A Mother's Grief

We grieve the past. It took a long time to get you here but not as long to lose you. It took a couple of years after Riley was born for Mommy to feel ready. Then when I was we weren’t really having any luck. Then we thought we did but we miscarried. Then we had you. Now we don’t. There was 7 years between you two. We grieve the loss of your words, and your energy and some of your joy. You loved to make sounds and try to talk but then you lost words and really your sounds started to decline towards the end. Your squeals that we thought were just a new way of communicating what you needed really now looked to be because you were losing the ability to make the sounds you used to. We had been hopeful as many were that this was just the result of what we will call for the sake of comparison “normal” delays. People could share all the stories of their kids who couldn’t talk but understood everything and one day wouldn’t stop talking, or walking and running etc etc. Some it just sorted itself out, many of our friends with autistic children were pulling the list of similarities. But now we see you never were going to get those skills back. Whatever it was in your mind that you loved to share with us we were never going to find out. So now we are left always wondering what would you say if you could. We miss your laugh. We miss your joy seeing Riley and her joy with you.  We mourn the present. We mourn the fact that you should be here talking to us. The empty spot in your bed. I keep your Chimchar stuffy with your blanket wrapped around it next to me. We mourn your empty chair at the table. When the vacuum starts I cry not hearing your little scream. You had a love hate relationship with that thing. Whenever I hear the doorbell, or  the Amazon notification ding or Alexa tell me “someone is at the door” I expect your excited squeal. One day I cried over diaper rash cream and I don’t even know why. We grieve over your toys that are now sitting here not being played. That we didn’t get to get your Birthday Bear from build a bear. So Riley used hers this year to make one for you. It’s super cute wearing a Mandolorian onsie that matches your Grogu chair.  We even mourn the custom made pants because like the rest of us you seemed to grow taller before you grew wider so finding pants was difficult. We were able to give those to Isabella. We mourn that you were supposed to be coming to Sauble Beach with us this summer which reminds me of us going last summer. We’d go to the beach and spend most the day there. You’d nap during the day laying on top of me under the tent but I think that much fresh air was good for you because you’d be super energetic the rest of the day you were so happy during that week. You loved the sun. So now when the sun comes out I cry you aren't here to enjoy it.I cry when I see siblings in wagons on family walks. We just bought a wagon last summer and you and Riley loved it. Riley most definitely did not need a wagon ride all the way home from the old school because it was a short distance but she loved sitting in it with you. We mourn the fact that we should be planning your second birthday right now which is a month from now. And that as your sister approaches her 9th birthday in two weeks she had wanted you to be a “special guest” at her birthday party. We grieve so much about the future. Ornella was supposed to do your first hair cut. Instead it was done in the hospital with a pair of craft scissors so we had a little something to keep.  There’s so much in the future from thinking about a trip to Disney World, to your first day of school. We were adamant that we would make sure you could go to Sts. Peter and Paul with Riley. She cried the other night because she said it was her job to protect you. She was determined to protect you in the future from any bullies at school. She knows all too well how cruel kids can be and she wanted to spare you that pain. I had to tell her that now you would never have to experience anything like that. She cries because she wanted to be your babysitter when you guys were bigger. We mourn any career you might have had, any hobbies you would have had, any relationships. We mourn that some of your cousins won’t remember/know you. We mourn the fact that Riley won’t have a sibling to grow old with her and be there with her when we get old. Mommy’s body doesn’t do too well with pregnancy. Neither of you came without complications and trauma. Because I am now at “advanced maternal age” any pregnancy would be considered “geriatric” now and high risk. It was suggested that I may consider having my tubes removed during your c-section. We spent a long time talking about it and felt it was the right thing. I even spoke with someone from the church for a faith perspective. He told me that the church teaching is to nurture life and that if by having future pregnancies my mental health and physical health were at risk I wouldn’t be able to appropriately nurture the two lives (you and Riley) that we had brought to the world and he thought it was a very reasonable choice as well. So that’s what we did when you were born. We are still waiting for the genetic testing on your blood to be completed and there are two types of Leigh’s Syndrome but so far based on what’s come back they’ve determined it’s not that you have acquired defective mitochondrial DNA from me. Because we haven’t gotten the official word yet I can’t properly explain but it’s most likely that Daddy and I are both carriers of a rare gene mutation that affects a protein in the mitochondria. It requires both parents to have it in order to impact a child. So by fluke both daddy and I have this. If one of us didn’t you would have been fine. It’s possible to have an unaffected child (Riley) or she could also be a carrier meaning that in the future if she met someone with the same gene she could have affected children. It also means that even if we did have another child it could happen again. I can’t even think about the idea of another child right now anyways. You can’t be replaced and the world doesn’t feel right without you in it and it never will. The more I start to look ahead the harder it gets. Just recently I was looking at some homes for sale. We aren’t buying anytime soon I just like to look and see what the market is like for the kind of home I’d like. I saw a gorgeous home for what I thought was a reasonable price then noticed it was a two bedroom. My first thought was “oh that won’t work” followed by “oh wait.. I guess it could” and tears. Work got a new benefit plan so we had a staff meeting and the guy came to talk about it. He started talking about life insurance and dependents and that you could get it for your children. He started saying “God forbid something happens to someone in your family like your spouse or..” and I just lost it. I had to turn off my camera and step away. It was completely innocent. This man would never expect that while on this call there was a mom who lost her two year old only 3 weeks ago. Because that shit just doesn’t happen often. I can’t stop saying how much I hate this. How it makes no sense. How nothing is right. It never can be again. 

