I can’t change what happened, and my regrets will never go away, but I do agree and believe you all that Ty knows how much I love him, that he could hear me when he was asleep right into his final hours. I even believe he was listening as I read him book after book after book throughout the entire night after he passed away and lie cold in my bed. I felt calm, as if he was still in that room with me, and I couldn’t think of any other way to let him know that it was time for peace so I read to him. The coroner wasn’t coming until morning, so Lou and I had one last night with him resting between us. I remember feeling so scared knowing that it was the last time. I thought I would never be able to sleep again without him there. Even that night, obviously I couldn’t hold him or curl up with his arms wrapped around me and the finality of it all was and is torture. I just looked at him, cried to him softly, kissed his cheek, touched his hair and whispered in his ear into the wee hours of morning. At some point I drifted to sleep for an hour or so. I will always struggle with those memories because they were obviously the saddest I have ever/will ever experience, but there is also so much beauty and perfection in how Ty left this world.
I am very proud of what we have done to honor him over the past four months. The TLC Foundation has the most wonderful volunteers and dedicated interns who are helping us to make a difference in this very long, but very frustrating battle. Frustrating because, for example, the implementation of the government sequester resulted in enormous budget cuts across the board, including healthcare. Childhood cancer research will take a huge hit, and it was already grossly underfunded. These are huge steps backward and it is a nightmare. The effect this will have on pediatric cancer research is nothing short of horrifying. The unexaggerated truth is that more children are going to die now that research is being cut. There are kids who are clinging to hope as they pray for new treatment options, just as we were. Parents who are trying to keep their children alive until new, promising options become available. Much of the existing research and progress being made will now come to a halt. Future research will not be funded.
As a last minute resort, I pulled together a press release to express how incredibly serious this is when it comes to childhood cancer and shared it across a wealth of national broadcast media outlets. No surprise that they steered clear of this, but how I wish someone of influence in the media would embrace this cause and speak out on behalf of our children. We need so much more people to get behind our children and fight for them. The good news is that the people whose eyes are already open, like each and every person who reads this blog, are powerful and passionate and determined to make a difference. Thank you.
Over the weekend, our friends at DV Depot and Big Hungry Bear Productions donated their equipment, time and talent to tape footage for our upcoming launch of The Muddy Puddles Project. We wanted to create a video that we could leverage to share Ty’s story, raise awareness and announce the project. We are working so hard on the foundation and everything involved. We can’t wait to share updates with you all on the partnerships we have been exploring, the research investments we are looking to fund, upcoming fundraisers and the increased media coverage we have secured in support of the general awareness initiative. In just four short months, we have accomplished so much thanks to all of you.
Friday was a crazy day for me so Lou picked up Gavin from preschool and spent the entire evening with him. That night he shared with me a conversation they had, and it made me cry a couple of those big tears that are simultaneously happy and sad.
“Do you remember when Ty could walk?” Lou asked Gavin.
“Yeah,” Gavin answered, looking around at his toys and seeming very distracted.
“Do you? Really, Gavin? Do you remember when Ty could walk?”
After a few seconds of looking disinterested, Gavin said softly “Come here, I want to show you something , Daddy.” He took Lou’s hand and pulled him into the den. He sat on the floor and started scooting like his brother used to do.
I hope he never forgets those days with his big brother.