Friday, March 6, 2015


Today was a Doernbecher's day. We have been going up there for nearly two years now. We know the fastest route to drive, which parking spots are best, which bathrooms are the cleanest, the quietest and most comfortable places to nurse, the check-in routine for about eight different specialists, the best places to sit on the three different floors we frequent. We know the days of the week and times of day that are the busiest. We know that we will see something that breaks our heart every single visit. We know that we will see people just like us who have this routine down to a science. We will see parents who are new to this, with fear on their faces or blissfully unaware of the days to come. But as many times as we've had these days, and even though we've been doing them for almost two years, there is a part of it that still feels so foreign. Judah is healthy. Josh is healthy. I am healthy. My pregnancy with Ezra was healthy...with perfect blood tests, perfect blood pressure, clear ultrasounds, no causes for concern. And yet this sweet little person came into our lives who isn't so healthy. He has the tiniest smudge on his copy of DNA.

It's hard to wrap our head around it at times. We did nothing wrong. Ezra did nothing wrong. He is fearfully and wonderfully made. And yet here we are. This is our life now. This is his life. A life of surgeries and tests and check-ups and therapies. A life that is so foreign to families who have been blessed with healthy children. I forget sometimes that we are not one of those families anymore. We are still tremendously blessed, but the reality is, we have been forever changed. Forever inducted into this other world. A world that we're trying to navigate as gracefully as possible. Sometimes we will make mistakes, I'm sure. We will share too much about our journey or maybe not enough. We will miss opportunities to educate others or go overboard at times that aren't appropriate. We will inundate your newsfeeds during awareness months but fail to speak up when you use the 'r' word or other hurtful language. We will struggle at times to celebrate your child's good health because we are simultaneously mourning Ezra's pain or challenges.

But we will figure this all out, one day at a time. And what will make us even braver going forward, is knowing you've got Ezra's back. Knowing that you will continue to take the time to *like* our Noonan Syndrome and childhood cancer and rare disease posts to show your solidarity...even for the hundredth time. That you will embrace this new information, that you will start to normalize it in everyday conversations. That you will think about ways to talk to your kids when they start to notice how small Ezra is. That you will accept him, and us, with all of our flaws, however foreign our situation might be to yours. That is my hope today, at the end of this Doernbecher's day. Thank you for reading this post, our FORTIETH Ezra post. That right there is the kind of solidarity I'm talking thank you :) We are so grateful for you coming alongside us on this journey we embarked upon nearly two years ago and for your continued prayers, support, and love.