The question I know you all want to ask….

What are Angie and boys going to do now?

I know you want to know. Wanna know HOW I know you want to know? Cuz many people, even barely acquaintances actually have enough gumption to ask me. Others just casually feel me out with indirect questions. Others that know me well expect I just may growl at you if you ask me that.

And I know included in the "What are Angie and the boys gonna do now” question are things like – Employment for Angie – when and how much? Location? House? Can they afford their lifestyle? Benefits? Etc.

And here’s the answer. I DO NOT KNOW.

And it sucks getting asked because I feel like I should know. It isn’t as if Brian’s death was a huge surprise. It isn’t as if I am not logical and intelligent and can’t figure things out.

In fact, I think sometimes my predisposition to over-analyze and logically think through EVERY SINGLE DECISION IN MY LIFE, including what color to paint a bathroom that can easily be repainted, is what is preventing me from knowing exactly what to do from here.

First thing first, though, is that I am exactly identifying my financial status. Since Brian’s death, we have received AMAZING generosity from friends and family. In March, we took a voluntary separation package from Caterpillar that has allowed me to have this time to think things through and figure things out. That being said, Brian and I have always lived within our means, practically and frugally on a budget that had us giving our tithe to church/charity, saving for our future and college and splurging on a few unnecessaries. So, we have no debt except our mortgage putting the boys and me in a better position. I have no doubt that it is our obedience to God’s biblical financial rules yielding this reward today.

However, we cannot go on forever like this. It is just a matter of figuring out exactly how much investment income we can generate in addition to our social security survivor benefits. There will be a shortfall with those two combined, and that will determine when and how much I will have to work. When the boys turn 18, the social security survivor benefit will expire completely and I, then, will have to solely support myself on my income.

There are several factors with determining employment for myself. First of all, I do not feel that I would be a good employee at this exact moment in time during this season in my life. I am easily distracted, have a lack of attention span and cry at the oddest times. So, I want to take a bit more time and give myself time to grieve and come to terms with whatever the heck our new normal is. Once I determine how much of my life is spent doing things for the kids that cannot easily be delegated or requested of friends like homework and quality time and the support they need from immediate family, I can better determine how much I am WILLING to work. However, if finances dictate that the amount I NEED to work exceeds the amount I am WILLING to work, the NEED will outweigh the latter and we will figure out the rest. I do not think we will be forced into that situation, though, barring another market crash.

Additionally, in order to give my boys stability and support, my goal is to work enough for this first couple of years to basically just get by without saving much for MY future. I will always save for college. It was one of my and Brian’s biggest goals to give to our children what our parents gave to us, and that is a college graduation that is debt free. I feel I would be dishonoring Brian to not strive for that. However, once again, if our finances did not allow for it without a huge compromise to our lifestyle and our emotional well-being, I know it would be MORE dishonoring to Brian to compromise OURSELVES for a debt-free college graduation.

There are many factors to consider when contemplating my future employment, not the least of which is the obvious – WHAT would it be. Should I do something related to my experience in accounting, business management and finance? Should I take a less demanding job because we don’t need the money at the risk of getting farther away from my experience and a well-paying job when I DO need to go back to work with a higher paying job when the boys finish high school? Do I just start all over now that I am older and wiser? I just don’t know. I trust that God will provide answers through the right opportunities.

When considering employment, I realize that full-time work would take me away from my boys a considerable amount in a time when they need a lot of direct involvement. They aren’t really capable of doing self-directed, independent homework and won’t be for a few more years. Their homework is family homework and they both need me now to help with this. They want to be involved in a few extra-curricular activities and to add single-parenthood, full-time employment on top of basic school would almost wipe this away. I just don't know how I would swing it all for them and for myself BY MYSELF. I also realize part-time work that meets our financial needs may not be possible. I am not naïve.

Other factors to consider are when and WHERE?

Obviously, the most glaring question many people have is WHERE IS ANGIE GOING TO LIVE WITH THE BOYS? The answer once again, is I DON’T KNOW. For now, we are staying put. I have no intention of going anywhere this school year unless we felt remarkably led by God to do so. I want to give the boys and myself time to figure out life here without Brian. Figure out things like where do I want my boys to call home? Right now they know little other than Central Illinois as home. Figure out things like where can we afford? Figure out things like where do we have the best support system? And that changes daily. It changes as our support system of family and friends have their own changing commitments and lifestyles. Sometimes Grandma and Grandpa are around for a ton of help and sometimes they want to travel. And we want them to. They need to. We don’t want anyone to feel like they are tied here solely because of us. And sometimes friends can help with rides and time with the kids, but then it changes when their own sports, work and extra activities take their time. And that is to be expected because once again, we don’t want anyone to feel like they can’t do their own thing because of us. HOWEVER, if full-time employment is what was necessary for us, I would have to go where I had the best support system and I felt the most comfortable knowing that my kids would be in the care of family and friends A LOT. I, honestly, do not know where that is right now. I am taking this year to figure this all out.

It is no secret that I have no family in Illinois at all. My closest family members are 3 hours away and those are extended family members. CLOSE-KNIT extended family members, but my immediate family is 4 hours away. However, Brian’s family is within a few miles of us, and he has many extended family members also within a few miles of us. But, will this relationship change as things unfold in our lives? I like to think it wouldn’t, but I have witnessed too many examples being on the biological side of a relative's death to know this may be naïve thinking. I know it will take a lot of effort on both our sides to ensure a healthy relationship that allows both sides the graces they need to grieve, live and cope.

Additionally, moving right now to a comfortable support zone of MY family would force me to solely rely on family and very old friends in a place where I have never lived on my own. It would be in a town like St. Louis where I have not lived since I graduated from college, let alone as a parent. Or, if I opted to be closer to my sister and mom, it would put me in a small town environment that I have never been a part of, losing all of the individuality of the friends and connections I have made in Illinois. I would partially be starting all over, all the while determining WHERE to live, WHAT works best for us, not knowing how much support I truly need and IF we can do it here. And you know what? I have great friends here. The best and closest friends I have ever had in my life. I feel connected to them and I feel connected at my church. Starting all that over right now is not overly appealing.

