Monday, March 30, 2009

Sean's birthday

Dear Brian,

Today is your brother, Sean's, 42nd birthday. We celebrated yesterday at their house. We gave him a collage of photos of you and your other brother, Michael, and your Guinness tee-shirt and your Boulevard hat. I love seeing bits of you on and in other people. It helps me remember you alive instead of the last few days of your life as you were dying that are currently embedded in my mind.

I was thinking that today I would share a memory of you and Sean. I wasn't around in your life for this memory, but I know it was one of your favorites with Sean. You had so many, but I know this is one of your "golden oldies." You replayed this one many times.

You were driving home from college your freshman year. Your parents had moved away from Pekin to Decatur, but you still had your high school girlfriend, who was a year younger than you in Pekin. Sean and Cheryl lived in Pekin, too, so you were planning on staying with them. On your way home, you had some car trouble outside of Springfield. You had to take your car to a shop run by a couple of local rednecks as it completely stalled out. You called Sean and Cheryl to come aide you. The local tow and mechanic shopped had a couple good old boys working there - one named Delbert. (Sean, I think the name is wrong, so correct me.) Delbert was an interesting looking fellow in his stained mechanic jumpsuit with embroidered nametag, greased up hat with mussed hair showing slightly underneath and a few missing teeth. Delbert was working some good old-fashioned diagnostics on your engine by grabbing a couple of wires simultaneously to see if they were "hot." They were. He jerked, buzzed and sizzled a couple times stating that wasn't the problem. As you and Sean and Cheryl looked on in amused amazement, the other mechanic stated, "Yup, that shocks the shit out of me, but don't seem to mind him none."

Your car was eventually fixed and you had your weekend fun. And we still enjoy reliving the memory.

Happy Birthday, Sean, on behalf of Brian, myself, Gavin and Grant.

I miss you, Brian. I love you.


Sunday, March 29, 2009

Dear Brian,

It is becoming more evident that you are not going to suddenly walk through the door or emerge from the bedroom. Yet, for some reason, I keep looking for you to do exactly that. Why? Why would I keep looking for you? I knew for months this was coming and that you would leave this earth. Why, then, is it so difficult to accept the permanence of your absence?

Why did you have to take your last breath when I was sleeping on the cot next to you instead of in your arms just an hour prior? Often I feel that if I would have felt your last breath then I would better be able to accept your death - that it would feel more real. Is that ridiculous? Would it be any different? Jan, your mom, wonders a bit why she wasn't awake holding your hand for your last breath, too. She thinks it would have been just too painful to witness - that you had to leave with the two women you love most near you, but just not touching you. Is that true? Would it have been too difficult and traumatic for us? Did you leave this world being ever compassionate towards us as you always were?

I can't express how much I miss you, Brian. I love you.


Friday, March 27, 2009


Dear Brian,

You flood my dreams.

The joy of seeing you there makes me long for more sleep.

The pain of waking to you NOT here makes me long for more sleep.

I miss you, Brian. I love you.


Wednesday, March 25, 2009

sea legs

Dear Brian,

The morning you died - March 17th, 2009, Mindi came around 5:15 am. We went to sleep around 6:00 am. As I was lying there with Mindi by my side instead of you, I asked her if she remembered that feeling you get when you have been on a boat all day - that feeling like you are still on the boat even hours after you get off the boat. I laid on my side - I could feel your heart beat. I could feel your breathing. I could feel myself on your chest in the crook of your arm listening to you and breathing you in, moving slightly with the rhythm of each breath. I had laid like that with you sporadically that entire day while your body shut down. I had laid like that with you for years. That was my spot. I told Mindi about the feeling - like when you get off a boat and still feel like you are on a boat. "I feel like I am still laying on his chest," I said, "and I hope that feeling never goes away."

Brian, it is already going away. I don't want my sea legs yet.

I miss you, Brian. I love you.


Tuesday, March 24, 2009

Happy Birthday, Angie

To my inspiration, my companion, my teacher, my sister but most of all my BEST FRIEND. Happy Birthday (one day late). You always post about other people, well, since I know your log in now, I am going to post in honor of your birthday.

Angie is a compassionate, strong, wise, intelligent woman. She is a wonderful mother, daughter, aunt, niece, friend and needless to say the most wonderful SISTER anyone could ask for. She is the one that is always willing to help when you need her. She is the one that will tell you the truth even if you don’t want to hear it. She is the one that I call for any advice I might need. She is funny and has a wonderful sense of humor, as I am sure most of you know.

She has taken so much interest in my family and helped me to be the mother I am today. She was the “sarge” of raising our children but it worked. She taught me how to get our kids to sleep through the night at a very young age and as some might think it is torture, tickling them and taking their clothes off when they are trying to sleep when it should be “awake” time actually does work. Tapping the bottle to make sure they finish every last drop of formula, really does work. Giving them three baths a day to wake them up, really does work.

