What now?

Time doesn’t make sense. The days are long and draining and yet I’m doing nothing. 
It used to be filled with you. It took you forever to eat your meals (although I guess it’s because it was hard for you to do the work when your brain couldn’t get the messages through).  The house is quiet. You aren’t banging on your pots and pans in the play kitchen or throwing crayons off your table. Containers of play doh just sit there now. Not that you cared as much for the play doh as it was taking the lids on and off the containers.

I went out with Miss Kelly, and Miss Amanda and Miss Cat yesterday then saw my friend Michelle. I cried to all of them.  Then I came home and felt lost again. There was still so much of the day left. I felt exhausted and sore all over my body. I took a nap. Napping isn’t right anymore either because I napped with you. If my hair was still in a pony, you’d reach your little hand under my neck and pull my hair towards you. So I made sure to put my hair down yesterday.

I can’t even keep track of what day of the week it is. Nothing is comforting. I can’t figure out what to watch on TV. I could do some work but I can’t think up anything creative and it seems like too much mental effort. Reading is hard I’m too easily distracted by the silence. Since when does that make sense? I can’t even find a Twenty One Pilots song that helps. In some ways I guess that’s an okay thing because I would never wish this pain on anyone and to write something that would explain this you’d have to experience it. Which means I have to be the one to write it. And let me tell you Charlie, Mommy is not the writer Tyler Joseph is.

I wish I could be. Music has often been a comfort to me. Now I’m pulling songs from Frozen because I don’t know where else to look. 

You received a lot of Easter gifts – some stuffies and blankets and chocolates. Losing you on Easter Monday meant you never got to use them. You were like Mommy and were addicted to chocolate. We have so much chocolate now because you had to start every meal with a small piece. Weirdly enough though Mommy has lost interest in chocolate. I’ve had some but it doesn’t taste the same anymore. 

I try to talk to you like you are here. I’d love to hear your voice though. You are supposed to be whole in Heaven now so in theory you may even be able to talk. You certainly understood what was being said to you. You did have some words at one point. If in Heaven those lesions are gone from your brain are you chatting up your grandmother? What does it sound like when you talk?

I wish we knew Charlie. I wish we knew what you were going through so we could reduce the suffering a little bit. Everyone says it may be better that we didn’t. You experienced a lot – A Blue Jays game, Wonderland, Santa’s Village, Sauble Beach, Daycare – things we probably would have been too afraid to take you to if we knew. But I don’t forget your tired eyes and your sighs. I know now why and I wish I could have helped you through those moments.

At least we think we know why. We are still awaiting the genetic testing to confirm it was Leigh’s. I don’t know how I’d feel if they came back still not sure of what it was.

Today I’ve tried to do stuff. Daddy got me a new grief journal. Plus I had one I got another day. I tried to look at Disney Cruises. A little getaway. We had hoped to take you to Disney so I thought a cruise might be a nice alternative. I sent out more GoFundMe Thank you’s and but I couldn’t finish anything I set out to do. Somehow after trying all those things it was still only 2 something. That’s when we’d normally be napping. Riley then called home. She almost made it through the whole day. I don’t blame her I can’t get myself to do anything so why should I expect her to?

Daddy described this as feeling almost like you’ve lost a limb. Mainly because you always were clinging to Daddy’s shoulder so he quite literally felt like he lost a limb. But I went on to agree because I was thinking something similar. When you lose a limb (modern technology aside) it doesn’t grow back. You can stitch up the area and it will heal up but the actual limb is gone forever. How you move forward in life is completely different. You have to learn to adapt without it. And most of your limbs are pretty important in your daily life. You don’t NEED them to be alive but they are important to your functioning.When they are gone you still can feel pains from where they were. You can still feel your brain try to use them and function as you did. 

So we are still here. Trying to continue without an important piece of our family. Moving forward and learning to adapt but trying to accept that you won’t be coming back. We still feel the pain of losing you. We still anticipate seeing you in the hallway when we open the bathroom door, or pulling yourself up to stand by the couch when we are watching TV. I still think I hear your voice when you wake up from a nap then remember you aren’t there. 

I just don’t know what to do now.