And, to top all this off, I know that the support I need today will differ from the support I need in a few years. The boys’ activities will get more demanding later, but rides MAY be easier to arrange as they age and don’t need parental supervision at Scouts or practices, or it may get more difficult depending on their interests. I don’t know. Also, their homework will become more independent. I will be able to grocery shop or run a few errands without having them in tow in just 3-4 years when they can start staying alone for an hour or two at a time. And that will only increase from then on. Gavin will be in middle school in less than 4 years’ time. AAAHHHHHHHH!!!!!!!

So, as you can see, YES, I am constantly thinking this through. I have a lot of decisions to make and for right now, just the day-to-day decisions of what to have for dinner are difficult enough to make while we heavily grieve for Brian. Then I have larger, but immediate decisions to make like benefits coverage as our COBRA amount quadruples next month. And how long do the boys stay in counseling now that we have to start paying privately? And I still don’t know for sure what color to paint my bathroom.

And then there is the guilt for knowing that I DO have a college education and am perfectly suited to work a well-paying, full-time job but just not wanting to do it right now because I know it would not be what is best for my kids and me emotionally, but would really make some decisions easier and make saving for college and benefits a no-brainer. (All that experience and education, yet still ridiculous run-on sentences) So, don’t even get me started on feeling under the microscope knowing that my closest friends and family (especially my parents who gifted me with that education) have to be thinking – “Why the heck is she doing this when she is educated and employable?” And I realize that most of the guilt is probably self-inflicted. This is what I do to myself.

But my motto for the last few months and for the next couple will continue to be - "NO BIG CHANGES FOR A YEAR". Different seasons and events unfold different challenges and perspectives.

For future reference, to anyone who is dying to know what someone who is handling a large life-change like a divorce, a death or job loss is going to do from here, DON’T ASK. I know it is well-intended, but I can tell you if they want to talk about it, they will. THEIR THOUGHTS ARE CONSUMED WITH IT ANYWAY. And they don’t want to be in their position of HAVING to think about it at all. (And also to let you know that 12 months ago, I also would have asked anyone that was going through this the SAME questions.) Rather, just say to that person “I know you have a lot of decisions and very difficult choices ahead of you. I will pray for you as you think things through. But, please take the time you need to make informed decisions and if you want to talk things through, I’m here to listen. (Although they will always be willing to talk if you want to tell them about that great part-time, work-from-home, $50,000/year job you have been dying give to them.)” And then – PRAY FOR THAT PERSON AND THEIR DECISIONS.

You can start with me.

KEEP BELIEVING

*edited to add* I didn't write this post to make anyone feel bad for asking me what we are going to do next or for wondering what we are going to do next. I wrote the post so you can have a glimpse into the hundreds of "If- Then's" that enter my mind daily, and to let you know where I am with the decision making. Because honestly? If you haven't walked a few steps in these shoes of mine (and my size 5 wides would not fit many of you, and I pray they never do - literally and metaphorically speaking), you simply wouldn't know how many factors and variables there are to complicate even the slightest decision. Like the fact that I suck at painting, so choosing the wrong color means more work for the friends and family that help me. And that every BIG decision I make right now will greatly impact THREE of us. My children are my first priority in all decisions right now.

stepping up

Dear Brian,

It is no secret that in the aftermath of your death, the boys lost their male role model. Because of this, I have to step up and take on some testosterone induced activities in order to let our boys be boys. This is so counter-intuitive to me, but I know it is necessary.

Earlier in the week, I took the boys to the St. Louis City Museum and climbed through some structures that I would have never considered a couple years ago. Also, I took them to the St. Louis Zoo and looked at nearly every exhibit. You loved the zoo. I don't love the zoo, but I loved it through your eyes and now I love it through their eyes. My own eyes would rather see the inside of the St. Louis West County Shopping Center.

Just yesterday, I took the boys on 4-wheeler rides. I even had to disconnect a trailer attached to one of the 4-wheelers. My hands and shirt were grimy and greasy upon completion, but I figured it out and we were on our way. Also, I took the boys to the barn at Memaw and Papa's to feed the goats and climb around on tractors.

Tomorrow I may even take them fishing and play in the hayloft.

Did I mention that your friend, John, is coming tomorrow with his own boys? That may help a bit.

Baby steps.

I miss you, Brian. I love you.

KEEP BELIEVING

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.

KEEP BELIEVING

looking a gift horse in the mouth

Lately, I feel like I have been looking a gift horse in the mouth.

I can't make sense of the origin of that phrase and I have no idea if I used it correctly or not. Brian loves to tease me regarding my incorrect use of my limited vocabulary or my mispronunciation of a word or my confusion of a commonly used cliche. So, if nothing else, it is good for a laugh.

Seriously, though, I feel as though lately, with as good as Brian is feeling (Does one feel good or does one feel well? For the purposes of this blog post, Brian is going to feel good, but if someone corrects me in the comments next time he may feel well.) we are not spending our time just enjoying it as we should be. You see, just three weeks ago, Brian was showing all the signs of someone succumbing to the progression of this disease - the memory issues, the balance, the speech, the vomiting - all are signs of the disease taking over the brain. Then, we quit chemo. A week later, Brian's memory was restored, his balance and speech improved and his vomiting subsided.

And for the last two and a half weeks, Brian has maintained a very promising quality of life. So much so, that it raises much question amongst myself and many others as to whether or not Brian could be showing signs of improvement in the areas of the tumor progression. Was it the chemo that helped that? Or was it getting off chemo that helped with his current condition? How could we tell for sure?

One way to tell would be to have another MRI performed. But then what? The doctors would never say that Brian is cancer free again. I know my God is capable of healing Brian, but my heart and my mind are colliding here. While Brian is showing signs of improvement in the memory and balance categories, in the last two weeks his right hand has lost a little more function and his speech is hit or miss. His speech is markedly worse than it was in October when we found out the cancer was growing again, but only marginally worse than it was in December. He has been having some issues with vomiting here and there. He vomits in the morning about two to four times a week. Also, his memory, while better than it was two weeks ago, is not up to the status it was a month ago.

