Charlie’s “Untapped Potential”

Hey little man
Were you at recital on Sunday? I didn’t have any screamingly obvious signs but that day I knew you were. Mommy hasn’t danced in a recital since I was like 4. I was getting a little nervous because ever since you’ve been gone I’ve been having knee pain. There were 4 shows on Sunday. I was there from 9-9. I performed in show 3. In bellydance which despite being called bellydance does require a lot of leg work. I was worried my knee was going to give out. I also felt a bit disappointed after the Saturday rehearsal that I still didn’t have the routine memorized. I missed 4 weeks of it for understandable reasons. I went to bed Saturday night and said Charlie I think Mommy is going to need some Charlie level strength tomorrow. and I did. and I remembered the routine! That was my sign.

Riley did great too! She was very in character for her Musical Theatre routine. She also took on the spider role in her acro routine making a creepy face and getting in character there too. Mommy’s favourite dancers are really good at involving their facial expressions too so I loved it. She stumbled a little trying to do a cartwheel and joked about it being awkward but honestly for the most part she had very much an “it is what it is” type attitude. Which is totally fair. She missed a few weeks too for the same reason. So we could spend every last minute with you.

Daddy wasn’t looking forward to the day. Mommy was gone for 12 hours and Riley would be backstage with friends for 7 hours leaving him on his own. It was also a reminder of sitting through last years shows with you in his lap. I hadn’t said anything about it but some of the staff had acknowledged it was probably going to be a tough day for Daddy and they said if he wanted to volunteer he could but he didn’t really want to deal with people. That said he knew I needed him to help with photos during the first part of the third show because I’d be backstage getting ready. When I finally came back to take over he seemed in his element and wasn’t really in a hurry to turn over the camera. He took a break and got Riley some food but came back and continued to take pics. He came upstairs for dinner and we chilled outside for a bit when it got too people-y in the room. The fourth show we actually needed someone at one of the doors taking tickets so he did it. No one challenged him and he seemed in good spirits and then got right back into photo taking.

The fourth show hit me a little though. A couple comp routines had already performed once that day plus we have lots of photos from other performances of them. So I took the time to sit and actually just watch it without a lens. Some of them though hit a little hard and feelings started creeping up. Then Miss Amanda announced what she’s been working on. Charlie’s “Untapped Potential” scholarship. It covers the next year of tuition for a dancer who shows potential or interest like you did in hopes of giving them a dance future you couldn’t have.
I knew it was coming. I even wrote it (she modified it a teensy bit). But tears came. and even Miss Amanda couldn’t read it. I told her I’d do it but Miss Kelly ran out and Miss Amanda got through it while I stood with Miss Cat and Miss Alyssa and Mr. Chris and they held me while I cried but I stood there right in the wings and watched her announce the winner. I wasn’t going to miss it. It caught Daddy of guard though he was in the audience taking pictures for us and he was on his own. Riley was in the crowd on stage but she’s a tough cookie and has those kid defence mechanisms that keep her from getting overwhelmed by the grief.

Then we played a little (long) video for Miss Amanda. It had some random clips and pictures of things over the years at the studio but also featured your face and a thank you message to the studio family from our family for being with us. I didn’t take into consideration that the video would be on a big screen and the impact seeing your face so large and clearly would have on me.

When it was over we were all beat. Normally I’d stay for the clean up but I had to bail. I didn’t have it in me anymore. We grabbed our cameras and equipment and headed out.

We had a tree planted in your name at the cemetery. It’s right across from the row you are in. It’s a red oak. We will get to watch it grow over the years when you should be. It was supposed to arrive today so it was in by your birthday but it was in last week so I was able to feature it in the video to tell everyone thank you because the donations helped to get that.

It’s been a very emotional week. I’ve been in the bargaining phase I’ve been in denial. Everything. I started running through my head if we had done something differently to keep you here what would it have been. From the sounds of it I think our family doctor might be doing that too. When I talked to her about it she told me she’s reviewed everything, done tons of research and talked to multiple neurologists. She said there was really nothing more. She said we did the absolute best for you. That we paid attention to your needs and took everything so seriously that we were able to keep you at home longer. That we were able to manage your symptoms so well without the medical intervention that would have happened if we knew you had it that we probably bought you more time. And kept you happy and comfortable longer. She said if we knew that you would have been on tubes and stuff much earlier and she doesn’t actually think looking back on things that would have been a good thing for you. She said the neurologist felt that way too. She said they had patients whose families wished they didn’t know because when the time came they realized they had kept their child away from so much in an effort to protect them from the inevitable that the child lived a very sheltered life.
She told me getting you to the hospital hours earlier or days earlier wouldn’t have changed it. She said based on the tests she’s seen so far every cell of your body was impacted and you were very sick. She said if it hadn’t been your lungs it would have been something else. Despite being as sick as you were you were so incredibly strong that you never gave us a sign that things were as bad as they were. I’ve found myself saying “I wish it was autism” something I’m sure many parents of autistic kids never thought would be something someone would say. There were just so many other things it could have been and so many of our friends with autistic kids saw so many parallels between you and their kids that I was sure that’s what it would have been.

