Eden's Heart: March forth

Wednesday, March 4, 2009

March forth

With a heavy heart, exactly one year ago, I sent this email to many of you.

Wow! What a difference a year makes!!

Dear all,

I read an article in the newspaper this week about a woman who has been inspired by the date, March 4th, or as she says… March forth! She describes it as the only date that can be used as a command, a verb; that literally compels you to action. She has celebrated it most of her life and now encourages others to wake up, get out, dream big and march forth! I find it as no coincidence Eden's big day of testing which resulted in her being listed for a heart transplant was this last Tuesday, the day after her 2nd birthday, March 4th. We came home from the hospital after ten long hours. Eden was exhausted and in pain. I felt depressed and defeated. After two years of fighting, hoping and praying for this child's life, it was official, she will need a new heart in order to continue living. Although it is painful at so many levels… understanding Eden's current fragile state; waiting for another child to die; being unsure of the future…, a line has been drawn and it is time to move forward. March forth. It has taken me a long time to learn that I did not cause Eden's heart condition and there is nothing I can do to fix it. She may die in the next year or outlive me by forty. What I can do, what I have to do, is put one foot in front of the other and continue on. Progress. March forth. We have learned that our wait for a heart may be long and in effort to "march forth"; I will be running everyday until Eden receives a heart – if for no other reason than to keep my mind off of the waiting. I plan to use the time to clear my head; strengthening my own heart, sending some of that extra energy to her. Join me if you like… or not, but either way please keep us in mind. Eden is quite the fighter and seems to be choosing to stick around for a reason. We pray she continues for four or so more months.

Love and hope,

Kera, Brian and Eden Raine

This day comes at the perfect time. The day after Eden's birthday.

Just as Spring is starting to show her face again. I am motivated to get outside.

It is not just the end of a crazy, stressful year. It is most certainly a beginning.

March 4th. March forth!

1 comment:

kcmostrich said...: It was great for Roberta & I (Papa) to be with you and Eden for a part of March Forth day. Missed you Brian, Jayhawk BB fan and super dad. See you next time.
I was amazing to see Eden get right on the High-Tech scooter (pictured) we brought and takeoff down the sidewalk -March Forth, so-to-speak. It was also special to watch Eden play with her imaginary friends that seem to stand-in so well for those kids she would love to be with.
Kera, Eden’s cold to will pass and her energy will return. Then you will also feel the heaviness of the caring mother pass. What a beautiful job you are doing. Eden is so loved. Papa; March 11, 2009 at 8:33 AM

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What is Hypertrophic Cardiomyopathy?

Hypertrophic Cardiomyopathy, is one of the four main types of cardiomyopathy. Characterized by the abnormal growth of muscle fibers on the heart muscle, HCM often results in a thickened septum and/or left and right ventricle. The thickening of the muscle can result in a resistance of blood flow both in and out of the heart’s chambers. When this occurs, the heart must work harder to pump blood throughout the body.

While perceived to be somewhat rare, HCM affects an estimated one in 500 people. It is the number one reason for heart transplants and the most common cause of sudden cardiac death in people under age 30. HCM may be best known for its role in cardiac arrest and subsequent death in some young professional athletes. The cause of HCM is largely unknown, however current research suggests it is genetic in origin.