Life really tested everyone the past two years. We have seen so many lives pivot 180 degrees, and we saw sides of people (and ourselves) we never knew existed. Good ones. We experienced many challenges, but we have also seen flexibility, agility, growth, strength, and resilience like we have never before.
I will share my story as an example. My child was diagnosed with lissencephaly after his birth and started his medical care during the lockdown. It is a rare disease that means he has a completely smooth brain that functions differently. In other words, despite all the amazing medical care and therapies he continues to receive, he will remain medically complex, disabled, non-verbal, medically blind, fully dependent on others, and will never lead anything remotely close to a normal life. Adding to that, he is my only son and the first grandson in the family.
At some point, my world felt like crashing down until I came to terms with the fact that “a diagnosis is not a definer.”
We always hear stories of others, and we say, “That will never be us," until we suddenly become "us." Let’s face it. No one selects “caregiving” as a major in college or pursues that track as a career. Most caregivers don’t choose to become one. We do it because we don’t have a choice. This was especially true now that reality hit so close to home.
No one selects “caregiving” as a major in college or pursues that track as a career. Most caregivers don’t choose to become one. We do it because we don’t have a choice.
Three years into my caregiving journey, I can now tell you a million incredible qualities about my kid than just his diagnosis. Like how he doesn’t lie, and his default is happiness. How he perseveres in every step. He may be nonverbal, but he understands us. His disability is not inability.
I don’t have access to my kid’s mind, but I know he understands a lot more than he lets on. He takes it all in, and just expresses himself in his very own unique way. And arguably his most important quality is his inability to judge. Because of his condition he doesn’t see differences in skin color, religion, or gender. He willingly offers the same kind of acceptance that most people spend their entire lives searching for.
Now, same as any other skill like leadership, some of us are natural caregivers. They seem to be born with extra quantities of patience. However, for many of us, it is one of the hardest jobs we will ever have; one that is certainly not well-compensated or even taken seriously in some corners of the world, including the Middle East.
Women are the ones who mostly face this difficult reality. But the hard-earned lessons of caregiving — the tasks that make caring for someone you love worthwhile — are transferable to every relationship and situation (personal and professional).
But the hard-earned lessons of caregiving — the tasks that make caring for someone you love worthwhile — are transferable to every relationship and situation (personal and professional).
Knowing and understanding things can be hurtful, maybe that’s why most of us aren’t that thrilled about it, but it also makes you a better, more mature person. Instead of 2022 goals, I am here documenting the lessons I learned in 2021 as a working caregiver and in-house lawyer.
Lesson 1: Practice patience
I think we sometimes underestimate the challenges that come with caregiving. Hence, we are not prepared for the difficulties we face. And we sometimes lose patience. I am not saying that if we prepare, we will never be frustrated or impatient. But when we acknowledge that caregiving brings both joys and frustrations, we can prepare ourselves for the difficult times.
To care for another person is one of the most selfless and profound acts of love there is. The millions of caregivers deserve boundless respect and recognition. Caring for a loved one often requires an enormous commitment of time and energy — not to mention lots of patience, compassion, and empathy.
As a caregiver, it’s only natural to want to give as much of your time and attention as possible to your loved one. But it’s also natural — and incredibly important — to have limits and boundaries. Even the most flexible and loving caregiver in the world will face moments where they lose their patience, if only for a moment or two. They also have other important tasks to manage.
As a caregiver, it’s only natural to want to give as much of your time and attention as possible to your loved one. But it’s also natural — and incredibly important — to have limits and boundaries.
In these difficult spots, it’s important to take a step back. Be kind to yourself, as you would to the person in your care. Just because you slipped up does not mean that you are failing. Instead, it’s a chance to reflect, learn, and grow so that you can move forward and refocus on practicing patience and kindness — both for the loved one you care for (or the friends or the work colleagues you support) and for yourself.
Lesson 2: Authenticity is your greatest asset
I’ve re-wired my thinking to bring authenticity more into my life. It took me a whole year to openly say “I am a caregiver.” It wasn’t an easy step. But I like to think it was one of the best decisions I took. I am a lawyer, but I am also a caregiver. Both capacities intertwine. There is power in sharing it with pride and connecting over being humans as well as being colleagues or friends.
