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I’m waiting for this sky to fall, I’m waiting for a sign

I can do hard things. I can do hard things. I can do hard things. I can do hard things. I can’t do this.

I’ve said it before and I will say it again. I hate Wednesdays. Last week was an incredibly difficult week. Miss Alyssa always reminds dancers to remind themselves “I can do hard things”. As I drove Riley to school this morning we both were telling ourselves and each other that. I’m not sure if it was a tough week for a particular reason beyond the fact that I love you and miss you.

It was Riley’s birthday on Friday, we are two weeks from your birthday. and my friends baby who was born exactly two weeks before you celebrated her second birthday. Since we know the whole family her face popped up a lot this weekend. So it maybe started tough for no particular reason but I was already sensitive as the week continued to remind me why we hurt.

So many things trigger the pain too. Hearing about your cousins starting school next year reminds me you won’t ever. I want to feel happy for them and excited. Normally I would. But now there’s a part of my brain that screams “shut up shut up.” Taking Riley to school and seeing kindergarten kids reminds me that won’t be you. I try to think positively about the fact that you got to go to daycare a little bit. It actually brings some sadness though. Because by the time you were able to start daycare your decline had obviously begun. They never got to know your happy playful personality. You were always tired. You were only there for half days two days a week because you wouldn’t eat lunch there. We couldn’t afford for you to not eat lunch while we were trying to get your weight up. We thought you were tired because you’ve never been a morning person. You always came home though looking more tired and with rosy cheeks and a slightly elevated temperature that would go away by the time we got home. The room was warm. Knowing now your brain was starting to struggle with temperature regulation and energy it all makes sense. You did explore a little bit while you were there but you stayed nice and close to the teachers.

Your first day of daycare on your own
Always finding the instruments
Cuddles on your last day less than a week before.

It’s silly things too. Mommy doesn’t like sweet drinks and can’t have ones sweetened with Stevia. So I’ve been drinking a water that has electrolytes in it because the doctor said I needed it to help with my blood pressure that was low. That makes me angry because we spent 4 days in the hospital after you were born because my blood pressure was high. It was four days we can’t get back Charlie. The water comes in boxes so I had the boxes stacked in the kitchen by the shelf. We often had the Kool-Aid Jammer boxes there. You would go over and pull them all out. Then you started figuring out the straw and ripping the straw off so we had to move them. I miss that. Getting my water the other day upset me. I can’t wear some dresses I bought when you were born. They remind me of the trauma from your delivery and they remind me that after all that you were still taken away. They quite literally make me feel sick when I see them. Daddy found one in the clean laundry the other day and suggested I wear it for Riley’s birthday and I couldn’t. At that moment I wanted to tear them up. I bought them for nursing. They weren’t nursing dresses per se but they were helpful. I remember now our difficulties with nursing because you took little bits at a time and I always said it seemed like it was just too much work for you. It probably was.

I had a hard time on Riley’s birthday trying to be happy all day for her. It felt very forced and fake. Even though I was happy for seeing Riley grow over the last 9 years. There was a mass that morning for you too. Riley and Daddy came but I couldn’t. I hurt too much. Your uncles planned a birthday party for Riley at a park. Fortunately where we found space was not near a lot of people but when I had to walk to the jungle gym/splash pad areas or along the pathways all the toddlers we saw just broke my heart. There were fireworks in the park that night so there were lots of families coming with their kids in tow in wagons. It made me think of how excited Riley was when we got a wagon for the two of you and how she loved riding home from school with you in it.

You were involved still in her birthday. Friday, her actual birthday, we met for the first time with a grief counsellor. and as I mentioned there was a mass for you. Sunday we celebrated with her friends at a kids spa. When you were still here in the hospital Riley said she wanted you as the special guest at her party. The staff made a “head table” for two with a spot for Riley and a spot for you. With your name and we brought your photo. They do glitter tattoos for the kids and so Riley found a few kiss mark ones like like when someone wears lipstick and leaves a mark on your cheek. So she got the smallest one and had it put on her cheek because she was sure you were giving her a big kiss for her birthday.

I keep getting confused. I look around wondering who is watching you. I think to grab the diaper bag before I leave. I hear a noise I check to make sure you aren’t getting into something. Not that you ever really did. The two biggest things were you liked to open the drawer on my side table and pull out all the things. Riley came up with a little hack with some elastics at some point to make sure you couldn’t get your fingers pinched. At the same time you never bothered to close it the appeal was opening it and taking everything out. You also seemed interested in the outlet by your kiddy table. The one that belonged to my Godmother Auntie Matsy. We had the outlet covers on it but you still made us nervous. No other outlet was of interest though. All these moments of forgetting you aren’t here confuses me. I thought it was denial again. My brain refusing to believe you aren’t here. I checked in with my therapist and she said it was more so that we were getting into regular life things so it was the automatic response taking over. It’s weird how I genuinely feel confused about where you are at the same time that I know where you are. It’s like two sides of my brain conflicting. I guess that’s what it is really. The logical and the emotional. and it hurts so f***ing much. Don’t repeat that word.

I have no tolerance for peoples drama and bologna anymore (that was actually a bad word in my head Charlie but not for you). My son is gone. Someone doesn’t like how I parent too bad. I knew and know what you and your sister have needed. Someone doesn’t like that one of us is a little sensitive over something too bad. Someone wants to fight..bring it. I don’t care. I’ve bit my tongue many times.

