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

Today’s the day you can help!

It’s that time of year again! With Quinlan’s birthday one month away, I’m diving into fundraising again. This year, I’m spreading it out a little bit and in addition to donating money to the ICU at Boston Children’s Hospital I’m also going to be donating to an amazing organization called Courageous Parents Network . They do so much for parents of children with all different illnesses, as well as for the bereaved parent’s community. I definitely encourage you to check them out if you want to feel inspired!

This year I’m trying something new and I’m so excited! I’ve created a design and I’ll be selling t-shirts and sweatshirts to raise money for these two amazing organizations.
The design is something I created to help remind parents of what lives in them during the most difficult time in their lives: PERSEVERANCE. RESILIENCE. STRENGTH. Whether being in the ICU with your sick child, at home not knowing how each day is going to go, or living the indescribable life of a bereaved parent, these three things live inside of you and help you move forward every day.
The waves in the middle of these words represent the ups and downs of life. The good days, and the bad days. It’s never consistent.
I chose the black and white colors for one reason: rare disease. The zebra is the official symbol of rare disease with its uniqueness shown in its black and white stripes, just like Quinlan and every other rare child.

Since Quinlan would have been 7 years old, my goal is to raise enough money to give at least 7 families each 7 days worth of parking passes, as well as give Courageous Parents Network $700! Can we raise more??

T-Shirts $25 ($10 from each will be donated)
Sweatshirts $35 ($20 from each will be donated)
If interested, please Venmo me at @Lindsay-Weekes and include the style, color, and size. (Details to follow about pick-up/delivery of shirts.)

Thank you all so much! Even just by reading this you are bringing awareness to the parents struggling while in the hospital, knowing a hospital stay is around the corner, or missing their child every day. 💚