So it continues to beg the question - if we did another test, THEN WHAT? Based on Brian's current condition, logic tells us that the tumor is still progressing some or he would have the function in his right hand and leg returned. He would be speaking clearly. He would have energy and endurance. He does not. So, if an MRI shows that the cancer did shrink some in the cerebellum and brain stem, etc causing some improvements in his memory as a result of the chemo, does it matter? Brian remembers almost NOTHING from the week and a half in early January when he started to take a sudden turn for the worse. He doesn't remember the good or bad moments - not the doctor's visit, not Spamalot, not the vomiting, not the falling, etc. If the chemo did shrink things, having Brian in the condition he was to get to the point where we are today is so not worth it. It was not quality time. I would even go so far as to call it terrible.

Does this make sense?

And why do I write this? Why am I unloading all of this and writing out these thoughts and the conversations Brian and I have had over and over the last three weeks?

A few weeks ago Brian was so bad that the doctors and I thought Brian had, at best, a few weeks remaining. We made a decision to get under hospice care and move forward from there. Our assumption was that Brian would continue to decline. That has not been the case, so it makes the decision to go under hospice care and cease treatments confusing for many. Many people assume hospice means that the very end is imminent. I am getting many questions from friends and family as to why we aren't considering more. It makes it very difficult to accept our decision and carry on right now. Brian and I have talked the issue into the ground. We have thought it through and prayed about it. What we are experiencing with Brian right now with respect to how good he feels, is a gift. It is a gift of time and life we didn't think we would have. Why is it that is not enough?

I spoke with the hospice nurse yesterday regarding Brian's condition and progress. I explained that it is confusing how he has improved so much. It is difficult to accept the decision and live out our days right now. She explained that Brian is young. He has this shunt which is probably helping. There is no formula for what to expect from here. But, Brian does show slight signs of worsening - the vomiting, the weakening of the hand, etc. They are slight and slow and that is good. Hospice has a sometime unfair black cloud that follows its name. We wouldn't be under hospice care if this was not what was best for Brian and our family.


Brian's doctor knew the last chemotherapy would probably not do much for Brian based on how his last two scans had looked. Yet, he took a risk and gave us hope for one more shot. It was not overly surprising to him that Brian's disease progressed anyway. It was devastating to him. He cried with me in his office as he wrote the order for hospice. He did not want Brian to be in this situation any more than we did. We have done all there is to do. He was there with us every step of the way - believing, hoping, laughing and crying.

So, being under hospice care doesn't mean we have all given up. It simply means we have moved on.

And I want to enjoy this time. I feel like I am not enjoying this time because of the pressure coming from myself, friends and family to consider Brian's condition and what to do from here. I feel like we haven't come to peace with our decision and I want to come to peace with the decision. I want to live what time we have remaining in peace. I CRAVE and BEG for PEACE!

Please pray for peace in this decision and this time. The boys included. It is confusing to be told Daddy is dying and to spend our time with him and then to see him improve. It is encouraging to see him at one of their soccer games, then it is scary to see him unexpectedly vomit in the morning. Gavin thinks he should go to the children's hospital where he went because they are good at making people better. He has told me there are other doctors that can still help. Why won't we try them? Why won't God heal Daddy? Doesn't He love us enough?

He does love us enough. He has given us this amazing quality of life and some time to enjoy it. Please pray we maximize it.

KEEP BELIEVING

What about you?

What have we been up to the last week?

Visiting with friends and family:

Playing:

Watching others play:

Celebrating birth:

Celebrating anniversaries of birth:

What have you been up to?

KEEP BELIEVING

things that make me smile

Lately, there is so much joy around us. The overall mood in our house could be so solemn and somber, but it is not. It is one of joy and celebration. So many things make us smile...

Gavin scored two goals yesterday in his soccer game. Who is this child? Where did he come from???

My Dad proved that at 62, he has the best headstand of all of us in the family from ages 4 to 62- his being the steadiest and strongest. It makes us smile.

Brian feels so stinking good. SO GOOD, lately. He is still feeling like he would rather do chemo right now since he feels so good. I explained to him again last night that the week and a half after chemo last time was hell - he was miserable, weak, tired, confused, unsteady, falling, nauseous, and sleepy. He didn't remember our trip to the doctor again and what the doctor had told us to understand why chemo isn't a good option anymore. I told him that for the first time, after seeing him the way he is right now, I would rather have weeks of this than months of him the way he was when he was doing chemo. The way he is right now makes me smile.

Brian loves me. He loves being in the room with me. My mom told me when I am gone he misses me and every time he hears the door open he looks around for me. That makes me smile.

I informed Grant that when he smiles instead of frowns it makes me smile. Smiles are contagious. So now he randomly walks up to me throughout the day and shows me a forced cheesy missing tooth smile. It is contagious, I tell ya.

A humongous roll of paper from a friend that can keep 4, 5 and 7 year old boys busy so we can watch the Superbowl - all smiles.

This weekend, we get to meet our newest niece - McKenna. That makes me smile.

We got some great notes from some family and friends that Sean, Brian's brother, is gathering on his behalf. If you have something you would like to share with Brian or a funny story or something that reminds you of him or something inspirational or just anything you want to say to Brian, please send an email to :

brianoneill1972@yahoo.com

Sean is bringing them by once a week and they make us smile.

A full rack of wood for fires the remainder of the winter makes us smile:

Who doesn't smile when they see a baby covered in baby food opening like a baby bird every time the spoon comes near??

A fart that makes everyone in the room do this - well it doesn't really make me smile, it actually is kind of gross, but it made my brother, who dealt it, giggle uncontrollably.

Catching up, visiting, and talking to friends and family as if no time has passed since the last time we saw each other - THAT makes us smile.

KEEP BELIEVING

What you can do for us

I would like to start this post off by saying, WOW!!!

