The Others

May 21, 2010 at 6:12 am 5 comments

Abby’s Tetralogy of Fallot can best be described as life altering.  From the moment we found out she had a congenital heart defect, our lives were forever altered.  Nothing would ever be the same for us again.  I would never look at anything in quite the same way–our lives were changed.  By the time our second child came along, three years after Abby, our changed world was normal.  In our eyes, CHD was just something we dealt with.  Sometimes it just floated along in the background and other times it took  a more commanding presence.  Abby’s younger brother, Nathan, has never known life without CHD.  He lives with it, like the rest of us.  It is part of his life just as much as it is for the rest of us.  In the world of CHD victims, he is a silent victim.  It hasn’t physically altered his heart but it has touched his heart in other ways.

From as long as I can remember Nathan has been Abby’s biggest fan.  As a sibling to a heart child, he has learned to be patient and understanding.  He is sensitive and empathetic to the feelings of others.  As the date for Abby’s second surgery nears, I can see the toll it is taking on him.  My heart aches for him.

On more than one occasion he has made comments like, “I wish summer was over so Abby’s surgery would be done” or, “Why do they have to cut Abby?” or, “I don’t want Abby to get hurt.”  These talks often are accompanied by tears or frustrations.  As her date draws closer, his emotions are more frequent…he is scared for his sister and dreads her surgery almost as much as Abby herself.

If that was all he had to deal with, I think we could handle it.  But that is not all a sibling to a heart child deals with.  On top of fear and sadness, Nathan has some additional emotions pulling at his heart strings.  Abby wanted nothing more than a Nintendo DS to take to the hospital.  She has wanted one for over a year.  We made her a deal that if she worked toward helping to pay for it, we would buy one for her before her surgery.  She readily agreed.  Last weekend, she collected some items and sat outside at a community garage sale and earned enough money to buy her DS.  Her aunt took her to the store and they purchased her DS.  The moment she came bounding into the house with her new purchase, complete with games and accesories, I saw the hurt in Nathan’s eyes.

In addition to fear and anxiety, you can add jealousy and alienation to his list of emotions.  I felt terrible.  He mumbled to me, “Abby gets a DS?”  I put my arm around him and tried to explain that because she would be in the hospital, and because she earned the money for it, she was able to buy one.  While Nathan understood what I was saying….it certainly didn’t change the hurt and jealousy his little seven-year-old heart was feeling.  And to add insult to injury, later that night as I was tucking him in, he told me he was sorry he got upset over Abby’s DS…he felt bad for being upset.  Now he has guilt to add to his emotional baggage.

I have been reading everything I can find on how to help these “other” victims.  While the research and field of CHD is not silent on the subject, it certainly does not contain a wealth of information either.  I did come across an article that has been particularly helpful by Dr. Lauren Solotar, Ph.D.  The article was written for siblings of Special Needs in general.  Solotar explains that siblings may become abusive, argumentative, combative, and frustrated.  Other siblings may become overly helpful or attempt to become a “perfect” child.  Either way, these signs are clues to help parents know that they are needing help.

Solotar gives some steps parents can take to help siblings.  These steps include:

*LISTEN to your child.  Ask them to share their feelings and let them know you understand HOW they are feeling.  “Are you telling me you feel angry over…?”  or “So you feel left out when….?”

*Let them know it is okay for them to feel how they are feeling.  It is important not to tell them don’t be mad or you shouldn’t feel that way.  They need to have their feelings validated and they need to know that there is nothing wrong with feeling jealous or angry or alienated.  Help them find healthy outlets for negative feelings and help them know it is okay for them to feel how they do.

*Make siblings your ally.  Help them understand the condition of their sibling and help them understand what they can do to help.  It is important not to make them feel unnecessarily responsible for the child but having them help and understand the CHD child can help them feel less pushed aside.

*Be fair.  Don’t make your healthy child do all the chores and work while CHD children are excused.  Find ways of making chores and other activities fair.  CHD children can pick up toys or help wash dishes.  It is important not to let special needs children “off the hook” in the eyes of siblings.

*Give each child individual attention.  Siblings who are acting out especially are signaling they need some special one-on-one time.  This special attention is imperative to making them feel secure and important.

Dr. Solotar explains that “With your encouragement and support, your typically developing child can become a more loving and understanding person because she or he has a brother or sister with autism.”  I believe the word “autism” could easily be replaced with the words Congenital Heart Defect as well!

The other victims of CHD need just as much love and attention if not more to ensure that they never feel pushed aside.

If I could take away Nathan’s emotions, I would in a heartbeat.  Since I can’t, I can do everything in my power to let him know that he is every bit as important and loved in my eyes as his heart sister.  And in the end, I think he will come out a better person in spite of CHD!