When deciding when to come to Peoria over the last week, I was torn. I knew I needed to be there for her after the passing of Brian but I also knew she needed me before as well. I just got through telling my brother, Kevin, that no matter what happened, I was heading up on Tuesday after work, because even though she told me she had enough support during the tough times of the last days of Brian’s life, I knew there is nothing like having your sister around and I wanted to be there for her. When she called to tell me that Brian had passed at 1:00 am, I immediately turned to my husband, Matt, and said “I ‘m leaving, she needs me.” I drove 4 hours in the middle of the night because I wanted her to cry in my shoulders and I wanted to change the rolls for once and be her support and be strong for her so she could be weak, but I felt like I could get there fast enough, she needed her sister. It is times like this that I wish we lived closer to each other. I wish we could do more spare of the moment things together but at the same time, love the long weekends we get spend together and stay up until wee hours of the morning, just talking and reminiscing.

Being the younger sister, I am sure there was times that Angie thought why does she have to tag along again, but she never made me feel that way. She always had open arms for me and nurtured me throughout our childhood. She would help me get ready for school, sometimes do my hair or pick out my clothes. She even let me wear some of her clothes. She just cared.

I know she gets does not feel that she is this strong, amazing woman but she is far more than that too. She is powerful and inspiring to so many people, even one’s she has never met. She has this amazing talent of writing that so many can only dream of having (which hopefully, will some day become a book). We do everything together, we laugh, we cry, we smile, we play. Angie is my everything. I love you so much. Happy Birthday.

Monday, March 23, 2009

the first milestone

Dear Brian,

A couple of days has passed since we buried you. I finally feel up to writing something. Please forgive me for waiting. Please forgive me for being sporadic in the future. I have a lot of figuring out to do. I don't know who I am without you. I know that comment would make you mad, but it is true, nonetheless.

Friday was your visitation. Grant woke in the morning and immediately went and dressed in "church clothes." He came out in a polo shirt and nice pants - AND A TIE. You would have laughed. Did you? Can you see us? I have so many questions. Anyway, I told him he looked handsome and didn't need the tie. He said, "I thought I would wear a tie today." So, we got a button up and put his tie on. He looked so handsome.
Do you see how he had to have your cane close by? Anything to hold on to more of you.

We were all so nervous all morning. Then I saw you. I couldn't believe what I saw. You looked 15 years older. It didn't look anything like you. I was mad at first. I just wanted to see you again - one last time. I wanted to hold your hand. You were so cold and your flesh was so hard. It was terrible. It was then that I realized your soul is what made you beautiful. The soul gave your body life. Your soul brought a constant smile to your face. Your soul was gone and your body lied in front of me. It made it easier for me.

However, I think it was harder on our boys. They hadn't seen you since Saturday morning. I still think that was what was best for them because you could not carry on a conversation on Sunday, and on Monday you were in a terrifying state with the seizures before you passed in the wee hours on Tuesday. Still, when they saw you, you didn't look anything like their Daddy. They had a lot of questions about bodies and death, yet they did not appear sad.

Then we drove home for a couple hours before heading back for the official visitation for the public. Grant cried the whole way home stating how he missed you. It melted me. Did you feel the sadness? Is there sadness in heaven? I pray not.

Gavin asked questions all day: "Why can't we see his feet?" "What would happen if we opened his eyes?" "Why is he so cold?" "Where is his blood?" - all the things that are legit questions, but taboo to ask. You would have loved his piqued curiosity at the situation.

Gavin went swimming for the rest of the evening with relatives. Grant stayed in a chair by my side being held by various relatives crying and sleeping the entire evening.

Over 600 people attended the visitation and/or funeral services. Did you see them? Were you proud of who you were and the impact you had on lives? I was. Is pride a sin in heaven? I know the apostle Paul talks about none being able to boast.

The funeral service on Saturday was awesome. The music was amazing. We had the bagpipes you requested. Do you remember when you told me bagpipes would be cool at your funeral? We delivered. He was 83 years old and he didn't quite have enough wind. I personally thought he was flat and awful and it made me laugh inside. I think you would have made some crass comment if you would have heard him.

Michael and Sean, your beloved brothers, gave a heartfelt eulogy. Your best friend, John, also gave a humorous and dead on eulogy. One that compared your life to a game of Euchre. There was lots of Euchre played in your honor this weekend.

Kara played the piano and sang. It was beautiful. She sang I'll Fly Away and I Can Only Imagine. Kara's Dad sang Danny Boy and I'll Walk with God. I don't think there were dry eyes in the place. It was remarkable. The programs - OH MY THE PROGRAMS. They were incredible - beautiful, Irish, some art from the boys, pictures of you, a family picture. Just amazing.

The boys fidgeted and sort of fought during the entire service. They are 6 and 7 and that is exactly normal. Did you hear Gavin trying to explain about why leprechauns are real during the eulogy. I was laughing in my heart knowing that you would giggle at the irony of leprechaun talk during such a beautiful and serious moment.

