Dragon Legends

We are having another baby. A boy who is due to arrive at Christmas.

Much excitement surrounds this baby. Jack has already decided where he will sleep, what he will eat and which Lighting McQueen toys drive. He lays his head on my stomach every day and listens to hear what his brother is saying. Although in the beginning he wanted to name him “Jack Too,” he is now pretty adamant that his name will be “Dragon Legends.”

Naming extraordinaire Jack and his new fish, Bug.

On the day Ellie was born and after Ben had seen her settled at Children’s Hospital, he came back to tell me all about her. He pulled a chair up next to the bed and showed me pictures and videos. He told me about what every line and chord connected to her was measuring, what the doctors discussed, about her room and about who her nurses were for the day. “Let’s have another one,” he said.

I rolled my eyes and laughed until I was crying again. “We need to get out of this situation before I can think about having another one,” I told him.

For a year at every opportunity he had, he mentioned having another baby. He loves babies and he is a really good dad. He has a lot of fun with the kids and takes the time to teach them. They both love him so much. But I couldn’t imagine adding another kid to this crazy life we have.

In March, Ellie went in the hospital with pneumonia. She was put on a ventilator and sedated in ICU for three weeks. While sitting in the hospital making decisions and thinking about tough decisions that may still need to be made, something in my head said, “Jack can’t be expected to do this on his own.”

Having another child to help take the burden of one of your kids off of the other may not sound like the best reason to make this decision, but that isn’t exactly the whole picture.

Ellie takes a lot of work. As she grows, we are hopeful that she will not need as much from others as she does now, but we do not have a crystal ball to determine that. Sometimes the decisions we have to make for her are hard. Where is the line that separates well-being and quality of life? Which is the best choice to set her up to succeed? This is a question that I do not want to have to answer on my own and I sure don’t want Jack to have to do it on his own one day.

The past few weeks have me thinking more about how lifetimes can pass by so quickly before we even realize it. I know of a family who very tragically lost a 4-year-old child in what was just an accident while they were vacationing. I know of a family who has been in the CVICU since their daughter was born in January. She was born with nearly the exact same heart defects as Ellie, but this child’s recovery has not produced the same outcomes as we experienced.

I also know so many adults who have spent the last seven months in limbo waiting for an enormous challenge to resolve so that they can finally move on with their lives. Last year, Ben and I both spent months of our lives waiting for things to improve with Ellie so that our family could move forward.

Sometimes just a few months or just a few years is all that someone has. I have seen how grieving parents are able to find purpose and meaning in their child’s life after knowing them for less than a year. At first, I thought that in order to move forward these people must have had to find something positive out of a nightmare.

But the more I learned from these families and saw of my own daughter, I realized that when you are on the outside, you have no idea what is really going on. Until I had the experience of these being the shoes I wear, not a television show that I watch or a Facebook feed that I read or even a weekly conversation that I have with someone, I didn’t see that the decisions and actions happening around me were shaping and determining my life.

I spent so much time waiting for obstacles to move out of the way so that I could start living again and I did not comprehend that what was happening around me was actually my life. All of the hard decisions to be made and extra time and energy that Ellie takes IS life. Her piece of the puzzle is as big as Jack’s and Ben’s and mine and she isn’t any less of our story.

When we started our family, Ben and I wanted to have only one child. Jack was so much fun that we decided we wanted more. Why was I letting the uncertainty of Ellie take that away from what we wanted our family to be? And further, why is it “the uncertainty of Ellie” that follows us around? I’ve got to let that go. I’m pretty certain that she has taken her place at the table and she has certainly staked her claim.

I have no doubt that Dragon Legends will do the same.  

3 thoughts on “Dragon Legends

  1. Heather, You, Ben, Jack and Ellie are amazing. And I can not wait to meet Dragon Legends. I enjoy your writings and being allowed on the inside of your “crazy” life. You guys are doing a wonderful job, Jack, Ellie and Dragon L. are three lucky and blessed children.
    ❌❤️❌❤️ Love you all

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  2. I love reading your ‘typically not typical. You have a very special touch with your writing. So excited about y’all welcoming a baby boy soon. Hoping and praying all goes well- but then again- where would your lives be without precious Jack and Ellie❤️

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  3. Heather, this is wonderful news! You have a family who gives and grows, gets angry and frustrated and also forgives and learns to laugh. In trying times such as these, you could not be a better picture if “normal”. Love you all
    Gigi

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