Let's talk about feelings today. The ones that no one ever talks about. I'll start by telling you about how one of our favourite nurses used to force me to sit outside on her lunch hour. She'd often sit with me, or make me promise that I'd be there by the time she came back. (One time I wasn't, because a bird pooped on my arm lol! And everyone on the unit knew I was back early and gave me crap about it - no pun intended lol!) But I used to sit outside, on the NW corner of SickKids, close to the entrance in case I had to run back in… forcing myself to get some air, because everyone was saying that I had to. I'd watch the birds, squirrels, and people walk by. I hated watching people walk by. I hated seeing mom's with their strollers and their healthy babies, oblivious to what was going on just steps away inside SickKids. I hated seeing UppaBaby strollers that looked like mine on the sidewalk - where mine should be, but isn't. I was so damn mad at the people who could just get up and walk around, who could feel the air and the sunshine. Who could literally just pick up their baby or child and buckle them into a carseat and take them anywhere, at any moment, with nothing to worry about. Why do these people get to walk around with their healthy child and I don't?! They have NO idea what is going on behind those walls. Look at her with her Starbucks, her purse, her shopping bag. Going home to sit on her couch, cook dinner, play with her baby. Sleep in her own damn bed. How is any of this fair?! I used to HATE sitting outside. I felt robbed. I felt robbed of every experience, even something as simple as feeling the summer air on our faces. Adam doesn't get to, he's stuck in an obs room tethered to the wall with monitors and suctions. We were robbed of so damn much. Spring. Seeing the flowers bloom. Summer. Going to cottages, playing in the sand, boat rides. Events. Concerts, weddings, celebrations. Holidays. Our first Mother's Day and Father's Day were spent in a hospital room. We didn't celebrate our first Thanksgiving. But it was the simple things. The walks. The car rides. The fresh air. The wind. The sun. The birds and the squirrels. We were so robbed. And going back into SickKids was just as bad. Because after feeling all of those hurtful, angry, sad, depressing, frustrated feelings… I'd walk back in and then feel guilt. Guilt because I will get to go home. I'll be the one who is picking up my son and strapping him into a carseat at any given moment. Taking the stroller out and breathing the fresh air. The guilt was consuming. Because all of the anger I just felt, was like a slap in the face once I walked through those doors and saw parents with children who were sicker than Adam. Who may not ever make it out of those walls. Who are bound to a wheelchair. AND HERE I AM AGAIN THINKING, "Kayla you get to experience it, you're home now, stop complaining"... Comparative suffering. It's a bitch. Don't do it. It gets us nowhere. We are ALL entitled to our feelings. Our pain and suffering is SO VALID. No matter what. There will always be someone who has it worse than us. But in the kindest way possible - that's not our story to worry about. We need to focus on our own. We need to acknowledge our own pain and our own suffering and validate our own feelings. No one can tell you how to feel. No matter what those feelings are - they are real, they are valid. They are yours. Own them. I literally just had this conversation with my therapist, and it was one that really hit hard. You don't need to compare your suffering. Your feelings are real, and they matter. Even those feelings of hate, jealously, pain, suffering, guilt. They're valid, even if we don't want to agree with them. Brene Brown has a podcast episode dedicated to comparative suffering.
https://brenebrown.com/podcast/brene-on-comparative-suffering-the-50-50-myth-and-settling-the-ball/ Even just googling it, there are a ton of resources, opinions, and experiences. It helps knowing that we are not alone in our thoughts and our feelings, even if we are validating them for ourselves, it's always nice to know there are other people who 'get it' and that we are not alone.
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*trigger warning - very sensitive topic for me, so there is profanity in this post. Just keepin' it real. Whether it's bad timing (for real, it's ALL bad timing) or whether you're there for a long-term stay like we were... there's no worse place to be to celebrate anything remotely fun or joyous... however, SickKids for one is really amazing at keeping every single holiday spirit alive. I feel like they have a list of random holidays and even celebrate those ones too, like National Book Day or something. As for the bigger holidays and events, no one ever wants to be there for that. We missed a ton of holidays when we lived there for ¾ of a year. Starting with Easter, Mother's Day, Father's Day, Canada Day, both long weekends, Thanksgiving (which was the hardest for us), & finally Halloween. Thankfully, we were home just in time for Christmas. The Ronald McDonald House does the most amazing things for parents during these special days. Both Mother's Day and Father's Day we were greeted with a bag of goodies that were donated by different families and companies. It was a great pick-me-up! Very much appreciated! As for spending so many days at the hospital… I'll be real with you, it fucking sucked. We missed out on Summer BBQs, cottage nights, bonfire drinks and laughs… Thanksgiving hurt the most because it's the beginning of the holiday season - all the big cozy family get together ones. We stayed with Adam while our families got together and had the most delicious meals and laughs, with cousins joking and football games on tv (ROLL TIDE!). We opted out from celebrating Thanksgiving at all - my parents offered to cook and bring it to us, but we wanted nothing to do with it. Out of sight out of mind. We made it just another day. It sucked so bad. As for Halloween…. Hah. Spooky, terrifying, haunting… all a gross understatement. October 30 was the last day we were in the CCU. After a miraculous conversation and