Cancelled Plans

On the wall in my kitchen hangs and erase board where I keep our family calendar.  It shows two months.  Right now, September and October are showing and it makes me sad every single time I look at it because I didn't know how sick Ty was when I filled in the blanks on September 1st.  Two more months of fun-filled adventures with Ty and Gavin.  Ty's BIRTHDAY!  Pumpkin picking!  The 10K in Brooklyn.  Mighty Mikey's St. Baldrick's event.  The FOJ walk across the Hudson brain tumor families.  The 'Tunnel to Towers' run in Manhattan.  We had so many plans. 

Granted, after two years of "one thing after another" we are no stranger to canceled plans, but this time it is obviously so different.  Everything is a "last".  Every missed opportunity with Ty is one we can never do again in the future.  Yesterday was such a beautiful day.  The leaves are turning and I remembered how we would take Ty and Gavin for a long drive on days like this.  I told Lou, "today is exactly the kind of day that we would be jumping in the car to drive somewhere with the boys... anywhere... just to get out of this damn house on a beautiful day."  Ty would always joke that a bear was following us.  Then he exaggerated the story further to include a dinosaur.  The last time we were in the car we were being chased by a bear, a dinosaur, a deer, a monster and a ghost.  He always thought it was so funny how I would pretend to drive faster and ask questions.  "Is the bear riding on the dinosaurs back?  What color is the monster?" 

One time last year I was at the supermarket with Ty (his favorite place) and he was reluctant to leave.  Poor kid, he was having too much fun and so happy to be out of our house.  I convinced him that he could pick out a snack for the bear and that we would feed it to him on our ride home.  Ty picked cherry tomatoes and pretzel goldfish.  He was stronger then, so the whole ride home I left his window open enough so he could throw some out the window.  This was something I eventually regretted because I was constantly challenged with the task of feeding the bear - especially after Ty was unable to do so himself - and I worried that someday I would be pulled over and questioned about the cheerios (or whatever biodegradable items I could get my hands on) that were always flying out of my window.  I'm glad I never let that stop me, though. 

Ty and I spent a whole lot of time together in the car.  I needed to keep him entertained.  For those of you who are new readers - Ty had 45 daily radiation treatments back and forth to the city (we live over an hour north).  He was in clinic in the city almost once a week.  We drove to 60 hyperbaric oxygen treatments every morning this summer (also an hour away) and his daily rehab center was an hour away, too.  Now I look back and think of all those miles on my car.  We really had so much sweet alone time together.  We talked about silly things and I think I told him "I love you" so many times he just tuned me out (at least, I hope I told him enough).  Just me and my best good boy in the whole wide world.  My love.  We should never ever be apart.  I can't bear the thought of it. 



Ty in the backseat of my car, about one year ago

So, back to the calendar.  Today was supposed to be Ty's big birthday party.  The big carnival that everyone would have been invited to.  Since Ty wasn't feeling well on his actual birthday, I had hoped today would be a "do-over".  We were surprised with an outrageous birthday cake and an equally outrageous pumpkin today (thank you so much!).  I also received some sky lanterns and wanted Ty to send them off with ceremonious wishes written all over them. 

All of these things made Ty smile big, but I couldn't keep him awake for any good length of time today and that is starting so scare me.  Overall today was a good day, it really was, but I see changes taking place in Ty and it feels more and more real with each day. Like he is becoming more distant. He's starting to slip away a little and I can't believe it's really happening.  In true Ty style, I find it funny to imagine that Ty is in cahoots with God, waiting until things get really bad so he can make his miracle more dramatic :) 

The highlight of the day today was giving Ty a bath and it was pure heaven.  Over the years I have received several bottles of holy water as gifts.  I used to put some on my finger and gently put it on his forehead.  Now I am pouring it all right over his head in the bath.  No holding back now, I'm all in!  It is a beautiful feeling to pour that over his head, say a prayer, and feel like we are bringing him closer to God.  Still praying for a huge miracle. 

Ty needed the bath so bad because he is sweating on and off and throwing up much more often. I think it made a huge difference in making him more comfortable.  Maybe tomorrow he will be up for blowing out some candles and making some wish lanterns.  In the meantime, we continue to make sure all of his special gifts are scattered all over the room in places where he can see everything, and I think that keeps him feeling like the five-year-old kid that he is.  He has so many magical gifts, I see him looking at them all over the room and sometimes he points with his eyes and says "Look!".

Lou and I have become so used to caring for Ty in ways that no parent should ever have to.  We flush and pull needles out of his mediport.  During treatments we stick him with daily needles when his counts are low and he needs his "GCSF" shots. We clean and maintain his G-tube.  I made a chart for his medicine and today, alone, he received 26 syringes of various medications.  We always preferred to do things ourselves (when allowed) rather than have his nurses handle because we want to bring him as much comfort as possible.  Which leads me to our latest challenge.  Lou and I decided it was time to remove Ty's stitches.  (Background: In early September, the plastic surgery team was called in to stitch up several places during Ty's last shunt revision.  We had a phone call last week because we needed to bring him in for an evaluation/to have the stitches removed.  Of course, the plastic surgery team wasn't aware of Ty's condition, so we were advised to work it out with hospice so someone could come to our home to handle it.  Instead, we decided to take it into our own hands.) 

You'd be surprised about the types of medical supplies we've accumulated over the years.  We had a pair of stitch scissors, a tweezer specifically designed with a clamp to remove tweezers, appropriate cleaning solvents for the tools, etc.  Since the warm water softened the scabs and the skin, we worked together to get them out. Actually, Lou did most of the work while I held Ty still and tried to comfort him with soft words.  There were about 30 stitches in his head and another 15 in his shoulder so it took a long time.  What can I say about Ty that you haven't already guessed.  He cried here and there, yes, but he was otherwise SO BRAVE and SO STRONG.  I am so proud of him, but at the same time I'm so sad for him.  Just one more day in the life of this five-year-old.  It's so unfair.  How could this have happened to him.   For most, this might be one of the more traumatic experiences in life.  For Ty, this was a walk in the park.  How is that possible? 

I don't really have a before photo, but here is the after.  The shunt is under his scalp right there on the side of his head and you can't see the incision scar at all!  The other two incisions on his neck/shoulder are a bit red but otherwise looking great.  Ty is super indeed. 

I have so much more that I want to say, but I am overtired and afraid I will miss this window of opportunity to fall asleep.  My sister and brother-in-law are here and I was so happy to spend the night talking, laughing and enjoying them.  I said to Lou, "If we are going to drink wine tonight, one of us has to stay sober in case Ty gets sick in the night or something."  Right after I said that I quickly pointed to Lou, but his finger was already on his nose.  "Not it," he said and I clearly lost (although, I still argue the point that I didn't know we were doing the finger on the nose thing, I was pointing instead).  So, I had just enough wine that I am SO TIRED, but of course I don't have to worry if Ty wakes up :).  Goodnight everyone.  Sweet dreams.  XOXO, love Ty.