Sunday, May 26, 2013

Nearly Meisyn's In Memorium? Trip to the ER

People discreetly try to ask, "How much time does Meisyn have?"  I myself want to know, at the same time I dread nothing more than knowing.   The answer is that nobody knows.  We live minute to minute and today she stopped breathing and it could have been the last day we had with her.

What we do know is that she has a rare and degenerative form of spinal muscular atrophy/muscular dystrophy.  She will continue to weaken.  She will have periods where she crashes.  This is where she has a physical crisis and never returns to the strength she had before.  We could have months or years left with Meisyn but her nerves with continue to degenerate and her muscles atrophy, and eventually her heart muscle will die or she will go into respiratory failure.  We will be faced with watching her waste away a nerve at a time.

Or, she can be taken from us in minutes or hours.  She is always a 12 hour dehydrated state away from muscle breakdown and organ failure.  Today was a dress rehearsal for emergency while my husband and I left for an hour to attend church.

We returned home to learn that Meisyn was in the ER.  She wasn't breathing.  PANIC.  ABSOLUTE PANIC.  My deepest thank you to big sister Shayna and dear friend Ginger who got her to the hospital.  Meisyn did not need CPR but I think Shayna just about did.  It scared her beyond measure but she still kept her head.

Meisyn had been lying on the floor and Ammon tried to put the recliner foot rest down and Meisyn's head got caught.  She felt dizzy and started choking.  Then she stopped breathing.  What followed was likely a seizure.  She began flailing and pulling frantically at her clothes.  She was still in this state when she arrived at the Emergency Room.  Thankfully, she is now okay.  X-rays showed that she has a swelling in her throat but whether that is from today or possible croupe is not clear.  She begrudingly had a steroid shot and then even asked Ginger if she could go play at her house so the order of the world is somewhat back on its axis.

The drive home requires us to pass the cemetary.  Meisyn noticed all the pretty flowers.  She said, "Mama, I want to go there and get all the pretty flowers too."  Pierce my heart and soul.  I pulled in to the grave yard and we drove to an area where my friend's daughter Megan lies in repose.  I stopped the car and Meisyn and I talked frankly about why the flowers are there.  Why there are names on the stones.  What lies under those stones.  I shared that people come to visit the people who have died and who they miss.  She earnestly replied, "Mama they aren't here.  They are with Jesus in their new sparkly bodies.  THEY ARE NOT HERE."

Oh Meis, how can I do this?  How can I let you leave before me?  How can you no longer be here with us and we survive?


  1. This is a heart-wrenching time for you and your family. It's heart-wrenching to read, but at the same time I can't help but think what a blessing it is that YOU (and your family) were chosen to shepherd your new daughter from orphanage life, to family life, to eternal life. Thank you for sharing it with the wider, Internet community of friends.

    So glad Meisyn bounced back today!

  2. I read this story with such sadness. You guys sound like terrific people based on the KSL article. But, what amazed me was that Meisyn seems to be full of hope and pixie dust.
    Whatever time you have left with her, may it be fulfilling and rewarding.

  3. My heart just weeps in reading this post. I am always in awe of sweet Meisyn's spirit and amazing understanding of her situation and the eternal plan. What a great teacher she is! We are so glad that Meisyn receovered from her ER episode, and pray many, many sweet days ahead for her and your wonderful family. We do pray for her and all of your family always.


  4. We all need 'Meisyn Lessons' to keep things in perspective.

  5. Please put these together in a book, Stef. The world needs more of Meisyn.