Spoonie mom and her child.

5 Things the Spoonie Mom in Your Life Wishes You Knew

Today was Mother’s Day here in the United States. 

It is a day to reflect on the way our mothers and the mother figures in our lives have sacrificed for us, cared for us, and provided for us, all because of how much they love us. It is a day to give back to those women, because so often they are overlooked and underappreciated.

A spoonie mom holds her infant child and a baby doll and smiles.
Spoonie moms are just like other moms – except tougher!

Perhaps no one is as underappreciated – and vastly misunderstood – as those mothers who are chronically ill or disabled. 

Often misconstrued as absent, aloof, or just plain uncaring, these mothers are some of the strongest people in the spoonie community. They hold weight that many people could never carry on their shoulders every day – and they make it look like no big deal to carry.

Now, full disclosure – I am one of these mothers. 

I don’t necessarily consider myself some kind of hero. But I do consider myself a hardworking and dedicated parent, who like many other disabled people, gets overlooked in terms of what I do for my family. 

I’m not asking for more appreciation from my children. Today, I’d like to tell you a few things that I – and the other disabled and chronically ill mothers in your life – want you to know about what we really deal with just to be there for our kids.

(Note: I use the word woman and she/her pronouns throughout this piece, but I would like to stress that any person who thinks of themselves as a mother absolutely is one, and gender and pronouns do not a parent make. This list is just as true of chronically ill fathers and disabled nonbinary parents and parental figures, but they’ll have their day to be celebrated as well!)

What the Spoonie Mom in Your Life Wishes You Knew - Title floats over a mother cuddling her infant daughter.
Do you really know what it is like being a “spoonie” mom?

Caring for Her Chronically Ill Body is Like Caring for a Child

Something that those who are not chronically ill may not realize is just how much work and forethought these conditions can be. Having a chronic illness or disability is very much like having a child – or in this case, another child. Your condition needs regular monitoring, is always somewhere toward the front of your mind, and may prevent you from doing some of the things you would like to do.

This is not to say that parents cannot lead full and fulfilling lives with chronic illness! Just as compromises are made to allow for children in someone’s life – such as finding childcare to allow for work and social engagements, budgeting, and careful planning to ensure that a child is always cared for – so too is this kind of forethought important when caring for your chronic illness or disability. 

It is just one more thing that a chronically ill mom has on her plate.

No Matter How Well You Know Her, You Don’t Know It All

You may have a friend, loved one, or even a partner who is chronically ill or disabled and believe that you know everything there is to know about them. Even if you share a home or parenting duties with them, though, there will always be things that you don’t know. 

These gaps in knowledge can make for difficulty understanding the way that some chronically ill mothers parent their children.

Maybe the mom in question lets her children stay up later than you think she should. Maybe she lets them eat pizza, macaroni, or chicken nuggets more often than you think is advisable. Maybe she grants them too much freedom when it comes to screen time or other privileges.

The fact is, the world is not comprised solely of perfect mothers and terrible ones. It is made up of many millions of people doing the best that they can every day to provide for and love their children. If that means occasionally letting our children get away with things that we would like to be stricter about, that’s just the kind of sacrifice that a chronically ill or disabled mom may have to make that day. 

Unless a child is being seriously mistreated or neglected, there’s really no reason to comment on it.

She is Already Aware of Her Limitations & Shortcomings

Let me tell you something from the perspective of a mother who is chronically ill and has been for basically the entire time I have been a mother: I am already well aware of every way I fall short of society’s expectations of me. 

I’m sure I’m not the only one who feels this way, as one of the biggest complaints I hear from sick and disabled mothers is that we are constantly reminded of how we don’t measure up, even if our children are doing just fine.

You don’t need to remind us. You don’t need to point it out. 

Maybe your spouse is still wearing the same sweatpants as yesterday. Maybe your best friend hasn’t left the house in weeks. Maybe your sister hasn’t been able to bring your niece and nephew to the park to meet you and your children the last few times you’ve asked. 

No matter how you’re feeling about those things, I can promise you, the chronically ill mom in your life is already well aware of – and probably feels pretty awful about – all of it.

What She Can Do Today Might Not Be the Same Tomorrow

I grew up with a chronically ill mother. In many ways, it helped make me the mother I am today. 

I mean that with every ounce of love and positivity, because my mother’s health problems taught me a very important lesson about being a human trying to raise other humans: People have bad days. Even moms.

There are days that I can clean my entire house, walk up and down the stairs to do laundry, work out in the yard with my husband, and walk all over big box stores to grocery shop with my kids. These were all things I saw my mother do while I was growing up, too. 

Likewise, though, there are days when I cannot take the stairs, or when I have to tell my kids that I cannot take them to the park or even to the grocery store because I can barely get out of bed. These were things I saw from my own mother as well, and never once did I think of her as lazy, as uncaring, or as a bad mother.

I thought of my mother as what she was – a human being, with good days and bad days. It wasn’t until I was older that I realized she might have more bad days than some other moms. 

I am the same way. And my kids, largely, are just as understanding. If they can offer me the same understanding, patience, and love that I hopefully offered my mother, why can’t more adults do the same for our chronically ill friends and loved ones?

She Loves Her Children – Even if Her Love Looks Different

Perhaps the biggest thing that chronically ill mothers want people to know is that they love their children. They would do anything for their children, and just like mothers of every stripe, they do. 

While we may not be able to do the same things that our children’s friends’ mothers can do with them, it does not mean that we love them less.

Oftentimes, we push through circumstances that would absolutely stop others in their tracks just to attend track meets, cheer competitions, weekend tournaments, or school plays. Many times when it looks like we are falling short or “phoning it in”, it’s really because that’s the best we can do at that moment.

This Mother’s Day and every day, take a moment to pause and reflect on the way the women in your life sacrifice, push on through difficult circumstances, and provide safe, loving, supportive homes for their children. Then, try to imagine doing all of that while wrestling with a lifelong illness or disability. 

It is by no means an easy task, but for most of us, it’s the most rewarding thing we have ever done or will ever do. We would just appreciate your patience and understanding while we do it!

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