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Entry filed under: Congenital Heart Defect, family life, Open Heart Surgery, Stress, Stress of CHD. Tags: , , , , , , , .

Pre-Surgery Jitters A Quiet Enemy to Recovery–Depression

5 Comments Add your own

  • 1. michelle inkley  |  May 21, 2010 at 2:42 pm

    have you writen a book? I’m so touched by your story. I have Tanner and deal with his Down Snydrom everyday and there are days when i sit in my closet and cry for a good hour. Then you have to wipe those tears away and get back to it with a smile. Its so hard but oh how we grow! you are a beautiful writer and stroy teller I’m so happy I found your blog….

    Reply
  • 2. Shannon  |  May 21, 2010 at 7:21 pm

    Beautifully written!

    My oldest daughter has issues dealing with her little sister’s CHDs also. It’s so hard to try to explain things to a child, when we as adults don’t even understand it. I have looked for help involving siblings and I appreciate you sharing this information.

    Reply
  • 3. Jeanne Patterson  |  May 21, 2010 at 7:45 pm

    What a touching story. We have 3 boys and our youngest son Walker was born with Tetraolgy of Fallot and was also diagnosed with DiGeorge Syndrome. It’s tough. Our other boys are sooo protective over their little brother. Walker will soon go thru his 2nd open heart surgery to replace his conduit.

    My prayers are with your family.

    Reply
  • 4. Laurie  |  May 21, 2010 at 8:44 pm

    Nikki…I just love to read your posts. You are a great writer/story teller. As ya know this was something that we had to deal with alot with Chris, not as much Skyler cause of the age diffenence. Chris was always being passed around to be watched from family and he always felt that we cared more for Kasey. We had to make a point to do special things for and with Chris. When Skyler was born we again had to take the time for him and Skyler. They both always wanted to be with me & I on a number of occassion had to spend my nights with Kasey in the hospital. Which always broke my heart. It did take a toll on Skyler, but not near as much as it did on Chris cause he had Chris with him.
    It is so hard to be pulled in different directions, but you are very strong, caring and a great mom. Just remember that you need to take a little time for yourself. I know how overwhelming an up coming surgery can be. “Been there done that” My thoughts & prayers are with you & your family everyday. You & your Mom where there for me so much during my time of need and support of being so overwhelmed with everything. I appreciate that more then you guys will ever know. Your mom is the best and what a great support she will be for you again during & after this surgery.
    I love you & wish I could give ya a big hug. Give Abby & her little brothers a hug & kiss for me. Even though they will probably never know or met me I just want them & you to know I am here for you anytime you need someone to talk to.
    Stay strong as I know you will.
    Laurie

    Reply
  • 5. Lisa M.  |  July 11, 2010 at 5:02 pm

    Wow. I want you to know that I am on the other side of this, I am a 40 year old woman who has TOF. So far, I have had 5 open heart surgeries. The first three were for the repair of the TOF. For the most part it was a successful, and I am told that I am repaired! However, I do have a porcine (yes, pig..) valve to replace the pulmonary valve. I am on my 3rd pig valve and will have to keep having those replaced. They have been lasting 10-12 years.
    After I read what you wrote and wiped away the tears…I was thinking that your daughter will be just as blessed as I have been because of her family (and Doctors). I don’t think that I would be here now if it was not for my parents. (I am an only child) They are my rock. The love and support given to me everyday is what kept me going and fighting through each doctor visit or hospital stay. The support I got from my parents was just letting me be a kid and not treating me any different. I was not treated as a “sick” child and they let me go until I knew that it was time to slow down or to take a break!
    You have a lot of years ahead with your children and the biggest thing that I can say is to just take each day as it comes. Your daughter will grow into an adult and always look back and know because of you and her brother she had reasons to fight and to go through everything that she will have to go through. It is worth it. I know that she will be fine. I was born in 1970 and my parents were told that I was not going to make it. Well, I showed them and from then on out my parents knew that they couldn’t treat me like I was not going to make it!

    I don’t know if any of this helps you, but I just wanted to let you
    know that there are adults out there that are a sucess and lead pretty normal lives. I do have more surgeries to look forward to but I just go on like everyone else and am truly thankful for my life and my family.
    This might sound weird, but be thankful for your daughter and her TOF. I am a better person because of it, and I know my family is too. As an adult with TOF I want you to know that everything will be fine. You have many years ahead of you together and she will be truly thankful that she has you and her sweet brother. Thank you for making me remember today that I really am glad that I was born different.
    I send my thoughts and prayers to you and to everyone who reads this that may have a child or baby with TOF.

    Reply

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