Chronic Illness, Disability Advocacy, Ehlers Danlo's Syndrome, Guest Blogger, Parenting, Rare Disease, Special needs parenting

The Day I Found out Most of My Family Was Chronically Ill

March 31, 2016, is the day my life changed.

March 31, 2016, is the day that Davy’s geneticist listened to me as I explained the research I’d done that led me to believe that both he and I had EDS and the day that she informally diagnosed us both.  I cried tears of joy in the elevator on the way down to the clinic parking garage that day while Davy happily babbled to himself in his stroller.  When I stopped at my friend’s house to pick up my other kids, she asked how Davy’s appointment had gone, knowing that it was a big one.  I told her that it was the best day of my life because I had found out that we had an incurable, progressive genetic disorder. I’m sure she thought I was crazy.

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Davy was born full-term and seemingly healthy, but things quickly went downhill with him.  By a week old, he was starting to refuse his bottles and have fits of screaming.  At three weeks old, my son caught a cold from his older siblings and had to be hospitalized for the first time.  He never seemed to recover from it and always sounded junky and stuffy when he breathed.  He would often cough and choke.  I would later find out that he had tracheomalacia, a condition where the trachea collapses during while breathing.

Davy’s feeding issues continued to get worse.  I would spend all day with my screaming baby in one arm and a bottle in the other hand, desperately trying to get him to eat.  When he was two months old, I took him to his doctor and handed her his feeding log from the past 24 hours.  By this point, he was only eating 7-9 ounces a day.  She sent us directly to the hospital where a team of doctors started running test after test on him to figure out what was wrong.  Test after test came back normal.  Before he was discharged nine days later, he had surgery to have a g tube placed in his precious little tummy.  

Despite finally having a way to feed him, Davy continued to struggle.  He was hospitalized three more times for respiratory infections in the next year and contracted pneumonia several times.  He had constant GI problems and often turned blue when he cried, which was almost non-stop.  

In the midst of the whirlwind of doctors’ appointments and tests for Davy, I was having issues with my health.       

From the time I was a kid, I thought I was the biggest wimp alive.  I had constant pain and couldn’t keep up with my siblings.  I honestly thought that everyone felt like I did and was just handling it better than me.  And then, when I was 30 years old, I was joking around with my sister about how hard it was getting older with all of the aches and pains.  To my surprise, she didn’t commiserate.  Instead, she looked at me in shock and said, “Wow.  I couldn’t deal with that every day.”

It was an eye-opening moment.  I realized that the intense pain I had along with my other weird, unexplained symptoms were not healthy.  As my health seemed to be worsening, I decided it was time to look for answers.  I wrote down a list of my symptoms which included hypermobility, joint pain and stiffness, dislocations/subluxations, sprains, back pain, muscle pain and spasms, buckling knees, GI issues, chronic fatigue, headaches, a severe heat and sun intolerance, an inability to regulate body temperature, easy bruising and scarring, dizziness, brain fog, and more.  I also had diagnoses of asthma, eczema, acid reflux disease, and vocal cord dysfunction.  

At the appointment with my doctor, I handed her the list.  She was stumped and wasn’t even sure where to start so she sent me to a neurologist.  The neurologist ran a few tests that all came back normal, so she referred me to a rheumatologist.  

The rheumatologist was booked out about six months, so I sat back to wait.  During that time, I posted a picture of Davy’s hypermobile foot on Instagram, and someone asked if he had Ehlers Danlos Syndrome.  I began researching it and realized that the symptoms not only fit him perfectly but me as well.  I started to suspect that Ehlers Danlos Syndrome was to blame for Davy’s issues and my health issues.  

That day in March when Davy’s geneticist informally diagnosed us both with hypermobility EDS changed my life.  After a lifetime of doctors and everyone else telling me that my weird, seemingly random pain and other symptoms were all in my head, I finally had an answer, and I finally knew that I wasn’t crazy.  And, after two heartbreaking years of test after test coming back negative for Davy, we finally knew what was causing his many medical issues.  Not knowing what was wrong with him and what his future would look like, if he would even have one, had been terrifying.

I had been extensively researching EDS for a few months before Davy’s appointment, so I knew a lot about it when that day came.  I knew that, although it’s classified as a rare disease, the truth is that it’s just rarely diagnosed.  I knew that many people fight for answers for years only as I had done.  I knew that most people have never heard of it and that many doctors barely understand what it is.  I knew that the condition desperately needed more awareness.

Knowing that my son and I had it and that at least two of his three siblings did too (both were diagnosed with EDS later that year and the third is being tested for it next month), I knew that I needed to do something to raise awareness for it and help others get diagnosed too.

On April 11, 2016, I started Sunshine and Spoons, a blog that I could use to raise awareness for EDS and other special needs and chronic conditions.  Within a few months, I was receiving emails and messages from people thanking me for talking about EDS as they were finally able to figure out that that’s what they had as well.  Those notes made the hours I spent writing and working on my blog worth it.  I knew precisely how validated and relieved those people felt.

Since 2010, I had been running an online children’s boutique selling handmade clothing, but with my health declining thanks to EDS plus the stress of caring for a child with complex medical needs, it just wasn’t feasible for me anymore.  However, I loved running my own business, and I couldn’t imagine giving it up entirely.  So in September 2016, I closed my boutique and opened the Sunshine and Spoons Shop.  Instead of sewing children’s clothing, I design shirts for all ages and mugs now.  Many of the designs I have in my shop help raise awareness for various special needs and chronic conditions.  I have also found a way to give back by starting the Sunshine and Spoons Giving Back program.  10% of the proceeds from the shop are donated to a different non-profit organization each month.

Having EDS is not fun, at all.  It’s painful and debilitating.  It’s heartbreaking, especially since my kids have it too.  But I’ve been able to turn it into something that helps others and has given meaning to my life.  

 

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3 thoughts on “The Day I Found out Most of My Family Was Chronically Ill

    1. Awesome! We absolutely LOVE Hannah! She’s been such a blessing to our family as we learn more about EDS. My son is on the path to receiving this diagnosis. Everything so far is pointing toward Hyperflexiblity Ehlers Danlos. If you ever want to contribute to our page – we’d love to have you!

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