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 email@example.com 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.
When people hear the phrase ‘baby weight’, they often think of the extra pounds mamas hold after carrying a baby and then delivering them into this world. Contrary to popular belief, this is not what I am referring to. To me, I am referring to my baby’s physical weight. Never in my wildest dreams would I have imagined the hardships our family would face to get our children to eat. I always thought that once my baby’s intestines were back inside their belly, they would do all the things a “normal” baby does...aka EATING. It has been an extremely exhausting process - both mentally and physically - and I’m even getting teared up while writing about it.
My eldest, Theo, struggled to gain weight in the hospital. I began pumping and he would receive my milk through a bottle. The next step was to fortify the breast milk to help him gain weight. But anytime he had a successful feed, he would vomit it all up and then some. We were feeding him every 2 hours around the clock. It was just horrible - at night the nurses advised me to wake him up by changing his diaper then using a cold cloth in hopes to heighten his alertness and thus consume more ounces of milk. Then every time Theo made weight gains, his milk volume would increase and the cycle would begin again. It felt like we could never catch up. I so desperately wanted to get the hell out of the hospital - mentally I wasn’t coping at all. The staff agreed that home would be a less stressful environment for everyone and hoped less stress would improve eating.
Being discharged from the hospital is a surreal experience. You feel excited but with that comes so much guilt about leaving the other families that will be there for longer periods of time, or even worse the ones that don’t get to go home. And above all you’re terrified! When you’re in the hospital with your baby for long periods of time there are so many people checking your baby 24/7. When you go home you’re not only a new mother but also nurse.
When we got home with Theo, he would drink only half of his small bottles. I continued to pump for a couple more months but he still wasn’t gaining weight. I decided to throw in the towel as our whole freezer was full of unused breast milk! We tried every medication for his reflux but he continued to constantly vomit. My day consisted of trying to get him to eat at the perfect time so he could get in the correct volume and subsequently being covered in vomit throughout the day. My husband was super supportive and tried to feed Theo as much as he could when home because of how stressful I found feeding. Everyone would tell me that Theo could sense my stress but this only made things more stressful.
I kept asking myself: “I am his mother, why can’t I feed him?” My whole life revolved around getting a certain amount of ounces of milk into him my month and later G-tube, then reporting the information weekly to our nurse practitioner/pediatrician/family doctor. It was extremely frustrating because my husband would be able to calmly feed Theo and he would drink his whole bottle. It was so infuriating because I was the one that was producing the milk, I was the one that was home with him all the time and I was the one up with him constantly through the night but yet when daddy fed him a bottle he ate it all and went to sleep… Like what the hell!?
The trauma from being in the hospital plus literally NO sleep at all left me in very bad shape. I couldn't understand why I could not get him to eat and felt like a complete failure. I was diagnosed with Post Traumatic Stress Disorder and severe PostPartum Depression.
As mentioned in my bio, I am a fitness enthusiast! I thought I would be that mom that always comes with the perfect healthy snacks and have these amazing homemade recipes. Instead I was the mom with the unhealthy underweight baby. I wanted to be a mom so badly, but here I was feeling like I would get the “mom gene”.
Despite my mental state, I was determined to join a mommy playgroup...right, is that what a good mother is supposed to do? It took everything I had to get to that playgroup, but I did it and ended up meeting a lifelong friend and many other fabulous mamas. But the thing about this mommy playgroup is obviously all you talk about is all things baby, which usually includes eating and growing.
Everywhere I went it seemed that people always commented on my son’s size….even strangers! One of the worst memories I have is the first time I went to a singing class with Theo. I was so proud of myself for getting out the door and excited to be doing normal, non-hospitalized things. We went around the room and said our kid’s names and ages. I remember telling the group that my son was six months old and I can vividly remember the reaction of 2 other mothers in the group. I remember exactly what they look like, what they were wearing and their faces. I remember them grasp as their jaws hit the floor when I told them my son was only six months and approximately 10Ibs. They couldn’t believe how small he was. Then when you are not sleeping and you were plagued by the trauma you went through at the hospital, comments like these would put me over the edge.
