I Did A Thing

There is so little control we have in this world. For most people it takes an earth-shattering life event to remind them every now and again that isn't true.  Everyone seems to be walking around on this planet thinking they have more control than they actually do. Then, suddenly, a friend or family member gets hurt or dies unexpectedly. You lose your job to a layoff. Someone you care about gets cancer or loses a pregnancy. It doesn't happen often, but when it does, it kicks you in your keister and you spend a long time thinking about how it could have been prevented or what you could have done to stop the tragic event. It drives you bonkers and then one day your brain realizes it needs to stop doing mental Crossfit and you go back to thinking you have control and everything is fine until the cycle starts again a few months or years down the road.

With Liam, it feels like this fact is in our line of sight every day. Every day that is a good day is welcomed as an unexpected surprise because we know there is not a whole lot we can do to control when the bad days roll around. Sometimes, it doesn't matter how hard you work or how closely you watch- problems and heartache show up like a stray cat one day mewing for milk and bucket loads of cash at the vet and then you have to figure out how to deal with the aftermath.

So, we don't have control over most things, but we do have control over some things and that's what I want to talk about today- the ways we find to cope by doing something. Sometimes we do something to keep us occupied and sometimes we do things to feel better. Occasionally, we do something that helps.

Shortly before Liam went in for his second surgery, I went searching for children's books that spoke to siblings about what was happening to their baby brother/sister. To my chagrin, I found zero books on this topic for toddler-aged children. Maybe it's because siblings get forgotten during these harrowing seasons because the focus is squarely on the child having the procedure, but our daughter has a curious mind and she is highly sensitive to what is going on around her. She needed a medium she understood and enjoyed to process what was happening around her. Books were the perfect tool, but there were no pre-made tools to buy. So, I thought to myself, "I have a BA in Literature and I'm not half bad with words, I'll write a book myself." This was immediately followed by an internal snort and a pessimistic, but fair question, "with what time, exactly?" But, I was coping by doing and doing what needs fixing is my favorite past-time these days. Providing the thing my daughter needed in a time when pretty much everything else in my life was out of control felt really good. 


I am privileged in many ways, and one of them is having an uncle in the mental health sector. He was able to get me going down a path towards publication and one of the requisites to publishing the old fashioned way is to come to the table with the right qualifications. If a book incorporates mental health or child psychology, you need to either be a professional in the field or you need to collaborate with one. I was able to find someone interested in helping fairly quickly and my rough-edged drafts began to look more and more like legit pieces of childrens' literature (thank you, Dana Langston, PsyD)! Privilege struck again when I realized I knew someone who was just getting started as an illustrator and may be interested in my project. One puzzle piece fell into place and then another and another until we had two full books, illustrated and geared towards the very kids who had been ignored up until now, but who desperately needed guidance and attention during one of the most critical times in which a family can be.

I hastily sent them off to FedEx for printing so I could use them for Eliza. It was right about the time Liam was being discharged from his last surgery- no matter- even if I couldn't guide her before, we could use them to debrief instead. Maybe she was just a really gracious 2 yr old, but we read them often, sometimes more than once in a sitting, at her request. Even 10 months past Liam’s last surgery, she will pull them from her shelf and ask me to read them to her. It has felt amazing to see her engaged and eager to read books I’ve written. I didn't have control over much when Liam was struggling in the hospital, post open-heart surgery, but being able to do this for my daughter felt incredibly grounding and I felt empowered for the first time in a while.

As I was putting them together, I also realized this project didn't just have to be for my daughter- nor should it be. Of the 40,000 babies born each year in the US with a CHD, 10,000 will require surgery of some kind in the first year of the baby’s life. 10,000 families per year who stood an equal chance of having older siblings in the home and no way to prepare or educate them on what was going to happen at the hospital, how it would affect them, or even what the hospital room would look and sound like. For that reason, along with others, the illustrations depict children, families, and hospital staff of different ethnic backgrounds so each family can feel represented and children of both genders can see themselves reflected in nurses and doctors. I realized quickly these picture books didn’t need to sit in a cheap, pseudo-book format in my house. They could do some actual good in the real world.

Traditional publication is amazing, but serving a niche group of people was never going to appeal to a big publishing house. It's not profitable for them- these books aren't going to be the next "Pigeon" series. So, it was off to the races to find a way to self-publish. Self-publishing may seem easy, but it isn't. It requires a lot of time researching, getting excited and then getting disappointed with hidden  fees or unacceptable caveats. Oh and the formatting (sooo much formatting) that is pretty much invisible to an author working with a publishing company. All that being said, it's been an incredibly worthwhile venture and I am pleased to say both books are now available for purchase on Amazon.com, complete with their own ISBNs. You can find the first book here: Doctors Help Baby and the second book here: Baby Has A BooBoo. I have named them the “Warrior Sibling” series because the brothers and sisters of these incredible heart babies are incredible in their own way and their fight should also be recognized and celebrated.

They aren't easy to find by doing an Amazon search (thus the direct links) and I'm not going to become a millionaire by selling them. That's not the point and it never was- doing something useful in the midst of chaos was the point and I have to say I feel like that goal was accomplished. It will be icing on the cake if other families find these books as useful as we have. As Liam and Eliza get older and our situation evolves, I can see how the opportunity to write other books to help them understand will pop up. Now that I know how to do it and that I can do it, there will be more.


Here are a couple of illustrations for those interested in previewing the finished product (thanks Maggie French!)