Journal - 2/18/04

Heather Abner

Since I wasn’t really doing the DED correctly last time….I am going to re-do it for one of my sources and add a new source that I interviewed this week.

Double-entry Draft: The Support Group Sourcebook

Share experiences	Joining a support group helps you share with others like you – I think that this is what I am looking for most. I need to find other people that can tell me their experiences with a heart defect and how they have coped, etc.
Not alone	Help you know that you are not alone in your situation – Ever since Houston’s birth, I have felt isolated from my friends that have children. They get upset when their kids have a cold, mine has had 2 open-heart surgeries, and his future is unknown. I have a hard time relating to the parents of “normal kids.” If I can find a good group that makes me feel that there are others out there like me, I will probably feel a lot better.
Understanding	Talk to people who have been there and know details that you can learn – this is important to me in finding a good support group. I have great friends and family, but no one understands what it is like to have a child with a life-threatening illness. Often, I feel like they think I am over-reacting. They don’t understand that the flu can kill my child and why it is important to keep people that are sick, etc. away from him. A support group of people in a similar situation will understand where I am coming from…
Start a group	You can start your own group if you can’t find one that suits you - I hadn’t thought of starting my own group. Through my research, I am finding groups that suit my needs, but if I ever feel like I need something else, I would be willing to start my own.
Choosing a group	Interview members, see if they have common interests or experiences – As I began to search for groups at the beginning of this search, I have found a lot of groups for heart disease. I have also found a lot of groups for adult patients. In addition, there are MANY different types of congenital heart defects and I want to find one that is related to the condition that my son has. I feel like that will help me share and learn better.
Where to find…	Internet, through psychologist, church, community, national organizations, medical community – To me, the Internet has the most resources available for support groups. It looks like there is a group for every single condition or issue out there. I have found 3 or 4 web groups that I think will meet my needs, but I would still like to have a face-to-face group so I can put a name with a face. I would also like to meet the children…it does me wonders to meet a child with a heart condition that is doing well. I feel like Houston has hope afterall…I think that the hospital will turn out to be the best resource for a face-to-face group
Are they legitimate?	Be sure to investigate group before joining, make sure they are not out for something illegal – hmmmm….this is going to be kind of difficult for the Internet groups that I have found. For instance, there is a yahoo group, and pretty much anyone can create group in yahoo. I think that I will just have to “lurk” in the group online first and see if I think that they seem legitimate. And, of course, never give any info out online.
Length of membership/amount of time involved	Depends on the group, how you feel, when you feel you no longer need support, can last a lifetime or a short time – Personally, I don’t think that I will be a support group member forever, but you never know. I will probably join and last as long as I feel that I need support, which I guess makes sense. Who knows, I may need support forever, we’ll see. I guess it depends on how Houston’s health goes. But what I like about Internet support groups is, I am finding that you can drop in whenever and post a message…No inconvenient times. As for the hospital group that I am joining…I will probably stay involved for a while, but it is a Children’s hospital, so I won’t be a member forever.

For my second DED, I have interviewed Pamela Martinesk, the group coordinator for “Kids at Heart.” This group is the “official” support group for families of patients at the Sibley Heart Center at Children’s Healthcare of Atlanta. I have learned that this group holds a monthly dinner for in-house patients (those currently in the hospital) and former patients to get together and meet each other and the hospital personnel. They also host monthly outings for the parents and heart patient to attend, at no charge, to socialize and meet.

Host planned events	Planned events are important to me, because I have found that I won’t do it if it in not set on the calendar…if the group gets together once a month, then I know exactly when to go and I know in advance
Meet hospital personnel	I like the idea of meeting the doctors and nurses, but I don’t really think that many of them will be available, because the events are mostly at night or on the weekend. We would probably only end up seeing the night shift. Although we have met most of the personnel in the 5 extended hospital stays that we have had so far, I would enjoy talking to them again and meeting new ones.
All different types of heart defect patients will be there	To me, this is a negative aspect of this group. There are so many different types of defects and levels of severity, I would like to meet and talk to those who have a common defect as Houston. Not that I wouldn’t be interested in talking to everyone, but I think that I would get the most support from someone with the same issues. On the other hand, Houston’s defect is rare, so it just might not be possible to have a group of locals with the same issues. To me, that is why the Internet groups I have found interest me more.

Before I interviewed Ms. Martinesk from the hospital, I thought that the Kids at Heart group was really going to be a good group for me to join. Although I will still probably join the group, I am not as excited about it. I realized through talking to her and doing this double-entry draft that the hospital group won’t address what I want or need in a support group. My son has a very complex and pretty rare heart defect. There are many types of defects out there, and his is one of the more serious ones. Although every defect is serious, someone with a small hole in the heart or valve issues is probably not going to have the same developmental or functional problems that Houston may face. Also, his could prove to be terminal and is not ever going to be “fixed.” He may also face a transplant or pacemaker in the near future. I get frustrated when I hear someone tell me “Oh, I know someone who had a hole in the heart, so I know what you are going through.” Like I said, not to make light of someone else’s problems, but every defect is different. I need a group of people that have the same or very similar defect in their child, so I can relate to them and vice versa. I also want to ask questions of someone who has “been there” already and might have an answer to what is going on, etc. In the hospital group, I think that there will be too many variations of heart problems to really feel connected. On the other hand, I do want to talk to people who have been in the same hospital, etc. and learn what they have learned in their experience there…

So, although the Kids at Heart group is not my ideal support group, I will probably join and socialize, while also looking for a good group for parents of HRHS on the web.