Monday, February 3, 2014

A weekend full of emotion.

Within the last several months we've been contacted by many who have been inspired by our son and his life. Thank you. Receiving these messages are so touching and heartwarming. Wyatt touched the hearts of many. He led a purposeful life by just being himself and it's been clear that he left behind a legacy that is strong. He lived a full life in only eleven years...he somehow knew just how to enjoy it despite the challenges that were placed upon him. I'm not sure how he did it sometimes, but he did. We were witnesses to it.

He was amazing. 


On Saturday we attended the 1st annual Wyatt DeStephano Memorial Pinewood Derby. It was such a thoughtful tribute to our son and we were honored to be present. As we walked into the large gym at the family center we were greeted with a framed picture of our boy. Sitting on the table next to his picture was a large donation jar: the donations from this day will be going to the Hospice center that assisted our family through the last two years.

Wyatt really enjoyed being a Cub Scout.


When he first came home from school wanting to join scouts Bryan and I were a little hesitant. We knew what was involved, including hiking and camping. We joked that when camping he would need to pull along his own little generator behind his wheelchair to run the equipment he needed to sleep. But whatever it takes! Bryan talked to a few local packs and the Pack 20 leaders were the first ones to respond assuring us that they would help in whatever way we needed them to to make things work. That was all we needed to enter into the scouting world.


The picture above is what it's all about, in some ways. Wyatt's in the middle of that pile of boys, wrestling, after a den meeting. A double lumen PICC line in his arm and his drain bags and tubes in there somewhere too. The glasses on his face being the least of the worries. He was a boy first, regardless of his medical needs.


Wy loved all the activities that cub scouts offered and never hesitated in joining in. This past Saturday afternoon the Cub Master stood in front of all the families and spoke candidly of our dear boy. We then were presented with and accepted the Spirit of the Eagle award on behalf of our son. To say it was a little difficult to attend the event and stand on the stage as Bryan spoke to the group about our boy would be an understatement. But Bryan did a great job conveying what this pack of scouts meant to Wyatt and expressing our thanks.


I know Wyatt would have been so proud of it all.


To make the weekend an entire emotional debacle, on Sunday we decided to take a step up that seemingly giant staircase that is laid out before us and we went to the movies. Jilly has been asking to see the new Disney movie, Frozen.


It sounds pretty simple, right? To go to the movies. At one time it was, but we haven't been back to the theater since Wyatt died. We watched a lot of movies the last few years. It was an activity that Wyatt was always up for regardless of how terrible he was feeling. Something silly he really enjoyed, even the last times that we were there, before the movie starts there is a movie reel that simulates riding a roller coaster.

Like this:



Wyatt would raise his hands in the air and whisperly "scream" as if he too was riding the coaster. If there were people in the theater with us he would only raise his hands half way and make a nearly inaudible "scream".  It was so silly, but he did it every time.


I could say I had a great time seeing Frozen, but I would be lying through my teeth. Truth be told, it wasn't fun. I didn't really expect it to be, so there was no surprise there. In fact, my experience was much like the holiday chorus concert. I was the one in the theater, sitting at the end of the row, crying before the lights dimmed and the movie even started. Yep, that was me.

I could list off a few things that started my tears, but the biggest being this time we were all sitting together, just the four of us. I wasn't sitting next to Wyatt in the wheelchair accessible seats, while the other three sat in the row behind us. I didn't need to make sure I had access to his equipment to silence them quickly when they began to alarm or to keep an eye on the amount of oxygen he had remaining. Then as the previews began to play I could imagine exactly what he would say to me, reminding me to silence my phone or telling me "We need to see that!" after every snippet of the next up and coming movies. I gave up on wiping my tears away as it was clearly a lost cause at that point. The movie itself was cute, the story was good, the music was nice. The experience was...well, draining, I guess you could say. But we made it through. It was just another cracked and wobbly step.


It was a weekend full of a varying range of emotions. I'm so, so proud of Wyatt and the legacy he left behind. I'm also so grateful to have the abundance of memories that often breaks my heart again and again and again. At the end of the movie it's found that love is the answer. All you need is love. I believe that to be true. It could be said that the last years we were sustained by hope and love. And now the resulting tears consist of love. My ridiculous amount of tears are made of love so powerful and so pure.  If love wins, Wyatt's life was a blowout.

Today I'll happily accept the quiet snow day that is happening as I write. I've got a batch of apple crisp being made now and the snow is, once again, piling up quickly outside. And I've got a date with the treadmill. 
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