As I've said over and over again, Ty's journey brings out the absolute best in people. If I were to make a list of the random acts of kindness that have been extended to our family, it would take up pages upon pages upon pages.
Saturday night was certainly no exception. Lou grew up in Mahopac, NY, and a bunch of his high school friends hosted an amazing benefit to support the Mahopac "Relay for Life" in Ty's honor. I never thought we could pull it off, but Lou and I were able to attend thanks to his wonderful parents who bent over backwards to entertain our demanding little boy while we were out. As you all know, Ty likes to "party all night," and that night was no exception. I don't care that Ty was up until 1AM, it was worth it for Lou and I to get out for a few hours and socialize. Thank you so much to all who attended the event at Red Mills Pub, with a special thanks to Jackie, Sally and all of the others who helped make it such a success. We were so honored and if anyone has pictures to share I would love to post them.
We plan to attend the relay on June 4th if all is well with Ty, and we have our fingers crossed that he may even be able to participate in the opening "Survivors" lap. I am really looking forward to that. I think it will be very special for Ty and all of us. Ty is feeling good. His pain meds are reduced, his nausea is under control (for the most part), and his willingness to exercise and practice is improving. And, despite his ups and downs, he definitely laughs more easily these days.
Not sleeping is not good for any of us. On top of that, Ty has been so incredibly emotional I'm not sure how to help him sometimes. For example, today I was driving him to the toy store for a special treat and at one point he just screamed the most piercing scream from the backseat I almost swerved off the road. In a panic, I asked him what was going on, what was wrong, and he could barely speak because he was crying so much. Finally, I calmed him down and he answered me only to say... "I dunno what wrong wit me. I just sad!"
I don't think I have to explain to you all how that makes my heart hurt. In addition to feeling sad often, he is also physically agitated. He complains that he can't get comfortable all day long, and it's as if he wants to jump out of his own skin. I called the family psychiatrist at Sloan Kettering to see what he thinks, but he had little to offer right now. I need to wait and see a while before he wants to prescribe anything to address his sleeplessness and his anxiety. How sad is it that my three-year-old has anxiety problems?
Sometimes when he is feeling this way, he reaches out his strong arm and I know he just needs a hug. That right there is what makes it all okay. I can't wait until the day he can wrap both of his arms tightly around my neck again. I want to pick him up and swing him around into the most giant hug imaginable. Like in a commercial when an adult lifts up a small child into the sunshine. Some day.
It's been a long time, but I had a complete meltdown yesterday. It started off perfectly fine. Our great friends from Long Beach came to visit for the day: Anthony, Yasmine, and their children Eva and Theo. Eva is Ty's age and they have been the best of friends since they were born. Same goes for Theo and Gavin who were born just about 10 days apart. We had so much fun together and it felt so good to have them over and catch up. We love them so much. Ty also sat at the kitchen table in his new booster seat and he made play-doh spaghetti! See picture. He was so happy and Gavin was beyond ecstatic to play with his buddies. I typically keep Gavin in a complete bubble because I'm afraid of germs, so to see him running around with kids his age was priceless. I don't think he stopped laughing the entire time.
My meltdown didn't happen until much later that day, when all was quiet and I was trying to do the dishes while getting Ty's medicine ready for the night. He was absolutely relentless. He just kept crying for me, and screaming whining. My patience was at its utmost limit and finally I reached my breaking point. "What!" I screamed after the bazillionth time Ty called for me... "What do you want from me!?!?!??" I yelled so loud and I slammed down one of his books that I made him cry even louder. Lou told me to go for a walk and I just ran upstairs to the spare room where we put Ty's toddler bed until he gets better and we can move him upstairs. His tiny little bed is the same size as a crib mattress and it is just the most perfect size for curling up and crying. I have done this before. I don't know why, but I have always been drawn to his little bed whenever I want to feel closer to him and how things used to be. I cried and begged. I told God that he could take my arms, my legs, every piece of my soul. I was begging with every ounce of my being, but I felt so useless because it's all already His. I had nothing to offer... nothing to bargain with.
After a good, long cry, I felt better. I came downstairs and explained to Ty in the simplest terms why I think we should both apologize. Then I said, "I'm sorry" and he made a sad face like he was just going to burst out crying... but instead he said "I sowwy, too." Melts my heart and steals my breath. He is simply the best boy in the world.
This isn't getting any easier, but the Campbell's will continue to roll with the punches.