Illinois

We just got back today from a trip to Illinois to spend Christmas with my in-laws. I also grew up in Illinois (about 40 minutes away from Luke but we met in Virginia). My parents now live in South Carolina and so it is nice for me that I still get to go "back home". We planned our yearly summer trip to Illinois for July 2005 after having been there a year earlier. Nathan relapsed in June 2005 and so we had to cancel our trip while he underwent intensive therapy. Fast-forward to July 2006 and another planned trip. Nathan once again relapses in June and we are unable to travel. This past June we tried to go to Illinois one last time but Nathan was too unstable to go. So that is how it happened that it had been over three years since we got to go to Illinois. It was very good to be back.

We ate so much food that I don't think we have been hungry since we left on our trip. There are two foods I can't get here and so I twice had to have Monical's pizza and Steak and Shake. Add in Luke's mother's homemade fried chicken, chicken and noodles, fabulous pies, peanut brittle and much, much more and it seems like all we did was eat! It was great! We will now commence with LIGHT eating though.

Luke's sister and her boyfriend were also there and it made for a wonderful family Christmas. Julia and Lauren had so much fun playing and being read to. Santa was good (though he failed to bring Julia the $250 4 foot high animatronic pony she wanted).

We drove out (about 15 hours each way) and it was really good. Lauren had never been on a long car trip so we didn't know what to expect. We did it in 2 days each time. We spent last night with good friends in Kansas City and that was a bonus!

We missed Nathan like crazy and at the same time managed to have a decent Christmas. How can we not when we still have two beautiful daughters. I imagine Nathan had a fantastic Christmas in Heaven and I hope he was able to "pop in" and see us in Illinois.

I am being lazy and so you will see accompanying pictures on New Years Day when I publish the December photos.

Merry Christmas

I hope all of you have a blessed and merry Christmas.

Julia dancing

WARNING - this is one of those posts of interest strictly to family and good friends as it is the 5 year old ballet/tap recital footage.

She had a lot of fun. Professional pictures will come later and I will post those when I get them. It was way to dark for still pictures.

Public Speaking

I am really terrible at public speaking. I get shaky and speak haltingly. I can't stand listening to myself do it and I am sure others don't want to hear me either. So - since college I have generally avoided it at all costs.

Tonight, I am going to speak to a group of people of unknown size (should be less than 100 for sure). I can't remember if I volunteered or was asked, but there was never a question that I would do it.

Now the event is upon me - yikes! I just practiced my speech a few times and it isn't pretty. I do hope that it will have impact, which is why I am doing it.

There is a fundraiser tonight for Flight of Hope.

This is the organization who twice flew us to NY when Nathan needed transportation there. You may recall that last year at this time, Nathan was in the hospital with no immune system and weak and feverish. We knew he was going to die and we desperately wanted to get him home for Christmas. We had been in NYC for three months after packing for a 10 day trip. Nathan had been in the hospital for 6 weeks with no immune system and we had given him his last bag of stem cells and were waiting for him counts to come up. The doctors were adamant that Nathan stay in the hospital. We knew the only way to get him home was to get him on a private plane because he couldn't possibly fly on a commercial airline. Fortunately for us, Flight of Hope was able to schedule a flight for December 19. We had hoped his counts would have began coming up by then but they didn't. Against the wishes of his doctors (I think we had to sign a document to that fact) Luke checked him out of the hospital and brought him to the airport and we flew him home.

Without Flight of Hope, Nathan would have been in NY for his last Christmas and we all might not even have been together.

So - while rough and probably teary - I hope I can convey what a worthwhile charity this organization is.

Living Life

Sometimes it just really hits me how odd it is that life just goes on after someone dies. The details of everyday life continue and have to be dealt with. A week or two just doesn't seem like enough time to actively mourn someone. Nathan died and we had his service 5 days later. People came in to town and we all mourned Nathan. Nine days later my parents left, Julia started kindergarten and Luke went back to work. Regular life was thrust upon us and this life with work and small children just doesn't leave room to stop and mourn. So - we got right back into things. School, church, work, playgroups. Sometimes it just doesn't feel right. It feels like I am faking my way through everything. I also feel like when people see me, they don't see any of what Nathan's death has done to me on the inside and I just look like any other suburban stay-at-home mom with all the normal "problems". In some ways it seems dishonest. Then, when I think about it I realize there just aren't any other choices. My girls need a "normal" routine. I can't just go lay in bed - I have to take care of them. Luke has to go to work and make money. So life trudges on. Something just isn't right though and

