The one question I’ve learned never to utter again

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Experience…that thing we get as time rolls on…is certainly the best teacher. Some would even contemplate that life is all about experience and the many lessons we learn – if we are paying attention to them, that is. This month my angel with a life-limiting illness turned 11 years old. In that time, many words have crossed my lips (many of them too colourful for this blog!). I’ve cursed God. I’ve thanked God. I’ve cried aloud “I can’t do this anymore!” and I’ve exclaimed “I’ve totally got this handled like the bad-ass mama that I am!” But there is one particular, mostly rhetorical, question that I no longer say. Time and experience…and heartbreak…has taught me to never utter this phrase again.

What else could possibly go wrong?

Well, in short, there is generally an all too long of a list of more things that could go wrong. And I know that all too well. It’s not that I think uttering that question to the universe could actually tempt fate to get worse. I don’t believe that because it won’t change anything.

One of the most important tools for a parent on this journey with a child who has a life-limiting illness is frame of mind. Dare I even say it’s part of the lessons our beautiful angels are here to teach all of us. If we cry out, be it inside ourselves in silence or aloud to whomever is listening, “what else could possibly go wrong?!” it is coming from a place within us of resignation…exhaustion…sorrow…and maybe even defeat, all of which are normal emotions on this rollercoaster ride of a journey.

When it comes to my son and his condition, I’ve made the conscious decision to never utter those words again because I found it took me away from where he is NOW. And as we know all too painfully, all we have with our angel IS NOW. We know that one day, something else WILL go wrong. It just will. Like it did yesterday as we met with the neurologist and she matter-of-factly (as all neurologists do) said that she has no doubt that my son is now having seizures daily, throughout the day, as evidenced by a new facial twitch that has been increasing the past 2 months. And so, one of his 3 twice-daily seizure medications has been increased, an EEG ordered (I’ve lost count of those now), and discussion of a possible 4th seizure medication was had.

And there it was: Something else went wrong.

Something else can and will always go wrong on this journey. It just will. And here is where one of the most valuable lessons we can ever learn comes to light…ACCEPTANCE. Intertwined with acceptance, though, is the beauty of learning to live in the here and now. Not for tomorrow. Not for yesterday. But for today. And today is such a gift. Every new day we have with our angels is a gift like none other we will receive.

So no more utterings of “What else could go wrong?!”

What has gone right today? Did you see that love beaming from your angel’s eyes when he looked at you? No, he can’t say the words, but did you feel that love being shot straight at your heart? That’s it…that’s what today is for…that’s the amazing, awesome, beautiful gift to focus on.

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