After doing so, I’ve noticed certain opportunities fade. But I’ve also noticed the opportunities that come through are far more enticing. I am engaged in corporate social responsibility (CSR), volunteering, and giving back to the community in causes that I believe in, where I can add value and be authentic.
I don’t volunteer for a cause, or take a project or job, or continue in a friendship simply because it’s there. I don’t misrepresent myself to be liked. I admit, taking off the mask will give you fewer opportunities. But the ones that get through are the ones you will actually want in your life.
It took me a whole year to openly say “I am a caregiver.” It wasn’t an easy step. But I like to think it was one of the best decisions I took. I am a lawyer, but I am also a caregiver.
Since I decided to believe more in authenticity, there have been fewer networking and community building conversations. I’m not delusional. It’s hard not to believe that being open about being a caregiver didn’t play some part in a negative perception of my abilities.
On the other hand, those who wanted to engage after learning about my story have had noticeable interest in further peeling back the onion to learn more about my journey with an open heart.
There is an element of taking the road less traveled that, in and of itself, conveys a value of authenticity. I came to realize that those who wanted to engage liked me because they can connect with me as a human than just a friend or colleague. What I thought was a liability was actually my greatest asset.
Inauthenticity is not self-care. Times have changed. I've changed. I’m grateful for becoming a caregiver because if I wasn’t one, I wouldn’t have become who I’m today both on the personal and professional level.
Lesson 3: Build bridges instead of burning them
You don't want to burn bridges, at all. Instead, try to stay well-connected with anyone who offers nonjudgmental support. I consciously set aside time when I can connect, even if it's just a virtual chat or taking someone out for coffee.
Even when I have to step away from something or someone for whatever reason, I do my best to not push people away. Most importantly, when I no longer want to connect with that person, I attempt to provide a positive (if possible) closure and leave the relationship on good terms.
Why? Because life is too short, and you don't control the future. Like the old Disney song says, “It is a small world after all.” You don't get to control who your future employer will call for a background check. Or whom you will need to refer you to land your next job.
I admit it can be really hard as a caregiver when you feel yourself being stretched thin by the new responsibilities and learnings looming over you to not push people away. We automatically become reluctant to invest in our relationships and network. It is expensive. Time is money for any caregiver, and networking needs time and consistent effort.
There is always someone who wants to help, someone who has gone through a similar experience or interests, or someone who has accomplished a goal that you also want to achieve.
Besides, many of us perceive it as asking for special favors. We sometimes don’t understand that building a network is another way of finding opportunities to thrive. It was important for me to invest quality time to build a network around myself and my new journey as a working caregiver. It pays to invest in every relationship. Consistency and having zero expectations were the keys here.
It is a false hope that a colleague or a friend or a family member I need will always be there to rescue me no matter what my relationship with them looks like.
My opinion is to put your networking skills to the test. You will be amazed, I promise. There is always someone who wants to help, someone who has gone through a similar experience or interests, or someone who has accomplished a goal that you also want to achieve. The trick is to go the extra mile and get out of your comfort zone to find that person (or people).
Expect nothing from the other person other than for them to be around to listen to you and for you to listen to them. But also, be proactively prepared with a list of ways that others can be in your life when they genuinely ask how they can help. Let them choose what they would like to do.
Build bridges. It takes time and effort, but the rewards last a lifetime.
Lesson 4: Shift your mindset and change the narrative
The mind is everything. What you think, you become. Our mind is a powerful thing. We can focus on the negative and stay there; negativity is stickier than positivity. But one thing I learned throughout my caregiving journey is it is all about the mindset.
I had to embrace an open growth mindset and embrace this new stage of my life with everything that it brings. Caregiving doesn't have to be always a negative, draining experience that turns your life upside down. Yes, a substantial chunk of it is like that. But it can also be a special opportunity to give back, and create a closer, deeper personal bond with the individual you care for.
