Couldn’t help but laugh leaving him to play Tetris with a shipment & a half of formula in my already jam-packed room 😂 He’s a trooper, this guy!!
Not all superheroes wear capes. Sometimes they look like tired parents in flip flops, perched in uncomfortable armchairs. A constant in the storm, a comrade in battle, hand-in-hand, never wavering. Clothed in strength, patience, determination, faith & unconditional love.. ❤
I had the BEST time with these lovely ladies today! I cannot even begin to express how needed this get-together was…not just for me, but for all of us. Spending time with people who truly get it– talking, laughing, commiserating, joking, and just BEING, no strings attached– is truly the best medicine. No one flinched when someone whipped out a nebulizer or strapped on a neck brace or flushed their port or tripped over their tubing. Laughing, we raced up to help each other (usually just adding to the chaos…lol, but the thought was there). It was the first time in a long time I felt genuinely happy.. ❤
If I’m the one on narcotics…why is it that she’s the one who looks stoned? Lol. Appointments with my mom are always entertaining, to say the least 🙂
I had a great time with my youngest sister yesterday! We haven’t gotten to spend much quality time together since my family was torn apart in 2012…but recently we’ve been bonding– amidst and despite our family’s dysfunction– and I can’t even tell you how much its meant to me. We had a really cool conversation around 2am. It started when she asked about my feeding tube. Not in an “ew gross” or otherwise insulting way, but she genuinely wanted to know what “happened” and why I went from being a healthy, normal kid to a sick teen/adult. She asked about the ins and outs of Ehlers-Danlos Syndrome and how it affected/will continue to affect my life. The whole conversation, never once did she make a judgmental remark or tell me to stop talking. Despite living with me for extended periods since I became sick, she honestly did not know much of anything about my illnesses until that point, and it was truly a sweet and special moment for me…although that may sound weird to some. Prior to recent weeks she and my other sister Kerian have had nothing but nasty, degrading comments, spoken with the intent to hurt me. And they’ve succeeded. Both can be incredibly mean-hearted and they know how to be manipulative and hit a person where it hurts (especially Keri). But this conversation with Bre tonight, plus all the fun we’ve had lately talking and joking, driving around, swinging at the park, watching Supernatural, and just being sisters has my heart so full: I cannot help but feel cautiously hopeful. I find myself praying and pleading with God that this lasts. Regardless, I am thankful for these past weeks and I love my lil ginger sis.. ❤
I cannot believe I graduated high school 4 years ago. Wow. Feels like lifetimes ago & yet just yesterday in so many ways. Looking back on pictures always fills me with an almost-suffocating sense of nostalgia and…well…emotion, I guess. Not happiness or even sadness, per se, but an overwhelming feeling that I cannot quite seem to name. Looking at this picture, I am taken right back to that day– I experience the memories with all of my senses– & I am left feeling hollow yet full to the brim, tears streaming down my cheeks & smiling all at the same time…
Just realized I never shared this! Check out my amazing spoonie sister Em’s blog post about our experience attending Duke Children’s Hospital Prom…and all that went on ‘behind the scenes’ to prepare and recuperate… 🙂
Last Saturday (April 22nd) Duke Children’s Hospital held their very first PROM! I had the amazing opportunity to not only attend but I got to attend with 3 fantastic ladies that I have gotten to know over the last year online! We share quite the list of medical diagnosis’ and life experiences.
Prom prep started about a week before the actual prom. Cancelling doctors appointments, scheduling doctors appointments, ER visits, lots of medicine, and rest rest rest!
Pre-prom prep (IV fluids, Nutrition, pain meds, steroids and prayer!)
While we got ready for prom before getting our dresses on and doing our make-up we pre-medicated and talked about how much we get it. There was no need to explain anything or feel ashamed because they live it too! (Though I so wish none of us had to, it’s nice to not feel so alone).
We all meet online in…
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Had an AMAZING night at Duke Children’s Prom with my incredible spoonie sisters, Nicole, Em, & Kayla! We’ve been talking online via Instagram & FB support groups for over a year now, but this was the first time we all got to meet up together in person!! It was truly awesome. It was such a blessing to talk, laugh, dance, and just be weird together! Love these beautiful ladies so, so much.. ❤
Messages from my sweet best friend remind me why I keep fighting through nights like these. Love this girl more than words could ever express. Through it all, she gives the best pep talks & is always there to hold me, dry my tears, make me laugh, & fight right along side me. I am so, so incredibly blessed… ❤