It’s been a wonderful summer and fantastic experience as we work to publish our beautiful book!  We are touched by our community’s interest and support — and there have been marvelous happenings!

When the “Times Call” Calls

In late June, just before my daughter went to the hospital for blood transfusion, our local newspaper covered our “Rockabye Baby” project.  We met the reporter at our local coffee shop, and I admit it wasn’t my best interview.  I was distracted not only by her health and upcoming transfusion, but also by the idea of the press featuring her. We mothers of children with rare disorders find ourselves in a difficult position:  we want to raise awareness of our child’s condition, because it is only by raising awareness that we can hope to raise funding for a cure, but we also want to preserve our children’s right to privacy.

After some deliberation, I agreed to an interview and let a photographer come take some photographs of us.  During the interview, it was pretty clear that the reporter was more interested in my daughter’s illness than in the book.  It was a bit disconcerting, because:

DBA’s not the most important thing about her or this book.

My little girl is a wonderful human being.  While her rare blood condition is remarkable, and her strength through it has been remarkable, the fact that she has DBA is not what makes her special.

Let’s put it this way:  If I could take DBA away from her, I would.  And then what would she be?  Nothing?  Is DBA what defines her?  Certainly not!  She would still be everything we love about her and more:  Amazing. Talented. Beautiful. Courageous. Kind. Goofy. Inquisitive. Wonderful. Strong.

In other words, while there’s no shame in her medical condition, and it is important for us to be transparent about it so that the public can understand its severity and help us find a cure, I also don’t want my daughter to feel like it is her most defining characteristic.

I feel the same way about Rockabye Baby book.

The book is amazing all by itself.  It has an astonishing backstory that includes the story of my daughter’s medical condition — but the book’s value lies far above its backstory.  The quality and beauty of the book stands for itself.

The story was first run online, published on Saturday, June 30, 2018.  Check it out here.

The next day, a story featuring our project was on the front page of the Sunday edition of the the Longmont, Colorado “Times Call” newspaper.

Want to see the online version of the article in the Times Call? Click here.

Rockabye Baby is universal.

In truth, I was grateful for the press.  Every bit of it is so helpful!  The reporter was very kind to devote so much space and time to our story.

And I wasn’t surprised that the reporter chose to focus a bit more on my daughter’s condition than the book.  Human interest stories — especially ones that are rare, tragic, and hopeful — appeal to readers.

However, we don’t want miss the most important point of this story, which is this:  Rockabye Baby is universal.  It is a song of love every bit as universal as the musical notation that accompanies each verse and illustration.

Rockabye Baby is a promise of unconditional love and support.

All of us, no matter what our health or background, need to know that we are upheld and supported by a loving force beyond ourselves. That’s the true power of Rockabye Baby.

It is a lullaby that reminds us — just when things are starting to get scary — that we’re going to be okay.  You, me, her… and your own Littles.  We’re all going to be just fine.

Thank you so much for your love and support!