Our stories, our why.
*scroll down to see why // where // how to donate
Becoming a mom is a huge transition. For moms that have had a complex pregnancy(ies) followed by a critically ill baby, Mother’s Day can sometimes bring more feelings of sadness then joy.
For me (Jessica), my first Mother’s Day was the day after Theo’s last closure surgery - it was one of the darkest and saddest days during my time at The Hospital for Sick Children. Theo was completely sedated - he seemed lifeless. So many questions ran through my mind post surgery - Will his intestines work? Will he develop another infection? How long will he need to be intubated? Will he be able to eat? Will he wake up and be in pain? Will he live a “normal” life? When will all the tubes be removed? And when, when, when...can I hold him?
My husband, parents and closest friends did things to try to make the day special but when your baby is completely lifeless and there is literally nothing you can do to help them, you are left feeling hopeless and for me, anything but a Mother.
During this time, I lived at Ronald McDonald House in Toronto. It was a weekend and they had a nice breakfast for the moms. Despite their efforts, all I wanted was to be HOME with my baby.
For me (Kayla), my first Mother’s Day went from something that I had always looked forward to, to something I was somewhat dreading. Waking in a completely different building, a block away from my baby and rushing over to the hospital to spend some time with him. The last thing I was expecting was a gift to celebrate this moment, I didn’t even want to think about it.
When I opened the door at RMHC that morning, I was greeted with a box, full of donations from wonderful people, just for me, for my very first Mother’s Day. Every Mama had a box. Every Mama was thought of at that moment. The fact that someone was thinking of US when we couldn’t even think for ourselves, was a special moment and feeling that I will never forget. I knew in that moment that when I was in the position to give back, to let others have this feeling I was so blessed with, I would do whatever I could to pass it on and make it happen for many more.
As soon as the pandemic started, all we could talk about and all we can still talk about is the mamas/caregivers out there, RIGHT NOW, living in the hospital with their child(ren). We can’t imagine the hardship of your experience - not being allowed to have spouses or family/friends visit to offer their love and support is unimaginable.
For this reason, THIS Mother’s Day we want all mamas to know that we are thinking of them, especially those living at the Ronald McDonald House in Toronto.
What Beyond the Beads is doing:
We have collaborated with loveloladaisy and some of the most amazing small businesses, local makers, and community members to put together a box for each mother living at the Ronald McDonald House in Toronto!
Each box ties in with our ultimate goal of Mamas supporting other Mamas. Contents of the box include indulgences like bath bombs, speciality tea, custom mugs, custom keychains, treats, and products that we would have loved to have when we were staying at RMHC.
In addition to the Beyond the Boxes, we are hosting and sponsoring the Mother’s Day Dinner at the Ronald McDonald House on May 9! Chef’s are coming in to prepare a special meal for families, to celebrate and recognize the Mamas who are doing it all, and holding it all together - especially in these trying times.
The last thing we want Mothers of critically ill and/ or hospitalized children to worry about, is having to come back ‘Home’ and have nothing to eat, especially after a mentally exhausting day. We say this because we lived it - Mother’s Day for a Mama living at the hospital sucks, it’s one of the worst times to be there. This is one more thing that we can do to make Mother’s Day extra special for these Super Mamas.
How you can help:
We are currently accepting monetary donations through firstname.lastname@example.org to continue to fill the Beyond the Boxes with goodies for Mamas.
We also have partnered directly with the Ronald McDonald House Charities of Toronto, for an official fundraiser/ donor page - that is also tax deductible, and can be linked here:
Either way you choose to donate, the money will be going to support families directly living at RMHC Toronto, this Mother’s Day on May 9, 2021. Both accounts will be linked together, and donations will show on the RMHC Beyond the Boxes fundraising page.
Beyond the Beads x loveloladaisy are partnering with Brand With Purpose to give families the opportunity to purchase a full box to donate to a Mama at RMHC Toronto!
