This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Tuesday, May 3, 2011

Appreciating Life

Tonight I am appreciating life a little more. I am a little more thankful. I am a little more mindful of the blessings in my life. Especially my children. My healthy children. Scarlett included.

Last week, a heartmom friend of mine named Abby had to say goodbye to her son, William aka "Will" succumbed to Congenital Heart Disease. He was one month older than Scarlett. He had numerous health challenges, among them a CHD and Down Syndrome. He struggled through battle after battle, and would come out succeeding time after time over the last two years. Will was a fighter. Will was a miracle.

Last Monday I received news that William had "earned his angel's wings", as we say in the CHD world. He had passed on. He was now an angel. His struggle was over. His fight on earth was done. He was no longer suffering, no longer on a ventilator, no longer connected to tubes and wires. No longer fighting for his life.

Does that mean he lost?

He fought for so hard, so long. and now he is pain free, wire free, tube free. He is free. He is an angel.

I cried when I heard that he had died. I didn't think it would affect me as much as it did, but I'm not ashamed to say that I cried for close to 6 hours that day. I couldn't stop myself. I was heartbroken.  I kept thinking about his mom, Abby. I kept thinking about Scarlett. I kept thinking about how fragile life is, and how precious every child is. To cherish those moments because you never know when it will be your last.

Today was William's funeral. It was very painful. There was a large turnout. A lot of heartmoms were there, and a lot of medical professionals from St. Joseph's Hospital were there. Beth was there. and I could count at least 10 other heartmoms, they even mentioned us during the service. I remember at Ethan's funeral, Heidi saying that she was introduced to this sub-culture of the heartworld (CHD community)

Many people don't know about us.   Heartmoms.  Heartdads.   Heartkids.

How I wish I wasn't part of this community, but I am so blessed to be a part of it, and to have met and know the peole I have met and known as part of being a CHD mom.

It is not for me to question why somethings happen. I will never know why God choses for some children to be born with life-threatening illnesses. But all I know is that parents aren't supposed to outlive their children. So, tonight I pray for Abby and the Olsen family who are suffering. They're missing their baby boy, their baby brother, their cousin, nephew, grandson.

Scarlett lost a heart friend, and we paid our respects today as he was laid to rest.  God Bless you, William Christian Olsen. May you live happy in paradise where your body is made whole again. Until we meet again.

26 comments:

  1. Our heart world is such an inspiration to me in so many ways. We share the highs and ask each other any question because someone has 'been there'. The hardest part of being in the heart world is when a little one earns their wings. That is when it really sucks to be part of this group. It makes me realize how precious life is and shows me how strong our little ones are.

    God Bless you and your family.

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  2. Very well said Melodie. You completely summed up what I've been feeling lately---weird, but grateful to know I'm not the only one feeling this way. I wish I could have been there, but due some prior engagements I wasn't able to attend. Not a minute went by yesterday without me thinking of her and her family. Thank you for being there.

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  3. HI Scarlett
    My name is Jenna and I came across your site. U are an amazing, courageous, strong, determined fighter. U are a brave warrior, smilen champ, inspirational hero, super trooper and a tough cookie. I was born with a rare life threatening disease. Our family is part of the heart world too, but a different situation, my dad has congential heart failure. I was born with a rare life threatening disease. my dad has also battled cancer three times. www.miraclechamp.webs.com
    I love it when others sign my guestbook.

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  4. When you are4 in a tough situation is always helps to join communities that think alike and give inspiration and support to live on.

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  5. Always make a positive attitude towards everything in life. because if you have more faith in life it will help you to move on in your life.

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  9. Everybody goes through a period of time in their life in which they think they’re worthless, their life is horrible, and nothing will ever go their way. For some people they might experience this for days or weeks, others for just a few moments.

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  10. You don’t need to be suffering from depression to find life grey and dismal at times; we’re all prone to feeling stressed, tired, down and aimless.

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  18. Hi, my name is Lara and I am a Heart Mom to a sweet Heart Baby named Mylah. She too has Tetralogy of Fallot. I love that I found your blog, it gives me hope and courage that Mylah will grow up healthy and do well after seeing your sweet daughter doing so well! I'd love to stay in touch! Visit Mylah's blog at: www.mendingmylahsheartstrings.blogspot.com! And I hope you don't mind that I added Scarlett's blog to our Heart Family list on Myalh's blog.

    Lara H.
    Heart Mom to Mylah

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  19. Oh and I totally forgot to comment on the post...sorry, I am so sorry for the Will's family. Life is too short and I too have realized how precious it is after having my own daughter fight for her life! Thanks for sharing other heart family's stories!

    Lara

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