Welcome to Holland

PMD Foundation family support for rare diseases

Welcome to Holland

Like most of you, PMD was something that just showed up in our family, out of nowhere.  It’s very similar to the poem, “Welcome to Holland.”  http://www.our-kids.org/Archives/Holland.html  

When first diagnosed, we were told that Logan wouldn’t live past his 10th birthday.  He was two at the time and I honestly wasn’t sure how to fill a lifetime of memories in eight years.  But, I took a deep breath, prayed for strength and reached out.  The day after we were diagnosed, I found the PMD Foundation by doing a google search.  It was really hard reading the family stories because we were just told the day before that most kids don’t live past their 10th birthday and the stories were of kids that were seven, eight, and nine.  I didn’t want to call and hear more bad news.

So, I saw this mom of two (Gina Jones) that had just taken a Make-a-Wish trip to Hawaii with her two boys in power wheelchairs.  I emailed her and then we set up a phone call.  She immediately put my heart at ease as she shared her experience and how much her sons could do. She also got me in contact with Dr. Jim Garbern and told me so much information about PMD that it was hard to process all the great information that she told me despite the grim news that our very own doctor told us.

I am happy to say that we celebrated that milestone birthday on June 27, 2017, in “grand” style. Our local movie theatre is called “Grand Avenue” and we rented a movie theatre and watched Cars 3 with 90 of our closest friends.  I knew that we would see this birthday and many more to come.  This is because I had reached out to Gina and Dr. Garbern.

Is life hard?  Some days, yes, but this is our normal and we embrace it. We have an older daughter that has been a great blessing not only to our family but the whole PMD lifestyle.  Do I mourn and grieve for what Logan could have been, YES!  That is normal!!! But, I’ve learned to live in “Holland.” I have made amazing friends in the PMD Community that I would have not otherwise met.  I’m so thankful for my tour guide, Gina, and I hope that I can pay the same forward to new families alike!

-Doris Parker, dparker@pmdfoundation.com

 

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