Things I Wish I Had Known

February 20, 2010 at 5:30 am 7 comments

The world of Congenital Heart Defects is a roller coaster of ups and downs and twists and turns.  Being a parent is hard enough.  Being a parent to a child with special needs and a special heart is like learning astrophysics.  The diagnosis, the fear, the hospitalizations, the surgeries…all of it is overwhelming at times.  We are down the road a bit in this journey with CHD, down the road enough to look back and see how far we’ve come and where the road came from.  Looking back, I see a few bumps in the road I wish I had known before the journey, roadblocks that would have been easier had I been prepared, and curves in the road that took me completely off gaurd.  I share them here.  Every person’s journey on this road is their own, unique and different, but maybe some of my surprises can benefit someone else who is just starting on this road called CHD.

1.  I wish I had known that no one else will fight for my child as well as I can.  When it comes to her health and wellness, her hospital stays and her emotional needs, I know her best.  Doctors, nurses, interns, surgeons…all these people are vital in her care but, I know her best.  It is okay to question a doctor or surgeon.  It is okay to seek a second opinion if I feel I need one.  I do not have to sit by and allow them to dictate her care to me.  It is easy to be so overwhelmed that you just wait and listen numbly,  nodding and trusting so completely that they can save your child that you will do anything…if that feeling arises in the pit of your stomach, telling you that something isn’t right or something different should be done….listen.  The relationship with the cardiologist, surgeons, and pediatrician need to be one of trust and communication.  I went through three pediatricians before I finally found one I trust completely and can ask, any time of day or night, about anything.

2.  Life is too short to lose even a second with a heart child to mourning.  Those who are diagnosed in-utero have a time for mourning and coming to grips with a CHD.   Those who learn of their babies defect after delivery have to mourn at the same time as becoming a new parent.  The mourning often overshadows the joy.  We found out at three days of our daughter’s heart condition.  I cried for days.  I walked around numb and fearful and angry and confused…so many emotions to deal with.  She slept between my husband and I because I was so scared she might stop breathing in her sleep.  After she would fall asleep I would weep, as quietly as possible.  One night, my crying woke my sweet husband.  He asked what was wrong.  I was shocked!  How could he ask what was wrong?  I sobbed out, “I don’t want her to die.”  He looked at me and said, “We don’t know what tomorrow will bring.  We have her with us now though.  Shouldn’t we be happy for the time she is with us?”  I was stunned….he was so right.  What if she was only her a short time and I wasted that time mourning, instead of soaking up every last ounce of joy and love she brought with her.  I still had to work through the emotions of mourning, but I no longer let it consume my every thought.  Instead, I focused on every moment I had with her in my life.

3.  Children with CHD will ALWAYS live with CHD.  My daughter had a very rough open-heart surgery to fix her Tetralogy.  Nothing ran very smoothly and she was put on the bypass machine three separate times.  We were “prepared” by the hospital staff for the worst while hoping for the best.  We were blessed with a positive outcome.  Abby has been told her surgery story time and time again.  How rough it was, how she almost didn’t make it out of surgery, how the surgeon told us it was hard, how they prepared us for her to come out with brain damage….all the amazing terrible circumstances she overcame.  Abby is now facing her second open-heart surgery.  She is ten-years-old and imagine what all those stories have done for her confidence in this upcoming surgery.  She is fearful…fearful of possibly dying, fearful of suffering brain damage, fearful of the doctors not being able to fix the problem…she is scared and part of her fear is my fault.  Her story is amazing and she is a miracle.  I told her her heart story because it is so amazing, however; I wish I had the foresight to see how it would effect later surgeries.  My telling would have been gentler, filled with a focus on the progress and miracle of it instead of on the terrible circumstances she had to overcome.

