Tuesday, December 30, 2014

Heart Siblings

We are waaaaaaaaay overdue for posting an update. We've had a lot going on but all of that is going to have to wait another day because today, this post isn't about Max.

When Max was in the hospital right after he was born, I became friends with another heart mom. Her daughter, Rylee, was born just three days after Max and both of our kids received transplants (Rylee's mom and I call Max and Rylee "heart siblings"). They've always had a connection and yesterday afternoon, while Max was napping, he kept starting to cry in his sleep which is very unusual. More than likely it's a coincidence, but last night we received the devastating news that Rylee passed away yesterday afternoon.

My heart feels broken for Rylee and her parents. Words can't even describe how sorry I am to hear this.

Our family has been so lucky to know Rylee. Her fight and endurance were nothing short of incredible. We're so proud to call her Max's heart sibling and we will never, ever forget her or stop being inspired by her.

I have to say that even more inspiring than Rylee, to me, is her mom. I am so honored to call Rylee's mom my friend and I have so much admiration for her. I start to lose my mind after 10 minutes in the CV ICU but with the exception of about three weeks, Rylee and her parents lived in the hospital. That's 10 months of the hospital and everything comes with it. That alone makes Rylee's mom a superhero to me but what I admire most about her is how hard she fought for her daughter. Every fiber of her being was dedicated to her daughter, fighting for her, working for her, pushing to make Rylee's life better. You can tell by the grins in all the photos that have been shared that Rylee was a happy girl and she loved her mom more than anything.

Based on the update sharing the terrible news from this afternoon, I know Rylee's mom blames herself. Steph, if you're reading this, I know it's impossible not to blame yourself. You're a mom and what's more, you're a heart mom--we blame ourselves for everything. You have done absolutely everything within your power (and some of it superhuman) for your kid and I am continually blown away by you. I hope you know how incredible you are.

I feel like there's so much I want to say but everything just sounds wrong. Words don't often fail me but they're failing me now. Rylee, we miss you so much. Stephanie and Steven, we're so, so sorry.


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If anyone would like to donate to Rylee's family towards the costs of the memorial service and arrangements, please visit this link: http://www.gofundme.com/ryleeswildride