Thursday, May 26, 2011

If you're happy and you know it, clap your hands!

Ty slept fairly well last night, and I am so happy.  When I was in the kitchen this morning, I heard him out in the living room clapping his hands and singing "if you're happy and you know it, clap your hands."  He has no idea just how much meaning there is in the fact that he chose that song to sing… and that he is even singing at all.  It made me smile from ear to ear and shake my head in disbelief over how far we've come.  These are the moments I want to live in. 

 Ty had a pretty rough afternoon, I wouldn't be surprised if we find that his counts have started going down when we go for our clinic appointment tomorrow (white blood cell, red blood cell, platelets, etc.).  It's fine, his counts are expected to go down in order for the chemo to be doing its job.  It's just too bad that it makes him feel so crappy all around. 

Despite his bad mood and fatigue this afternoon, he didn't require pain or nausea medication all day and that is such a tremendous relief to me.  I don't know what makes one day different from the next when it comes to that, but I am so grateful for the days when I am not trying to chase his pain and vomiting with medication.  It is such a horrible feeling being responsible for medicating him and feeling so useless when he continues to scream out in pain, or throw up the medication leaving me uncertain over whether or not to repeat the dose.  It is stressful and a lot to handle!  Those are my most difficult days. 

Tonight, around 7PM, Ty turned around again.  He had two hours of pure happiness that Lou and I just relished in.  He had about an hour while Gavin was still awake where he was laughing at his little brother and loving him.  Then we had an hour alone with happy Ty before he decided he was tired and ready for bed.  He was fully engaged and participated in all of his bedtime stories and prayers.  It was a very good night.  Of course, we all know that since he went to bed early we can expect him to be up any minute now.  I hope not, but I am pretty sure of it.  We've had only a few good nights in the last three weeks and there was never one after the other.  He likes to change it up.  Some nights he stays up super late where my eyes are bloodshot, but then he sleeps until morning.  Other nights he wants to go to bed at 8PM but the endless whining "I can't swee-eeep!" begins around midnight.    And, of course, there are the bad nights that are interrupted with head pain and vomiting.  That is when this whole sleep ordeal is most unfair to everyone.  My poor baby.

Yesterday we visited the most adorable preschool ever.  I can't wait for the day that Ty can go back to school and Gavin can start school so he can interact with other toddlers.  I am sad that Ty has become so shy around other children, but I think a lot of it has to do with how limited he is.  He feels insecure and I don't blame him.  He may be little, but he knows… He knows that everyone that sees him in public cocks their head to the side in sympathy.  When I carry him around he hears how everyone says "Awww, somebody looks tired," but it's really only because he can't hold his head up so he lies on my shoulder.  I don't mind at all, and I totally understand that people don’t know he is disabled or that he has cancer.  And, it's totally okay when they gasp upon noticing the radiation bald spots and the six inch Frankenstein scar from his craniotomy.  Really.  I expect people to gasp.  I expect people to feel sorry and not to know what to say.   It's sad and unfair and upsetting.  But I've noticed that children react with a special sweetness that is hard to explain.  I could tell you countless stories of how sweet the neighborhood kids have been, but I will just tell you about tonight for example.  Three small boys came to drop off a delicious dinner with their mom.  They were two, four and five.  The two year old boy also suffers from chronic health problems related to a heart condition and their mom really knows where I'm coming from, which was so nice!  Anyway, when they were heading out, one of the boys noticed a Mickey Mouse stuffed animal on the floor.  He stopped in his tracks and looked at Mickey.  Gavin's babysitter asked him, "do you like Mickey Mouse, you can hold him?" and instead, he nervously picked up the doll, brought it over to Ty and shyly placed it on his blanket.  How sweet!  Kids watch out for one another. 

Oh, and our little fighter is back in training.  SuperTy is getting ready for the ring!  I am uploading tonight's video from YouTube instead of attaching the file to see if more people are able to view it easily on their phones and i-pads and such.  Please let me know if the file links are better. 

XOXO, Love Ty and family


  1. Hey there Team Super TY

    Just wanted to let you know I am O negative which is the universal donor. I can give blood, platelets and I am also listed as a bone marrow donor with match. I can give at a moments notice and have given in the past many times. Since I work here at Sloan and live across the street I am easily accessable. Please do not hesitate to contact me if needed
    570-977-2937 Brooke

    P.S. The video was much easier to view on my iphone the way u posted this time and thank you!! Ty's arms are getting so strong!! Whoohoo!
    Many prayers being sent your way for a good report today!!

  2. Go Ty, GO!!!!!
    So great seeing him throwing those punches and SMILING!!!!!!!!!!!
    I will be thinking of you today as you go to meet the dr.
    Love & prayers always,

  3. Those arms are so strong! I am so happy to see the change... We are always thinking of you. Stay strong Super Ty, Love Betta

  4. Wow, Ty is just the most amazing kid ever. Cindy, you better continue to blog after this ordeal is over so that everyone who reads about Ty now can also share in the joy of Ty going back to preschool. It WILL happen. I too will be thinking of your family today. Love and prayers from Canada!

  5. Cindy thanks for keeping your spirits up enough to share with all of us the good things that are happening (despite the mostly bad and ugly). It makes me feel good to hear small improvements and happy moments. I'm glad we can hold onto them together.

    I'm blowing a thousand very special dandelion wishes your way ***~~***~~***~***~*****