Tuesday, December 25, 2012

Merry Christmas

I hope that everyone had a fine Christmas. Our little men had a great time and got all the toys they desired. They are only 4, but they are already questioning the legitimacy of Santa and his elves. Just the same, they still enjoyed the magic of the season.

I recently took them to Utah for a week while Dave was out of the country on business. Ronan fell out of bed on our first night in Salt Lake City and broke his collar bone - right in two. He had an x-ray a little over a week later, just after our return home and there is no progress on healing, but he shows no pain. He says it hurts all down his arm, his whole arm hurts, but he is as active as ever. He really doesn't like wearing his sling, but he needs to for at least another few weeks.

William has been having some difficulties of his own. He had a high fever most of our trip in Utah and is having some other problems that we need to monitor. Neither of my boys are in good enough shape to travel, so I'll have to make my next trip to Utah on my own. Besides, airline tickets are costly and I don't want to drive over Donner Pass with them in winter.

While in Utah I put up a fabric Christmas tree (Margareta from Ikea) in my dad's room and decorated it with family photos. My aunt and sister sang Christmas carols to him and he came to us the best he could. He was the most alert I've seen him in months. Every visit is heartbreaking, yet also heartwarming. I will miss being able to hold his hand and put my head on his chest, just as I've been doing since I was a baby. When he's gone, though, I know he'll be closer to me than he has been in many years.

I will be headed back to Utah soon. The life support will be turned off from my father any day now. I have mixed feelings about this. I believe it is for the best, but it is tough to not have second thoughts. It's very difficult to plan someone's death. It's very hard to celebrate Christmas and be bubbly and exuberant for those around you, those who just want their lives to continue unaffected by my crises. The boys, especially, need the magic that comes with Christmas. I've done my best for their sake, but inside the cracks on my reserve are getting bigger and I'm breaking.

This is the first Christmas without my father, yet it's also the last Christmas with my father. This middle zone is a very sad place to reside. I've been grieving for 7 months, as have the rest of the members of my family, yet we cannot begin to mourn.

Thursday, October 4, 2012

I miss my dad.

He used to call me every day, sometimes several times. Sometimes he'd call to complain, other times he'd call to joke. On the last day we spoke, we had many conversations and somehow I knew it was important to make the time to fully talk to him, even if the boys were destroying the house as we spoke. We talked about many things that day, but mostly Eastern medicine and philosophies. He was interested in trying acupuncture and I told him I'd find him a clinic. We also talked about Buddhism and other interesting religious philosophies. My dad was so smart and so well-read. I loved learning from him.

And then in May the phone calls stopped coming, he was gone. I had lost my father. Technically, he's still alive, if you could call it that. He called me late on May 7th complaining of a terrible headache and feeling ill. He said he believed it was from his new medication, which does carry those side effects. He lived with his wife and two teenage sons, so I thought they were near, but I didn't know they had already gone to bed in other parts of the house.

He had been recovering from open-heart surgery and through his recovery, he fought tooth and nail whenever anyone suggested he return to the hospital through a few complications he suffered. My conscience told me to encourage him to return to the hospital asap, but I didn't follow it for fear that we'd fight about it. Instead, I suggested that he drink some water and try to sleep, and to call me in an hour or two if he couldn't sleep, and at the very least to call me in the morning.

A call came in at about 6:30am. It was my brother, one of the boys living with my father. They found him collapsed on the laundry room floor, apparently after trying to get that glass of water I told him to get. He had been alone that night, after all. Had I known it, I would have either called an ambulance or called a relative to go check on him. I have a hard time letting go of that call, letting go of the guilt I feel for not following my gut. I think we are all carrying out a certain amount of guilt, even though the medical staff caring for him has been assuring us that the outcome would have been the same.

They rushed him to the hospital in an ambulance. He was apparently somewhat coherent, I learned later, enough to ask his wife not to take him to the hospital but to let him stay at home. Dave and I packed up our things and drove with the boys immediately to Utah. By the time I arrived, they had operated on him. They found that he had a subdural hematoma and a clot.

The best I can piece together is that a few days prior to this he may have fallen and caused a slow bleed in the back of his head. Due to medications he was on, the bleeding was made worse and the pressure caused a stroke. He never really woke up. There are times where he seems more alert than others. After a couple of months he was able to open both eyes, but it seems that he cannot see. His pupils appear to be non-reactive.

He is on a ventilator and cannot speak. After a month they put in a tracheostomy tube so that he wouldn't have to have the tube in his mouth. He has been on life support ever since. I've visited as often as I've been able, usually bringing the boys with me and once spending the night on a chair at my dad's bedside. I've read to him a lot. He seems to like Winnie the Pooh stories and poetry by Emily Dickinson.

It's so heartbreaking to see him like this.

"I'm not afraid of dying, it's feeling sick all the time I don't want. I either want to live and feel good, or I'm okay with dying." That's what he told me before his heart surgery. He has had a very incredibly difficult last 5 months. My sister has been amazing through it all, spending every moment she can spare to see him and following up with every option and avenue of treatment, also coaching and helping my dad's wife with all of the paperwork.

Now he's back in the ICU with another infection and a clot in his lungs. My sister warned me to be prepared, that it can be any day now. Or, if more treatment is offered, perhaps invasive, he could be like this for a few more weeks, months, who knows?

It looks like I'll be back in Utah in the near future. It's tough with the boys. If I go without them, they don't sleep and they cry a lot, then we spend a lot of time dealing with residual separation anxiety. Also, if I leave them behind, we need to figure out child care. In this area child care starts at about $15/hour. If I take them, it's not easy to spend the time with my dad, though I did manage to spend a few hours each day with him last month, for nearly two weeks thanks to a wonderful aunt of mine.

I don't want him to die, but he can't live, not in his body anymore.

I miss him so much!

Feeling Heavy

It has been a very long time since I've written. It isn't due to a lack of content, perhaps it's due to too much content. I feel heavy with it and overwhelmed. Where do I start?

The boys are in their second year of preschool. Ronan loves it. William seems to enjoy it once he's there, but he protests going every time I mention it and he doesn't want to be apart from me. They'll be eligible for kindergarten next year. Registration is in January. We need to look at the schools, consider all of our options, and probably enter them in the lottery for the school of our choice, if our choice is not to keep them with our resident school (or to wait another year before enrolling them). With the high cost of pre-kindergarten, I'm not sure that is an option.

They love to cuddle and help me, but they also love to turn every situation into something for playing, including trips to the grocery store or wherever. It's tough to reign them in when they are active in their play, which could be anything and any place. I'm exhausted!

There is also much I'm not sure I want to share. I wonder how much privacy to hold and how much to divulge. I'm not just talking about for myself, but for everyone around me. The boys have their lives to lead, their friends will someday perhaps find all of this information I'm putting out there about them. Maybe even their future employers.

However, this is my form of a baby book, scrap book, and journal, and it's the best way I know of sharing our lives with our loved ones who live so far away. We have had a rough past few months and are trudging through difficult times. 2012 may not be the end of the world, but it is a dark time. With my father dying in the hospital and with our home being burglarized over the summer, I'm trying my best to keep my head up and keep smiling, trying to keep up with these two wonderful boys who need regularity, structure, stability, and optimism in their lives.