- I honestly never knew that someone could live this
well, this functionally, with half a brain. So, she's very impressive. (chuckles) - [Chris] What do you think
when your mom says that? - Mm, my family so caring about me. They all help me when I need someone. They help me with to buy food and clothes. - If somebody wants to be your friend, what should they do first? - What? - If somebody wants to be your friend, what should they say to you? - Ask permission. - They have permission to be your friend? - No, ask permission if
you want to be my friend. - It's pretty cool that you
are able to do this much with only half of your brain. You have half of what I have in my head, and you're able to do pretty
much all the things I can do. - Wow. - Yeah, so she had a functional
hemispherectomy in 2014, and it was to treat intractable epilepsy, which medications were not
able to control her seizures. So she was having hundreds
of seizures a day, and all throughout the night. It was causing a lot of problems developmentally and physically, and it was really dangerous the amount of seizures she was having. So the surgery cured her
epilepsy, which is amazing. She's a miracle, and she's
living with half a brain, and doing a really great job of it. Right, Mikisa? - Yes. - Yeah. - [Chris] Can you describe
what the surgery was? - Yeah, a functional hemispherectomy is where they disconnect the
two hemispheres of the brain, and remove a large part
of the damaged hemisphere. Hers was damaged from cerebral malaria when she was a baby in Uganda. So once they disconnected the, you know, the affected side of her brain, then it no longer was wreaking havoc on the other half of her brain. So then her healthy hemisphere was able to start
developing more normally. So, she was still significantly affected by the seizures before the surgery, but she's been able to make
some progress since the surgery and is living a much, much better life since having the surgery. So we're very grateful. - [Chris] How old was she at that time? - She was nine. - Do you remember having seizures? - No. - I don't think she
remembers much of anything before the surgery because when she would sleep, her brain would essentially erase itself. So she would just forget
everything that she had learned, and she really doesn't
have a lot of memories from before that time. - How can you tell if somebody's
gonna be a good friend? - Like, be positive by yourself. - They're positive about themselves? - No, I said, now, all friends are
different, and that's okay. But, it's really hard to transition when you go one place
to another place. Yeah. Wish I could have more friends today. - So you said, "All friends
are different and that's okay, but it's hard to transition
from one place to another." - Mm-hm. - Why is it hard to transition
from one place to another? - Because every morning on a school day, I have to sit on the bus, and I have to walk in the hallway, and people make loud
noises and talking. Yeah. - There is a lot of noise
at a typical school. So what is it like for you when you hear all the
noise in the hallway? - Stress. - A lot of stress? - Yeah. - Do you like it better when it's quiet? - Yeah. - How have you learned to cope? How do you deal with all the noise? - I mind my own business. - She has some sensory
processing challenges, and because she is only
using one half of her brain, it can get very easily overwhelming. - [Chris] Tell me about your dad. - Hmm, so my daddy, he packs
me a lunch every day. Yeah. - I what every day? - Pack me lunch every day. - Oh, pack you a lunch every day. Yeah. - It feels good to do that every day. - You like that?
- Do that every day. - [Chris] What was it like
when you first met Mikisa? - Well, for me it was love at first sight. I met her in Uganda, and she had been in a really,
really difficult situation. - How long was I living
in the streets for? - In the street... Yeah, in Uganda you were there for... So Mom met you when you
were about five-years old. So you were in Uganda
for about five years. - Oh. - Spending a few days with her, I realized very quickly
that I wanted to be her mom. So, I was single at the time,
and decided to adopt her. And then we moved back to the States, and shortly after that I got
engaged to my husband, Troy. - [Chris] What is your top priority for Mikisa as her father? - My top priority is to make
her feel that she's loved, and make her feel that she's included, and she's part of the family,
and she's valued. Yeah. And I always want that for her. And, you know, she's a
wonderful gift to us. - How long were you guys married? - We've been married 11 years. - Ooh. - (chuckles) Yeah.
