We caught up with the brilliant and insightful Allyssa Meyerhofer a few weeks ago and have shared our conversation below.

Alright, Allyssa thanks for taking the time to share your stories and insights with us today. We’d love to hear about a project that you’ve worked on that’s meant a lot to you.

My daughter has Trisomy 9p. As a special needs parent you can feel very alone. If you search you will find parents going through similar journeys but depending the journey it may be hard to find. It is important to find a community. I got the idea of writing Mama’s Heart when reading another disability book. The idea came to me to create a book that looks like a children’s book but is written to the parent in the child’s voice.

About the book:

How special are we both to get to belong to each other?! Me to you. You to me. You were chosen for this journey to be my mama.

Flawlessly capturing the unconditional love between mother and child, Mama’s Heart: Understanding Love in an Unknown Special Needs World offers a glimpse into the life of a loving family navigating the challenges of raising a special-needs daughter. Told from the perspective of the child, this touching tale expresses gratitude and admiration for her mother, who tirelessly balances her career, family life, and the demands of parenthood. Through her eyes, readers witness the strength, resilience, and unwavering love that bind the mother and daughter.

The story celebrates the power of community and the importance of finding support from others facing similar experiences. With vibrant illustrations and a heartfelt message, Mama’s Heart inspires hope, understanding, and a deeper appreciation for the extraordinary bonds that shape our lives.

Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.

Allyssa Meyerhofer is a nurse at the Mayo Clinic, and she lives in southeastern Minnesota with her husband, who is a farmer, and her three beautiful girls. Following the diagnosis of her youngest daughter, who has trisomy 9p, she has dedicated herself to becoming an advocate in the caregiving and disability world. An incredibly loyal person who’s never met a stranger, she loves to connect and make friends and can be described as a foodie. One of her passions includes helping parents find the resources she wasn’t originally given as well as the space to validate their feelings. Although Allyssa never planned to write a book or become an advocate, she has since found her calling and discovered what she was meant to do.

I am most proud of how I have changed and adapted to become the parent Gabby needs. Navigating Gabby’s paperwork and coordination is a part time job itself. I frequently think about how I got where I am. I know things happen to prepare oneself for the future. For example, I got my master’s in nursing. I still work at the bedside but I know that working full time and going through grad school prepared me to become a working, disability parent. There was a reason I stayed at the bedside when my older children were young. It was because my position is flexible and I can walk away from it at the end of the day. I need to able to walk away from it so I can come home and do my other job – parenting my disabled child alongside my neurotypical kids.

I am also very proud of my older children as they broaden their disability awareness. They accept others and engage with others on a different level. I love that. They are aware that some people need more help with certain things. Right now my kindergarten may recognize someone and say “they have help needs”. Although this may not be politically correct. It melts my heart that she recognizes it and I don’t correct it at this point. Both my girls go out of there way to connect with others with disabilities.

Three things I want parents to know:
1.) Find a Community. You are not alone.
2.) Grief comes in waves.
3.) Figure out how to care for yourself. Time block, babysitters/respite, solo trip, get up before the kids, oil diffuser, medical massage for anxiety, getting the dang fancy coffee. These are things I do. What makes you happy? Do it!

One of my goals is to get the book into hospital child life programs and early intervention programs throughout the country.

Is there mission driving your creative journey?

My mission includes supporting parents. I want to let them know they aren’t alone. I want to encourage them by reading something in a few heartfelt minutes. The book encourages and validates parents on their disability journey. Whether it is taking self care, understanding that productivity doesn’t define you, embracing the team, validating the fear of the unknown, the frustrations, etc.

I want to speak to your heart. I get you. I am you. I want you to feel seen.

For those typical parents reading, understanding what another family is going through. The thoughts that run through a special needs parent’s internal thoughts. Maybe that aren’t discussed – such as who will take on the large responsibility of caring for my child when I am gone? Do I need to pick multiple people? How do I protect them today but for the future? How do I write a letter of intent?

We’d love to hear a story of resilience from your journey.

I lived every feeling in my book. It was mostly written in real time.

I’m a large advocate for figuring out how to get yourself self care. The page that discusses this and is illustrated in front of the cabin was inspired from a solo respite trip I took in the country bluffs close to the Mississippi River.

Self care is extremely important. I need that for myself and my marriage. I am resilience because I am selfish. There is part of a poem called The Special Mother written by Erma Bombeck that speaks to me. “I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.” “But Lord, I don’t think she even believes in you” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness” The angel gasps – “Selfishness? is that a virtue?” God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect.” I shed tears when I come across this part of the poem. I am selfish and it’s ok. It’s building me to be resilient. I take care of myself so I can take care of my family.

I have to plan ahead. I have to make backup and some times backup, backup plans for things. At times I plan 6+ months ahead and announce to the world my plans so they can help me with bringing those plans to fruition.

It’s important to have things to look forward to on your calendar. Figure it out. It’s doable. I also think the little things are important. For example, I love a cute pen and my oil diffusers.

Contact Info:

• Website: https://www.allyssam.com
• Facebook: Unknown Strength on a Road Less Traveled
• Other: https://trisomy.org/trisomy-9-a-parents-story-of-hope-progress-and-support/#/
  This was a podcast I did recently behind my reason why.

Image Credits

Midwest Lifeshots Photography – photo with Allyssa and Book.