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Continue ShoppingJuly 2012 - The Jordan Family, Fort Worth, TX
Hello 3E Lovers!
Welcome to our second edition of 3E Lover of the Month! Last month you met Maria, and now I would like to introduce you to a family I met in Houston last year. Their story touched me and was a reminder of the impact of the wheelchair heart symbol.
Meet Curtis and the Jordan Family!
3E Stevie: Hello 3E Lovers! Today I am with Curtis Jordan from Fort Worth, Texas. We have selected his family as the 3E Lovers of the Month and I'm very excited to share their story with you! Curtis, thank you for agreeing to this interview. How are you today?
Curtis: Good how are you?
3E Stevie: I am happy to be loving life today on the 4th of July! So, I want to tell the world your story because I was very touched when I met you and you explained to me what the symbol meant to you. Before we get to that, let's talk about the basics! Who are you? Where are you from? What is your connection to the world of disability?
Curtis: We are from Fort Worth and our son Wade was born with Cerebral Palsy.
3E Stevie: Is he your only child? For those that are reading who might not know, could you tell me more about Cerebral Palsy and how it affects your son's daily life?
Curtis: Wade was induced at 41 weeks. Due to a very traumatic and complicated delivery, Wade experienced a lack of oxygen during
birth--hypoxic ischemic encephalopathy--which caused brain damage, resulting in the diagnosis of Cerebral Palsy. Cerebral Palsy looks different in everyone. It's basically an umbrella term that covers brain and nervous system functions. There are several different types of Cerebral Palsy, and Wade's "official" diagnosis is spastic quadriplegia; meaning both arms and legs are affected, as well as the trunk of his body and the muscles controlling his mouth. Wade uses a wheelchair for mobility and he is learning to use the Tobii eye gaze system for communication. Wade needs a lot of supports throughout his day to do even simple activities such as eating, drinking, and playing. However, these things do not stop him from enjoying and experiencing life like every other five-year-old.
birth--hypoxic ischemic encephalopathy--which caused brain damage, resulting in the diagnosis of Cerebral Palsy. Cerebral Palsy looks different in everyone. It's basically an umbrella term that covers brain and nervous system functions. There are several different types of Cerebral Palsy, and Wade's "official" diagnosis is spastic quadriplegia; meaning both arms and legs are affected, as well as the trunk of his body and the muscles controlling his mouth. Wade uses a wheelchair for mobility and he is learning to use the Tobii eye gaze system for communication. Wade needs a lot of supports throughout his day to do even simple activities such as eating, drinking, and playing. However, these things do not stop him from enjoying and experiencing life like every other five-year-old. 3E Stevie: Thanks for telling me more about Wade! What was it like being a young person and having a first child with a disability? Was it difficult?
Curtis: Though this is Jenny's first child, I have an 11 year old son from a previous marriage. Of course our world was turned upside down in the beginning. Jenny had a "perfect", full term pregnancy. No one really tells you what could potentially go wrong during delivery; we were a bit naive. At the time, Jenny was a special education teacher, so we did have a little bit of knowledge about kids with disabilities. But the first couple of years were rough; we had to grieve the loss of what we thought our lives were going to be like. As a dad, I had all these visions of playing ball with my son and hunting and fishing. It took me awhile to realize that we can still do those things together, it's just going to look a little different than what I originally thought. I eventually came to understand that what was holding Wade back were the voices in my head telling me that he would never do the things that a typical child could. I put an emotional fence around him to protect us from his disability. If I kept telling myself that he would never be able to do certain things, it wouldn’t hurt as much when we didn’t get to do them, and therefore we wouldn’t even have to try. I failed Wade by not letting him tell me what he could and couldn’t do. I was the one in his way. I was the one holding him back. I was the one trying to protect him instead of allowing him to succeed in life through his trials. We all fail at things. There will always be things in life that he is not going to be the best at. There will always be things that he may never be able to do. But standing in his way is not doing anything but holding him back. Yes, it's been difficult, but the main thing I've learned is to get out of Wade's way! Get behind him instead of in front of him; push him to be the best at whatever it is that he wants to do in life.
3E Stevie: I love your positive attitude. It sounds as if you went through some challenging times accepting your son's disability and now fully embracing it, enough to wear our t-shirts proudly! What does the wheelchair heart symbol mean to you and your family?Curtis: The wheelchair heart symbol just "spoke" to my wife and me; enough so that she got her first and only tattoo! I then got the tattoo on my upper arm; it's a great conversation starter. It gives me the opportunity to educate others and let them know that Wade's disability isn't this awful thing that happened to us. We're not looking for pity, we're looking for support and acceptance. The symbol seems to unite us and gives us the strength to keep fighting the fight and advocating for equal rights for people with disabilities. Seeing family and friends wearing 3E Love t-shirts is pretty amazing because they're wearing them out of love for Wade.
3E Stevie: It's awesome to hear how much the symbol has become a part of others' lives like your family's. Thank you so much for telling me about your journey of acceptance and about your son.
Curtis: Thank you for sharing the symbol that your sister created with the world. We love spreading awareness, and 3E Love makes it so easy to do!
3E Stevie: Looking forward to posting this and hoping we can meet up in-person again one day! Thanks, Curtis!
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Brenda Cook
Sep 07, 2012
Inspiring story! My daughter Kendall also has spastic qaud CP. She is our little angel & brings joy to our life as well as the world. She was born at 26 weeks and weighed only 1.7 lbs. Now she is 10 & much like a typical girl her age. She is small and mighty! Thanks to the Jordan family for sharing your story & to 3E!
Katherine Hayward
Aug 04, 2012
Hi, i’m from England, but live in Spain. I’m 30 and have the same diagnosis as Wade. I aso have hydrocephalus with a shunt that was changed on numerous ocasions. I’m blind and use an electric wheelchair to get around . I was born at 29 weeks also in a complicated delivery and my twin Sister passed away 9 days after our birth. despite all this I also have a positive outlook on life. It’s hard, but live every moment to the fullest you possibly can. I can tell you’re a very close family. Cherish every moment with Wade and live your dreams and help and encourage him to live his. My family went through the same as you did at first and are still struggling. I find signing up to forums, disability magazine subscriptions and going to disability events is really helpful. Also find a doctor and specialist you really trust and who know what they are talking about. I’m not sure really what organizations are out there for you in the USA, but at least this is a starting point. By the way the tshirts look really cool too
I’d be glad to assist and advise more if you’d like.
All the best, Katherine
christina
Jul 23, 2012
what a great story. very loving and supporting family. who faced challenges but took them made postivited outlook from it. <3
Elizabeth
Jul 19, 2012
What a great story with a powerful message. Every time I read the Lover if the Month, I am more inspired to help more kids and educate people about disability awareness and the 3E Love mission ;) Keep up the great work!!