CP Awareness Day

In this episode of the podcast with catch up with our friends Dana Kramer and Levi Ervin (mom and son) from Georgia and Drake Box from the podcast, The Box Factor. We chat about what Cerebral Palsy Awareness Day means from the perspective of lived experience and what has been going on since we last talked two years ago on Episode 12 of the Raising Kellan Podcast.

Edited Transcript

Welcome to the Raising Kellan Podcast. My name is Marsh Naidoo and I blog at www.rasingkellan.org where we curate resources for parents raising children with disabilities. On today's episode, we are joined by Dana Kramer, Levi Ervin, as well as Drake Box in honor of Cerebral Palsy Awareness Day, which is happening on March 25th. As always, remember, the information provided on this podcast is purely educational, and if you are seeking advice for your specific situation to contact a trained professional.

Marsh Naidoo (00:46):

So guys we are having a mini-reunion. We did an episode about two years ago, and that was episode 12 on March the sixth, talking about Cerebral Palsy Awareness Day. And we have our people back. We have Levi and his mom Dana, as well as Drake Box that are just gonna kind of reflect and catch us all up as to what's happening in their lives and talk a little bit about what Cerebral Palsy Awareness Day means to them as well. So I'm gonna start off with the youngest. Levi, tell us how you are doing?

Levi Ervin (01:36):

Yeah, so I'm pretty chill lately. I moved up to middle school, so that's been a change, but I'm adapting to it and everything's been going pretty smooth and I've had to adapt to some things, but things have been going really good lately.

Marsh Naidoo (01:55):

And I see you really kind of big into robotics and technology. So what, what's happening as far as that, Levi?

Levi Ervin (02:07):

So I joined the robotics club in my school and their season just ended and I, and I just enjoyed coding games, so I've been doing that.

Dana Kramer (02:19):

You could talk about how the regions

Levi Ervin (02:21):

Oh yeah, yeah. I went to a region's tournament for video game programming and I won third in my age group.

Marsh Naidoo (02:31):

That's amazing. Levi, you're just being modest there. Dana, any other stuff?

Dana Kramer (02:38):

So modest because he invented, like, created a video game with two levels. He went to district for like his county one first place, then went to Regions and got third place and he's so chill. He is like, oh, I mean, it's no big deal. I'm like, Levi, he is amazing. We're so proud of you

Marsh Naidoo (03:02):

Dana. What's been happening with you?

Dana Kramer (03:05):

Oh my gosh, in two years, well, had another, had another kid. Levi's a big brother, now he is totally adjusting to that. He is the best big brother. S o I'm juggling, you know, special needs mom and a toddler, so that's exciting. I'm tired. 24 7 <laugh>. But definitely full of joy. Definitely full of joy. They are the best kid. So it's been a fair, I mean, me and the hubby are doing wonderful things are doing good. Oh, we're like maybe hoping to extend our home, get Levi like a handicap accessible bathroom, and so we've got some big things going on. Life's good.

Marsh Naidoo (03:53):

And Drake, what is going on with you Drake Box?

Drake Box (03:57):

Well, right now I'm trying to finish up my last year in university College, whichever you wanna call it. I set up my last semester of undergrad, so that's pretty exciting and nerve wracking all at the same time, but I'm excited to be getting into my career and just finishing up school and seeing where life takes me.

Marsh Naidoo (04:19):

All right. This is just open-ended, so You'll jumping at any time. We're just talking about cerebral palsy awareness here, so just whoever wants to go first, just go ahead and, and, and, and do your thing.

Dana Kramer (04:33):

Am going on a special needs mom cruise to The Bahamas, like mom's trip. We're just moms. Yes. It wasn't

Drake Box (04:43):

Like Marsh is like, where's my invitation? <Laugh>

Dana Kramer (04:46):

<Laugh>. It wasn't supposed to be on Cerebral Palsy Day, it just kinda happened, but it is gonna be a bunch of moms with special needs kids, so to be cool for us to sneak away. So Levi, he's got big man clans, like him and Ryan are got, me and Ryan are gonna go do something on plans, but they know they're having like a big man day fun day for sure.

Marsh Naidoo (05:11):

So how do those cruise come about?

Dana Kramer (05:15):

So, you know, that Levi used to, you know, be heavily involved in E S P. Right. And so these are e s p moms. These are just moms from, and we have a mom's group and we get together once a month. We try to like do paintings or dinner out or a gathering at someone's house, game night, et cetera. But we just kind of all get together and leave the kids and the husbands and we just step away. I think, you know, sometimes it's, it's very healthy mental health choices, you know, sometimes you need to step away so you can recharge to be the special needs mom that you need to be, you know, so it's, it's a really awesome group of women that I, you know, have really gotten me through some tough times. They're pretty awesome.

Levi Ervin (06:08):

What it means to me is it's a day to recognize who I am and to not only see things that would be good to work on, but see benefits from CP, which if you look for 'em, you can find them and it's about staying positive and about just appreciating who you are

Drake Box (06:29):

To piggyback off of him, I, I just wanted to say, you know, I think that day really allows me for a time to reflect on everything that I've been through regarding my CP and just seeing the progress that I've been able to make and then just seeing the lives that I've been able to touch with having CP and all the doors that it's opened. And it just makes me appreciate life a little bit more because, you know, it, CP makes us special, it makes us part of who we are and, and you just gotta embrace it and make the best of your situation. And that's what I plan on doing every day

Marsh Naidoo (07:02):

For me. Cerebral Palsy, the awareness day is basically about educating and empowering parents and kids and basically the community. And it's about us getting together to touch each other's lives and see where we at and if this is just all about that community and that support base.

Dana Kramer (07:24):

I definitely, like, I couldn't agree more if you guys, I told y'all what I was doing, but I didn't tell you what it meant to me. Stemming of everything, you know, what the boys said, what you said, but for me, every time this day rolls around every year, it brings like a sense of hope from a parents' perspective. Like, yeah, we did it another year down, this did not hold us back. We, you know, and I reflect on all the things that Levi did, and so it's kind of, for me, I, I see all those things and I definitely wanna bring awareness, but as a mom, it's kinda like, you know, a little trophy mark, like another year down, we did it, we're getting it done. It's a really emotional and important day for me as a mom. I'm sure you can relate Marsh.

Marsh Naidoo (08:17):

Yes, ma'am. Well, guys, is there anything that y'all would like to end off with before we sign off and maybe just a little promise that we'll check back with each other next year? Any last words before y'all go?

Dana Kramer (08:33):

Thanks for having us. It's really cool that we all get together and can just chat.

Levi Ervin (08:37):

Yeah, this is awesome.

Drake Box (08:38):

Yeah, I just wanna emphasize the importance of the friendships that we have, not with just each other, but that we have in the disability community. And, and I just wanna touch on the fact that I love that I'm able to advocate for us, for myself, for Kellan for Levi. It brings so much joy to my to my heart and it's not something that I really experienced all the time when it came to CP. So I appreciate y'all for that opportunity and thanks for having me. And

Marsh Naidoo (09:06):

Guys, thank you for your time. Everybody have an awesome CP day. Love y'all. You too. You too. You take care, hon. Bye Jake. Bye Levi.

Drake Box (09:18):

Bye.

Marsh Naidoo (09:19):

As always, thank you for listening along on the Raising Kellan podcast. Be sure to leave a rate and review on this podcast episode, and we would sincerely appreciate a share, but more importantly, we would like for you to reflect on what this day means to you. As always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.