4.  Others don’t understand, and many never will.  Abby looks perfectly healthy.  She is smart and outgoing and likes all the same things other kids like.  She doesn’t look fragile by any means.  The constant worry and fear can’t be fathomed by others.  Finding out Abby has been exposed to strep throat or the flu knowingly makes me CRAZY!!!!  I want to yell…WHY? WHY WOULD YOU DO THAT?  Then I must remember…she looks healthy.  They couldn’t possibly fathom what strep throat, the flu, second hand smoke, bad air quality…and so many other threats and germs could do to her.  All I can do is remind and ask politely and hope they will respect since they can’t understand.

5.  The heart defect does not need to limit my child.  Having a child with CHD does mean as a parent I need to be extra vigilant and diligent.  What having a child with CHD doesn’t mean is that I need to make her and everyone around remember that she is disabled or fragile.  I know how special Abby is in so many ways, but my relationship with her will never be like anyone else’s.  So, instead of focusing on her CHD with others, I let Abby forge her own relationships her own way.  I inform those who need to know of her condition, like school teachers and others who see her, but I inform them quietly.  I don’t make a big spectacle, I don’t even do it in front of Abby.  She didn’t even  know I told her teachers about her heart until last year.  I NEVER want her CHD to define her.  She has so many amazing talents and qualities….her CHD is a part of her but does not define her.  She is now getting more comfortable with it, she understands it more and even starting to spread awareness and talk about it more with others.  But, until she wants to talk about it and share it and tell the world about it, I won’t force it upon her.

There it is…my five things I wish I had known when the journey began.  All CHD parents probably have different things than mine.  This is a beginning of some of the things I would do the same or differently.  Hindsight is 20/20 but awareness can help!

Entry filed under: Congenital Heart Defect. Tags: , , , , , , , , .

The End of A Beginning A Study on the Stress of CHD Families….or You are Not Alone

7 Comments Add your own

  • 1. Kristine Brite  |  February 22, 2010 at 10:19 pm

    Thank you. As a CHD heart mom who never lived with a CHD child, I’m in a precarious spot. This helped me learn much. xoxo

  • 2. annamarie saarinen  |  February 23, 2010 at 4:37 am

    I hope you don’t mind that I shared these on the 1in100 Facebook page. So perfect. If you ever have a chance, my husband was the blogger when Eve was at her most fragile. He posted something kinda similar back then…

    I was so proud of his strength. Still am. 🙂 So good to know you…I love what you have to say!! Annamarie, 1in100

  • 3. Melissa  |  February 23, 2010 at 5:15 am

    Thank you for this blog!!! My daughter is 3 mos old and has TOF and is awaiting surgery for a complete repair. It’s nice to get advice from a mom who has been through this before.

  • 4. Missy  |  February 23, 2010 at 6:20 pm

    Great post! This is my first time reading your blog, and this particular post hit home. I have a 2 year old with L-TGA, and I find the hardest part of parenting a CHD child is striking a healthy balance between being a strong advocate for my son and being an over-the-top worry wart. You have a beautiful daughter, and I’m happy that she is doing so well!

  • 5. Missy  |  February 23, 2010 at 7:32 pm

    Nikki, thank you for stopping by my blog as well. Of course, I would love for you to keep stopping by, and I will do the same. The way I see it, it never hurts to have more people praying for our kiddos, right? God bless!

  • 6. Samantha  |  February 24, 2010 at 8:25 am

    WOW! What you have written is so much like my story with my daughter. Her CHD is different, but we found out the same way, she slept between us too, and I felt the same way!

    She’s doing so well now, 18 months old, and she picks up on my conversations with people about her heart, and she lifts up her top to show her scars! too cute!

    Good advice about giving her the opportunity to forge her own way without the whole world knowing about her CHD. I am going to have to be aware of when that becomes important to her as she grows up.

    Thank you for sharing! You’re a great mom.

  • 7. Carole Hiebert  |  February 25, 2010 at 3:18 pm

    This is the most amazing post I’ve read about CHD –thank you! My almost 2 yr old has L-TGA and we’re facing our first surgery in the next month or so. Would be mind if I shared this post on my blog? These are all the words I would love my family and supportive friends to read. Thank you!


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