Thursday, February 25, 2010

A 'Borrowed' Post - From Broken Little Hearts

The blog world is such a great place! I met another Heart Mom, Nikki, today. Her blog Perfect Broken Hearts chronicles her daughter, Abby's, journey. Nikki is an advocate for Congenital Heart Defect Awareness. I look forward to learning more from her and following their experiences.

This is a post from her blog - she talked about "Things I Wish I Had Known". Her words are not only an encouragement to me, but also a lot of feelings that I've had, but haven't been able to put into words so eloquently. Even though our journeys are very different, the heart of the matter is the same. I think you - my friends and family - can benefit from this as much as I have.

I share her words with you, with her permission:

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!

Thanks Nikki!


Anonymous said...

Hey Carole,
Thanks for sharing that!
I wholeheartedly agree that a support network of others walking the same or similar journey is so vital and can be such an encouragement.
Thanks for sharing your boys with me last Saturday. I had so much fun with them! It was so good to get to know Nate a little more! He's such a sweetheart!!
Praying for you,

Emmett Joseph said...

HI, Carole! Thanks for stopping by my blog this morning. It is always nice to meet another LTGA parent-there aren't many of us, are there? :) Your boys are adorable! Emmett had a PA banding done at 11 months and a tightening just before he turned 2. He is headed down the path to have a double switch next year. Are you planning the same for Nate?

Anonymous said...

Thanks for sharing this Carole. So glad you can connect with other families going thru similar issues. Blogs are so great for this.
Hugs to you!!

Anonymous said...

Hi there, I know you have no idea of who I am but I came across your letter from Nikki and the memories of our CHD baby brought back a flood of emotions. Our story happened 30 years ago but as I read I realized that emotions are the same today. It's sooo frightening when the dr sits across from you and tears your heart into a million pieces and the fear almost suphacates you. We had a blue baby and whenever people commented on his color I was so beaten down with sadness and often felt myself getting very angry. When Job said "I had heard of thee by the hearing of the ears but now my eye sees thee" he described me to a tee. I am praying for your little Nate. I can tell he has the best family to back him up and Jesus to carry you all through your journey of love. You have another prayer partner Nate..
Love and Prayers

Karen said...

Thanks for sharing that. That post has very familiar feelings for me, even though Madelyn had CDH not CHD. The blog world helped me cope while I was pregnant and expecting an uncertain out come, and it has also help me have insight now in raising a CDH child. We are hoping all the best for Nate.
Praying for you and your family,