Saturday, January 24, 2015

Brutal reminders


The Evans community has had two reminders this week of how this disease can kill you.

I hate these reminders. I hate them! Because it makes me face the brutal reality that my son is at risk of dying from this shit. Granted, Ric is doing well so far, but that reminder is there. Always....fucking....there.

It's there everyday when I open my eyes and wake up to a new day. My first thought every damn morning is "will the shit hit the fan today?" Mothers are worriers, period. For mothers of chronically sick children, worry is an understatement.  Every morning after that dreaded thought my second one is "choose happiness. Choose peace. The other shoe will not drop today." 

People say "one day at a time" not even realizing that one day at a time is pretty exhasperating. One day at a time basically tells you tomorrow is not guaranteed. One day at a time 
sucks.

It sucks, but we do it everyday. We power through the unknown because we don't have a choice. We have to remain strong for our children, so they can rely on us. 

This week our Evans community lost two people. Science doesn't think these patients are worth a damn. Research scientists don't think these people are worth a damn. Insurance companies don't think these people are worth a damn. "There's not enough people with the disease to justify research", they tell us. So, my son basically is not worth a damn. This is the reality we live in. 

We lost two people to Evans this week. Two people. The reminder staring us in the face that this could happen to my son at any given moment.

Monday, January 12, 2015

You have to live too!


I had a big race this weekend. Earlier in 2014 I had signed up for Goofy Challenge. This is run a half marathon on Saturday (13.1 miles) and a full marathon Sunday (26.2 miles) for a total of 39.3 miles for the weekend.

On Thursday, Ric came home from school feeling weak and with a stomach ache. At first I thought he had caught the stomach flu both his brothers had days prior. Then he ran a higher fever than his brothers did, which I attributed to Evans...because as we know, nothing is simple in the Evans' world. Of course, I immediately texted our pediatrician who said "sounds like the flu, go to the office in the morning and have some wine now". 

Friday morning....8:30am we are at the office. They test for flu, negative. They test for strep, negative. Our regular doctor was out sick so another doctor saw him. She had never dealt with Ric and asked if we wanted to draw blood and check his numbers. Lately, I have been letting Ric make the call (if he feels bad) to draw blood or see the doctor. He said he felt fine and he didn't want his blood drawn. The dr looked at me and I said "It's his body. We drew blood 10 days ago and everything looked pretty good." Then she said "we are drawing blood, end of story. We need to make sure." Meet my 2nd favorite pediatrician! 
Thank God she decided to draw blood cause his platelets were down to 50,000. They had been 115,000 10 days ago! Just 10 days ago! Both pediatricians and the heme/onc think the drop in numbers is due to whatever virus he is fighting. We go Friday for tests again.

Now the real internal battle begins. Do I run the race or stay home and quit the race? The plan was to be out the whole weekend because these Disney races are crazy early. Josh was home and he said "you continue with Goofy plans. I am home and I will take care of things here." Pediatrician also texted and said "go run your races." I am not going to lie, I felt like shit deciding to run the races. I felt selfish. But at the end of the day I ran my races as planned and everything was just fine at home. Ric didn't run any more fevers and didn't have any other symptoms. He played ps4 the whole weekend with his brothers, so he didn't miss me at all!

Today, after all was said and done I thought about how deciding to run my races was the best decision for me. I had a fantastic weekend. I ran the half with one of my best friends from high school. I ran the full with my friends whom I had trained for this. I had fantastic races and I feel completely ready and refreshed to deal with whatever comes.

Today, I saw the pediatrician cause Jona has an ear infection...again. She said "I see you are wearing your marathon shirt. So happy you decided to run your races. You can not live life thinking hell is going to break loose if you are not there for Ric. You have to live too. He is not going anywhere." 

"You have to live too". Easier said than done. The one thing I am the proudest from this weekend is the fact that I tried my hardest to enjoy myself and not be a debbie downer to the people around me.  That I did not break down in the middle of the Expo when I received the call with numbers.  That I sucked it up.