Letting Go When It’s Hard
I’ve rarely felt as helpless as I did this week when Ellie announced she was going to the Emergency Room.
Even if I jumped in the car immediately to embark on the three-hour drive, I couldn’t get there in time to sit with her during triage, to help her ask for her needs, to hold her hand as a nurse inserted an IV line.
Ellie was suffering a severe reaction to a new medication for her chronic health issues. Instead of helping her feel better, it caused such severe nausea and physical pain she hadn’t been able to eat or sleep in twenty-four hours. She could barely drink water. Throughout the night, she had texted me, terrified and anguished. Her doctor sent her to the ER to get IV fluids.
Thankfully, Ellie had only needed to visit the ER twice in her lifetime. This didn’t give me confidence that she would manage this well on her own. What if she couldn’t advocate effectively for herself? If her anxiety took control of her, what would happen? What if her frustration with doctors hit a boiling point without me there to calm her down?
But the biggest question hung over my head like a cloud: what does it look like to parent my sick teenager from afar? I don’t have a playbook for this one.
The Challenge of Letting Go
Months ago, my colleague’s 18-year-old daughter contracted COVID and begged him to pick her up from college. She longed for home-cooked meals, the comfort of her bed, the companionship of her parents. I saw my colleague, who has a close relationship with his daughter, wrestle with the decision. The eight hour round trip drive felt daunting, as well as the fact that he would probably end up contracting her virus. But he wanted to support her.
Eventually, he told his daughter no. He would provide emotional support from afar, but she could find resources on campus to help her heal. Friends could bring her meals and medicine, she could sleep all day in her dorm room. She would be okay.
When I heard his story, I wondered what I would do in his shoes. Maybe his daughter was ready for that level of independence, but should I have different expectations of my daughter because of her propensity towards depression and anxiety? I still carry the fingerprints of Ellie’s treatment center in my mind, which trained me to help her heal by providing constant supervision for months until she stabilized.
But I’ve also wrestled with the opposite question. If we don’t empower our kids to solve their own challenges, how will they ever outgrow their dependence on us? I wrote last week about how failure deprivation can actually hurt kids’ ability to develop resilience. It’s easier for me to embrace that mentality for my neurotypical kids.
With my neurodiverse kid, who has always been more tender, it’s much harder for me to trust that it’s beneficial for her to make mistakes and face setbacks. The specter of depression, anxiety and eating disorder is always lurking in the background, threatening to come back if life gets too hard. Perhaps I am more paranoid about this than she is.
On good days, I choose to believe that Ellie’s recovery is a powerful warrior, ready to meet those ghosts if they emerge. Her support team is her army, helping her take them down as they attack her. Every challenge that she faces has the potential to strengthen her. I want to focus on her strength, rather than her many scars from previous falls.
Sitting in the Tension
“I don’t know why God is allowing Ellie to suffer like this,” I said to my spiritual director, Evelyn.
We sat in silence. I watched Evelyn’s candle flicker, the one she always lights to remind us of God’s presence. I thought about the rollercoaster ride of Ellie’s health challenges over the past 18 months, since COVID unearthed a constellation of chronic debilitating conditions. As if Ellie didn’t have enough to deal with. While I’d experienced many moments of God’s love and miracles in the past year, it also felt confusing to understand how my child’s chronic illness fits into the life of faith.
“Have you asked God that question?” Evelyn asked gently.
It hadn’t occurred to me to do so.
All of my prayers for Ellie are the most basic: “Please heal her, God.” I’m still trying to fix her, or find someone who can fix her, rather than sitting with the pain of how hard it is to see her struggle.
When I reflect on Ellie’s journey, I feel an agonizing weight. Each time I’ve seen her lately, she has lost more weight because of her persistent GI issues. She seems more tired, more limited, and more frustrated with her health.
But if I turn Ellie’s story over, I see a different view. Over the past ten weeks, Ellie has blown way past our expectations of what a disabled teen is capable of. We wondered if she would make it as a transfer student at a large, academically rigorous university, after withdrawing from her first (dream) college last fall. But despite her health struggles, she’s shown unflagging determination to succeed at this new school. Last I heard, she’s earning an A+ in her English class and decent grades in others. What impresses me more is that she’s found belonging and friendship in two campus communities, which is no small feat for a kid who has faced social challenges her entire life. She just signed a lease to live in an apartment with a group of girls next year.
