Being Thankful and Remembering Cora

The main part of yesterday was a horrible day for me. I had tears in my eyes quite often. I just couldn't get Lily's situation out of my head. I was sad. I was mad. I was wondering why everyone around me seems to have healthy babies, and MY baby has problem after problem.

I blamed myself. I still blame myself. I could have done things differently, or something.

I leaned on my friends, though, and they helped pull me through it a little bit. It still felt like I was preparing myself to say goodbye to Lily at any point though.

However, then I saw a post from one of my friends about Cora. Cora's mom had thought she was bringing home a perfectly healthy babygirl. Cora abruptly passed away from an undetected heart defect during breastfeeding. She was only like 5 days old. http://www.corasstory.org/. Today would have been Cora's first birthday. Kristin, Cora's mom, is an awesome lady who has pushed so hard to make testing for CHD a requirement. She's encouraged others to spread the word to pregnant friends about demanding to have a simple pulse-ox test done before they leave the hospital with their new baby. Its non-invasive, just a little band with a monitor in it wrapped around their toe.

Its something simple, cheap, and easy - and yet its not a standard test. Why? Why do we not have this test done when it could save lives? Its ridiculous!

I have to remember that I am blessed for each day that I have Lily in my life. That if 2 years or 5 years, or even 10 years is all that I'm meant to have with her, its still 2/5/10 years that I HAD with her. Kristin had Cora for 5 days. FIVE days! Take a look at your baby. Could you imagine only having that beautiful little presence in your life for five days? I have had several wonderful months with Lily so far, and I'm thankful for every single one of them.

When I feel like everything is dragging me down, I need to remember that I am blessed to have had the time with my daughter that I've had. That no matter what happens, I will have so many memories of her. That she has touched so many lives already, and she's not even celebrated her second birthday yet.

When you look at Lily, you don't see 'sickness'. You see firey-red hair, chubby little cheeks, and a bonfire of personality shining out.

(((This is Noah and Lily. They are 3 days apart. They had a very long playsession on Sunday)))

When I look at Lily throughout the day, for the most part I forget that she is sick. I see a normal little heathen who takes great joy in driving her mommy up the walls.

Then comes nighttime. With nighttime comes oxygen. As soon as I put the oxygen on her, everything comes crashing down on me again. However, even though Lily throws a fit when the oxygen is going on... I'm shortly confronted with this...

Oxygen on, hair up in pigtails to keep it from getting caught in her tender-grips, and laughing at seeing herself on the computer screen. You barely notice the oxygen. Again, all you see is the personality.

For someone who is unarguably sick, Lily has the passion and zest for life of five healthy children. For as sick as she is, she's hardly ever in a bad mood. My rugrat laughs and runs, gets into stuff she shouldn't, and requests tons and tons of mommy cuddles.

My friends tell me that they think of "Li'l Bee" often. So many of them check up on her to see how she is doing. She apparently melts quite a few hearts.

Its amazing how much someone who can barely talk can touch so many people.

Soon, Lily's story will be put 'in publication'. The Pulmonary Hypertension Association has asked me to write an article about Lily and the struggles that we have been through. I gladly agreed to do it. If Lily's story helps even one family of a little one who has been diagnosed with PH, I will write as much as they want me to write. It'll be in one of their PHA Pathways quarterly newsletters, and also listed on their site, in the "Journeys" section.

I still feel, in my heart, that Lily is not going to get a chance to grow up. Its this sick feeling in my gut that says you have to treasure every second, because you aren't going to have many more of them. I hope I'm wrong, but I don't think I am. Its not just the diagnosis of PH, either. Its something that I've felt ever since she was diagnosed with her initial health problems. I just don't tend to talk about it much.


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Anyways, I was in a horrible mood yesterday. However, when I got home, the first thing I heard was "MOMMMMMMY!" "MOMMY!MOMMY!" and I had a little monster running straight at me for some 'loves'.  Then, throughout the night, its like she knew mommy was having a bad night, because the trickster side of her was out in full force. She had me near tears a couple of times, just from doing things like poking a button on my computer, and then looking at me, with her lips in a perfect "O" of surprise, and sucking in a big breath of air like she'd just discovered something earth-shaking.

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One day I want to put together a book of 'memories'. I want all of Lily's family, including those who are a thousand miles away, and only see her through pictures and words that I write, to be able to tell her about her life from their perspective. To let her know how special she is, and how she has touched them. I want her to have it /I want to have it.

Now, dammit, I gotta go, cause I've got tears racing down my cheeks.

---- But before I sign off... I just want to say Happy Birthday, Cora! You will never be forgotten!