Today was a rough day for Lou and I. Ty is having more and more trouble getting his words out, and we are having more and more trouble understanding him. We weren't able to capture any big, genuine smiles today - probably because they were few and far between - but we still made sure to take some pictures of our most beautiful boy. At one point, Lou was just staring at Ty and started to talking to me about just how perfect he is. Everything about him. His lips, his smile, his eyes, his totally awesome hair. Thank you for all of your reassuring notes and comments. You're right, we will never forget the perfect curve of his shoulders, the cute little chip in his tooth or the freckle on his foot. We will remember the sound of his laugh and the feeling of his arms wrapped around our necks at night. But, my God, how we are going to miss all of those things.
I will never in my life stop longing for his physical presence. Not for a single minute and this I know for certain. I am not even sure Lou and I will ever be able to sleep without his warm body accompanying us. I can't imagine it without succumbing to a mountain of tears, so I try not to think about it too much (which is pretty much an impossible feat). I will be forced to experience it soon enough, so I am trying to keep myself busy with my "cleaning house" and doting on Ty's every need.
My favorite part of today was when I found him in my arms, and he wanted to stay there for a while. I just walked around the house with him, my hand gently caressing his back, his hair, his face, and after such a long time being unable to hold him it felt almost as good as the day he was thrown into my arms for the very first time. Then, it got even better. He allowed me to take him outside. We walked all over the yard and I pointed out to him how some of the leaves are turning red already. I didn't even think he was listening because he seemed a little out of it, but when we got to the other side of the yard and I was showing him his swingset, he asked me "how come there isn't any red over here?" It took me a long time to figure out what he was saying, and he was getting so frustrated, but when I finally realized the word he repeated over and over again was "red" then it all made sense. I told him that we will have to plant him a beautiful tree with red leaves in that very spot and he thought that was a good idea.
After that, I walked him over to a bench and I told him we should sit there and have a date. He knows this already, but I explained to him that a date is when a boy and girl really like each other and they want to spend some private time together. He was the best date ever. We sat there and enjoyed the fresh air for several minutes. I smothered him with hugs and kisses, relishing the softness of his skin on my lips. The warmth from the crook of his neck against my face is pure heaven. Ty looked up to the sky the entire time and I think he was getting lost in the beauty of the leaves in the trees and the clouds above. It was very special and I hope there is a lot more nuzzling in my future.
For over a week, Ty hasn't been able to tolerate being held or moved around much. He hasn't even sat upright since last Saturday. Today, both of those things changed out of the blue. Ty's secretions have changed from a constant drool to a deeper cough. Neither of which are comfortable for him, but since the drooling has diminished he has been able to breathe a bit better in the upright position. I can only imagine how good it must have felt for him to sit up on the couch for 1/2 hour or so. I could have carried him all day without a single ache or cramp. I have been carrying him for so long, my back and shoulders were always burning. The pain was constant. After this week-long break I didn't feel anything but pure joy and comfort with him in my arms.
I mentioned that he wasn't happy much today, but that's okay. He wasn't overly sad, either. I think he is a little uncomfortable, a little bored, a little confused and a little pissed off. He gets so angry when we can't understand what he's trying to say. And, with the increase in morphine it only makes him slur his words more and it alters his mental status a little so he might say things that are even harder to decipher. This is our biggest challenge.
Then there is his desire to eat. The last thing Ty put in his mouth was a tiny sip of a strawberry milkshake last Friday (at the Palace Diner - hello Marist!). Yesterday he mentioned that he was hungry and wanted to eat something for the first time since then, but the lollipop lick that I offered (because his weak swallow can't tolerate any real food) just wasn't appealing. Today, however, he did try it a few times. He seems to still enjoy the sweetness of candy, but his ability to lick and taste is so incredibly limited. Instead we started using the "green sponge in ice" to wet his mouth and make him more comfortable. Anyone who has cared for someone in a hospital setting probably knows what I'm talking about. The green sponge today reminded me how far we have come on this journey. I used them a lot back in September and October of 2010 - when Ty came out of surgery with glue coating his throat and again when the chemo destroyed the protective lining in his mouth and throat. I brought home a slew of them and never really needed them since. Even when Ty had thrush or other common side effects from treatment - he always hated and refused the green sponge. Now he asks for it and it is bittersweet. He isn't fighting me about it anymore, he has embraced it.
Why is cancer allowed to happen to children? My son has been through so much. SO MUCH! He is a miracle among us. I am so grateful for him and I will never stop asking for one more miracle... never... but unless he's going to walk off that couch and be freed from pain for the rest of his time here on Earth, then he deserves all of the pure beauty that is waiting for him on the other side. Please don't let his suffering drag on any further. I want to enjoy every moment we have left with Ty, but I'm so scared that it is going to get harder and harder for us to keep him smiling - and that is what he deserves. Ear-to-ear smiles for eternity. Nothing but pure happiness for our sweet, loving boy.
|Ty in his hospital gown on September 15|