Prayers are answered!

Another Disney photo.  We loved having our meals with the characters. Ethan is on the left.

Ethan as a pilot.

Our prayers started to change near the end of this week.  Since we knew we were getting test results on this FRIDAY of last year, Friday, March 25, 2011, we prayed that whatever the test results were, we would KNOW what we needed to do.  We wanted it to be clear to us and not "iffy".  We, of course, would help Ethan recover no matter how bad off he was, even if it meant for the rest of our lives.  We are his parents and are willing to do whatever it takes.  Wouldn't anybody?

As we gathered together throughout the morning, once again we had 40 or so people in the quiet room waiting for the family/care meeting at 1:00.  Our prayers we constant!  We wanted to know the chances for our little guy!  I can't tell you how anxious I was as we waited.  Especially with the 'not knowing' made it so difficult to focus on anything.  I spent as much time as I could with Ethan.  I couldn't sing to him like Marcus could.  It just made me cry.  But, boy, I LOVED listening to my husband sing "My Little Buckaroo" to him. It tore me up, but I LOVED it!  For those who don't know, Marcus is an amazing singer and always sings to our children. I leave this role to him, but I try my best. I physically couldn't sing because it just hurt.  Marcus sang to him every day and night.  He would also tell him stories.  Ethan loved stories! Marcus was amazing during this whole week!  A-amazing.  I couldn't have asked for a stronger more comforting man to be at my side. 

As we came into the quiet room for our meeting, Marcus and I had front and center seats (of course).  We sat on a little couch holding hands, tightly.  We knew whatever the answers were, it would be okay. We had been comforted by this thought.  We didn't know what 'okay' meant.  Did it mean he would be okay and eventually walk out of the hospital our little Ethan?  Or we would be okay with the results?  Our faith remained strong where we would trust the feeling.  We had one of the doctors tell us earlier in the week, "I've seen better and I've seen worse walk out of here.  It's all up to the good Lord, so keep praying."  We also had all of our questions and my brother's questions ready to go.  I'm sure others had questions and asked them, but I just remember my brothers had their list.

When the doctors (about 6 or them) came into the room, I could almost see on their faces that it wasn't good news.  I, of course, wanted the hope I had been grasping onto all week, so I ignored their faces.  They sat down and started to explain.  I, honestly, don't remember all the details, but I do remember we were told about the tests.  The tests would show what information was going from the brain to the body.  They tested all of these 'routes' and if they worked or not.  The answer was:  Nothing worked.  I became mute and couldn't say anything.  I just cried.  There were not any messages being sent from the brain to the body.  The brain worked, but it couldn't send any messages.  Marcus, with the clarity he had all week, started asking questions.  Marcus asked, "Is there even ONE passageway?" (We were trying to see if there was even 1% of the brainstem left that worked.)  The specialist answered and said, "There mmigghhtt be one ..."  Marcus interrupted and said, "This is my son!  Do not give me a 'might'.  Is there or is there not a passageway?" ( He did ask this kindly)  The doctor shook his head and looked like he was about to break down himself.  I looked around the room and saw everyone (or most) people with tears streaming down their faces.  I remember looking at my brothers and realizing their hopes were dashed. None of the questions they had mattered. There wasn't anything we could do to help him be better.  He could live on life support for the rest of his life, never move, never talk, and never do anything.  The doctors said he could possibly blink back messages, but they couldn't tell us for sure if he'd even be capable of that.  They were sure he couldn't hear, only "possibly" see.  We all knew it was Ethan's time to go.  Again, I felt as if I was living someone else's life for the moment. Was this really happening?  It was and I was going to spend every last minute with Ethan that he had.  However, we knew our prayer WAS answered.  It was very to clear to us what the answer was.

At this time, we asked for no more visitors.  It was too much.  We had been very open with visitors all week, but trying to tell people about him now would be difficult  because we would just be telling them he would be dying.  I couldn't handle it.  I am not sure if it was an "I" in this situation or a "We", but my husband really did whatever I would ask.

Around 4 pm or so we met with the Organ Donation.  Ah!  This  proved to be more difficult than I ever imagined.  They came in to explain to us what we needed to do.  For them to have everything set up and know who was going to receive the organs and where the organs were going, it would take 18 hours before he could be taken off of life support. They needed his organs five minutes after he passed. What?  Because I knew the inevitable, I couldn't imagine waiting 18 hours KNOWING what was going to happen in 18 hours. I turned to Marcus and said, "I can't do this.  I can't have that long of a wait."  I was determined I wasn't going to donate.  It was going to be too long and it was too much for me.  My brothers were in the room at this time and I remember my brother, Sean, looking at me and saying, "What would Ethan do?"  I wanted to hit him (Sean, not Ethan). It's true.  Ethan would want others who were in need to be taken care of.  I would do it. My husband let me make the decision. Yes, we would donate.  Yes, I would wait the 18 hours.  And, yes, it's only because Ethan would do it.  Not me.  That may sound a little selfish, but it was true.

I had to have Parker and Madilyn come and say goodbye to their brother.  My sister was reminding me of how hard this was on her to bring them because Parker had so many questions on the way there.  He wanted to know why we wanted to talk him, what was the matter, and why she wouldn't tell him.  Cynthia had to keep telling him she didn't know, and we would talk to him when they got there.  We had asked Cynthia not to tell them anything because we wanted to. Plus, who would want to say anything?  Parker and Madilyn had been in and out of the hospital all week.  They were also very distracted by all the cousins.  But now, we had them come down to the hospital on their own. We brought Parker in first.  I took him on my lap and hugged him. I told him Ethan wouldn't be coming home with us.  He asked why.  I told him the "doctors didn't know how to fix what he had."  Parker responded with, "It can't be that hard.  Can't they just figure it out?"  Because Parker wants to be a scientist, I tried to explain the science side of it.  "The science has not figured out how to fix the brain stem."  He just kept repeating that it couldn't be that hard.  They had to be able to fix it!  He cried. All I could do was hug him and tell him it would be okay. He needed to say goodbye to his brother because he would be passing away during the night. (We weren't sure on the exact time because the Donor organization was going to try to be faster than 18 hours.)  He cried and cried.  What else can you do?  Madilyn didn't say much.  She just cried and asked why.  I don't remember her exact response because I was still recovering from Parker's response.  I really just remember all the tears and them saying goodbye to Ethan.  How sad!  And how I hurt for my children-all of them.

I remember I had told Ethan's nurse how hard her job was taking care of these Pediatric ICU patients.  She told me not everyone was like Ethan, so it wasn't too bad. After listening to me talk to Parker and Madilyn, she looked at me, and she had obviously been crying. She said, "And you told me my job was hard."  I thought about that for a minute.  She was right.  Telling my kids WAS a hard job.

This night I stayed the night at the hospital. (of course) We weren't sure on the timing of everything.  I didn't sleep a wink.  I cried the entire night.  I said goodbye over and over and over.  I wanted Ethan to know I loved him. I wanted him to know I tried my best as his mom.  I wanted him to know he would never be forgotten. I wanted him to know everything!  I talked to him a lot.  The doctors said he couldn't hear us, but I don't believe it. I know he heard every word. How heart-wrenching this was!  I still felt like I was literally breaking in two.  I didn't know how to stop crying.  So, I didn't.

We had family members sleeping in the quiet room this night.  My in-laws we using two chairs pushed together to sleep.  They just wanted to make sure they were right there for us.  Others were there too, but the impression of my cute in-laws in their sleeping state remains with me.

We waited for word from the Organ Donation.