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Connected by Rainbows

Written by Alison Fiorini

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Posted on May 18 2019

Marie wrote such a beautifully raw and profound entry for Mother’s Day. I think it’s the only way to describe Mothers Day now - profoundly beautiful and so profoundly raw.

Although I have to say I had not intended to follow up Marie’s blog entry with this, I feel compelled to share the following story of my Mother’s Day with you. It feels like a natural extension of Marie’s post as it reaffirmed for me, her truth, my truth, our truth - that love is what saves us. Our connections with people are the only way to get there. We are in this together and whether we like it or not, we all have a seat at the table.

My Mother’s Day was filled with many highs and lows; we spent time with our own wonderful mothers. My mother-in-law is in the hospital for knee surgery and we went to visit her. Thankfully, she is doing well but the whole idea of visiting “a hospital” with the boys was difficult. We then went to lunch with my mother at Auberge du Pommier, a restaurant Jordi thought was so fancy. We were seated in a room where we celebrated my mother’s 65th birthday — that was when all was well with our world. I remember that party so vividly. My mom was so happy and went around the table during her thank you speech to share a story about every guest. It was a special afternoon and Jordana and the boys were the icing on the cake for her. Present day, we sat in that same room,  Jordana is missing and my life-of-the-party mother sat quietly and smiled at all of us as she too is navigating through her diagnosis of dementia. Scary and unfair. I reflected on both scenarios and all I can ever come up with, is that these difficult times are yet another reminder that life is finite. The journey is hard but good and in the end it doesn’t get easier your experiences just make you better.

Later in the evening, we took the boys to Game 7 of the Toronto Raptors vs. Philadelphia 76ers playoff series. It was Laurence’s birthday “week” and Luciano couldn’t think of a better way to surprise him and get through the difficulty of the day by doing something fun and Jordi fabulous. So, unless you live under a rock, the excitement of Game 7 was worldwide. Toronto Raptors, Kawhi Leonard shot a mind blowing buzzer beater win for the Raptors. The streets were alive and the love from random strangers in their seats throwing high fives gave everyone such feels! Love is contagious. The energy that night proved this and confirms my theory that love is the only thing that’s real. I couldn’t help but think of Jordana being there, sending me love and high fives the only way she could physically... and I needed every single one of them.

On our way home from the game, we were stopped at the lights in front of SickKids hospital and as I always do, I stared at Sickkids and think of my time there with Jordana. I think of what is going on behind those walls. I think of children I know who are being treated there. I wish I didn’t know the ICU windows are located directly above the parking ramp, or what wing the Sears Cancer Clinic is, or that there is an underground tunnel across University Avenue between SickKids and Princess Margaret for children who need radiation. We used that tunnel every day for 30 days and took with us a team of people who helped us bring the host of equipment she was attached to. As awful and vile as all of that was, it has changed the optics for me in this temporary life; and has allowed me to feel more rainbows than I ever imagined. My pain is not just mine, it was not just hers, it belongs to the boys it belongs to her friends. But you need to accept all of it to heal.

My daughter has taught me there is more. My pain has exposed me to a new level of empathy and left me with a gift to connect with people on a new level that without a doubt, I couldn’t before. There I was, at the lights in front of Sickkids thinking of all this and I noticed a family walking across the street in front of us. I saw a man with a little boy on his shoulders and other children along his side walking across University Avenue. While they didn’t look familiar they were hauntingly familiar. The same pain I would see when my own kids would leave the hospital, I saw in this family. It’s like I heard a little voice say “Kayge” and I knew instinctively that this family was walking from SickKids and probably towards the Ronald McDonald House. You don’t believe me but I assure you it’s true. I never seen them before and I knew instinctively who they were. I was right.

I have posted on Instagram about a sweet five year old boy named Kayge Fowler who was diagnosed with DIPG almost one year ago. Kayge’s family is from Sault Ste. Marie. I have connected with Mandy (Kayge’s mom) via messaging and she is one of the most incredible humans and strongest ladies I have come to know. It’s this closeness you feel with other DIPG families that even though we haven’t met face to face, we can text and talk like we have known each other forever. I have only seen photos of Kayge and his mom I was aware he has siblings because of my conversations with Mandy. When that family walked across University Avenue I instinctively started to text Mandy “Happy Mother’s Day”. I told her I was in front of Sickkids and thinking of her.  Seconds later I got a reply saying the family I saw leaving the hospital was probably her family. I froze and I shared her text with Lucas. There are millions of people in Toronto and when I saw this family walk across University Avenue I knew with my heart they were Kayge’s family. I can’t tell you how but I can tell you when you’re open to it these connections fall into place as they should. Coincidences or ‘Godincidences’.

I know Jordana was there in that moment reminding me to stay strong on Mother’s Day, to know that these connections are real, they mean something bigger than what this finite life can explain. I will continue to choose Jordana every time and by doing so I will be her voice, I will be there for parents like Mandy as many mothers and friends, like Marie, have been there for me. I will continue to share Jordana and her love and connect with people to reaffirm an eternal promise, for that there is so much more to this life and if you stop to see it with your heart and soul versus the eyes you won’t miss it.


Kayge’s Go Fund Me page:

https://ca.gofundme.com/28b6r-help-the-fowlers?utm_source=sootoday.com&utm_campaign=sootoday.com&utm_medium=referral


Kayge Facebook page :

https://www.facebook.com/groups/862656220572604/

Comments

3 Comments

  • What a Beautiful post Mother’s Day Read. Although it brings me to tears I feel every emotion you explain and I know that is a gift. Thank you for Sharing and always reaffirming what I already know to be so true.🌈🌈🌈 Kayge and his family are in my thoughts and prayers. ❤️🙏🏻

    Posted by Sonia | May 19, 2019
  • 🙏🏼💜

    Posted by Ang | May 18, 2019
  • Thank you for sharing what you see with your soul and your heart❤️ Praying for Kayge and his family🙏🏼.. May your angel guide you always 💕

    Posted by Teresa Spataro | May 18, 2019
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