Bold Like Cole

Chris, Cole's father shares the experiences that he and his wife, Connie have gone through over the years of raising a child with disabilities, who is now about to graduate high school.  I asked Cole recently if he was excited about graduating soon and he gave an emphatic yes, followed by how much he was going to miss football.  For years Cole has been the football team's manager from middle school to his senior year.  Some of my favorite memories have been watching my boys and Cole and his brother grow up on the ballfield, whether it's baseball or football.  Another favorite memory was listening to Cole and my husband pick at each other over their favorite NASCAR drivers and make "bets" over who was going to win. 
Chris, thank you for delivering an honest, positive, uplifting message of the ups and downs of Cole's procedures and the importance of faith and also the gifts and perfect timing from God.  In addition, thank you for introducing us to Boston Children's Hospital. Here is the FB page set up for Chris and Connie's charity and also a link to Bethel Lutheran Church's donation page if you would like to donate to Bold Like Cole.  Be sure to specify what your donation is for in the note/memo section. 
https://www.facebook.com/boldlikecole?mibextid=LQQJ4d
https://bethelms.org/give

Transcript

00:00.70
astockov
Okay, all right today I have Chris Abernathy with us welcome to another episode of beyond existing. Um Chris you were 1 of the first people that we met when we moved here it was when we were playing optimist baseball and I noticed Cole. Out there and ah when I first saw cole I thought of my uncle Johnny and I've told you and Connie this many times that when I've I've gotten to know y'all and just from being around Cole. It feels like I got to know my uncle. Ah, what he was like during my childhood because they are just so much alike and um I've got Chris on here today audience to give his testimony of what it's like to raise a special needs child. Um, so Chris if you will. Ah, can you tell us how you and Connie Met or when you guys got married.

01:04.13
Chris
Sure yeah, we actually we actually met a long time ago. We met when we met we in middle school so we played met when we were about 11 or so and um, went to middle school together and.

01:09.56
astockov
Um, and.

01:19.98
Chris
Ah, what used to work was we went to middle school where went to separate high schools so we kind of were apart for a few years and we started dating when we were seventeen years old or juniors in high school and kind of really been together ever since we got married. And 2003 after knowing each other for or being x I guess after going together and dating for about probably about 7 years so we dated we married in 2003 and in 2005 we had our first child we had coal.

01:56.60
astockov
And.

01:57.51
Chris
Is our oldest. Um and you know he just turned 17 So it's it's kind of gone by and a flash but not here. but um but yeah it's ah it's been a long adventurous journey.

02:10.38
astockov
Yeah, it has so how old were y'all when Connie became pregnant with Cole.

02:20.50
Chris
Um, so we would have been probably about 23 yeah 23 24 um you know and he was born when we're both I think 25

02:23.96
astockov
Okay, good.

02:37.31
Chris
And um, you know a couple kids not knowing what to expect about being parents in the world and so um, so we were you know we were young. We didn't really.

02:37.58
astockov
Ah ha.

02:40.72
astockov
Yes.

02:51.70
Chris
Know a whole lot about was going on and everything you know we thought hey we bring us baby home. Everything seems great and then you know I guess about six months in we found out that he had had some some um, some things going at birth and that was where the journey began.

03:07.49
astockov
Yeah, yeah, um, so can you explain you were telling me that at three weeks left to go in Connie's pregnancy something happened. Can you explain what had happened.

03:19.70
Chris
So we um, she had her regular doctor's appointment. She was going in for her I guess at that time there were weekly visits and she was having some high blood pressure and and she had some swelling and she had um. Basically gone in for a visit and the doctor said hey let's just go and see into the hospital. Let's just get some tests running checked out and so she called me I was I was ah at work I was at the school with the time and so she made it so it was just just kind of routine tests. We're gonna go do and. Kind of when I got there. We were kind of that's when we kind of figured out hey it's gonna happen today. So um, we had. We had gone through and what had happened was coal. Um that day once we got over there. Um, they kind of told us that we're gonna go ahead and go into a c-section today. Um, and Cole's heart rate had dropped 2 or 3 times during that little span of a couple hours of being there and and you know looking back. It was. It was more of an emergency c-s section. Luckily the doctors were really good about staying calm or else you know don't know how that would have gone. But yeah, that day was it really was a calm day up to that point. Um, and then um, you know we saw his heart rate dropping some but.

04:33.00
astockov
Move.

04:46.71
Chris
Um, we didn't really think much about it because we didn't know and so that's kind of what led them to do that emergency c-section that day.

04:53.88
astockov
Yeah, now you told me that delivery went well. Okay.

05:00.81
Chris
It did it did there were no complications on either end. Um you know Connie was fine. Cole was fine. Um, really no signs of anything at all that had gone on and really he was.

05:16.55
astockov
Yeah.

05:16.85
Chris
He was a healthy baby boy. Um, and for the first couple days as we were there. There was really no signs of anything. The only thing that happened was he did fail his hearing test and I guess it was his right ear. Um, the first time.

05:33.79
astockov
Got her.

05:35.51
Chris
But then you know he ended up passing before he left So no for us. Everything seemed okay and ah normal. We didn't know any different.

05:41.96
astockov
Yeah, yeah, yeah, does he still struggle with that right ear or.

05:47.87
Chris
No, and no I mean he's like every other teenage boy he hears What he wants to hear I think you know? Yeah yeah, but I'll tell you it's he has not had any issues with hearing.

05:53.20
astockov
Yeah, exactly yeah, especially when it comes to chores. Yeah.

06:04.74
astockov
Ven us.

06:06.34
Chris
Um, you can't whisper around him because he's gonna catch it. But no I Really think that that day at the hospital was just kind of a fluke for whatever reason he just he just didn't pass but hearing has never been an issue for him.

06:11.75
astockov
Yes. Okay, so when did y'all feel like something was wrong or the doctors figure this out.

06:26.87
Chris
So we had gone on. Um, really for you know, the first few months and didn't really he was a I guess what they call Colicky baby He he was fussy but but you know.

06:37.15
astockov
Right.

06:42.86
Chris
Talk to people and they'll just say some babies are that way you know and we didn't really have anything that led us he was eating fine. He was he was you know everything was fine. He just see we get a little fussy and but um at six months we went to a checkup and.

06:43.68
astockov
Yeah, yeah.

07:00.42
Chris
The doctors. That's when the doctors they noticed his right hand and right arm just weren't acting the same way as his left was and you know Connie and I felt bad because we didn't notice it. But I guess we just weren't you know we weren't looking for it. Um, and and they were looking for it. So.

07:07.31
astockov
Here.

07:19.98
Chris
So they noticed it and and they had some concern and when he was six months old that's when we kind of had our first um, our first ah referral to go have ah an mri done.

07:33.16
astockov
Okay.

07:36.27
Chris
So we went I cat scanned in our I so that was when we first kind of started and and noticed something.

07:42.40
astockov
Okay, what did they notice in the mri.

07:48.43
Chris
So when we got the results back of the mri that is when we find last when we found out that he had had a stroke. Um so that the mri showed that he had a stroke on the left side of his brain. And that that was what was causing some of the cause causing some of the the physical abilities on his right side you know and as we would go on and do more tests. We'd find out there was more but that's kind of what the first diagnosis was that we had found out and.

