Opening Up Letting Go Ch. 10

Chapter 10 Live Laugh Love Lose

As Jack's body continued to deteriorate we found ourselves behind the eight ball in preparedness. Frank and the boys pulled together a team of friends and co workers as they worked with surprising speed turning the garage into a master bedroom, installing a sunken shower with a little ramp so I could wheel Jack into and out of the shower. Equipment was being delivered on almost a daily basis to make his life and my life a little easier.

The king size bed "craft-matic dual adjustable bed as seen on TV" made the biggest impact on our lives by far. Since June, Jack had been sleeping on the recliner while I slept on the sofa next to him. Eight weeks of sleeping on the sofa took its toll on me. I had to admit I was worn out. God it was wonderful to climb into bed again, with my Jack right next to me.

That first night we held hands lying side by side until we fell asleep in total comfort. The next morning I tried to wake him with that ill fated blow job. I felt it important to christen the bed. Afterward we lay in bed. I held his coffee to his mouth giving him sips as I sipped mine.

Josh had decided not to go away to college. A decision I wasn't happy with at all. He deserved his turn to live in a stinky dorm room, wear stinky clothing because he would resist dong his own laundry, and deal with keeping track of his life on his own.

We argued and argued but that kid can be so stubborn! I gave in when he broke my heart, when he reached into my chest and pulled away the protective covering I had placed there.

"My father is dying! At his rate of progression we'll be lucky to have him with us at Christmas. I am not leaving his side no matter what you say."

"Shut your mouth! Not another word, do you hear me!" I grabbed the counter top to keep myself from falling. Everything was going white; the blood was pounding in my ears. My legs felt weak, I couldn't hold myself up anymore. I was going to lose my bowels or vomit, one of the two would happen any second now, but all I could do was slowly sink to the floor.

"Mom, are you alright?"

I felt Josh's arms around me but I couldn't focus on his face. I waited for the vomit to come.

"I'm sorry Mom. God you don't know how sorry I am. But I can't pretend it isn't happening. It's happening. We're losing him and we can't stop it. He needs you now Mom. He needs you to be strong for him."

Josh was crying now. I could hear the sounds of my little boy crying coming out of the grown man who was holding me.

"Soon he won't be able to talk at all. He already chokes on his food and I'm trying to convince him to allow a feeding tube. Do you realize how much weight he's already lost? You weigh more than him now Mom. Think about that. You weigh more than him because he is too tired to chew and swallow. Are we supposed to watch him starve to death?"

I vomited. Why was he doing this to me?

"No more pretending for you and me. No more Mom. He needs you and I need you. Together we're going to make him comfortable. Together we're going to keep his last months with us real. We're going to be real happy, real funny, really prepared, and really convincing that a feeding tube would be less painful for all of us. We're going to let him know that when he's ready to go, we will let him go."

"Let me go." I struggled to break free of my son's grip but he wouldn't release me. "Let me go!"

"No, Mom, you're not going to hide in the closet any more. Remember hiding with me? Remember how I closed the curtains in the house and pulled you into the closet? Remember how safe you felt? I'm still here, you're still safe. But now you have to help dad feel safe."

"What?" Help Jack feel safe? That didn't make any sense.

"He's afraid you're going to force him to live for years and years completely locked in. It's medically possible you know. Imagine being wide awake and not able to move anything, not even open your eyes. Imagine not being able to even move your eyes balls, forced to stare at one scene all the time. Imagine being completely helpless, more helpless than a newborn because even a newborn can communicate through crying. Are you imagining that Mom? How safe do you feel imagining such utter helplessness?"

"But they might find a cure? Stem cells might work? If he can just hang on until we find a cure..."

"The stem cell project won't even be testing those who have progressed to his stage for another two years and that's only if phase I proceeds without any safety issues. You know all this Mom. Two years down the road, maybe. But I'll be damned if I'll allow him to live locked in during that whole time hoping the stem cells even work. They aren't even embryonic stem cells, so there's more that can go wrong. No, I won't allow you or anyone to torture Dad waiting for a long shot."

Josh pulled me forward so he could look me in the eye.

"He needs to be given control over when he's had enough. He needs to hear from you that when he says it's time, you will let him go. Let him go Mom. This is his decision not yours. Let him go!"

"But I don't want him to go..." I could say no more and could only cry as I silently repeated in my head; I don't want him to go but I have to let him go. No! Have to let him go? No. Have to let him go. No, I have to let him go.

