11/09/2026
What an amazing mama..you are truly inspiring and the support you received is amazing.
Thank you for sharing your story and feeding journey.
I would grab a box of tissues before reading this one. 🥺
Via Amanda’s Angels ALS
“Nobody knew if I would be able to breastfeed. My doctors couldn’t find another case like mine.
But I knew I was going to try.
I was 29 when I went to a neurologist hoping to rule out ALS before starting a family. My mom, grandma and other family members had died from it, so deep down, I knew what the answer might be.
Then I found out I was pregnant.
Two weeks later, genetic testing confirmed I had ALS.
In just five months, I went from running races, working in a lab and firefighting to being unable to move anything except my head and depending on a ventilator to breathe.
At 24 weeks pregnant, I was admitted to the hospital. I spent the next four months in the medical ICU.
My doctors didn’t know how my body would handle pregnancy, a C section, or even if I would live long enough to meet my daughter.
But at 39 weeks, our beautiful, healthy little girl was born.
As soon as I was brought back to my room, Peanut was placed on my chest.
And she latched.
She just knew.
The nurses who had cared for me knew how badly I wanted to breastfeed her, and they became determined to make it possible.
They figured out how to position her against my body while I lay in bed. Lactation came to see me every day. My family learned how to position her, latch her and hold her to my breast because I couldn’t do it myself.
It took pillows. Blankets. Extra hands. A whole lot of patience.
But we breastfed.
One of my biggest goals was to freeze as much milk as possible so my daughter could still have my breast milk after I was gone.
Pumping while completely paralyzed wasn’t exactly something there was an instruction manual for.
So we made our own.
Two people would hold the pump flanges against my breasts, and when they filled, the milk was transferred out with a syringe and tiny tube.
And little by little…
I filled the freezer.
Breastfeeding wasn’t easy. I had cracked ni***es, milk blisters, decreased supply and eventually a baby with teeth who couldn’t understand that biting hurt me. Because I couldn’t move or react quickly, by the time I could type that something was wrong, I could already be bleeding.
Eventually, I had to stop nursing directly and exclusively pump.
I delayed pain medication when necessary because producing milk for her mattered that much to me.
I couldn’t change her diaper.
I couldn’t dress her.
I couldn’t pick her up when she cried.
And for a while, that broke me.
During that first month, I worried she wouldn’t even know that I was her mommy. I felt like the only thing I could physically give her was milk.
But slowly, we found our own ways to connect.
We listened to Disney songs together. We played animal sounds on my eye tracking computer. We watched sign language videos. She would sit at the end of my bed and play beside me.
Then something happened.
She started looking for me.
When someone asked, “Where’s Mommy?” she would turn toward me.
She would wave at me.
Point to me.
And every morning when she woke up and saw my face…
She smiled.
She knew.
I was Mommy.
ALS is not the life I pictured for myself. It breaks my heart that I cannot mother her in all the ways I dreamed I would. And it crushes me knowing she may have to grow up without me.
But I know this much.
I grew her.
I fought to meet her.
I nourished her when people weren’t even sure my body could.
And when I could no longer use my arms to hold my daughter…
I still found a way to give her a piece of me.
I will keep pumping until my body decides it is finished.”