We buried you a few miles down the road. It is a cemetery that we pass by often. I wanted to be able to visit your grave often. I wanted the boys to have easy access to your grave. There was a light breeze and just a touch of sun. It was lovely.

We had lunch at Northwoods church after. It was so perfect. The caterer had 4 plates remaining after all were served. We guessed. I guess we guessed correctly.

Your parents had a party that afternoon and into the wee hours of the morning. Your Dad called it an Irish Wake. I call it a perfect party. Did you talk with God about the weather? Did you know that well over a hundred people would continue to celebrate you at your parents house? It was supposed to be low 50's and cloudy/rainy. It was just over 60 degrees and wonderfully sunny. Our friends supplied the food. Our family supplied the beer. Your friends and family supplied the fun. It was perfect. It was exactly as you would have wanted it.

We had to celebrate our first milestone today without you. Today is my birthday. I know you know that. The thing is, if you were still on earth, I am not sure you would have known that. I know you would have had help remembering it. I was surrounded this morning for several hours with friends and family for breakfast. Tonight I am going out with girlfriends. We are going someplace where I have no memories with you. I don't think I could bear it. I know you understand.

I miss you, Brian. I love you.


Thursday, March 19, 2009

Here we go...

Friday morning starts the formalities.

Please pray for me as I see Brian's body on Friday morning.
Pray for my boys as they see the body of their Daddy for the first time since Saturday.
Pray for me - I have been experiencing a lot of anxiety in anticipation of this.
Pray for us - that we remember this time. I know it will be a beautiful representation of the kind of life Brian lived.
Pray for good weather.
Pray for all of us to handle this with the same dignity and grace that Brian displayed his entire life.


Wednesday, March 18, 2009

Brian's obituary

Just wanted to share Brian's obituary with all of you. Things are pretty crazy here getting everything planned and organized. Funerals are like planning weddings without the wardrobe issues in a matter of days without RSVP's. WOW! Luckily, I am surrounded by people who are helping with planning, organizing, singing, orchestrating, feeding, shopping and displaying. It is painfully enjoyable, if that makes sense.

Here is a copy of Brian's obit:

Brian's is on the right. You can sign the guest book and post comments there. You can leave private comments there as well if you are uncomfortable with anyone else seeing your words. Please know that I plan on printing out all the comments from yesterday's post, today's post and from the online obituary for the boys and me in the future.

The boys are doing okay. The grief comes in waves for me right now - sometimes it is high tide and sometimes it is low tide. Gavin has not expressed any sorrow yet. Grant cried, actually sobbed uncontrollably, for 45 minutes yesterday. He wanted to get back to Illinois and check on Daddy yesterday. When he arrived, I had to tell him Daddy was gone. While he seemed fine upon hearing the news, within an hour, he was not. There were no words to say. It was just a time to share his tears and hold tightly to him for as long as it took. He spent the afternoon divvying up the contents of Brian's wallet.

Actually, you know what, here is the text of the obituary. Why click again if you don't need to? The obit link will have the photo though. Going through photos makes you realize how often we do not take pictures of those we love with others we love or in places we love. Finding a photo of Brian alone was a painstaking process - or rather, finding one of him alone in which he was not making a silly face was a painstaking process.

DUNLAP-Brian Edward O’Neill, 36, of Dunlap, passed away at 12:45 a.m. on Tuesday, March 17, 2009 at OSF St. Francis Medical Center in Peoria.

Brian was born on November 2, 1972, in Hong Kong, the second of three boys of Ed and Jan (Fennell) O'Neill. After spending the first 5 years of his life in the Far East, Brian spent his entire grade and high school years in Pekin, IL where he graduated from Pekin High School in 1990 as president of his class.

Brian pursued higher education at the University of Missouri at Rolla (now Missouri University of Science and Technology) where he obtained a B.S in Mining Engineering in 1995. He was a member of the Kappa Sigma Fraternity, the Society of Mining Engineers and the social fraternity Theta Tau Omega.

Brian worked for Caterpillar for his entire career as a Marketing Representative. Brian's job took him to Peoria, IL; Chicago, IL; Denver, CO; and Edmonton, Canada.
Brian met his wife, Angie (Baer) O'Neill in college. They married on April 19, 1997 in St. Louis, MO.

He was a devoted and loving father to two of his greatest joys - his sons with Angie, Gavin (7) and Grant (6). He loved to watch them play sports, to take them to movies and to snuggle with them.

Brian's two brothers were another of his greatest sources of joy. He thoroughly enjoyed fishing and playing cards with Sean (Cheryl) O'Neill and Michael (Jennifer) O'Neill.

Brian loved his family - all of them - including his very large extended family and his wife's very large extended family. His grandparents preceded him in death - Leo O'Neill, Loretta (Johnston) O'Neill, Joseph T. Fennell, and Betty (White) Fennell-Breese.

