Advocating for your child is exhausting.
I am not talking about meeting with a teacher about make-up assignments, or an email sent to the baseball coach because your kid wasn’t playing enough. I am referring to the kind of advocacy that relies on your every thought and breath to navigate each next step for your child since the day a life-changing event happens. The moment when you knew nothing would be the same ever again. And it won’t.
I measure, weigh and analyze each decision for my son Connor’s care with quality of life as the driving force. Connor has special needs as a result of his stroke and cancer treatment as a baby. I foolishly thought things would get easier as he grows up. Perhaps he would fall less often because he would be stronger and more able to balance his stroke-damaged body. True, he does fall less, but now he falls when he is having a seizure.
I thought it will be so nice to have him sleep through the night in a big boy bed as he got further away from his busy, hard-to-sit-still toddler years. Nope - he now begs to sleep on the couch because that is where he says he feels best. My husband and I use a camera and monitor to hear and see that he is safe throughout the night wherever he sleeps or wants alone time in his room. Remember those baby-in-their-crib years, when you would check on your child every time you woke, turned over, thought about them or got up to use the bathroom? That’s where we are at with our 11-year-old boy, 24 hours a day.
It will never end - the daily changing needs, the guessing, the uncertainty. The closing your eyes and pointing to that answer and hoping it is the best one. I feel insecure on how to guide him spiritually, physically and emotionally every day.
Every morning I wake with as much hope as I can muster – truthfully, some days are harder than others. The racing thoughts in my head become scrambled. When will he have a seizure? Will he be safe? What will he want to do that he shouldn’t for safety, what else will make him stand out from his peers in a way that makes him feel different? Will he feel happy?
The last time we had a lunch date, Connor was making his choice of which fountain pop to have, which was a treat in itself. I reminded him quietly that caffeine isn’t good for his growing body and can make his seizures worse with suggestions of slightly better choices. His responded by looking at up at the ceiling and yelling, “God, why did you give me these seizures!” I caved. Pick your battles, right?
A few weekends ago, we were watching his big sister play in a volleyball tournament and he asked to go outside on the school playground with other siblings. It is not a simple, “Sure buddy come back in 15 minutes.” It is asking parents and their kids if they can watch for seizures, explaining what they look like and how to help him if he has one. It is making sure that they even want the responsibility of that caretaking job. It is trying to focus on cheering for my daughter instead of wondering every second if he is okay.
Connor has taught to me to choose carefully when mentioning seizures as the reason he can or can’t do something. I have learned to show him “how” he can accomplish some of what he is striving for with the disabilities that he has. I don’t want to feed into the resentment of his current struggles. He is sick and tired of it too, and I am cautiously paying attention to his growing self-advocacy and encouraging it. He is craving freedom and that is a good thing, but not easy to navigate. He is getting older and realizes that no one else’s mom is hovering.
So how do I do it? How do I let him go and keep him safe at the same time? How do I get up and face the day with hope and a hard reality of how the day will go? Some days I don’t want to. Some days I want to sleep and pretend that I don’t have to set an alarm to give him his morning meds. Then maybe I won’t have to wake that day to the reminder that he is sick.
Some days, I become resentful of his daily struggles. I am grateful for a husband who carries the load equally with me, truly I am. But there’s a constant burning in my soul to find the best way. The “there has got to be a better way” voice in my head never quiets and has me weary. I pray that the nightmares of me trying to save him, which wake me in a pool of sweat, will please stop. These are my personal battles as Connor’s mom.
So when I feel the emotional waves crashing and my chest tighten, I pause and stare. I watch him. I see the hope he has on his face. I hear his questions that are so smart and insightful. Connor is the answer. The child who brings me the most heartache, anxiety and fear is the one who can show me and convince me he is okay. He shows me that no matter what, things will be okay on earth or in heaven. Caring for Connor is the best and hardest job I could ever have.
P.S. I am hopeful for an amazing retirement package. 🙂
Written by Mindy Dykes, Community Outreach Coordinator
My son was diagnosed at 6 weeks old with a brain tumor. It was massive and required emergency brain surgery and an aggressive plan to treat the remaining cancer cells. Connor made it through surgery, survived chemotherapy and a bone marrow transplant all before he was 7 months old. Now, my husband and I are navigating survivorship late effects, raising his preteen sister and always striving to keep life in balance.