See, Mommy is still finding Twenty One Pilots lyrics. It was so accurate on Wednesday. Daddy went back to the office for the first time since we took you to the hospital. Wednesdays were always Mommy and Charlie days since Riley was at school and Daddy was at work. For a stretch we would go to the studio for a music class after we’d drop Riley off to school. It was right over your nap time though so you only ever half participated. You would be most interested when you had a chance to use an instrument. You weren’t really all that interested in the singing. When we weren’t in music class we were snuggling for your morning nap. So this Wednesday was sooooo hard. For starters the last Wednesday Daddy went to work was the day we took you to the hospital so the harsh reminders and vivid memories of the beginning of the end hurt so painfully for all of us. Then there was the quiet after Riley went into school. “Sometimes quiet is violent”  it hit before I even left the school parking lot. I walked Riley to the door instead of the kiss and ride. Then I got back in the car and looked into the mirror and saw your empty seat and broke down into tears. I finally got it together to drive home. When I got home though I just sat there in the car and cried. Then I got out but I couldn’t get into the house. I found myself bracing on the car. When I finally got in I fell to the floor screaming. Screaming for you. Like if I called you loud enough and painfully enough you would just reappear. Then I started screaming at God. Begging for an answer to the question why? I ate breakfast and watched TV. Miss Kelly said I could come to her house but I had such a bad migraine (the crying didn’t help it) so I couldn’t drive down there and I just went to bed. I hate everything so much these days. The quiet was awful. Thoughts began to swirl around in my brain. Tyler Joseph says:  “I hate this car that I'm driving, there's no hiding for me I'm forced to deal with what I feel There is no distraction to mask what is real”  These words screamed to me. Your sister and I got drums. Nothing too expensive. I learned that Long and McQuades sells used ones and I needed something to hit and to make noise and you loved doing that with your drums or pots and pans so we headed down there last Saturday to check things out. I’ve followed along with some online lessons and so I played along to Car Radio by Twenty One Pilots on Wednesday.  I can’t play the actual drum line that Josh plays because it’s way too complicated still for my new skill level but I kept a satisfying rhythm. I need to call around for lessons. I think I might see if I can do that on my Wednesdays.  We went to the studio for Riley’s musical theatre class that day too. It was hard so I hung out in the store with Miss Amanda away from the crowd. Did you know they are grieving you too? Why does that feel strangely comforting? I mean our family is grieving but so many of our friends are too. It makes it feel less lonely. They’ve been playing a little game hiding little treasures around for the kids to find to try to cheer everyone up. Tiny babies, rocking horses and duckies. Riley loved it and wanted to find more babies. Miss Amanda has been working on a special project idea to keep your memory alive. Something to remember your “untapped potential” as Daddy described it. We like it. But it hasn’t been shared yet so I won’t say anything more here about it. But it meant a lot.  Maybe the answer to why will come. I keep thinking back to Father Dave saying that 2 weeks before Easter you entered into your own passion like the Passion of Christ and leaving us on Easter Monday. It wasn’t fair that Christ had to suffer for us and it won’t be fair that you had to suffer for whatever purpose but there has to be a purpose right? Faith is a weird thing right now. There’s anger, there’s doubt there’s, begging and pleading and praying and thanking. I don’t know. I hate all of this.  ----------------------- Car Radio - Twenty One Pilots (your sister has always liked this song too but for the drums I think) I ponder of something great My lungs will fill and then deflate They fill with fire, exhale desire, I know it’s dire my time today.                *Why do I think of you in the hospital?* I have these thoughts so often  I ought to replace that slot with what I once bought ‘cause somebody stole my car radio and now I just sit in silence. Sometimes quiet is violent I find it hard to hide my pride is no longer inside It’s on my sleeve, my skin will scream reminding me of who I killed inside my dream I hate this car that I’m driving there’s no hiding for me I’m forced to deal with what I feel, There is not distraction to mask what is real  I could pull the steering wheel. I have these thoughts so often I ought to replace that slot with what I once bought ‘cause somebody stole my car radio and now I just sit in silence. I ponder of something terrifying, ‘cause this time there’s no sound to hide behind, I find over the course of our human existence  one thing consists of consistence, and it’s that we’re all battling fear, Oh dear, I don’t know if we know why we’re here oh my, too deep, please stop thinking I liked it better when my car had sound There are things we can do but from the things that work there are only two and from the two that we choose to do Peace will win and fear will loose There’s faith and then there’s sleep We need to pick one please because faith is to be awake  and to be awake is for us to think and for us to think is to be alive and I will try with every rhyme to come across like I am dying to let you know you need to try to think I have these thoughts so often I ought to replace that slot with what I once bought Cause somebody stole my car radio and now I just sit in silence. (super cool emotional sounding bridge/breakdown here) And now I just sit in silence And now I just sit in silence And now I just sit And now I just sit in silence And now I just sit in silence And now I just sit in silence And now I just sit........ I ponder of something great My lungs will fill and then deflate They fill with fire, exhale desire I know it's dire, my time today I have these thoughts so often, I ought To replace that slot with what I once bought 'Cause somebody stole my car radio And now I just sit in silence