fiiiiinally an extubation, Adam was given the go ahead to go back upstairs and back "home" to 5B. When we arrived that night, I finally felt that I could relax. That for the first time in what felt like forever, we were in the clear, we were safe… we were on our way to going home!!!!!!!! We had our nurses back, familiar faces, the happiest of greetings seeing Adam had a successful surgery and missing his sweet face for a few weeks… It wasn't all rainbows and butterflies though. Every single person tried to convince me to go back to RMH (I literally LIVED bed side in the CUU) ...I know, gross - didn't leave to eat or shower… I know, I know… but when you're watching your healthy baby now hooked up to a machine breathing for him, I literally could not leave his side. So I stayed the night in 5B. I'll keep an already long story somewhat short, but that night around 1 or 2am ...after NUMEROUS times of me BEGGING our not-so-favourite nurse to change Adam's NG tube tapes….she didn't. Adam pulled it out. Keep in mind throughout his entire CCU stay they literally had signs over his bed, our 5B Fellows would come in daily to make sure NO ONE TOUCHED OR MOVED THE NG. It was acting like a stent so that his repaired esophagus could HEAL properly. If it was moved or touched it could tear his anastomosis (Lord, there's a trigger word) ...it means it could tear his repair, the surgery would be pretty much useless if it unattached because of the removal or movement of the NG, as it was left in place for his esophagus to heal around it. Adam's surgeon wanted it in as long as possible to make sure everything was perfectly healed, it was to be removed a few days before we went home, so like a month - NOT 15 days. So I closed my eyes for literally 5 seconds (honest to God, the first time I "relaxed" in WEEKS, finally feeling safe back on 5B…. to open them to Adam laughing with something in his hand. Groggy and confused af, I think to myself "umm he pulled out his replogle…. Omg he doesn't have a replogle anymore… his NG!!!! THATS HIS F&*$# NG OMG!!!!!" Guys, I screamed so damn loud… I lost my shit. Total understatement. I absolutely just lost it all. I'm talking like screaming, crying, panic attack, full blown ugly cry, shaking, not breathing… panic beyond panic. A friggin CCU nurse was dedicated to making sure Adam's head and this damn NG tube DID NOT MOVE A MILLIMETER…. and now it's in his hand. He pulled the whole thing out up through his esophagus and out of his nose. Jesus take the wheel! I thought I was going to pass out. I told the nurse numerous times she NEEDED to redo his tapes because it was waaaayy too loose and not secure. She said she'd do it. I swear I asked her a hundred times. I feel asleep for 30 seconds, she went on break, ignored my request AND THIS HAPPENED. Y'all I lost it. When I came back to, after nearly passing out… the panic was so dang strong still, but the RAGE. Thank goodness one of our fave nurses ever was there to calm me down. She assured me that it happens all the time. She sat with me and really just helped me not get escorted out for kicking the shit out of the other nurse that night. I told you, lots of swears. I'm sorry but this night and what happened literally haunts my nightmares. Thinking that everything we just went through, the literal HELL that was the CCU, and now because someone screwed up something so simple - it all could have been for nothing, and the worst part was, he'd need another surgery, another intubation, more sedation.... it was honestly the worst case scenario now that we were past the surgery and clear of infection. Anyway, Matt was at RMH because he went back to sleep… SOMEHOW before all of this NG drama happened, when he left an hour earlier he knew I was in a terrible place and he called my parents who graciously got up and drove an hour+ after midnight to be with me… by the time I caught my breath, I called my mama and BLESSSSSS them - they were in the SickKids parking lot. So after it all happened my parents were there 30 seconds later, not even knowing the shit that just went down. Talk about good timing eh. SO HALLOWEEN. (btw, not many people know that story, and it was therapeutic af to write all of that out and get it into the open. Cause Lord, it has been weighing on my soul keeping some of these experiences in. Even though I can now laugh at it… these memories haunt me, daily. Here's to hoping releasing them causes some peace). Halloween… in the morning (after I spoke to Adam's surgeon who assured me everything was fine, thank Godddd!!!) ….we dressed Adam up as a lil sushi. My parents and brother took us for all you can east sushi before Adam's surgery and we probably ate thousands of dollars worth of food lol, so for some reason I decided to dress my kid as a sushi for halloween. Don't ask - I don't know why lmao. But I literally hand sewed on felt in the shape of salmon and added a lil wasabi, and Adam was having none of it. The first day of this kid's life tube free, he was wearing a hand sewed sushi costume for Halloween. Not a super hero. Not a doctor. A sushi. Lol. We're not even Japanese ...we just really like eating sushi. He was super cute though!!! This pic is actually really hard for us to look at. Most of the time, actually ALL of our time on 5B Adam ONLY had a foot monitor (standard for every patient) attached to him. So to see him with those ...I don't even know what to call them, ports? needles? dangly poke things.... and even worse is seeing him STILL so drugged up on hard narcotics (he was being weened off of morphine and things I can't even begin to guess how to spell) ....I see it in his eyes, he wasn't fully back to himself yet. It breaks my heart. It really is so hard for me to share these images). But yeah, what I'm saying, is that you can make the best of being there. The nurses dress up, the atrium has activities, Child Life comes by with treats and gifts - they really do make every single event or holiday memorable (hah! was it ever!!!) ... whether you decide to participate or not. …..hey, do you think there's a Bravery Bead for that? |
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