This weekend was spent winding down from the 24 Hour EEG and celebrating the positive news that the ACTHar (injection steroid) did, indeed, control Paige’s Infantile Spasms. I have to admit, it felt awesome. Awesome to not be constantly thinking, worrying, waiting, planning, or scheduling. It felt like a
small HUGE victory and a weight off of our shoulders. Throughout the past month or so, life has felt like a rapid fire of appointments, diagnoses, treatment plans, and acceptance. Some days it felt like there wasn’t enough of me to go around. Some days, I felt like considering how fresh everything still was for our family, overall we were doing pretty well. I’m starting to believe that happiness truly is a choice! Actually, it’s an easy decision to choose when your only other option is defeat.
I would be lying if I said that I didn’t have dark moments where I think of all of the scariness of the “could be’s”. There are a lot of them and I do go there sometimes. It’s not productive and it’s something that I’m striving to overcome, daily…
Then there are those moments. The little occurrences that happen all too often that probably slipped under the radar before. Like, when I’m rocking Paige to sleep and I look at her fuzzy little head and pouty little lips and realize she is still just a baby. An eating, sleeping, pooping, peeing, baby. All she really needs from me in this moment is for me to love her – just like any other baby. Moments like how she gets excited when I feed her in the big girl high chair and how she grunts, excitedly, for more in between bites. In that moment, she is thriving and happy – just as she should be. It’s when she kicks her feet in the bathtub and giggles at her silly brother when he’s playing with her toes and giving her sudsy kisses. In that moment, I am a mom savoring precious time with my two, little, and beautiful children – just because I can.
There are many of these moments throughout the day and I make sure I am a lot more mindful of them when they happen, and really, that’s such a beautiful thing. I’m talking taking it all and and running with it! Talk about blessings in disguise?!
I’ve also been spending a lot of time really watching my two year old, Will. I watch him climb on a clothes hamper to play “cooking” in my cupboards, jump and roll around in the snow, hide crayons to color on the wall when he thinks I’m not looking, jump across the room from the ottoman to the couch. I watch him all of the time and don’t take for granted how easy it is for him to do all of these things. I’m in awe about how eager he is to explore and how he, is so young and, knows he should try to cover his tracks when he’s doing something naughty. For obvious reasons, I correct his behaviors when they are wrong, but I always take lots of mental photographs because I know they will be such good memories that I’ll hold with me always, especially when he’s older. And if I’m really quick, I can get actual photographs too!!
“There’s a crack in everything, that’s how the light gets in.” -Leonard Cohen