As you may or may not know, Brian and I come from large families. Between the two of us, we have over 50 first cousins. FIRST COUSINS. We have over 30 aunts and uncles. We have cousins with kids and kids of cousins with kids. We have friends from all over the country and beyond (eh?). We have a large church. We have groups within our church. We have amazing neighbors. We have co-workers. We are blessed with PEOPLE in our lives. Then there is this whole thing called the BLOGGING world. There are real people I have never met that read this blog and people that we have not seen in years that read this blog. I didn't know the extent of this until just this week. I mean, I knew, but I didn't KNOW, you know?

And everyone wants to know what, if anything, they can do for us. WOW!!!

I am getting bombarded with phone calls, emails, texts, facebook messages, comments, etc. asking what anyone can do.

I am coming to a place in my life that I realize people WANT to do. My mom has told me that if I do not let people DO for me, I rob them of the joy they receive from DOING. So, I am learning to accept help. I am learning that I can ease my burden when I allow others to enter my life and do something that makes them feel good.

In order to help with this difficult time, there are several avenues that anyone can take. Please, PLEASE do not take this as a solicitation for ANYTHING. This is actually very awkward and uncomfortable for me.

Practical:

Brian's first cousin Karye Setterlund has agreed to be a contact point for all things practical - meals, errands, groceries, insurance, cleaning, etc.

Here is her contact information if you are interested in helping in any of these areas:

Karye Setterlund

karyes@cmcousa.com

309-691-6930 (home)

309-922-9239 (cell)

I am keeping in close contact with her as needed each day as far as what meals we need (none right now) rides for the kids, groceries, errands, etc. This will ease my phone burden which is heavy some days.

A few tips, though:

• If you bring a meal, disposable dishes are most appreciated. OR please be willing to come back and get your plate - forgiving me if it is not clean when you arrive.


• I don't care about brands on anything unless I specify.


• I do not use any particular brand of laundry detergent - whatever is on sale.


• If we are not home at the time you came for whatever reason right now, it is cool enough to leave just about anything outside for a while. I check the front porch frequently as I find treasure there from little angels frequently.


• Be patient with me and thank yous. I am historically bad at this and right now, I am scatter-brained. Please give your information to Karye so I can thank you properly, though,

Encouragement:

Please know that I am reading the comments. Every last one of them. Sometimes I have time to reply. Sometimes I do not. I am trying, but some days it is overwhelming. The emails coming in for me to relay to Brian - I have to admit - do not always get relayed. I get distracted. I read them, but then delete them to keep the inbox clean and forget the details. If anyone wants to send Brian a specific note, please feel free to email this account we have set up:

brianoneill1972@yahoo.com

Brian's brother, Sean is going to monitor it regularly, print out any and all notes for Brian and bring them to us. A hard copy is still best for ensuring we read these wonderful words together. Or if you would rather send us an actual card or letter, please feel free. You can email the above address and Sean can get your our address or you can email me and I can do it if you don't have it. Every time we get a letter from someone that describes how Brian touched their lives, I see him shrug - like what did I do? I am just being me. I have told him the amount of people he has impacted has surprised even me who knows and understands how amazing he is.

You can continue to send me emails and comments for encouragement. I also facebook (Angie Baer O'Neill) if you are looking for me there. I read every single letter, etc. from everyone. I have to tell you I find great comfort in hearing from other widows. It is strange, but it lets me know that I can do it. That the boys and I will and can be okay. They are also incredibly honest. Something I strive to be. I don't want anything sugar coated.

THE KIDS:

I am trying to keep things as normal for the kids as possible right now. I do not want to shower them with gifts and sweets and other things to ease the pain as I do not want them learning to turn to such things for comfort. I want them to face their fears and grief, address them and work through them with me or whomever else can help them. This is NOT to say that an occasional pack of gum, action figure, video game, trip to the Spotted Cow or a movie isn't a nice gesture. I just don't want it to get overwhelming and I don't want to draw more attention to them than already is. Playdates are good. Letting kids come here on good days keeps things normal for them so they feel comfortable in their own house and letting them know our house is open to friends is important to me. Some days, though, they just need to get out - to get away from the visitors and the hub-bub. Grant is home every afternoon at 11:00, so I think I am going to try to set up once or twice a week playdates with friends and cousins (hello Brody) to give him something else to focus on.

Financial:

Please, PLEASE do not take this as a solicitation for ANYTHING. This is actually very awkward and uncomfortable for me, but many of you have asked.

I am in the process of establishing some sort of a fund/trust in Brian's name. I am meeting with a friend/advisor to assist with this on Friday. The fund would be used primarily to help with the children's education and well-being including medical and dental coverage, etc that we will lose in the event of Brian's death. For those of you who don't know, Brian was diagnosed with this disease only one month after we were married, so we have only the life insurance available through his work. Brian and I are very smart and frugal with our money. We live within our means and do not do anything extravagant. This fund would simply allow us to continue to do that for as long as necessary until I could find the right job or pursue the best avenue for employment that is best for the children and me in the event of Brian's death.

My main goal is to keep things stable and secure for the kids. I do not want to make any rash decisions about jobs and moving out of panic. The economy is not the best right now. I would never allow the children to lose this house and our livelihood. I would do whatever it took to maintain that. The generosity that many of you have already bestowed upon us is helping that to be a reality without drastic measure. Mind you, though, I would take drastic measures if need be. However, I know that for the next X number of months or years, my boys will need me. They will benefit from the security of my being the one to get them to school and get them home from school. They will be dealing with not having a daddy around to play sports with and to read to them and to watch them when they learn a new trick or score a goal or catch a fly ball. This breaks my heart and I know it will be painful to them as other dads are helping coach, practicing with their kids, assisting with homework, or simply cheering on the sideline. I want to fill as many gaps as I can, especially in the near term if possible.

I would also like to be able to do charitable things in Brian's name and memory if God allows. We have been blessed a couple times by such organizations and nothing would give Brian more pleasure than being able to bless someone else in our situation some day.

So once again, PLEASE DO NOT THINK I AM ASKING FOR FINANCIAL ASSISTANCE. Nothing could be further from the truth. Some have told me they have prayed specifically about this and as awkward as it is for both of us, who are we to deny God's nudging? I prayed for financial provision. I didn't pray for it to be anonymous. I should have been more specific. I think God is trying to teach me something about humbleness and gratitude.

