I became disabled shortly after the birth of my second child in 2022. Learning how to mom disabled is an ongoing process.
Acute postpartum mental health disorders and medical trauma severely affected my daily living. For many months I was not able to care for myself or my kids effectively and beyond that, I have been unable to work. As a lifelong worker bee, industrious and proud of my work with children with special needs, this was not only a huge blow to my confidence and self-image, but also uncharted waters for my family financially.
I applied for Social Security disability benefits and was ultimately recognized as “officially disabled” 18 months into my struggle. Just a few weeks later, the universe dealt me a double blow: I experienced a brain hemorrhage and was diagnosed with a pituitary tumor. The damage sustained to my pituitary gland left me unable to produce many of the hormones needed to live and function normally.
I was trying to accept my disability status while also dealing with a long, uncertain health journey. My health began to fluctuate hour by hour every day. I entered the choppy and unpredictable waters of chronic illness. continuing to do my best to mom disabled has been an exercise in frustration, patience, and humility.
As a disabled mom, my physical and mental health are still all over the place. Every day, I battle overwhelming hot flashes, debilitating fatigue, persistent headaches, digestive troubles, swelling in my limbs, unpredictable mood swings, and sensory overload, among a myriad of other challenges. But every day, disability or not, I still wake up as Mom.
I put all the energy I can muster into raising my children. My husband is out of the house from 6 AM to 4 PM and I am left with our 2 and 8-year-old daughters.
It is challenging to balance my health needs while ensuring my kids’ needs are also met. You may wonder what magic I possess that allows me to play with my kids while still managing some of our household chores and adjusting to my disabilities.
What I am about to share isn’t profound wisdom, nor is it limited to parents like myself who are managing disability or chronic illness. So, are you ready to hear the truth about how I manage it all?
I don’t.
There is no scenario in which I can completely care for myself and my children to my fullest potential every single day.
The reality is that I’ve needed to significantly scale back my expectations and lean on others to support me. I am actively working on embracing this challenge, recognizing that acceptance, like any skill, requires practice. I may mom disabled, but this doesn’t make it easier to ask for or receive help.
There are, however, some key mindset and lifestyle changes I’ve made to mom disabled that have made this journey more bearable. These steps are critical for any disabled mom.
1. Lower Your Expectations
As someone who has always taken great pride in being able to “do it all”, this one is the hardest shift in mindset. I have to accept that I can’t be the Pinterest mom. Heck, I can’t even be the mom that goes to school functions most of the time. But, I can be the mom that holds her kids in the quiet moments. I can be the mom who makes the best boxed Mac & Cheese with Dino Chicken Nuggets. I can be the mom who cranks Taylor Swift while watching the kids dance from my spot on the couch. At the end of the day, if my kids are fed, clothed, and know that I was there for them, then that’s all that really matters.
2. Accept Help
I never want to be a burden to those around me, but I often feel like I am. I have had to fight back hard against this notion more and more lately. If a friend or family member sees me struggling and offers to help, I need to accept it. If I push myself beyond my limits, my body makes sure that I am useless to anyone until I recharge.
3. Ask for Help
This may be even more challenging for me than accepting help. In the early stages of my journey with disability and chronic illness, I was absolutely terrible at asking for help. I wanted to do as much as I could on my own. As time has gone by and my burden of burnout has intensified, I’ve gained a deeper awareness of my limits and learned to proactively seek help when needed. This can be in the form of childcare, errand runs, or seeking community assistance.
4. Communicate
Communication is absolutely essential in making sure our household runs smoothly. This means being honest and vulnerable with my partner and with my kids. When I am feeling sick, which can happen several times each day, I need to let my family know. When my illness is affecting my mood, I need to be clear about that. When I need my partner to pick up a little more of the mental load, I can’t just assume he will know that. Being clear about my disability and chronic illness helps my family understand my situation and limits. It also sets a good example for my kids and encourages them to be open and honest about their feelings, both emotionally and physically.
5. There Are No Rules
This is a phrase my husband coined when I was very fresh in my disability journey. There are no rules in terms of what this journey needs to look like. Every day is different, and my needs and my family’s needs constantly change and evolve. Some nights that means cereal for dinner (my kids certainly won’t complain) and some nights that means actually getting out of the house for a little while!
There is no “right way” to live with disability and chronic illness. We do the best we can to be happy and to be together.
I am not a medical professional, but I am an expert in my lived experience. What I’ve learned above all else is that trying to mom disabled does not make me an unfit mom. It doesn’t even make me a bad mom. I can be a chronically ill and disabled mom AND still be a damn good mom; both things can exist at the same time.
Do I need to remind myself of these things daily? Yes. Do I have tough days that end in tears? Yes. Do my kids know how much I love them? Also, yes!
I have no idea what the future holds for me in terms of recovery. I don’t know how long I will be trying to mom disabled. I don’t know if I’ll ever be able to hold a regular job, join the PTA, or be a soccer mom. But, I do know that I will never waver in my dedication to making sure my children know just how much being their mom means to me. I’m a disabled mom and I am the best mom for my kids and family.
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