Do You Find Support For PH Kids In Your Area?

[Colleen]

Jen, this is a real problem. We took our son to a few support groups when he was diagnosed but quickly left because there weren’t any other children present. The conversations were too heavy for a child. We never found one for children in our area and I hope that has changed in the past 5 years.

I wish I had the time and energy to have started one on my own but between working full time and caring for both of my boys there wasn’t enough time for me to devote my full attention to it.

[jen-cueva]

Yes, that is the same complaint I hear from those PH kids in the Houston area. Those support groups are truly too much for a child. It breaks my heart that there are not more support groups that are more family-focused, at least.

It would be awesome if there was more support for our PH kids.

[brittany-foster]

Hey Jen and Colleen,
I know that something that really helps the congenital heart disease community with kids and support for kids are things like Heart Camp. The little girl I babysit actually goes to a Heart Camp once a year over the Summer. I think “support group” for kids should look different than discussing topics and having a discussion style environment. I think it should be more about the kids and their family members getting together, doing a community event together, organizing a bowling night out etc! Even like a pizza night or an ice cream night would be fun for them to at least just meet others and the families could meet one another too.

[jen-cueva]

That’s awesome, Brittany. I know of one local PH kid who has been to a camp like that. I agree with you about the support groups for kids. That’s the problem, it seems most PH support groups are more discussion-based.

I find that adult groups need to add in more fun activities. I think that more family-friendly support groups would help all.

I know from the times that I have attended, it’s doctors, respiratory therapist, or drug reps speaking. Discussion is also involved. But, the discussions are not something for kids.

[brittany-foster]

Jen,
ECACTLY! sometimes the discussions are even too heavy for me to chime in and speak up . And we all know that I usually have something to say and don’t stay quiet on topics that matter. But it’s just so much to process. There can be a lot said for support that goes beyond just talking about our illness. Support can be in the form of getting together for dinner and drinks, organzing a bowling event or a local hockey or baseball game etc. Something where we can enjoy the company of other’s like us without the gloom and doom that sometimes goes along with discussion groups. I think BOTH are necessary though!

[Colleen]

Brittany, yes, definitely, heart camps are great! That is how my son and @kathleen-sheffer met. The other great way to form a kids support group of sorts is reaching out to PH parents who live in your area. That is what we did. Occasionally we would get together and go to the zoo or museum. It was nice for the children to be around others just like them, toting around the same medical equipment and have the same limitations.

[brittany-foster]

I love that idea! I would love to organize something like that. Maybe there is a way for me to get in contact with some of the local CHD clinics in my state and just to put the word out there about PH support “meet ups”. I feel like this is where a good chunk of the younger kids with CHD would come from. I’m sure they have pulmonary clinics too that they work with. I think it would be good for the parents to see me and others around my age and older interacting with the kids too. I know that a lot of parents look up to the older crowd of CHDers too when it comes to setting examples and giving them hope. I need to look into this. I love the idea of going to a museum or the zoo or something. Especially as the weather is starting to get to be that perfect Fall temperature here in New England!

[Colleen]

Also going to see a movie then having lunch afterward is another nice one. I always say movie first because then they have something to talk about when they go out to eat. In the pediatric FB group that I belong to we just simply asked parents to share where they live…if they wanted to…so they could swap information those parents to arrange gatherings.

[brittany-foster]

That’s a great idea too. RI is such a small state that we would probably need to get the Boston hospitals and that area covered too. Do like a support group for both states combined or something? I think it would be a good idea! Lil Rhode Island gets left out of a lot of the support groups LOL we are such a small state that we end up having to create our own or just joining into another state close by ! There is a good group for adults though (although I am the youngest one in the group)

[jen-cueva]

That’s awesome! I didn’t realize this is how your son met ” our” Kathleen. I’m learning she’s quite popular, lol.

I’ve heard such positive experiences at those kid camps. I’m glad to hear that the PH and heart kids can have some fun and meet others they can relate too.

[jen-cueva]

Great ideas! I love the movie idea. It is true discussing the movie could be fun and open up the conversation. I also have enjoyed lunch or dinner support groups.

As Brittany mentions, I think we need both for adults, fun and heavy stuff. Although it can be gloomy it’s part of PH. I just do not enjoy when it’s all gloomy and no fun lol – it’s nothing against others, I don’t like my days too gloomy either, I need some fun thrown in, lol

I’m hoping to meet up with a few local PH kids I’ve known for years, they are now in their teens and we are planning to do a meet-up hopefully next month. (The parents and teens.) I’m looking forward to that, I’m sure we will do lunch or dinner.

[brittany-foster]

Jen,
Your meet up with the parents and teens sounds really fun! I am sure they will get a lot out of it. I always thought mentor style programs were really great. Just having someone that is older than them that they can relate to and have that person to look up to is so important. You are a great role model. Even getting the teens and parents of teens to be involved in social media groups and stuff like this ! They are so tech savvy and these forums should be good for them to be a part of too.

