, quiet.
Brendell is 15 years old now.
So, basically I stayed at home for 15 years.
And, that's the great joy that I made a decision for myself and, I say that, you know, even
a lot of people, I said, with all his, you know, challenges when he was at Sick Kids,
he was even referred to palliative care.
And, I said, you know what?
While I'm still strong and healthy I said, you know what?
I give my time to Brendell.
I am alone, basically, to look after him.
And, although I have a lot of help from nurses, I have some friends, but there are a lot of
times that I look at myself, so if something happened with me?
So, this is a challenge that I am facing right now.
And, you know, where do I have to put Brendell?
Who's going to look after Brendell?
Although he has his brother but, you know, to put the responsibility on Ryan, I don't
really want to put that.
He has his life.
He's young.
He has a future in his life.
My family is really affected with mental illness.
I just lost Brendell's dad, my loving husband, you know, in April of this year, and it was
tough.
Brendell's pediatrician spoke to me about that, that a lot of parents that have children
with disabilities, you know, either one parent, or both parents has, like, you know, high
rate of, you know, going through depression, anxiety.
You know, you get tired, physically, mentally.
Sometimes you don't understand how the kids go through this especially with Brendell,
that he's not verbal, he's not mobile.
I think it's a lot of demand for him to see him suffering like that.
You know, he cannot understand and, you know, and at the end, he's close to retirement.
And, you know, I think it's on top of each other, that really trigger the mental illness.
[00:02:41]
Maybe two years ago, that was very tough with me.
And, of course, you know, my husband's mental illness was getting worse.
It was getting severe.
And, of course, the abuse was really unbearable.
And, I get to the point I'm really getting so tired.
You don't feel like telling your story to somebody else.
Do they really understand me, or is it the right person that I could talk to?
I mean, I have my Pastor, I have a lot of friends.
But, you want to talk to somebody that you trust that could help you.
I called Bloorview.
It's Barbara Germon.
[00:03:06]
I first met her when I was going through with my treatment being with breast cancer because
she was a breast cancer patient, as well.
And, she really walked me through.
She was my mentor.
And, when I needed help, you know, I said I think, right away, I said, you know what?
I'm going to go back to Barbara Germon.
She's a very sweet lady.
She's down to earth.
And, you know, she has a lot of resources to help.
You know, she'd give me a hug.
I can cry on her shoulder when I go for my appointment.
And, you know, we have to make a list what to do.
She give me this list and she said, "Leomina, this is the three things you're going to
do early in the morning".
She said, "you smile.
You go out and go for a walk and breathe the fresh air".
And, I stick it on my fridge.
I have to make some resources on how to help myself.
I have to go to the library and, you know, find all those books, resources that I can
get now we have this Internet.
You can go to the website and then just click whatever you want to know and especially live
healthy and positively.
So, I read a lot of things.
And then, when I cannot really look after myself, I get so tired, the only thing I can
do is just I just go for a walk in summertime just to get fresh air.
I put my earphones on.
I love to listen to Christian music.
I was in a park.
This is a kids park.
And, I said, "My, I'm really so heavy.
It's a burden".
I get into the swing.
It's a beautiful morning.
Brendell leaves at 8:00 so I have 8:00 to 9:00 that I can go walk in summertime, beautiful.
If it's nice weather, and I just swing myself.
I was looking in the sky and I said, "Oh, my God.
It is so beautiful".
And, I start crying.
You know, but crying is good, it would just lift up the burden off me.
And, I swing myself like a kid.
The health practitioners for Brendell, they're really very good.
We have a very good relationship with all of them.
I'm the voice.
I am the eyes of Brendell, Brendell is visually impaired.
He can see and he can hear, but how is he going to verbalize himself to talk about his
pain, about what he feels.
So, I talked to them a lot of times, you know what, I said, "the best, you know, caregiver
is always the parent".
I was reading in Bloom about self-compassion.
[Chuckles] And, I said, when I was reading it, I said, "oh, my, this is me".
Sometimes, you know, we parents, we forgot about those things.
You know, like, that we needed some time for ourselves.
You know, I have two friends that are close by.
You know, we go to McDonald's.
We just go for a coffee or...I like gardening.
So, in summertime, I have a beautiful garden at the back.
I plant a little, you know, a little vegetable garden.
But, I like to plant because, you know what, back home, I'm an agriculturalist back home.
[Chuckles] So, I like to play with the ground and see my beautiful plants.
Bryan:
Having Brendell as a brother has made me into, I feel, a lot more of an open-minded and compassionate
person towards the subject of disabilities.
Because, you come across a lot of people who aren't really familiar with the subject and,
therefore, I've heard a lot of hurtful things about people with disabilities or just really
ignorant things.
So having him as a brother really makes you a lot more compassionate.
He's my brother and that's all that matters.
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