She asked me son when I grow old  Will you buy me a house of gold? And when your father turns to stone will you take care of me? I will make you queen of everything you see  I’ll put you on the map, I’ll cure you of disease. and since we know that dreams are dead and life turns plans up on their head  I will plan to be a bum, so I just might become someone She asked me son when I grow old will you buy me a house of a gold?  And when your father turns to stone  will you take care of me.... I will make you, Queen of everything you see... I’ll put you on the map....  I’ll cure you of disease

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.  

If you’ve been following our journey on Facebook or GoFund Me that’s probably what directed you here. People have asked me to keep writing but it didn’t seem appropriate to keep using the updates page on GoFund Me and Facebook just didn’t seem like the right platform forever so I have looped back to an old blog page. This blog had lots of purposes. It first was used to document the journey of Ivars and I through our engagement.  Then it was used to document the first year of Riley’s life. All happy things. Now it’s being used for grief. I hid the old posts and I'm using this now to share my thoughts when I’m in pain. Things make no sense. Life makes no sense anymore. I have all this free time and I don't like it. It isn't supposed to be free time. This is supposed to be my time with you. I'm not even crying anymore. I just feel exhausted and so very confused. I can't understand how it's been 3 weeks since I took you into the hospital. I can’t understand why you never came home. I think I’m back in that denial phase. I forgot I had an appointment today about my sleep. I told the person that none of the sleep stuff seemed relevant anymore and why so we cancelled our appointment. She sent off a note to our doctor. The doctor called back. The hospital hadn't sent any information so she had no idea you spent two weeks there and that you were gone. The next thing I knew I was giving a short recap of what happened but my head was vividly remembering it all. What ifs began taking hold. I remember getting there and trying to find parking and noticing in my mirror you looked like you were losing consciousness and terror hitting me. There's a few dings on the car that we noticed since being there and it may have been from me trying to squeeze in a tight spot by a pole in the garage. I didn't think I hit anything but who knows. I would have done everything to save you. I remember you not freaking out when we got on the elevator. You hate elevators. I remember telling the triage nurse that. I remember him asking if the colour of your skin looked normal and I said no he looks green. I remember him calmly checking your vitals then telling me he wanted to go to another room with a more accurate machine. As we walked into that room I noticed the door said resuscitation room. He hooked you up to another machine and before I knew it the room was full of people. Some were residents. They were asking questions and giving you Ventolin and trying to get you to tolerate the oxygen mask. That was the first time you fought anything that day. I remember seeing Daddy find us... I remember staring at him with fear. I remember that the last time I saw you conscious you were terrified. I tried to reassure you. I tried to let you know we were there and this was going to help you. I don’t imagine you could understand that though not just because of age but also because of the oxygen level at that point. I hate to think you were wondering why we weren’t stopping these strangers. I hope that your last memory of us was not that. I feel like I want to keep writing but I just don’t even know anymore. Everything feels wrong. Riley noticed it too. We tried going to the movies yesterday and indigos and she fell apart in both places. Saying those exact words at Indigos. Nothing is right everything feels wrong. I don’t want to have time to write. Having this time hurts. You and I should be snuggled up having a nap right now. I’m exhausted so I’ll probably have one but it won’t be a good one. It hasn’t been since you’ve been gone. Today just feels like a day of repeatedly saying “this makes no sense.” Littered with curse words though. Saying “I don’t get it”. Saying “It’s not real” Just what the fuck.