The sudden realization of the sheer enormity of the work I do came crashing into my psyche when I heard these five words:
“…but Natalie, you don’t work.”
The tone and insinuation of the conversation prior to that comment was suggestive that I didn’t work at all. I recall this conversation so clearly because I was literally shocked into silence. I didn’t even say another word.
Instead, my mind began to unravel my memories of the past four years since my child was diagnosed, and all I could see was an enormous amount of “work.” So much work that not even my previous 10-plus-year corporate job managing multimillion-dollar accounts came close to the workload I have carried since becoming the parent of a child with a disability.
The hidden workload was obvious to me in that moment because clearly the other person had no idea what went on behind close doors, waiting rooms, hospitals, therapies, and more.
I created this image of the day a parent receives their child’s diagnosis:
Not only are they handed the difficult diagnosis, but along with it, a pile of paperwork is strapped onto their back, twice as high as their height. I picture these families walking out of the hospital, dazed, confused, and in a realm of sudden shock. This imaginary pile of paperwork attached to their back gradually gets heavier as the disability journey unfolds. Not only are parents in the process of grieving for themselves and their children, all of a sudden they have been tossed into the confusing labyrinth of the medical system with so many unknowns. Now their entire world and calendar might revolve around hospitals, therapies, equipment, trials, and more.
It all starts here for some of us. In our case, it was the first place the doctors dropped the D-words: diagnosis, disability, disease.
All of a sudden, your child and their health care are dispersed among different departments within the hospital — neurology, orthopedics, genetics, developmental medicine, etc.
Each department interconnects in some way, but you have to continue to place the pieces of the puzzle together so, as a parent, you understand the picture as a whole.
Each department requires their own medical tests, like EEGs, X-rays, blood tests, or the like. So often, each individual appointment branches out to other departments of the hospital where testing or results are required.
Then if surgery is required, it adds a whole other complex web of appointments, preparation, and aftercare. The secondary effects of the child’s condition can sometimes create even more work and medical care than the initial diagnosis itself.
Early Intervention and Services
Then come the links to early intervention services, independent companies, or organizations that can help you navigate the system, associated therapies, and equipment. Often referred to as “key workers,” they act like an advocate for your child. Sessions are scheduled fortnightly or weekly, depending on the needs of your child at the time.
Now, you remember when I was telling you about the various departments within the hospital and how different information was needed for each doctor? Well, same goes here.
There is a team of specialist practitioners who do not work in the hospital, so you continue to book appointments which are ongoing because your child’s condition does not go away. Thus, the care often gets more complex as the child grows and new needs are required to be met.
We live in a paperless society more than ever these days with online services, but I have four massive folders full of medical paperwork, reports, tests. Reports that no parent would ever want to have associated with their child, with medical jargon that seems surreal.
Have you ever filled out a form that asked you about your medical history in detail?
For many of our children, this section of the form alone would fill up many pages compared to most typical adults.
Forms need to be filled out, filed, sent, updated — it goes on and on and on through each stage of the child’s growth and development.
The calendar, oh my goodness, where to start? We have a monthly At-A-Glance and it’s chock-a-block with our daughter’s appointments all year round. Then there are your other children and their needs around schooling, social life, and beyond. Then there’s the “Oh sh*t, it’s the school excursion today, and I haven’t prepared the required things!”
It’s getting to school drop-off and pickup five days a week for your other child, which is challenging when you have your child with a disability with you.
Social gatherings take a back seat, not by choice, nooo way. We miss our free social spirits that flowed before our parenting lives changed with the birth of our second child. It’s like walking on a tightrope; there’s not much flexibility to break the fall, so you need to prioritize your own child’s health and family’s needs above all else.
The Mental Load
The to-do lists grow and expand with the constant adjustment and reshuffling of time slots for therapies, specialists, and hospitals.
Long wait times on the phone are part and parcel of this gig!
You have to make sure you’ve planned meals for the family and child with a disability, which is often disrupted due to time spent in transit, waiting rooms, and appointments.
Then there’s all the little things like remembering to put the recycling and trash bins out, home maintenance, school concerts, gym classes, readers, school homework.
