Unknown & Unchanged

September 8, 2011 at 9:24 pm | Posted in Grief, mourning | 17 Comments
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Nothing has changed.  If you had spoken to me (or I had written) yesterday everything would basically be the same.  Jake and Sawyer died.  The twins are healthy.  However, today we received an email from Sawyer’s pathologist.  We have waited for over a year for the results of the Mayo clinic study which Sawyer is a part of.  The study tests for cardiac channelopathies, such as long QT.

Sawyer’s doctor wrote, “none of the genetic-DNA mutations that are known to be associated with/responsible for abnormal heart rhythms has been identified in Sawyer.”

I always knew the study might be inconclusive.  However, I hoped that there would be some sort of medical answer.  An answer that could somehow help me rationalize and comprehend Sawyer’s death.  If there was some known medical condition we could have the twins tested for it.  As of now there is no answer.  Maybe there never will be.  No one ever promised that life would make sense.

The cause of Sawyer’s death is unknown.  The facts are the same as they were yesterday.  Nothing has changed or has it?

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17 Comments »

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  1. I’m so sorry. It would have been easier to point to something decisive, something that we could test for and protect against. It’s all just too unfair. My thoughts are with you, always.

  2. How frustrating! Medicine can be so inprecise at times. I’m only sorry to hear that these results aren’t giving you more in the way of answers…

  3. Oh Lane, am so sorry. It seems the one thing that is always left is love . . something so tangible when we feel it, and yet not tangible at all. Love is described in so many ways by so many. What I know for certain is that Jake, Sawyer, Fletcher and Alyssa have all been touched by your love, and it is with them forever.

  4. Dear Lanie – I do understand that having answers seemingly makes it easier to accept things, especially difficult things. But I hope that the absence of any identifiable genetic cause for Sawyer’s death will help put you at ease about Alyssa and Fletcher. They won’t need to be tested and we wish both of them a full, healthy and long life!
    Love, Cornelia

  5. I wish you had some answers. Im still searching for answers too. Im relying on the March of Dimes to discover the reasons that some women have pre-term births. Its so frustrating not to know. Im sorry . .

  6. I love what Maryanne said. None of us is the same for having had you in our lives. Sawyer and Jake were touched by your love. Those of us lucky to be here continue to be touched by your kindness, your love, your friendship, and your faithfulness.
    Love, Amy

  7. I’m sorry you don’t have a concrete answer. I understand that to “know” gives you the demon to shake your fist at. The one thing you do know is Love. You love, you have loved and you will continue to love. And that Lanie is a very, very good thing.

    Linda

  8. I know how long you have searched for this answer and I am very sorry the research did not provide the answer. I know this had to be disappointing for you and Evan.

  9. Maryanne and Amy are right… That is really disappointing news for you I am sure. Just know that all of our are still praying you and you do touch us all in amazing ways!

  10. Are you still able to test the twins for Long QT for peace of mind anyway? I have a sister who has long QT and all of our family were tested. All that was required from us was blood tests and they checked with an ECG…..also any new babies in the family were checked at 6weeks with ECG’s. I am sorry for your loss and no answers.

    • Thank you for asking – we have had the twins tested with echos and EKG’s. All my best to your sister.

  11. how frustrating lanie. how completely frustrating. i’m sorry the results were not more conclusive. love you.

  12. […] As I explained in this post, the bolts on Jake and Sawyer’s nameplates were replaced.  I still do not understand what happened to the bolts.  There was no construction in the area.  No other recent funerals have been by their plot.  I might have to add this to the long list of unknowns. […]

  13. […] case,  medical facts establish the cord as the cause of death.  Medical professionals, including Sawyer’s pathologist, determined that it is impossible to conclude that drug use on the part of the mother […]

  14. […] held you.  I am angry that you are not here with us.  I am frustrated that we may never know the cause of your death.  I am heartbroken that your father and I can no longer take care of you and watch you grow up […]

  15. […] while they are still growing.   Medical discoveries are being made every day.  Maybe one day the channelopathy (or whatever caused Sawyer’s death) will be […]

  16. […] pathologist emailed in 2011 that “none of the genetic-DNA mutations that are known to be associated […]


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