Awareness

Finley-Wishbone

Friday May 6 is “Wishbone Day”—an international celebration and awareness day for Osteogenesis Imperfecta, the disease my son Finley experiences. We ask our friends and family to wear yellow on that day and if they can, snap a selfie and tag us on Facebook or IG. If anyone asks why all the yellow, its a small PSA for living with OI. And we find ourselves saying “awareness makes a difference.” Every year I’ve struggled with this idea of awareness and what it means or why I care. The first few years it just felt good knowing people were with us. Seeing all the yellow online and around town made me feel supported.

But as we grow with OI, I realize that through all these years of asking people to wear yellow and snap a photo, I might be glossing over the real crap. The “how” part of how awareness could actually make a difference. I need to have an honest moment of letting people who love us know what their awareness could mean to our lives. Because YOU can truly impact our lives or the lives of others with OI.

I hope this doesn’t come across as preachy or angry. I feel neither of those things. This is me trying to raise awareness for more than a generically good feeling. I used to get a lot of questions about what people could do or how they could help us.

THIS IS IT: You can help by imagining my son as yours.

Listen, I get it. We live in a time when balancing the scales of empathy and personal priorities is constantly a struggle (think transgender bathrooms or nut allergies or black lives matter). I don’t want to ask everyone who knows our family to have a daily meditation about their actions or the actions of their children relative to mine. I know we’re all just trying to get along and there is a flood of requests from the world to understand their experience, talk about it appropriately and give it due respect. I don’t want to do that. But I do want to say the truth of my experience, assuming that if you’re reading this, you care to know.

Awareness for Finley could save him from weeks of pain. It could prevent him from feeling left out so often. It could mean I don’t have chronic back pain from carrying a 40 pound child with a broken leg. Awareness could mean the difference between Vic and I not wanting to get together in a group and being excited to spend time with others. You see, Vic and I want nothing more than to enjoy family get togethers and bring Finley to your child’s birthday party. We want so much to feel relaxed at group gatherings and be able to just walk away from our kid and yours. But time and time again we leave gatherings with high blood pressures and a kid who barely made it out without injury but not without anxiety.

In the past few years my sister and sister-in-law both had “ah ha!” moments after countless hours spent with Finley and they realized that they COULD save him from pain. By watching their kids and training them on how to behave around someone with OI. By not relying on me to see every little thing. By clearing his path if they saw toys lying around. By thinking of Finley as their own. By simply being aware and knowing that yes, his safety could partially be in their hands. These are real, actionable things anyone can do to help when around a child with OI. I am so thankful for their participation in Finley’s safety. It means I can be with my nieces and nephews and feel shared responsibility. Sometimes one of them will even leave the room to make sure Fin is safe around their kid so Vic and I can have-GASP!-adult conversations. I am so blessed.

Is this a one-shot deal? Nope. This is a constant trudge through orders of “do not jump on the couch around Fin” and “hey, we can’t have spilled drinks on this hardwood floor, who’s going to clean it up?”

**Being my family/friend is rough, people. This is the stuff of true love.**

It sucks, it is lame, but here is where the “imagine my kid is yours” comes in. I’ve seen my 6 year old go through more pain than any other kid I know personally. What would you do if you saw your kid screaming in agony, dripping in sweat from it and rocking himself, holding his baby blankie on his leg after a fracture—thinking it will help? What if you held your baby after a five hour surgery while he sobs in your arms from the pain?  Yeah, you’d want some awareness.

There have been moments when I have felt very low and forgotten by people in my life. This is an isolating disease. But this is why Wishbone Day is important. I want all of my friends and family to be part of our #WishboneSquad. To feel invested in Finley’s well being. To come on in to the party and start throwing elbows at crazy children who need to settle the junk down. Because a moment of rough-housing or flailing for your son could mean weeks of pain for mine.

If I can help bring awareness to anyone who wants to be close to a family with a kiddo who experiences OI, I feel like that is the kind of difference I want to make. If you know someone with this crazy disease and either you our your child wants to be part of their lives, become invested in the safety of that kiddo. Show you care by teaching your kids, not just strapping them down. Ask what kinds of things you could do to help ease the parental stress in group situations.

Awareness can make a difference, but only if we tell the truth of our experience. I’m thankful for everyone in my life who has made that effort, shown their love through the things that help keep my little man from so much pain. It means the world to me—to us.

toughgirl

Hi, I'm Shannon. I like to write about tough girls and tough things because I find strength to be an interesting and inspirational topic. My husband, Vic is my favorite person and my children, Emerson and Finley are right up there too. I am a disability mother and advocate. A woman-loving, lean-in type. And a fitness coach and cheerleader.

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One thought on “Awareness

  1. This text was just perfect. I have a son with Hi type 3, and all that you said reflects my feelings. Thank you very much! That’s how I’ll do my friends are aware from now.

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