Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Joshua (8), Other, Hamilton County


"I don’t want to burden Joshua, but at the same time I want him to know he is a part of his success story. "

  • A Parent's Perspective
  • Posted on 10/11/2012

 

I have a 7-year-old son with cystic fibrosis named Joshua.  I also have two other children who are older.  I think especially in the beginning or when Josh has a new challenge, he gets the attention.  I think my other children understand and I think they are a lot more empathetic in general. Maybe sometimes they resent the attention we give to him, and there are some things that aren’t fair.  We say, “You’re right, it’s not fair, but it’s not fair that he has cystic fibrosis.”  He is just a typical kid, though.  You would never guess, would you?  That’s what everybody says you know and good grief. He plays baseball and basketball and just runs out there and he just gives it his all, so.  He’s doing great. 

A huge deal is basically keeping his lungs healthy.  He’s chronic with MRSA in his lungs right now so he’ll always have MRSA in his lungs and he’ll have to keep up with that antibiotic so anything that he has to do for his lung health he’ll still have to do. We have to worry about it at school. The only thing he has to take right now at school is his Creon, which are his digestive enzymes. It embarrasses him to death because I remember one time he had forgotten his inhaler and so I showed up at school with it and he just had this mortified look on his face like oh don’t let anybody see this and this is when he was in kindergarten. 

Joshua is very athletic.  He’s very smart and makes straight A’s.  He’s kind of like his big brother: can’t find a sport he doesn’t like.  So that is great so he’s always out running around and we got a trampoline right after his diagnosis.  Anything that helps build up his lungs.  He does not let it slow him down. 

His teacher told me that she doesn’t know what it is but everybody is drawn to Joshua.  She did a little thing, you know, where they meet and stuff and they had to make a list of I think like, four kids that they had met or something and she said almost every person put Joshua’s name on their list. 

The thing I’ve learned about cystic fibrosis is finding balance.  I want to protect him but I don’t want to make him dependent, or where he stands out or people think they have to treat him with kid gloves.  I don’t want that and I don’t want that for him, either.  The open rapport has been huge for us as far as being in the school system.  In the IEP meeting we had the nurse, principal, people from the county and I just had them do a letter from the doctor’s office saying some of the things we needed to look out for, like a code orange day where he doesn’t need to go out and play because the air quality is bad or whatever.  But really, that hasn’t even come into play that much. 

There hasn’t been a whole lot that we have had to change around and he’s a sharp kiddo so he doesn’t have to have special academic things.  It’s hard and I think too that a lot of it is establishing that rapport with the teacher because you have to be able to give and communicate and they have to be willing to listen.  He’s doing well and our plan right now is to change over our kids in middle school to CCS.  I love the idea of them being surrounded by teachers who want them to succeed and who have a Christian worldview.  I want them to feel comfortable when they may not be comfortable coming to mom and dad.  As far as Josh, we are just praying through it every year and stuff too. 

In terms of healthcare, there are hopefully new things on the horizon.  Right now he takes 9 medications a day and does his vest.  You can see they work, though.  We went through a period before we got his diagnosis that I had him at the doctor 7 times in 8 weeks because I just knew something wasn’t right.  We took him to the allergy testing and found out he had all these allergies and stuff and they said he probably had asthma.  He was doing all these breathing treatments but you could still hear him wheezing from across the room.  All his energy was being used to breathe. 

I had the kids at the church one day for a home school co-op thing and I had Josh with me and I had taken his breathing treatment with me and given it to him.  There was one mom down there that said, “He still sounds like that right after the breathing treatment.  He shouldn’t sound like that.”  So I start tearing up and took him to the doctor.  It wasn’t until he started losing a lot of weight that they really felt like they had to figure it out.  It was the second day in the hospital when he was on oxygen that he really gave us a genuine smile because he felt so much better.  He could breathe and he was getting the nutrition he needed.  They figured out what it was, but he kind of had a rough haul for the first couple of months.  He was diagnosed at 8 months, but we probably didn’t notice anything until 6 months when he was doing all the wheezing and stuff.  I remember at the time calling the pharmacist because they had him on three or four different medicines and I hate giving my months-old son all this medicine.  That’s what he needs for this, though, and it works and he feels so much better.  We’re just so thankful for all the advances they’re making, you know. 

I’m going to encourage him to do whatever he wants to do.  I don’t want him to feel like he is held back by this.  Like I said, he’s got a pretty cool personality which I think will be a huge factor in his success.  I don’t want to limit him at all.  I just want him to do what he wants to do.  Of course, sometimes, when challenges come up it is hard to know how to handle it.  I don’t want to burden him, but at the same time I want him to know he is a part of his success story. 

As far as employment and housing, social inclusion and faith, he is very much involved in church.  We kept him home until he was three years old because we had to be careful about any kind of infection.  When he was three, we got him out of his bubble and he’s been at church.  He’s very involved in sports and around 4 or 5 we got season passes to Dollywood because we wanted this kiddo to be able to live.  We just do it but the cool thing about having a child with a disability is it really helps you prioritize things.  I know I don’t do it well all the time, but carpe diem.  We work hard but you really want to play hard.  I love it when we can go away for a week.  Vacations mean so much more to me now than just play. 

I think any disability comes with its challenges, but there are so many things to be thankful for because I think you realize even what a blessing life is, each day. 

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