Thursday, January 28, 2010

Answers to FAQ's From CHD Parents

PLEASE KNOW that these answers are based on my opinion and experience ONLY and YOUR child is different as EACH CASE IS DIFFERENT!!! Just take these answers as tips that may or may not work!!I'm NOT a doctor, a psychologist, or a professional of any kind!!

**Please, if you have any questions for me just leave me a message or e-mail me at: lceleskey 87(at) gmail (dot) com and I will answer them in a future post! =D**

When did you realize that you were different from the other kids (as far as your limitations go)? I am sure that your mom did an excellent job letting you know of your condition and limitations but when did it really hit you?

First off, my mom did an awesome job of telling me about my CHD and my limitations. She always gave me just enough information at the appropriate ages at the right times. Though, when it came to gym class activities, playground fun, or having fun with my friends she never told me that I could not do something because of my Heart Condition. My mom ALWAYS told my to listen to me body, if I don't think I can do it then don't or when I get tired STOP. She also told me that when something doesn't feel right TELL someone RIGHT AWAY! I still follow these rules today. These rules made me feel more like I could be a normal kid, but gave me the understanding that I was responible for my body as I'm the only one that can feel what's going on and when something is wrong then I should do something about it right away. I realized I was different early on in elementary school, probably as young as 5 or 6 years old, but I didn’t have a full understanding or grasp on my condition and limitations. I'd say I was in about 3rd grade or about 8 years old when I knew the limitations of my Heart Condition made me different from other kids, which was hard to fully accept. It would be tough on any young kid. Though the realities of my CHD really hit me when I was 16 years old when I woke up early one moring during the summer itching, A LOT. I thought it was a lot of mosquito bites as mosquito’s love me (I can swell up sometimes) and I had been outside in the after humid damp rain the night before. I quickly realized that I didn’t have a lot of mosquito bites, I had hives ALL over my body. I cried myself back to sleep sitting up in my bed, I was scared. My mom found me hours later and she knew that something was wrong. The hives were so bad! They were on my joints so it was hard to move and on the bottom of my feet, so hard to walk and everywhere else you can think of. In those moments of the early morning is when it hit me that my health can change on a dime. I finally understood the realities of my heart condition. Luckly, after three months of a strong steroid and being watched carefully, especially since I had to be taken off my heart medications, I was fine and the hives have never come back. They never did find out how I got them, I was tested for just about everything and nothing was found, a mystery it was, but an experience that changed my life.

Has God always played a large role in your life?

Yes, he has. I look to him all the time to help give me strength. I was raised in a Roman Catholic family and went to a private school through high school. I don’t agree on everything thing in the Catholic religion, but I have always believed in God and good values. God is great and knowing he is here with me makes everything seem ok. I’m not perfect though and I have strayed from him from time to time and still do, but I know in the back of my mind and in my heart that God is the reason I’m here and I will spread the messages he wanted me to through my special heart. I truly believe God is the maker of heaven and earth; he makes no mistakes... everything has a reason.

Are your eye muscle disease/surgeries linked to CHD?

Yes and no. My grandpa has the same eye muscle disease and had 2-3 surgeries himself growing up to fix it. My mom also has a less serve form it as well. But most CHDers come with other issues, especially if their heart disease is complex like mine, though that’s not always the case. The doctors and my family think it is a mix of both genetics and my CHD that I ended up with an eye muscle disease.

I would like to know if your older brother ever resented or felt left out because of your heart condition.

That’s a hard one to answer as I’m not my older brother. He was 4 1/2 when I was born and I know he was excited to have a little sister. My parents said he had a hard time when I was in and out of the hospital because he didn’t understand why I was there and why he could see me or mommy and daddy all the time. As I got older we had good and bad times like any other siblings. He did always hate that I got more attention sometimes and that my parents listened to me more than him when we got in a fight. My parents tried their best to give him everything he needed and attention too. They always made sure to spend some kind of one on one time with him. My dad did sports with him and as I got older they did a lot more together then my dad and I did, but they are boys, I understand. My brother says he doesn’t resent me at all and though it was tough at the beinging when I was born, as I got older and medically stable, we were like any other family for the most part. He is now a daddy to a little girl and I know he will be a great dad! As for my little brother, I was 11 when he was born so he never really had to go through anything my older brother did. My little brother knows I have a heart condition, but has never felt left out or anything. He has been treated almost like an only child because my older brother and I were almost grown when he came along.

