It’s Friyay! While you’re getting ready for a relaxing weekend, we’re here at Chronic Coffee Chat sipping coffee (or tea, or cocoa, or Diet Coke— whatever floats your boat) and getting to know each other a little better. This week, we’re featuring Hannah of Sunshine and Spoons! I actually featured her shop back in my Valentine’s gift guide, so you may be familiar with her. If not, let’s learn a little more:
My name is Hannah and I’m a wife to one and mom to four little ones, ages 9, 6, 4, and 2. I’m a writer, and I also enjoy reading and sewing. I have Ehlers Danlos Syndrome, asthma, eczema, allergies, POTS, acid reflux disease, Eosinophilic Esophagitis, and PTSD. Three of my kids also have EDS along with an assortment of other diagnoses.
Now that we know a little bit about her and where to find her, let’s get into the questions. Hannah has some really interesting stuff to talk about!
Q: You came about your Ehlers Danlos diagnosis in a really roundabout way. Can you tell us a little bit about that?
Hannah: I’ve always felt that something was wrong with me, but convinced myself that I was just being a wimp. I thought everyone had high pain levels on a daily basis and extreme fatigue, but just dealt with it better than I did. A few years ago, I was talking to my older sister about how awful I felt everyday and she looked at me in shock and said, “I couldn’t live like that.” It was an eye opening moment. My health had been steadily getting worse as I got older and I knew it was time to actively search for a diagnosis. I wrote a 2 page list of all of my symptoms, took it to the doctor, and handed it to her. She looked at it and shook her head in disbelief. She wasn’t even sure where to start so she referred me to neurology. While I was waiting for my appointment, I posted a picture on Instagram of my youngest son’s hypermobile ankle bent up to his leg and someone asked if he had Ehlers Danlos Syndrome. I started researching it and was blown away at how it perfectly described not only his symptoms, but mine as well. He was medically complex and we were desperately looking for a diagnosis for him so at his next appointment with his geneticist, I brought up EDS and it was like a light went on in the room. That summer (2016), his geneticist diagnosed me and my two oldest kids with EDS and informally diagnosed my youngest as well. Since then, I’ve thrown myself into researching this little-known genetic syndrome and working to raise awareness for it. (Here’s my diagnosis post.)
Q: Not only are you a chronically ill mom, you have chronically ill kids. Your house must get really hectic! What would your best advice be for chronically ill parents or those wishing to become parents?
Hannah: Hectic is definitely the right word! With four people in the same family having EDS and many of the other conditions that come along with it, we usually spend 6-15+ days at the clinic each month. That doesn’t include the therapies and care we do at home, plus we have so many medications between us that I feel like I have a pharmacy in my home.
The best advice I can give someone in the same situation is to take it one day at a time and stay organized. I recently designed a special needs medical binder to help me stay on top of everything we have going on and am also selling it in my Etsy shop. Another important thing to remember is to give yourself grace as a parent. It’s hard not being able to be the parent you want to be because of your health, but the guilt can be overwhelming when you add your kids’ own special needs to yours. I wrote a blog post about this subject [here].
You have an Etsy shop. (I’ve been eyeing the “I’m the reason we’re late” onesie for a while now.) How did you get into designing shirts?
Q: I’ve actually had my Etsy shop for about 5 years now, but last year, I completely changed my product line. I used to sew and sell handmade children’s clothes, but with my health declining and our many doctors’ appointments, I no longer had the time or energy to do so. I started researching ways to keep my shop open, but change my product line to a more passive income. My shop is my passion, and I didn’t want to have to close it. I settled on designing shirts and working with a manufacturer to print them. I get to keep my creative juices flowing, but have made my business work better for me and my family. Plus, many of my shirts focus on special needs so I get to help raise awareness for them.
Q: What one message do you hope readers take away from your blog?
Hannah: That having a chronic illness isn’t the end of the world. You just have to change your world a little to make it work for you. I also want to educate “normal” people on what it’s like to have a chronic illness to make this world a better place for my family and for everyone else out there who struggles with their health.
Thanks again to Hannah for joining us here at Chronic Coffee Chat today! (As I understand, Hannah does a bit of a “real life” Coffee Chat with people she knows. What a great way to bond. Head here to find out more.) Anyway, although that’s all we have for the week, don’t forget to check out the #chroniccoffeechat hashtag for bonus info. It’s also the place to be if you want to reach me for questions, comments, or to be featured in a future chat. Have a great weekend!