With Evrett’s big appt coming up on October 5th with our “head honcho” (his genetic specialist), I kinda thought I would be more nervous. Afterall, we have no idea what he is going to say; will he inform us that the final stages of testing are complete, and that we have an official diagnosis for his type of leukoencephalopathy? Will he tell us that all of our searching since January has been off-base? Will he tell us that our darling Bug IS having absence seizures after all? Will he bring news of hope?….or will his words make our hearts sink? It’s a heavy appt, hands down, and although I’m aware of that fact 24-7, I’m still not scared.
Sure, there are moments when my fears from deep down bubble up and make my stomach do jumping jacks (thanks again to my amygdala, what a beast that can be to train! Ha!!)…but I seem to be able to acknowledge them, thank them for their service, and then let them go. The fear isn’t as consuming as it has been prior to other medical trips. Instead, I feel…steady. I feel hopeful. I feel like he is going to be ok!
Even as I type this, it seems as if I must be describing someone else. I’m usually not the calm one around, nor the patient one! All of this waiting is soooo not up my alley. Is it really me who has worked on her mental & emotional health consistently enough, for long enough now that it comes with almost no conscious effort to let those deep, dark fears just drift by as I stand calmly on the bank of the river of thought, and simply watch them go without letting them drag me down in to the current? Apparently it IS me. Because here I stand, smiling contentedly in the face of uncertainty rather than cowering in fear.
I also have something inside of me that I didn’t have before: the centering assurance that this darling little Bug of ours is actually going to be OK. He is going to have a GOOD life, a FULL life, and a LONG life. I just…know it. It seems as though I have stopped waiting on outside sources to reassure me of that, and have discovered that it was inside of me all along.
When we began searching for his genetic diagnosis at the end of January, it was unclear to us what this little angel’s capacity to learn and understand new things really was. His future seemed so foggy, so threatening. And those fears, for ME, are slowly melting away now. Day after day, Evy amazes us more. He picks a new thing up every day or 2, whether it be a new word, a new action, or a new funny face. He has proven to us all that despite his brain abnormalities, he IS LEARNING! 1 year ago, he could speak about 5-8 words, at most. And as of a few days ago, September 18th 2018, our amazing little guy hit 100 WORDS!!!
Seriously!!!! 100 words you guys! How inspiring is that?!!!
His 100th word came just before bedtime: we changed him in to a pair of his new fleecy pj’s, and as we walked in to his room, he climbed in to his bottom bunk, and said “good night”. And then, when Scott came in to snuggle the boys up, as he does every night (I’m blessed with the most wonderful husband, he’s a truly selfless father) our sweet Bug said it again.
Oh be still, my heart!!
Word 101 came the next morning…when he repeated “shut up” right after me. Ha!! I guess my hubby is right; apparently I really am going to have to watch my language now that he is echoing so much of what we say!!!! (Especially considering that word #98 was “oh shit”, after he crashed on his little strider-bike the other day!! I’m the one with the potty-mouth in this house, so my husband totally knows that was alllll from me. Sorry but not sorry Scott, I’m finding it absolutely priceless! 😉 )
100 words is a milestone I really feared we would never reach when we began this journey. Hell, even 25 words sounded daunting….50 seemed almost unreachable….and if you had asked me if I had confidence in getting to 100 words, I might have actually cried, because it felt like a pipe dream. And yet, here we are, he did it!!!!
102 words and counting, as of this afternoon.
I’m blessed just to be his mother. He’s the most amazing tiny human I have ever met. And this is how I know that no matter what the geneticist has to say on October 5, our Evy is going to be just fine.
——————————————————————————————————————————– ~Thank you for reading, and for supporting our darling Bug on his journey. It would mean the world if you would show support for our darling Evy, and help raise awareness for rare brain diseases, by following & sharing. If you have a helpful, positive, or supportive comment in mind, please leave one for us! We deeply appreciate you taking the time to be here.
Warmest wishes on your own journey.