Today, my son ate birria tacos...and I cried in the bathroom.
on forgiving myself for the things I did not know
There’s no Brunch this week. I have been sitting in all of my feelings. And hardly any of them positive. My last post here (see below) spoke of creating a space for hard, and I meant that.
The times I share my most vulnerable pieces I am often in a season of challenge. I am often struggling in some way. And I almost have no one to share these difficulties with. I don’t understand how a community can call itself a community if its members fear speaking about their lives in a way that would demonstrate why they are in need of community. My inbox is full of those whose lives are being ran by the might of the wind and they have no idea what direction they are heading, and they have no way to steady their feet. We are a people that are drowning on dry land and social media would rather pretend we don’t struggle or condemn those who share that they do. Granted many share their struggles in ways that I find to be less than ideal, but there are many who really need the connection to those who they feel can understand what their lives are like. I don’t believe that we have healthy space to commune with one another. A situation I am looking to remedy. More information on this to come in the in the next few…whatever (don’t get me to lying about when I am gonna drop some gems on this project).
What I want to talk about is the fact that my son ate his first birria tacos today and I cried in the bathroom because of it. For those of you who know me, my son, or are familiar with Autism and the propensity for enjoying the same foods over and over with little to no variation or changes to their diet you might find my tears to shed out of joy.
And they are. Partly.
But many of those tears burn hot from sorrow, regret, and remorse. Guilt rides beneath my skin terrorizes my insides and not giving a moment of peace. I shared on social media the frustration I feel from our disjointed medical system, the lack of care, and the expenses associated with being disabled we face on a regular basis. I mentioned the difficulty I had with finding emergency dental care for my son who appeared to be in pain. I am making my best educated guess and there’s a part of me that worries I could be so very wrong here and schlepping my family across the state, racking miles on my Expedition and putting dents into my pocketbook for something that might not even be the issue is what keeps me up at night.
Having said that, I am fairly confident that his mouth is a large part of what is going on with him. So, I won’t go into the process it took me to eventually land on having to drive 5 hours from home to Lubbock to visit the same dentist who did his last surgery last year. I was hoping to find someone closer. I was hoping to find someone with hospital privileges that could get him in sooner. I was hoping for a lot of things that I honestly shouldn’t have been hoping for. I knew better than that.
But this isn’t what had me in a bathroom snot crying while the shower ran. It was the noticeable difference in his mood and behavior for the better. It was me feeling deep regret for not doing something sooner, for not quite recognizing what was going on, for listening to doctors tell me that, “it’s just Autism” and prescribe new medications. It was for me not doing not what I often tell parents to do, check the medical. Always check the medical. Something could be going on in the body that could be causing such discomfort that it alters how we behave.
I won’t get into the specifics of my son’s behavior changes, but they are difficult for all of us to help him with. He needs us to help him. And we didn’t know what to do. I feel profound sadness as his mother for not doing what needed to be done. While I will not share all of what changed in him for the negative, I will say that one thing that bothered us was him not eating as much as he should. And not sleeping. We were all zombies around here. Taking turns to sleep while he sat up all night long.
My son is put at the top of the dental surgery list but on the regular schedule for October. He was given some strong antibiotics in the meantime in addition to some strong pain medication. He has been taking both for the last few days.
He has been sleeping more these last few nights.
He has been eating more and more.
He has been trying to communicate with us more (something he had stopped doing the last few months).
He was already beginning to try new foods lately, but he wasn’t eating much overall. He has been eating so many things that aren’t fries. And liking them! Still not much success with most vegetables. Today, while at the outlet store in Round Rock, he didn’t struggle as much with the crowd and he ate so many birria tacos! Texture is a big thing with him, and he doesn’t go for soft and mushy feeling things too much. Or cheese. Or tortillas. Or sauce. And these tacos had ALL of that.
He loved them!
And I felt so many emotions. So many of them. As I and type this we are making him more birria tacos at home. We want him to have more of the thing he appears to love at the moment. I want him to eat so much of it. I want to see the smile he has been smiling so many times these last few days. I want him to continue to progress towards his normal. I want him to be happy and healthy.
Healthy.
That is what sent me to the bathroom to cry into the sink as the shower flooded the tub.
I am supposed to know what is wrong with my children. I am not supposed to let him go for so long without knowing, without seeking, without helping. I am supposed to question everyone and everything. I am supposed to ask questions when I don’t know the answer. I feel as though I failed to show up. And just him looking as he appears to feel better is proof that I messed up.
This isn’t something that is going to keep me down for long. However, I need the space to share that I am not alright (and I will be…at some point, but right now, I need to cry). I realize that sharing this and sharing this in the way that I would have liked to share it, with layers of complexity and respect for all of us but giving reverence to the unique challenges we face regularly would have surely been met with resistance. Because we do not live within a community that is welcoming to existences that reside outside the binary. There is a way to talk about the challenges we face as if they are indeed challenges that make our life more difficult while respecting who we are and who are children are. We need this for our people. We need this so we do not feel alone and isolated. We need this so that we know what each other needs.
Because sometimes, the children are not okay.
And we need our village.
Y’all stick with me as I work to build our village and I hope to have something for you all before the year is done. This is a massive undertaking for me, but it is something that I have to get off the ground.
YAY, Aidan, for trying Birria tacos! Mmmm...tacos are one of my samefoods, and the Birria hits just right some days. BIG HUGS, TIFFY....coordinating care is exhausting AF. Hoping Aidan gets the care he needs...especially in his mouth! Can’t imagine that if he was in pain, how difficult it would be for him to go about daily life. Love hearing about Aidan, blossoming as all of this is happening. He’s got the right mama, that’s for sure. You’re doing a great job, even when you don’t feel like it.
Sitting with you in the heaviness of these feelings...the feeling you should have done or been more, the joy at seeing him find some relief, yet wishing it had come sooner. You all got this, even when you feel you don’t. You keep showing up and you keep going and you keep being, and that matters, to Aidan, to Jojo, to your whole family and this community. May the tears be cathartic and cleansing, may you find energy to rejoice in getting some relief, may he get the care he needs as soon as possible and may y’all have some deep and restorative rest.
Thank you for sharing and cultivating this space.