We will keep him in our bedroom

I just received this adorable photo of Ty in an email from a friend.  He was at a barbecue the summer of his diagnosis and she had a bunch of photos that I've never seen.  This was the nicest surprise.  He is the best boy in the world, and he's still the kid that everyone wants to kiss :) 

Lou and I keep having these conversations about our plans for Ty after he dies.  So many details that no one in our shoes should ever have to think about because no kid should die from cancer.  These conversations are necessary and horrific and very, very surreal.  From the beginning we decided we would cremate his beautiful body instead of embalming, but good God, either option is utterly unthinkable - isn't it?  I created that body.  All of him is part of me.  We know that we need to have Ty with us, always. We will keep him in our bedroom because we've never slept apart from him since the day he was born.  The thought of his body going through more torment absolutely haunts me... it suffocates me... I sometimes wake up in the night imagining I am burning alive.  Planning for the loss of your child is nothing short of pure hell.  I still don't believe this is happening. 

When Lou asked if there is something I want to leave with him, I blurted out "I want to cut off my hand so he never has to feel me let go, that's what I want to leave with him!!"  Look at my baby's hands.  Yesterday they formed a heart.  I need to have those fingers intertwined with mine for always.

My birthday was as nice as could be under these circumstances.  In fact, I indulged in a little too much wine over an amazing dinner, which is why I didn't get to post an update :)  I smiled a lot yesterday!  Lou made it very, very special for me by surprising me with all of my favorite things.  Of course, my greatest gifts were smiles from Ty, a little bit of soft laughter coming from the couch when I sang some super silly songs, and watching Ty and Gavin hug and kiss goodnight. 

My Gavin. He is so adorable and happy through all of this. Last night after we went to bed he said, "I'm going to miss Ty."  I was taken back, as you can imagine.  "You're going to miss Ty?"  I asked.  Maybe he was actually listening those few times I tried to explain that Ty may have to leave us... Then he said, "Yeah, when he goes hospital."  I wonder where that came from.  How much of this he is really picking up on.

There is one recent memory I have that makes me sad for all he's experienced, too.  I came home from the hospital just 10 minutes after he fell asleep and I was upset because I hadn't seen him for days.  I only slept for a few hours because I wanted to be back at the hospital by 6AM to be with Lou and Ty before he went off to surgery. While I was brushing my hair at 4:30AM, I heard Gavin's little footsteps and he was calling out for me. He tried to pull me back to bed for snuggling but I explained that I had to go back to the hospital to see Ty and Daddy. Poor Gavin. He was so upset. Instead of showering (the sole reason for coming home), I just sat and rocked him and hugged him for 1/2 hour before rushing off. As he gets older, he realizes our absence more and understands less. Just look at how much he's grown in these two years. A photo of Gavin just after diagnosis, followed by a photo from last week. No more bottle. Big boy underpants. School! He is growing up so fast :)

 

 

 

 

Before signing off for the night, I want to thank you for all of the comments and stories I have received about making the most out of your time with your children.  Especially the photos of your kids jumping in muddy puddles!!  I am starting a collection.  That is the best birthday present in the world.   Here is an abridged version of one of my favorite notes.  This is what it's all about. 

 

Today we lived for Super Ty!!

Today was a rare treat in Tx, it rained!! It rained so much we actually had muddy puddles . So of course we had to jump in them. At first Hailey thought I was crazy and kept telling me no because she didn't want to get dirty. I felt like the worst mommy ever, I focus to much on her being clean and looking perfect!! Not anymore thanks to you! After she saw me having fun and getting dirty she decided to do it and we spent so much time splashing in the puddles and making muddy feet pictures!! Thank you for making me see what's important and for giving me a beautiful memory to cherish!!

After the fun in the mud we enjoyed a nice warm bubble bath together lots of fun and smiles!! Again I thank you for that, it has been so long since we enjoyed bath time. We rush through life everyday but because of you we will be stopping to enjoy the simple things.

Then Hailey decided we needed to curl up in bed and play play doh and we needed to make candy for Ty. Hopefully we remembered all his favorites, we have candy canes and lolli pops, gum drops, skittles, chocolate kisses an candy corn. Hailey made the candy canes into a heart. We also made a big pink heart but as we were rolling it out a rainbow started to appear. Don't know how that happened but it was extra special!!