- Mom. You're married for 11 years right now. - Yep. And we had three more kids, so we have four beautiful daughters now. - Oh. It's hard to keep up a lot of work. - It is a lot of work, but it's a lot of fun, too, right? - Yeah, I think I wanna be a mom. - One day? - Yeah. - Well then you have to be okay with the chaos (laughs) and the noise. - What's the chaos? - (laughs) You always complain about it. - Mom, I'm not complain,
I'm okay about it. - You're okay with the chaos? - Yeah. - That's good. - I think I wanna be a mom
and sell art like you do. - And sell art? - Yeah. - That's what I do. (chuckles) She wants to be like me. - [Chris] Do you admire your mom? - Mm, no. - Do you know what admire means? (mom laughs) - [Chris] Do you look up to your mom? Do you wanna be like her? - Yeah, I want to be like you, Mom. You have have all this personality. You get to do anything
more you have to do. - Thanks, Mikisa. That's really sweet. - I'm really try to tell you, you could do anything you want. - She said I can be anything
I wanna be. (laughs) - [Chris] Do you always tell her that? - I do, yeah. She has a lot of dreams. So yeah, I try to encourage
her to keep dreaming, but then also to keep
working towards the dreams. (Mikisa laughs) - [Chris] Tell me about
some of your dreams. - I want to be a mom, and
moms have to do a lot. I want to have my own kids. - You wanna have your own kids? - Yeah. - Okay. - Like, I want to be a mom. - What do I tell you
when you tell me that? - Like, do the dishes
or clean up your room. - I tell you, you need to first learn how to take care of yourself, right. - Why? I am...
- Because it's important. - But, mom, I wanna take care of myself. - Yeah. We're working on it,
right? There's a lot to learn. - [Chris] Is it easy or hard
to take care of yourself? - It's hard.
- Yep. - [Chris] What's hard about it? - The "properation." - What? - The help give me my... - Yeah. You need a little help, right? Getting dressed and
getting ready. That's okay. But you're working on becoming
more independent, right? - I want to be more independent. - Yep. You just have to keep practicing. - I don't take care of myself more often. My mom has to take care of me for me. - How does it feel when people
have to take care of you? - Stress. - Do you want to be more independent? - Yeah. I like independence, but I don't like my mom
getting me ready for every day. I wish I could take care of my own stuff. I don't want mom to do it for me. - I understand. When you're 17, you kind of
want to have independence, but it can be hard sometimes when you have a disability, right? - Say it again. I can't
hear what you said. - I said, I understand that you're 17 and you want independence. It can be difficult when
you have a disability and you need help from
your parents, right? - Yeah. I don't want... Yeah, but my mom had to do
it for me, and I don't... I do want to be independent, but I don't want my mom to
take care of myself every day. I want to take care of myself. - Yes. You're lucky to
have parents who help, but also you want to have
your own independence. - How can I find, how can I work? How can I be more independent
to myself, Mr. Chris? Give me some examples. - Thanks for asking a
great, great question. My advice is to listen to your teachers. Tell them what you just told me. - What you say? Say it again.
I can't hear what you said. - Tell your teachers that you wanna learn
to be more independent, and then make sure when
they give you advice and maybe create a lesson for you- - What's the advice? I don't know what that is. - Advice means if you tell your teachers you want to be more independent, they'll teach you ways
to be more independent. - Yeah, but how much, how can
I give it advice, Mr. Chris? Give me some more suggestions. How can I be more dependent to take care of myself every day? I mean, do everything I want to do. - I think the best thing to do is to take it one step at a time. - What do you mean? Give
me some suggestions. Give me more idea. - What is something you
want to do right now? - Get my own PJs on.
Brush my teeth by myself. - Well, let's focus on one small step. Let's think about brushing our teeth. What are you struggling with? Is it hard to pick up the
toothbrush? Is it hard to hold it? - I mean, it's hard to
get on the toothbrush. - Oh, to get the toothpaste
on the toothbrush? - Yeah. - Well maybe you could think of a way that that would be possible. An accommodation. I could bring-
- What's that? - An accommodation is a
way that you could do it. We could create something, or I would have to think
about it and brainstorm it. But I'm sure somebody
watching this video out there has already come up with a
solution to something like that. So I encourage those people to comment it so we could see it and possibly use it. But I love that you're sharing that that you want to put
toothpaste on the toothbrush. - Mr. Chris, how can I be more independent everyday at school? I mean, how be can I be more
independent at the school? I mean, I like being independent, but how can I build up
more independent struggle? I mean... - I think the biggest thing is- - How can I build up
more independent level? - That's a great question. I think- - Give me some suggestions, honey. - I will. I think the
biggest thing is attitude. I think the biggest thing, and the biggest way to
learn to be independent is to have a can-do attitude. And remember that you can
accomplish many things if you put your mind to it. - What a can-do attitude? - Yeah, good question. So like- - Explain that to me. - I will. A can-do attitude means that you believe in yourself, and that you believe you're
capable of doing things. - I don't believe myself. How can I believe myself every day? - Thank you for telling me that. I think a great way to believe in yourself is to have affirmations. So,
