The day that my niece Dylan was diagnosed with DIPG, by far one of the worst cancers out there, is the worst day of my life thus far. I can vividly remember those days in August 2018. I had an almost three-month-old and was easing back to work from maternity leave. I also had a one-year-old and a just-turned five-year-old at home. My husband Mark was around to help (thank goodness!) most days that summer since he was working for a school district at that time.
When we got word of Dylan’s diagnosis, it was exactly like a movie scene where everything freezes. I felt completely paralyzed. Unfortunately, the world around me didn’t freeze. And my kids, who had no idea what was going on (with the two youngest of course too little to comprehend), were their normal, demanding selves.
To be completely honest, in those first days after D’s diagnosis, I didn’t feel an overwhelming feeling of gratitude and a “hug your kids tight and be thankful” kind of feeling. I’m nervous to admit this, but I found myself getting irritated more easily with them and losing patience quickly. “How can you act like this when Dylan is facing this terrible thing?” was my thought. I realize that’s irrational, as they had no clue and they are too little to have much empathy, but I was so wrapped up in my own grief that I could barely tend to their needs.
Nevertheless, Mark and I found a way to keep things afloat at home. I think we went on parenting autopilot at that point, doing what needed to be done, but both being completely lost in our thoughts and emotions. I recall being on my phone, either calling or texting family members constantly. With what seemed like never-ending tears flowing down my face, I gave up wearing mascara. I distinctly remember Penny saying, “your voice sounds funny” because of the way my tone changed as I cried. While I did try to hide most of the crying and sadness at that point (we hadn’t yet decided when or what we were going to tell Penny), of course the kids picked up on our emotions.
Penny was doing a horse camp that week, and there was a show on the last day for parents to attend. Thank goodness for sunglasses as the uncontrollable crying continued. I watched the kids riding horses and performing their vaulting routines (basically gymnastics moves while riding a horse) and couldn’t stop thinking of all the things Dylan wasn’t going to be able to do if her time was cut short.
As time went on and we moved out of the fog of diagnosis, our parenting has changed in some ways, but not all. We certainly view life through a different lens now, and these are a few areas where we have made changes.
1. Loosen the grip on arbitrary rules.
Growing up, we (Casey, Jamie, and I) were allowed to get our ears pierced when we turned ten. Penny asked me long ago when she could get her ears pierced and so I automatically answered, “Ten.” Well, Dylan got her ears pierced recently and so all I heard was, “When am I going to get my ears pierced? Dylan got hers! I want my ears pierced too!” Mark and I talked and decided that ten was just an arbitrary distinction based on my upbringing, so we let Penny get her ears pierced. Mark and I are continuing to reexamine other rules we have and look at the reasoning behind the rules.
2. Embrace their uniqueness and let the little things go.
Like most first-time moms, I liked to pick out cute outfits for Penny to wear, style her hair, and make sure she was an adorable, put-together looking baby. When Penny was three and I had Oscar, my priority changed to her dressing herself and saving me that time. I would still often guide her toward certain outfits or comment if something didn’t match and try to get her to change. Now, I am all about her expressing her individual style. She often likes to leave her long, wavy hair loose, despite a good amount of frizz and flyaways in all directions. Half the time she doesn’t wear shoes and has informed me she is a “girl of the wild.” Rather than seeing the mismatched clothes or the pants that are nearly capris now because they are too short, I just see a creative spirit, and I celebrate this.
3. Try to avoid parenting out of fear.
This is a tough one for me. I think it was Casey that introduced me to the saying that “Being a mother is like having a piece of your heart on the outside of your body.” It is so true. Plus, I am an anxious person by nature, so worry and fear are woven into my personality. Trying not to yell “Be careful!” a million times a day is a struggle for me because my mind jumps to worst-case scenarios for everything. My internal dialogue goes something like this: Oh no, Archer is jumping on the couch with Penny and Oscar. They are going to knock him down and he will hit his head and probably develop a brain bleed! Okay, slightly exaggerated, but this is genuinely how I think as I watch my kids do activities.
When Dylan was diagnosed, I felt terrible as Casey and Jeff wracked their brains wondering how they could have prevented it — or what they may have done to cause it. Was it the Wi-Fi and technology in the house? Did they feed her the right things? Was it that time she fell and hit her head when she was a toddler? Of course, we all know they did nothing to cause it. DIPG is a random thing, and they won the worst lottery possible.
Like any parent, I remain scared of something happening to my child. But the difference is now I am making a conscious effort to not let it hold me, or them, back. I am trying to say yes to the risky activities and intervening less as they play rough. Sure, I take precautions, but I want us all to live fully. Something could hit us that is 100% out of our control, as in Dylan’s case, and no amount of worrying about it ahead of time will ease the pain if it happens.
4. Don’t wait – carpe diem!
We can do that when you get older. You have your whole life ahead of you to [insert activity]! There is plenty of time for that.
As a sleep-deprived parent with little kids, these were often my thoughts as I would answer my kids’ requests. Probably the biggest change in my parenting since Dylan’s diagnosis is knowing that the future is no longer a given. I am more inclined now to try to be a “yes mom” instead of the mom who always says no. Not all the time of course or giving in to unreasonable demands, but surprising them sometimes by saying, “Why yes, you can pick out a pack of gum in line at the grocery store!” or “Yes, go jump in that puddle!”
5. Stop and smell the roses. Or look at the slugs, whatever the case may be!
I was recently listening to an audiobook, The Gifts of Imperfection, on my quest to complete my “20 for 2020″ list. The wise author Brené Brown wrote about interviews with people who had experienced tremendous loss. She stated, “The memories that they held most sacred were the ordinary, everyday moments. It was clear that their most precious memories were forged from a collection of ordinary moments, and their hope for others is that they would stop long enough to be grateful for those moments and the joy they bring.”
We live in a world where so often we are dreaming of that next vacation or waiting for the weekend, or for me, just trying to make it to kids’ bedtimes. But this quote, combined with Dylan’s battle, resonated with me. Now I’m trying to embrace the everyday, even when it is boring and repetitive. For example, I dread packing my kids’ lunches every night. It’s a monotonous and usually thankless chore, but I would sure miss those lunch bags if they weren’t around. I’ve heard from plenty of parents who have gone before me and tell me someday I will ache for these days. And I’m keenly aware that there are countless parents who would give anything to have a lunch bag to pack for their lost child.
I used to think I would go on a walk with my kids to get some exercise. We would get about ten steps in and I’d quickly realize there was going to be no exercise and the walk would probably take us about 0.1 miles if we were lucky. I’ve reframed my expectations for our adventures and slowed down to appreciate all the little things they do, even if I’m not as inspired about the ant/leaf/blade of grass/dog poop as they are.
6. Are we happy?
While Mark and I have never been ones to worry about whether our kids will someday ace the SATs or go to an Ivy League college, we now care even less about achievements. The question we ask is, are we all happy? And, is this working? I don’t care if Oscar is going to be a star basketball player or an orthopedic surgeon someday. My hope is that he finds meaningful activities and a way to contribute that gives him fulfillment and happiness. The status quo and “keeping up with the Joneses” matter less and less to us.
Now, if you’re wondering about the things that haven’t changed in my parenting? I get frustrated and lose my patience with my children. I vent and complain to my sisters and others about the kids (let me tell you, it says a lot about Casey’s character when she can listen to and empathize with those complaints, which I realize are truly petty with what she is facing). I deny a lot of my kids’ requests. I sometimes completely lose my tolerance and snap at them. I apologize to them. I make them do their chores even when they complain.
But most importantly, I tell them I love them a lot. Because I want them to be completely certain of that when tomorrows are never a given.
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