I felt like a failure and a horrible mother. I had dreadful thoughts about me and my baby, and struggled to connect to him. To read more about our feeding struggles and tube feeding, you can read the feeding and tube post on the blog. But I want to get back onto the topic of weight.
As a woman it would be completely offensive to say to another woman after they’ve had a baby “oh wow, you’re still hanging onto a lot of baby weight”. For me, I would take the same offense when others called my baby small. When someone would make a comment regarding my child’s size it was not them matter-of-factly stating the fact that he was small, for me it meant he was small so he was sick. He didn’t have enough nutrients for his brain to grow, he could have to be admitted to the hospital again...and above all I am the biggest failure in the world for not being able to feed my kid.
Looking back on it, of course my kids would be small! He was not held or fed through the mouth for 2 1/2 months. Of course my kids are going to be delayed at walking and crawling and moving their head as they were literally addicted to opioids for the first two months of their lives
How to get through it when you’re in the thick of it:
Things that helped me were:
1) Getting my husband/family members to feed my son the bottle as much as possible without me being in the room.
2) Going to a friends house during meal time as he would usually eat better with other children around.
3) Asking help from grandparents for feeding, especially on the weekends.
How to deal with negative feeding comments:
When you’re in the baby phase, all you seem to talk about is how your baby sleeps, eats and & poops, and that’s pretty much it (or at least that’s all I heard). But when your child isn’t achieving these basic baby survival markers, and you are in constant communication with a medical team, simply hearing a conversation about another child’s positive weight gain, is enough to really put someone (ME) completely over the edge. I remember getting together with a group of my university friends that I hadn’t seen in a while for a play date. At this point Theo was being fed through his G-tube. During the playdate, everyone casually was feeding their babies and food was a huge topic of discussion. I remember leaving and driving home while connecting Theo to his G-tube in the car ride. I was bawling my eyes out. I was so angry and upset that my son had gone through so many obstacles and was still struggling with eating. He literally had a hole in his stomach to eat. One of my closest friends in the whole world called mem after the play date. She mentioned I seemed a little off and asked if I was home yet. I should’ve been home in about 45 minutes but the G-tube bag wasn’t distributing the milk properly and I had to stop many times on the way home to reconnect the bag. I would often give feed Theo small feeds in car rides because he was elevated in his car seat and this helped prevent reflux. I explained to her that I know it’s a normal thing to talk about eating but all we did was talk about eating and snacks and Theo doesn’t need anything right now through his mouth. I explained to her that I just feel so overwhelmed. She said so many wonderful things to me and reminded me that she had no idea how hard things must be for me. People like these are your tribe! Keep them close to you. and Despite them not fully getting what you’re going through, if they’re able to divert the conversation or simply acknowledge that talking about weight and feeding is a really triggering issue, these are the people you want to stick with.
Unfortunately I have tried to talk to other people in my life about how these comments can be hurtful. To them they may might just think it’s a casual comment about their kid’s development, but to me it’s a constant reminder of what my kids have had to go gone through, and the worries I have still about their growth and development. The unfortunate thing about having medically complex children is the people you think will really understand you sometimes don’t, but sometimes people come into your life who are able to support you in unimaginable ways.
Everyone’s got their crap and everyone’s got their story but as a friend you need to know your audience. My closest friends would never tell me about their kids' doctor’s appointments because they know that I’ve literally lived in and out of the hospital with both of my children for three years. It’s not that they don’t think I don’t care about them and their child, but they know and understand still grieving my experience.
1) Avoid situations where there is a lot of baby talk. Even if it is a baby shower, your mental health comes first! Celebrate with your friend with a private dinner date. If they are a true friend, they'll totally support you.
2) Remove people from your life that trigger your trauma and do not support you. Family or not - YOU have a family now and that comes first.
3) Consistently remind yourself of the GOOD and UNDERSTANDING people in your life. Stick with your tribe no matter how big or small.
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