Gracie's Gowns

@graciesgowns | partner
Our mission at Gracie’s Gowns is to provide children that are chronically ill with something fun and personal to wear while staying in the hospital or undergoing therapies and treatments in which they are not able to wear their own clothing.  
Hannah Wingert

A Letter to the Mom Whose Child Just Got a Feeding Tube

To the mom whose child just got a feeding tube, Right now, you’re probably pretty overwhelmed. You’ve just been thrown into a world you never expected to be a part of, and that can be scary. There are tubes and syringes, feeding schedules and pumps, and possibly a stoma if a G, GJ, or J tube is involved. I’m not going to tell you it will all be easy. There can be both emotional and practical challenges. But it can get easier. The first month or so after your child gets their feeding tube can be hard because you’re still getting used to everything. But for me, it soon became second nature, and I got into a rhythm with the feeding process. In my experience, the person who is sometimes hardest on you throughout your journey is you. Give yourself grace. Process what you and your child are going through when you need to, but then get back up and keep going. If mom-guilt starts to creep up on you, remember this: you are doing what is best for your child. Try not to worry about all the things that could happen, like granulation tissue or accidental tube pullouts. Take each day as it comes and deal with each issue as it pops up. Educate yourself. Learn as much as you can about tube feeding and your child’s condition, if you know what it is. You’re a medical mom now, and you’ll manage your new normal much better if you’re prepared and organized. Don’t be embarrassed by the stares and questions you’ll get from (hopefully) well-meaning friends, relatives, and even strangers. Smile back or use the moment to educate someone who doesn’t know about feeding tubes. Find your tribe. You are going to need support and understanding from people who are on a similar path as you. You’re going through a unique experience most people aren’t going to be able to understand. Talk to your friends and family about what you’re going through. Don’t close yourself off from a potentially valuable support system. They may not understand everything, but there’s a good chance they want to support you any way they can. Take a deep breath. You’ve got this, momma. Follow this journey on Sunshine and Spoons. We want to hear your story. Become a Mighty contributor here.

Hannah Wingert

Common Symptoms of Ehlers-Danlos Syndrome

After three of my kids and I were diagnosed with Ehlers-Danlos syndrome type III (hypermobility), I knew that I had to instill a good attitude about it in my children so they wouldn’t grow up bitter about their condition. What better way to do that then to laugh about it? So, for my kids (and all you other zebras out there!), you know you have Ehlers-Danlos syndrome when… 1. Your joints go out more than you do. 2. You snap, crackle and pop just like your favorite breakfast cereal. 3. You spend 15 minutes drooling over all the braces in the pharmacy department at Walmart. 4. You visit the local nursing home and find yourself jealous of the residents’ tricked out walkers. 5. You can dislocate or sublux a joint while just sitting there doing nothing. 6. You can dislocate your thumb by pulling up your sock. 7. The ER doctor has to ask how to spell your disease and then Googles it. 8. Your geneticist uses you to teach other doctors how to run the Beighton scale on patients and diagnose EDS. 9. You have to pop a few joints back into place when you wake up in the morning. 10. You have “brace lines” instead of regular tan lines. 11. You can only regulate your body temperature about as well as a newborn. 12. Brain fog means that you have to write down everything. 13. Your 2-year-old gently touching your leg can make your eyes well up with pain because your entire body feels like an intense bruise. 14. An itch on your back is never a problem because no matter where it is, you can reach it. 15. Your friends look at you like you’re speaking another language when you rattle off big words like “Ehlers-Danlos syndrome” “Eosinophilic Esophagitis” and “Postural Orthostatic Tachycardia Syndrome.” 16. You live in fear that you’ll get pulled over and have to take a field sobriety test because there’s no way you’re capable of walking a straight line. 17. You’ve ever heard “it’s all in your head.” 18. A trip to the dentist means your jaw will be at least partially dislocated and sore for a while. 19. You’re obsessed with anything that’s zebra print! We want to hear your story. Become a Mighty contributor here .