How Can I Manage My Worry When Raising a Child Who Has a Disability?



Mom and daughter

Constantly worrying is exhausting. Combining constant worry with trying to convince others that you are fine is a recipe for emotional disaster. I know all too well that it’s emotionally depleting to have lengthy conversations about how I really feel most days. I don’t want the pity that seems to be automatically associated with anything I will probably say. It’s exhausting to live a life in which worry and anxiety are the driving forces, and feeling like I can’t authentically share without burdening others.

There needs to be an honest conversation about what worrying does to a person – specifically to a parent who has a child with a disability- and how parents can manage.

There’s nothing quite like the worry that comes with all the uncertainties of raising a child whose needs are complex. It’s difficult to be waist deep in appointments and therapy. It’s difficult to manage your emotions as you think about the future – a future that may continue long after you as a parent, are gone, and your child remains. It’s difficult to feel completely alone in a world filled with billions of people. And it’s in the most difficult moments in life that worry can take deep root into the heart of overwhelmed parents.

Now, realistically speaking, it’s impossible to never worry because worry does begin from a place of love. Genuine concern is a display of innate humanity and the profound love a parent has for their child – and it is that concern that allows parents to guard and protect their child from harm.

However, worrying is progressive and dangerous. It slithers in and takes residence in the lives of genuinely concerned parents and can keep them in never-ending panic. It can become all-consuming that it eventually feels more like drowning than actually living.

So, what can be done about worrying? Although there are so many unique circumstances that can lead a parent into an Alice in Wonderland type of rabbit hole of perpetual worrying, here is what I am trying to do to combat against the strongholds of worry.

I try to make a conscious choice to live in the present – not in yesterday’s struggles or in tomorrow’s uncertainties.

Gosh, I know that seems like a cop-out and it sounds cliché, yet it’s still so difficult to do. But never in the history of ever, has continuous worrying created anything beautiful in a person’s life. On the contrary, it’s the ultimate thief of joy and happiness. I cannot change yesterday and I cannot control or predict tomorrow, so I MUST stay in the present and take life one day at a time – doing my best to not let my mind wander to the things I cannot change or control.

I try to focus on all the resources and abilities I have.

Parents never give themselves enough credit for practically being a superhero every day! I must remind myself that I bring many things to the table of motherhood besides being a food-maker and diaper-changer. I need to take inventory of my strengths and know that those abilities can serve many purposes – including being a better advocate and caregiver.

There’s also the power of the Internet, which can allow anyone to access endless amount of information for guidance, whether it’s about the proper documentation needed to make future plans or just information on how to help your child engage in their community. Sometimes a little information can give you a breath of fresh air!

I try to pay no mind to what others think.

Worrying about what others think about my daughter and potential judgment is something that is outside of my control because I cannot make others see past her differences – that’s a personal choice. That worry has the power to limit the number of activities we choose to do or cause us to avoid going to certain places, which is something that shouldn’t be dictated by others. I remind myself to refuse giving others that type of power over our lives, which allows my family to move freely without worrying about public opinion.

I try to not stuff away my worry.

As an extrovert, I consider myself an open book, but I understand that not everyone is like that. Whether you take up online blogging or write in a journal that only you know about, getting things out and talking them through are therapeutic for the soul. In doing so, you may find wisdom as you can look back and see how far you’ve come as a parent and as a person.

For me, it was the moment that I decided to find community online and engage with other families that I felt the significant amount of weight on my shoulders begin to dissipate through comradery. Whatever you do, whether it’s an art-form or charity work, find a way to use your worry for something constructive.

“Worrying is like a rocking chair. It will give you something to do, but it doesn’t get you anywhere” – a wonderful Proverb that is a powerful reminder. Often, as parents, we forget about actually living an intentional life because we are so far ahead into the future or wrapped up in all of the daily chaos that it’s difficult to appreciate the beautiful gift it is to simply be alive. There is no negating the fact that life can be very worrisome, but by reeling in the worry that’s defeating, we allow ourselves the opportunity to truly enjoy each day with a fresh perspective.


Ileana is the voice behind The Special Life of Us, a personal blog where she shares her perspective on motherhood and learning how to navigate through the world of cerebral palsy and microcephaly with her youngest daughter. Ileana is a wife, mother of two girls, and resides in Corona, California. You can follow their adventures on the blog, and on Instagram + Facebook.

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