The Honest MPS Dictionary

Posted Thursday April 02, 2015 by Melissa

The Honest MPS Dictionary

There are terms that MPS or other rare disease parents use that are just understood, no explanation needed. We use them and they carry such information and emotion that are only fully understood by a shared experience. But I thought it might be insightful to share what many MPS parents convey when they use these terms.

dictionaryafter = after the day of diagnosis, functioning with a scarred heart, never the same again

anticipation = the weighty knowledge that you will probably outlive your child; the clock in your head that you constantly hear going tick tock, tick tock…

appointment = exhaustion, potential for bad news, stability is worth celebrating

before = before the day of diagnosis, the pure sweet innocence of parenting a healthy child and not knowing that such horrible diseases existed

birthday = lamenting over the loss of time and skills, barely masked by a forced celebration of a societal milestone

bruises = not even sure where those came from

clean = something that doesn’t rise high enough on the list anymore

clinical trial = a chance to save your child’s smile, his laughter, or even his life

dark place = the hole you crawl in when MPS overwhelms, hopefully also inhabited by a friend with a ladder

exercise = harranguing your child to go in the direction you need, do what you need, or not do what might hurt him

family = anyone who emotionally supports you and pitches in to make this rare disease life more manageable

gift = anything done or said that shows an MPS parent that you “get it”

IEP meeting = stress before, power struggle during, and tears after

laughter = pure and sweet love, often recorded and replayed, with the weighty knowledge that it will likely someday disappear

moms = warriors

rest = being alone for five minutes, sometimes in a shower, sometimes in a closet, sometimes with tears

siblings = hopefully changed, often neglected, but never unaffected

smile = joy that lasts for days

weapon = anything, to an MPS child

What else would you add?

 

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7 Responses to “The Honest MPS Dictionary”

  1. Anticipation – waiting for a phone call or perhaps email w news re a test result
    or surgery date/information.

    Family – not always just blood but truly does become Providers, Nurses, some Friends

    Erica
    http://www.rarelydefined.blogspot.com

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  2. catalina colmenares // April 2, 2015 at 2:24 pm

    Happiness- A feeling that no longer exist in your heart

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    • Oh Catalina! I hope and pray that you can happiness again. Such an adjustment period, that year after diagnosis. Happiness certainly lives in that sweet boy’s smile.

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    • Of course you’re right Tom! I write from my particular viewpoint as a mom, but you and all the dads are definitely warriors too!

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  4. Bad/hard day- when you are faced with the possibility (still holding onto hope for a cure before it’s too late)/reality of your or your friend’s child’s death.

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  5. Germs- something that leads you to be completely OCD the week leading up to too often general anesthetics.

    Now you’ve got me thinking… 😉

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