These boxes are purchased and then physically donated on behalf of the Donor to a Mother living inside the House. The Buyer/ Donor can choose to have a card sent to their recipient of choice, representing the Beyond the Box given in honour of their own Mother/ Sister/ Grandma/ Aunt/ Caregiver for Mother’s Day.
Covid is affecting everyone right now, not just mentally or emotionally. If you would like to participate without donating, you can share our posts and our links to your social media, and help to spread the word. Anyone, anywhere can donate. Families who have experienced the NICU from anywhere in the world, or who have stayed at any of the Ronald McDonald House Charities Houses are able to donate and come together to show their love and support to the families going through it right now.
During the Super Bowl this year, SickKids Foundation released a commercial with a girl named Kaitlyn.
She is 24 years old and was diagnosed with a rare disorder called VACTERL Syndrome.
So this hits close. Real close. VACTERL is part of what Adam was born with. You can see the E stands for Esophageal. By the grace of God he had no other anomalies, and wasn't considered VACTERL. It's not usually like that though. Usually babies are born with more than one. It's extremely rare to just have the isolated esophageal atresia (gap). Seeing this young girl, so healthy, at her age, accomplishing so much, absolutely shakes me to my core. It's amazing. It just really hits me how... Lucky - it's not luck though, how blessed we really are.
The flashbacks, the fear, of being pregnant and not knowing the extent of Adam's condition. Every week going for ultrasounds, juggling life, work, so much anxiety. Every minute in the NICU having extensive tests done around the clock to rule every possiblity out. Dealing with genetics when they are surprised it's "only the EA" and are up our ass for more tests to figure out why, because it's so rare to have such an isolated outcome. Being told that even though this rare it's amazing but we're going to have to stay for a year.
Not knowing how this will affect our baby later on in life. Will he swallow? Will he eat? Will he be able to sit at the lunch table by himself with his friends? Go to play on time? Eat breakfast and go to hockey practice?
Seeing this beautiful girl, grown up, becoming a nurse, with so many VACTERL issues, what she's accomplishing, when Adam only HAD the one....
The absolute guilt I feel. How can I even compare. How do I have the right to talk about this when my son is the way that he is now? Perfectly normal, like it didn't even happen. When he's not suffering from any of the other VACRL anomalies or associations. When he is the small percentage that is ok from all of this.
Why am I advocating and raising awareness when he's fine. When it doesn't affect us anymore. It's done, move on, be grateful. There are still families that are suffering every day, with what Adam didn't have.
I see it as how, why, how come he didn't have any of that when everyone else does? Matt quickly reminds me to ask instead, 'how come he was born with anything at all?!'
This is what I suffer with.
This is why I do whatever I can to help other people. Because I am in a position to do so.
It's not a bragging right. It's not a debt owed. It's not holding onto the 'one moment my child was sick' as someone so nicely put once. Though my baby didn't have any associated issues, we lived at the hospital every day and every night for eight months. My pregnancy was traumatic and absolutely ruined from the moment I found out during the anatomy scan.
Living in fear every single day, no diagnosis, no understanding of the extent of my baby's condition. Not knowing when he was born how long we were going to be there for. All. Day. Every. Day. He didn't see the sun for months. He didn't feel the breeze. He was attached to a wall, through suction, so he wouldn't die. He was intubated, unable to move, on hard narcotics when he was less than a year old. Poison in his system to keep him alive. Crying with no sound, no tears. Complications with his lungs they deflated for the surgery. Fed through the tube through his stomach. Meds. Throwing up the smallest of pieces of mushed food.
Sitting with a teacher at day care, who made sure his food was cut up small enough, who made sure he had a drink after every bite.
Not knowing if I CAN have another baby because I know that I CAN'T go through more ultrasound appointments. I can't re-live that fear, anxiety, trauma that even the thought of paralyzes my body.
But somehow feeling guilty because of where we are now. Regardless of the pain of what we've been through. Others have it worse, so I'm not entitled to feel my pain.
This is what I struggle with.
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