Finding strength in the moment

I stood there and watched, my heart barely beating in my chest. Her little legs stepping up onto the box. Amazed with her graceful, surefootedness, not showing a sign of the weight she was bearing. The once vibrant, now muted from use, frock covered most of her little body. Heavy with the lead inside, but undeterred by the little body under it. She silently listened to the instructions.

“Place your hands here”

“Move you head here”

“Bite down like it is a cookie”

She complied with them all. From my vantage, standing in the doorway, I could see the wild inside of her being quelled. Self-restraint. Such a strange thing to see in a five year old. But then again, she has been full of surprises since the moment she was born.

In a flurry the staff exited the room. Stoically she stood there. Her hands exactly where she was told to leave them. Frozen in that moment. The small room looked so much bigger then it was just a second ago. Just outside the threshold my body remained still and imposing. But my heart, it was in that room with her.

“I am right here, you are doing so good, I am so proud of you my little one.”

I spoke to her in my calm, metered tone. She smiled, just a little as to not hold her position. But that smile, it was for me. She knew that I could see it. Then, a moment later there was a whirring sound. The device began to move slowly around her head. Then there was… the cry.

“Daddy! No!”

I could hear the fear, and it tore through me. My heart lurched as it began to beat again. Adrenaline flushing through my veins with a fiery burn. The attendants shut off the panoramic x-ray machine and I rushed to her. She jumped into my arms, the added weight of the lead vest being only an afterthought. The smile gone from her face she held me tightly, I could feel the tears soaking though my shirt, into my soul.

She tried to be brave.

For her entire life my daughter, Zoey, has been showing the world how strong and brave she is. She has not had a choice in the matter. But being so little, and having a machine move around her head was too much. Heck, even I hate those things. But, it is also in this moment that she showed be what she does best.

Finding strength in the moment

While the x-rays did not happen the way that the doctors had hoped, something amazing happened in that room. My daughter fought all that was in her, casting aside every reasonable fear. She stood on that box, and she listened. In that moment, she dug deep and found her own strength. Perhaps she knew that it was in her, perhaps she did not.

In addition to this, she has, yet again, helped me find strength as well. It is a daunting task, this role as a parent. Further complicated by things such as Craniosynostosis, it is a real struggle some days. The worry and fears that I have about what the future will be like for her is, well, there have been many sleepless nights.

It is an odd thing to be in a position that my daughter is showing me that I can be stronger than I think. But it is reassuring that she is going to do so well in life, digging deep, and finding strength in each moment.

Live big, love bigger, and be kind, always.

The Long Awaited Physician Survey

Some time back we posted a physician rating survey in preparation for Craniosynostosis Awareness Month. Well, here we are at the end of the month, and I am just now getting to where I have something that I can post. We learned a great deal in this exercise. Most notably, how NOT to do a physician rating survey.

We had over 100 submissions from all around the globe. With very few outliers we were happy to see many high ratings. It seems that there is a high regard for the physicians that are helping our little cranio kids. I had high hopes of taking this data, and creating something beautiful. Sadly, because of the way we asked the questions, this is not the case.

Looking forward, we are already in the works for taking what we have learned, and making something better. We really feel strongly in empowering other cranio families. We know how important the doctors we chose are. It is a decision that is, quite literally, life changing.  However, we must provide something for those that have submitted. Not only as a way to say thanks, but to show the baseline of what we are doing.

About the survey results.

So, below, you will find a link that will allow you to download the scrubbed results. We have taken out the identifiable data, and have combined results into fewer entries. We are not sure if this will help, but it is something. I am certain that we will remove this link in the months to come. Assuredly by the end of this year. But, keep your eyes out for a new survey early next year. One that will be easier for those filling it out, and provide better data on the back end.

Thank you, again, to those of you that filled this survey out. You are helping us create something awesome.

Also, for those that took the Craniofacial Acceptance Month Quiz, thank you. Your results will be out early in October.

Live big, love bigger, and be kind, always.

 

Get the data here.