08:12.54
astockov
And then.

08:23.82
Chris
You know we asked a thousand questions but no one could really tell us when it happened. Um, you know what caused it they said you know his heart rate dropping could have caused it. It could have been strained during during the c-se and that we don't know. But. Um, whenever the case was was or whatever happened it. It was that he had a stroke sometime during during that period of of of given birth there.

08:44.19
astockov
Anthony.

08:52.40
astockov
Yeah, yeah, um, so you were telling me also about his crawling.

09:04.52
Chris
So yeah, um, that's another thing that we didn't really think about he scooted everywhere. He was mobile but he was scooting and you know he's moving my my son's moving. He doesn't really think about how he's moving. He's getting there and doing things and.

09:11.12
astockov
Okay, ah her.

09:15.44
astockov
Right? yes.

09:21.90
Chris
But he never would crawl and to this day he has never crawled he he never did um and that was a sign also that I guess we could have saw but the doctors talked about and it was really he never crawled because he couldn't hold himself up with his right hand. Um, you know.

09:27.70
astockov
Um, with miss.

09:37.29
astockov
Is it.

09:40.85
Chris
You know later on he but he was diagnosed as having cerebral palsy and with that um you know a lot of people can hold their hands flat and put it down Cole never has been able to do that so not being able to crawl was another sign to the doctors that um.

09:57.46
astockov
Okay.

10:00.66
Chris
That that kind of led him to to you know believe that diagnosis and then you know eventually diagnosed him with Cerebral palsy.

10:08.42
astockov
Yeah, yeah, um so tell me about your journey with neurologists.

10:16.90
Chris
So yeah, that um, that really started out for us. You know, well for Connie and I it was a scary situation because they're thought out neurologist and you're you know you got a 6 seven month old and you know you're really you know. Just wanting to have ah a baby and not have to go to these appointments but the neurologist was a scary time. But um, you know we've seen so many over the years but the very first appointment we had was in Charlotte and so we get to the neurologist and ah he is reading I guess he had already read the scans and. Done everything and and was you know was preparing for our visit and we got there and he walked in and the and the doctor we're hol I think Connie was holding cold and we were sitting there and he was basically like so where's col at. And you know so well this is cohered. He's like well you don't have another child and no this this is this is Cole and he was in amazement he said because the mri just I just saw I was expecting to have a child in more of a vegetative state I don't know if that's the right word but just really not what. co- was he was expecting it to be a lot worse. Um, and I think that's kind of when we realized that the situation was worse and maybe we thought it was and that that we were fortunate because it could been a lot worse but but that first doctor when he walked in there he was he was expecting someone different than.

11:28.18
astockov
Um, and and.

11:44.57
Chris
Than the coal man we have today.

11:44.97
astockov
Yeah, yeah, can you share with the audience the motto that you and Connie had going through this.

11:57.45
Chris
Man you know you know we've always, um, you know we've so always said be strong and courageous. That's one of the verses. We've always always use and we still use it today. You know everything we talk about is Joshua one nine and be strong and courageous and.

12:05.42
astockov
1

12:13.92
Chris
Yeah, you know we've we've gone through that and I would like to tell you that we felt that way from day one and we were you know all about putting in the Lord's hands and we were but to say that there wasn't some maybe some some anger and some some uncertainty starting out.

12:23.80
astockov
Is it.

12:32.67
astockov
Yeah, yeah.

12:33.49
Chris
You know, um I would be lying if I said there wasn't you know? Um, but yeah, we've tried to always um you know for coal we've always said that we're not going to listen to you say I can't and I don't I feel by news coal today that they would probably never hear him say that you know, ah, he just is. Ah, he just does things and I'm telling you to this day I'm not sure the the kid knows he has a disability. Ah yeah, ah, but for Connie and I it was. It was tough going out but we've we've always tried to. You know we were forcement. We had a good.

12:53.52
astockov
Oh I agree I Totally agree.

13:11.10
Chris
Family and a good church and community to lean on but we always tried to hold that you know being strong being strong for coal being strong for 1 another? um and that's kind of what we've leaned on a lot.

13:23.30
astockov
Yeah, yeah now so he had a hard time crawling. He would scoot. Um, what were the different therapies that Cole underwent.

13:33.50
Chris
So once we started with you know we went through our first mri and we kind of found out the diagnosis and we went through through that we basically had talked to those guys and said that you know it was gonna be good for him to start getting. Physical therapy and occupational therapy just because he was not able to do some things in his own. He did get to a point where he was pulling himself up but he couldn't walk. He couldn't balance so when Cole was probably oh I started young one and a half or 2 he started getting physical therapy. Um, and occupational therapy. Um, so you know physical therapy was a um physical therapy was a rough go for a while I'll never forget. Um, you know we were we were getting we we got a video one day Connie and i.

14:19.88
astockov
Okay.

14:30.30
Chris
Of Cole just bawling and screaming but it was the first time he'd ever walked. It's like he he I don't know why he was crying about it. But um, it was ah it was just something that that he just that's how he got through therapy. You know we we kept up we apologize to his therapists I don't know how many times.

14:32.10
astockov
Yeah, oh.

14:50.20
Chris
He would fight through it but physical therapy was rough on him I Just don't It was a huge help but he just he did not do well with it at all. Um, but the physical therapy and occupational therapy really started at a really young age. Um.

14:59.88
astockov
Um.

15:06.25
Chris
And he he continued that for a long time.

15:07.65
astockov
Yeah, so spiritually how did you and Connie deal with having a special needs child.

15:16.53
Chris
Um, well you know I think with everything I think people have their ups and downs and we were the same way. Um, you know we were able to.

15:31.51
Chris
I'll be honest early on it was hard we but we did a lot of being angry at times and we would ask why a lot you know, but you know we had a lot of moments where it was kind of like it's almost like the lord was like hey you know I understand how hard it is but.

15:36.86
astockov
Um, yeah.

15:51.26
Chris
You know it's like eye opening moments of you know I'm here I'm here for you So we would have those and and we would We would lean on each other a lot. We had a lot of supported church. A lot of supportive family and friends. But you know our um, our church did stick behind us and that helped us in our faith quite a bit.

16:08.54
astockov
But who.

16:10.37
Chris
Um, but ah for the first 2 or 3 years I think it was a lot more of why and anger you know and as we as he got older and we got through it and we realized that.

16:19.60
astockov
Yeah.

16:26.46
Chris
You know, maybe Cole's not gonna do the same things that every other kid in this world might do um he is a very special kid and and can do whatever he wants to do so those first few years were hard but but as we got through it. You know we did. We did lean on a lot of support from the church and they helped us.

16:45.25
astockov
Um, oh yeah, yeah, that church family is just so important for sure.

16:45.29
Chris
And it helped us get through it. And yeah, and we've been like said we've been very fortunate in that regards just you know and as Cole got older. You know I mean I don't mean just recently I mean 5 six years old he he is a very personal kid. He's hard and he's hard not to like and I think you know that that helped a lot to. We had a lot of support and you know he would. He don't meet a stranger so you know people would.

17:07.80
astockov
A yeah.

17:20.22
Chris
Um, people would always come and and want to talk to him and talk to us about him. Um, and you know I think I'm finally Chris and I'm not col's dad anymore every time we would go somewhere you know Facebook was starting up so people were starting to see things and.

