What being a glass child taught me about raising siblings.

Dear younger me,

I understand us now more than I ever have before. I’m no longer frustrated with the choices we made when all we wanted was to be seen. The ache to feel noticed, to feel accepted, to find a place where we could just be ourselves was deep and unrelenting. We looked in some really hard places for those things.

Our choice of friends wasn’t always ideal, but eventually we found some lifelong ones. I’m so incredibly proud of the growth we gained through truly difficult moments. At one point in life, we came to a crossroads-and the road we chose wasn’t the easy one, but it was the one every version of us needed in order to become who we are today.

You weren’t the hard child. You weren’t bad. You did the best you could with the hand you were dealt, and I am so proud of you.

When L was still in the NICU, it was so hard to be fully present with E at home. My mind and heart were in two different places. Feeling that divide deep inside me opened up all the emotions I had carried as a child. The experiences I had as the sibling of a medically complex child came flooding back. My younger self seemed to be yelling at me not to forget her.

At first, I couldn’t tell if the “her” I wasn’t supposed to forget was me-or E. Now I understand it was both.

Sometimes I picture that like this

I have used my experience as a glass child to shape nearly every choice I’ve made as a mother raising two children: one who is medically complex and whose needs require much attention, and the one whose whole world shifted without her understanding-who still needs her parents to see her and be just as aware of her needs as we are of anyone else’s.

I don’t get this right all the time but, I do my best to make sure E gets time not just with me, but with Ryan too. Simple tings seem to mean the absolute world to her. On Saturday, she got to go to the store just her and her dad, and she told him it the best.

When she asks me to do her hair and I have time, I say yes-it’s a sweet moment for us to slow down and talk. She loves snuggle time, just watching a show or reading a book, and that seems to fill her cup more than anything else, so we try to prioritize it. When we’re able to, we also try to make space for the “big things” with just Mom and Dad-like shopping for her first day of school clothes and picking out her backpack.

It’s these small moments that turn out to be the biggest ones for her.

I still miss things sometimes. There are days, weeks, and occasionally even whole months when L’s appointments line up in a perfect storm of busyness-and to E, it feels like L is getting all the things. Lunches on the go. A toy given as a prize for a blood draw. Leaving a mom whose attention is spent in demanding appointments, leaving patience thinner in the afternoons. Those seasons seem the hardest for us.

I’m run down from the physical and mental exhaustion of getting everywhere we need to be while managing a very active three-year-old. E feels like life is unfair because she didn’t get the toy or the special lunch. And there never seems to be enough hours in the day to make up for that.

Those are the moments when the simple things become the big things. A solo store trip and maybe a treat. Bringing a stuffy to school pickup so she knows I was thinking of her that day too. A deep breath. A well-timed hug. A family dinner she picked. It all goes a long way.

I think about younger me in these moments often, wondering what I needed to help me feel seen. I’ve learned that balance isn’t equal attention-it’s intentional connection. While grand gestures are always appreciated, they don’t have to be the standard.

I’ve leaned on a group of moms who are navigating this road too, and they’ve shared some truly beautiful ideas.

Marie shared “We put our daughter in horseback riding lessons. My husband and I make sure to go with her so she has time with both parents. We try to make sure she feels seen and important in our busy schedule.”

Taking something already on the to-do list and turning it into an experience for the non-medical child can be a powerful way to create connection.

Danielle said “Keep them included in all the things. Let them pick the color of the neck tie, have them distract him during cares. Take them to appointments, and everyone gets a treat after…or during.”

In my experience, many pediatric care teams are more than happy to involve siblings. We’ve had doctors teach them how to use a stethoscope on each other-and sometimes even on the doctor. Those moments matter. Bonus, siblings can help entertain each other at the appointment and gives parents the capacity to talk with and hear the doctor.

Janet shared “I have two older children who really struggled with how much our lives changed. I got them into therapy and have tried my best to get our life as close to “normal” as possible. We prioritize their events. It’s not perfect because events get canceled, but at least they know we are trying to prioritize their needs.”

Understanding our limits and being humble enough to recognize an older sibling may need more help navigating this big change is a huge step in this process. We met with one doctor before L had turned one and asked her to tell us what our lives would look like and she responded “let it look how it always has until L ‘tells’ you something needs to change.” Most of the change for us has meant a few extra bags when we travel.

I’ve also listened to episodes of the RareLife podcast and even a TED Talk on this topic, searching for wisdom from those further down the road.

So if you are walking this path too, I want you to know this: awareness matters. As long as you are mindful of your non-complex child and willing to lean into the small everyday moments, it will make a difference in how they feel in the world. No parent is perfect. But we all get to wake up each day and try again-to love more intentionally than we did yesterday.

Here, with you,

Katie