After the rain.
It’s me. Hi. I’m the problem, it’s me.
Some days, man... some.fucking.days.
For all the folks that have witnessed any of my emotional breakdowns lately, know that I'm good.
Fortunately, most of my random crying spells have quieted. And I can talk about Aspen and her future without them. I can box my shit up with the best of them.
This isn’t to say damn dams aren't broken after like, slipping on steps at the gym and cracking my head on the railing. I was more mortified by the damn water works that were shed at the start of teaching that class than the blood streaming down my face. Yeah, umm, that was cool.
Our bunny escaped and went missing. That one surprised me with how it hurt. Let in some cracks and released some guilt-ridden tears in how I should've prevented it.
My oldest is struggling some. Combination of performance anxiety, a drive for perfection, meeting higher demands with running + school - all fueled by a steady diet of comparison, hormones and social media and it's a recipe for hurt. Hers and then mine.
My dad is really sick. That threatens to crack my surface daily.
We all compartmentalize and live our lives.
Where mostly, and on good days, we have our shit together.
It’s been a few months now.
A few months after a name was given to potentially define our course with Aspen....
A few months since receiving a relative answer in understanding why things have always been so hard.
And a few months after receiving a diagnosis that we decided won’t define our girl.
We recently were back at Levine’s with our geneticist. A woman who has shown me incredible patience in literally answering the same questions 50 times over before they seem to stick.
It’s funny how much your mom brain refuses to fully accept or sometimes process what you don’t want to hear about your child.
She once again walked us through what this diagnosis has meant for some and also, how little we know in how it will impact her specifically.
Aspen turned 2 recently.
We had our sights set on hitting 18 pounds as an arbitrary goal I suppose. She’s still a pound off that which honestly doesn’t really matter.
In time, with the help of her endocrinologist, Pen will undergo additional testing to determine how much growth hormone she’s producing. This will then impact our decision regarding growth hormone injections, which honestly, I’m not super pumped about.
I’m told that the benchmark for many with growth failure + genetic syndrome is to ideally get them to a height of 4’9. Anything under that only serves to make life harder. And as we know, life can be plenty hard enough.
Additionally, Pen has also been sick. Like, permanently sick. Battling various respiratory illnesses that she will be prone to likely due to the immune system weaknesses that accompany her syndrome.
Her immunologist would like her to receive additional booster vaccines to determine whether this will serve her body to develop the necessary antibodies required to maintain health. At present, the typical vaccine course most receive is one that fails to spark her immune system to fight off the continual onslaught of germs she’s exposed to. Will additional boosters help? Maybe, maybe not. Do you try them? Maybe, maybe not.
Most of the situations and scenarios with this turkey leg are impossible to figure out, as there really are no answers or directions that are ever very clear. Or at least where I feel 100% confident. Where in my gut, I'm like, yep, I get it and yep, that's the right move.
It drives me bonkers, honestly. I used to feel like I knew what I was doing as a mom. Well, I mean, what a joke, but ya know, kinda. And especially after a glass of wine.
With this one? We truly have no real guide or projections for her growth or her development. The number of kiddos with her condition are few, like, very very few. A couple thousand known cases so far. In.the.world.
This leaves little predictions by her medical team for what to expect.
How big will she get?
Will she need a great deal of support in school?
Will she be able to drive one day, go to college, live independently as an adult?
Questions that terrify me, but also are so far down the track that it would be silly to spend too much time there. In worryland. Where it's pretty much a shithole.
Reality is, as much as I would like to know what to expect for her future, I can also appreciate how much I don’t know what the future holds for either of my other girls who’s genetic makeup looks very different.
So here’s where I snap back into today.
Where she remains at 17 pounds with an overall slowing of her growth, but continues to eat well, so much more than she ever ate before.
Where she’s walking, trying to run, trying to tackle steps, losing her balance less and less and improving her coordination to only grow stronger every day.
Where her language skills have exploded in a way that gives me profound hope that anything is possible for her long term cognitive skills and development.
And speaking of hope, back to Levine’s this week and the continued conversation of when we can remove her g-tube. Something we’re close to. Something that I was once told could be 10 years away.
I’d like to think this a perfect example of not only how far she’s come, but also how much she’s set to prove to her team how far she’s going to soar.
And tears that come from watching that? Definitely, but those are the good ones.