To My Parent Friends Who Don’t Have Kids With Special Needs

To my parent friends who don’t have kids with special needs:

I need to tell you a few things as the parent of my now-adult daughter with significant medical needs.

In the beginning of our journey with our daughter’s medical, physical and developmental needs, I felt alone. I didn’t want to hear other mothers talking about their child’s minor illnesses such as ear infections and the inconvenience of their antibiotic treatment. At the time, I was injecting my infant with steroids in an effort to control her hundreds of daily seizures, making daily doctor’s calls, and running to the pharmacy, lab, hospital and early intervention therapies. It angered me that you seemingly only had to
worry about the occasional 10-day course of antibiotics.

Sue and her daughter
Sue and her daughter

I was feeling such anxiety and fear about my baby that I thought nobody else would understand. But somehow along the way, I realized you were feeling the same feelings I was. All of us at some point in time deal with the fear for our children that illnesses bring.  Fear is fear. Twenty-three years later, I am now able to see that while our details are different, emotions about our children are not.

I need to tell you a few more things.

I appreciate your friendship and understanding of my moodiness on days when I don’t see all the good stuff. Those are the days your smiles and stories about what is happening in your life help me more than you could ever know. It helps me feel like myself.

I appreciate the admiration I see in your eyes when I speak of some of my experiences with my daughter. I hope you see the admiration in mine when you share your experiences you
face with your family.  We’re not living the same details, but the emotions are the same, and really, we are all pretty amazing!

I appreciate how you get outraged when someone treats my daughter or our family unfairly. Thank you for offering a helping hand, whether it’s an offer to pick up an item I forgot grocery shopping or driving me to an appointment when I’m feeling ill.  Offering to be my emergency back-up for meeting the bus if I get tied up on an errand is more valuable than you probably realize. Even if I decline the offer, it’s comforting to know help is available if I need it.

When we are messaging each other and crying together over emotions that rise up out of the blue, you are my lifeline. You’re helping me see that I am not alone, and we may not have the same details, but we have the same feelings and fears for our kids — even when those kids are in their 20s.

My friends, you are simply making this life I lead easier, and that is more valuable than you know.

Find this story helpful? Share it with someone you care about.

Related to Other

Mom Has Heartfelt Response to Kids Bullying Her Son With Special Needs

When MaryAnn Parisi realized her 11-year-old son Michael was being bullied, she was furious. Instead of confronting the bullies’ parents, she reported the incident to the school and wrote a heartfelt Facebook message to the kids picking on her son. Parisi wanted to make the students bullying Michael aware of his history, so she described some of the challenges he’s faced since he [...]

New Jersey Just Made a Potentially Life-Saving Move for People With Disabilities

On Monday, New Jersey passed a law to create an alert system for missing persons with mental, intellectual or developmental disabilities. The new law (A-4270), which gained unanimous approval from both houses of the state’s Legislature, requires the attorney general to establish the “MVP (missing vulnerable person) Emergency Alert System.” Similar to the state’s Amber Alert system, [...]

When You’re Afraid Accepting Your Chronic Illness Is ‘Giving Up’

For the longest time, I was hesitant to use the phrase “chronic illness” to describe the steady decline in my body’s ability to function “normally.” I was hesitant because I thought if I told people I was chronically ill, they would think I had given up. Or more importantly, I would think I had given up. I thought accepting my [...]

My Top 10 Resolutions as a Special Needs Mom

While it’s tempting to say “I’m not the type who makes New Year’s resolutions,” as a parent of a child with special needs, I find that I’m resolving — almost daily — to do more to help my son. Though I might have the best intentions of working with him on language or handwriting, the [...]