Thursday, May 20


Yesterday was a rather tough day for me. I am trying to establish care with a neurologist here in WA so I don't have to make the trip to SoCal every 6 months to see my current neurologist. Let me say, one of the hardest parts of moving was knowing that I wouldn't be near my team of doctors who literally saved my life. Yesterday I met with a doctor up here who criticized my CA doctor, didn't believe my diagnosis, wanted to take me off all my meds that have kept me stabilized, interupted me or didn't give me time to tell my story (even though she asked), told my my mom to shut up when she tried to help me out, and finally told me I needed both a psychiatrist and psychologist (wow!). Yeah~that sucked.

So I put a "woe is me" statement on facebook and started receiving such wonderful comments from friends far & near.

But then today, I received a notice on my wall from a (fairly) new friend, Kristine. But before I go into that, let me tell you a bit about Kristine.

While we've yet to meet in real life, I truly believe Kristine & I have connected in a sweet friendship. Kristine lost her precious, beautiful baby daughter (after 5 love-filled days) shortly after my nephew Demetri was "born sleeping." And we just, well, connected. Kristine is a special woman, whom I greatly admire. Her openness and vulnerability, her fight and drive, her everything is so inspiring.

Kristine's blog, Cora's Story, tells the story of Cora's brief, yet wonderful, life and how her life goes on and her story spread in order to save lives, so that (one day) no one will face the horror and tragedy that Cora's mom & dad did when she passed away from an undetected heart defect.

Kristine, through her grief, while grieving, has (along with her husband) founded Cora's Story, a non-profit organization that spreads information about CHDs (congenital heart defects), fights toward having every hospital give newborn a Pulse Oxometer test (that can help detect some CHDs) prior to being released after birth, as well as comforting and supporting other mothers/families who have lost a child to CHD or who are fighting for survival alongside their special heart babies. On the 30th of  each month, people are encouraged to wear pink in honor of Cora's birthday, but more importantly, to do an act of kindness in Cora's name.

Her blog is both a place to get out awareness of CHDs and a place to journal her grief. She writes the most precious letters to Cora there. This blog is full of Kristine's strengths and fragility. Her ups and downs. Her fight for life for other babies. And a touching tribute to her sweet daughter.

this one beautiful baby or what?!?

And then today, she leaves a message on my facebook wall, with a link to her blog that contains a posting that left me bawling like the proverbial baby. You see, another "heart mom," who does beautiful photography on behalf of grieving families, has started a blog called Spread the Love. This site encourages people to make a difference in someone's life...It could be absolutely anyone. Your neighbour. the postman, the person behind the counter in the grocery store, a family member or a friend.

All they encourage you to do is to put everything in writing. It does not have to be a long letter. It could be a short message on a post it note~just a little something that says something positive about that person. Tell them they are wonderful. Tell them they are appreciated. Thank them for making a difference in your life.

And (here's where my bawling started), Kristine chose me! I feel so absolutely honored and blessed by Kristine's kind words and encouragement. It totally takes the discouragement of yesterday & makes it seem like it's nothing. Which, in comparison to what Kristine is doing, it is!

And so, I send this love back to you, Kristine.

Thank you, Krisitne for thinking of me. For encouraging me. For being there for me too, even in your darkest days. Thank you for letting me walk alongside you on this journey you are on. I feel so absolutely blessed to be a part of your life.

I only wish that we had met under different circumstances and that Cora & Demetri were here too. But I know they are together, in a place of sparkling blue skies, jeweled butterflies and dragonflies, soft breezes, crystal waters, green grasses, and absolute serenity. I've seen them there in my dreams! And the laughter and peace and joy of this place is incredible. While I know they would have liked to be here, with us, I know they are in a special place where they look down upon us with love. How proud Cora is of her mommy! And the love is palpable.

You have touched my heart and I value our friendship. And so, I send the love you spread back to you! Someday, we shall have to meet in real life!!!

If you have someone in your life you'd like to spread the love to, just visit Carly's site and learn how to participate.

1 comment:

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