Wednesday, June 27, 2018

Worth A Thousand Words

It wasn't until recently that I realized what the saying " a picture is worth a thousand words" truly means. The following photos, a small selection of the amazing gift of a session my friend Mabby Lavoy of LouLou Photography (Alexandria, VA) bestowed upon us, contain a few of secrets.

It took many incredible people to make this, Memphis's first and only trip outside possible. In our case, when we were making end-of-life arrangements (yes, it's a thing and still pains me to say that) two of our nurses discussed at shift change how we could maximize how special his last days with us were. They were able to convince me that it would be no problem (and so worth it) to get him outside. We worked with several other nurses to make it happen, and were accompanied on our outing by two nurses, a respiratory therapist, a doctor and two child life specialists who were instrumental in entertaining Harleigh so she could be a part of our only outing as a family. Also, my friend and fellow heart-mom, Heather, pushed the wheelchair I sat in which we figured was better than wheeling him out on his bed. 

Sarah was our special nurse guest on this day. We met her when we were first admitted to the NICU at Children's National Medical Center and she came down to visit and helped to transfer Memphis from his bed to my arms.

It really does take a village! See that door on the left? That's Memphis's room. He became well known for his room decorations which almost always incorporated sloths. His sloth wall decals I'm told continue to brighten the walls of his last room in the CICU.

Something else that isn't obvious in these photos is that they were taken the day before he would pass, and although we knew at that point this would be his fate, nothing could steal away the joy we felt in being able to do something so normal as a family. 

Something I will never regret is our approach to celebrating every milestone and holiday (no matter how significant) throughout his life. Before that last week we had (validated) high hopes that he would come home one day and slowly (as a sloth does) progress. A window of opportunity in which he was stable and there was enough staff to get him down for a CT scan gave us a lot of soul-crushing information that sends a very powerful message. No matter how things may appear on the outside, it's no testament to how sick someone actually may be on the inside. Simply put, he would never sustain life without all of the support he was receiving. We decided that we had a rare opportunity to make his passing peaceful and loving and since it was inevitable we wanted to avoid the very real odds that something traumatic could happen which would claim him in a way that would not allow us to provide him the comfort we were able to.

We took a quick FaceTime break to include a few very special people in our outdoor adventure.

Many of you who know us know we aren't very religious. We are, however spiritual people and believe the universe, a higher power or whatever it is sends us signs. This is why I think Memphis knew his time with us on earth was nearing an end. He never looked scared or sad. In fact, he seemed quite content. And he left us with a gift to ensure we would be okay. That gift is yet another thing you can't see from simply looking at these photographs...

They're the only ones that exist which include our family of FIVE. Memphis may have gotten his angel wings, but that won't stop him from getting promoted to BIG BROTHER!

Memphis's story is far from over. We hope you'll follow our blog and stay tuned to his Facebook and Instagram pages.