I have to say it again - PLEASE DO NOT TAKE THIS AS A SOLICITATION FOR FINANCIAL ASSISTANCE. PLEASE! Economic times are rough. We are currently blessed. There are many blessing us each day as I write this now. There are many who do not have what we have now, and who will never have what we will continue to have even when Brian does pass. So, I can't shake the guilt of this regardless. Please know, though, that should you feel lead in this way, integrity is not something I would ever compromise in any aspect of my life - financial included. Does that make sense?

Karye is the contact for this as well.

Whew, I said it..... And I lived.... Okay....Breathe....

Visits/Phone calls:

There are so many that want to visit, see or talk to Brian. This is to be expected and we encourage it. You read above that we have large families, so crowds to us are nothing new. Due to this, though, we cannot guarantee that there may not be someone else here when any one person or group is visiting with Brian or me. I like people. I need people, family and friends surrounding me and supporting me. They distract me, make me laugh, comfort me when I cry and fill the gap when I can't make it across the gorge. Please know that if the visits are too much, I WILL SAY SO, so don't feel like you are over-imposing. I will be honest. I will do what is best for Brian, the kids and me. In saying that, though, we have a two story and a basement. If the best thing for Brian is quiet and solitude, but not for me, I can still have visitors retreat with me to the dungeon. I am learning that this process is not just about Brian. It is about all of us.

Okay, back to the point. I will still be the contact person for visits for Brian. Please don't feel like you are overwhelming me right now. Visits during the day are pretty good actually, as Gavin is at school and Brian is more alert. Monday and Tuesday evenings are not good as we have soccer. Any other evening is doable, but we will not overdo this because it also can cut into our family time that we are cherishing right now.

I know weekends are best for many due to work, travel, etc. So, PLEASE DO NOT FEEL LIKE YOU CAN'T COME OVER FOR A VISIT IF SOMEONE ELSE IS HERE. We do not know how much time Brian has remaining and weekends are the only option for many. That is just the way it is. If anyone is uncomfortable with that, just know it isn't coming from us.

AND I WILL SAY ENOUGH IF I FEEL IT IS ENOUGH. I am being honest. I told my girlfriend the other day that I needed her gone by 1:30 because hospice was coming for the first time. I hated saying goodbye to her, but I had to do it. I told some friends the other day that I needed them gone by 12:30. It was hard, but not as hard as the first time. I called a friend and cancelled a dinner plan tomorrow night because I have felt overwhelmed this week. It wasn't THAT BAD. I told my MIL I wanted her to come at 10:00 tomorrow so I could have the majority of the day to myself since Grant has a playdate. It felt good. So, really, I will say enough is enough. I am getting good at it.

Best hours for a visit:

10:00am to 3:00pm

not good: Monday and Tuesday evenings.

Other decent times:

weekends, evenings 4-7 W-F.

Best hours for phone calls:

10:00-4:00 Mon-Tues

10:00 - 7:00 Wed - Sunday

Brian is a man of few words right now. He is having some speech issues so I try to help out as much as possible, but most phone conversations are brief.

That about sums it up. I feel like a pushy, bossy, demanding little thing, but I think this is what people were looking for. If I offended anyone, I didn't mean to, but I can't apologize right now.

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How we are doing - Jan 26, 2009

I am dedicating this post today to tell you how Brian is doing, how I am doing and how the boys are doing - emotionally and physically, since I think I have made it pretty clear that spiritually we are doing well.

Brian -
Brian has had a great last few days physically. He hasn't slept much during the day. Cognitively, he is very "with it" and is remembering a lot more than he was early last week. He still has some issues with suddenly thinking an event that happened many years ago was very recent, or not remembering something that just happened, but only once or twice in any given day. Physically, Friday and Saturday, he was great. He had energy and maneuvered the stairs with confidence. He has not fallen since I last wrote about it on Wednesday. However, on Sunday, he said he felt his right hand and arm starting to get weaker. Still, he managed to get up, shower, get dressed (with a little help), eat a small breakfast, go to church, and then GO OUT TO LUNCH with some of our friends. It was such a successful day. He took a nap yesterday afternoon, but honestly, that is to be expected. He has had several phone conversations with friends and family. His speech is faltering and struggling, but he is able to eek out a conversation.

He is eating very little. He says food doesn't taste the same. He does eat some, though. He has lost around 8 pounds in the last few weeks. But don't worry, I am making up for it. Wait, on second thought, worry about it.

Emotionally, Brian is coming along. Friday evening and Saturday, most of the day, he was pissed. He had pursed lips and just kind of bounced his leg most of the day. He says he feels strong enough to keep fighting. Why not just try chemo again to see if it holds things off for longer? If he felt terrible, he could easier accept and stop fighting. So, I have explained to him that from the time of the CT Scan to the MRI, in just two weeks, the cancer popped up everywhere. It is in the leptomeninges, cerebellum bilaterally (both sides), brainstem and visible spinal cord on the MRI of the head. In hind sight, the symptoms he was having in October with the ventricles filling up and not draining was probably the beginning of this progression. The symptoms he had in December with the sudden vomiting and balance were signs of the worsening of this condition. The most recent scan simply confirms it. I ask him, "Why would we take more medicine that makes you weak and tired if it isn't helping?"

This conversation kills me. I feel like I am telling Brian to give up, like I am crushing his spirit and optimism. This man who has so courageously battled and so optimistically confronted every obstacle in front of him is now being told by one who has stood by him through every single moment of it all in the last 11 years that it is time to be done. MEDICALLY. I told him if he wants to keep fighting, then we turn all that energy and attitude directly to his spiritual healing. We give it all to Jesus. He says that is a given. He always gives it to Jesus. He is having a hard time not doing anything else medically.

Over the last few days, he is coming to terms with it. He is less angry. He does not sulk or become withdrawn. He is the same Brian as always.

