Advice From RARE Moms- A Supportive Response to SickKids Foundation’s “Strong Mom” Video

A heart-wrenching video created by the SickKids Foundation took over social media earlier this month. The short commercial showed a series of courageous mothers trying to cope with the realities of having a critically ill child. The message?

“For every kid in a hospital who’s missing childhood, there’s a mom staying strong.”

The foundation’s vision is simple, “Healthier Children. A Better World.” For more than four decades, the SickKids Foundation has invested its community’s donations into outstanding family-centred care, groundbreaking research and collaborative learning.

Rare moms left copious amounts of comments on the moving video, touting it as a real-life representation of what parent advocates go through on a daily basis in the Rare Community. 

In response, we asked the Rare Community on Facebook: “What advice would you give to a Mom at the beginning of her child’s medical odyssey?” Here are a few of their responses:

“As a mother who has had to advocate for my daughters health for over five years, my biggest suggestion would be to trust your parental instinct! Our gut instinct was given to us for a reason. If I listened to others including physicians not willing to be opened minded, we would not have the diagnosis of MCAD and the incredible team of physicians we do today. Thank you SickKids Foundation for raising awareness of what parents endure on our child’s medical journey.” –Tammy N.

“You never truly know how strong you are until you don’t have a choice. You’re in it and you don’t feel strong because you are breaking inside. No one says the right things! Doctors don’t seem to have answers or even be listening sometimes. It’s okay to not be okay, to cry to breakdown, to go somewhere secluded and scream. And you would go through all this pain and not have it any other way because that little person is your child, your baby! You will do whatever it takes for them! Don’t forget to sleep, eat, dream and continue to believe. Love is eternal and they feel when you are sad, when you are scared. Let them just feel love and love yourself, you are enough!”     –Heather P.

“Trust your feelings! You know your child better than anyone, and are their best advocate [even though you are not a doctor].  Also, don’t forget about your own self-care. It is okay to ask for help to make things happen.”–Tracy R.

“I can’t believe how real this is, I have been all these women, especially the one in the car screaming.  A true representation of the sometimes lonely world of a parent who’s fighting to get through everyday. This continues well after a child has left this world too.” –Lisa L.

“This really pulled on the heart strings.  We’ve all been there at some point. Find a support group. You will learn more from parents of kids with the same condition than any doctor or book.” –Roxanne M.

“This commercial sure hit home. So many times the tears have been shed in private and we pull ourselves together for our daughters. I’m a mom of two girls with rare disease. It took 16 years to get a correct diagnosis and five different hospitals in different states. Keep going, stay strong and reach out for help!” – Molly J.

“Hitting me on the week my daughter with Marfan Syndrome started grand mal seizures. Do not let educators, doctors, or nurses belittle your concerns; stand and fight. We now have access to all records and test results through IPhone mycharts. They are invaluable in keeping on top of everything. Stay strong!” –Pamela C.

“It is imperative that we take care of ourselves. We can not give to others completely and joyfully if our well is empty. Get your rest when and where you can, eat, freshen up, change your clothes. You’ll have a better and clearer mindset when you do.” –Kim G.

“Keep fighting, keep hoping, trust yourself and most of all keep as much joy as possible! Don’t be afraid to cry, to scream, but don’t ever give up. Our children are strong and resilient. They are extra-ordinary!” –Naik F.

“I know the mothers of these children are remarkable, but so are the fathers. My son is the father of an 8 year old boy, who has one of the 7000 GM1 Gangliosidosis, Type 2. Parents are not together, so the struggles are magnified. They are both remarkable people and parents. Let’s not forget Dad, OK?” –Judy H.
“Seeing this I realized I was not alone! Not only are our children strong but we are as well. Thank you!” -Cathy S.