written by Susanna Peace Lovell
Self-care has been at the forefront of my journey as a special needs parent but it has taken many years of practice and training for me to get to the place where self-care is actually a non-negotiable part of my life.
Studying for years under my spiritual coach, Suzi Lula (www.suzilula.com) I learned how to redefine self-care. It’s not necessarily just about eating well and exercising. It’s about listening to and honoring what is currently going to serve my highest good in moving forward and staying connected to honoring the needs of my truest self.
Deepak Chopra gives a guided meditation around “Making self-care a priority” and shares this definition: “Self-care means directing our thoughts and feelings toward actions that support ever present awareness.”
Self-care is a dynamic practice and can take different form each day. I wake up in the mornings asking myself, “What does self-care look like for me today?”
I love the deeper work around redefining self-care. Most humans on earth agree that health and wellness are paramount to living longer and fulfilling lives. Yet, when it comes to us as a parent taking focus away from our child (in any capacity), the guilt creeps in. We live in a culture where sacrifice and suffering is revered. We praise new parents who don’t have any help. It’s a stamp of good parenting, in fact. I’m not saying that everyone who proudly states they are “doing it themselves” is not authentically and joyfully engaged in parenting bliss. All I’m pointing out is that it is much more likely to hear accolades for those who don’t have help than for those who do. This is where the judgment comes in and where the guilt finds us for leaning into help when we need it. Obviously, this narrative needs to shift.
A few years ago, I was inspired to put together a handbook on everything I’ve learned about self-care and “7 TOP TIPS for Self-Care as a Special Needs Parent” was born. I shared these teachings during a session at WABT’s first annual virtual retreat in September and now I am happy to share them in our blog!
I will share each tip and some insight behind each. Let’s take a breath together and dive in!
Tip #1: Speak Your Truth
What does this mean: to Speak Your Truth? For me, it means to know who I am, what works and what doesn’t work for me, what feels in alignment with who I am and what my purpose is. It also means that as a parent to know what may or may not work best for my child. Do I know exactly who I am at every crevice of my being? No, I am still in the process and it changes along the way. We do not need to know 100% of ourselves though in order to speak our truth, we just need to tap into who we are in this moment and how we can stay in our integrity.
What I do not mean by speaking your truth is to feel like you have to share all of your innermost secrets and private feelings. No. What I mean by speaking your truth is to speak up as advocates for ourselves and to be comfortable and give ourselves permission that whatever our truth is in this moment is OKAY. It also means to shine bright, not dim our light and not apologize if our truth is different than what someone else wants it to be.
Tip #2 – Just Say No
Just Say No is like Speak Your Truth’s cousin and involves a very similar process of being aware of your needs and speaking up. I am sure as parents we can all relate to being asked to do things, pay attention to things, help with things, participate in things, organize things, engage in things .. the list is endless!
In my experience my “go to” response when a YES or NO request is posed to me is to say YES. I rarely think before I respond and often find myself in situations where I said YES to committing to something that I would much rather say NO to. Sometimes I don’t even realize I would say NO, but if I dig deeper, I know me saying YES is out of guilt or wanting to feel loved, wanted, appreciated and / or needed. Shifting this habit encourages my energy to create the space in my life for higher vibrational activities to enter in. Saying NO to the things that do not serve my intrinsic purpose will create space for more things that are in alignment with my being and purpose.
Tip #3 – Release The Guilt
What parent isn’t familiar with the feeling of guilt? I feel like the majority of my life has been a response to guilt whether it’s working hard in school, following the rules, using good manners and behaving well. I feel like if I don’t act expected ways in every scenario, then bad things will result.
I also have a crushing personality trait in which I feel like everyone else’s needs are greater than mine. Motherhood exacerbated this already deeply ingrained character flaw. I learned that being a mother meant to be in constant sacrifice. I also know now that releasing the guilt is going to open amazing pathways to abundance and joy. It’s not an easy process but practice will build up this muscle and it will become easier. We will experience freedom and liberation when we do this.
Tip #4 – Receive Help
Tip #4 is Receive Help. This is a big challenge for me. I admire everyone who allows themselves to receive help. Receiving help from others has been one of the biggest lessons for me as a mother. I never want to be seen as a taker or as someone who can’t figure out life on their own. Learning to receive help and acknowledging that I am not being selfish or greedy when doing so is a daily practice for me.