Oh God what had I done to my son and my husband?

"Oh Josh, my God, my God, I'm so sorry. Again you save me from myself. You deserve a mother not a blathering idiot. I'm so sorry Josh. My little boy Josh, I'm so sorry." I babbled on for a few more minutes before Josh spoke again.

"Tell me you will let him go. Tell me you will tell him. You need to say it Mom, you know this is how it works."

"I'll let him go Josh. Dear God forgive me. I'll let him go when he decides no matter how much it hurts. I'll tell him that when he's ready I'll hold his hand and kiss the fear away. I'll tell him we'll meet again. God, oh God, I'll tell him to save a place for me and that he'll always be with me." I could say no more than that.

Josh held me for a while and told me I was doing the right thing. I was brave and strong enough to get through this. How did my son come to sound so like my husband?

I wiped my eyes and looked at my baby son. "You sound just like your father, you know that?"

"Yeah, so I've been told. Dad says I sound like you, you say I sound like him. You both are alive and well in me."

"Yes, alive and well in you, my son."

And so it came to be that I was prepared to allow my husband the dignity and control over his death. When I had that conversation with Jack it was difficult for both of us, to say the least. But it was oddly liberating to express our fears to each other. As the pretenses slipped away the strength and courage came pouring in. I don't think I'll ever be able to understand how that worked. I remain grateful that it did, that Jack was able to take strength from me, when he needed it.

Jack did agree to have a feeding tube surgically implanted. Once he learned that he could still eat by mouth and could even have a beer poured down his feeding tube, he was all for it. Eating was tiring but it remained an enjoyment.

My ardor for lovemaking cooled significantly after we had that conversation. I simply couldn't bring myself to be greedy, to seek my own pleasure. I only wanted Jack's pleasure. Guilt can do a horrible thing to a mind. My guilt for having almost forced the death of my husband prematurely in order to avoid a fate worse than death was just too much for me to bear.

I woke him up each morning seeking his release. Usually I was successful. His speech was almost completely incoherent by the end of September and we eagerly awaited the arrival of a special computer. It was called an eye gaze system. A camera mounted on top of the screen tracked and followed the movement of his pupils. When he blinked, it was similar to a mouse click and whatever letter, word or hyperlink the curser had been resting over was now selected.

As far as ease of conversation, it lacked in a huge way. The boys would simply say, "It sucked big time!" I found myself in agreement with their wording. He could communicate yes, but it was so slow and halting that he rarely had much to say unless he was asked a direct question.

"This isn't so bad, is it Jack? I mean we're both comfortable, we're together, you're not in pain, we can hang on like this for a while, right?" I had put him back in bed after his shower then I went to take mine. He had been playing around with his computer waiting for me to finish.

Yes, I was still holding out hope he would hang on and stick around. But in my heart of hearts I saw how it pained him to be on the outskirts of everything. How many times I saw him begin to type something into his eye gaze only to have him give up because the conversation had moved on. Yes, his quality of life was nothing like it had been a mere seven months ago. But currently, his life did have a measure of quality and that had to mean something?

"no not bad is good when u r quiet long so i can talk" Appeared on his screen.

"Yes, I am impatient sometimes. You will let me know when you want me to shut up and wait for you to respond?

"dont know how cant make it do 2 thing at same time u see i type u wait"

"I can do that easily my love. I'll just have to find a way to be patient while you prepare what you want to say." I leaned over him and began kissing my way down his bare chest.

"You are bad nurse" the computer animated voice said.

I cracked up laughing but continued my path downward. Once I reached his cock, which was beginning to respond I said, "Don't you mean Naughty Nurse?"

I looked up at him as a slowly engulfed his cock. This always got him and this time was no different. But as I focused on my work my eyes closed of their own accord. I ministered to his growing cock with every bit of love I felt.

"Takes to long to spell." Said the voice again.

"You know, when you talk in that computer voice it feels like I'm sucking the cock of a robot!" I laughed around his cock as he spluttered out his laugh.

It felt so good to give him happiness, to lay naked together, no pretenses between us. We were getting good at finding joy in strange places.

His cock was taught and I doubted another drop of blood could fit into those glorious blood vessels. I played with his balls as my mouth worshipped his cock.

"Get up get on give me tit in mouth"

As I climbed up to straddle his cock we both heard the boys laughing and making noises. Then Braden yelled, "Would you two knock it off! At least turn the volume down for Christ's sake."