It’s the same when we face anything new within our professional lives. We can take how each of us experienced the lockdowns and the rapidly changing post-pandemic remote or hybrid work environment, as an example.
Caregiving doesn't have to be always a negative, draining experience that turns your life upside down.
Of course, our experiences will be different. There is no right or wrong here. But good can come from current events if we allow it. To experience it as an opportunity rather than a burden, a change in mindset was required, as was a new focus on what I could learn and how I could grow in a positive way through the experience.
When my kid was diagnosed with Lissencephaly during the lockdown, it felt like the world was crashing down around me. I had mixed emotions about it. I was confused about how we would both face a society that has its own preset expectations about the special needs and disabled community.
A year into his diagnosis, I kept an open mind instead. I welcomed all resources that could support me in embracing my new caregiving capacity and shifted it into a growth and learning opportunity.
After tens of trials and errors, I finally got to enjoy several endeavors:
Volunteering virtually
As a mentor, I built a community of experienced professionals who held the same values,
Writing
Writing is my thing, hence, I started journaling and writing courses. Since the day I decided to share insights about my journey, I gradually managed to shift my mindset and change the narrative. I threw away all the burdens the caregiving journey brought and instead embraced the new learning experiences I went through, and the ones that shifted my perspective to the world immeasurably.
Here are my two cents. Changing your mindset doesn’t have to be a chore. The key to self-improvement is finding what works for you and sticking with it. Experiment with what helps you change from a negative fixed mindset to a positive growth mindset.
Reality isn’t what shapes our experience, our mindset does — how we think about reality. Our growth mindset changes our view of the world. Let’s change our minds to change our lives.
Lesson 5: Delegate and empower without micromanaging
Just like you, the people in your life need to nurture themselves. When kids are depending on you during challenging times, it may feel like it’s your job to engineer their social and emotional fulfillment. But it’s not, and you can’t.
If we look at this from a work perspective, many who are new leaders or new caregivers to someone with special needs can easily fall into the same trap. I admit I did at the beginning. We think we can do everything ourselves. It could be that some of us are perfectionists by nature.
It could also be that some of us find it hard to empower and invest the time to coach their team members. But in all cases, we forget that you CANNOT do everything yourself. Delegation, empowering, ditching perfectionism, and leveraging the 80/20 rule are all skills crucial to develop both on the personal and professional level.
Next time, ask yourself instead: What would help them be more independent? Instead of rushing in to fix things, remove barriers, and offer alternatives. This will give those you care for the sense of independence that we all crave.
Delegate so you can focus on what really needs your attention. It can sound like a tricky balance as a caregiver, but it is all about stretching yourself to learn a new skill. Connecting loved ones around you or your teammates with information and resources, and ensuring that their needs are met, is the key to empowering them.
Lesson 6: Mistakes are fixable opportunities
I will keep this one short and simple. As a recovering perfectionist, a simple way to start overcoming that perfectionism impulse is to apply the 80/20 rule.
I recognized early on during my caregiving journey that I cannot avoid making mistakes. If I made one and fixed it, it doesn’t mean I won’t make more mistakes. Every part of this journey is a trial and error. I can’t keep fine-tuning everything I do. It is not sustainable.
I picked my battles. I took some risks. I made mistakes, but I also reflected on my mistakes and owned up to them. They were all situations where I have learned the most and I was able to share those learnings with other Lissencephaly parents and caregivers. I owe it to the other special needs parents who also shared their experiences so I don’t end up repeating the exact same mistakes.
Most of us grew up associating our mistakes with being punished — with our results-focused society, there’s often no room for error — so it’s no wonder that most of us don’t feel exactly proud of them.
Most of us grew up associating our mistakes with being punished — with our results-focused society, there’s often no room for error — so it’s no wonder that most of us don’t feel exactly proud of them. It’s no surprise that our common coping mechanisms are shrouded in denial and avoidance, in pretending that we haven’t made a mistake.
But the thing about pretending that our mistakes don’t exist is that we end up doing those around us — and ourselves — a serious disservice. We create a world of damage when we don’t allow ourselves to be accountable for our mistakes.