Have you always been thin or is that a family trait or do they think it has to do with your CHD?

Well, my mom is thin and my dad was a cross country runner. I have always been tiny/thin though. I have always had trouble gaining weight growing up as well as eating. It was hard to get me to eat or eat enough when I was small, but in the beginning of my teenage years I began eating like a normal person. I’ve always been a picky eater (still am, not as bad as I was little though). Even though I can eat a lot now and love to eat, I still hardly gain any weight. I have 2-3pounds water retention from one of my heart medications, but I still look thin… I’d look even thinner without the water retention. So, I think my CHD and my heart medications have a big part of me being thin. Actually, I heard once that most CHDers are tiny depending on their medication and what CHD they have.

What would you tell parents to do to help their child fit in or help them understand other children not accepting them being different?

Here are some things that MAY help:

-Keep reminding them that they are special, that people who become your friends and don’t care about you being different are your “true friends” (so to speak).

-On thing that I wish my teachers did when I was young was talk to the class about what I have and that just my heart is different… basically informing the students what they may see different about me, but it’s normal for me, not to be scared off by it, and that I have the same interests as the rest of the students. There was this one girl in my grade school that had something wrong and was in and out of school due to surgery. The teachers talked about her and what was up. They explained what she had, that she was born that way, ect. The kids accepted her a lot better afterwards… I just felt bitter lol. So, if you child is having trouble fitting in, make it a point to do something like this at their school, it could help.

-Another thing, getting them in an activity early as you can may help… whether in school or outside of school… just one (don’t want them to be too stressed). I was shy and had trouble fitting in at school, so at six years old my mom got me into acting classes and it helped. I was also into bowling and ended up playing it in high school as a sport. I never had a lot of friends, but my parents help teach me that the ones I do have are special and I don’t need to be popular to be happy.

Any advice that you can hand down to us heart moms on how to help our kids better understand their limitations as they get older?

You asked for it! Here are FOUR Awesome pieces of advice just for you! That MAY help!

-As your Heart kidds get older there will be some limitations (depending on their CHD) that they will forever have to live with, but only they know those limitations fully. My mom taught me how to listen to my body. I was taught that if I felt weird to TELL SOMEONE! I use this advice all the time! TALK to them! ASK them when they are young how they feel and to try to describe it, that way they will be better at it when they are older. Whatever limitations they have, that you know now, teach them now… in a fun way… and let them know they are special and it doesn’t matter what others think because those people who don’t run away after knowing your CHD are your true friends.

-Every Heart child will have some point in their lives where they ask about their CHD. Parents, BE HONEST, BE OPEN!! The BEST thing you can do it when they want to talk about their CHD, TALK!! If they don’t ever talk about it, then YOU TALK!! It is SO IMPORTANT that they KNOW how to be open about their CHD and learn how to cope in a OPEN way instead of shutting it out and hiding or acting like they are totally normal… if they did this they will have some serious problems if anything comes up when they are older with their heart, they will shut down and become more depressed.

-Each Heart child will probably have a point in their lives where they try to cope with their CHD, especially if they have a serious one. IF they have a breakdown, IT'S OK… LISTEN to them when it happens and tell them it’s normal. Always be OPEN with them and let them know you are always their to talk about it. IF they seem to still have distress, go get them outside support! It’s OK to do that! I did and it can help.

-Lastly, this doesn’t really have to do with limitations, but I wanted to get it out there. Try to treat your CHDer as normal as possible, let them try new things (things they are able to with their CHD, and let them go have fun, like a sleepover even though you may be scared, they need it and so do you!

***Thank You for ALL the prayers and messages of support!! They mean alot to me!! I've been SO busy that I haven't been able to spend alot of time on CHD stuff. Please know I'm thinking and praying for ALL of you!! Sending LOTS of *Heart Hugs*

With LOTS of Hope, Love, and Faith,

1 comment:

  1. Thanks for the Q&A update Lauren. You are such a big help to us parents and I hope you know how very much we appreciate it!

    Stef, Ryan, Wyatt and Logan