Last week was insane, appointment after appointment, therapy after therapy, in addition to the usual we met with Havens Geneticist and she also had her Special Education testing. On top of all that Mia has started t-ball, had her first game, and her preschool graduation. Weeks like that leave me in a fog. Almost like being hungover, you never know if your up or down, coming or going. You just hold on for dear life. Just keep swimming. 

Last week wasn’t just hard in the demanding and exhausting sort of way, it was heartbreaking for me. A punch in the stomach moment. All week I looked forward to Mia’s graduation, we talked about it every day, she wore her perfect match red, white, and blue MJ Romper (the theme was Yankee Doodle) she was so excited to blow her trumpet, and sing her songs. I was SO excited to get to enjoy my sweet girl for awhile. Most of our days revolve around Haven, she requires a lot, and Mia deals with it the best she can, she deserved a night to be the center of attention. 

I arrived with my mom, armed with snacks for the hurricane and flowers for the graduate. We took our front row seats that Adams parents so graciously saved for us and out marched the line of graduates singing theirs songs, grinning ear to ear, and as fast as they came out is about the same speed Haven completely lost her shit. I knew from the sound of her scream it was over, it was all too much. When she hits her maximum threshold, it’s a point of no return, there’s no coming back. 100 people packed in a 100 degree room, it was so loud, the kids had hats that she fixated on and had to have, she just couldn’t take it. So I took her outside, she literally clawed at the door to get back in, we went in and the screaming started again. It was like she wanted to be in there but she just physically and mentally couldn’t handle it. So I sat outside with her, as she violently screamed and tantrumed to the point of hives, all while I sobbed as I listened to my sweet girl sing inside. I was so mad, it wasn’t fair. I was angry with Haven, why couldn’t she pick another day, any other day?! Then I was mad at myself for being mad at Haven. I really don’t think she could help it, but it wasn’t fair to Mia or me. I was mad at everyone inside that got to watch, that was MY baby, it wasn’t fair. I was mad that no one could help with Haven, my momma tried but she was so gone by then. Honestly in the moment I hated everyone else, and everything and then I hated myself for it. I missed everything, her songs, her part in the program, getting her diploma, everything. And the first thing she said to me was momma you missed everything, and I hated myself again. I’m still mad, I can’t think about it without crying. I cried the entire night that night while Mia sat in my lap telling me it was okay, there would be more programs. I told my mom as we were leaving that I didn’t think they could fix that part of Haven, it was SO bad, how’s that ever just going to go away? How am I going to live the rest of my life with days that are this bad? Many days I struggle with this life, days like that anger consumes me more than I’d like to admit, or maybe jealousy. Whatever it is I hate it. I don’t like to feel that way, I have worked so hard to have a calm and peaceful heart and lately I feel like it’s gone. I’m irritatable and anxious. I beat myself up continuously about days like that and the times I loose my patience with the girls. The closer we get to Havens surgery date, the worse it gets. I just don’t feel like a good momma lately. 

Today at my endocrinologist appointment I talked with my Dr about it. I told him maybe I needed some daily anxiety meds, that I hated how I felt lately, and feel guilty that I’m not being the best mom I can be. Here’s what he said to me: “You Echo the words of my wife, who homeschools our four children, many days she goes to bed feeling the way you do. You are doing a great job, the fact that you worry so much about that speaks for itself. It’s the parents that don’t worry about how they are treating their kids I worry about. Cut yourself some slack” He proceded to tell me that I was allowed to be anxious, we have big scary things happening, and my job is hard. I needed that today. I needed to hear it’s okay to fall short somedays, my babies will still love me. I cannot always be perfect, we as mothers cannot always be perfect. We are all trying so hard to do everything right we loose our minds. It’s okay to cry, to loose our cool for a minute, to drink wine for dinner and eat chocolate In our closests while we (temporarily) dislike everyone. We do what we have to do to survive. 

xoxo Taylor 

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