In 1997, Brian began a battle with brain cancer. Brian courageously and valiantly fought the cancer until his dying breath on March 17, 2009.

Brian's impact on the world is immeasurable and his legacy will live on.

Funeral arrangements for Brian are as follows: Visitation: 4-8pm Friday, March 20 Wright and Salmon Mortuary 2416 N. North Street Peoria, IL 61604

Funeral: 10:30 am Saturday, March 21, 2009 with visitation 1 hour prior at Northwoods Community Church 10700 N. Allen Road Peoria, IL 61615

In lieu of flowers, the family has established a fund for the future education and upbringing of their children. Contributions can be made by contacting Jayme Bailey at Baird Financial 309-676-4160 or by visiting


Tuesday, March 17, 2009


12:45 am on March 17, 2009, Brian O'Neill left this world for the next.

I wish so much I could fill you with words of wisdom and inspiration. In essence, I feel nothing. No pain. No relief. No peace. No confusion. No. No. No. Nothing. Jan calls it numbness. I guess that is normal.

I wish I could tell you the last day of Brian's life was peaceful. It was not. You read my dear sister Mindi's posts about Brian's seizures. The look on Brian's face on Monday morning was not peaceful. It was one caught between a world view and a spiritual view. It was one caught between wanting to be a Dad and wanting to go to his heavenly Dad.

Brian, this morning, was obviously agitated and had not slept for the 4th consecutive night. He was illogical and strange in his movements. He was stroking my hair and trying to kiss me without being able to muster a pucker at the same time. The last words I heard Brian say were to me. I looked him square in the eye this morning, told him I was a better person for having known him, that it was okay to go and that I loved him.

He said, Yeah I love you too.

Then he struggled for the next several hours. I told him repeatedly it was okay to go. Jesus was waiting for him. His heavenly father loved him WAY more than even I love him or than he loved me or his boys.

We had to call an ambulance to get his seizures under control at the hospital. His oncologist urged us to do this. He knew we didn't want to go. He also knew we were not going to get this under control at home. He was, as he always has, thinking of our entire family unit.

I look for reasons. For answers. I am trying to make myself feel better and I realize this. I am not looking for affirmation, so please do not try.

I think part of the reason for Brian's seizures this morning was his desire to keep fighting for his boys. For his desire to be a Daddy for longer. For his desire to stay with me. He was looking me in the eye as he started to seize and lose control of his body. His spirit left us this morning. His body caught up tonight/morning.

Also, I think part of the reason, and I have to keep telling myself there is a reason because this did not happen according to my desires and plan - peacefully at home, was that the memory of this happening at home would have been too painful. He would have died inches away from me as I write this. I do not have a laptop. I am stuck in a room in the house writing this in a chair. A chair that would have forever been inches away from where Brian took his last breath and it would have been too painful.

I also think part of the reason is that the boys were with their grandma and grandpa in Missouri - surrounded by love and fun and joy. Brian would have wanted that. He would have wanted them playing and laughing and running and fishing. That is EXACTLY what he would have wanted. The did not witness the final hours of the struggle in Brian's life. I think, without them here, he was able to let go a little faster. I struggled with whether or not Brian would want them to see him as he was when the arrived home today. Brian and God took care of it. There is no question now. They will not see him as he was. The will remember him instead for who he was in their lives.

I wish I could tell you I heard Brian's last breath and I said good-bye. In reality, I succumbed to sleep and exhaustion from the day myself. I was laying next to the shell of a person that was Brian's rhythmically breathing body in the hospital bed. I was lying there and I finally got up and went to the cot next to the bed. I left his bed around 11:15 or 11:30. Jan got up around 12:30 and noticed he was not breathing. He was gone. I have to tell myself that he needed me to be on my own. He needed me to know that I have to now go through this life on my own two feet without his caressing of my face and hair and so he decided to leave after I left his bed and went to his side instead- NEAR, but not ON him.

I am glad Jan had the sense that told us he had left us. I am glad it was Jan and not me. There are certain things a mother knows that will never go away and I take comfort in that as a mother now. I am, of course, saying this to make myself feel better. But I am glad, too. I am torn, but glad.

I wish I could have been the one to tell you all the things I wanted to tell you. I wanted a peaceful, memorable experience. I wanted to tell the world about all the glory God showed in Brian's final hours. In the end, I don't know what to say. I am at a loss for words, (several paragraphs later, mind you). I will leave you with what I know Brian would want me to say...