Once upon a time that would have horrified me. But today I thought it was the funniest thing I'd ever heard. I've never reached a climax so quickly, while laughing with joy and being so filled with such love.

But as I came down I noticed Jack's eyes were glazed, half open not focused on anything.

"Oh my God I fucked him to death!" I quickly climbed off him and slapped his face to see if he responded. "Jack! Jack! Wake up Jack!" He wasn't responding!

"Boys! Get in here now. Oh my God your father!" I grabbed a robe and went to the door to unlock it. They came rushing in, Josh already dialing.

They went to their father and someone pulled his computer out of the way while someone pulled his sheets up to cover his cock. I stood frozen in place until someone yelled to put my robe on. Mechanically I complied not taking my eyes from Jacks face; willing his eyes to open again.

"He's breathing!" I heard someone say.

"His finger nails are blue, he's not breathing enough! What do we do?"

The next thing I remember Josh was carrying me to his room with a pile of clothing on top of me. As he laid me down on his bed he warned me not to come out until I was dressed. The ambulance crew was already here, already giving dad oxygen. I had to get dressed to go to the hospital.

As I put my panties on I felt the wetness between my legs, a contribution from Jack comingled with my contribution. I wondered if it was possible to keep those two fluids right where they were, forever. Later, I would think about that later. I emerged from Josh's bedroom to see the stretcher wheel my husband out of our home. He still wasn't moving, God Damn it!

At the hospital they worked on him for what seemed like hours. All three boys were there, Frank had arrived shortly after we arrived. Someone had called him to let him know what was happening.

Finally the doctor came out and we were all shooed into a private room. Did anyone have a copy of his advanced directive, the doctor needed to know? There was supposed to be one on file here but it was a detail we never revisited since that night of the pizza confrontation.

"Why, what's going on with my husband?"

"As best as we can tell, I'm sorry Mrs Wright but your husband has suffered a heart attack. Under normal circumstances we would ventilate to keep him breathing while we hope his heart heals. We have gotten a weak pulse back but it remains weak which indicates the damage to his heart muscle is extensive. The ALS complicates advanced medical intervention. We need to know what he would want us to do."

All eyes turned on me. "No! This isn't supposed to happen like this!"

All three of my sons looked to me with pleading in their eyes. It broke my heart.

"Tina, we've had this discussion. You know what Jack wants. You have to make the call." Frank took hold of my hand. I could sense the conviction he was sending me through the places where his skin touched mine. I heard someone say "be strong, you can do this."

"Let me see him." This was not a request and that doctor had better get his ass up and take me to my husband. I thought I had been ready to duke it out with the doctor but it was Josh who wouldn't let me go to Jack.

"Say it Mom. Tell me and everyone else. He needs you now."

I couldn't stop the tears falling from either of our faces and for once, I had no wish to stop them. Each drop was a physical reminder of how much I love him; loved him. Always love him, always.

"My husband doesn't want any extraordinary measure taken to prolong his life. Should he suffer complications that might appear to prematurely end his life, separate and apart from ALS, he wishes to allow nature to take its course. No extraordinary measures. Do not resuscitate."

At that both Frank and the doctor stood. Frank pulled a large envelope from his breast pocket and quietly handed it to the doctor. The paper work that Frank, God Bless him, allowed me to ignore while I needed to ignore it, and act on their contents as my husband had wished me to. Because eventually, I would have never been able to live with myself if Frank had been forced to step in and insist Jack's wishes be carried out.

Frank came over to me and wrapped his huge arms around my waist, guiding me toward my husband, keeping me from falling, giving strength I so desperately needed.

About two months after the funeral, Frank stopped over to see what needed doing. We sat at the kitchen counter top while he sipped a beer and I sipped a root beer.

"Tina, Jack would be proud of how well you're doing. You know he asked me to keep an eye on you and he warned me what to look for. He even told me what to do if I saw the signs he was most worried about. Gotta say I was scared shitless agreeing to that."

We both laughed at the absurdity of this huge man being afraid of little me.

"My husband died happy. I fucked him senseless and let him go. I sent him on his way with a bang. Gave him a tip to make sure he'd save a spot for me."

"Yeah, the boys told me. You realize of course there is no better way to go? It's every man's dream to take his last while buried deep inside a woman he loves. If I didn't know better, I'd think..."

"No need to go there Frank. He was my husband and I take care of what's mine."

** Dedicated to someone I love