Twelve Years Without Ty

On this day 12 years ago, I wasn’t in denial, but I still held my wish close. The idea that miracles do happen. Still, when I woke in the morning and looked over at my beautiful boy sleeping next to me, every single bit of my heart and soul knew without doubt that I had just hours left with him. Ty, my greatest gift, the love of my life, was slipping away. 

The desperate plea that rolled through my mind for the years since his diagnosis rang loud in my head, “Please, please, let me keep him! Just let me keep him. Please, please I just want to keep him.” And then there was the angry cry from my heart to LEAVE HIM ALONE! I remember screaming this - SCREAMING - from my car over the years while banging on my steering wheel when I was driving and had nothing else to distract me from the reality of his pain. “LEAVE HIM ALONE!" I yelled. "He’s just a baby! Leave him alone! Make it stop!” Over and over I would yell and scream and cry until the tremendous pressure in my own head convinced me that I was somehow helping him with his head pain by making it my own. 

But death. That obviously wasn’t the release from the pain that I wanted for him. 

Maybe I was selfish. I knew he would never physically recover, but I wanted to keep him and take care of him no matter what. Lou would say, “I don’t want this life for him, he can’t walk, he can’t eat, he can hardly speak anymore…” and I would cry. “Don’t say that!” It would make me so upset when he said that, even though I knew in my heart he was just saying out loud what I knew to be true in my heart. It wasn’t the life I wanted for him, either, but if I was given the choice I would have kept him at any cost.

Twelve years later, I know that a life of pain and being trapped in a body that doesn’t work isn’t what I truly wanted for him. I just wanted the ability to continue taking care of him. Smelling his hair, kissing that warm space where his neck meets his shoulder, hearing his voice, and feeling his love. His love for us radiated from him. It was beautiful and intoxicating to know how much my love and need for him was balanced by how much he loved and needed me. I had such purpose in those five years with him. He was all that mattered. When we watched his soul leave his body, my entire sense of self floated away with him, and I’ve been trying to find myself again ever since. 

I didn’t know or understand grief at the time, but over the last 12 years I have developed a close and intimate relationship with the shadow of grief that follows me everywhere. I have control over it now - most of the time. I can easily distract myself and redirect to force it away, and I can also decide when to let the shadow engulf me. Today is always a day that I allow the grief in. I will sit with it today and I will allow the memories to wash over me because I never want to forget a single moment with him, not even those that are most painful. 

There is a playground in Long Beach where Ty used to play. It’s where his statue is, and Lou and I are on our way there to visit him. The park is oceanfront and it was just three blocks from our house. At the time it was a modest jungle gym with a tunnel, swings, some climbing toys, and an old-school slide that he loved to climb. He was still two-years-old when he was diagnosed in August 2010. Just days earlier I had let him climb the slide ladder without following behind him. I held his arm until he got too high, and letting go was probably the greatest freedom I had allowed him in his short life. I did so against all of my motherly instincts - letting him continue the climb by himself - and my heart was in my stomach until he safely slid down with a big smile on his face. God, I’m so glad I let him do that! Because he never had another chance. 

One of the greatest gifts Ty gave me - and all of us - is perspective. It’s hard to explain to new friends just how far Ty’s story reached, and how many lives he touched. Thousands of little kids have since been allowed to climb the high slide and jump in muddy puddles. Thank you, everyone, for keeping his memory alive in that way. 

Before I end a post, I like to share the signs I receive from Ty. My phone has a rotation of close to 50 different photos for the home screen, but in the last 24 hours this photo happens to be on rotation every single time my phone lights up with a notification, or when I go to open my screen. It’s a sweet one. I’m thinking of you too, Ty. You’re the best good boy in the whole wide world and I love you BIG MUCH.