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.. ❤
In light of everything that has happened this semester, I’ve been working to come up with ways I can make a difference in this world without a college degree. Here are some ideas…
- Become a guardian ad litem
- Establish a restaurant that feeds the homeless
- Foster to adopt medically fragile children & teens
- Fundraise to pay for surgeries for children whose families cannot afford it
- Get my CNA license
- Help runaway teens reunite with their families or become independent/emancipated from them
- Make my home into a shelter for homeless women & children
- Publish book about life hacks for tubies– for tubies by tubies
- Start a nonprofit organization like Chronic Lifestyle Understanding & Education (CLUE)
- Start an orphanage or group home in conjunction with an animal shelter so each child can have a pet
- Start support groups for chronically ill teenagers & young adults
- Throw birthday parties for children in the hospital
- Volunteer and/or work at a nursing home
- Volunteer for Crisis Text Line
- Work as a missionary
To be continued… 🙂
This evening, I finally got to meet my beautiful, sweet, strong spoonie sister Nicole! We’ve ‘followed’ each other & talked online for almost two years now, but we never got to meet in person despite living only a half hour away. She is INCREDIBLE– truly one of the most beautiful souls I’ve ever met. She endures so much each & every day, yet somehow manages to find joy through it all. She is a superhero! She’s been a huge encouragement to me throughout this crazy chronic illness journey. My heart is so full after getting to hug her in person! We literally just hung out on her couch for like three hours, talking, laughing & commiserating about anything & everything. We could just BE- the good, the bad & the ugly- without having to explain ourselves or wear a fake smile. We both needed this so much. I’m beyond excited for our future spoonie adventures! Love this girl SO stinkin much!
Things have been really, really hard lately. Life has thrown me & my family a lot of curveballs, physically, mentally, emotionally & financially. I feel like each day is a battle & I’m constantly struggling to simply keep my head above water. But even through the storm, God’s grace & mercy is unyielding. He sees & loves me where I am, & no matter what, He is still good.. ❤
I love this song so much. It’s 4 chords & is sung mostly in unison– it’s nothing musically significant. It’s repetitive & the words are not eloquent or poetic. It’s inherently simple. And that’s why I love it.
“You’re a good good Father
It’s who You are, it’s who You are, it’s who You are
And I’m loved by You
It’s who I am, it’s who I am, it’s who I am…”
In a world swirling with uncertainty & stress (both good & bad!) it’s easy to let things become overcomplicated & unclear,
This week may have knocked me down, but hope is not lost. I need not seek identity in grades, friends, or health— His love defines me. I am loved, not by any of my own doing, but because He is my Father, and He is good.
His love is not something I have; it’s who I am.
It’s as simple as that… 🙂
This week has been exhausting, disheartening & downright awful…but this girl has been there for me through it all. She has been fighting with me & for me, right by my side. Her unconditional love & support gives me strength. I am so blessed. I love you, Hillary.. ❤
I finally was able to take my BIO 181 final exam today! I feel like I did pretty well, but either way, today was a good day. Dr. Kosal gave me a hug & asked how I was doing…not in that passive, fill-in-the-silence type way most people do…but like she truly cared & wanted to know. It’s funny how such seemingly small acts can make such a huge impact, huh? The past month or two has been beyond crazy, but BIO 181 has been nothing short of a blessing. I usually do not share the ins-and-outs of my struggles with chronic illness, & I NEVER tell people about my family problems…but life happens, & this summer session forced me to open up to Dr. Kosal about both. And I’m honestly glad I did. She has been a huge encouragement to me, & I love & appreciate her so much.. 🙂