Tip #5 – Let Go of Expectations
To Let Go of Expectations is to lean into situations where you have to release your ideas for how you want things to live and be. It’s an important spiritual practice of leaning into the flow of life and letting the universe take over. It really has nothing to do with us; things are going to happen as they do. It is up to us to decide how we are going to respond.
Tip #6 – Get Comfortable with Being Uncomfortable
The next tip is to Get Comfortable with Being Uncomfortable. This is one of the biggest challenges I’ve had to face as a parent to a different kind of child– being uncomfortable and learning to stay in this discomfort. We do everything we can to avoid discomfort. I know when it comes to raising my child, my experience has largely been one where I am intervening, avoiding situations, apologizing profusely to strangers and overcompensating for lack. Leaning into the discomfort will help us evolve and grow.
Tip #7 – Find Your Joy
There isn’t an order to practicing these seven tips, but Find Your Joy is certainly my favorite one. I almost didn’t include it because I thought it was a given as a spiritual practice. But just as self-care is considered indulgent, finding joy might not be seen as necessary or important. We bow down to sacrifice and hard work and suffering and sleepless nights. Finding your joy can be viewed by others as a hobby, when in fact, it is integral to balancing out life so that you can be more productive and creative and flowing in your life calling. I am grateful that I have found a life calling that brings me so much joy.
At the end of the day, we are seeking joyful lives, and the quickest and easiest way to tap into this portal of unlimited JOY is to be ourselves: speaking up, saying no, releasing guilt, receiving help, being comfortable with uncomfortable things and more. We are going to create space for more goodness in our lives (more than what we could have ever imagined) by just BEING OURSELVES. It is a simple concept and sounds easy but requires consistent practice. We have been wired to respond and behave differently by society and family generations before us – to be and do what is socially accepted and revered. This is sometimes but often times not always, compatible with who we really are and more importantly, how we really want to be. Our purpose needs to include the full expression of our true selves. I’m honored to be by your side in this practice!
Self-care is a life-long practice for me. I am grateful to share the tips that have helped me on this journey. For specific steps in practicing each tip, please download a PDF of my handbook (for free!), here: https://www.susannapeacelovell.com/. Or feel free to email me directly for access: email@example.com. Honored to be on this journey with you all, my dearest community!
written by Izzie Duval
When our sweet 4 pound baby girl came home from the NICU in September 2018, we broke the news to all of our friends, family and church that per our pediatrician’s recommendations, we would be entering a six month quarantine to protect our sweet Dallas’ lungs from viruses, we were generally met with a somewhat perplexed response...
Most people had no idea what we were talking about, much less any idea why we would do such a thing, but we took it in stride.
My previously social husband and I said “no” to all visitors, met grandparents at the door with hand sanitizer, and asked gracious church members not to expect a visit when dropping off meals for us. I got a big red sign that said “STOP I am a premie!” for the carseat and learned how to do a not so subtle “side step” away from the so-called Karens of the world whose hands reached for those of my precious girl’s while on walks. Mama Bear vibes strong from the get-go.
At first, quarantine was….nice! Our life had been nonstop as long as we could remember, and being home with our baby was peaceful - sleepless, but still and calm. I Facetimed friends and saw my parents when there was not a sniffle to be found. We breezed through the holidays, watching Christmas movies, doing cute little Instagram updates and generally enjoying the coziness of being a new little family.
Then January came.
Despite all of our best efforts, sweet Dallas caught RSV and we ended up back in the hospital. She was extremely sick. On day 5 of the virus, while my husband ran home to take the dogs out, Dallas’ O2 sats plummeted, codes were called and I found myself uttering the only words I could think of - “Jesus, help her!” while medical teams rushed around me reviving my tiny girl. We had already nearly lost her in the NICU, I couldn’t go through this again...but I did. And she made it, again. Having crossed the PICU off our list of *fun* vacation spots, we settled even more into the quarantine, with a gut instinct that this decision was inexplicably life-saving for our baby girl. Many thought we were nuts! Most misunderstood. But we knew it was temporary - or so we thought.
That winter I learned a lot of ways to keep my mind busy, a true act of self care for my anxiety disorder and undealt-with PTSD. I listened to every podcast I could find about the NICU and motherhood. I dove headfirst into a wild TED Total Elimination Diet to help my baby’s food intolerances. I watched every episode of Call the Midwife and relished in my evening glass of wine. Stuck in isolation, I can’t say my mental health was good, but I survived. It’s what us mamas do.