17:28.26
astockov
Yeah.

17:35.19
astockov
ah ah yeah oh yeah, and ah I think it was last year he and Jake had pe together and Jake would always come home with a cold story.

17:36.82
Chris
And but hey your're your cos dad I saw Cole your koan.

17:46.47
Chris
I Don't doubt it I don't doubt it. Everybody's got cold stories.

17:52.16
astockov
Lots of times it involved girls doing work for you.

17:56.22
Chris
Well colt cold cold came home one time with a notebook full of notes and I said you didn't write this I said who wrote this for you.

18:07.22
astockov
Yeah, he's a charmer for Sure. Ah, all right? So your faith was tested yet again. Um, since he did have a stroke and it ah affected his brain. And you told me that his seizures started. Could you talk about his seizures.

18:28.17
Chris
So yeah, when as seizures started Um, you know we found it started kind of just as a staring off you know and and looking back. The mess started sooner than we thought. But.

18:36.80
astockov
Okay.

18:43.61
Chris
Plug when he was 4 around 4 years old. We started noticing the end he was having seizures um and we went the seizures kind of started from just kind of staring off to where the seizures made him fall. He never had the ah. Grandma's shaking seizures but he would just he would just fall. Um and we went through and I can't tell you how many times I dove across a living room trying to catch him or or something um, you know.

19:12.56
astockov
End with.

19:17.80
Chris
When he was in kindergarten he actually had to wear a helmet to school just because you never knew when he was going to fall. But that's kind of when his seizure started when he was 4 or 5 and that was a I think that was early on the hardest time for Connie and I is is having to control that you know. Disability was hard but I think the hardest those first couple years of seizures were what were what I was talking about what were the hardest and you know we went through a lot of neurologists we started in. We started in Charlotte we went from Charlotte to Hickory Hickory to Chapel Hill Chapel Hill to Boston and now we're at wake forest so we've kind of been a little bit everywhere. Um, but the the the seizure the seizure time that period was probably the hardest that we went through not just for us. But for him. Um.

19:56.20
astockov
Um.

20:08.94
astockov
In here.

20:12.10
Chris
Expect as he was getting older. Um you know he just um, he never knew when it was going to happen to him and he would just it would hit him and he would fall so the seizure when they started when he was about 4 that was that was kind of a turn that we weren't expecting. We knew of the disability and we knew.

20:16.52
astockov
Yeah.

20:29.89
Chris
That that was going to have his own challenges but the the seizures kind of put a little wrenching things right? there little kink in it and we just had to kind of go from there and luckily that so that journey it did take us to Boston which ended up being the the correct answer but it was ah. It was a rough six years there of dealing with that and and watching him go through it.

20:49.55
astockov
Yeah I know you told me that his seizures were so bad that he had to wear helmet with.

20:56.14
Chris
Yeah, yeah, well the 1 reason we had to do that is because he had a seizure at school one day and fell and we had to go taking to the merge room and get a rock pulled out of his head so that was kind of hey we're just gonna do this as a precaution.

21:06.14
astockov
I.

21:12.46
Chris
You know and and his teachers were great. They really were but you know it's hard to when you have 20 kids you can't just stand beside that one all the time and and I know they they did everything they could for him and we appreciate everything they did and but he had to do that just as a safety precaution and luckily he was young I mean.

21:27.75
astockov
In here.

21:32.61
Chris
He was people would you know pick not pick with him in a bad way. But it was kind of hey it's cool cool. You get to wear helmet. You know so he didn't think of it. Ah as a bad thing so it worked out for him.

21:40.10
astockov
Yes.

21:46.37
astockov
Ah, yeah, yeah, it'd be easier when you're younger as opposed when you're older for sure. Yeah, so what were the treatments that were used to help control the seizures.

21:51.45
Chris
It is yeah it is.

21:59.69
Chris
So obviously we start out first with medicine we tried I I don't know it seemed like a hundred medicines we tried obviously it wasn't that many but it just seemed like we're trying a new medicine every month so that was the first that was the first. Step and it's really trying to find that right medicine that's gonna fit for each individual cause and you know we didn't find the right one early on and we found one it we thought was kind of working but it made our nice sweet little coal into just one.

22:37.68
astockov
Oh.

22:38.11
Chris
Pain the beer around it just changed his personality and it made him angry and you know this like do you try to get the seizures cleared up or do you want your child back because that just wasn't that just wasn't our goal and.

22:51.60
astockov
But from.

22:55.50
Chris
So we kept we we took him off that and kept trying some more and um, you know, just the medicines didn't work and we tried so many different kinds and I guess when he was about 8 we we were told about something called a. Vagal nerve stimulator and that vns device is basically something that is battery controlled and you pull it a little device that goes in your chest and its job is to send brain like electrical waves to the brain to help control seizures. And it did some. It didn't completely control them but it did help some and that that vns device was really our last step our last our last step to try to stop them before we moved on to brain surgery. And that was kind of the discussion we had had with our neurologist in Chapel Hill at the time is we've exhausted all our medication opportunities. The vns was kind of that next step before we talked about having the brain surgery and we um when we got to that point that it that it. Didn't really help we we had to make the decision and we we decided on starting the process of seeing what that brain surgery was going to include. Um.

24:16.34
astockov
Yeah, now you told me the chapel hill neurologist. He did not think that Cole was a good candidate right.

24:27.93
Chris
So what happened at Chapel Hill was the first guy we talked to was his regular neurologist and he said you know it was one of those where if the surgeon would have taken place in Chapill he was not going to do it so he.

24:35.14
astockov
Oh.

24:45.99
Chris
Us to the lady that would have been doing that surgery. We did some tests with her and spent some time with her and then she came back and said I don't think co is a candidate for for this surgery and so we went back and had our next meeting with our regular neurologist and he.

24:47.14
astockov
Is here.

25:04.98
Chris
He basically said I'm not so sure my colleague's correct. He said I do think Cole is a candidate. Um and we went through a lot of conversation with him and through that conversation. He basically said you know you got a couple options he said but I think. That your options are not going to be here. He said we need to get coal somewhere where they can do the in-depth testing that's needed so he gave us a few options and told us maybe his recommendations and we went did a lot of research on our own and. Boston was kind of the place that we felt good with and he felt good with it. So he kind of wrote us a reference to get us into start having testing done up there in Boston.

25:41.43
astockov
A.

25:51.40
astockov
Okay, all right now y'all went up to Boston and then what.

26:00.62
Chris
So as we got to Boston you know we went up the very first time we went um, you know we just had to have a basically had have 2 tests done and those were 2 initial tests just to kind of really.

26:05.75
astockov
Is.

26:19.18
Chris
Don't say dig into his brain but that's kind of what they were doing. You know we were they had looked at the test we had done before you know and co up to that point had probably had 6 um Mris and probably a dozen eegs and they had all that testing but they wanted to get their own information. You know so our. Our journey started with our first trip of just having testing done and then we met with Dr Tachioca which was going to be our neurologist in Boston for the time we were there and at that point. We had not made a decision on surgery and it was and I think they knew that it was just we were we were going through the process of determining if it was going to be an option and and how that was going to go about the the good thing about Boston was. We were Chapel Hill and I know they have great doctors there but they were talking about brain surgery like there was only one option of a brain surgery and we get to Boston and Dr Takioca was like talking about all these different options. So.

