I’ve read a lot of blogs lately regarding the beginning.
I remember our diagnosis day vividly. I recall wanting to wrap my baby in my arms and run from the neurologist's office.
I had no idea where I wanted to go or when I would return, but I just wanted to run. I was terrified. I had no idea what life had in store for us and the more I googled the more terrified I became.
But the one thing I didn’t ask was “why me?”
I’m not saying this because I think that anyone is wrong for screaming why me at the heavens, but I do think adding one more small word to that question changes perspective completely.
When our son was diagnosed with his rare genetic condition, PMM2 congenital disorder of glycosylation, it was not a great time in my life.
I had just lost my dad tragically a few months before, and to be honest, I don’t think I ever had the time to truly grieve that loss. He was allergic to bees and passed away after a sting.
The odds of dying from a bee sting: 1 in 6 million. Rare.
When he passed I was so consumed with trying to figure out why my 5-month-old couldn’t hold his head up or why he was still at birth weight.
I didn’t have the time to let myself lose it, I was so worried about our son. But during that time one thing really sunk in.
It was that I wasn’t immune to tragedy. I was just like everyone else.
And then we got our son’s diagnosis. Again, something rare. I think this is when my perspective really changed.
I began to ask why not us instead of just why us?
When you add the “not” into why me it changes your perspective. Asking why me almost seems as though you think you don’t deserve or shouldn’t have any challenges.
Now, I get it. Sometimes it seems that you can do everything right and still feel like you’re being dumped on.
Sometimes you see others who you feel may not have any challenges in life and life seems to go their way all the time.
And there’s always the person who’s not as nice as you or has made so many wrong decisions in their life but it seems that they still “have it all.” But we all know that’s not true.
Especially in the time of social media we are only seeing everyone’s highlight reel.
Everyone is fighting a battle or has a tragedy that we know nothing of.
Screaming why me is completely normal. I’m not here to say that it’s not. Especially when it’s your child or happening to your family.
Lord knows I was not very happy with the man upstairs for loading me up with more than I felt I could handle. I know life is going to throw all kinds of things our way.
Life is completely unfair. There will be so many instances in life when you want to scream why me?! But I challenge you to add one small word the next time something unwanted comes your way.
Asking why not me definitely changed my perspective.
I’m not immune. I’m not better or worse than anyone. I don’t deserve more or less than the next person.
My extended family is kind, and understanding. Our family is very close, accepting, and so loving. One thing I know for sure is our son is definitely right where he needs to be.
So, why not us?