Where are you from tell me a little bit about yourself… – Our family lives in Texas, USA. My husband and I have been married for 14 years, and our two boys are 6, and 8. We home school, which is fun and exciting most days. And we have one dog, a pit bull named Chevy, who is the greatest dog ever.
What is your name, age, and disease/invisible illness/mental health? So, I’m Jamie 37 mom and I have PMDD, then there is my husband James 37 who has a mild case of EDS, Seth is 8, he has EDS, Autism and AAOCA and Sebastian is 6 and he has EDS; that really affects him.
When did life change for you? Life changed for our family May 2016. Sebastian had already been experiencing pain but we didn’t know what was going on. In May, he was sent to the ER, with tingles and pain in his neck, arms and hands. From there we got sent to a rheumatologist and received our diagnosis of Ehlers Danlos Syndrome. After that they requested my sons have echocardiograms, and then it got worse, we found a hidden defect in my oldest son’s heart. That requires surgery.
What was life like before diagnosis? It was normal! It was easy. And to be honest there are days I long to go back to them! We played, hung out, took trips, the kids played without worrying and we laughed when my son rolled himself into a ball or squished himself into a box for fun.
How has your diagnosis changed your life? It’s stressful and complicated, Sebastian sees 4 specialists, he is on nerve medication at age 6! He hurt himself going down a slide. He hesitates to play and join in activities that other kids his age jump at the chance for. Our weeks are full of therapy and nights full of medications and topical rubs. Seth is limited not only because the EDS but because of his heart, he is not allowed to play sports, or run. And he wants to run! He wants to be as fast as Flash. BUT, I’m thankful for it. Without we wouldn’t have answers, Sebastian wouldn’t have been in PT for over a year and made so much progress. Seth’s heart defect wouldn’t have been found and he could have been taken from us. So as hard as it is, I’m thankful we found out.
Please describe the best you can a day in the life of you?
Our day is dependent on the night before. If Sebastian didn’t sleep well, we are all kind of groggy. Because we homeschool we wake up when the kids are ready. Slowly, if Sebastian’s body doesn’t have time to “warm up” his pain is amplified. We start with gentle rubs and stretches and then once he’s up we have breakfast. After, we start school and the kids learn and play inside and out. We have several different sensory swings, and equipment that we use. Gentle exercise and Pt at home, unless it’s a therapy day. Therapy Days start at 9:30 we leave the house and drive 1.5 hours to get to the facility. then it’s therapy from 11:30 to 6:00 and then the drive home.
By the afternoon Sebastian is worn out and usually laying on the couch, Seth is not effected the same as Sebastian so he is usually in his room playing. After dinner it’s bath time, time for medicine and night time rubs.
Hopefully Sebastian sleeps well, otherwise he wakes several times with pain in his legs and back or tingles down his arms and hands.
What was/is the most challenging thing you have faced because of your diagnosis?
As a parent, I think the most challenging thing is just trying to get everyone to understand. We got lucky with Doctors and have had good experiences. It’s other people that see the kids play (on good days) that think there is no way they could have issues. It’s been hard getting people to understand that not all disabilities are visible. My kids have been called lairs and they’ve been pushed beyond their limits because a stranger or friend doesn’t believe them. I’ve learned to be a pretty good Mama bear since first being diagnosed
Do you find that you can keep up with others?
My husband is pretty mildly effected and he does a good job at keeping up, Sebastian has trouble with this and he is limited, but that doesn’t stop him from trying his best. Seth is only limited by heart, his is also mild and he rally pushes himself.
What would you tell others living with your diagnosis?
We get it, and I know what works for us may not work for you but we will be there for you. Don’t be afraid to stand up for yourself or others.
What would you like to tell others that don’t live with a similar diagnosis?
support us, rather than tell us how sorry you are. Support comes in many different ways. Listening, helping where you can, believing us, spreading awareness with us, those things matter most
What have you learnt on your journey? For me personally I have a unique perspective, my mom has chronic pain, and now my children, I’ve learned to not take things for granted, I’ve learned to stand up for myself and, my kids and realize I don’t have to please everyone. And not everyone deserves a place in our life and that’s ok.
Is there anything you would like to add about your journey? My kids are fighters and I hope that I have instilled in them the strengthen and courage to continue to fight. I know that it’s a long road ahead but we are ready. We’ll get through it together. A little Zebra Herd.
Follow their journey on Facebook here https://www.facebook.com/mysweetzebras