Gavin and Grant:
I think they are okay. I have explained that the doctors said they don't think Daddy is getting any better and there is no more medicine to help Daddy's cancer. They ask me if Daddy is going to die. I explain that yes, Daddy is probably going to die. Naturally, to a 5 and 7 year old, there is no concept of process. When they pick up a golf club, they think they are going to get a hole in one each time rather than understanding things are gradual. They then ask me if Daddy is dead in the other room. "Mom, check on Daddy. He might not be sleeping. Maybe he died." They have questions about what Daddy will look like when he is dead, " Will we see blood? Will we see his bones?" I explain that no, it will not be like Star Wars or Pirates. Daddy will become more sleepy and then he will get sicker until he stops breathing and then he will drift off to Jesus. There will be no blood or bones or oozing.

I spend a lot of time reassuring them and confirming their emotions. Whenever we talk or they have questions, I tell them it is okay to be sad or mad or scared. Mommy is a little of all those, too, but we will be okay. The most important things is that Daddy loves and trusts Jesus, so he will go to Heaven to be with Him. We will go there some day if we believe the same things, but we have to stay here on Earth until Jesus thinks it is time for us. We have to spend a lot of time with Daddy making sure he knows we love him and doing fun things with Daddy.

I have explained that we will have lots of help from their grandparents, friends, aunts, uncles, and cousins after Daddy dies and while he is sick. There will be lots of people calling and visiting because everyone wants to see Daddy. So many people know and love Daddy and want to spend time with him. They will see nurses coming in and out of the house and there may be more things daddy needs to help him move - like the wheelchair, a hospital bed, a stair lift, etc. If they ever need to talk about any of it, they can talk to me or Daddy or anyone they know and love. Or if they want to talk to someone else who can help them, I can find them someone.

Grant and Gavin sometimes tell their friends. I make sure I tell their friends' parents if they play with them on a regular basis. Their friends think it sounds kind of neat. They will say things like, "Then I will come down lots more and play with you so you won't be sad." At times like that, I am grateful that they cannot currently comprehend the magnitude of this loss in their lives.

Sometimes they cry. I have found Grant hiding under a blanket sobbing, but trying not to, that he doesn't want daddy to die. I just pick him up and hold him and cry with him telling him, I know. It is okay to be sad. It is okay to be mad. I have found Gavin in similar situations. I just put him on my lap, stroke his hair, and tell him, I know. It is okay to be sad. I am sad, too. So is Daddy. It isn't anyone's fault. Gavin said, "It's the stupid devil's." He knows he is allowed to say the word stupid in connection with the devil, so he will say it again and again. I feel like screaming a few 4- letter words here and there, so I figure he needs an outlet.

Grant is confused about illness in this house. When Daddy is sick, he gets lots of attention and the mood changes. The kids notice this, especially Grant, being home after his half day of school with Daddy and Mommy every afternoon. He will suddenly get headaches when Daddy isn't feeling well and need to be held or need to watch a movie. Sometimes he needs ice cream. Sometimes he gets those things, sometimes he doesn't. I know it is confusing for him. I tell him Daddy doesn't want to be sick. I sure don't want any of them sick. I would rather play a game with him if he feels good. Sometimes it works. Sometimes it doesn't.

Otherwise, they are going on pretty normally. They are playing with friends, watching TV, doing homework, eating, wrestling, whining, fighting, etc. I am just trying to help them stay and feel normal in any areas I can.

ME
Honestly, I am doing well with a few exceptions. I don't really know how well I am sleeping. I feel pretty tired a lot of the day, so I think I am tossing and turning. Don't offer me aide on which sleep aid to take. I won't take it. They make me a walking zombie and I need to be able to take care of any issues that may arise in the course of a night. We have relatives coming into town this weekend, so I may take a sleep aid or just sleep in one day this weekend. My neck and my shoulders feel as though they are trying to hold up a 50 pound sack of flour or something. They hurt all the time. I had a massage on Friday, but it did little good to help ease the tension in my neck and shoulders. Any tips?

I have an unbelievable outpouring of support. Tomorrow, I plan on writing to tell any of you that are local or long-distance what we need, what you can do and what we don't need and what we would rather you NOT do. Not so sound ungrateful, but I know many want to help. There is only so much help one family can accept, though

I have contacted hospice. They admitted us this weekend which gives me much relief that if Brian were to take a sudden turn for the worse, I know who to call and what to do. The hospice contact was difficult for Brian. Since he feels good physically, he feels like people are giving up on him. I said, I have to have these resources here more as a "just in case." I didn't know what valuable resources hospice provides from a social aspect - counseling, advice, materials for the children. I am so glad I contacted them and can't wait to get more help with the children.

I am on a roller coaster. I don't think I am in denial. I am more in survival mode. One minute I am so grateful for the many blessings God has granted us with our lives and our children, and the next minute I break down and cry uncontrollably. One minute, Brian and I laugh and joke, the next minute I lay my head in his lap and sob about the unfairness. One minute I look at him and breathe in every square inch of Brian, the next minute I can't stop the tears from coming wondering when the last time he strokes me hair may be. I think these are normal when someone is dealing with a terminal loved one???

Neither Brian nor I are happy with how we are spending our time. I have been spending a lot of time on the computer reading emails and comments and writing blog posts. He has been watching a lot of TV and the boys are kind of just doing their thing. We want to do more together, to make these moments more impactful. We are going to do more to turn off the TV at night and play more board games and read more books together. We have to give the kids their normalcy, too, so it is a difficult things to balance. We don't want to shove memories down their throats. We want them to be memories that happen naturally. Yet, we know our time is likely limited so some things will be more forced.

That about sums it up. All in all, we are all gradually coming together. We are growing. We are grieving. We are accepting. We are praying. We are learning. We are bonding. We are loving. We are living.

Mostly though we....
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When a fast appears to be unsuccessful...

Over the course of the last 3 weeks, our church has been participating in a fast. Many of the girls from my church group (for which we are still trying to come up with a clever name) and family, fasted on our behalf.

Here is what I fasted for: Brian's healing and our future provision.