27:30.10
astockov
Aha.

27:31.32
Chris
It was it was kind of opening to us to realize that we had gotten the right place and that we felt like we felt really good about where we were just because it was and it was also a place that deals with this on a daily and weekly basis. The lady in Chapel Hill while she might have been great. She had only done like 2 of those surgeries before and co was just gonna be like the third or fourth one and just didn't feel comfortable about that. But once we got to Boston you know we realized that these guys are are really good. Um, so that's that's kind of where we were at and.

27:55.39
astockov
No new.

28:06.80
Chris
I said we did all those tests. Um and that it was.

28:10.10
astockov
Now What was the name. Ah, in case, anybody wants to check this place out. What is the name of the hospital or the okay.

28:17.97
Chris
So we just went through Boston Children's Hospital um and they are just such a great place. Not just from the standpoint of great doctors but you know just making you and your child feel. Feel at home and and feel good about it. It was um, it's just a really good place and you know we um and I think I told you this and I may be skipping ahead a little bit but the 1 thing that helped us out there was we were going through. You know we had gone through all these different. Procedures to to um to see where Cole was at at all these different places and going through all these medicines and um, we before we hadn't made the decision to go to Boston my sister in law was in morsel one day and she oh okay.

29:05.96
astockov
Oh I was just getting to this. Yeah I was I was just about an ask you.

29:12.36
Chris
So I am jumping a gun a little bit but so she was at a Starbucks and she happened to come across a guy that's a pharmaceutical rep never met the guy didn't know anything about him and um, you know they got the talking about coal. And just talking about the seizure medications he was on and he was like yeah you know those are there. You know those are some we deal with and then she had basically said well you know there's an option of surgery that he may have to end up going and that might be the route that they have to go and so um. As they were talking about it. He said well he said if that's the case there's 2 places you want to go he said in 1 on was some place in Miami Florida and I can't remember the name of it and he told the surgeon and he said or you want to go to Boston Children 's hospital and go to Dr Joseph Madden so like well you know we felt like we're in the right place just by this guy and um so went through and we were up there and so Dr Takioca is our neurologist and once we decided that brain surgery was going to be a pretty close option and we were going to go that route. He said well he said we need to get you in touch with a neurosurgeon he said and Dr Joseph Mason will be the 1 doing the surgery and we're like hold it on a second. So. It's like 1 of those things where you know this guy that doesn't know anybody any of us that my sister in elites in Masville.

30:32.72
astockov
Oh.

30:40.64
astockov
Right.

30:44.93
Chris
Says that we need to see Dr Joseph Madson and then we find out that Dr Joseph Matson is his brain surgeon. We didn't seek him out. We just happened to be the guy and those are some of those moments that that we talk about and Connie and I talk about of like you know.

30:50.48
astockov
Yes.

31:00.88
Chris
We stayed angry at times we asked why at times and you're you're sometimes like Wow it does he even hear us is the lord listening to us and then sometimes just like he does stuff like that to kind of smack in the face and say hey just if you'll just listen and and stay close to me I want I will take care of this for you.

31:10.60
astockov
Yes.

31:17.55
astockov
Here.

31:19.48
Chris
You know and that's just one of those times where I said we didn't seek out Dr Joseph Matson and we had no idea who that man that my sister in law met is but the fact that he said that that's who you need to go to and that's the name that came up was just just The only god can put that together and.

31:38.20
astockov
Oh I know I can't get the smile off of my face I Just love stories like that. Yeah, so um, what was the surgical procedure.

31:48.73
Chris
So he had something. It's called a right I want to miss it. It's like he affect himmo foretomy or something basically for as bad as I made that sound what they did was they can disconnected the left side of cold's brain. From the right side of his brain and after all these tests were done. They determined that the only thing coming from the left side of Cole's brain was seizures. Um, the only concern we had and they had was.

32:26.42
Chris
While seizures is the only thing that's really coming. There may be some pieces that they disconnect that could affect like his range of motion or some of the stuff that he had that was useful could could change it said it could change his personality. It could change some little things.

32:38.14
astockov
And he.

32:45.75
Chris
And they couldn't tell us that they said everything they've done through all the testing they don't see that happening. They don't think so but they couldn't tell us for sure that that wasn't going to happen so you know basically they told us that they felt like coal everything that Cole could do. That the right side of his brain had learned how to do it and that look this is where the stroke was fortunate in this case, the stroke since he had it at such an early age. His brain was be able to reteach itself to do everything on the right side.

33:17.89
astockov
Um, a.

33:20.50
astockov
Oh my gosh.

33:23.55
Chris
So everything that you know he does have you know with a cerebral palsy. He does have issues with his right side his right hand? Um, but basically everything else was taught he does with one side of his brain and.

33:38.68
astockov
And.

33:42.63
Chris
Um, so we went through and obviously when they tell you that you don't want to change your child's personality but you don't want him to keep having seizures So we we made the decision to go forward with the procedure and they went through and disconnected.

33:50.89
astockov
Rot.

34:00.10
Chris
The left side of his brain from the right side of his brain.

34:02.42
astockov
Wow and that was 2016 is that right? Okay, all right? and.

34:08.12
Chris
Yes, yeah, he would have been 10 at the time. Yeah, it was early 2016 nice I got back. It was in October of 16 So yeah, he had to he had just turned 10 Yeah.

34:22.72
astockov
Okay, all right and something happened right? after that surgery and y'all were very deflated.

34:31.76
Chris
So we had the surgery airby tells us it's a success. Um, which I mean I guess it was you know, um, you know we spent 10 of the longest hours of our life in a waiting room waiting. Um, to see what happened you know you'll get your hourly updates and but um, but you come back and Erby says it was successful. They felt really good about it and you know we spent a couple days there in the I see you and then we got moved to a room and everything was going fine. You know Cole got up and walked which was a really big step for them in that recovery process. He walked like I guess two days after I see you three days after surgery he was at walk in which was a really big deal. Um, which.

35:22.42
astockov
Okay.

35:25.85
Chris
Doesn't surprise you if you know anything about coal. He's not just gonna sit and take it. He's gonna move on. But um, we we got that and you know we were kind of wrapping up. We were about 7 or 8 days in kind of thinking we're getting ready to leave the hospital and then he had us had another seizure.

35:27.54
astockov
Yes.

35:44.34
Chris
And it was really just you know did we just put him through all this for him to have no difference. Um, so then we had to kind of go back and they had to hook him up to an eeg and had to.

35:52.17
astockov
Here.

36:02.50
Chris
Do some more tests and and um had to up some medicines and you know we went through that and you know they still didn't feel like anything was wrong. We we did get some conflicting stories the neuro neurosurgeon Dr. Matson had said well. Sometimes it's just a matter of the nerves. They just got removed. They could still be not completely I don't think dead's the right word but they might still be making some signals in there. Um, the neurologist was more concerned. He thought that maybe it meant that it wasn't going to be a success.

36:30.90
astockov
Right? Ah huh.

36:40.64
Chris
But we so we went that and you know we moved on and and you know it was just that one seizure there and so we got discharged a few days later and we ended up getting a had an apartment that we had rented for the 3 I guess four weeks that we were there and.

