I Never Knew I Could Feel This Way

May 2, 2010 at 8:24 pm 7 comments

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.

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

A Study on the Stress of CHD Families….or You are Not Alone Part II Pre-Surgery Jitters

7 Comments Add your own

  • 1. Samantha  |  May 3, 2010 at 11:45 am

    Thank you for sharing. My eldest daughter is 10yrs old now, and my heart baby is 21 months. I know how my eldest struggles with the things happening in her life, and so I can imagine how my little one might feel when she’s older. Please tell your daughter I think she’s so brave!

    Reply
  • 2. Margaret Cardall  |  May 3, 2010 at 10:53 pm

    Think of those Angels who have passed on with CHD. They are your Angels and will be cheering you on through this time. They will be around your bed comforting, encouraging and wishing they could do it for you. Don’t forget them! They see you and feel your fear, but they will be there for you to give you the courage and strength you will need. The veil between life and death is very thin! Reach out. They are there!

    Reply
  • 3. vicki wardell  |  May 4, 2010 at 4:49 am

    You know we never understand all that it takes to weather the storm until we have been there…and even then our journeys take us in different directions…I think anger is a normal part of the process…you go through so many emotions trying to deal with all that this disease entails… let your emotions out…when you have a chance to vent…perspective comes in…and you come to realize just what you have done and what you will continue to do…It really will be okay…at sometime you will look back on this time and wonder how you ever did it…we have survived open heart surgery 3 times…Many lessons along the way…many questions…but always overwhelmingly comes the gratitude of knowing Who we are and Why we are here….Love you guys…Let Abby know that it is okay to be scared…she can do this even if she is afraid…

    Reply
  • 4. Jill Jarvis Badger  |  May 4, 2010 at 5:36 am

    Nicole! Your words are so powerful and moving I’ve been sitting here crying while reading your post. I am so sorry you have to go through this trial. Your pain is so deep. I am hurting for you and praying for you. I pray that your pain will take you to understanding. The love we have for our children is incredible. What a Supreme Being to let us feel this love. He loves her and you so much more! Hang on! He is with your sweet family.

    Reply
  • 5. McKenzie  |  May 5, 2010 at 6:30 pm

    Nicole,

    I sit here in tears as I read these words from your heart. Not just two nights ago my daughter Peyton sat in my arms crying…we had the exact same conversation. And I too felt the hate. I hadn’t felt it quite like I did that night. When Peyton was so full of fear and willing to share just how scared she is with me. We don’t know when she will have her mitral valve replaced…within a year or two. But it will be sooner than we had expected. Please tell Abby that she will be in our prayers and that she isn’t alone. Here are some big (((HUGS))) from one heart mommy to another. Thank you for sharing this…I don’t feel so alone either now! Peyton wants to send Abby a card so as soon as we can, we will get one to her.

    McKenzie and Peyton (9 yrs)

    Reply
  • 6. Staci  |  May 15, 2010 at 4:42 am

    I found your blog through Annie’s. I am at a loss for the conversation you had to share with your daughter about her life and death. I don’t know what else to say except that I will keep you in my prayers.

    Staci (angel Bridger’s mom)

    Reply
  • 7. Mia, mummy to be to a brokenhearted baby x  |  March 14, 2011 at 4:19 pm

    I recently found out at my 20week scan that my baby girl has TOFPA And a list of other heart defects. I’m devastated by it and your words moved me immensely. I’ve been worrying, how will I cope with all her problems that she will have to face, after reading your words I know I will just have to and the bigger question is how will she. My thoughts are with you all x

    Reply

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