Friday, December 02, 2016

Special Needs Spotligt || Hannah, Katie, Nano and Davy



Miggy: Welcome Hannah! I'm so happy to have you here today to share not just your child's story with us, but your children's and yours, as 3 of your 4 children and you, have all been diagnosed with Ehlers-Danlos Syndrome. Let’s start at the beginning. When did you first start to notice these symptoms and in what child first? How long was it from first signs and symptoms to actual diagnosis? Do you remember how you felt when you actually got the diagnosis? Can you compare those first thoughts and feelings with how you feel now?

Hannah: If we were to go back to the very beginning, we'd have to start with me :) I've had weird, unexplained symptoms my whole life of pain, fatigue, GI issues, heat intolerance, etc. I'd asked many doctors about my symptoms but none had ever been able to tell me why I had them so I just figured I was a wimp.

When my youngest son, Davy, was born, he had many medical problems and ended up getting a G Tube at the age of 2 months because he wouldn't eat. We went through several round of genetic testing with no answers. Then, we switched healthcare systems and he was diagnosed with an unspecified connective tissue disorder by his new geneticist. A few months later, I posted a picture on Instagram of his hypermobile ankle and someone asked if he had Ehlers-Danlos Syndrome. I started researching it and it all clicked. Not only did it explain his symptoms, but mine as well. At his next genetics appointment, I asked his doctor about it and it was like a light went on in the room. As a result, Davy, two of his older siblings (8 year old Katie and 6 year old Nano), and I were all diagnosed with Ehlers-Danlos Syndrome. 4 year old Anna doesn't appear to have it, but she will be re-evaluated in a few years.

Getting the diagnosis was a life-changing moment. It validated my whole life and I realized that I wasn't just a hypochondriac or a wimp. It truly was the best and worst news of my life. In the 8 months since, I've thrown myself into learning all I can about Ehlers-Danlos Syndrome. There's a constant grieving process that you go through when you learn you have an incurable disease and I've had my ups and downs with that. Not only am I grieving for myself, but for my children as well.



Miggy: As you mentioned, getting a diagnosis of EDS for you and your kids suddenly explained a lot! Will you please educate us on Ehlers-Danlos Syndrome and how it affects you and your family's day-to-day life?


Hannah: Ehlers-Danlos Syndrome is a connective tissue disorder that affects your collagen which is the glue that holds your body together. When that glue is faulty or missing, you literally fall apart from the inside. Because of this, it can affect every part of your body. You can read more about Ehlers-Danlos on my blog here.

Our lives now consist of MANY doctors' appointments (10-15 in an average month), but we're hopeful that things will slow down a bit on that front eventually. My health has been rapidly declining over the last two years and I recently became the not-so-proud owner of a rollater walker. I struggle to keep up with regular household tasks and my family has been stepping in to help me.


Miggy: What are the biggest worries you face for your children in respect to their EDS diagnosis, and yourself for that matter? What are your hopes and dreams for them?

Hannah: As EDS affects each person differently, I don't know exactly what the future holds for my kids. At this point, it appears that both of my sons are more severely affected than my daughter, but I know that that can change. I hope that I can teach my kids not to let their EDS hold them back while taking care of themselves at the same time. EDS is a very misunderstood, little known disorder and so I'm passionate about raising awareness for it among doctors and the general public so that my kids can grow up in a world that understands their limitations and health.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Hannah: I firmly believe in using humor as well! I recently wrote a tongue-in-cheek post about the benefits of having EDS. It never fails to scare people when I casually mention that one of my joints just popped out of place!

Davy had his G Tube removed when he was 18 months old, but that also lead to some funny statements such as "Hang on, I need to vent the baby" and "I need to plug the baby in."


Miggy: Having a disability that isn't visible or even well known can present its own challenges. How can people best approach or respond to your family in terms of EDS? Is there something you wish other people knew so as to avoid awkward or hurtful situations?


Hannah: I want people to understand that I am doing my best to keep up with life, but sometimes I just can't. It's disappointing to me when I miss out on things due to my EDS and having people tell me that I need to "get out more" isn't helpful at all. My kids and I may look perfectly healthy on the outside, but we have chronic pain and we just can't do everything that other people can.



Miggy: If you could say something to the mom who just starting on an EDS journey, what would you say? What would you say to yourself if you could go back in time, both for your children and in your own life?

Hannah: To someone who's just been diagnosed, I would encourage them to join a few of the many Ehlers-Danlos support groups on Facebook. EDS is a very lonely disorder as many people have never even heard of it and a lot of doctors don't know much about it. Isolation will just make things worse.

If I could go back in time, I would be more careful with my joints and take better care of myself as I probably wouldn't be in as bad of shape as I am now if I had. As my kids are young, there's not much I would change about their journeys so far, but I can make sure that they don't make the same mistakes I did.


Miggy: What is the biggest lesson you’ve learned since becoming an EDS mom?

Hannah: I've had to learn to give myself grace. My body doesn't allow me to be the mom I want to be and I need to accept my limitations and allow myself to grieve over that loss. It's okay to have bad moments or days, but at the end of it, I need to pick myself up and move on, both for me and for my kids.

***************

Hanna, thank you so much for sharing your story with us today and I sure hope we spread some awareness about Elners Danos syndrome. (For the record you are my third EDS spotlight--so we're on our way! Other EDS spotlights here and here.) The image of you crying in the elevator after your doctors appointment got me. I can't even imagine the mental weight that was lifted off your shoulders when you discovered that you're what you've experienced your whole life is real! I struggled with debilitating back pain for about a year and a half, and I came to have much more compassion for people who have unseen yet painful conditions that not only keep them from being able to fully participate in activities, but are also really misunderstood by others around them. I'm so glad that your children will grow up being able to take better care of themselves due to knowing about their syndrome. Your words, "I've had to learn to give myself grace." also struck a chord with me...it's always hardest giving it to ourselves isn't it? Thanks again Hannah and best of luck to you and your family. 

I'm looking for some new spotlightees out there, so if you or someone you know would like to participate in my Special Needs Spotlight series email me at thislittlemiggy at gmail dot com! I'd love to share your story. 

Have a great weekend. 
Happy December. 

XO
Miggy
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6 comments:

  1. Wow. Kind of freaking out right now. Just clicked a few of your links and your symptoms match mine and my son's. I just thought we were weird bendy people, and that my joint pain, etc. was something else entirely. Not sure what to think now!

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    Replies
    1. It's definitely something worth getting checked out!!

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  2. Thanks for the post! Just want to say that I am 29. A doctor a dancer and I have EDS. It's a hard disease but anything is possible.

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  3. Thanks for this great blog

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  4. I go through a lot of medical articles at work and I came across this one today, just a few days after reading this blog post. I'm sure devoted parents have read all the articles, but I wanted to share this one while EDS was relatively fresh on my mind: href="https://www.ncbi.nlm.nih.gov/pubmed/15540770"

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