36:59.56
astockov
Ah.

37:00.63
Chris
We got back to the apartment and we had fifteen days I think we had to stay there or maybe just maybe just two weeks um and we got back to the apartments we were there for a day going great and then like the next day he has another seizure and that was that was the. First of November I think because the end of October with surgery you know somewhere the 1st november is when he had that one you know so we obviously we called the hospital back and you know it was just kind of a we need to wait and see what's going to happen. Um. So you know then obviously as a parent you get in the you know you're angry. So I guess you got to find somebody'd be mad at and you know and done unfortunately I don't think I'm the only person that ever did this, you're blaming god no why? Why would that happen. You know.

37:49.66
astockov
Yes, yes, why did? why did we do all this. Why did we go through all this. Yeah.

37:55.65
Chris
Yeah, yeah, you know and and you're seeing coal and you know that was a rough day. Um, but fortunately seven years later that was the last season he's had so.

38:01.66
astockov
And his.

38:11.20
astockov
Whoo. Don't you you know I Wonder if it was also just the body adapting to.

38:17.90
Chris
Well and we've talked about that and like I said the neurologist and the Neurosurgeon had some conflicting things. The Neurosurgeon did feel that way. Um, even when we went back for our follow-up visit. Um, a couple months later he still felt like.

38:24.55
astockov
Um.

38:32.80
Chris
We taught him there's been no seizars. He still felt like it was just a the brain had gone through this traumatic thing you know it was still just kind of the brain and the body were still just trying to get to its new norm I guess and so while it was a ah scary time.

38:44.71
astockov
He.

38:51.22
Chris
It does seem like it was kind of what he was saying and it's kind of gone back to where you know like I said that day in November was pain goess not I'm pretty sure it's November Sixth was the last day he's had a seizure. So um, fortunately.

39:02.60
astockov
Yeah.

39:08.78
Chris
You know we have not had to have that anymore. He's been able to come off some medicines. Um, so you know I'll say that was a long that was a long three and a half weeks in Boston that day for surgery. Um, but you know looking back. It does.

39:08.80
astockov
I hear.

39:26.91
Chris
Do feel like it was the right decision and I think it's been the best for Cole and I think ah, the decision Connie and I always struggled with was being selfish. We don't want to put our son through that you know, but at the same time we kept saying. We. We can't be selfish. We don't try to do what's going to be right for coal in the long term and if that was going to be right for him in the long term then that might be what we need to do and fortunately it's worked out so far.

39:46.30
astockov
Yeah, yeah, yeah, we all were just being protective. You would what you know most parents would be.

39:57.89
Chris
Yeah, yeah, and it it we were it was just it was just scary I mean at the same time Connie and I were first time parents and we didn't know what we were getting into.

40:03.50
astockov
It is scary. Yeah, yeah, exactly? Yeah yeah, that's right, all right? So you told me coal hated eegs but there was a special god named Michael. Can you tell us about that.

40:21.94
Chris
So one just one of the times we were at Boston and he was getting his e and and he hated it just flat out hated it. Um and he was up there. We were in the room he was getting his eegs on. Just screaming just crying I couldn't control him kind of couldn't controlling so this guy comes in and he just kind of talks to Cole and they start talking. He's he's calming down and you know his name's Michael and he's he's in there working with Cole and. You know it was just I don't know it just this magical guy comes out and can and your son's kind of calm for the first time in the last fifteen minutes of screaming and you know we um you know very appreciative and and. You know we got some pictures with Michael and Cole there and um, you know it was ah just a great time It's the first time he's ever gotten an e g on if out really just just being really It was almost to the point they were going to have sedating to to get it on. Um.

41:30.70
astockov
Um.

41:32.15
Chris
But luckily this guy shows up and and and really was just the first time he had ever calmed down enough to do that and so Michael was there and you know we end up getting done and going back to a room there and we're trying to find you know we were just going to thank him because we didn't get a chance to talk to him right there and. We're gonna talk to him and apparently Michael doesn't exist nobody knows him but like it like well like where's he who you talking about like well the guy or just with my son you know where where's he yeah, we' were going to talk to him and like you couldn't find him. We never saw him again. Ah all the times we were there. it's it's like you know talk about guardian angels. It's like this angel just came down to spend some time with Cole and he's gone I mean we never saw him again. Um it was. It was just it's it's hard to believe I guess I know some people don't believe us when we tell it but you just had to be there I mean.

42:11.92
astockov
Yeah, ah Michael.

42:19.10
astockov
Ah, that's amazing. Ah.

42:30.10
Chris
I have a I have a picture of him and that's the only thing I know of Michael and he was there that day for a coal and like said out of all the times we're back. We never never met him again. You know we ask about him and it's like he just it's like he didn't exist except for the 30 minutes he spent with coal.

42:32.22
astockov
And.

42:45.39
astockov
Wow that is unbelievable. Oh my gosh. So emotionally how is boston special for you and Connie.

42:56.20
Chris
Well for us I mean it's almost a place where our child got a new life. You know, um they they took us in. We met a lot of the same people. We sat a lot of the same nurses over the time course of time and.

43:02.42
astockov
And.

43:15.24
Chris
But um, you know they they took co in and and really gave him a new life and they spent a lot of time. It wasn't just like a decision hey or we'll have brain surgery. We're gonna do some stuff and you know. They would talk to us they had they'd spent a lot of time on Cole's case and did a lot with him and and the great thing about it for Cole was it wasn't just the hospital. It's like the whole the whole city is you can tell that they they love on these kids I mean. Went to Legoland and they saw his Boston Children's Hospital bag on that was holding his eeg and we get there and they give him a special treatment. He gets this brand they get bring him a ah set of legos to have and and you know we got to go what. This was an experience that Connie and I got to enjoy and so did Colin because of coal but just somewhat how great the city is we were going to watch a ah red Sox game and Cole is going to be hooked up to his eeg and he can't go through the metal detectors when you do that.

44:12.10
astockov
Yeah.

44:25.80
astockov
Oh.

44:28.56
Chris
So I called the stadium and was talking to somebody and explaining it to him and they said well you're going to have to go to security and talk to them so I talked to this guy on security about it and I was like you know I we want to go but I he can't go this to the security gate it just it can't happen. He's like well look It's what what? I'm gonna do he said I will give you my number he gave me his personal number. He said I want to meet you at the gate and we're gonna walk through and we'll just we'll take in I said I appreciate that just makes it so much easier and I was talking to him I said I said have a question for you I said i' trying to buy tickets to watch Batton practice because he wants to watch Batten practice. I said can you do that? He said we had to be a season ticket holder to do that and I said okay I said no problem he said but give me a second I'll call you back so he calls me back and he says how many people you gonna have when I said I'll be 4 of us. He said okay.

45:07.37
astockov
Um.

45:25.37
Chris
So he shows up that day and why calling when I get there. He walks with suicide and he has he gives us these four passes he gave us 4 passes to go on the field to watch batting practice so we were on the field watching badning practice and.

45:37.43
astockov
Oh my God Just ah.