Monday, March 16, 2009

Newest Update

This is Mindi again. I just got a call from Angie who again wanted me to inform everyone of what is going on. Brian is still unresponsive but seems very peaceful. His seizures have been under control since 2:30 pm. He only had a few and very small ones since being admitted to the hospital at 12:00 pm. The hospital tried some stimulus activities and Brian did not respond at all to them. The doctors are unsure if he will open his eyes again. He has a 36 year old heart and lungs that are strong and not ready to give up, so it is in God's hands of telling his organs it is time to come home. The amount of Morphine his is on is 4 ml/hr which is not enough to put him in this unresponsive state, so they are relating this state to the cancer growth. The seizure occurrence could have been related to a few items. It could have been that his seizure medicine that he normally takes has been thrown up the last few weeks due to his vomiting and his body did not know what to do without that medicine and starting seizing again or it could be related to the cancer growth that hit that part of the brain today. They have a couple of choices to make in the next hours/day. They can take him home but it would be pretty complicated. They would have to insert the PIC line, which is a minor procedure but non the less still a procedure Brian would have to go through. They only way to give him any meds now is through IV, so this would be a must. They would also need home health as the PIC line needs more medical attention than Hospice can give or they can keep him at the hospital. It is a tough decision based on not knowing how long or short it may be.
My prayer for Brian is that he is peaceful and comfortable with no suffering. If it is his time to leave us here on earth, we know he will be in a much better place living with our Lord. Keep believing.

Update: Brian O'Neill

This is Mindi, Angie’s sister. I am updated the post for Angie as she is unable to access a computer right now. I have briefly talked with Angie, so I apologize if some information is not accurate. Brian was having uncontrollable seizures this morning from 8:00 am to 12:30 pm. There was nothing they could do to stop these from happening. Even with the help of hospice and some other interventions, they would not cease. They took Brian to the hospital for this reason and soon after the admission, they got the seizures to stop with the help of Morphine. He is now a patient at St. Francis Medical Center in Peoria, IL (I am assuming, as that is where he always goes). He is now heavily sedated with the medications to have his body under control. His vitals are pretty good still, his blood pressure is normal but he is running a temp and his heart rate was 160 at the time of admission. I do believe his heart rate has come down slightly and his respirations have slowed down as well due to the medication. They have tossed around the idea of a PIC line to administer medications but the doctors and hospitals know the family’s wishes at this time for any other measures. They do want him to be comfortable and peaceful though.

The boys are with my mom, heading to Biehle tonight to return to Peoria tomorrow evening. We got to spend the weekend with the boys and had a wonderful birthday celebration for Grant as he turned 6 on Saturday. I think the boys have had a wonderful, enjoyable weekend. They got a little spoiled though. We took them to the city museum in St. Louis on Sunday and today they got to go to a place called incredible pizza where they rode bumper cars and played a lot of games. They have had a blast and it is such a blessing that they were not at home to witness the past couple of hard days that the O’Neill family has had. My mom will be staying all week in Peoria and longer if needed to help out Angie with the boys, so they are in good hands and will be taking care of with no added stress on Angie.

To the entire O’Neill family, we are praying for you. You have people all over this country/world praying and willing to help in any way possible. God will provide, weather it is for Brian to continue here on earth or for Him to provide you with strength during this though time, God will provide. Our God is an awesome God and remember to Keep Believing. We love you all.

Sunday, March 15, 2009

night shift

Last night, Brian was awake again... all night. He slept from around 10am to 2:30 or so on Saturday afternoon. Up all night Saturday night. He slept again on Sunday morning from 7:00 to 11:00. However, we did not give him any more of the Ativan/Lorazapan, so he is no longer having the jerking motions and hallucinations and sudden hanging-on-for-dear-life urges. So, when he is awake, it is a bit more peaceful.

We gave him some more Oxycodone to see if he would sleep again as that seemed to do the trick on Saturday morning. It did nothing. We have not tried the Haldol yet as we really would rather him sleep at night instead of during the day. We may try tonight if he does not sleep later.

Today, he ate almost nothing. Same thing yesterday. He is drinking about 20-40 ounces per day. He is outputting WAY more than that, so I am not really sure what that means. One thing that could be attributing to that, though, is that his shunt from his brain would be draining the excess spinal fluid into the body which eventually needs to be voided.

Last night, Sean, his brother, and I bathed him. It was challenging, but we got it done. Brian is pretty much totally unstable on his feet at all now. He could not stand without total support. He felt like he was falling a lot. I had to lift his feet to get him into position while Sean would move him to and from the commode to the bed and back. He lays very sideways in bed as his sense of balance is distorted, too.

His speech is pretty poor. His voice is quiet and he makes little sense. The beginning of the conversation is okay, but he trails off to something you cannot understand or cannot follow. He wants so much and tries to be a part of the conversation, though.

He has been vomiting quite a bit, too. It is definitely worse after he has been readjusted in bed or if he has been up and down (like after the bath.).

Brian needs constant supervision as he often tries to get out of bed. I don't think he would succeed as he lacks the strength, but he often states how he is going to go to the bathroom, to bed or to take a shower while pushing his covers to the side. We have determined that the night shift is exactly that, too - a watch and not a sleep session unless he starts to sleep again.

I slept the whole night through last night as Sean was here and I knew he would know exactly how to handle Brian. I was AMAZED this morning when Sean informed me that Brian did not sleep at all and talked the whole night through.

