The people who will help you survive are other moms of kids with disabilities. They are fighting the same battles and are staying awake at night wondering if they have done enough as a mother for their child—just like you.
I have an incredible husband who is supportive and stands with me through everything, but let's face it … women just have that thing, that one special bond. It's called motherhood.
A mom of a child with special health care needs is often left feeling alone because of all of the demands on her. I often laugh that after 14 years, I could probably have a degree in pharmacology, be a nurse, a respiratory therapist, a detective, every type of therapist that there is, and at times even a doctor.
But the bond of picking up a phone and calling a friend to say, "Hey, why do you think my kid is having seizures the same day your kid is. Could it be because the temperature has just dropped 30 degrees in 3 hours?" That is a special art!
Three of my best friends and I call our group—not the YaYas—but the YoYos.
Our children have different disorders—including cerebral palsy, autism, and Down syndrome—and, of course, all three have seizures. The fourth child has sadly passed away, but we were all there to get through that terrible time together. We live in West Texas, so when we meet up, it is usually over chips, queso, and salsa—because what crisis can't be solved over chips and queso?
We have laughed, we have cried, and many times, we have brainstormed how to make things easier—or just how to get maybe one more hour of sleep a night. That can be a huge thing to a sleep-deprived mother.
We don't always talk on a regular basis, but we all know our friends are only a phone call away. My Yoyos have helped me keep my sanity and take my worries off of my own family while I worry about them and their children. We have discussed sibling and husband issues and how they feel left out. But we know that the mom is the last one to take care of herself.
My advice as a parent of a child with disabilities is: Find your group, find your people. The ones you can laugh with, cry with, or even have a slumber party with—and maybe even drink a glass of wine with.
They will always be there for you because they are going through much of the same frustrations you are. So go find your Yoyos!!!
What happens if traditional respite doesn’t work for us? How do we, as caregivers, still find a way to recharge? Sometimes respite looks very different from one family to another.
Breast milk is liquid gold and everyone is aware of the many benefits it provides babies. There are a lot of moms that either can’t produce any, enough, or maybe their baby cannot tolerate breast milk. These moms are doing the best they can and we need to stop shaming moms for not breast feeding and support each other.