Perfectionism handicaps our efforts, making every task a drudgery. Time to swap some of this perfectionism for a growth mindset, empathy, and self-compassion, because according to psychotherapist and author Anne Wilson Schaef, PhD, “Perfectionism is self-abuse of the highest order.”
Lesson 7: Knowledge is power, but sharing it is even more powerful
When ready, give back to the community.
I am reflecting on my own involvement with mentorship during the past two years. For example, I have mentored students through this amazing organization Grow Mentoring, and I love how they are changing the trajectory for young, underrepresented law students who don’t have the same opportunities as others their age.
Many of us were raised in environments where having mentors in our lives is the norm and we take this for granted. But like the idiom says, “Our value is not in what we have, but in what we give.” This is absolutely true.
Look at what you do best and share your knowledge and experience with others when you can. Share your experiences with students who will soon be hunting for jobs. Share your experiences with other special education needs (SEN) parents or new caregivers to other special needs kids or ones who have a disability and are there for them. Offer them advice.
If you are a caregiver looking for resources, check out the podcasts The Rare Life and Once Upon a Gene where parents offer grounded insights. They connected me with parents who have children with a similar diagnosis as my son.
Gift your time and experience so they don’t have to go through the same pitfalls. I have seen so many people withholding information from me. But I have met so many more who generously offered constructive advice, recommendations, and information so I can better navigate my new journey as a caregiver.
Seeking and receiving advice is an art. We don’t all have to struggle within our journeys. At the end of the day, sharing is caring!
One other way to do this is to share insights about your journey and experience. There's a lot more to LinkedIn than just a social media platform to share your own expertise, stories, and experiences. It's also about the important conversations that take place in the comments. The content we as humans put out there is merely a jump-off point to encourage these conversations.
The value is not me writing this article telling others what the answer is about an issue I faced. It is the community coming together resonating with stories like mine out there and telling each other what different answers could be.
But here is the catch, if you opt to share content on social media (be it educational, entertaining, inspirational, or solving a problem) to build your network, make sure to simultaneously offer grounded insights.
Lesson 8: Don’t procrastinate
Some of us have mastered procrastination like a pro. It is okay to slow down sometimes. But when it comes to caregiving, you must tackle things as they come up. Because the thing about caregiving is that it is wildly unpredictable.
You cannot plan when someone will get sick or fall or mess up the remote control or accidentally disconnect their phone and need you to come over. If you’re juggling caregiving with anything else — like your own life or career, you can’t count on having time tomorrow to get something important done.
It may feel restrictive not to have any goof-off time and that you are around the clock all the time, but staying on top of tasks frees you up for quality downtime. True relaxation stems from knowing you’re doing your best.
Lesson 9: Pace yourself
I don't yet own a startup business that has just raised a series round-up of funds. I am not a social media influencer with thousands of followers on my account. I haven't made it on Forbes’ 30 under 30. No, I don't plan to retire early and start my own company, and it's OK.
I am just your regular smart lawyer and caregiver to this angel warrior special needs Lissencephaly kiddo. Sometimes I'm boring. Some other times I'm stressed, and many other times I am fun to be around I promise.
The key thing here is that every journey is different. If you turn up every day for your day job, if you keep trying and you still fail. That is how you grow. And it is OK.
If your priority is to overachieve. That is OK too. If your priority is to take care of your family, and you aspire to enjoy life with a few personal and professional achievements. Guess what, that’s OK too.
The key thing here is that every journey is different.
Don’t feel compelled to do everything or things you don’t really like doing just because you see everyone else — who are on different journeys and paths — doing them.
Don’t worry about what they’re doing, worry more about you. Do the things you want to do that will make you successful, less stressed, and authentically happy.
Your journey. Your life. Your ownership. Your choice.
To my fellow caregivers out there, I feel your pain. When we are in the throes of caregiving, we may not have time in our lives for much else. It can be incredibly frustrating to defer a goal or a dream for our caregiving roles.
Yes. We feel behind our peers, hopeless like life as we knew it is over. Something I am trying is to be forgiving of myself and my situation. Some days I thrive. Some days I survive. But I celebrate my strength during all days.