The boys are in St. Louis with relatives having a grand time. In their first afternoon/evening, they had a birthday party, an Easter egg hunt, a dance session on the driveway to Crazy Frog, a sidewalk chalk fest, cake, party favors and a game of Ghost in the Graveyard. Today they went to the City Museum, then played Light Sabers and swords outside this evening. My family is giving my kids exactly what we need right now while Brian's family is taking care of all our needs on the home front.

Doesn't this picture of the group celebrating life and birth with my boys melt your heart?

It does mine.

The only thing missing is their Mom and Dad. That breaks my heart.


Saturday, March 14, 2009

Eyes Wide Open

Since my last post, Brian has become increasingly confused and fidgety. He had not slept at all until about 9:30 this morning. That means from 9:30 on Wednesday morning to 9:30 on Saturday morning, he had slept a total of about 5 hours.

Upon hospice orders, we gave him Lorazapan/Ativan to help with restlessness. It appears after two night of this and increased doses of Lorazapan/Ativan, he is having an exact ADVERSE reaction to the drugs. Within a half hour of the dose, he is even more jumpy, fidgety and agitated than before. An increased dose simply exacerbated the problem, exponentially. We are now moving to another drug called Haldol. See ya later, Ativan.

Some very loving and caring relatives stayed the night last night so I could sleep as I was supposed to take the kids to their soccer games and to meet my mom to get the kids to St. Louis today. Well, when I realized Brian hadn't slept at all, I woke around 4:00 and laid with Brian, praying for peace to come over him. It was as if every time he would start to fall asleep, he would jerk and jump and convulse a few times and then his eyes would roll and he would start talking again over and over again.

Yesterday, Brian had a sudden surge in appetite. He ate a hamburger, half a milkshake, some sausage, an egg, a piece of toast, a pancake and some vegetables. He also drank quite a bit.

As of right now, my boys are in St. Louis being spoiled rotten by aunts and uncles. There is a birthday party scheduled for Grant and I truly believe this is the best place for them. I can't believe how much I relaxed and how free I felt knowing they were with people who know them and love them and are keeping a constant eye on them for a few days. It is liberating for me, so thank you to those of my family that I know desire to be with Brian and me, but are filling the needs of my children which is therefore helping Brian and me. I hope you have fun doing it.

Right now, Brian is sleeping peacefully for the first time in a few days. Tonight his brother is going to stay over helping out. I intend on cleaning up Brian and changing his bed. It is a two person job and a complicated one at that.

Well, that is about it for now. I feel terrible that I don't have a birthday post for Grant. I have it written, but have pictures that I need to insert as well. Maybe I will get it finished later.

I apologize this post is a bit all over the place. The last two days have been exactly that - all over the place.


Friday, March 13, 2009


Brian's decline seems to continue.

Last evening and night he had several issues with vomiting. He is drinking less and not outputting very much. Not to be too graphic, but he only pees about twice a day and hasn't had a BM since Sunday. Also, since Sunday he has only taken in about 8-20 ounces of fluid per day and about the equivalent of one package of Ramen noodles or half a sandwich in any given day. I offer every and anything to him as does anyone. He is just not interested in food or drink. For Brian not to drink shows serious signs of a change. He normally drinks about 64 ounces of fluid a day.

Brian is becoming weaker and less stable. He can not walk even a few steps anymore. He needs help getting in and out of bed and his chair. We take the wheelchair to and from the hospital bed to the La-Z-Boy now. When he does eat, it is in bed or in his chair. He no longer attempts to make it to the table.

Last night he became incredibly confused talking about the "help desk" at one point in time. Also, he and Sean and Murph - his brothers - were doing something related to cash. At one point in time he was doing a project for which he needed scissors. When I told him I was not getting him scissors, he got irritated with me and told me to stop talking to him like he was stupid. I felt bad and suggested he work on it later instead.

Brian seems to be fighting sleep like he did this night in February. I have given him a few different drugs to attempt to assist him with this. It seems like EVENTUALLY, when he finally stops fighting it, they work. He was up most of the night last night very restless. Trying to get out of bed a couple times, asking for his IPOD, trying to control his IPOD with the TV remote control, turning the TV off and on, looking around for the source of what he thought was a strange noise, etc.

He finally fell asleep around 10:30 this morning.

Brian's parents have spent the night every day this week. Brian's Aunts and Uncles are coming to the rescue this weekend while his parents attend a funeral. I have decided to send the boys to St. Louis to play with some cousins and aunts and uncles in lieu of staying around here. This is a tough decision as I do not know what phase Brian is entering and how much longer he has. Still, I think, with it being Grant's birthday and a couple days off school, they can have a nice time being spoiled and distracted in St. Louis. I pray it is the right decision.

