Nothing ever really turns out how we expect it. When women picture what it will be like to become a mother, rarely do we envision raising a child with a disability. That’s what happens to other people. Those are the parents we see in the ads for the Special Olympics. Those are the crying women interviewed for the inspirational stories we see on the news.
Then suddenly, everything you thought you knew about being a mother falls to pieces and you rebuild this new, better version of what love and parenting is. We become our own version of “that” mother.
“As a mother of children with disabilities,” says Rebecca Stickler, Regional Network Coordinator for the Center for Family Involvement (CFI), “you just do what has to be done. There is no time to stop and think about it. You are always on alert and stick with the plan. We have to be flexible with life when things don’t go as planned but we get used to it over time and sometimes we don’t. Sometimes we do break down, and that’s okay as long as we don’t stay there because our children are banging on the door that separates us from them.”
Parenthood is hard. As much joy as it can bring, there are days, weeks, months that feel relentless. Behavioral issues, regression, setbacks, IEP meetings, health concerns, money woes. It does not stop. As much as we love our children and wouldn’t change a thing about them, there are things we wish we could change about the world around them.
While fighting to change this world though, sometimes we just need to get through the day. So how do the mothers of CFI do that?
Blind/Vision Impaired Specialist Dawn Peifer-Snow adheres to the “Just Say No” philosophy. “Family gets upset sometimes, friends get disappointed, sometimes even work has to wait, so that I can maintain my mental health and care for my family. Sometimes even the kids have to wait while I throw myself into a painting or yard work project so that I can allow my brain to relax. I am an introvert so alone/down time is how I re-energize.”
Dana Yarbrough is the CFI’s Director as well as its Community Supports Specialist. Her daughter is 23 years old. “If I had a looking glass and could see back over the years of being Brooke’s mother, I would cringe at all of the mistakes I made, laugh at expected and unexpected joy she brought, and cry at the lot that was given to her in this life.” As for what gets her through the tough days, “… the parents who supported me along the way that had ‘walked in my shoes,’ the walks with my dog who soothed my emotions, and the thousands of books on my Kindle that helped me escape for hours at a time.”
“Some days I get very overwhelmed with the demands of being a mom. It can feel as though I am suffocating from the intense pressure to be everything for everyone,” Co-Director of the CFI and Family to Family Network of Virginia Nickie Brandenburger tells us. “On those days, I plug my headphones into my cell phone and listen to a good podcast or an audiobook. Even though I might be cleaning the toilets, making dinner or sweeping, I steal those moments as ‘me time’ and escape, if only for a few minutes, while I maintain my responsibilities as a mom.”
Valerie Abbott is a Learning Community Coordinator with the CFI who helps families dealing with a deaf or hard of hearing diagnosis. She says, “Spending time with other mothers always energizes me and helps me realize that parenting perfection is not the goal. Being a mother is both deeply challenging and deeply rewarding, and raising a child with a disability adds another layer onto those challenges and rewards. But, talking with other mothers and sharing our stories (even if they are vastly different) helps me realize I am doing the best I can – that we all are doing the best we can.”
Irene Schmalz is the CFI’s Deaf/Hard of Hearing Specialist. She says, “The older I get – the more challenging it becomes for me to be a Mom especially with a significant hearing loss. When I was younger, missing out on conversations did not bother me; but now I want to hear what my family members have to say and I am missing out. I can’t help wonder if a cochlear implant would really make a difference? It gives me joy to see that my grandkids have accepted my hearing loss (or at least I hope so!). How do I know? One granddaughter made a hearing aid with pipe cleaners and placed it on her ear to hear. The other granddaughter pointed to my dresser drawer to get my hearing aids so I could hear what she has to say!”
The CFI’s Videographer and Social Media Specialist Jill Rose shared some wisdom passed down by her grandmother, “What I get from being a mom is a constant reminder that these years really do go by fast and I need to be present and in the moment with my kids so I don’t completely miss their childhood. My grandmother had three kids and when she was in her 90’s she told me her biggest regret in life was not playing with her kids. She said that dishes and laundry always seemed to get in the way of her sitting down and playing with them. I was still single at the time but took this to heart. Now as a mom I try my best keep this in mind every single day and to do my best to play with them. Don’t just watch my son play basketball, but play basketball with him. Don’t just watch my daughter brush her dolls hair but sit down and ask her to brush my hair. It’s so hard to remember to do this!!! Because there truly are dishes and laundry. But I am determined to not wake up at the age of 90 and have this as a huge regret.”