The White Room...

On the whole....
We have all either had the kids / seen the kids / or been the kids (that incorporates everyone) who would protest at the thought of being tired and not want a nap. Yet when the magical slumber finally overtakes and does it's battery charging, the protester wakes up with a new outlook on life. As we grow and mature in emotion we learn coping skills to listen to our bodies instead of covering up that little voice that says "I don't wanna".

I am learning that this is one of the things that my daddy is losing. As his body and mind get tired; he fidgets, mumbles, arranges imaginary items and slips more into that confused state where all time lines become one.


I wrote the above last night after Daddy had gone through several hours of being tired but not wanting to sleep. Even as he was slumped over in his chair he still wouldn't let me lay back his recliner and kept waking himself up to do imaginary sorting tasks. It is so hard. I feel for him. I can see when reality hits him that he hasn't been his usual self and it scares him to be out of control of his normal behavior. Watching him deteriorate from cancer and chemo...I used to think it was a cruel thing. Now that his short and long term memory is failing I think it is the most horrid thing for a person and their family to have to cope with.

I know that the stories I relate here can be overwhelming and heart breaking to read and imagine. If they get too much to bear, it is okay to not read. I understand. But I want to encourage you to read beyond the pain and continue to see the ways that God is bringing us comfort and showing we are never without Him. With God.....well there is simply no other way I could have the strength to bear all of these heart wrenching months and still find joy in things.

This morning Daddy woke to thinking he was in college and I was one of his fellow peers. While I never pretend to be someone I am not, I do go along with his dreams now because it is less stress and trauma for him. Usually he will simply give up on the dream and commence to enjoying whatever I set us to doing. I convinced him that we didn't need to be in the living room (he called it the lecture hall) and we could instead bundle up to head outside to the patio (he called it the commons smoking area) for a cigarette break.

He marveled over his dogs and was very worried that they would get lost in the yard (he called it the campus) but I assured him we were in a fenced area and they were safe. It was quite a blustery morning and I offered to go back inside to fetch a blanket for his legs much to his thankfulness. I was gone all of maybe 15 seconds.

When I returned with the blanket he looked at me with tears covering his face and said, "What is your name again?"
I pleasantly said, "Oh it's Julie."
Instantly pain, shame and fear became his expression as he threw out his arms to me and blubbered, "Oh Julie my baby girl! My precious angel baby! I didn't know who you were! I am so sorry!" Then he threw the blanket off his legs and patted his lap. "Come on baby. Come sit in your daddy's lap and let me hold you please. Oh my baby. My baby girl."

As careful as I could, I did balance myself into his lap.....because that has been such a wish of mine all these months....the comfort of being in my Daddy's lap one more time.

He switched into protective father mode and ushered us into the house out of the cold, tears still streaming as he marveled over his little girl. I offered him some breakfast and asked what he desired. His response was, "Baby girl anything you want to do for me would be wonderful. Just surprise me."

I walked over and gave him a hug and that brought on a fresh wave of deep soul wailing as he sobbed, "I will take that over anything any time. I am so sorry I wasn't a better father to you. I should have done so much more."

I held his face in my hands and said, "Oh Daddy, You are the best daddy in the world and I am so proud you are mine. I wouldn't change anything."

At that point my cousin walked in for a quick visit after getting off night shift in ICU. I was so grateful she stopped by. Poor thing didn't know what she was walking into but took over for me for a few minutes. She had Daddy tell her about his dream in hopes of being able to shake it off. He said that when I went to get his blanket, some people ushered him into a white room and told him to sit down. Then they all began looking at one another and asking the question, "Do you think he is ready?" "No not just yet." They all looked at him and said, "No you aren't ready yet."

When he told her that part, the tears came fresh as he said, "I wanna be done. When will it be enough?" He grabbed our hands and pleaded, "Please pray with me." We prayed for peace, we prayed for comfort, we prayed for clarity. Then he settled down and went to sleep.

That was all in the first hour or so of the day. The rest of the day has been pretty uneventful for him as far as drama goes. My step sister came over to be with Daddy while I got out for a few hours of reprieve and errands. I met with one of Daddy's work friends for lunch. She is such a sweet young woman who thinks of my daddy as kin to her own in her heart and I thoroughly enjoyed our time together. Afterward I did things like cut my hair, bought our grand daughter her birthday gift and shopped for groceries.

Once I got home I met with the hospice nurse and did our mid week check up. I ordered care for a bath aide to come in three times a week and also for us to have delivery of a hospital bed. Daddy is not going to like that at all but I will have to cross that bridge and tell him eventually. I think at this point it is better to have it here and not use it than to wish we had it and not have it. Our nurse again stressed to me that even though Daddy is confused now, there will come a time soon when it will be more so. She made it clear that whoever needs to see him while he is clear that they really need to do it now.

Physically Daddy is getting around well with his walker and has good strength. Sometimes he even grumbles and rolls his eyes when I catch him trying to walk unsteady without his walker. I am working hard at getting his calories into him every day but so far I have only succeeded in 1000 per day. I can't use the feeding pump anymore because the tubing confuses him so much. His "figure things out by taking it apart" persona wants to do just that when he sees this strange tube coming out of his belly OR when he wakes in a dream state it is simply too much for me to wrestle with as I deal with imagined places and people. So every 1 1/2 hours during the day I bolist his feeding and water into his peg tube via syringes. Before this last round of chemo he was doing 2500 calories per day. Eventually I think this 1000 calories will take a toll on him but I am doing all I can do and don't chide myself for it.

And life is still going on in other areas of my heart as well. Dear Pippin had the wonderful experience of serving jury duty this week. It was quite a journey for her to get the time off work and venture downtown on mass transit to the city courthouse across the river but she did and I just know this has all been one of those milestone growing experiences for her. I am so proud of her.

Puddin, my baby, is about to turn 17 years old in 3 short days. Hubby just had parent teacher conferences last night at her school and heard glowing reviews from all. You gotta know how exciting that is to hear as the mama. She is handling her school schedule with extra zero periods and then social life with being one of the band drummers for youth and singer for adult worship very well. I am proud of her too.

Father God I thank you for your care, your grace, your mercy, your love, your presence and your never ending encouragement. Thank you that even when Daddy was so desperate today he knew that You could make things better. Thank you for clear starry skies tonight and the cool wind that blew today giving me a ticklish reminder of home.