And then...Spring came! And we were free! (Or so we thought.)
We made it through the long winter and despite Dallas’ challenges with RSV, food intolerances, reflux and colic, plus seeing only a handful of humans for 6 months - we were in relatively one piece. I remember the first time I took Dallas into Target with me. Prepared with hand sanitizer, toys, snacks, and water, I carefully situated her in the cart, looked at her sweet little chubby cheeks and said “We made it, baby girl!”
Summer of 2019 was JOY to us in so many ways: friends, pool time, big family gatherings, church, eating out, coffee shops, day trips to the zoo and the aquarium.
But that Fall my girl’s health started to go downhill again....she was sick constantly and strange and scary neurological symptoms had begun to pop up. That December, Dallas was hospitalized again for a week, at first we thought with the flu, but then suddenly everything changed: my one-year-old was getting a CT and neurology was contacted for an emergency appointment...something was seriously wrong. And just like that we were thrust into the medically complex world.
We made the heart-breaking decision to return to quarantine again until Spring.
No more coffee shops, no more church, no more friends, no more Target!
(Can someone say “No more Llama llama drama!?”)
It’s just one more Winter, I said to myself. You can do this.
So we stayed home once more.
This time, though, it was anything but peaceful. We were in the midst of a rare diagnosis process for our 1-year-old, who was having daily migraines and terrifying attacks of seizures, paralysis, and bizarre neurological episodes. Tests were being ordered, specialists referred, therapies beginning and it was HARD. It felt like a pretty strange world when I found myself dressing my toddler in cute party outfits for her specialists appointments because when else would she wear these? I spent most of the second wave of our quarantine learning how to be a caretaker and an advocate, reading research articles I barely understood, joining a thousand Facebook groups and diving headfirst in the beautiful secret that is the special needs community. We kept pushing for a diagnosis. And we kept pushing for April, our light at the end of the tunnel.
Then, one day in March my husband told me to stock up on toilet paper...
And suddenly everyone knew what Quarantine was!
At first I thought it was convenient (and a little funny) that everyone would join us in our last “month” of Quarantine #2. Ohhhh my sweet, sweet little mind, how little I knew...
I’ll spare you the details of the Corona Quarantine in our house because I have a faint notion you may already know what it’s like.
So now, it’s almost 2021 and with the exception of that beautiful Spring in 2019, we have been living in quarantine for well over two years. It’s more normal to us than life outside of our little house at this point. It’s often boring, usually messy, and my husband is nearly always the only one to make it out of pajamas. But as I sit here on my couch in the same sweatpants I’ve been in all week, watching my beautiful 2-year-old next to me work on standing, I thought I would share a few things I’ve picked up along the way. Now, I’m not here to tell you to get dressed and I have no clean diet tips (I’ve drank my weight in wine in 2020 alone). But I have lived in the lonely, seemingly forgotten place of a long-term quarantine for years now, so I would like to share what has helped me stay sane.
Reframe Friendships. Relationships can grow and even begin during a quarantine.
We are so used to in-person friendships that it can feel impossible at first, but it’s a real thing.
Katie. Annie. Rosie.
These are the names of three women I met in 2020, became friends with, and talk to nearly every day now. I have never met Katie in person and Rosie and I have really only seen each other through our porch windows during Starbucks drop-offs for each other.
Find Your People. Join the Facebook group for your child’s diagnosis. Use hashtags to find people in similar situations. Reach out to the mom who you relate to. Just find humans who make you feel less alone! This has been vital to our journey.
Listen to human voices (actual voices) that resonate. Podcasts and audiobooks have been my “friends” when I had no friends to talk to. Hearing other adults talking, and even moreso, talking about things you relate to can help keep your brain busy thinking about positive, productive things (rather than the dumpster fire that is the news or the feelings-a-thon this enneagram 4 loves to bask in on a bad day.)
Get Lost in a Story. My go to is a good YA novel series on audiobook. Sometimes a good series to stream. It gives me something to look forward to and makes doing the dishes a b it less dull.
Trust That it WILL End.
We’re still quarantined now and will be until COVID is well managed in our area.
So whether you’re isolating by choice or by mandate.
Or you’re a mom of a NICU baby staying home for the winter.
Or whether you’re feeling stuck and alone for any other reason.
This too shall end.
And I can assure you, we’ll be right here.