45:44.48
Chris
There were some other kids there and you can just tell the red Sox and I'm sure other organizations. They just really have a special place for these kids you know and the players he got to meet his favorite player. He got all these autographs and it was just a special moment for Connie and I just calls cols having to go up there for all these. Surgeries and and appointments and just for him to have some normalcy there and get to have something for him. It was just great and that's just something that the children's hospital does and that's a city does and it's just it just holds a special place in our heart. Not just the.

46:07.28
astockov
Movement.

46:20.78
Chris
You know the doctors and stuff they they change Cole's life and we'll never be able to repay them for that. But just the city in general what they did for him and and and all the kids. It's just it's just special.

46:24.73
astockov
Ahead.

46:30.17
astockov
yeah yeah I know you told me that you and Connie were able to just release a lot of that anger I guess that do it had over the years and all the disappointments and the struggle.

46:42.33
Chris
Um, it it was I mean it was and just to see you know and I will say you know when we when a surgery you know when we saw those seizures I think part of that was still there.

46:55.53
astockov
In here.

46:56.40
Chris
And coming back but you know just just after that just everything has been. It was very very stress relieving I Guess to know that you feel like you're in the right hand in the right place and you know then then you'd have God kind of telling you there sometimes hey.

47:05.67
astockov
Here.

47:15.87
astockov
Yeah, yeah, yeah, so what are coles favorite things to do now.

47:16.40
Chris
Hey Bud you just need relax. You know I'll take this on for you. But um.

47:24.92
Chris
Well col cole still loves to play baseball. But I think baseball is his favorite and he loves to play golf. He plays golf with my dad every week so those are 2 of his favorites. He loves bunker hill football just loves it. He.

47:34.67
astockov
Ah.

47:38.40
astockov
Yeah, yeah, yeah.

47:42.20
Chris
He loves being the manager and being out there with those guys I mean the as soon as so I got to coach with Jv Baseball this year as soon as our game was over I swear the next day he's like dad I'm ready for football I like okay buddy. Okay.

47:48.29
astockov
E.

47:59.90
astockov
Ah, oh and when he and Luke were all boys together if that was hilarious. ah ah yeah, yeah all right? So you've got to describe what it looks like to see Cole play baseball.

48:01.83
Chris
He he loves it. Gosh.

48:17.40
Chris
So Cole is I guess to me, it's not a big deal I've seeing all the time but you know so col can only use 1 hand he catches in throws with the same hand you know, um the best part about it and this is kind of my proud dad moment.

48:20.82
astockov
Ah, yeah.

48:34.81
Chris
Is when you for him for me. It's normal. He catches it takes it off throws. It puts his glove back on but when you see people watch him and like it's like an amazement like oh my gosh is he really doing that you know yeah, it's just so natural to him and.

48:45.83
astockov
Yeah I mean like he's so fast.

48:54.18
Chris
You know, just to see people you know and and so we had a practice this year um when he hits he hits one handed. He can't swing with two hands. So it's all one handed so we had a practice this year I made everybody hit one handed and.

49:04.49
astockov
Ah, ah, but he's so strong.

49:11.62
Chris
And and you watch these kids and and it does I think they gain respect for coal that way because they realize how hard it is for him but man just to watch him. You know people will see him as oh man look what he's doing. You know he's he's doing all that 1 hand foot for coal. It's just.

49:18.86
astockov
Aha.

49:30.26
astockov
You know? yeah.

49:30.88
Chris
Umm, just playing Baseball. It's nothing different for him. You know, but it's ah it's fun to watch. Um, you know I think it can be inspiring for people to see just because they see what he does and and the effort he puts into it and you know he's a. The special young and.

49:50.71
astockov
Yeah, he is. He is um now that we've started going to church with you I see some of the stuff that he does. So um, what does he enjoy most about church.

50:03.42
Chris
Definitely the youth group definitely youth group. He loves going with Patrick and the youth group doing things. Um, you know he got to go to the youth gathering in Texas this past year which was huge. He loved that. Um, but other than that.

50:07.15
astockov
Okay.

50:19.89
Chris
Cole loves to be an usher I mean he lives for it. He we so the way it works at bethel you know we we'll sign up and it might be. You might do a month two months a year but he would be an usher every Sunday it just I he just loves it I mean and.

50:22.23
astockov
And ah.

50:36.30
Chris
For me as a dad I'm I'm proud that he wants to serve the church that way. Um, but it's not just that he just he takes it serious and I'm I'm proud of him for that but he loves to be an usher at the church and that's just that's great.

50:37.51
astockov
Here. Yet.

50:49.52
astockov
Yeah, my uncle Johnny he was the exact same way. Yeah, he would ah the way our church was arranged imagine like a a cross how you've got the long aisles and then you've got the 2 sides you know and he would sit on one of the sides and help.

50:52.67
Chris
Yeah.

51:04.13
Chris
Um, in yeah.

51:07.60
astockov
Pass offer and plate and he just really enjoyed that. Yeah or he would pick up like little the little cards that visitors would fill out. You know they didn't he took that Seriously yeah yeah.

51:14.81
Chris
Yeah, yeah, yeah I told Ko we he just be the weekly greeter I think you just sit out there and greet air everybody as they come in. Yeah yeah.

51:25.84
astockov
That's the truth. Yeah, give out bullet to yeah, all right? So one person we haven't talked about is Colin your younger son. Can you ah tell us about Colin.

51:38.47
Chris
Well I'll tell you with Colin um, as he was younger growing up with coal. Um, it's basic with the Boston deal. He thought it was just a vacation every time we went because he would go and he's getting to all this stuff.

51:51.60
astockov
Ah ha. Yeah.

51:54.63
Chris
There's a couple times. It's especiallyally when col Coed surgery that we love calling at home for the first week and then my sister-in law came up with him well shoot they went on trips they went everywhere and he just thought that this was just a big fun day. You know he got to go to the Red Sox game Lego land. Um.

52:06.81
astockov
Here.

52:13.34
Chris
So he he got to experience that differently. But as they've got older. You know they're like brothers they argue. They're gonna fight but I'll tell you what Colin has got the kindest heart I think I've ever met. He will do anything for that that for coal. Um. If he sees somebody picking on coal. He's gonna call him out on it. Yeah, he's not he don't he don't like that a whole lot. He's he has come to meet when he was younger. He's like dad. Why are they picking on coal and as he's got older I was like buddy I said it's okay for you to take care of that. Yeah, you can step up and say something but Colin um.

52:34.17
astockov
Here.

52:51.89
Chris
So Colin he's a super brother but he loves he loves sports. He's he's like Cole they're big baseball guys. Um, you know they do a lot of they'll do that a lot in the yard. You'll just try to find him they're outfi and ball in the yard. But he's ah he's grown up. Um.

53:02.16
astockov
And then.

53:11.83
Chris
Just being being a really good brother I got to give him credit for that I think me and Colin but heads more than Connie and Colin dude but he yeah yeah Connie says that I would call.

53:12.56
astockov
That up.

53:21.21
astockov
Ah, we'll see that in charts. So ah.

53:27.90
astockov
Ah, yeah, so yeah, yeah, what hey we mom must do that with the babies. Ah I used to ah give my mom a hard time about that with my brother.

53:30.78
Chris
Connie says I'll let Cole get away with anything and I'll tell her that she lets con and Colin get away with anything. Yeah.

53:44.95
astockov
But I see me doing the same thing with Luke. Yeah yeah.