Admittedly, I am not a good faster. One reason being, sometimes fasting makes me crabby. I made up my own fast from a few things from which I truly sacrificed for the first two weeks, but didn't stick to it the last week - AT ALL. Being the primary caregiver and knowing that I am the sole driver, etc. in my family, I felt it very important to take care of myself. Let's face it, though, that is a feeble excuse. I can justify myself all I want, but we all know that God would sustain me if I was doing something for His glory - to bring myself closer to Him.

Do I blame what has transpired over the last week to my failed fast? N-O! Not at all.

Do I think fasts are worthless for those that did fast on our behalf after the events that have transpired over the last week? N-O! Not at all.

I want my friends and family that were successful in their fasts on our behalf to know that I truly believe your fast was effective. While, we are not seeing a physical healing in Brian right now, we are seeing an emotional and spiritual culmination that transcends logic. Here is what I mean:

The first week of the fast, we received SEVERAL DIRECT ANSWERED PRAYERS. Please go back and read those to feel encouraged about our cause.

Right now, Brian feels better today than he has in over a week. While this makes it difficult to accept what is occurring inside his brain, it makes our time together extraordinary. We are capable of discussing things. He is remembering and comprehending just about everything.

Brian is not afraid of death. I have asked him many times, so we can pray about this and work through it. When I ask him, the answer without hesitation or thinking, is, "No." Just NO! I told him, "Then you win, Baby, YOU WIN."

Brian and I have discussed that right now he can be an amazing testimony to his boys about death. In the end, we are all departing this earth some day. Brian has attacked every obstacle that has ever come his way with dignity and courage. Death is no exception. What we can teach our boys in how we handle this is something that I believe will have a greater impact on them than just about anything they will ever experience.

The peace we are experiencing is overwhelming, serene, and illogical. Healing is not always physical.

KEEP BELIEVING

When you put your friends off long enough....

Lately, Brian has begun to have a few more issues. He is having some memory lapses. He doesn't remember things that have happened in the last couple of days. Then the next day he remembers them and doesn't remember that he didn't remember them and then it all happens again. He has little to no appetite and has been vomiting some more. He is incredibly sleepy. He has almost no energy. He has been having an issue with his hearing in the left ear (side of the tumor) where he will suddenly hear a strange noise, all other noises sound tunnel-like and then he doesn't remember that it happened a few moments later. I am assuming this is seizure-ish activity, but I can't be sure. Are these things related to chemo or are they as a result of cancer progression? We have no idea. He goes back in for the next dose of Avastin on Monday. He has an MRI on Feb 2 with results given to us by the surgeon on Feb 3. He is scheduled for chemo again on Feb 9. We will see how it all goes in the next few weeks.

So things are getting somewhat harder around here. Brian is kind of out of it more. He is walking with a cane, so he lost his only free hand making it difficult to do much of anything around the house, not that he was able to do much anyway. We have had extreme cold and more and more snow, so getting around town is complicated, too.

Also, we are having issues with radiology insurance claims from over a year ago. I have been on the phone a lot trying to handle that. I am now trying to appeal to the radiology practice itself to reduce the claims to a reasonable and customary amount so we can just pay them out of pocket since they have been denied by insurance despite our constant appeals. This one is very frustrating to us. We did not order the tests. They were ordered by specialists in the field. Brian just endured the tests. To have them denied for a reason of "unproven" is beyond frustrating. We would have assumed that if they were ordered by professionals who treat brain tumors for a living they would be "proven." Regardless, I am tired of fighting. I give up. I just pray we can get the amount reduced.

Grant was sick yesterday with a stomach bug. He is fine today.

Many of my friends have asked what they can do. Nothing yet. I really have meant it. Just support and love and company. I DID finally ask a friend to come over and help me clean my house tomorrow. So, today, I have to pick up and organize so they can help me clean, dust, vacuum, empty bedroom garbage, etc. I do need that help. But, mostly, I don't even know what it is that I could use help with.

So, today, at my church Mom's group, my table surprised me with some things. First, one girl came in and said she had dinner for me.

bbq pulled pork on buns, healthy chips and Caribbean Cole Slaw.

Then another girl came in and said she had something for me in her car.

Chicken and Rice with Hawaiian Rolls.

Then another girl asked me when I was leaving because she had a frozen dinner for me in her car.

Lasagna with salad and French Bread

Then one more girl asked me when I was leaving because she had just a "few" breakfast items for me in her car to help with the mornings.

blueberries, strawberries, cantaloupe, bagels, 30 small boxes of cereal, 24 cookies, 15 double packages of muffins, 12 breakfast biscuit sandwiches, 10 coffee cakes, 6 English muffins, 6 bagels, 1 bottle of wine, and a partridge in a pear tree (only not really.)

My favorite part: the bottle of wine since the theme of these "few" items is to help with the mornings. Now, THAT is a good friend!

Aren't these girls beautiful? Inside and Out?

KEEP BELIEVING

snow angels

I'm not talking about this kind...

I'm talking about this kind.....

The kind that take the shape and form of neighbors who have developed a plan for removing snow from our driveway for us. The kind that take off their wings, grab their scrapers and shovels and remove nearly an inch of snow covered heavy ice without being asked.

The kind that make an icy day that could have been disasterous...

...tolerable, by easing the load so I can attend to important tasks like banging ice off this tree.

...and enjoying the beauty in the midst of the burden.

KEEP BELIEVING

our interview

Our interview about finding peace in the midst of life's storms was played at church this past weekend.



Here is a link to the audio file. Go to message player and click on the audio file for Finding Peace on Dec. 14. I could not figure out how to embed it directly in here because I am stupid about such things, so to listen to this will take you a couple of steps. I am sorry.



This link is to the entire message which I would naturally encourage anyone to listen to because I think it is powerful, but our interview portion starts with approximately 10:30 remaining (about 32 minutes into it) and plays until about 4:00 minutes remaining. The entire message is a little over 40 minutes.



You can hear some of the issues Brian has with his speech here. Prepositions are one of his most challenging issues - he uses the wrong one often. He knows what he wants to say, but the words just do not come out all the way he intends - Expressive Aphasia.



