Thursday, February 23, 2012
Pete and Mary, my cousin and his wife, will never be the same. They are bereaved parents and they are broken. Today would have been their baby Remy's first birthday. Their situation is one that I can imagine more than most because I have come so close to being in their shoes so many times, and because I live in the constant fear of Ty suffering a relapse. Bereaved parents suffer every single day of their lives from a throbbing wound that will never heal.
When I have the rare opportunity to run to the supermarket or the pharmacy without Ty, I feel his absence the entire time. There is a heavy, fearful awareness that the most important thing in the world to me is simply missing, even though I am perfectly sure that he is safe at home. (Don't get me wrong, those feelings of absence occur in whispering nanoseconds that are quickly replaced with feelings of sheer freedom :) ).
If I ever lost my Ty, I don't imagine I would ever stop looking for him in my rear view mirror. Ever. Life would not "go on". I would not recover. I would be forced to live in a new, brutally painful reality. I don't plan on ever going there, but that decision is out of my hands.
I wish I could hug Pete and Mary right now, and every parent I know who lost a child. Over the last 18 months I have gotten to know way too many parents who have gone on to lose their children to cancer. So, so many. It has to stop. Pediatric cancer awareness needs to improve, drastically; and funding needs to improve, drastically. There is so much tragedy and so many young lives lost due to accidents and illnesses. It makes me so upset to think how the ugliest illness of all, cancer, hasn't been stopped yet. WE HAVE TO STOP IT! Lou and I will never stop asking for your support and we have some future fundraising activities in the works that we hope you can participate in Even if the only support you can afford is prayers, positive energy and sharing Ty's story to spread awareness - we are eternally grateful beyond words.
Here is the bereaved parent that I talk to every night. During my most painful days I have felt her arms wrapped around me as I wept. I really have. I am so grateful because without talking to her, I don't know how I would have gotten through some of those days.
Ty's continued improvement
Over the past few days, Ty has been eating really well. We have had a lot of "fights" that are resulting in improved habits! It hasn't been easy, but the tough love is paying off because he is now happily eating strawberries, noodles, buttered toast, chicken, turkey roll-ups, yogurt melts and yogurt smoothies. He has slowed down on the apple juice, the cheese :( and the fruit snacks. He is currently obsessed with blue raspberry Sour Patch Kids, but he only gets two of them as a reward every time he eats a substantial amount of real food. I feel good about this. He is getting stronger! Lou is the one who decided it's time to get tough (I'm much more of a softie) and he was right. The Etoposide doesn't seem to affect his taste as much at the reduced dose he is on, and Ty has proven that he is willing to reintroduce some new, healthier foods. We are thrilled!
My friend Linda came all the way from Rhode Island for an overnight visit yesterday and she hasn't seen Ty since he was in the hospital in June. She could NOT believe how well he was doing. She couldn't stop talking about how strong he is, how well he played with Gavin and how he was able to mobilize around the house by "scooting" or holding my hand. To see how blown away she was reminded me of just how amazing Ty is and what a long way he has come.
The reason for her visit was to join me in accompanying one of our great friends (and one of Ty's biggest supporters) to an MRI in the city that evening. I am not writing to share the medical details or anything... the reason I am sharing is just to reflect on how great it is to get together with friends. It doesn't matter how much time goes by, I am always so comfortable and relieved to be in the company of people who know me best. Sitting in a waiting room at the imaging center during our big night out in NYC proved to be absolutely hilarious. We just talked and made each other laugh and it felt really, really good. Thanks girls!! Oh, and I finally got to see for myself what all the hype is about - Pinkberry truly is totally awesome.
I also had an overnight visit earlier this week from my oldest, bestest friend, Dawn, and her twin baby girls. I am so happy that we spent so much quality time together. She is also my first cousin and Pete's sister, so naturally we talked a lot about the loss of her baby niece. I hope I said the right things... there really are no words other than "I'm sorry." My friends really come through for me and I am so grateful for all of them. I hope I was able to return the favor a little bit this week.
Ty hasn't been sleeping as well as I would like (eek! - the nerves) but I am feeling better about it since my last post because I did not suspect any head pain the past few nights. He just seems a little uncomfortable at night and that could be anything. As Lou said after Ty cried out last night, "We only have one more week of stress and anxiety, then we get six whole weeks of bliss before the prescan stress begins again." To explain: Ty gets an MRI every two months. This will go on for a year or more, until it gets pushed back to every three months, then every six, then annually.
Goodnight everyone. More to share tomorrow. Thank you, as always, for keeping tabs on Ty and the rest of my family. Kisses from SuperTy! Love that face :)