thankful for this love

Last night I was reading blogs to help me fall asleep and I went to this blog of a family that has a daughter with Hypoplastic Left Heart Syndrome (HLHS). It's a condition where the heart doesn't develop fully and the precious little baby has to go through open heart surgery in their first few days of life. I have been reading this blog of a little girl named Charlotte Hope. Her mom is a cousin of a friend of ours. Charlotte's parents were faithful to update the blog multiple times a day with was procedures Charlotte was having done and how she was doing. I spent one night last week reading the entire thing, going back to when they first learned of her condition at 5 months pregnant. I fell in love with this family, and Charlotte. I thought about her throughout the day. I prayed for her. I googled all these medical terms that they would write about so I could better understand what was going on. I felt so much love for this little girl.

So last night, I checked her blog and she passed away yesterday. I started sobbing. I woke up Ken, and cried some more. I couldn't stop. In fact, I've been crying most of the morning because I'm so sad for Charlotte's mom and dad. I went into Avery's room last night and just looked at her. Listened to her breathe and I wanted to badly just to hold her and never let go. Then I felt so bad for this mom who only held her daughter but a handful of times, and the last time was when Charlotte was hooked up to so many things that it took 3 people just to move her into her mother's arms. Then I just ask, "why?"

I take comfort in knowing that God is in control. I know that He is. Charlotte's life was special. Her life had purpose. But it still breaks your heart. And you find yourself thinking things like, why did Avery get a healthy heart and Charlotte didn't? I don't know how to answer that, I don't think I can. This family wrote this on the blog:

"But in the end her little heart needed to be at rest.We have hope that God is good and that our child is with him safe from surgeries, medicines and procedures."

To know that she is in a better place brings some joy to the situation, but it makes you wonder why she was only given 16 days of life. But to think how many people are mourning this loss; people who the parents don't even know, like me.

I know I feel so much for this little girl because I'm a mom now and I couldn't imagine what it would be like to not have Avery. To not be able to hold her, to love her, to calm her when she cries, to feed her, to swaddle her, to simply stare at her for hours. It makes me realize that my worries and stresses about things with Avery are minor. I can't breastfeed Avery for whatever reason and it breaks my heart. I felt so inadequate when this became a challenge soon after she was born. We did everything we could to make it work, and it was wearing on me. After 7 weeks of working at it, we decided that we gave it all we had, and we needed to move on. For a while there I would cry every day about it. But the Lord slowly healed this frustration and enabled me to focus on the important things: Avery is healthy.

This early morning, as I was feeding Avery, I thought of Charlotte's mom. I was tired and would have liked to be sleeping, but what would Charlotte's mom give to have the chance to feed her baby this morning. Every moment I have with Avery is special, and as Avery ate, she held tightly to my pinky finger and I would have been fine if she never let go. I get lost in moments with my little girl, and this morning my love for her went deeper. I understand more how I love her. Charlotte's life helped me understand.

Her story is powerful: www.charlotteshope.com

1 comment:

Hailey's Mom said...

I came across your blog because I have a google search set up for HLHS. Your post was beautiful, I wish there were more families who understood just how blessed they are to have a healthy child and to cherish every moment.
I lost my daughter to HLHS one year ago on December 2nd. It was one of the hardest times of my entire life. We are currently pregnant with our second child who thankfully is very healthy.
I couldn't be more thankful for this child.
Thank you for your beautiful post.

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