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"...
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.
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.
Can we talk about literally living at the hospital for a second.
Whether it’s one day or one thousand days. I almost feel like the shorter the stay the more likely the parent(s) / caregivers are to stay bedside, like literally bedside.
We were there for the better part of a year, and I did not leave Adam’s side.
I can count the amount of times I left the hospital on one hand. Once was for my childhood best friend’s wedding. Once was to meet Gordon Ramsay. Another time was to see Jim Cuddy from Blue Rodeo, once again to see Shania Twain, and my best friend dragged me out to go shopping (where I dragged back a mini Weber bbq toy for Adam - that was a fun walk back lol!)
Every time we did leave, someone else came to stay with Adam - my mom or my mother-in-law. They came to “babysit” so to speak. The nurses always used to laugh and say to me, you know you can leave him right - we’re right here, it’s essentially free babysitting. But no, we wouldn’t leave Adam if we were at home, so we didn’t want to leave him there.
As the weeks, and months went by, we became friends with some of Adam’s core nurses and they convinced me to go for lunch or go shopping with my best friend a bit more often (I hate wandering downtown anyways, so it was a big deal to get me out on a walk downtown on a good day!). We became comfortable leaving Adam with them, without a Grandma around the 5-6 month mark.
In fact, when I met Gordon Ramsay the nurses had to literally convince me to go. I’m SO glad that they did! I think that was one of the only times I ever left Adam without any family members and only the nurses.
Did/ do you stay bedside throughout your child’s stay?
Here are my reasons why I HAD to stay:
What if something happened and I wasn’t there?
This was never the case, thank God…. but still, you never know, and anxiety and catastrophic thinking is a huge bitch, especially when you live in a hospital and are exposed to codes every day.
What if Adam’s Surgeon came by for rounds, or a Fellow?
I NEEDED to be there for every single visit with Adam’s surgeon or the Surgical Fellows. I had to know what was going on 100% of the time.
Two words: Replogle Change
What if he choked, or stopped breathing… I had to be there. But also, it got to the point where I’d be telling the nurses Adam’s replogle needed to go down further - but an NP, Surgical Fellow, or Surgeon needed to do it. Adam’s replogle advanced so much, it became a joke with his Surgeon and I where he literally just told the nursing staff “Listen to Mum, if she says it has to go down, put it down!” - um, AMAZING! Obviously it was checked by an NP first, but we kind of got to bypass the “ask the Surgeon first” step!
…are amazing. I was ALWAYS there, so they were always disappointed they never got to spend time with the adorableness that was my chonky smiley boy. But I walked in from getting a coffee one time to a volunteer holding him - my heart broke. Like why does a STRANGER have to comfort my baby?!?! Was I not there when he cried?! Did he need me and someone I didn’t know have to step in?! The guilt was real.
Now the Volunteers are amazing for this reason! Especially with babies, if the family can’t be around for whatever reason, or they have another child or children at home that need them. They are so so amazing. I was just there ALL the time and it threw me off.
Tests. Scans. Procedures.
I needed to know what was happening 100% of the time. The nursing staff were directed to call me over night if something had to be done (it never did, Adam slept through all his diaper changes lol!)
However, in the NICU they do tests, scans, procedures whenever a Doctor or Specialist or Technician is available - 24/7. We couldn’t be there for those overnight, and it bothered me SO much. I barely slept. Especially since those first weeks in the NICU were to find out all of the details of Adam’s EA and the associated anomalies (which thank the Lord, every single test came back normal!)
As for the ICU - I stayed there LITERALLY ALL THE TIME. The only time I left was when Matt was in there and my Mom wanted to come in. We didn’t let anyone else in, except for Matt’s mom as well. Only two people were allowed at a time, so often it was me and someone else, and just me overnight.
Overnight at the ICU was terrible. They tell you that you can’t stay overnight. I told them to F* off. In fact, the convo was “you know technically you’re not supposed to stay here overnight” and my response was “technically I do not give a F*” ….she stopped bugging me after that - they knew I wasn’t going anywhere. I would have literally needed to be dragged out, it wasn't worth their struggle - I sat in the corner by Adam quietly *most of the time (but that's a different story altogether).
I slept on a chair. I had just bought a Canada Goose winter coat and joked that I had a nice duvet to cover me. It was Hell. The things that happen in that ICU in the day, seem to be worse at night. I witnessed things that no one, let alone a mother should ever be exposed to.
But I HAD to be there, especially then - when something, for the first time, actually could happen.
If you couldn't tell by me saying it 10x, I wasn't going anywhere. Theme of the blog. My personal choice, if you're comfortable with it then all the power to ya!
There are few things, when you do leave the room, that you should absolutely do.
Some of those tips include:
Long-term or short-term - How do you feel about staying bedside?
Have you? Would you? What would be your reasoning for each choice?
Drop a comment below, or on our Instagram post to carry on the discussion.
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