I don’t want to end up regretting not doing my best during this journey. All we need to do is stay in the game, be better than yesterday; we don’t need to win it.
Lesson 10: Stop wasting time on what doesn’t matter
Every few months I sit down with a pen and paper and evaluate life. I write down our struggles and our triumphs, what has worked well and what has been disappointing, my worries and frustrations.
As I read through it, I ask myself will this matter in five years? A year? A month or even a week from now? You’ll be amazed at how much clarity that brings. What I feel like is a huge deal right now, may not have any significance later in my life. I’ve just wasted a lot of precious time.
Lesson 11: Learn to ask for help
If you have issues with asking for help, this is the time to get over it. Keep this in mind: People want to be useful. By allowing them to help you, you are giving them a gift.
Helping, in even the littlest way, gives people a sense of control and that can be comforting. Keep a list of things you always need. Whenever someone asks, “How can I help?” choose an item from the list, note their name next to it, give them their assignment, and send them a thank you note when you have some downtime.
Lesson 12: Remember to set the boundaries
Yes, you want to partner with your kid’s medical team and ideally create a strong working relationship with them, but your job is not to make friends with them. Your job is to be an advocate for your kid.
The same when you are working as an in-house counsel and working with our sales colleagues. Your job is to be an advocate for your company. That means always being the gatekeeper and it will be appropriate at times to question the sales team and to be assertive in seeking answers to ensure they aren’t moving away from following the process.
“Do the right things and great results will follow.”
– Gene Hall, CEO, Gartner
Lesson 13: Accept people’s strengths and weaknesses
If you are trying to manage your kid’s needs with the help of your parents or siblings, or other relatives and friends, play to their strengths and move past their weaknesses.
Now is not the time to try to “fix” your younger sibling nor ask your mum to “change.” If his or her organizational skills are nonexistent, do not ask him or her to coordinate the care team or organize the move to assisted living. You will just be disappointed. Give them something else to do.
Lesson 14: Take breaks
Interestingly, when I connected with peers with people recently after the holiday season, words and phrases like “refreshed,” “reinvigorated,” “clear-headed,” “rearing to go” have come up repeatedly.
But ask in-house counsel if they take breaks throughout their day and many will tell you they “don’t have time for breaks.” As with so many things in life, awareness is key. And I have learned it the hard way when I became a caregiver.
The next time you notice that drop off in productivity, ask yourself whether “pushing through” is going to increase your productivity, or whether 10 minutes meditating or walking in the fresh air will be better.
If you choose to push on through, be aware of what happens the next time you notice that drop in productivity: how you feel, the quality of work you’re doing, and the conversations you’re having.
These things accumulate over time. Good and bad. Yes, there’s a balance to figure out. That’s why experimenting is a good thing.
Remember, your body is exceptionally good at letting you know; you just have to listen to it.
Lesson 15: Give yourself a little grace
Recently, The Human Lawyer podcast offered me a chance of a lifetime to share my story unfiltered being the caregiver and the lawyer. We talked about tips on being a recovering perfectionist and how I managed to be more kind to myself.
But after we finished our recording, I kept thinking how I could have done a better job, how I missed highlighting this or that, and how I should have prepped more. But then I reminded myself of what I shared with Kevin Pratt during the episode: Be kind to myself as I am with others.
As working parents or caregivers, I wonder why we are so hard on ourselves? We push so hard, giving ourselves whiplash from the emotional rollercoaster. Our minds are screaming at us to slow down — and our hearts telling us that we need a break.
Embracing your human side is the kindest thing you can do for yourself and those around you, both personally and professionally.
We need to be kinder to ourselves. It is OK to slow down when you are coping with more. You have nothing to prove. There is nothing perfect or right about being a working caregiver or parent.
We all struggle. And that's OK. Because we are humans. Embracing your human side is the kindest thing you can do for yourself and those around you, both personally and professionally.
Keep up the change, it will be worth it! 2021 may have been one hell of a rollercoaster, but I still appreciate the ride, better yet, I am grateful for it.
