All fresh and clean

I wish I saw this coming sooner.  Maybe I did.   For the past three weeks I had been feeling so incredibly heavy. I can't explain it, I was just sad, sad, sad... before anything really changed in Ty's clinical condition (and that is out of character for me, to get so down in the dumps).  I wonder if it was my instinct knowing that the other shoe was about to drop. I debated whether or not we were doing right by Ty with every dose of chemo I administered. I watched him on the couch, unable to feed himself or hold his head up and I thought, "if this doesn't get better for him, what are we fighting for?" The next thing I know we are rushing back to the hospital on Saturday worried about intercranial pressure and another possible shunt failure. It all happened so fast.  When I think about all of the things I want to still do with him I get lost in a fog of regret.  Why didn't we just take him to the Bronx Zoo instead of talking about it all the time? 

And it's not just the big things that I want more time for.  Do you know that I can't remember my last trip to the supermarket with Ty?  It's making me insane.  Like trying to remember what you had for lunch yesterday.  The supermarket was his favorite thing (until it was replaced by the Candy Store).  It was practically a daily ritual.  How come I can't remember it?  Who was at the register?  What candy did he pick from the candy aisle?  I don't know!!!  I want pictures of it.  I want to remember every second of our last trip to the supermarket and I just can't.  This terrifies me because it makes me think that all of these precious minutes with him will fade away from my memory like yesterday's lunch.  What a horrible thought. I don't want to be left with the painful memories that I wish I could forget.  I want to remember the supermarket. 

I have been taking a lot of pictures since we got home, that's for sure.  I also came across a half-eaten lollipop in my fridge (to avoid ants in the cabinets, I put open candy in the fridge).  I know it's silly, but I kept it there for Ty.  Not just so he can eat it some day, but because his adorable little mouth was wrapped around it at one time and i wanted to hold onto that.   

Today I gave Ty a bath.  Everyone was worried about the idea whenever I mentioned it these past few days (because of his trouble breathing), but I just had to do it.  I am his mother and I just needed to get that little man of mine submerged in some warm water.  I needed his beautiful body to be fresh and clean after days upon days sweating and drooling.  I needed to feel his warm, clean skin.  I needed to wash off the damn glue that was all over his chest and abdomen since we pulled off the sticky leeds after our stay in the PICU (and several other bandages). 

When I suggested it to Ty, he refused at first (this is almost always his reaction).  Then I told him I would take his bath chair into Mommy's big tub instead, to which he smiled and whispered "I want to play with my cars."  Ty has a bath toy that floats on water and has ramps for his Hot Wheels to fly down and into a little plastic boat.  I used to let him and Gavin play with it together whenever they took a bubble bath in my tub (a special treat).  He hasn't been able to play with it, nor has he asked for it, in about six months.  I was very uncertain how it would all work out, but I prepared his tub and set up his car set.  I don't think that this will be his last bath, but I don't know for sure and I certainly won't deny him anything.  Bathtime was totally stressful, but all-in-all it was a success.  First I relished in caressing his skin with my best baby soaps.  Then I helped him to drop his cars down the ramps and caught them in the plastic boat for the grand finale.  My beautiful, clean boy.  Can you smell him?  Pure heaven.  I put nana blankie in the washer/dryer too.  All nice and fluffy for my Ty.  Bathtime was a blessing.  It always has been my favorite time of the day with my boys (granted, sometimes after a long day at work bathtime also meant it was late enough for my first glass of wine, but hey - gotta love bathtime). 

Simply delicious.  Like warm apple pie.

Did I mention that I lost my bracelet? For over a year I have been wearing a beautiful bracelet with a heart that is engraved with the words "Keep Fighting." This bracelet was given to me by my closest friend Caryn and it was pure magic. It would always catch my eye during my most difficult days and remind me that I have to be strong. There was another time where I thought I lost it and it appeared in the most unusual place just as I was having doubts over some important decisions we were making. Magic.  This time, it wasn't until we were settled into the PICU for another sleepless night that I noticed the bracelet was gone. I didn't mention it to anyone, but I was very aware of the sign it was sending. I just didn't want to believe it.  I don't expect to find it this time, but you never know. 

I believe so much in signs like this, so I wasn't even surprised when I arrived home to a package with a new bracelet inside just for me.  This time, a beautiful rosary bracelet from a great friend I have yet to meet but who I feel I've known forever.  What a fitting and comforting replacement. 

I want to tell you about our visit with Hospice today, but I will wait until tomorrow.  Today it wasn't the nurse who visited, it was the case manager.  I didn't realize this until she explained the process to me.  When I saw her face, I immediately recognized her from 2010.  She was warm and knowledgeable but I probably won't ever see her again.  I will be meeting his nurse tomorrow and I hope she is the right person to accompany us through all of this.  Before leaving, the case manager did examine Ty.  She said that his lungs are beginning to fill up with fluid, which was a shock to me because as of Monday his lungs were clear.  She assured me, though, that I shouldn't worry too much about it.  His vitals are very strong and he looks really good. 

I am so tired.  I should just go upstairs and lay down with Ty and Lou.  I hope that Lou and I get some sleep tonight.  Ever since this started with Ty's breathing, we pretty much lay in bed with him, eyes wide open, listening to him breathing all night long.  How can we possibly sleep when we are so afraid of him choking.  It's such a horrible feeling.  Lou has been up there with him for a couple of hours already and when I went in to give Ty his medicine Lou whispered to me, "What are we going to do?"  Knowing he was referring to losing Ty, I answered:

"We are going to keep living even though we're half dead."