Caregiver vs. Parent

I read an interesting quote the other day from another grieving momma about the role of parenting versus caregiving. "We assume that parent/caregiver is interchangeable. One of the same. It is not."

On forms sent home from school, letters addressed to "parent/caregiver" and in everyday conversation, often those two words are used to mean the same thing. This quote hit me hard this week. It's been a tiring few months of trips back and forth to the city. Six to be exact. Since January we've been to SickKids six times for appointments, surgeries, procedures, cancelled surgeries, follow ups and a new diagnosis.

Caregiving is just different than regular parenting. It's long nights of repeated wake ups when his stricture is so severe he coughs and gags on his own spit, comforting him in my arms as we wait for surgeons to organize schedules to get into the OR. It's cumulative sleep deprivation from sleeping on pull out chairs in a hospital room after hours of driving to the city. It's a constant state of stress and worry each time they put him under, intubate or extubate him. It's never knowing what day it is, yet always remembering what appointments are coming up and getting there on time. It's crying on the floor when he's begging for oral foods, but the risk of choking is all to real so he can't have any. It's nursing visits, occupational therapy, IV lines, oxygen monitoring, Gtube feeds, medications, advocacy and phone calls. It's making decisions on things no parent should ever have to decide, and then second guessing yourself at each turn. It's exhausting, it's rewarding and it's so very worth it to see him thrive through it all.

It doesn't leave a lot of time to just be a parent. While parenting children with complex medical needs is my normal, in fact the only normal that I know, it is not in fact THE normal. Instead of arranging playdates and going to early on groups we are isolating at home actively avoiding these places. With two surgeries behind us already this year, and two more on the docket, we can't afford to get sick. It's just too risky. Instead, I scour the internet for great deals on toys for the house that will advance his motor skills and development. Things that we might otherwise find at playgroup. Travel back and forth to Bracebridge to refill medications (the closest compounding pharmacy to us) has become our fun outing out of the house.

It's not always hustle and bustle. We have had many more days of sunshine than the cold grey winter days lately. Rémi loves playing outside and not only is he walking, but running to the places and things he loves. With warmer weather, we can be outside a little longer each day and often take trips down to the park where he LOVES going down the slide. Our trips to Toronto involve a visit to our friends Patches and Mango- the two bunnies the hotel has in the children's play area. Followed up by a swim in the pool to shake out our sillies from the long drive. Saying that he loves the water is an understatement. We have to pull him out before the blue lips and shivering set in- and even then he still wants to stay and splash. I can't wait until the lakes are open and warm enough to have beach days this summer! One more thing to look forward to.

Even a simple beach day showcases the differences between parenting and caregiving.

There are so many more complexities that a caregiver must take into account. Packing the medical equipment, making sure there is sterile water to clean his Gtube after a dip in the lake. Do we have cell phone reception in case of emergency? How far away is the nearest hospital and what's the route to get there? Is everything charged for the trip and if it's an overnight trip do we have electricity to recharge batteries, heat up food, keep medicine cool?

I long for the ability to just be Rémi's parent. His mom. My role as parent and caregiver are so intertwined that it's hard to know when they are two separate entities. There are no date nights out with my hubby, coffee dates with friends, or afternoons alone. One of us must always be attending to Rémi. Parents can hire a babysitter, caregivers need to hire a qualified respite worker. Someone trained not only in caring for a baby, but also with medical training to care for his other needs. Daycare is currently on the backburner as we still have not found a provider willing to take him on. That's a bridge to be crossed at a later date. There's still a few months of my maternity leave left to fight that battle. Caregivers fight a lot of battles, big and small. Things just take extra time, extra effort, extra explanations. All of the extra "me" that there is to give, and sometimes more.

People often ask how we are doing, and the truth is that things really are good. Rémi is thriving at home, our hospital admissions are minimal (trips are often just day visits or outpatient), he is meeting his milestones, he's happy and busy and loads of fun. But somedays and some weeks are rough. They are lonely, full of surprises (not always the good kind), frustrating, and always always exhausting.

People often say that we are strong, or brave or can't imagine going through it at all. Some people might think because I keep going I don't struggle. But the truth is it is hard, I do struggle, BUT I keep going. And honestly, you would too. It's in the quiet moments that I like to remind myself that to my kiddo's I am just mom. Sylvie's mom and Rémi's mom. They wouldn't know me by any other title, and it's by far the best name I've ever had.