Today I googled what sizes pull ups and diapers came in. What size would my 113 pound 8 year old wear? Clearly we are out of the baby sizes, and we are going to eventually be back in them full time due to this disease, but for now, where do I start for days like this? And goodness graciousss, why haven’t I researched this until now anyway? Adult sizes, here we go. Hmm… I should definitely get some of those bed pads for the furniture too… ‘add to cart.’
It’s been a messy morning. I think you already get the picture. Also, never did I ever think that I would be writing a blog post about poo. Ha! Some days they are like this, some days aren’t bad at all and then there are some days I have to go to his school to clean him up a little bit. But here is a little visual for you for awareness sake. And now that I look at this photo, it really is my life, haha. And what better way to give a sneak peek into one of the shirts that will be in our shop this year!
It’s been day whatever since I’ve washed my hair, tomorrow is the day. My coffee has been the closest thing to a ‘bff’ around here lately. The tattoo on my right finger reminds me to ‘smile’ through it, the purple awareness bracelets and cross tattoo on my wrist that you can’t see, remind me to keep going and always have faith while holding onto all of the hard days, like this one, with a small handful of the only clean underwear he has left. One of the new shirts I designed reminds me (and hopefully so many of you) that you are created for a purpose, this just happens to be one of mine.
Just. Keep. Going.
There are piles of clean undergarments, blankets and towels on my dining room table (because isn’t that where it goes until you fold it and put away? No? Just me?) Bubs is laying on two towels, drinking fluids, enjoying cuddles with his buddies and watching cartoons as we speak. Two showers have been taken by 8:30am this morning.
Yes, he is potty trained. But there are days like this when we don’t share because we don’t think about it. This is just our life, our normal. And now that I have a diagnosis to share about, I want to share everything that I can to help as many people as I can. To help them understand and to help find answers if they need. So… I’ve been following him around watching his every move. Any cough, sneeze, laugh, hollering ‘mommy’ too loud, haha, you get it. And to the people in the back with an opinion… no, he’s not sick, he’s not running a fever, absolutely nothing else is happening today.
This is Sanfilippo.
On a side note, I’m thankful that I randomly decided to make a full pot of coffee to start off my morning instead of just one cup in my coffee maker, not knowing how the morning was going to go. Mama knows best? Mhmm.
To spare you all of the details of the very icky parts of these days, us as special needs parents still have to find the humor somewhere out of it! Today, George was a little help. And guess what? Owen thought it was funny, so that’s all that matters. #winning.
Do what you need to do to get yourself through the tougher days. But don’t forget, whatever it is that you are going through, you were made for this.
Nobody else. YOU.
You were made for this.