Enthusiastic.
Powerful.
Supportive.
Mighty.
Very silly.
Funny.
Vibrant.
No limitations.
Positive attitude.
Mysterious.
All-boy.
Awesome.
Creative.
Playful.
He's never down.
He's always up.
That's Joshua.
That's Joshua.
He does not give up.
We knew absolutely nothing about cystic fibrosis when Joshua was born.
It was a huge learning experience for us both.
Cystic fibrosis is a disease that you are born with.
You inherit it from your parents.
You have to get one copy from your mom, one copy from your dad.
What it does is it messes up one of the channels that keeps all your mucus hydrated.
So you end up with thick mucus in your lungs and in your stomach and your intestines.
That in your lungs leads to lots of infections and lung damage.
And then in your intestines and your stomach it makes it really hard to absorb food.
It's very hard to gain weight.
So at the beginning of my clinic appointment I had to get something called a blood draw.
And they take blood, I get 10 vials.
So yeah that sucked but luckily I didn't faint.
Sometimes we can put on a video or I close my eyes or play music and close my eyes.
Because if you have music on you can actually feel calm.
We do somewhere over the rainbow.
It is a song that really calms down during my blood draws.
So I don't fight the doctors.
Well I wake up at 6.30 I take a shower and then I get ready for school.
I go to school, we do like lots of learning and recess.
Then I get home, sometimes play basketball.
My mom wakes me up and then I do something called a butyrol.
Butyrol opens up my lungs so then I can breathe better.
So I have to do two puffs of those.
Wait one minute in between each puff.
Actuavet, smooths the muscle.
Dulara, hypertonic, fins and mucus.
My vest shakes me so it shakes my lungs.
15 second break so then I can cough.
Ciprohepidine, Claritin, Sporinox.
A little pink pill called a mug.
I don't know what it's used for.
I have another medicine that I take every Monday, Wednesday and Friday.
Nasal Spray.
Every month we do at least something called Toby or we do casein.
All that takes about two hours.
I do it at least three times a day.
And when he gets home from school he has to do treatment and he can't go outside and play.
And he gets to the TV so not that cool.
And he gets all the video games he wants because he has to sit in a room for an hour to two hours
every time he does this for three times a day which is six hours a day of him just sitting on a couch
being shook around and it just doesn't, that fun.
We're slowly getting him to do the treatment himself which means that my mom could help us
and my dad could help me and my brother with all the stuff that we need help with.
When I get home from school I usually have to do homework because my mom always says so.
Then I go play with my brother, usually video games, or we go outside and play something.
This is too hot. Oh snap!
Oh snap!
I know Josh was since we were in kindergarten and we just asked each other,
want to be friends and he just said, oh sure, and then we became friends since the fourth grade.
We were encouraging him to do all these sports like run, you need to do soccer, you need to do basketball, baseball,
but he couldn't keep up and it was very heartbreaking to see him put everything he had into a sport
and he just didn't get to play or he never made a basket.
So he started Taekwondo and it was just like a matter of weeks that we saw this confidence boost in him
and he was like answering up in Taekwondo and he was saying things with confidence.
Martial arts has been something for him that he could participate in every aspect. There's no limitations.
When we started Taekwondo we had to go to the hospital so he couldn't get his orange belt
so we had to leave and go to the hospital for two weeks.
He was sad but he came back and gave orange belt, yellow belt and he gave him a belt.
I got the first ever leadership belt at our AP studio.
He got a gold stripe on his belt tonight. He was the first promotion to a leadership belt that I've ever done in 23 years
so that was exciting for me and he got that because he actually has learned and practiced
and demonstrated in classes what our 10 class management skills are.
It's just great because the family dynamics both in classes and also practicing at home
and just how they interact and support each other is really great. It brings families together.
In my opinion I think it's an important message that how much, and it's not just 6 to 7,
it's any product disease that affects families.
Well yeah, and the decisions you make.
My last doctor's appointment was pretty bad because I was crying.
I had to go to the hospital on Monday.
His numbers were low on his lung function and he got a bug and we need to fix it and we need to do it now.
And if we don't, it could do some damage.
Well we're going to do it now so it's not going to do damage.
I think it's kind of hard because for the first 6 months of his life they didn't even know what was happening
and now that they finally understand I think it's easier for them
but they still have to pay all the medical bills and make sure Joshua gets his treatment and his medicine
or he will not be healthy and have to go to the hospital.
My role as his big sister is probably, I just have to make sure he does everything
because he's active and that he has a good time here.
Usually we just have like a giant family night when he gets back because we're finally back together
because one of the parents have to stay at the hospital with him.
So I found this paper this morning when I was going through some papers
and this was a paper that he wrote for 4th grade that's titled My Greatest Accomplishment
and it says, my greatest accomplishment in my life so far is when I finally learned to roller skate.
I was so happy that I almost screamed and I was pretty fast
but I came in last place in the race and last place in red light green light
and also in Simon Says but I don't care.
I at least learned how to skate that night.
That was awesome and that night was so fun.
So when he got into Taekwondo and it was all about what he could accomplish on his own
like his confidence has soared.
I want to actually be a 5th grade black belt and own my own studio.
I love Taekwondo so much that I want to actually be a world champion.
I love Taekwondo so much.