It’s the juggle between their child with special needs, their other children, and — yep, you guessed it — themselves.
Then there’s the constant worry.
Many parents of children with disabilities fall asleep at night worried if their child will make it through the night.
Can you just stop for a moment and reread that last sentence?
Take a deep breath in and out.
Can you even begin to imagine the anguish that comes along with that? For many children, their medical needs are serious and life-threatening, and that alone is a massive job for any parent to bear.
Some families live with constant medical machines in their houses beeping through the night, alarms to wake the parents should their child have a seizure, or medications to administer and much more. Many live with the constant fog of worry and exhaustion, making patience and perspective feel so far away.
Health and Self-Care
We hear it all the time: Look after yourself first.
In many cases, it’s just not possible given the child’s ongoing needs.
And this is where the self-care space can get a little tricky.
There’s this emotion called “guilt,” and I tell you, so many parents of kids with disabilities and medical needs experience it. Guilt for placing their needs first or for taking time out for respite.
The fact is, unless you prioritize your health and wellness, you will not be able to provide the exceptional level of care your child needs. A rested parent, especially under the circumstances of complex health conditions for their child, is paramount.
Physical Workload and Preparation
The amount of extra physical care and effort that can go into the day-to-day is huge.
Dressing: Children who perhaps are unable to sit, stand, or help to facilitate the dressing process. There’s lifting, moving limbs, and balancing shifting weight.
Lifting: There is a lot of lifting of growing children into multiple pieces of equipment, like a wheelchair, toilet seat, shower seat, standing frame. There’s moving them from room to room, in and out of the house, then out into the world. Just a quick trip to the local supermarket can be pretty involved.
Organizing: The preparation involved to ensure that the right piece of equipment is available, or else you may be stuck at home if your partner has accidentally taken the car that day. There aren’t many plan Bs if you have a child who cannot sit or walk and you don’t have any equipment.
Feeding: Safe feeding with puréed food is necessary as some children are at risk of aspirating or are tube or PEG fed.
Communication: Deciphering your child’s needs when there is no verbal speech can be difficult. Again, a complex amount of time and space is taken up by parents wondering, Did I provide the right thing at the right time?
Was their child hungry, or did they have an itch on their back that they couldn’t reach? Did they need to go the toilet, or did they want to wear the other shoes? Were they feeling unwell, or were they just extra-quiet? The guessing game alone can take up so much mental space.
So let’s rewind back to that initial conversation, you know, the one about “working.”
Now, I could have responded by saying I created two websites: one for my child, to further advocate and share our journey in the hope of helping her in any way possible, that I was the sole content creator and responsible for responding to every single message that came my way from a parent in need or the community in general. The other website I created to build an online business and support other moms, like me, whose motherhood experience changed in an instant.
I could have explained I completed a globally recognized coaching course in random places, like waiting rooms, hospitals, midnight wakes after resettling my child, in the car listening to the course modules, and during rare times of respite. I could have explained how many times I just felt like throwing everything into the “too hard” basket and giving up.
Yet through all the ups and downs, I continued to try to make the best of our challenges while also trying to help others.
I could have explained I was using every inch of my energy to try to create a space in which I could still work and honor being a full-time caregiver.
I could have explained so much more.
Yet I didn’t.
Because I know I am doing a brilliant job, along with my husband, in meeting the demands of our family, let alone a child with a disability. And when I say “brilliant job,” sometimes that brilliance shines most when I have simply shown up — exhausted, tired, and in tears after a patch of hospital stays or post-operation chaos… or more. Because I did just that: Show up!
I know across the globe there are hundreds of thousands of parents who are working around the clock to raise a child with additional needs.
I know so much of the work goes on largely behind the scenes.
I know that for many parents they have never worked harder in their entire life until now.
So next time someone questions your “work,” please take a deep breath in and slowly exhale. Plant your feet firmly on the earth, stand up tall, and know in your heart and soul the incredible job you are doing. Know it, feel it, emanate it. Do not for a second question it!
Thank you for the incredible amount of work you do in making not only your child, but the world a much better place. And for the work (paid or not) you do.
This post previously appeared on The Mighty.