02/28/2026
It’s RARE DISEASE DAY !!! 🦓
While I’m shouting, it’s not from happiness, excitement, or being eager. We’re still reaching for that cure. We’re still shouting for a cure. Emailing. Advocating. And sharing stories, not for clout, not for fear, but for those real, raw moments that aren’t always seen with a rare disease. The behind the scenes.
But, that’s also scary. Trying to capture the moments, but also trying to live in them too. We can capture some scary moments, some of those grieving moments of uncertainty. When you have one child battling a terminal diagnosis, it really changes you, but just 2 months later receiving that second diagnosis. Everything inside me changed.
TWO of your FOUR children were given a TERMINAL diagnosis. No cure. Since 2023 we’ve been grieving the what was, what was supposed to be, and what it is now. We moved into our “American dream” family home in 2021. We bought the car that should be perfect for our family, shortly after that. Now, struggling to survive on one income, & so I’ve picked back up work. It’s the things behind the scenes that are “invisible”. The things people don’t think about.
Diapers for an almost 6 year old (of which we’re still on the waiting list to receive Medicaid) our 3yr old also in diapers. Both of which won’t potty train. Baby wipes. Medication coverage. Handicap accessible everywhere at the tip of our life, it will all be needed soon. There are far too many costs that aren’t seen, unless you’re inside. The invisible parts that aren’t talked about out loud, or seen. When you donate to rare families like ours, you’re donating to save a life. No matter which way you look at it. We’re living the unimaginable, and think about how each family and their dynamics had to change. How much had to change. How much had to really change, and will keep changing. Keep adapting.
We will never give up. We will never stop fighting. We will never stop advocating. We will never stop giving them the life they deserve. We will always make the best choice, in every situation.
I’ll never stop questioning how or why we got here. Why people leave you in the most critical moments, when you needed them the most. Just an ear. Just a friend. Just your family member. We know there’s nothing you can say, but simply “I’m thinking of you all” really goes a long way with us.
The grief is heavy everyday. It’s how we carry it, that gives its looks. I know I can be back & forth — but that’s anticipatory grief. The high highs, and the low lows. Looking at the beautiful sky, thinking how blessed we all are to see that. BUT then I think. Brody can’t even see this.
That’s a hurt I will NEVER be able to explain. Don’t get me started on Briggs. Their graduations. All of them. 16th birthday. Heck even the birthdays without them prior and after. The bf & gf time. 21st bday. Marriage. Kids. Grandkids. All of it. We have to think about things no parent should ever have to think about. Every. Single. Day.
Please don’t stop fighting. Please don’t think bc you don’t see a post from me that we’re not going through it. That something isn’t happening. They (& we) are fighting like he77 everyday. Fighting to hold my babies just another day longer than they’re given. Hold them where they are now, not what Batten Disease leaves us withh💔🙏🏼❤️🩹😭
Look at them both. Still happy. Smiling. Living a good life. 🙏🏼😭❤️🩹
