It's difficult to believe a year has passed. A full 365 days. I woke up that morning and I just knew. I could never tell you why, but I knew. I went about my day as planned. Went to work and tried battling that knowing. But I was hyper aware of the phone sitting in my pocket. I waited for it to vibrate, letting me know I was right. And it happened. I don't remember the time, but I remember it happened. My Granddaddy was gone.
I remember it was sunny that day. How fitting Eddie Vedder's lyric, "And the sun it may be shining, but there's an ocean in my eyes 'cause I know that this is goodbye," was for how I felt; how we all felt. But today is cloudy and grey. The universe paying homage to a great loss. I hope it snows. It would feel right. Granddaddy loved the snow.
And though I'd be lying if I said I feel absolutely no sadness today, I have to focus on the present, something my dad actually talked about earlier on his Straight Up Living page,
"My father passed one year ago today. I share that to stress a point. I could spend this day remembering, in detail, the last days of his life. I will not because my Dad taught me to do things differently, and to think differently. I choose to honor him by FOCUSING my mind on the things he taught me, and to live the best life I can. He loved family, intensely, and was extremely generous in all ways. Today, what are you choosing to focus on?"
So, today, I'm focusing on the present. I'm focusing on how smart my daughter gets as each day goes by. I'm focusing on bettering myself as I see needed. I'm focusing on loving. Not sadness. Because more days are going to pass. More years without Granddaddy and everyone else we've lost. Focusing on the sadness will do nothing for their memory, but moving forward, staying strong and continuing to love will do wonders.
"I've got our love to remember. That will never change, I have you in my head." -Eddie Vedder, "Goodbye"
****EDIT: Not even an hour after posting, it started snowing.****
I checked my page stats for the fun of it this morning. I knew my blog post had been shared by the radio station holding the fundraiser as well as by my friends and family, but seriously, as of right now, there is a collective 455 views since posting yesterday. I am so completely overwhelmed with the attention Emmalyn's story got. I'm writing this to thank everyone who read the blog and spread the word. I hope, if no one in those nearly 500 views was able to donate that they at least have a better understanding of how important children's hospitals are.
Again, thank you all!
This week, a radio station I listen to often (Alice 105.9) is holding their annual Radio-thon to raise money for Children's Hospital Colorado. Last year, I called nearly in tears and donated what small amount I could for what they've done for us. This year, I want to share why it's so important to me.
Emmalyn Evon was born August 4, 2011. Everything went well, she passed all of the newborn tests to make sure she was healthy. The perfect birth and beginning to a wonderful lifelong journey. When we went to her week old check up, she, like most babies, was diagnosed with jaundice. However, she had also lost an immense amount of weight. Because of this, we were immediately sent upstairs to the NICU, where she would be put on jaundice lights and generally monitored. We woke up the next morning to find they had put Emmalyn on oxygen. They said it was common in the altitude, and it would most likely be temporary. We warily accepted this (really, what could we do?) and went through the steps to take her home a few days later, still on oxygen.
Now, I should mention that I had New Mommy syndrome bad. I was so terrified of harming this little fragile angel in my arms. So, needless to say, I had my eyes on her quite often. One night, I felt like she didn't look right when she was breathing. I tried ignoring it for a little while, but the anxiety took over. I asked my husband if it seemed like she was holding her breath and then panting for air. He told me to turn her oxygen up a notch (what we were told to do if anything seemed odd). Unsatisfied with just that, we called the hospital, who told us we needed to head to the ER, the first of many trips. At the hospital, we found out she was dealing with apnea. We went home the next morning after over night observations showed nothing dangerous (her oxygen saturation levels were normal, though she would stop breathing for short periods. The doctor said he'd rather she went home than get sick being exposed to the hospital).
At her ER follow up with her pediatrician (which was in a clinic at the Children's Hospital, I should note) we were sent right back upstairs to the NICU for more apnea. A number of tests were done, from blood cell count to meningitis. It was terrifying, to say the least (as if this wasn’t all terrifying already). Nothing came back to answer the apnea question, however they did believe she had reflux (which they thought may be causing her to hold her breath because it hurts), so she was put on medication for it.
A week or two passsed before we were once again admitted into the NICU. This time, the doctors decided to perform a sleep study to figure out what the issue was. The sleep study showed she was having severe periodic breathing and one lazy brain wave was causing some central apnea, so they upped her oxygen and started her on caffeine.
Another hospitalization and two more ER trips the next month meant we were still in the same spot with no answers. On October 2, we were admitted to the 8th floor (general hospitalizations) and they got straight to work trying to figure out what was wrong. They did an MRI, EEG, Upper GI, the whole shebang. While most tests came back normal, we did discover more about her reflux, which made things lean more toward the reflux causing it.
Things slowed down as time went on. Emmalyn was still on oxygen and medication and we didn't have many more answers. We knew she had apnea, we knew she had reflux, but nothing much past that, despite the many great efforts from the Children's Hospital.
On November 6, 2011, Emmalyn was discharged from her last hospitalization to date. She was taken off full oxygen, having been told to only wear it at night, along with an apnea monitor. Her GI doctor said that despite everything we tried, she was growing out of the terrible reflux and could eat normal amounts of formula (she was on 2 oz every 2 hours well past the first couple of months like most babies.) She had another sleep study on March 17, 2012, which showed she still needed oxygen on at night and that maybe her adenoids should get checked (something that still needs to be done, so that's not relevant.) In June, 2012, her pulmonary doctors agreed she was fine off of oxygen.
Today, Emmalyn is a happy, healthy, smart 18 month old. Despite the fact that we never really got all of the answers we wanted, the Children's Hospital Colorado did everything they possibly could to figure it out. And every day I am so thankful the ER didn't just send us back out the door for being overly paranoid new parents.
So please, if you can, donate. If you don't want to donate to Children's Hospital Colorado, donate to your local Children's Hospital. Without them, I don't know that my baby would still be here.
To donate through Alice 105.9:
Call 1-800-458-KIDS (5437) RIGHT NOW to donate!
Online at: http://bit.ly/ykthV1
THIS ENDS TOMORROW, FEBRUARY 22, 2013. SO GO NOW! And if you can't donate, just spread the word.
Hello! I'm Lindsey. I'm a writer with a ton of random thoughts bouncing around in my head. So I share them here in hopes that they reach others with these thoughts.