4/4

A high school friend reached out to me. She has been following Ethan’s Journey. She shared what life was like from the donor’s side as her young nephew donated his organs when he passed. I so much her point of view. Can you imagine yourself in the parents shoes making that decision? 

I had flashbacks of when I took Ethan to the DMV to take his driving permit test.  As he was filling out his paperwork he got to the question of “Would you like to be an organ donor?” He paused. “What does this mean?” He asked. 

I remember explaining to him what it meant. I remember saying “If you get to the point where they refer to if you are an organ donor or not, it’s not good for you at all, but it is your last chance to help someone else. Always check yes.”  At the time I wasn’t thinking of families that lose an their organ donor. I wasn’t thinking about families that need organ donation. At that point it was just a question. Just a box to check to get to the next step.

While I am glad we had that exchange a couple years ago, that box means something different to me now. Would I change which box I choose? Absolutely not. I am an organ donor. I intend to stay that way. But I can appreciate now what it means to the family in need of a donor. I have spent endless hours wondering about how our donor family is doing after the loss of their child. I want to share with them the priceless gift they gave us. I want them to know Ethan has given his new heart a good home.

Based on the NY DMV website only 42% of New Yorkers are enrolled in New York State Donate Life Registry.  The national average is 69% (gigitty). Come on NY....we can do better.

Also, I found that one donor can save up to 8 lives and improve the lives of 75 people by donating tissues and corneas. Wow!

I ask for you to rethink your decision if you are not an organ donor. You can easily change your status at donatelife.gov.  That is my public service announcement for the day.

I called in Ethan’s lunch order today. It is required for him to order one dairy item, one fruit item and one vegetable item.

The call went like this:

Me: “I would like to order the fruit and cottage cheese platter. A side of macaroni and cheese, a side salad, and a cherry Greek yogurt.”

Guy: “what kind of Greek yogurt?”

Me: “Cherry.” (As I had already stated)

Guy: “we have black cherry but not regular cherry.”

Me: paused for a moment ...I thought about saying that Ethan can only eat the red cherries because he’s allergic to the complex sugars in “black” cherries....which is my brain being an asshole. “Black cherry is fine.”

Guy: “you need a vegetable.”

Me: “a side salad.” (Also already stated.  Am I being punked?

Guy: “you need a dairy.”

Me: “Greek yogurt.  BLACK cherry.” Is this guy high?

Guy: “oh yeah.  You said that.  You need a fruit.”

Me: “would the fruit portion of the platter count as a fruit?” (I only asked this because they do not consider baked potatoes or baked sweet potatoes a vegetable and I found that out the hard way.)

Guy: “oh...yeah...I guess that counts.”

I got off the phone with him and took a deep breath.  Wow. That was a painful conversation. Maybe my patience is wearing thin.

Ethan and I bailed from the room today. It became quite noisy in our room. Our roommate’s mom came to visit and had music on, extra loud on her laptop and after hour two of listening to it at full blast, we both needed a break. We went to the lounge area. 

It was quiet. It was bright and was the right decision. It’s hard to share a room. Sometimes people just have different levels of what is acceptable and what is not.  This mom has walked in on Ethan twice while he was in the bathroom. Parents aren’t supposed to even use the bathrooms in the patient rooms. We have different bathrooms to use down the hall.  Ethan now has me guard the door as they don’t lock at all. 

We have learned to adapt to these new living arrangements. There are good things about it and bad. The bottom line is, we will be out of here soon. Couple more weeks.

Ethan had OT for a half hour. He liked it. It is cool how they incorporate games into everything. He looks forward to his therapies. He has an hour and a half of PT today. He is requesting to work on upper body since yesterday was lower body.

We were able to get time to go to the lounge.  He also went for a walk outside for a bit. There is a big fish tank with really pretty salt water fish in it in the lobby.  When we look at it, we create a back story always with a lot of drama. It’s fun. I actually might have more fun that Ethan. One fish can’t close its mouth. I call it “blow up doll fish”. It just swim as around surprises all the time.

We ate dinner and relaxed the evening. Our crazy busy week begins tomorrow with a more consistent school schedule. Wish us luck.