Every cloud has a silver lining right? 

Many of my friends and acquaintances may begin to tell me about a problem or challenge they are facing only to put it in the context of something like “ I know my problems are nothing like your problems… “

And sure, I get it. The day to day challenges of caring for a child with rare medical conditions along with neuro cognitive deficits is no walk in the park, but the perception that because we were handed a different path makes life full of misery isn’t exactly reality. In fact, there are a few upsides especially when it comes to how we view the world

Benefit #1 We are not caught up in keeping up. 

We are in our own lane and most of the time it’s the slow lane which we have come to appreciate. The Jones’s are probably speeding by in their Porsche to their kids soccer practice and we wouldn’t even notice because our hands are 10 and 2 focused on the road ahead. We simply can’t measure our success against the norm since its not applicable to us. We celebrate good health, small wins and forward progress and that’s good for us. 

Benefit #2 We know true suffering.

Why is that a benefit you ask? Because knowing true suffering puts life in perspective. It eliminates getting down about the little annoying things while also allowing us to truly savor the simple good things. Nights spent snuggled under the covers in your own bed feel like heaven compared to being in a pretzel position on a torturous piece of furniture in a PICU room. 

Benefit #3 We see kindness everywhere. 

Through Alex’s brain tumor journey and in growing the Raymond A. Wood Foundation, we have see people show remarkable kindness. While the world may seem angry and hostile particularly during the pandemic, it’s comforting to know the true capabilities of the human heart. We see it all the time. Mysterious gifts left in our mailbox, kind messages of support, or someone dropping off a box of seashells knowing Alex loves to collect them. These moments are true joy.

So there you have it. There are many beautiful things that have come out from what otherwise could have buried us in a lifetime of misery. And what it all comes down to is mindset, perspective and a little positivity.

Amy Wood is mom to Alex (11), a craniopharyngioma brain tumor survivor. She is co-founder and executive director of the Raymond A. Wood Foundation which seeks quality of life improvements for survivors of hypothalamic-pituitary brain tumors. For more information, visit www.rawoodfoundation.org.