The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown comes back to share three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram.
When I first discovered Anna on Instagram, I fell in love with her popular series “Confessions of a Special-Needs Mama.” Each post features a photo of her holding a letterboard with a confession written on it, a caption with an ultra-relatable confession, and scores of comments proving I’m not the only one with whom she resonates with.
Anna has a gift, and I was delighted when she agreed to dig into her confessions in her special-topic episode.
She said the idea came to her when another Instagrammer did “Confessions of the Perfect Mom.” They were real, raw confessions that so many moms were afraid to admit but felt so strongly. She saw the way it helped so many people and knew she had to do her own version for the people in her corner—special-needs moms.
Often as she is writing them, she is facing that aspect head-on with her daughter Emery. As a result, she, and her followers process through the difficult topics together.
Yay for processing and dealing with those tricky emotions instead of shoving them deeper inside! And in dispelling the shame that is often associated with feeling wrong in being human.
In our conversation, we unpacked three of her—and her followers’—favorites:
- I am not stronger than you.
- What happens when it stops being cute?
- I wish your pity were replaced with empathy.
In all honesty, it was super difficult to pick only three out of so many awesome ones, but these proved to be great ones to use for the episode.
The first: I am not stronger than you.
I have a complicated relationship with this one; I often feel so incredibly weak while going through an issue relating to Kimball head-on. But after I have some time and space, I look back at things we’ve gotten through and feel so incredibly strong for surviving—if barely.
To this, Anna reassured me:
“Yes, we are absolutely strong in every sense of the word. However, we struggle. You can be strong and struggle every single day.”
What gets her, she told me, is when people say they could never do what she does as a special-needs mom. It incorrectly assumes we have some super-human strength and are equipped to handle the extra stress and overwhelm that comes along with the territory of medically-complex parenting. Oh, how I wish this were true! But of course, it is not. Just like every other human would, we struggle hardcore. And that is completely ok. Anna admitted,
“There are days that I just want to wave a white flag and say I'm done. Just take me.”
Another hurtful part of this sentiment is that it separates us further still from the world of our peers. Assuming or declaring that we are of a different breed and caliber of strength is another way to reassure themselves it could happen to someone like us, but surely not to them.
The second confession we chatted about was: What happens when it stops being cute?
At the time Anna wrote this confession, Emery was going through her first IEP (individualized education plan). All the professionals in the meeting kept commenting on how cute Emery is. And while she totally is adorable, it made Anna worry about the future when the quirky things she does are no longer seen as sociably acceptable. What then?
This one is one of those worries that often gets shoved down deeper instead of brought to light, because it’s a tough one. And what does happen?
After our interview, I really thought about it a lot. Kimball and Emery have different struggles, and yet I have similar fears. Kimball’s abnormally shaped face and nose, his dwarfism causing short stature, his hearing aids—what happens when he’s not an adorable toddler with these things? What happens when he’s a teenager with these differences? They will no longer be muffled and muted by his toddlerhood and innocence. His differences will be front and center. And he will be fully aware of all of it. What then? Will people treat him with the same adoration and kindness?
It hurts my mama-heart to contemplate these painful questions, but it’s something we all face in one form or another and knowing we’re not alone in this is huge.
We concluded the episode with the confession “I wish your pity were replaced with empathy.”
Anna described the contrast between those who display pity and those who show empathy when they see Emery out and about, using her walker and eating via feeding tube; the faces of some fill with sadness at the sight of her and hurry along. And others point out some of the lovely things about Emery. They introduce themselves and talk to her. They educate their children about different ways to walk and eat. The latter are those who display empathy because they decide to join in their world rather than shake their head and pass by.
As Anna put it,
“People need to realize that pity helps no one. Empathy helps both people.”
Imagine the impact empathy has on the attitude of disability in the world.
The response of “I’m sorry” is another form of pity that is often hurtful. That pity overlooks the unique and brilliant things our children bring to our lives and to the world.
And it often feels like a cop-out.
A quick, “I’m sorry” is a sure way to weasel out of an uncomfortable conversation of struggle and pain. It is so meaningful when that “sorry” is replaced with a sincere, “Tell me more about that.”
Again, its that desire to come into our world that displays empowering empathy and always trumps pity.
I was so thrilled to have these hard but important conversations with Anna, and they resonated so much with me. They make the world of difference in healing and processing through all that we experience.
I hope we can all come to the same conclusion as Anna did when first creating her confession posts, especially the ones we feel guilty or shameful for feeling:
“I realized I wasn't wrong. I was human.”