Ellie tells me story after story of how her peers have shown her support and encouragement in the face of her disabilities, rather than the disgust or distance she feared. When other students see her using her walker or a cane, they treat her with kindness and offer to help. If she is too sick to go out, her friends encourage her to practice self-care. One friend agreed to move their study session to FaceTime when Ellie felt too weak to leave her room. Ellie’s face glows as she relates these stories of such an inclusive, supportive environment, a place where she can be herself. It’s a stark contrast to the ableism and discrimination of disabled folks I’ve heard about.
It’s hard to imagine a satisfying answer to that “why” question, but I am overwhelmed with gratitude by the ways Ellie is being taken care of in her new community. Maybe that’s the answer I really need.
The Invitation to Trust
I’ve never forgotten this advice about parenting college students.
When they are struggling, rather than giving advice, it’s best to ask two questions to enable them in problem-solving.
“How do you think you could solve this problem? Who on campus could help you?”
One of our best decisions this summer was to find a new doctor who was both trained in treating Ellie’s health conditions and consistently available. Although there’s an extra cost involved, it means that Ellie has a medical professional that she can consult to find solutions to her health problems, without us.
As Ellie prepared to go to the hospital, I asked her if she wanted support. She agreed that having one of my colleagues, who lives in the community, would be helpful. Even though I felt torn about asking others to fill my shoes, I was so grateful when Marilyn said yes.
I imagined Marilyn and Ellie entering the hospital together, sitting in a small curtained room. I could see Ellie laughing as Marilyn told stories about her toddler son’s latest escapade. I saw Ellie talking confidently with doctors while Marilyn supported her.
I desperately wanted to be there. Maybe I would cancel the meetings on my work calendar and convince my husband to delay his out-of-town trip. Someone else could host the Halloween party for my other two kids. I had just returned from visiting Ellie this weekend, but I could repack my bags. Isn’t that what good moms do? They hurry to their sick kid’s bedside and ensure that everything is taken care of.
Sitting on the couch, I prayed. I reached out to friends for support. Tears fell from my eyes. I eagerly awaited every text from Ellie and Marilyn, and I sent emojis in reply.
Then I picked myself up and started my work day. Because I knew deep down that Ellie was in excellent hands. She had found her solution, with a bit of our advice and a lot of her own self-advocacy in partnership with her doctor. Her support network had carried her through. She needed me as her mom, but the way she needed me was changing.
Three hours later, she texted with hopeful news. She was already back in her dorm room. The IV fluids had restored her. Food and sleep felt possible again. She said she was so thankful. We all breathed a sigh of relief.
Of course, Ellie still faces daunting health challenges, as we search for the right medications. But this week, she learned she could make it through a painful, scary health challenge, advocate effectively for herself, and come out the other side, all on her own.
Parenting emerging adults can feel overwhelming. It’s even more complex when they struggle with mental or physical health issues. It often feels like a confusing trail of landmines. But it’s exhilarating when we see our teens take steps forward to discover their own path, to create their own community, to learn that they can trust themselves to make wise decisions.
I’d love to learn from you. When have you faced a challenge with a teen, especially when you had to trust others to take care of them? What have you learned about when and how to let go with kids or grandkids? What have you learned about advocating for yourself?
Grateful for your companionship on the journey,
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Wow. Thanks for sharing this. I used to tutor a college student who had ADHD and dyslexia. I would often coach her on solving problems that would come up and how she could find resources at her school or from the different counselors she was seeing. Often, her mother would want to rush in and "rescue" her. Since I'm not a mom I told her mother that I could only treat her daughter like the adult I perceive her to be. Over time the daughter learned some valuable self advocacy skills that helped her with following a career path and getting a job she enjoyed.
I am completely in awe of your daughter's support system. She must be a sweetheart to have teen and young adult friends treat her with such kindness. If she wasn't pleasant to be around, I don't think her friends would be so eager to come to her aid. Ellie must have a beautiful heart.