I don’t think I have ever known how to just ‘be’ as a mom. I’m grasping to find the words here, but what I want to describe, is the feeling, the state of mind, I live in when it comes to parenting.

I can barely remember a time when I wasn’t in parent mode and I can honestly say that I remember feeling it even in my role as big sister, then as a paid caregiver for people with disabilities and then with my own children. From the moment I assumed responsibility for someone else’s life and wellbeing, I feel like I have shouldered a weight. A weight that comes with feelings of anxiety, love, fear, stress, guilt, anticipation, pride and sometimes terror.

My therapist tells me it’s the feeling of responsibility that I wear like a cloak that I don’t know how to shake off and I know he’s probably right. But I don’t know how to be rid of it and honestly.. who am I if I’m not wearing it?

I can shift my focus somewhat and make it my intention to take care of myself – something I have been working on for the last year – but that doesn’t change the feeling. When I was working full-time, that feeling was always there and was compounded by the responsibility of caring for others professionally. It’s been years and years since I’ve had a real vacation and people always say “what you need is a trip..” but I know in my gut that the feeling will still be there, even if I’m lying on a beach with a drink and a book in hand.

I realize that I’m not unique, that every type of ‘parent’ can relate. We are changed when we hold the responsibility of someone’s life in our hands – be it a life you brought into the world, a pet, or one you are paid to take care of. But where I worry that I’m different from others, is that I don’t know how or when to ease up. I know that there is a letting go to some degree that usually happens as the life that has been entrusted to you grows up and starts to feel out their own independence. But it’s not in the obvious – that because I have two children with developmental disabilities who require 100% caregiving – that I don’t have the opportunity to back off as my kids transition to adulthood. It’s the fact that I don’t know how to relax in my role. I don’t know how to smell the roses. Be lazy or complacent. I don’t know how to just “be” mom to Jake, Owen and Will.

There has always been a goal, we have always been in the midst of the “we’re working on…” phase. Twenty years in and I’m still researching, still planning, still dreaming, still strategizing. It’s go-go-go mode all the time. My body is shutting me down, but it feels like my brain is still spinning.. imagine Looney Tunes’ Road Runner, who appears suspended in the air while his legs spin so fast beneath him but he’s not going anywhere. I can practise mindful meditation, work on breathing and try to master yoga, but I’m not sure I can slow things down.

I try! I really do!

But I’m coming into the realization that after more than fifteen years of somewhat rejecting – or maybe more accurately, it’s that I didn’t take advantage of – the idea of proper, regularly scheduled respite from my caregiving duties, I need it now.

The problem is, that I’ve got a couple of voices in my head and without calling them out, I’ll just say that those voices aren’t my own, and they’ve told me that I’m lazy, or not deserving or in need of the break. That I have ‘lots of help’ and shouldn’t need time away from the boys. And my brain knows better than to care about what others have said or think, but there is a nagging, niggle of doubt or guilt, that usually stops me from moving forward in formulating a plan to make respite happen in our lives. Because.. I’m a mom. It’s my job. It’s what I signed up for. Right?

For anyone unfamiliar with the term ‘respite’, you’ll hear it used frequently in the world of caregiving. Sometimes there is funding provided by governments or charities for caregivers to pay someone else to care for their loved one, so that they can take a break. Over the years, I have had many opportunities to use respite funding for my own self-care, but out of necessity because I have three children to care for, that funding was used for paying a caregiver to allow for carrying out regular family scheduling events such as medical appointments, grocery shopping, errand-running or the big one – after school care so that I could work. Yes, two hours without kids is appreciated, but it’s not really respite when those hours are filled with cramming your to-do list into it. So while I’ve been grateful to have opportunities to get things done, it’s a bit of a joke when the word respite is used to describe the time.

My boys aren’t slowing down and I think as long as they continue to strive for ‘more’, then I have to stay in that mindset as well. I’m not sure that it was a conscious thought, but ever since I accepted that Owen and Will would likely never be independent without constant care, I think I had believed that the boys would mellow with age after puberty. Somewhere in my history of working in group homes, I think I made an assumption about the adults that I worked with. I assumed that their ‘calm’ was a natural progression as they aged. But if I look back and critically evaluate the whole picture, I now realize that nearly 100% of the residents were medicated and likely sedated somewhat into that pharmaceutically influenced calm. I’m not saying that’s the way things are done now in group homes, but I do think it’s safe to say that as long as the boys live with me, I’m following their lead.

So if the boys are stepping into adulthood with the same, but different, drive and dreams that their neuro-typical peers may have, I think it’s still my responsibility to propel them in that forward direction.

If I’m leading you down a rabbit hole here, I’m sorry. This is therapy for me and I thank you for being along for the ride.

What prompted me to write on this topic is that we are nearing the end of our third week at home, with the boys not in school. The choice was mine – my guys are very fortunate to have the choice to be in school right now as they have made an exception to the stay-at-home order for some students with more severe developmental disabilities who would be unable to do virtual learning – but I have opted for them to stay at home because of the (admittedly low) risk of them bringing home COVID. With my current health being unreliable, the GTA’s high active cases and the very scary presence of the new variants, I’m choosing to re-evaluate from week to week whether or not to send them back. So in three weeks if you ask me to describe how we are doing and what we have been up to? My answers are – crap and nothing.

Which brings me to the feeling that I’ve been living in for the last three weeks. I feel guilt. I have spent three weeks accomplishing nothing. We haven’t worked on any programs or goals. We have been spending a whole lot of time in pyjamas and sweats. We have barely been outdoors, especially with all the rainy weather we have been having. In my defence, I haven’t been feeling so great, with fatigue, nausea and dizziness preventing me from wanting to do anything. But I wake up every morning, feeling woozy and feeling like a failure at the same time.

I need to learn how to live in my parenting role, with the peace of believing that if I am not in go-go-go mode, it doesn’t mean that I’m failing my kids. It just means that I need the rest. I need the respite. I’ve earned the respite. Owen and Will might want more out of their life right now, but I don’t think I’m hurting them by resting. We all want more out of life right now in this pandemic and though I hurt for them and it pains me that they don’t at least have the understanding that we do for why life isn’t ‘normal’ right now, I don’t need to carry that guilt.

So it seems that just as my guys leap into their adulthood and while I have blown off these three weeks, I have also been going through my own transition. My so-called failure has helped me to see that it’s responsible to look ahead with a plan that includes respite for the boys and I from each other somehow. For their benefit as well as mine. My parenting game-plan is changing. Responsibility is not a cloak I can whip off. It’s doubtful that I can change who I am and who I am is responsible.