A Letter to My Past Self: A Mother’s Reflection

Dear past self,

You’ve been through some really hard things. Some so profound that you felt like you were watching yourself from outside your body. This happened on February 3, 2018.

You were a scared first-time mom, being rushed in for an emergency C-section. Next thing you remember, you were sitting next to my impossibly small baby who had machines breathing for him as he was being kept warm in a plastic incubator. It was your son.

He was born at 29 weeks and two days and weighed less than two pounds.

Two and a half hours later, you got to meet your son for the first time. They wheeled your bed up to his bedside. Your incision screamed as you leaned over to try and look at your tiny baby. You could barely see him, and you weren’t allowed to hold him or touch anything besides his feet. He looked like a wrinkly little old man. Skin and bones.

The days marched on. You had to go home and leave your baby at the hospital. You cried more than you’d ever cried in your life. You felt guilty and helpless. For nearly two weeks, you spent all day at the hospital, and all you could do was peer in at your son through the plastic porthole on the side of his incubator and touch his feet. Watching him as he struggled to breathe, his little lungs and body working so hard. You were terrified but starting to feel a tiny bit hopeful.

This pattern continued for more than two and a half months. On day eight, you finally got to hold your baby for the first time. It took your breath away. Slowly, he grew bigger. Got stronger. Made progress. Finally, on April 12, 2018, your warrior baby was able to go home. He just had to bring his oxygen tubes and tanks with him. After a few weeks at home, you found yourself drowning in trauma triggers as your brain finally relaxed enough to try and process everything you’d just gone through. You started therapy (with a therapist you still see every two weeks). It was so good for you.

Your son was also working with therapists who were sent by the state after you came home because of his low birth weight. He was never able to breastfeed, so you exclusively pumped for him for ten months. You fed him a little bit at a time because of his reflux. If you weren’t feeding, you were pumping. If you weren’t pumping, you were cleaning bottles and pump parts. And by the time you were done with that, it was time to feed him again.

You forgot to take care of yourself.

He was growing slowly and was behind on nearly every milestone. You chalked it up to prematurity, but other things started to stand out. He struggled with textures. Eating was a daily battle. He was repeating sounds over and over and leading you by the hand. And sleep was hard to come by. When you set him down, he’d cry so hard, he’d make himself sick. It tore your heart out of your chest. In October 2018, when your son was ten months old, you accepted a new full-time management job at an exciting company and started reclaiming your career. It was fulfilling to remember that you’re great at your job and to feel valuable inside and outside the home, but it was a lot.

In January 2020, you found out you were pregnant. You were participating in a clinical trial that required you to take medicine off-label to try and advance your pregnancy further than it got the first time. It was an immunosuppressant. A month into your pregnancy, you started to hear the word COVID—and a few short weeks later, everyone was in a lockdown. After your early birth and NICU experience with your son, you were now navigating your second high-risk pregnancy alone. No one could celebrate your baby bump or come with you to appointments—and despite being high risk, doctors reduced the frequency of your appointments to keep you home. It was an incredibly stressful time. But your baby made it safely to 37 weeks (the most pregnant you’d ever been), and her birth—a scheduled C-section—was so healing.

You thought you had made it out the other side of this crazy pregnancy unscathed, but you thought wrong. COVID had followed you and your husband home from the hospital even though you were only there for 24 hours. Your husband got very sick, and you took care of your newborn and very confused, agitated, non-verbal autistic toddler alone for nearly a week with a fresh C-section scar. It was unbelievably hard and you were very scared—but you did it.

Your son continued to make strides (literally). He started walking a week before his second birthday but by two and a half, was still completely nonverbal. He didn’t have a voice and was racing toward developmental preschool age. The thought of sending him into a school—a few hours a day, a few times a week—knowing he wouldn’t be able to tell you how his day was, what he learned, or if anything had gone wrong was terrifying—but you knew you had to consider it for his sake.

When your daughter was a few months old, you were struggling to ‘balance’ a demanding, senior-level job with providing the right support for your son and caring for a newborn during a global pandemic (can’t imagine why?). Your children, especially your son, needed more of you. So, you left your full-time job at a critical moment in your career and took on freelance work so you could be there for your kids.

After a few weeks at home full-time, you found yourself at another impasse.  Your son had made it clear he was always going to do things in his own time and had grown in so many ways. You were doing your best to support him, but feeding was still a battle, meltdowns were frequent and difficult to navigate, and the days were long and challenging.

You were working with him one-on-one each day, trying to help him communicate and feel more comfortable in his skin. He was bright and curious but got frustrated very quickly and would scream for an hour or more. He would hit, kick, and scratch you. It broke your heart.

You needed help.

So, you did what you always do. You started reading, researching, and looking for answers. Lots of similar words kept coming up. Hand leading. Echolalia. Meltdowns. They were all associated with autism. The more you read, the more sure you were that you were dealing with more than a global delay due to prematurity.

He was tested and diagnosed. Thus began your journey of learning each other all over again.

Finally being able to understand what things were challenging for your son made it so much easier for you to meet him where he was and support him as best you could. You started working with speech therapists. Occupational therapists. Feeding therapists. You respected his boundaries and made sure he was comfortable and that he knew you and his dad always had his back. You learned about all the resources that were available and started to put things in motion. You advocated for him fiercely, something you continue to do today. You continued to freelance so you could focus on him during the day and work at night.

Six years later, almost to the day you’re here, thinking back on this journey and writing a letter to your past self. In 2022, you took on a new full-time senior management position and you love it. You have a great team and work at a great company. In time, you and your son learned how to show up for each other. You’re a safe space for him. You’ve both been through a lot, and you grow together every day. You’re so grateful, and you’ve developed a beautiful relationship. You continue to be inspired and amazed by his tenacity. You have been from the moment your pregnancy with him went sideways. He’s taught you many lessons about perseverance, patience, and understanding.

You have a lot more compassion for yourself, too. You were adrift in a storm, looking for a life raft. You had a lot of things to process and unpack. But you’re doing okay.

Most importantly, you help others. You turned darkness into light.

You and your son are deeply connected to the NICU he was in and you support the families who are there now on a regular basis. You also moderate virtual NICU support groups and give other parents who are new to that world the life raft you were searching for. These last few years, you’ve built up an incredible network of parents of children with autism. You ask each other questions and support each other on tough days.

You’ve also done a lot of work on yourself. You lost relationships when you were going through all the things because you didn’t have the capacity to sustain them—but you’re working on building that back up now. You’ve also processed a lot of the guilt, pain, and trauma you faced. That was hard, uncomfortable work—but it made you feel so much lighter.

Today, you walk hand-in-hand with your smart, funny, intelligent six-year-old son and his adorable three-year-old sister. On a daily basis, you do everything in your power to make sure they have every opportunity to live a wonderful life.