No one wants to become a part of the CHD family, but it is one strong, loving community to be thrown into. Anything that we can give back in honor of these superheroes; the children, their caregivers, their medical teams, is a small measure of our gratitude for the amazing healthcare that we receive at Boston Children’s Hospital.

Even when we get to leave the hospitals, we think about the sweet kiddos that remain. It is hard to feel whole when you're watching your child fight for their life. if people didn't do it every day, I'd say it was impossible.

Boston Children's has some of the leading methods in the world related to CHD and Milo's diagnosis specifically. They take on the jobs of supporting and aiding parents and children during the most stressful times of their lives, and they do it with compassion and empathy. 

In honor of Milo's first birthday we would love to contribute something to the facility that supports us, holds us up, and will continue to give Milo and thousands of other children the most innovative care available. 

An Open Letter to our Heart Warrior on his 1st Birthday

Sweet Milo,

Happy birthday to you, our hero.

We didn’t know if we wanted kids. We both love children, but we were scared that it was an irresponsible choice given the state of our global health and politics. But we realized that your potential for love and growth was more important to us. 

When your dad and I talked to the infertility doctor because we wanted a baby we could never have known how much we wanted you. When that test unexpectedly came back positive, we could never have known what it actually meant for us. 

My pregnancy was great, you and I worked well together minus some discomfort. You would keep me up all night with your feet in my ribs, we would wake up and go to work, and at night we would eat Oreos while I obsessively tried to get you moving on video to send to your dad.

I was nervous about what kind of mom I would be. That one day you wouldn’t be comfortable in my belly anymore and you’d be exposed to the harsh world. I spent so much time imagining what you might be like, and I never came close. 

When you’re pregnant you both have this habit of saying “as long as the baby’s healthy”, as if it’s some sort of superstitious ritual that protects your unborn baby as long as you say it out loud to everyone you meet. 

But no birthing class or baby book prepares you for an unhealthy baby. 

When your first child is born you feel this deep, visceral sense of love that is unlike anything else you can possibly experience. This love can be unimaginably painful.  

When you were born I cried because I immediately felt like I couldn’t protect you. I never wanted to let you go. And this was before we knew anything about your little heart. 

After our time in the NICU your tiny body was wheeled into the first of many echocardiograms while your dad and I followed. The staff in the room made playful guesses at what might be wrong with your heart. When the cardiologist put the probe to your chest he stopped smiling and my heart sank. I knew by the look on his face that our lives were about to change forever. 

I’ve spent a lot of time trying to find the right words to explain the emotion that I felt when we learned that your heart wasn’t going to support you as it was. I collapsed to the floor. I lost the baby that I’d spent 9 months living with. I had a new baby, one that I was terrified for, but loved more. More than anything I just wanted to rip my own heart out and give it to you. I no longer had a use for it without you. 

But you didn’t know. Even through heart failure and angioplasties, you just kept fighting. I cried for your suffering and you just did what you had to do to keep going. 

A first birthday seems like a far-off dream in the eyes of heart parents. So many things could happen in that first year. We were told that you had years before intervention, and we were told you had days. Nobody knew what the immediate future held for you. I can’t explain that fear. I can’t explain what it feels like to have regular conversations with your doctor about your prognosis. The fact that this is even real life still blindsides me some days.

When heart parents talk to other people about their fighters it’s always in a vague sequence of events, “yes he had a cath”, or “he’ll need his first open heart soon”. What it doesn’t capture is the traumatic moment to moment involved in those things. Holding you still as you cry for your 100th IV, watching your motionless body and not being able to hold you, hearing your raspy, choking cry as they pull the ventilator out. 

You are so strong it blows me away. As I write this you are standing, pointing at me and smiling. You get through your long days at the hospital and then you are back to crawling, standing, talking, laughing. I'm sorry that this is going to be your "normal" and that I can't change that. But, you are a force to be reckoned with and I know that this will not hold you back. 

You fight harder battles than most people ever will and I am so proud to be your mom. Your dad and I couldn’t imagine anyone else but you. You have already taught us so much about what truly matters in life and we are becoming better people because of you. 

You bring so many people so much joy, little M. You don’t deserve the unfair hand that you’ve been dealt, but we will be beside you, pulling for you every step of the way. 

This first birthday is a victory over the monster that has tried to take you down. You are unimaginably tough, and that monster will not define you.

Happy birthday to our sweet, sweet warrior.