Lou gave me a much needed break this morning and took the day off to spend with Ty at therapy. When he called me and joked about how Ty pooped in his diaper on the way to oxygen therapy, I thought that it really was just a joke. But then I realized that he really did, and that's amazing. Since early March, Ty hasn't been able to go to the bathroom because his muscles are all so messed up. Every three to four days I give him a suppository and he screams about it every time. He absolutely hates it. So, knowing that he went on his own this morning is something to be very excited about. It means Ty may regain another ounce of normalcy in his life.
Yesterday was a great day. Ty was such a good boy in the oxygen chamber, he didn't cry or carry on. Then he worked really hard in therapy. He was showing off how loud his voice is getting. He was so proud of the movement he is getting in his arms, too. I know his PT and OT were taken by surprise. Ty is usually reluctant, cranky and in some pain during therapy. Yesterday he was feeling really good and it was obvious. He played really well. He had a lot of energy. And, his head control was much improved from last week. I read hope in their faces.
Another sign of continued improvement is the stretching he's been doing. I see him doing a lot of full body stretches when he's lying down and notice how his legs contract, his abdomen tightens, and he pulls his head forward. All of this shows promise for continued improvement. I feel like such a broken record every time I say something like "slowly but surely", "baby steps", or "one day at a time" but for someone in my shoes, these phrases ring more true than you can imagine.
Unfortunately, I have had a lot of practice with getting excited over things like an independent poop, a wiggle of a toe, a sip from a straw, hell - a spoken word. Ty meets so many miraculous milestones, only to be robbed of them over and over again. This kid will never stop, though. He is the sweetest, most amazing boy God ever created. Even if we have to take two steps forward and one step back all the way to the finish line - we will still finish the race as victors. Cancer can eat our dust :)
This morning I was driving for a while, lost in thought. I was thinking about how great it was to have our friends Stan and Beth with us this past weekend. Stan and Beth have been with us a lot through this journey, and they were there for Ty's first steps one month after his first surgery, and again for his first steps after his craniotomy early last year. They bring us good luck! Ty wasn't close to taking any steps this weekend, but I like to think that our good luck charms left Ty with some of the new movements we are seeing since they left :)
When I replay the scene of Ty in his hospital room, wearing nothing but a diaper and taking those first steps on the cold hospital floor during his early days battling this terrible disease, I can't help but cry over how young he was, how much he was hurting, and how much he has endured since then. I allow myself to question whether or not I would do it all over again, knowing what I know, even if Ty doesn't end up winning this fight. It's hard to say, honestly, but then all I need to do is think about the night before. The love I feel when we lay face to face like we always do. Every day with him is such a blessing. An incredible gift. I am the luckiest woman alive.
This is a video we took that night. It was September 12, 2010. How much has happened. How far he has come!
I wrote today's blog entry on Ty's i-pad this morning (one of the first gifts he received when he got sick and it has been a great way to pass time in the hospital). Anyway, I just came across a draft of another post that I wrote on January 4, 2011 but never posted - that was when Ty was still on hospice care. It echoes what I was just writing about, imagining losing our little fighter and whether or not we would do it all over again. I love having this website because it allows me to recall all of Ty's amazing triumphs, and it gives me perspective on where our lives are today. It's not easy, but I will always try to love every minute of it.
I cried so much on my way home from the hospital today. It was uncontrollable. Lou couldn't really understand it either because we didn't get any terrible news from the docs. In fact, it was nothing new. I guess my visit with Ty's doctors just reminded me of the fact that we are dealing with undeniably terminal cancer. I didn't expect the doctors to tell me anything different, but Ty has been doing so incredibly well, i guess I just had this wish that I would hear them tell me they were wrong. That he was actually getting better. That my dreams have come true.
I had a better grasp on the reality of the situation four weeks ago. When the doctor told me Ty had as little as four weeks to live, I accepted it. I think it was because it followed treacherous stay in the hospital where Ty was in so much pain and so weak, every time I reflected on it I reflected on his suffering. But today, four weeks later, I am so much weaker. It's like i love him even more with every passing day (as if that were possible). And with every day, i am convincing myself more and more that he is getting better because he is doing so well at home. When I reflect on him and his health now, I think of him laughing out loud singing songs, or i think of him walking across e kitchen holding daddies hand or playing in the bathtub for the first time since July. Its just harder to accept it now. I am beyond scared of monday's MRI.
A grin rises in my face when reading that last line. As much as I hurt, just look at how far Ty has come. He is a miracle and he will continue to beat the odds. Watch out muddy puddles, here comes Ty :)