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.
Last week we talked about comparisons. About what your child is eating, and when.
This week, we're discussing comparing again, because it is a huge deal.
I'm not talking about comparative suffering - I'm talking about simple mom-to-mom talk and discussions.
We see it everywhere, on mom groups, in playdates, even just simple text message conversations.
Most of the time it's harmless, unintentional curiosity. But almost always it is damaging.
A little back story - Adam got the common cold around 5 months old. We were pros at tummy time at this point. We put a gym mat on the hospital floor, and a clean sheet over top, so that Adam could continue to develop and play as best as the situation allowed him to, but in a hospital setting, tethered to the wall by a suction tube.
We made it work. We brought in books, toys, a cute Finding Nemo activity centre with lights and sounds.
However, when Adam got sick, we pulled him off of the hospital floor and said absolutely not. Because even something as regular as a common cold is a huuuuuge deal when you're in a hospital and everything is monitored microscopically.
Adam no longer did tummy time.
We got his surgery date soon after, and kept him in a bubble. He stayed in his isolation/ private room, no visitors, nurses had to gown up, absolutely no leaving his crib to play on the floor… we had him quarantined so nothing would get in the way of his surgery.
Obviously after surgery he didn't have tummy time. We weren't putting him back on the hospital floor.
Plus he had a new button Gtube we didn't want to put pressure on.
When we went home, we tried tummy time ...Adam was now 8+ months old, this is vital development time!!!! However, we couldn't do it because the pressure on his stomach would cause reflux and we didn't want that.
So ….we were recommended an in-home occupational therapist. This was a huge pill for me to swallow. As a teacher I assure my student's parents that therapy is a good thing and it will only help!
...But I couldn't take my own advice. I couldn't admit that Adam was behind at something, and needed help. We did though, and I am glad that we did. Because it pushed me to keep pushing him, more than I would have. Instead of just staying "oh he'll catch up" we both worked so that he did, and he did so very quickly and very well.
The point is…
Adam barely crawled. He was stuck on his back from month 5-8 for the reasons above. He missed out on vital developmental practices. While most kids are doing tummy time, we're keeping him in one spot so he's at his healthiest for lifesaving surgery.
People don't know that.
So when they ask me "hows tummy time?" Or "when did Adam start crawling"
He didn't. We worked for weeks with an OT to get him crawling and redevelop those muscles and skills.
Adam finally started to crawl near the end of our time with the OT. He skipped the army crawl stage, and went straight to standing up and cruising.
Within a week, he was walking.
Not your typical journey.
Sounds great right?! Nope. Apparently those muscles they work while crawling are important for development to aid in their walking and standing…. Yeah whatever. I was happy my kid was walking.
The thing is - now Adam runs, jumps, swings, rolls, spins - everything. Just. Fine. Perfectly. Normal.
It is irrelevant to anyone else when, why, and how.
No one is going to ask your child on the playground "hey when did you start to crawl" or "how old were you when you began to walk"
It's irrelevant. Do not stress about it! If there is something delaying your child significantly, your paediatrician will notice and tell you. It's not up to mom groups to inadvertently shame you into thinking your child is less or is achieving less than theirs.
We need to focus on what our children CAN do and not what they are not doing.
The same thing goes with eating.
Everyone asks about the start date for purees, baby led weaning, whole foods, milk, a sippy cup…
Curiosity gets the best of us, but it's also comparison and shaming whether we realise it or not.
Mom's put pressure on each other and it's damaging!
Each baby will reach these milestones in their own time.
Just because Karen over there is feeding her kid bananas with the peel on as part of her BLW practice, doesn't mean that Susan is in the wrong for cutting her kid's banana into smaller pieces.
The fact of the matter is, both kids are eating. So Karen needs to keep her opinion and her self righteous feeding regime to herself.
If you're feeling pressure or stress about any of these things, please reach out to us. We promise you that we will be nothing but motivating and supportive. We've guided a lot of friends through these stages - comparison is the last thing you need to stress about. We've got you.
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