53:45.48
Chris
yeah yeah I know got me and me and it don't take long I mean Colin I can be having a great conversation and then all sudden. He'll say something and I answer it wrong and he's like mom.

54:02.57
astockov
Ah, oh my goodness so they are 6 years apart right? yeah.

54:07.19
Chris
They are yeah they are um it wasn't our intention to have kids 6 years apart originally. But um, you know when would kind of with Cole and dealing some his stuff. It kind of got pushed back a little bit but the other six years apart

54:11.42
astockov
But.

54:19.21
astockov
Oh yeah, yeah, yeah, yeah, and that's right now. Um.

54:24.29
Chris
So that's ah, that's good. Give me time for if cold cold gets a car. It gives me 6 years to save up for another one. So.

54:37.92
astockov
I Know all the procedures hospital stays therapies were really expensive. How did people help out.

54:46.12
Chris
Wow. Um, honestly, it's starting out. Um, starting out. It was really a lot of not just family but you know Connie's mom and dad and my mom and dad are maybe. For the most supportive people you'll ever meet in your life and you know they helped us do a lot of that and um, but the church that's why I'm telling you church family is is just you know the church and community I don't know where to start with that honestly because Connie went to school one day and.

55:06.36
astockov
And here.

55:21.31
Chris
Offered had taken up a a donation for coal and you know it and the church had taken up a door offering for us and then Patrick and the singer youth for trunk treat 1 year they donated the money for coal to to be able to get through some of that and. That was kind of some of the early stages um to help us with the travel and different things and you know that was a huge a huge benefit to us and we um, we were fortunate to be able to go through that and then we have started. You know we started trying to do some fundraisers and you know so I was like well we need have a golf tournament for coal. So the the year before he had surgery. Um, we did a golf tournament for coal and um, we were able to really raise money that way and it's.

56:02.36
astockov
You know.

56:17.97
Chris
It's not the medical bills that that can be the biggest the biggest toll. It's just to travel. You know the travel of of the flights and the hotels and everything having to go to Boston that was that was a big toll when you know anybody going through that you know, um.

56:21.61
astockov
And then.

56:33.38
Chris
Insurances can be great and and you know you got to meet certain things with the travel can really take a toll and so that's why people said that we need to they want to do a golf tour for coal so we did a golf tournament for coal the very first year we did holes for coal um to help raise some money and.

56:46.00
astockov
And here.

56:51.15
Chris
Um, the first actually the we this year will be year seven the first 2 years we did it was to help raise money for coal. But fortunately things calm down for us and we've been able to do it now The last five years we've done the golf tournament. We've been able to do it for another family. So to answer your question community community and family is how we got through this.

57:14.80
astockov
Yes, yes, so the name of your charity is bold like coal is that correct.

57:20.83
Chris
Yeah, bold luck Coal was kind of how it got started. Um and then the holes for coal was just kind of kickoff. That's what we call the golf tournament but the bold luck Coal I Guess you know that's kind of the cherry that we we kind of use to raise money for.

57:29.82
astockov
Ah.

57:35.60
astockov
Okay, all right? Um, what if people ever wanted to donate to that. How would they do that.

57:42.37
Chris
So if you ever wanted to donate to that you know you could reach out to Connie or I um, we we have an account set up for the bowl lot coal fund. Um, you know we work with the church to do that. Um, the downside of our our. Kind of foundation so to speak is you know we don't do enough to be classified as a five one c three so it's not really, you know we don't have that tax that tax id but that's why the church we set it up. We set up a fund through the church if you wanted to donate it.

58:05.12
astockov
Yeah.

58:15.19
astockov
Okay, so that's right.

58:19.37
Chris
Yeah, it does not go to the church. It is simply a way to donate to the foundation or to the boldlock coal fund um and being able to use it as a write off. Um, but um, you know we've talked about it but we don't have that five hundred one C three at this time.

58:33.60
astockov
Okay, but they could go to bethel Lutheran church claremont.

58:40.68
Chris
Yeah, you could anybody. So so the people have done it in the past. What what? you'll do is if you wanted to write a check you just be in the memo you put you can put bold like coal. Um, or if you wanted to donate to the golf tournament. You can put holes for coal and and.

58:50.59
astockov
And here.

58:58.24
Chris
When that when you do that it goes directly to that account. Um, so we'll we'll use that this year we actually have our um, our sponsor picked out for this year we're gonna do the golf tourment for Reagan Swanson this year so that's where all the what.

58:59.52
astockov
Oh.

59:15.31
astockov
Um, oh yeah, okay.

59:17.90
Chris
Yeah, we'll help her try to help her family out and um, the good thing about it is what we're trying to do is build it up. We're using the account of the church by our goal is to build it where we can do it outside the church and have our own five hundred one C three we want to try to help people throughout the year with the golf tournament. It's kind of you help them 1 time and it's a great thing but we're trying to build up an organization to help people throughout the year as we can so that's that's our goal. We've always said we can never pay people back for what they gave us. It's just you can't but.

59:44.22
astockov
Ah.

59:52.90
Chris
You know this is kind of our way of helping people through times that we've been through you know.

59:55.35
astockov
Yeah, so how do you go about picking your sponsors. What do you look for.

01:00:00.26
Chris
So what we'll do well we try to go through and we'll find a we'll find try to find a child in the area that's going through some kind of you know, medical. You know, medical event treatments or whatever case might be during that time. Um, and it's not just Connie and I always picking it. We have you know we kind of have a I don't call it a board but we do have a group of people that goes together and we try to make these decisions and if it's multiple kids we'll try to help as many as we can through that time. Um, we do try to pick a child and stand the pediatrics simply because you know that's what we went through I know everyone needs help and we're not trying to you know, keep anybody out but you know we're trying to trying to help out when those. Those children are going through those hard times and you know Reagan. She's had some brain surgery as well and has had to go through some things so she's kind of one that came about was was sent to us as an as an opportunity to possibly use as our sponsor this year so that's ah that's what we chose? Um, you know in the past we've done 2 or 3 kids so we try to we try to do the best we can to to help out a family in need 7 yeah, she's I believe she's 7 um.

01:01:23.30
astockov
Now how does she seven seven

01:01:34.40
Chris
I think it's been about six or seven months since she's had her surgery I believe she's just had to go through very similar what coal is um, just a lot of you know monthly checkups and and.

01:01:50.56
astockov
Evening.

01:01:51.50
Chris
Multiple um Mris and eeg gs and things. So um, she's right now. She's been cleared I think she's been clear as far as thinking they got all of the tumor out but it's just a she still got a long road ahead I think I think they said she has 2 years of follow ups. So.

01:02:04.17
astockov
And.

01:02:10.19
Chris
So we'll try to try to ease that on them a little bit I hope so one needs a visit from Michael I don't care if no one ever sees him again, everyone needs that guardian angel to show up every now and again, you know.

01:02:14.30
astockov
Yeah, maybe she'll get a visit from Michael. Yeah, hope so yeah, a yes yes I agree yep all right? Chris um.

01:02:31.32
astockov
There's one other story I would like for you to share and I just love the story your dad shared with my husband Joe about putting in a swimming pool for coal.

