I’ve never been very good at communication. People ask me how I’m doing and without even thinking it’s an automatic response of “OK”, “Fine”, etc. I don’t like making myself vulnerable, expressing how I’m actually doing (or feeling). Although, when responses are like “I don’t know”, sometimes I just don’t because I can’t even figure it out in my own head. Ever since I was a little girl, I’ve always put others first. I’d rather see the ones I love happy, than myself. Seeing them happy, makes me happy. It’s the same thing now being a mother. I put my child and my family first, and sometimes I don’t know how to take care of myself, process, or deal with things. Having toddler, going on 19 months, who has an undiagnosed neurological disorder, with other medical complications, doesn’t make it one bit easier.
I thank god for this beautiful little man every day. When people tell you that they can’t remember their life before kids, believe them. I truly can’t. I have tons of wonderful memories of high school, college, becoming an adult and marrying my best friend, sure. But those little things like getting up and not having to worry about a disgusting poop that your kid has been laying in all night, being able to leave the house when you want without remembering to pack a million things that you MIGHT need while out for a total of two hours, going to the movies on a whim….yeah those are the things I do not remember. Because this amazing new love of your life has taken over, and that’s all that matters any more. That territory, and what our family has been going through on top of it, makes it hard to truly express and let people understand how you feel sometimes.
Like, I’ll fully admit I’m tying like I would write things in a journal, having the intention, and hoping to have the follow through, to publish to the blog. I’m sitting in bed while my child has his last meal of the day pumped into his stomach. He’s grunting, rolling around, and still wide awake, but has no problem hanging out in bed having his meal medically inserted through tubes into his tummy. Lord knows he misses the taste of food though (hopefully someday soon, slowly). I admit that I have a glass of whiskey sitting on my nightstand and I actually took the night off from the gym, because it has just been one of those days. Sometimes I feel like people don’t understand what it’s like to be a mom to a kid that has special needs, not even knowing the diagnoses of what makes up those needs! Comments I get from strangers ever damn time I leave the house with him, I bite my lip and just nod along, in no way feeling like I should be explaining personal things that are going on. Like how “cute he is sleeping”, when he is totally awake! Like asking how old he is and being shocked that he’s only a year and a half, and proceed into has he started walking and saying tons of words. People just don’t get that not all kids are the same, and I can’t even be like….”He has this ________.”, and they’d just get it.
It is infuriating, stressful, exhausting, and overall worrisome when you have no idea what his future looks like, what our future looks like, how to figure out for someone to properly take care of him as I start looking to return to work, not knowing if another shoe is gonna drop and a new symptom of whatever is going to randomly appear. If whatever it is, is genetic, I HATE that they don’t consider this kind of thing “urgent”, to be able to get in to see a specialist sooner, to have insurance say “no big deal, we’ll cover this”, because whatever it is, is done, there is no changing it and more than likely no treatment. Ok, well fine…but it could certainly tell us a lot of what to expect, how to plan our lives, and how to better care for the most important thing in our lives. Sometimes, a mom just wants answers and for others to understand that days aren’t always perfect (despite the usual kid issues). You have days like today where all I want to do is break down, throw things and yell and scream at doctors to help and get their asses in line. But then the cure for days like that, are many snuggles with this little boy, kisses (or sometimes bites as he has way too many teeth coming in at once), and then a glass of whiskey in bed ranting about the crappy day. Cheers to the “normalcy” we’ve had over the past few months, the hope it continues using that down time to make PROGRESS figuring shit out, sooner rather than later.
BTW, I’m sure I’m speaking very well on a father’s thoughts and emotions as well. I don’t think I could get any luckier than this mom is, having a wonderful, strong, and supportive partner in crime at her side ;-)
