Thank you hon. I know that was soo hard for you to post, and I am sure tears were streaming down your face, as they were down mine, while I was reading it. Yes, unfortunately you do understand the beast that robbed us of our sweethearts, our best friends, and our future. Some of what you wrote, ... reminded me of the night Jason passed.
Jason hadn't opened his eyes from Friday at 9pm.
On Sunday morning, I was questioning everything. He hadn't opened his eyes in over a day, I hadn't slept in 3 nights, been giving him meds on the hour, hearing his breathing... I wondered.. was I doing this to him? Could he come out of this? I needed a second opinion, so I called a friend of mine who is an ICU nurse at a local hospital, and asked her to come over for a second opinion.. to give me assurance that I was doing the right thing. When she walked into the room, she started to cry, and pulled me aside and said, "Hon, you are doing everything for him. Yes hon, he is dying. He just has a very young heart and so its going to take a little longer. But yes, he is dying hon." and hugged me. (Later she told me, that she told Jason's pastor to expect a phone call later that night.)
As hard as that was to hear, it also was a relief, and made me ask, okay, so what is he waiting for? What is he needing?
If you knew Jason, his children was his world. They were his greatest achievement, pride, joy, and love. Well, that Sunday, was also our daughter's first birthday. (Yes, Jason died on our daughter's first birthday.) So, my sister had went out and bought a small cake, balloon, and wrapped one small toy in tissue paper. We brought our daughter's high chair beside Jason's hospital bed and sang to Katie, blew the candle out, and had her start eating the cake. I tried to act "normal", and while watching our daughter eat her cake, I put my hand on Jason's shoulder and said, "Hon, you've got to see this. Katie is liking the cake more then William did at this age." And for the first time, in over a day and a half, he opened his eyes and then closed them once more.
After that, his breathing changed and I called hospice in. The CNA sat with me for over an hour, then, I think she knew, he was getting close, and needed her to leave. As soon as I closed the door and turned around, Jason's eyes were open for the last time.
I told him my heart and expressed my love to him, and kissed him goodbye. He took his last breath and I closed his eyes.
I called hospice and the nurse on call (not Jason's nurse) came out. I laid on his chest, held his hand. kissed his hands, kissed him, crying, putting his hand around my head as I rested my head on his chest. Feeling his chest get cold and get firm, feeling his fingers grow cold.. all the while wishing my own heat would keep him warm, .. keep him with me... quietly sobbing, .. wishing for him to return to me. Jason's pastor showed up. He just stayed in the background, and let me have my time with Jason... the nurse on call, was a bit rude, and started to try to tug at the oxygen nasal canuli tubing. I yelled for her to BACK OFF! That I wasn't going to do this without his CNA or his nurse.
She quickly realized that she was going to be no help to me, and started calling Vicki (CNA) and Angie (Nurse). Vicki lives closer then Angie does, but Diane (the nurse on call) couldn't reach her. Even thier boss couldn't reach her, even though, Vicki has just been there. They finally got ahold of Angie and Angie made the over hour drive to our house. This whole time, I just laid on my sweetheart's chest, quietly sobbing and talking to him. I knew it was only a matter of moments before they took him from me for the final time.
Angie finally got there and gave me a hug and we cried. She took it at my speed and let me know that I was in charge. I told her that I wanted to give him a bath and dress him before she called the funeral home and that I only wanted it to be her and I in here and be the only ones to touch him. So we gave him a bath, dressed him in shirt, shorts, socks, combed his beautiful hair, and put his glasses back on him. Once we did all of that, Angie asked if it was okay to call the funeral home now, and I nodded. I went back to laying on his chest.
Both Funeral directors came out in 3 piece suits at 1 in the morning. They were soo respectful and asked if they could pray with us before we did anything. I nodded. Then they prayed. After that, he very gently and caringly explained what they would do and when I would have a few more minutes with Jason before they took him. My legs felt weak and wobbley, I was numb,.. Angie and a couple of my friends walked me out of the room. They wheeled the stretcher in, and placed Jason on it with a big quilt. Then placed a rose on his pillow as they left that room. I watched them as they put Jason on the stretcher from a distance. Then when he was right at the door, they gave me a few more moments with him, asked me if I wanted them to cover his face. I said no, if you knew Jason, he was hot-natured and would not like his face covered. And they wheeled him out. I walked out onto the drive and watched until I could see the van no more.
I say all this, to let you know.. you are not alone... I remember it soo vividly... I still can't put anything where his bed was at... among other things, I am just not ready to do yet....
*hugs* my friend. I am sorry you know the pain and loss of the journey of ALS, but know, you are not alone in this. We all here are hurting, and reiling from the path of destruction left by the horrible monster known as ALS.
~ Becca
