Updated: May 10, 2020
A few weeks ago my husband and I had the opportunity to spend a night out with four other couples from our church community. Dinner and grown up conversation- what a gift! As the evening came to an end, one of our friends pushed back from the table and said, “Well, home it is. My manly muscles are needed for bedtime.” A fellow special needs parent with an older (non walking) child, even with a PCA his help is needed at bedtime. This is life as a special needs parent, right? Daily sacrifices that we accept as part of our routine. Oftentimes they become apparent when we try to socialize with other friends and family. The adjustments we make automatically can seem surprising to others.
Recently, however, I’ve been thinking about the little adjustments to my life that even I don’t see on an average day. My seven year old has Doose syndrome, ADHD, and various developmental delays. I’ve noticed that when she is picked up for school three mornings per week the house falls into an almost instant silence. Even our rambunctious two and four year olds seem to understand that the entire atmosphere in the house has changed. Her first day back to school after Christmas vacation, my husband happened to be home and he observed it first hand.
“Everyone is playing so nicely,” he remarked. When she leaves for scheduled overnight visits with a family friend, we always have grand plans for projects to finish and all the things we could get done more efficiently. Instead, we often end up eating food she can’t eat due to her special diet and sitting down reading books and watching TV. It’s like a collective family exhale. I find myself texting with friends I have hardly spoken to (ironically including the one watching my daughter), catching up on Facebook and Instagram, and sleeping. I don’t think I’m sleep deprived until those nights when I can just relax that seizures and insomnia will not interrupt my night. When someone says, “I don’t know how you do it!” and “I could never do what you do!” my thoughts always turn to the obvious. The bag of medicine that goes everywhere we go, the extra appointments, the special diet, translating difficult speech, impulsive behaviors, and more. Those are the things that other people can see. Those are the things that can be quantified on paper to provide extra support through our social worker and support staff. The sleep deprivation, the emotional energy, and constant state of alertness. It’s hard to put a number on those- so much so that over the years I’ve come to just accept them as part of my daily life and no longer find myself noticing them at all most of the time. In the early days of our diagnosis, however, these same things that caused me the most stress.
Now, they are just part of what it means to be a mom to this child. Like knowing that my 14 year old hates the texture of cooked carrots and putting a smaller serving on his plate or offering raw instead. With time, I stopped thinking about getting up for the 10th time in the same night to give more melatonin or turn on another audiobook. I stopped feeling like this was an unfair burden that made me different from other families and started seeing it as just part of the gift of this particular child. It was only then that I could give myself guilt-free permission to let that friend care for my daughter overnight, knowing she was really caring for me. To take that collective exhale and rest my body and mind with a nap and a good book instead of rushing to finish a thousand things on my to-do list, and to let the rest of my family do the same. The more I leaned into the gift of this rest, the more I realized that I could also lean into it spiritually. I started intentionally scheduling respite around events such as a good friend’s long-awaited coming home into our Catholic faith. I made it a habit to arrange drop offs and pick ups around daily mass or confession times. The extra work of finding ways to step away seemed impossible at first- be it a night with friends, a weekend of respite care, or a partial day of school (when my other children are fully homeschooled). Learning to trust others to care for my child for even short periods of time was excruciatingly difficult- not to mention the work it took to teach them what they needed to care for her. Initially, I felt guilty that I was leaving her with less of me. Shouldn’t I give her everything? Isn’t that what God asked when he made me her mother? I don’t routinely send my other kids away for a whole weekend or even to school! When I was honest with myself, however, I realized that the only way to give her my everything was to sometimes give her what appeared on the surface to be less. Preparing Lucie for her life is going to look a lot different than it does for my other children- I can’t expect that parenting should look the same.
Heidi is a country living Catholic mama from Southeast Minnesota. She and her husband homeschool and raise seven living children on 8 acres of grass and mud puddles (plus a house). You can read her blog at www.workandplaydaybyday.com where this post originally appeared.