Today is one of the days I actually look forward to. I get to go back to Boston Children’s Hospital and give them a donation that I know means SO much to the families in the ICU. A small gift to let them know they are being thought about.

It may seem strange to many that I actually look forward to going back to one of the hospitals that Quinlan lived at, that he was his sickest at, where we almost lost him, where you see things that you no one should ever have to see. Something that shouldn’t even exist in this world. Sick children.

I was driving in to 300 Longwood ave, something I could still do with my eyes closed, almost 5 years since his last hospital stay, knowing exactly which lane on Storrow drive to switch to at which point, and which light I should be in the right lane to avoid all the cars turning in the left. Feeling like it was 2015 and Quinlan was being his perfect self, hanging out with the nurses and doctors who had become his second family.

Approaching the turn from Brookline ave to Longwood ave, transforming myself back to the feelings of great anticipation, being SO close to Quinlan, yet knowing I still had to make the left-hand turn at the light (often times having to wait through 2 or 3 sets of lights), then making the second turn to get into the parking garage, finding a parking spot, crossing the street to enter the hospital, sign in, and finally be where I needed to be. Each level of that parking garage knowing I was getting closer and closer to going in to see him. Sometimes it had been hours, sometimes it had been a day but the giddiness of knowing I was moments from seeing him and kissing him, holding his hand and running my fingers through his hair never wavered.

Today (and every visit since his death) that feeling is a mirage. The same emotions showed up, purely from muscle memory, but Quinlan wasn’t there to ease the frustrations of traffic and long car rides. He wasn’t there to make any other worry I had completely disappear. This time I crossed the bridge that was not yet finished when Quinlan died. This time I was bringing small acts of kindness to other parents who had the same anticipation when they approached the hospital where their child was fighting for their life. And this time it was 5 years later and I was there for a completely different reason. A good reason, but a reason that only exists because Quinlan was born with a mutation of the Brat1 gene.

If there are so many emotions involved, why is it something I look forward to? Knowing I’ll most likely have a grief hangover the next day? That I’ll most likely break down and have a good ugly cry at some point in the day? Today the break down happened before leaving for the hospital while getting ready. I went through all stages of grief in about 15 minutes. All while wondering why I’m the one who had to lose a child in order to have this passion for helping others, never again being naive to the fact that this world of sick children exists. At the same time feeling grateful that the most incredible people have been introduced into our world purely because we are the ones who have lost a child in order to have a passion for helping others.

I look forward to being at a place where Quinlan was always alive. Quinlan always left the hospital to come home. The people there saw what Bear and I went through every single day. They heard our questions, knew our concerns, and lived it right alongside us. There was no having to explain how Quinlan was doing. They knew just as well as us. There was no questioning the torment we went through with daily decision making that no parent should ever have to make. They saw it and were a part of it.

All that to say, this is why I look forward to this day. It’s a connection to Quinlan I will never have anywhere else. A connection not many can say they have but one I’m thankful for every day.

💚Mama Bear

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