Trigger Warning- this shit is heavy. Like so heavy, or just honest, I questioned even posting it. Maybe no one else thinks this way. It’s raw. It’s real. And I may be heavily judged by some humans but… Let Them.

I’m sitting here, blowing up balloons with the kids, decorating for my husbands birthday, I am struck with overwhelming love and gratitude….. followed by an immense heavy dose of grief….. grief seems like a heavy word to use…. Especially in reference to a child who’s directly in front of me…. But it’s all I can think to begin to describe this feeling…. I didn’t know for a long time how to deal with these emotions. I felt like a bad human for thinking and feeling this.. she’s the most magnificent little magical being on this planet, and I’m constantly grieving the fact that she doesn’t get to live this type of life that I get to live. She more then likely won’t have babies of her own, create a family and home of HER own. She will most likely forever exist in the one I’ve dreamed up and created. Not one she’s chosen for herself. She’s going to live the one that I have given to her… forced upon her in a way. The one she was dealt. And to me, there’s so much sadness in that. But Trust me when I say that I have so much hope that she’s going to surpass every goal I have set for her. You have to have hope. It wasn’t until I started attending yearly mothers retreats and going to therapy that I realized that what I’m doing is living in a constant state of grief. But a weird living grief. It’s fucking weird y’all. Her Autism is easier to navigate now… well at this stage she’s in. I know how to find resources. But the older she gets, the more her intellectual disability diagnosis looms in the background… waiting to become forefront.. or maybe not… there’s so much unknown… and it’s bringing on lots of new emotions… actually not new emotions per say, just like a heavy dose of LOTS of big emotions.

I’ve been reflecting a lot about Elle…. As per usual…. The school year is coming to an end. I’m looking back on where she was when school started and where is she now. So much growth. She’s been using the big potty sporadically at school. She’s ate at the lunch table with peers and not her aide a few times. She’s talking a bunch. Like, an insane amount. She’s staying at school until 1:45pm. Just- so many wins. But here’s where things get weird. I’m feeling so happy and grateful and proud. But yet I am filled with so much grief. Heavy fucking grief. This one’s going to be about living in a perpetual state of grief and happiness.. Learning to accept that they coexist inside of me…..what it’s like to feel like I’m constantly treading water….in a constant state of fight or flight basically…. Every… damn…. Day…. I don’t have any answers on how to deal with this. But I’m aware.. And after reaching out to a fellow special needs mom, and listening to her, I realized that she’s drowning too. She’s at a different stage than I am. Our journeys are all different. But I think these feelings might be common. More common than we think. Just not talked about. I wanted to hug her through the phone. Then I saw her again in the school drop off line and wanted to jump out and hug her again. I’m slightly a lunatic 🤣 This life is beautiful but it’s so heavy. Mind you, things could be so much worse. I tell myself that constantly, but it doesn’t make things any easier. I celebrated my girlfriend’s birthday tonight, and my husband text me our 6 year old was amazing but she peed 80 gallons onto the floor in her bedroom… her big sister was in the bathroom and she didn’t know what to do so she went on her floor…that’s what we think happened anyways. It’s normal for us…He was super nonchalant about it. It’s hard to not let every little thing make me sad. He does amazing with her. Life’s weird. And it isn’t openly talked about. Sometimes- all we need to do is hear-I’ve felt that. I feel that. I’ve been there. I think this too. I’m there too. I see you. I. See. You. That’s sucks. That just really fucking sucks. The isolation is so fing real as a special needs parent. It’s deafening.

My husband- he’s a damn gem. But there’s something so therapeutic about being raw and real with another special needs Mom. It’s a bond that’s simply unexplainable. To be able to open up and say things you feel like you shouldn’t say aloud, but to a special needs mother, you can do just that. They see you on an entirely different level. They don’t just see you, they live it too. We all experience the special needs life in different ways, whether mentally or medically or both, but we all have these insane feelings. One day, my husband was gone, I was having a great day. My fellow special needs mother and close friend text and said, I’m having a day, I’m coming over. Done. I instantly got out the Tito’s and juice. The kids played. We ate chips from the bag- I’m a big time host so for me, this is rare 🤣🤣- we sat and flapped for hours. Hours. We cried. We just openly cried as we took turns sharing our days. Our struggles. Laugh crying about how we only cleaned up shit once each that day. Things that are our normal but are actually just kind of fucked up in reality. And it was beautiful. And so fucking ugly. And when she left- I had the biggest sense of relief. And also, I’ll forever see this woman different. It was a core friendship moment. It’s really hard to put into words how you feel. Humans don’t do it enough.

