Interview of a EDS Parent

So we all know that our parents know best and if you don’t know that yet, you will. It’s no secret that parents are some of the most important people in a child’s life. Parents are there to kiss all the boo-boos and give hugs when you get straight A’s but have you ever thought about how it makes them feel to do all these things? Take a moment and consider how it must feel for them. Now take a moment and consider a parent of a child with EDS. Do you think it is different? I decided I wanted to know.

I wasn’t sure if I would like the answers but I asked anyway. Now, you should know, I have always secretly been afraid that my parents were disappointed with me because I am not capable of everything that everyone else is. Now, I want to make it clear that my parents are very supportive of me and have never given me any reason to feel this way but I have always been afraid of disappointing them. I thought they may think of me as a complainer and whinny but I was pleasantly surprised when I sent a few questions to my dad. The following questions and answered are not altered (other than a few grammar mistakes).

1. Please explain EDS in your own words.

An invisible disease that causes a persons ligaments to stretch but not retract back. It’s like taking a rubber band a continue stretching it out and eventually losing its elasticity.

2. When first diagnosed, were you sad to know that your kid had EDS?
Well of course I was. I didn’t understand exactly what EDS was but I knew it wasn’t good. My niece also has EDS so I knew a little but not enough to know what the future would have in store for my little girl.

3. What is the hardest part of having a kid with EDS?
Watching her not be able to do the things, she loves to do; 1st would be playing soccer, walking without fear of dislocating; having to plan her day by what she feels is the least damaging to her body

4. What is the most rewarding part of having a kid with EDS?
Seeing her will to survive and live her life to the fullest. She is determined that EDS will not define her.

5. What were your initial thoughts about EDS?
Honestly, I didn’t know what to think. I knew our life was about to change.

6. What do you want people to know the most about your kid with EDS/EDS in general?
Here’s what you should know: MY DAUGHTER IS THE STRONGEST YOUNG WOMAN I KNOW. She lives in constant pain. She struggles everyday. BUT SHE WILL NOT GIVE UP!!!! In general, EDS sucks!!! People can’t see what’s wrong with you. They can’t see the pain and frustrations of everyday life. As the old saying goes, “Don’t judge a book by it’s cover!” Just because she has a smile on her face and seems to be happy, you have no idea the pain she is in.

7. After you learned about EDS and what it effects, are you still sad to know that your kid has EDS?
Of course I am. No parent wants to see the kid hurt or struggle. That’s just our human nature.

8. Any comments, you feel need to be shared?
I read this somewhere: There are 2 types of pain: Pain that hurts you and Pain that changes you. I have seen how EDS does both of these. Don’t dwell on what you can’t do. Be happy about what you can do, your Every Day Successes!!!

To my dad, thank you for all that you do for me. I appreciate all the support and help you provide. I don’t know that I would make it through all this without a support system like you. Thank you. I love you.

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