During the Super Bowl this year, SickKids Foundation released a commercial with a girl named Kaitlyn.
She is 24 years old and was diagnosed with a rare disorder called VACTERL Syndrome.
So this hits close. Real close. VACTERL is part of what Adam was born with. You can see the E stands for Esophageal. By the grace of God he had no other anomalies, and wasn't considered VACTERL. It's not usually like that though. Usually babies are born with more than one. It's extremely rare to just have the isolated esophageal atresia (gap). Seeing this young girl, so healthy, at her age, accomplishing so much, absolutely shakes me to my core. It's amazing. It just really hits me how... Lucky - it's not luck though, how blessed we really are.
The flashbacks, the fear, of being pregnant and not knowing the extent of Adam's condition. Every week going for ultrasounds, juggling life, work, so much anxiety. Every minute in the NICU having extensive tests done around the clock to rule every possiblity out. Dealing with genetics when they are surprised it's "only the EA" and are up our ass for more tests to figure out why, because it's so rare to have such an isolated outcome. Being told that even though this rare it's amazing but we're going to have to stay for a year.
Not knowing how this will affect our baby later on in life. Will he swallow? Will he eat? Will he be able to sit at the lunch table by himself with his friends? Go to play on time? Eat breakfast and go to hockey practice?
Seeing this beautiful girl, grown up, becoming a nurse, with so many VACTERL issues, what she's accomplishing, when Adam only HAD the one....
The absolute guilt I feel. How can I even compare. How do I have the right to talk about this when my son is the way that he is now? Perfectly normal, like it didn't even happen. When he's not suffering from any of the other VACRL anomalies or associations. When he is the small percentage that is ok from all of this.
Why am I advocating and raising awareness when he's fine. When it doesn't affect us anymore. It's done, move on, be grateful. There are still families that are suffering every day, with what Adam didn't have.
I see it as how, why, how come he didn't have any of that when everyone else does? Matt quickly reminds me to ask instead, 'how come he was born with anything at all?!'
This is what I suffer with.
This is why I do whatever I can to help other people. Because I am in a position to do so.
It's not a bragging right. It's not a debt owed. It's not holding onto the 'one moment my child was sick' as someone so nicely put once. Though my baby didn't have any associated issues, we lived at the hospital every day and every night for eight months. My pregnancy was traumatic and absolutely ruined from the moment I found out during the anatomy scan.
Living in fear every single day, no diagnosis, no understanding of the extent of my baby's condition. Not knowing when he was born how long we were going to be there for. All. Day. Every. Day. He didn't see the sun for months. He didn't feel the breeze. He was attached to a wall, through suction, so he wouldn't die. He was intubated, unable to move, on hard narcotics when he was less than a year old. Poison in his system to keep him alive. Crying with no sound, no tears. Complications with his lungs they deflated for the surgery. Fed through the tube through his stomach. Meds. Throwing up the smallest of pieces of mushed food.
Sitting with a teacher at day care, who made sure his food was cut up small enough, who made sure he had a drink after every bite.
Not knowing if I CAN have another baby because I know that I CAN'T go through more ultrasound appointments. I can't re-live that fear, anxiety, trauma that even the thought of paralyzes my body.
But somehow feeling guilty because of where we are now. Regardless of the pain of what we've been through. Others have it worse, so I'm not entitled to feel my pain.
This is what I struggle with.
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.
To navigate our blog, you can scroll through the posts, or if you're looking for something specific - you can click on a category below & it will take you to related posts! • k&j