I have this friend that I am not sure wants to be officially outed here so I’ll change the names to protect the mutant (genetically challenged in the gene mutation category).
But. She is the mother of two children with ARPKD. She and her family trekked to the NIH to participate in an study on ARPKD. Her story is a lot like ours. She had a newborn diagnosed with ARPKD at birth and had their older child tested. He was diagnosed at age 6 with ARPKD too. They were devastated as you might imagine. As I know personally because we were as well. They were the first family* we knew that has two living children with the disease and it’s been a special connection for us because we both have the unique situation of ARPKD X2.
Today she sends me a note about being mutant, what, with all that disease talk she went through at the NIH. So she says…"really only other moms of mutants can possibly understand. So for us MOM means a few things!!"
You get that right? Moms Of Mutants.
Thanks you other MOM. I appreciate the laugh. If I have to be in this special club, I’m glad you are here with me.
*And well, since she’s commented, I can tell you there’s another family with two ARPKD kids (cute ones too!)! Hi Sheri!
That’s hilarious!! Moms of Mutants. Will have to remember that one. Love reading the blog, as always. Interested to see what the response is with it added to our homepage!
Being a superhero fan, the first thing I thought of when I saw the blog title was – we should make up some super power our mutant kids have, maybe a comic book or blockbuster movie – ‘ARPKD Kid’. Able to double kidney size in 1 years time. Able to fight foes with excessive urine. Costume would have built in blood pressure cuff and spleen/kidney protector.
I love reading your blog!! Being another “MOM” to two kids who both have arpkd/chf AND Cowdens Syndrome, I can totally relate to just about everything you write about. We are about to make our first visit out to the NIH in June where both of my girls AND my husband will be checked out. (My husband will be studied since he carries the Cowdens Syndrome. They are suspecting that there may be a link between the two rare diseases.) So I’m not only a “MOM”, but also a “WOMan”…(Wife of Mutant). I love the arpkd superhero idea!! So funny.
I know that you’re all discussing the “mom” thing here, but let’s not forget all the other mutants out there also trying to move forward in what seems to be uncharted territory….one of those would be me!
You can out me any time!! Not that I’m happy to have 2 children with ARPKD I am happy to be the MOM of these beautiful mutant kids and my third beautiful one who is different for his own reasons!!
Thanks for your support while we were at NIH. It was a good experience and we learned a lot but are very happy to be home.
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