01:02:41.45
Chris
Um, yeah, so um, man me and I've got 2 brothers I really didn't care a whole lot. But my youngest brother really wanted to pull just hammering mom and dad wanting to pull and never got 1 you know. Just never got 1 You know? Um, so you know there was no pool in a yard and okay, no big deal. So you know we'll fast forward a little bit to you know coles born and we find out all this and our first visit to one of the therapists.

01:02:59.34
astockov
Um, if.

01:03:16.60
Chris
Ah, the therapist said you know we need to do this and here's some treatments we can do and said but the best thing is for Cole to be in the pool to be in the water he needs to be just it just helps range of motion and helps therapy. So it said great. You know we get home and mom calls and just wondering how the how the appointment went so. Were telling her and we said we're gonna you know we're talking to her and said you know I think we're going to. We're Goingnna call a y we need to get a membership the y just because you know we need to get in the pool we't able to have that pool available because they say that's such a good. You know, not even doing certain things just swimming in the pool would be so so good for him. So so you know we talked about it and let her know how it went and I don't know what day of the week that was but the next time we shut up to mom and dad's house. We're sitting there gonna eat some dinner and I look down the floor.

01:03:51.80
astockov
We.

01:04:08.97
Chris
And there's brochures for swiming pools and I was like what the heck and we're looking there. She's like yeah your dad called he's looking into getting a pool I said looking into getting a pool well about two weeks later there's dirt being moved in the backyard.

01:04:27.55
astockov
Ah, ah, anything for those grand babies. It was.

01:04:28.30
Chris
So um, anything for those grand babiess and Cole was Cole was the only grandchild at the time and you know he was the first one and I know dad would do it for anybody. But um, yeah cos therapy appointment with a therapist saying he needed to swim.

01:04:39.40
astockov
Yeah, ah.

01:04:46.83
Chris
Is while my mom and dad have a swimming pool. Um.

01:04:47.61
astockov
Yeah, yeah, that is awesome. Ah, and I love how your dad a cold they sit together at turt Your mother's right there with them and.

01:04:58.47
Chris
Um, I'm telling you what? um my dad and Cole have a different kind of special bond. It is just and he was the first grandchild you know, but it is just there. There's some listen when papa's around I don't exist. He don't need to.

01:05:11.25
astockov
Yeah, yeah.

01:05:14.17
Chris
He don't ride with me. He don't sit at church with me and go to eat lunch. He don't sit beside me at lunch. He just I don't exist and that's good I'm glad they have that bond. But it's it's all about papal.

01:05:19.27
astockov
Yeah, yes, that is wonderful. Last thing Chris what what final advice or words of a. Um, encouragement for parents or special needs. Kids could you give.

01:05:40.30
Chris
Well I guess first I would say you know it's gonna be hard. There's gonna be hard times and I wish I could tell you there's not. But even today cold 17 there's times where I also have a moment where it's it's hard. Um, you know, but.

01:05:53.61
astockov
And then.

01:05:58.25
Chris
Ah, the 1 thing I want to most want to really push is just don't give up on the lord. You know you got to reach out to him. You gotta talk to him that's what got us through it even the times where we're mad and blam him for things. Um, you know you're gonna have your moments of being angry. And you know I can't tell you how many times we would ask why you know and I'm not gonna say there's not times today when we have a moment and ask why but that's that's how we got through it and the other thing is you know Connie and I got through it together. So don't think you have to do it alone. You know.

01:06:33.97
astockov
Um, and opinion.

01:06:36.29
Chris
Um, you know, even if maybe you don't have as much family I'm fortunate. You know we have a ton of family around but um, without family. Yeah, you know the community you know, let the let the community love on you. You know let the church love on you. You know. Don't think you have to do it alone I think that's 1 thing that Connie and I learned early on even when we were upset and mad is that we can't do this alone. It's 2 and and I would say that even not with a child this with a disability you know, but when you're dealing with a child with a disability. It can be you know.

01:06:59.78
astockov
In here.

01:07:11.92
Chris
Um, I've always told people and I don't mean this to be rude I Truly don't because people do care and they'll say it. You know I understand how you feel but if until you have a child with a disability. You don't truly understand what it's like to have to raise a child with a disability so you Know. Just don't feel like you're ever out there by yourself. You know it's It's you don't have to take on the world by yourself. So just lean on others lean on lean on God You know you know I'm I'm gonna ah I talk to him a lot I can just be sitting here and you know it' it's It's okay.

01:07:42.38
astockov
Yeah, yeah, yeah.

01:07:47.67
Chris
You can You can talk to the Lord I mean it's not a. It's no big deal just talk to him so that I would advise just don't ever get away from that even on your times you're mad. Um, the good thing about it is he knows we are that way he knows we're gonna.

01:07:56.17
astockov
Yeah.

01:08:04.49
Chris
Go through those times of of being upset and and and not putting all our faith in him but the good thing is you know we can still talk to him. He still loves us and don't forget that he's there.

01:08:15.81
astockov
Ah, you know what I found um with my uncle my my grandparents were strong Strong Strong Christians I mean they had so much faith and he just absorbed that like a sponge and ah. After they had both passed away I would when I'd come home to visit I would pick him up and we he always wanted to go out to the cemetery and visit their grave and then we'd go and visit my mom's his sister's grave and I he had heaven to look forward to like.

01:08:43.40
Chris
See.

01:08:49.39
Chris
A.

01:08:51.95
astockov
I said to him one day when we were out the cemetery I said just think Johnny when it's your turn you're gonna be completely healed. You know what he said he said yeah and I'll be able to run like you know. I mean that's you when you instill that kind of faith and then they have that to look forward to that one day they're going to be healed and their bodies are going to be perfect. You know and and and when he died and um I called one of my cousins about it and my cousin he said to his wife he said.

01:09:09.50
Chris
Um, yeah, the up I know.

01:09:25.58
astockov
Ah, bet Johnny is just racing everybody in heaven. Ah.

01:09:30.49
Chris
Ah, yeah I know I know it. It's ah it's great. You know and that's you know I think that's 1 thing which got always remember you know that? um you know and.

01:09:33.33
astockov
Yeah.

01:09:46.85
Chris
I've Connie I've talked about this the thing about Cole was I'm not sure sure that Cole no knows he has a disability you know so is is Cole going to be looking forward to heaven to have that other hand I just think he's he's just so happy and um, but yeah, that's that's very true. You know, but um.

01:09:52.15
astockov
Rasha. Yeah.

01:10:00.89
astockov
Yeah, yeah, yeah, okay.

01:10:05.14
Chris
So um, there was 1 other thing I wanted to add to that and I should I mentioned that a second ago was when you have a child with disability. Don't think it's selfish to think about you sometimes sometimes you have to just take time and Connie and I have done this.

01:10:21.90
Chris
It's okay to take time for yourself you and your wife go out and have a night away from your from your child. It's not bad that you leave them somewhere. So don't forget about yourself either Connie and I did that for a little while and and we realized that we can't do that and that's some words of advice I like to always give people and anyone even when you're going through those times. Um, you know like I was talking to Reagan's dad um it's okay to take time for yourself because you need to do that. You know so don't ever forget that.

01:10:47.30
astockov
Then yeah, yeah, well Chris this has been awesome and I thank you so much for doing this hopefully one day you can come back on and we can talk about other stuff all right? Thank you.

01:11:00.39
Chris
Sounds good. Thank you.