11/11/2025
I’m okay. She’s okay. We’re okay. I’m just quiet. I’m in a phase of being intentional. Intentional of how my time is spent. Where my focus is. Who I am present for. What I share. When to step back and create boundaries. Why I make the choices I do. This journey has taught me that the world surrounding me does not matter, but the people surrounding me do. I’ve been pulled from things that were draining me, and I didn’t even realize. Sharing every little detail on social media, and for what? Do the likes and comments change the situations? Not at all. And while each and every prayer means more to us than I could ever express, the expectancy of keeping the world updated on every change, good or bad, was just completely exhausting. Some days, it’s too much for ME to handle, and I am her mom. I don’t have it in me to come on this little app day after day or multiple times a day to provide up to the minute reports. If it’s negative news or changes, I need a minute to soak it in. To absorb another blow. To gather my footing so we can face this battle head on again. Because giving up or giving in is not in our vocabulary. If its good news, then again, we want to soak every single second of that in. We want to feel every ounce or positivity, and do our best not to highlight the negative. My first inclination isn’t to run to social media, and I am sorry if you dont understand that. When Kinlee was first born, I made the decision not to tell people for a few weeks. I didnt want to share her. I didn’t want to miss anything. I am in the same space now. Until my last breath or hers, we will never take this lying down. We know what we are up against. I don’t need reminders from the outside world. I look it in the eyes every single day. We are coming up on 11 months post diagnosis. They didn’t think we would get here. Some days, I didn’t either. We have come to know several families on this journey, and sometimes getting online and seeing the overwhelming amount of posts of loss or progression or hopelessness is too much for me. I will NEVER judge someone for how or what they share because people have to do what works for them. But not everyone is the same. It doesn’t mean our journey is easier or that we are fighting or advocating any less. We are just very intentional. I’m constantly in correspondence with our medical team as well as others about treatment possibilities. I’m working with an investigative reporter right now doing an interest piece on Kinlee and how the funding cuts have affected us and our journey. I’m involved in a small, select group of parents corresponding with Senators. There are so many things going on in the background that I don’t lay out on the table, but I have to do what is necessary for maintaining a healthy mind space for myself. I’m not in the mood for being overly social. I’m not texting every five minutes. I’m not making plans to be everywhere with everyone. And I know that people who TRULY know me recognize and respect that. So, if you’re messaging me and you see they’re read, but I don’t respond, don’t take it personally. I’ll get around to it. Some days, it’s all I can do to get up and brush my teeth. Then I put on my Super Mom costume because that’s what Kinlee needs, and I will never give her anything less. No matter how much I’m dying or falling apart on the inside. She loves getting mail, and appreciates ALL of the goodies you all shower her with! Her Princess Barbie collection is almost complete, her Amazon list is dwindling down, she has an insane amount of Cinderella and Stitch now, we are still overrun with blankets, and she’s developed a new loves for Disney pins and Loungefly backpacks lol. She is blessed beyond measure, and loved just as much, and we know that. SHE knows that. So days when my girl says, “Mama, can we just lay today?” that is exactly what we will do.