Everything in me tells me this time is it. I know there is no way of knowing for sure. I spoke with his hospice nurse this morning to inform her of Brian's current condition. She suggested increasing some doses of Lorazapan which can help with vomiting and restlessness. The suppositories will also be effective in managing this. She stated, however, that we need to be prepared that Brian's confusion with his bodily function needs, his instability, his restlessness, his weakness and his lack of appetite are all signs of his entering a final stage of life. Not that we haven't experienced this before, but this week we have seen a continual decline in Brian unlike the other times.

Please remember that Brian loves to hear from you - even if you have written in the past - especially fond memories:

I don't know how to creatively end this post.

Please pray for us. I just want the peace and love of Jesus to surround us -ALL of us - including every one of YOU - in this time.


Wednesday, March 11, 2009

weak and weak

The last blog entry I wrote, I did so in a hurry and did not proof it, or 'do my REVISION stage' as Gavin calls it in his own writer's workshop. When did first graders learn about REVISION??? Anyway, as I re-read it, I had to laugh at my own haste and the following sentence:

'We have a suppository anti-nausea and I would like to try it, but Brian is not ready. I think we may do this when he wakes tomorrow.'

I would like to clarify, that I, indeed, meant I would like BRIAN to try the suppository and not myself.

By the way, he did and I think it worked.

Brian is doing much better today. He has not had any vomiting fits for the last day and a half now, which is, naturally encouraging. However, he is incredibly weak. He is quiet and a tiny bit withdrawn. He is upset regarding all the "fussing" over him - all the hovering when he gets up to walk to and from his chair, all the offers for food all day, all the "are you doing okay's?", all the hullabaloo. I explain why - he hasn't eaten much, he just about falls when he goes from point A to point B, he is weak, etc. He understands, but isn't happy about it.

Many of you asked about more hospice help. Until Brian can come to better terms with what is progressing and his weakness and instability, I don't want to bring in others to do what I can do. He WANTS to use the stairs and share a bed. He WANTS to take a shower. It kills him that he cannot. I don't want to bring in someone else to take care of those few things that I can do for him. I can clean him for now. We have a hundred family and friends that can come and spend the night to help out. We are going to take up those closest to Brian that love him the most before hospice help for such intimate functions. There may be a time when I need that assistance, but right now, I want to help Brian ease into this transition with as much dignity as possible. Does that make sense?

The boys are off school Monday and Tuesday, and we were supposed to try to go to St. Louis for an extended weekend. I do not see that happening unless Brian shows considerable improvement. His movement in any given day consists of getting out of bed and walking to the bathroom. Then he walks to the family room to watch TV. Then he walks to the table to eat lunch. Back to his chair. Back to the table to eat dinner. Back to the chair. Up to go to the bathroom and bed in the evening or night. That is it, and it takes a lot of effort and assistance for that to happen. Doing all that in another city doesn't appeal to me right now. Putting him in the car for 3 hours by myself isn't something I am willing to tackle given his current state. I would much rather be at home where we have what we need in case of emergency. Although, hospice has said they would give us support in any city we chose to visit, and we are coordinating it just in case. If it is something Brian feel passionate about, I will not deny him that and I will figure out a way. I know there are many that would assist.

Grant's birthday is Saturday. We are thinking of sending the boys to St. Louis anyway so that they can have a distraction and some time away from all this. I am not sure exactly how we are going to handle the timing of all that yet. We are waiting to see how Brian is doing each day.

Well, once again, the time has escaped me. And my typing fingers are keeping up my sleepy hubby. I will write more tomorrow.


Tuesday, March 10, 2009

dizzy and sick

Brian awoke on Monday morning and vomited right away like he has been doing every morning for the last week. Most days this lasts until around 11 or earlier. Then he is fine. He has been getting a tad weaker - probably due to not eating much and small progression. However, on Monday, he suddenly lost his balance around 9:45 and vomited all day - about every 20 minutes until around 3. Then he stopped vomiting for a few hours until we moved him to the hospital bed around 8:30. He was unable to walk without significant assistance and even then, we were pretty much holding him up. There was no way we were going to get him up the stairs. He was not happy about the decision, and after a few caddy remarks, he agreed - JUST FOR ME. Whatever. I will take it.

Anyway, he began vomiting again around 8:30 and continued to do that every half hour until around 10:00. He fell asleep around 10:30 and slept most of the night. I lifted both the bed rails, put the bedside table next to one side and slept on a mattress next to him on the other side. I did this so he would not unexpectedly try to get out of bed in the middle of the night without my hearing him as has happened in the past when he was not in a good condition. So, I slept rather fitfully afraid of the above circumstance occurring. He wretched and coughed a couple times throughout the night, but slept pretty well, I think, all in all.

This morning, he woke and was extremely dizzy getting to and from his chair. He has not had any more to eat than 1-1/2 Ritz crackers since last night. He feels like he is going to vomit just about as soon as he takes a bite of something. Naturally, this makes him weaker. He vomited twice today as well. It is nothing more than stomach bile and whatever water he recently drank. We have a suppository anti-nausea and I would like to try it, but Brian is not ready. I think we may do this when he wakes tomorrow.

