Tuesday, April 28, 2015

Send in the Clowns!

It's been two weeks since Ric's last tests where his platelets were 58,000 but the rest of his numbers looked good.

Last Tuesday he woke up with a very sore throat, itchy eyes and extremely tired. He asked me to text the pediatrician, which I did. Her response was "We are not testing him. These are allergies. We don't want to create a hypochondriac.Up his allergy meds."

Send in the clowns.

A hypochondriac??? We have been telling him to listen to his body for 2 years! To be communicative of whatever feels "off". For 2 years that is all he's heard from us and his doctors. To be vigilant. Where is the line between listening to your body and becoming a hypochondriac? Where is the fucking line? Aren't we asking so much of a 16 year old??? He already has to deal with the fact that he has a chronic illness.  How much more can I ask of him? Her response was "Now he needs to learn to interpret what his body is telling him." Seriously!  We upped his allergy meds and hoped for the best.

Send in the clowns.

The week goes by and he doesn't seem to be getting any better. He still feels tired, he is still feeling kinda sick.  I am thinking, well they keep telling me it's allergies, so I guess it has to be allergies.  Sunday night I tell him that if he didn't feel any better by the end of this week we would call the doctor again. Well, Sunday night he ran a slight fever. Monday morning we were at the doctor's office. Again, she brings up the whole hypochondriac situation. A bit more subtle, cause this time she was talking to him and not me. She didn't use the word "hypochondriac" to him. She said, for the next two years I am going to teach you how to read  and interpret what your body is telling you. What are the signs that are concerning and what are the signs you can ignore.

Where are the clowns?

Ear infection! That's where the fever was coming from. Or is it? I don't know! They can't tell me for sure! Ric asked to have blood drawn and she refused. She said there was no need.  This morning he wakes up with a bit of bleeding from his mouth. 5:40am and I am texting the pediatrician again.....we have a bit of bleeding, nothing too severe. I tell her I am sending him to school cause the fever is gone. She agrees with me and off to school he goes. Her actual words were "ok, no stress!!". No stress??? WTF??? Of course, I am telling Ric no stress, all is good, call if anything else arises, have a good day! Me, on the other hand, WTF? No stress? Again, where is the line? Where is the line between overprotective mother and real concern?

Send in the clowns.

A friend told me today "Maybe the line is constantly moving". Then my husband said the same thing. I get it, I know nothing in this Evans world is black and white. I know that! I know it's a fucking sea of gray. The fact that I know and understand this doesn't mean I have to like it. I keep hoping there are a set of parameters we can go by, but the more we know, the more we learn there aren't any.

 Isn't it bliss?
Don't you approve?
One who keeps tearing around,
One who can't move,
Where are the clowns?
Send in the clowns.

Send in the clowns!!! There ought to be clowns!!!




**In the circus world, "Send in the clowns" means there has been drama and it is now time to put it at an end. When someone has had a lot of drama going on in their life it is time to send in the clowns, get rid of the grief, and be done with it.




Sunday, April 5, 2015

Another year goes by


Today marks the two year anniversary of our introduction to the world of Evans Syndrome.

In February, I found out that New Jersey was the first state to grant awareness to Evans Syndrome. Awareness is key to us, as I have stated in previous blogs.

One Facebook status later, I had a connection.....and a great one, thanks to my friend Kristin. I emailed Senator Darren Soto and a few days later his office contacted me wanting to help out. I dealt with one of the senator's legislative assistants, Angel. I had a lengthy phone conversation with Angel about ES. He then explained that they would draft a resolution and present it on the next meeting and if it got approved we would have to go to Tallahassee when they presented the bill on the floor. He said it could be a matter of weeks or one year. 

In March Angel calls and says "the resolution was approved! Can you come to Tallahassee on April 1st?" Of course!!! 

April 1st, the kids and I (and my awesome friend Deana) woke up at 3:45am to drive to Tallahassee (4hr drive) to have the resolution presented on the floor and to Ric! We were all super excited. William and Jonathan were very excited to go to the state's capital and see the inner workings of our government. This is stuff they read in history books. They never thought they would actually get to see it. Ric, on the other hand was more subdued. He was happy we were doing this, but he doesn't like to be reminded of Evans and today was going to be all about Evans.

We get to Tallahassee and go to our senator's office. His staff was super nice and very welcoming. They walked us to the gallery of the senate where we could sit to hear the whole thing go down. Click to see what happened! 

From now on, April 1 is Evans Syndrome Awareness day in the state of Florida. All it took was one friend who had a friend who had a friend and a senator kind enough to understand this was important to us. In the words of my son William, I really liked this day!

This day was huge in our household. It is important that our children see that when you want something done you need to do something about it. It may not be easy, but it is worth it. This is how you change your world. Not THE world, but our world. The Evans world. We did not ask to be a part of this world. However, we are. I believe we are here for a reason. My kids have a different perspective on life because of this. Ric has grown ages in two years. So have William and Jona. 

Two years have gone by since Ric was diagnosed. Two years ago  my world crumbled around me. We have worked hard at building it back up. The support of our friends and family has been instrumental to the rebuilding of our world. It hasn't been easy to deal with Evans, but it hasn't been impossible. Ric continues in good health and we are thankful every single day for it.