Living in the grey. I’m such a black and white human. Grey gives me anxiety. I do great with black and white. I mean, I love a big color coded calendar and a trip itinerary. I like to pre look at menus before I go out to make sure I’m prepared 🤣But life’s messy. Parenting is colorful. But I see a pretty clear path when it comes to my older kids. Lots of the choices I make for them are either black or white. And sometimes grey. But not that often. But being Elle’s mom…it’s plunged me into a perpetual life of grey. Good bye are the days of black and white. I’m no longer living with happy days always with a sad one sprinkled in. I’ve been super fortunate in life to not carry a deep grief. Trauma, yes. But grief? No. Let me tell you guys, grief and gratitude consistently living inside of me, it’s fucking grey. It’s murky. I can be the happiest human with so much hope on a Tuesday, then on Wednesday I feel like my world is just crumbling. Is this why I’m always so tired?!🤣🤣🤣 Here’s the thing though. Here’s what shifted my life in a way to where I knew I’d be ok. And happy. The Grief will never disappear- I just needed to learn that they can coexist. Once I heard that- I actually felt myself lighten. Like holy shit. This whole time I’ve been waiting for this grief to go away. At some point Sadie, you have to stop grieving. Get your shit together man. It has to go away right? You have to be stronger than this grief and overcome it. It can’t consume you. I will do so much self work to make this grief go away. They do say when your child gets a diagnosis, it’s good to have a grieving period. Why the hell hasn’t mine ended?! For me- I honestly don’t know if it ever will. And that’s ok I’ve recently realized. I am positive now that they can coexist inside of me. And I’m trying to figure out how that can happen in a healthy manner. Grief never gets lighter, your ass just gets stronger. YOU WILL GET STRONGER. I will get stronger. There’s just no other option.

I feel like it’s a constant wave of grief then gratitude. Or vice versa. Just smashing into me at any moment. Please tell me other special needs parents out there experience this and I’m not crazy or alone? The Autism…. It’s getting easier for me to manage and accept. But now we are in this grey area of her intellectual disability coming up and creeping in. What’s being impacted by her autism? What’s being impacted by her intellectually disability? And what’s being impacted by her brain tumors and dormant part of her brain that they exist in? The Grey is a dark place to wander for me. I also have no info on ID (intellectual disability disorder). I don’t know anyone with it. I have a tribe of autism parents. I have zero with this diagnosis. No professionals around to help guide us. I finally feel ready to dive in and found some Facebook groups and joined them. It’s pretty daunting honestly. If you experience this diagnosis, or have resources to share- I’d really love to hear from you.

Gratitude. I’m fucking full of it. Today, we spent the afternoon at the river with another family. And Elle rocked it. We all relaxed. Enjoyed the sunshine. I just kept looking around and thinking, we are so damn blessed. This day is perfect and EASY. Days don’t often feel easy. The family we were with, just get it…And I was sitting with my friend, all of the kids were in the water with our husbands and I wanted to cry. I was so grateful for being there and just simply existing. I know I talk so much about the heaviness…. But I truly feel like not many people openly talk about the looming darkness that special needs parenting brings. But there really is so much beauty still. So much. I also have so much hope that she may blow us all away and go so much further in life then I can even dream. Elle is so happy. She truly lives her best life. And I think that I get to enjoy these bright days even more when we have them. We’ve been having more beautiful moments than ever before, and it feels…. Well it feels fucking beautiful. I literally audibly sighed today. A sigh of, “Holy shit, we are having a great family day and we are all able to relax and fully enjoy.” It’s a little more rare for my family to do that. Experience that. And when we do, it feels damn magical.

With all of that being unloaded and said, there’s real power in human connection. Real, deep, raw, authentic human connection. It’s rare. It’s needed for survival. And I hope that I can inspire people to feel all of these things, and talk about them. To find your people.

My next post will be about all the thing I do to survive, mildly thrive as my girlfriend and I call it. My Elle has changed me in a way I didn’t know I could. Changed me in a way I didn’t know I needed. My entire family, they are fucking magic because of Elle. Well, they were magic before Elle, but she just made everyone that much better. I’ve really learned that it’s detrimental to survival to get out and do things. The selfish me time is a must. The stigma around that is total crap by the way….. but that’s for another day 🩷

Thank you all so much for reading this one to the end. And continuing to read what I’m putting out into the universe. I can’t even begin to describe my gratitude for you all. Life isn’t always bright and shiny, but it’s always a blessing and I’m so incredibly grateful for this life 🩷