It’s been so hard this week. I’ve been sick with a throat infection so before I got on antibiotics and after a 12 hour day of recital I was pretty beat. I tried napping but napping was hard because I was reminded thats what I did with you. I just can’t understand how you were here and now you are not and I seem to be crying every day again. And I’m haunted by the memory of taking you in and how you presented that morning. And I’m haunted by the memory of leaving you behind at the hospital when you passed. All of us walking sadly out with all of our things and no you. Then Riley noticing a box in my hand and asking if it was you. It was a handprint they made before you left. When we told her that she asked why we couldn’t take you with us and what the hospital was going to do with your body. She seemed upset but we told her they were going to take care of getting you all cleaned up to go to the funeral home where they would make sure you are dressed nicely and look as much like healthy you as they could. In your final days your eyes were swollen and you had a blood clot in your arm. Daddy was surprised he thought you looked a lot like yourself (or at least you the final weeks) compared to what he’s seen in the past (because he’s seen this too much). I saw things I didn’t want to see in you though. I saw the scratch on your cheek where your skin was getting irritated from the bandages holding your feeding tube to your face. I saw the bruising on your eyes from the swelling. I held your hand but it still looked puffy. I remember seeing the colour change in your arms as you left your body. I remember what I thought at the time was you stretching and for a brief moment I had hope but it wasn’t that…

We’ve been getting ready for your birthday. Your sister had her second birthday with some daycare friends. Or was it her third? I’m not sure but we are making sure you get the birthday party you would have had. We invited family and family friends like we would if you were here. It’s Bluey themed. We are having a bbq but all the other food we will have out are things you would have eaten. We will have all the McDonalds Chicken nuggies, and corn twists and bear paws. My friend Miss Shelly from the studio is making you a chocolate chip birthday cake because you always ate anything chocolate chip.

I was on a mission to get you your favourite breakfast – the Bauducco chocolate chip panettone. But it’s seasonal. I reached out in the Ancaster mom group because that group can answer anything. So many moms offered ideas of places to go and I reached out to all of them with no luck. I reached out to Bauducco’s sales email but no one ever answered. I would have bought tons of it. I had been on this hunt since the week after your funeral. I had given up. Sunday night though I got two messages. One from a mom who told me she had found a mini three pack in the states and bought it. It had the classic flavour the chocolate chip and the vanilla. I cried I was so happy. Then another mom messaged me. She managed to get through to Bauducco’s customer service and they told her they’d ship us the samples they have in time for your birthday. I was so happy I cried harder. Between the two moms I figured it was enough for us to be able to celebrate that morning with a mini one for each of us. I picked up the one set from the mom and as I took it from her I started to cry. She reached out and gave me a hug and then I cried harder and she held me so tight. A complete stranger. Then the package from Bauducco they had two mini chocolate chip ones and one large one and a whole bunch of cookies and a nice note. Charlie, two complete strangers helped to make sure we had your favourite thing at your birthday. You loved it so much we bought up as much as we could before they sold out. It last us until February. You ate it for breakfast every morning but some days you also ate it for lunch and a snack and with your dinner. If you “asked” for it we gave it to you. You asked by pointing and squealing and you would reach for it and pull on the bag.

So now we are going to take the large one and the mini ones and we are going to use it to sing Happy Birthday to you on Sunday at the cemetery and share it with the family and we will have the cake and cupcakes at home with the guests for your party.

Getting together everything though for your party is hard. We are being strategic with what we choose. Loot bags contain versions of things you liked. Another way of helping people get to know you. It’s also a little hard because it kinda makes it a bit more expensive since some of these things aren’t available in bulk or aren’t cheap. But we just really want to do it this way.

I love you so much baby. I don’t get why you aren’t here with us. I can’t accept it. And the physical weight on my heart seems so permanent I can’t understand how my heart is still functioning. It makes the future seem scary. A friend of Poppa’s lost his child to a rare disease as well. Almost at the same age. He said it’s been 25 years. I can’t see how my body can survive 25 years. We were discussing how G.G. and Great Papa got married at the same ages Daddy and I did. (I already forget how many years they’ve been together but it was I think like 68). That got me thinking how do we go on for 50 years, 60 years without you. This weight. This pain I don’t see how my body can take it. I know people say the physical portion of this will ease and get better. but I joined a mom group for moms who lost children and honestly a lot of them don’t sound like they are doing any better.