- What- - Do you have a question? - What's affirmation? - Affirmation is saying
positive things about yourself. So for example, when you wake
up you can look in the mirror and say, "I am smart, and I'm
gonna learn something today." - I don't say about that. - [Chris] Has your mom ever taught you about how your brain is unique? - No. - Yes, I have. That's one of our big
topics of conversation. - [Chris] What do you tell her? - I tell her that being
unique is beautiful, and that I love that she's unique. And we also talk a lot about disabilities, and having disabilities. She likes to point out, you know, the kids in her class, what
their disabilities are. And so we talk about her disabilities. We talk about her hand, and
we talk about her brain, and how she needs more rest. But then we also talk about how her disability makes her special, and that we love and value
her uniqueness in our family. - How can I be part of, how can I think happy thoughts in my head? - It takes a while. It becomes part of your routine. - Give me one suggestion. - Maybe you can set aside time each day. - What's that? - Settings aside time like before meals, before breakfast, before
lunch, before dinner, where you just say some
nice things about yourself. You could say, "I'm smart,
I'm talented, I'm capable." You could create your own affirmations. - Mm. Affir-who? - Affirmations. - What's that? - Just kind words to yourself. - I don't say kind words to myself. - Well, I want you to start 'cause you're an awesome person. - Maybe I could be positive to myself. Maybe I could think kindly to myself. - I love that idea. - I don't say, I don't say... Okay, let's say it together. - I am smart. - Give me another affirmation. - I am strong. - I mean, ooh, I had an idea. I am helpful, I am... - That's the perfect affirmation! You just made that one yourself! (laughs) - I know, I know. I wanna be positive to myself. - Every human being has
struggles and challenges, and but we're also so valuable, and to understand that about
each other is so important. - [Chris] What was it like to transition from just you, Troy, and Mikisa to having three more daughters? - Yeah, it's been a wild ride. We knew right away after we got married that we wanted more kids
because we could see that Mikisa has a very
outgoing personality, and she loves people. (Makisa singing) (sister giggling) - [Chris] What do you think
when your sister gives you a hug and she acts silly, and loving? - Oh, it feels good. - [Chris] What do you
love most about Gracey? - I have no idea. - [Chris] What do you
love to do with Gracey? - Doing puzzles and do
some coloring, Mr. Chris. - [Chris] What's your favorite
thing about your sister? - Well, she's energetic, and
she likes to tell jokes a lot and she's very good at puzzles. Very good. - Do you two ever do puzzles together? - Yes.
- Yes. - She's so fast, she can
finish it before I can. - I'm the puzzle master. - Yes.
- Puzzle master. - [Chris] What was it like for you to see her have the hemispherectomy, and then the seizures stop after that? - Yeah, it was almost, I
could use the term miraculous. It's very fascinating to
see the level of expertise that some of these doctors have. The fact that you can
literally cut into the brain, and do such a, you know,
dramatic procedure, and for someone's like quality of life to be that much better after you do that. - The good thing in Mikisa's case was that her entire right
hemisphere was damaged from the stroke when she was a baby. So the surgery didn't change
any of her functioning actually because she already wasn't
using that half of her brain. So there really wasn't
any deficits post-surgery that we hadn't already seen before. So she's never been able
to move her left hand, and her left leg has always been weak, and she has a field cut. So when she looks straight ahead, like half of her world is gray. - [Chris] With the hemispherectomy, when they detach the two hemispheres, do they remove the part that
was causing the seizures? - Yeah, so there's two different kinds of hemispherectomies. There's anatomical and functional. So with the anatomical they
remove the entire hemisphere. With the functional, they're still turning off the
hemisphere that's damaged, but they, so they're disconnecting it. They're disconnecting the entire thing, but they take out the
most damaged portion. So for her, it was about two
thirds of that hemisphere that was taken out. And the reason they leave some in is because there can be
some shifting in the brain after the anatomical surgery. So it can cause more issues with like the fluids in the brain. And so they recommend
starting with a functional. - She's hilarious, and she
likes to listen to music a lot. - [Chris] Do you guys have
a favorite song together? (Mikisa singing) (Gracey giggles) - I don't know this song. (giggles) Well, I think we like old songs. - What? (Mikisa singing)
♪ Hey what ya who ♪ (Gracey laughing) - [Chris] That's a classic. - Yeah. Like it? - [Chris] Did you just make it up? - Yes. - When she was younger, she would, every day was a different profession. So she wanted to be an
astronaut, firefighter, a teacher, a nurse, a doctor. Then once she had brain surgery, she wanted to be a neurosurgeon. And so I do try to keep it real with her. And I say, "You know, Makisa, neurosurgeons typically use both hands. So that's probably not
gonna be our best option." - Why not? - Because you know when you
have one hand that you can use, probably not the best to be
working in someone's brain. - Why not? - (laughs) This is how it goes. - Why not? - So then what I try to do
is when there is something that's a little more realistic, then I really encourage her. So for example, her dream to be an artist,
I think that's great. She's already an artist.
