Posts filed under ‘family life’

The Others

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!

May 21, 2010 at 6:12 am 5 comments

I Never Knew I Could Feel This Way

We’ve lived with you for ten years now, an uninvited and unwelcome guest in our family.  We had no choice really–You forced yourself upon us when our beautiful baby girl was born with you altering her perfect heart–breaking it in a sense.  Although you aren’t a guest we would wish to have, I have learned volumes from our journey with you.  I’ve learned about emotions that sounded nice on paper but never really knew what they felt like.  Emotions like grief, anxiety, fear, hope, faith, communion, exultation–just to name a few.

But last night, you taught me a bit about a new emotion, one I have never known with such force until then–hate.  It really is an ugly word.  I’ve never liked it and I’ve never been one to hate anything or anyone easily.  But last night you showed me that hate does live within me.  I guess I could use another word that didn’t sound so harsh, to make myself feel better.  I could call it loathing, dislike, disdain…but really it all boils down to hate.

Abby poked her head in the bathroom at bedtime, while I was helping her little brother’s brush their teeth.

She made the comment, “Today is 31 days from my heart surgery.”  She made the comment so matter of fact, like it was normal.

I acknowledged her comment, using the positive reinforcement we have been using to deal with you lately, “Yep.  Won’t it be great to have it all done?”

She shook her head, “No.”

I could see she wanted to talk.  So her daddy and I ushered the boys to bed and took Abby to her room to talk.  She began talking about how scared she was.  She began telling me that she was scared of being in the hospital, where it is big and scary.  She is scared of being alone, waking up and me not being there.  She is scared of pain…she is scared of so many things.  We reassured her.  We promised she wouldn’t be alone.  We promised that I would be there when she woke up, no matter what time or how long I had to wait for her to wake up, we promised her that the doctors and nurses would make sure she had all the medicine she needed not to be in pain.

Suddenly, she broke down into tears….despairing, grief filled tears.  She sobbed, “I don’t want to do this!  God has promised us that he won’t give us anything we can’t handle and I can’t handle this.”

She layed her head in my lap and cried…and I cried too.  I couldn’t hide behind my optimistic “it’s going to be alright” face.  And at that moment I HATED you.  I hated you for picking on my sweet daughter, a girl who lights up the room when she enters.  A girl with the faith of Job.  A girl who doesn’t deserve to be bullied by you.  You broke down my defenses and made me feel that I was letting her down.  When she saw me crying she got even more fearful and began questioning, “Mom, why are you crying?  Am I going to be okay?”

You.  Picked.  On.  The.  Wrong.  Girl.  You see, I don’t believe in chance or fate, and I don’t believe you are with us by accident.  You are our trial and although Abby looks small and fragile…her soul and heart is as mighty as they come.  She will overcome you along with thousands of others who are fighting against your ugly devastations.  You hurt and rob and take…but we will never stop fighting against you.

Although you have taught me so much about life and living and feeling and it is true, I wouldn’t trade those lessons, I don’t want you to hurt others.  I don’t want another mother to carry the grief of losing her child to you.  I don’t want other parents to suffer through surgeries and hospital stays.  I don’t want another child to ever have to say through sobs, “I don’t want to do this!”  So, for now, consider this a new level in our journey with you.  I accept this trial you have thrown in our way…I will learn from it and grow in ways I would have never thought possible, just as I have for ten years.  But I will never stop fighting against you, CHD.

May 2, 2010 at 8:24 pm 7 comments


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