We have an appointment in two weeks with the genetic counsellor and the doctor who figured he had the answer. The test results are all back. The lady that booked though couldn’t tell us what they were.

I’m tired buddy. It just makes no sense that you were here and now you’re not.

I’ve been getting pretty hooked on Our Lady Peace lately. Taking me back to high school days. You know…the ones that made the song Thief. I sung it to you when we learned what happened to your brain. ” I can’t see that thief that lives inside of your head, but I can be some courage at the side of your bed.” I still become a hysterical mess when I sing it or listen to it. I have also been singing “Somewhere out there” a lot too. I keep looking for some proof you are still there. Somewhere…

“Somewhere out There” – Our Lady Peace

Last time I talked to you
You were lonely and out of place
You were looking down on me
Lost out in space

We laid underneath the stars
Strung out and feeling brave
I watched the red orange glow
I watched you float away

Down here in the atmosphere
Garbage and city lights
You've gone to save your tired soul
You've gone to save their lives

I turned on the radio
To find you on satellite
I'm waiting for this sky to fall
I'm waiting for a sign

All we are
Is all so far

You're falling back to me
You're a star that I can see, yeah
I know you're out there
Somewhere out there
You're falling out of reach
Defying gravity, yeah
I know you're out there
Somewhere out there

Hope you remember me
When you're home sick and need a change
I miss your purple hair
I miss the way you taste

I know you'll come back someday
On a bed of nails, I'll wait
I'm praying that you don't burn out
Or fade away

All we are
Is all so far

You're falling back to me
You're a star that I can see, yeah
I know you're out there
Somewhere out there

You're falling out of reach
Defying gravity, yeah
I know you're out there
Somewhere out there

You're falling back to me
You're a star that I can see, yeah
I know you're out there
Somewhere out there

You're falling out of reach
Defying gravity, yeah
I know you're out there
Somewhere out there

You're falling back to me
You're a star that I can see, yeah
I know you're out there
Somewhere out there

You're falling out of reach
Defying gravity, yeah
I know you're out there
Somewhere out there

I know
I know
You're falling out of reach
I know

Comments

7 responses to “I’m waiting for this sky to fall, I’m waiting for a sign”

  1. LM Avatar
    LM

    ♥️♥️♥️♥️

  2. Sherri Ramirez Avatar
    Sherri Ramirez

    My hearts hurts for you and your family. As I have shared with you before Dani. I have no wise words, no fancy phrases that can ease your pain. All I do, is journey with you and continue to encourage you to write!! Write about whatever you want! Your little boy Charlie was a beautiful little boy that filled your life and many others with so much joy. Writing does make it real. Thank you for sharing. 🤗💙🙏

    1. Dani Avatar

      Thank you Sherri,

      I hope as time goes my posts will be more about the happy stories. So many people had not yet had a chance to meet him (COVID did play a role in that). So the only way now people will get to know him is through us. Thank you for coming her etc read it and learn about our little man. You don’t have to have the words but just letting me know you are here and getting to know him makes me feel a little better

  3. Mari McIntyre Avatar
    Mari McIntyre

    Love your writing dani.

    1. Dani Avatar

      Thank you Mari for coming here to read it and comment!

  4. Rudy Hadbai Avatar
    Rudy Hadbai

    I really loved this part Dani

    “ I have no tolerance for peoples drama and bologna anymore (that was actually a bad word in my head Charlie but not for you). My son is gone. Someone doesn’t like how I parent too bad. I knew and know what you and your sister have needed. Someone doesn’t like that one of us is a little sensitive over something too bad. Someone wants to fight..bring it. I don’t care. I’ve bit my tongue many times.“

    I think it’s so hard for people to understand that life is so much shorter than we could ever anticipate. When we are hit with such a traumatic experience , especially losing a child it almost feels like nothing else matters in this world. All the small shit that we used to think we’re big , or the stupid conversations that people bring up, the dumb petty drama none of that matters anymore. You start to realize who is truly there for you especially during your grieving stage .. and let me tell you grief never stops. It will eventually fade in a sense where you begin to cope , but the grief is always there. People may get sick of it but it’s only because they don’t understand it , or perhaps it’s too much for them to listen to. Don’t let those people ever ever ever make you feel like you can’t continue to talk about it. I unfortunately was thst person where I had to keep things to myself because it was such a bother to people and sadly … it put me into a deeper spiral because I was grieving on my own which is not healthy. I still grieve over my brother , I still get angry I still get confused but I will tell you that those days aren’t as prominent as the years go on. What is always on my mind is the beautiful soul that I will always remmeber , the memories I have with him. The dark days will eventually become less , but don’t ever stop talking about those dark days because it’s important to be able to express your emotions in whichever way is best for you.

    I hope you find peace soon, but don’t rush it either. I learned that the hard way. Take your time in feeling ..

    Much love Dani

    1. Dani Avatar

      Thanks Rudy. That’s one thing I’m reading a lot in different books and blogs. How eventually everyone else can move on but we won’t be done yet. Ivars started to find dad groups on Facebook where he could talk to other dads who have lost children and I’m following other moms on instagram. I tried a group on FB too but I got more upset by it I don’t think I can quite take in that much suffering right now. We also found a place in Oakville we will join in the fall where the primary focus is for kids but it’s a group place where kids who lost a family member can connect. One night is for kids who lost siblings and the parents of those kids get to hang out together. So we are trying to also learn how we can support our grief beyond our circle as large as it is.

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