One big issue right now is getting him cleaned up. He has not had a shower or shaved since Friday due to his condition. He would like to, but he is unable to get up or down our stairs to do so. Even if we did have a way to transport him up and down the stairs, the wheelchair doesn't fit through our bathroom or bedroom doors, so no matter. I guess I will need to sponge bath him as best as possible soon.

He hasn't been out of his chair for any reason as of yet today, so I have no idea how his stability will be tonight.

And now I just looked at the clock, realized we have to leave for soccer in 30 minutes and I need to feed the kids, so that is all for now.


Sunday, March 8, 2009

wit and wisdom

As promised, I have decided to bequeath you with some Angie wisdom and wit.

I was going to start with my evaluation of The Bachelor, ABC's ridiculous reality show. I can think of nothing more UNrealistic than this reality show. A man speed dates several women, makes out with most of them and in 6 weeks' time falls in love with several, proposes to one and usually breaks up a few months thereafter. I refuse to watch this show as I believe it exemplifies perfectly what is wrong with our relationships and marriages today - a lack of commitment and earnest effort towards making things work. Anyway, I did attend a bachelor party - or a Bachelor VIEWING party. I went to make fun of my friends who actually DO watch this show - for reals. I dressed in all white, carried my lace clutch, donned my pearls and wore my hair in an up do with my wedding veil - all in the spirit of total mockery. (and I would post a photo, but I didn't remember my camera and my friend that took the photo STILL has not sent it to me.) I also gave a running cynical commentary during the entire airing. That'll teach my friends to invite me to their earnest partyn for the sake of "some color."

What upset me most about this particular season was that this man, who subjected himself to a public breakup and on-screen heartache in a previous season of the Bachelorette, thus bestowing the same humiliation and pain to several women this season, is a single father. And he exposed his 3 year old boy to this confusion and unrealistic view of relationships and morals ON SCREEN. ABC, you have sunk to new ratings lows allowing this child to be brought into this mockery of courtship.

On Saturday night, I saw this perfect summary of this season of the Bachelor and how Jason will explain it to his son some day:

I figure why go through all the effort to be witty and wise when someone else has done it for you.

My second snippet of wit and wisdom is in regards to the child's haven, Chuck E Cheese's, which I am renaming Future Gamblers of America. I am convinced that Chuck E Cheese's is owned by Harrah's Casino and is grooming the next generation of Riverboat Regulars. Whatever happened to the Showbiz Pizza of yesteryear - the place where we played Pole Position and MsPacman, etc. - games that took our token and we actually PLAYED? My children now go through 20 tokens every 12.7 minutes mindlessly dumping them into random games of chance - games in which you watch the mesmerizing wheel go round pushing a blinking button 1.4 seconds later hoping it lands on the jackpot of 25 tickets so you can get a sub-standard dollar store piece of junk that will be destroyed before you reach the car to go home - causing a melt down of epic proportions. And I pay money for this - lots of money. Honestly, Chuck E Cheese's has morphed into slots for youth. Unfortunately, it is one of the only places to go in this town on a cold winter day and still get out of the house with kids.

You're welcome for walking away a little more bitter insightful today after reading this.


Thursday, March 5, 2009


Realizing that I am overdue for an update on Brian, I apologize for not getting to this blog lately. I tried to go off my medication these past weeks to see how I did. Well, combine that with a certain time of the month, Brian's condition, fighting children and bleak weather and you have a recipe for disaster. I should have known. Now that I am back on my medication, I am going through getting my levels adjusted which includes headaches and fatigue for me. I am getting along better now.

But, enough about me, I know you come here to read about Brian.

In the last week, Brian has continued to get just a little worse. His speech is hit or miss. His mornings are awful - he is dizzy and often has vomiting spells. He has fallen three times in the last week. He is getting gradually more unstable and slower. He is very tired, but doesn't really nap. His memory is awful. He must ask me 20 times a day what we have going on that day/evening. He does not remember many recent visitors, but does remember some. He pretty much eats two meals a day still - one small and one microscopic. He doesn't really snack, either. And he is still stubborn as hell. Where 'stubborn as hell' apparently means 'stubborn as his Grandpa(s)'.... 'or Dad'.... 'or nephew'.... 'or Mom' depending on whom you ask.

One thing that brings much joy into Brian's life right now is reading the emails people are sending to the account we set up for him. His brother, Sean, brings them over once a week and Brian lights up when he hears from a total stranger that is touched by his courage and faith. He laughs and nods when he hears from an old friend relaying a particular memory or reliving old times. He delights in seeing pictures from friends and family of old times or their current families and locations.

Please keep sending those. Seriously, Brian's long term memory is not affected, so he takes great pleasure in reminiscing since he knows his short term memory is failing him.

When I get more motivated, I will write something profound again. I know you are all dying for my wisdom and wit again.