[jen-cueva]

Thanks, Britt. I am excited to meet up with them. One young girl recently had a transplant. This is why we are waiting until next month. Both, I met as they were still young kids. It is awesome to watch them mature, a blessing in itself as they both have been through some tough struggles. You can relate , I know.

[brittany-foster]

WOW! it’s so hard to see young kids going through such a hard obstacles. Especially because all of my conditions have been with me since birth too. It almost breaks your heart even more for them when you know what they are going through and the secret fears and worries they face even if they don’t always talk about them. That’s why it is so great to form these groups early on because it gives them someone to lean on that really understands. I’m glad you can help be that person for them and I know they appreciate all of it ! Send them all my love and best wishes ! Let them know about the forums too, maybe they (and their parents) would be interested in joining and chatting with us !

[jen-cueva]

Thanks, Brittany. I have shared the forums with their parents on a PH kids page. I need to send the young ladies the links as well. I know they could relate to much of the topics here.

Great reminder.

I feel like I am the one gaining from knowing them. Watching them has been heartbreaking but awesome as well. Bittersweet, I am so happy that they are still with us and doing the best they can despite their challenges.Superheroes, in my opinion.

[brittany-foster]

I totally get the feeling. Younger kids fighting these hard battles and going through these conditions with grace and strength gives ME so much to fight for. A lot of the testing that I go through that I really don’t want to be put through I remind myself of the younger kids and it pushes me to keep going. They aren’t given much choice and either are we, but kids and young adults and teens with this condition just keep pushing forward no matter what and are so resilient. Their resilience really inspires me a lot.

[jen-cueva]

So true, Brittany. These kids are certainly resilient and inspire me. I am in awe at their strength and watching them helps me more than they could imagine. During the toughest days, reminding myself what they go through at such a young age, makes me keep moving forward.

[brittany-foster]

Same here, Jen. I totally get the feeling. I also kind of miss being young with a medical condition (as weird as that sounds). It’s like a was naive to all the things that I couldn’t do and just lived without limits. Now that I HAVE limits sometimes I stress about them too much. I wish I still had the innocence that I did back then. Now, with everything that I’ve been through it’s almost like I know too much. You know what I mean? It’s hard to put into words.

[jen-cueva]

I bet, Brittany. As a kid, we are all so naive and innocence as you mention. I’m sure as you’ve gotten older, learning more about your body and illnesses certainly has changed. I’m sure knowing more isn’t always the best, although other times we want to know what to expect.

I often say the same as I worked in nursing. Some days, I think I may not want to know what’s happening. I can not relate to you being sick as a child, this was the most I can relate there. Does that make sense?

Another catch 22 situation to deal with.

[brittany-foster]

I totally get it, Jen! I know what that feeling is like the think “do I actually WANT to know what’s happening?” I have learned the hard way that it’s better to have answers and explanations than no answers at all. But especially with these conditions that go along with PH, finding answers just leads to more testing and questions and testing and procedures and the list goes on and on! That’s why sometimes I feel like saying “just don’t tell me, I don’t want to know” but in the back of my mind I really do NEED to know what’s going on. Confusing, but I’m sure you can get what I mean.

[jen-cueva]

Yes, Brittany, I SO get that! It’s not just you.

[Colleen]

@brittany-foster @jenc, sorry ladies, I got behind on this topic. I read through and you both have such kind and giving hearts. I know that you feel inspired by the pediatric patients but I’m telling you, that feel inspired by you too! For example, there is a big age gap between Kathleen and Cullen but the two of them became fast friends anyway. One thing I have discovered over the years is that there is no age difference in PH patients. The mutual understanding of what each PH patient is going through and what their basic human needs are, is the same among every age group. That bonds all of us so I think combining adult and pediatric patients for social events is enjoyable. Kids can learn and gain inspiration from adults and vice versa.

Then there is the actual, heavy duty support groups. We walked into one with our son shortly after diagnosis and even his dad and I weren’t ready for the heavy topics discussed. I remember feeling so overwhelmed I went home and cried. I almost wonder if there should be support groups designated just for those newly diagnosed. Help ease them into the reality.

[brittany-foster]

That’s a good idea too Colleen to have support groups for the newly diagnosed and discuss things such as testing, medical treatments, side effects of medications that they have been recently put on, therapies that are working/ not working etc. Just more of the “newly diagnosed” type topics would be more beneficial and also having caregivers and family members there would be good too because especially when someone is newly diagnosed they need all the help they can get and all the support and understanding too.

[jen-cueva]

Oh, I bet, Colleen! Some of the support group meetings that I’ve attended can be scary and overwhelming for me. I’m sure newly diagnosed patients could easily be overwhelmed and terrified.

I think the SG leaders need to remember how it feels to be that newly diagnosed patient. That’s a great idea to have one specifically for the newly diagnosed.

Thank you for such kind words. I do agree that PH has no age limits. One of my longterm PH friends is close to my Moma’s age. I’m sure the bond that your son made with Kathleen is very special. The bonds we make with other PH friends can be so special.