There were so many things I wished we would have said after the interview was finished, but I think the guy that did the editing of the interview did a fantastic job making it coherent and meaningful. One day I will post the letter I wrote when I got home from the interview that afternoon of all the things I wished I would have said. For now, though, I want you to listen to the interview in its purity without knowing the "coulda, shoulda, woulda's" of it.



KEEP BELIEVING

something unfamiliar

Uncharted waters.

Foreign land.

Unfamiliar territory.

The other day, I had THIS at my house for a few hours:

Do you know what that is???

IT's a girl!!!

Pink, bow-wearing, blows her own nose IN A TISSUE, long haired GIRL!!

This is a friend of mine's daughter. My friend, M, has a 3-1/2 year old girl and 2 year old twin boys and spent the last few years in Mexico. Turns out, in Mexico, there really isn't snow, so M's cold weather tolerance is NON-EXISTENT. So while her kids are intrigued by the snow, M has been cleverly dodging their requests for winter wonderland playdates. Having spent a couple winters in Canada, I gladly offered to dress her kids up like Eskimos and let them experience WINTER (even though it is technically still Fall as Gavin keeps reminding me).

Turns out, this beautiful, steal my heart with her adorable smile and hair band with matching shoes FEMALE has her mother's tolerance for cold weather.

Still, it was fun.

KEEP BELIEVING

Next Steps

Today we went into Brian's office together to clean it out of personal items. He is officially on long term disability now and rightfully so. As with every step we have recently taken, it was much harder on me than on Brian.

Brian said some things to a few co-workers and gathered one box of personal belongings. Belongings that will probably sit in a box untouched for an indefinite amount of time. It was hard to decide what to say to each co-worker. Some of these co-workers are long time friends. Friends that are agonizing while witnessing their friend become more ill.

Brian and his Dad, who worked for Cat for over 35 years.

I took my first steps with reaching out to Caterpillar HR. They are compiling financial and benefit information on my behalf - life insurance, cobra amounts, pension numbers, etc. The financial impact of Brian's health on me and boys is my biggest concern. This concern is compounded right now with the economic crisis in our country. We have lost over 40% of our savings. We are also under-life-insured for a family of 4 with a stay at home Mom. My degree is in Engineering Management, but I have always worked in areas of accounting. Accounting has changed drastically due to the collapse of Enron, World Com, etc. with most companies demanding an accounting degree and CPA or CMA after one's name. Re-entering the workforce with a salary to support my boys in a job that doesn't require 10-12 hour days as a single mom, with the meager savings we have remaining and the 3X Brian's salary in life insurance (he was diagnosed 1 month after we were married making adding life insurance impossible) is the ONE thing (or many things, I guess) that grips me with fear.



I would be remiss not to mention at this point in time what an amazing employer Brian has had the privilege of serving. Caterpillar has treated Brian with the utmost dignity and respect. While dignity and respect are well-deserved by Brian, many employers would have shut the door on Brian at the first signs of his illness. Eleven and a half years ago, when Brian was first diagnosed, Brian had JUST been transferred to Denver with Caterpillar. I wrote of it here. In those three years, our medical benefits were outstanding. We had to wrestle with claims a few times, but in the end, everything was always covered. All surgeries, all second opinions, all treatments, everything. Caterpillar is self-insured. Throughout the years, as medical costs sky-rocket (thank you malpractice suits), Cat has had to cut back on benefit coverage - raising premiums, adding deductibles, increasing co-pays and out of pocket expenses. Each time, it has been in essence a pay cut for us due to Brian's serious illness. However, each time, the benefits are still better than probably 75% of Americans. We know we are blessed in that regard.



After 4 years of remission, Cat took a chance on Brian in 2005 when they offered him a promotion and a new job in Canada. We snatched up the offer and felt very confident that we were on our way to the next phase of life with cancer safely behind us. While that was not to be the case, I do believe anyone that worked with Brian the 2 years he was in Edmonton, Canada, would say he was a true asset to the organization and it was entirely worth the time and effort to have him there. He loved his job, loved the people, loved his products, and loved his company.



When Brian needed surgery in April 2007 and we were living in Canada, Cat was beyond accommodating assisting with an expedient move back to the States, transportation to and from the hospital in Brian's fragile condition, etc. Since then, they have always found a place for Brian in the organization. They have always tried to best utilize his skill set within his limitations while ensuring he stayed sharp and challenged without undue stress.


In short, they have been amazing.


And now, as we are unsure about the future and unsure about the timing of what may come next, they are kicking into high gear to do the leg work for me. They are once again, going above and beyond to make this as easy on us as possible.



Say what you will about big yellow, in my book, Caterpillar is one hell of a top notch company. I am honored to have worked there for a few years and I know Brian is proud to display the Caterpillar name across half his wardrobe.



Caterpillar is just one of the many blessings we have been counting lately. Today, as Brian packed his box, I felt compelled to acknowledge that.



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It is just life.

So lately, my kids aren't doing much to give me any blog fodder. Life is relatively boring and routine with soccer, church and housework and I consider that a good thing.

You probably don't want to hear about everyday life with us so I don't write about it.

I feel like you don't care that I re-acquainted myself with a friend recently and found out we have much more in common and a deeper friendship than I had originally thought.

I feel like you don't need to be bothered with pictures from our trip to a local orchard.

I feel like you couldn't possibly care less that the orchard is now surrounded by a windmill farm taking away from its simplistic roots, but somehow giving it a new mystique.





I feel like you don't at all find it interesting that this is the face of my friend after warning her husband not to throw the contents of the garbage can into the bonfire at their home in the country under construction only to be ignored and for the rest of the party to find out that a small compressed gas cylinder used to power a nail gun will first sizzle and scream like a Roman Candle before it explodes like a shotgun shell sending embers flying everywhere.

That's the trashcan in the background JUST before he was cautioned NOT to dump it.

And WHY would you be interested in knowing that on beautiful Fall Saturdays my boys set up little parties in the bed of Daddy's Pick-up for hang-outs with their friends.

And what could be more boring that seeing Gavin wears his chocolate pudding on his face...


And Grant wears his on his sleeve?


Why would you be interested to know all that? It is just life.



KEEP BELIEVING