I don’t remember the exact date I woke up and realized that the struggles that came along with a diagnosis for our daughter weren’t temporary, but part of our regular family life. For us that meant daily needles, monitoring lab work, physical therapy, and pain management. It took time to internalize that things weren’t going to return to “normal.” It took wrestling with the question, “How am I supposed to get to all the things I assume you want from me, God, with all this extra stuff?” before I finally understood that the needles, the lab work, the physical therapy weren’t just a distraction from what God wanted me to do. We’ve been living our New Normal for seven years now. Reflecting on our rollercoaster, here’s what I wish I had done sooner on our journey.
#1 Embrace my now.
When I had to give up teaching 2nd grade Family Faith Formation at our parish because our daughter required more care, it didn’t feel like doing God’s work. It felt like leaving God’s work. I had to choose to stop thinking of all the things I could be doing if I weren’t tasked with being my daughter’s caregiver and to internalize that our daughter’s diagnosis wasn’t taking me away from God’s plan for my life, but a calling to greater sacrifice.
#2 Adjust my expectations.
I loved the idea of gardening but didn’t have the time after the diagnosis. Instead I let our friends and family know that we are interested in surplus garden produce since we couldn’t handle a garden anymore. Nowadays my windows are never clean, I serve several easy meals in rotation, and the kids wear whatever they choose to put on themselves. If it doesn’t make life easier, I stop doing it. I would have been so much happier had I let go sooner of the things that weren’t important.
#3 Connect with other families.
“Talking shop” with other families facing a similar diagnosis always energizes me. It’s difficult to discuss feeding tubes, fecal smearing, or wheelchair living with families whose biggest dilemma is seemingly whether to vacation on a cruise, or go to Disneyland. It has been especially comforting to talk to families who have more experience and who have spent more time on the same path. We found community on social media and also connected in real life with some local families.
#4 At the end of the day, write a done list.
Just recently at night I started writing down what I did during the day, and that has helped squelch feelings of being unproductive. Instead of feeling down about not accomplishing what I’d hoped, I force myself to remember the unexpected phone call to insurance, the message to the nurse, the researching of a new medication. Somehow writing a task down helps me see that it is worthy and important, and it’s particularly satisfying to immediately check it off my list (because it’s already done). I also make sure to write down when I spend quality time with my kids, which short-circuits the self-doubt that comes in the middle of the night when I’m convinced my kids are being neglected because of the time spent doing other necessary things. On the other hand, I can easily see if one of the kids is due for some one-on-one time with me and correct it.
#5 Focus on my prayer life.
Almost two years ago my husband started to spend 30 minutes each day in silent prayer, and I’ve seen a huge positive shift in his outlook, demeanor, and anxiety. I have spent far too long back-burnering authentic self-care, most importantly my faith and prayer life, because everything else is louder. I don’t have brain space for a lot of complicated, deep theological reading, but I did just receive a review copy of the book Prompt Me to Pray which aims to infuse prayer into daily life-- even the hectic, fire-putting-out life of a parent. It was only just published, but I wish I had had this book sooner. Already it has increased my awareness of how I’m praying, inspired a desire to pray more, and offered easy steps to grow closer to God without just becoming another item on my to-do list that I’ll never get to.
Life as a special need parent can be frustrating, isolating, and challenging, but the task is much more bearable when I remember to focus on what helps me best accept the gift. What has helped your family settle into a New Normal? What do you wish you had done sooner on your journey as a parent of a child with special needs?
Alisha Schonhardt is a wife and mother to five. She blogs at 'Sweeping Up Joy' .