I have this weird sense of memory. Well memories and trauma. I’m sure many others do as well. Certain smells, holidays, events, bring you right back to that moment. It’s like time traveling and in those moments I feel everything so deeply and just like Im living it for the first time. It’s Both a blessing and a curse and so many days I wish I could turn it off. I either remember it all or absolutely nothing. That’s what fair week has been for me this week. Hell thats what driving the backroad to my doctors office every time is. This time last year we were two weeks out of our first hospitalization for staph, having the time of our lives with our favorite people at everyone’s favorite fair. Since I was a little girl I have loved the Dekalb County free fall fair. Junk food, rides, and games. It doesn’t get much better! Having babies made it that much more fun. But this year it’s made me feel uneasy and a little weak in the knees. My anxiety has been at an all time high and all the dark and scary floods my thoughts. I cried driving there thinking about last year. Remembering how red Haven’s entire body was the whole time and how I had text her original doctor Saying something was wrong. Only to get back a “she’s fine, we will see her next week” (Looking back at the pictures from last year she looks so sick 😭) Remembering the screams coming from my child that night afterwards. Screams I hadn’t heard even when they removed her brain, skull, and spine. Screams that still haunt me. Rushing to our pediatrician only to be rushed to the ICU. (I thank God daily for Haven’s medical team, they undoubtedly saved her life) Remembering waiting for them to get an ambulance out of the fair to drive my very ill baby to Riley’s. I don’t think fair week will ever be the same for me. That week changed my entire views on life, those around me, and the God we so desperately pray to when your world comes crashing around you. 

Haven and I have been through the ringer. This blonde haired, blue eyed, bluntly honest tiny human has completely reshaped who I am as a woman, mother, and friend. The person I was before her is non existent. From her Autism Diagnosis, multiple surgeries, to a 12 day stay for Brain surgery and Chemical Meningitis. A bunch of pretty dark and scary that at times felt like it broke me, still nothing prepared me for our battle with staph. Nothing prepared me for watching my sweet baby I have fought so damn hard for deteriorate in front of my eyes. Nothing prepared me for getting in an ambulance and telling my momma I didn’t think I’d bring my baby back home. Nothing prepared me for her entire body burning and peeling. All the pain and trauma I’ve endured. All the trials and tribulations Haven and I have been through together and that week was still a shock like no other. A year later and it still floods my nightmares, it’s unshakable. I know we both have a steady dose of PTSD. It comes in waves. There’s days Havey says to me “momma remember when I almost died” Every day sweet girl, Every. Single. Day. Some days it eats me alive, someday’s I feel myself gaining on it, but every day it’s still there.  Even still we put our happy faces on and the girls had a blast at the fair. We ate junk food, they rode every ride as many times as possible, and won the worlds most annoying toys at the rip off games. We all began to heal a little. One successful, grease fueled fair night at a time.  

Today Havey and I went on a long walk, we talked about all she’s been through, about staph and her soft melon and why life is a little different for her. We walked to the park and dinner, came home and painted her not burning and peeling (but very bruised) sweet baby toes. I swear I cried every stop we made tonight and the entire time painting her toes. I probably will every day for the rest of the week. I am just so so thankful the Lord let me keep my girl. All the little things seem so big in these moments.

“Find your tribe, love them hard.” I’m forever thankful for the Matilda Jane mommas that carried us in every way possible and to my friends and family who were and still are our saving grace in the dark and scary times. Life with Haven being both medically fragile and special needs will never be easy but is always so SO worth it. Hug your babies y’all. Hug them tight ❤️

xoxo Taylor