Lauren update

I took Lauren to the cardiologist today. It was a little nerve-wracking because after the cardiologist listened to her for a while he told me he wanted to do an echocardiogram. So - they did that (and Lauren was SO good - not a peep out of her) and the results are that she has a very loud "functional murmur". It is just the way she is built I guess. He is not concerned but wants to see her in three years as a follow up. That is a big relief.

After the cardiologist - we went over to our local IRS office. I got a letter yesterday telling me that I MUST have put in the wrong social security number for Nathan because someone else used it too. The letter told me to check the number and refile. It didn't tell me what to do if the number was right! So - I gathered up his social security card and death certificate and headed over. I was told that they will give it six weeks and if the other person hasn't filed an audit will take place and at that point I can give them my paperwork. It is really frustrating to think I have to prove he was my son and I had the right to file with him as my dependent. Perhaps someone else just made a typo and will correct their return and I will not hear anything else about this.

I am off soon to take Julia to her grief group and entertain Lauren. After that I have a 3 hour choir rehearsal. I hope I can make it until 10:00! I usually attend the parent group that meets while the kids are having their time. I have kind of been hating it lately because I just feel wrung out and crappy when it is over. It is nice to have some excuses not to do it tonight. I was certainly not going to have a grief session and then go sing for three hours and now it turns out that Lauren will be with me anyway.

November Pictures

Little Lauren

I took Lauren to the doctor today for her two year old check-up. She is the weight of the average TEN month old girl! 21 pounds. Her height is around 50th percentile. Her weight is listed as 1% because I guess 0% is not an option. Her doctor is not concerned because her growth curve looks good - it is just off the charts. She was 19 pounds at 18 months so she has gained 2 pounds in 6 months and is about and inch and a half taller (she is 33.5 inches). Her head is very small - that is in line with both Nathan and Julia as babies and toddlers. There is no concern about her head - she is speaking in complete sentences and has amazing comprehension. It's funny - because when you look at her body it seems normal in proportion but that is normal for an older child. She has none of the chub that toddlers are supposed to have.

We talked about how pale she is and that it is probably just genetics but we did a quick toe poke to check her hemoglobin. It was just fine at 12.3.

Finally - a listen to the chest brought new news. Lauren has a heart murmur. Most likely nothing to be concerned about but "because she is a Gentry" the doctor (her words) wants a pediatric cardiologist to listen to it. We already have a pediatric cardiologist thanks to Nathan's chemo and Julia's Kawasaki's disease. So - Lauren gets to join the fray. Why not!

I am trying not to worry about it. I have known plenty of kids with harmless murmurs. Even if it is a little more than that - I can handle anything short of a deadly disease. There is no exemption for the other children once you lose one child. There ought to be.

Ahhhhh

In my previous post I mentioned we had to have birthday cake for breakfast on Friday. The reason for that is we had to go to Denver right after school so we could spend the night and get on a plane early Saturday morning.

We are in Hilton Head Island, SC, spending Thanksgiving at my parent's house.

I hope all of you have a Hapy Thanksgiving as well!

Happy (belated) Second Birthday Lauren

I am remiss in posting this. I have a good reason, which is the same reason we had birthday cake for breakfast. I will blog about that reason in a few days with some pictures.

At rest

We have now interred Nathan's remains at the columbarium.

Luke wanted to go be there when they put them in and so I decided to bring Lauren and go as well. I didn't really want to but I also felt compelled to go.

It it a gorgeous fall day with temperatures in the low 70's. The ground at the cemetary was covered with leaves and Lauren had fun crunching around in them.

We followed the cemetery manager (Luke tells me that is his title) to the columbarium and they had a little pedestal and a fake green/grass carpet thingy on the cement in front of Nathan's niche. That kind of made me cringe but I guess I should have expected that with it being a cemetery and all. I have to remind myself that most people like that kind of stuff - it was just that we were kind of trying to avoid it ourselves.

The drawer was open and the door was propped up on an easel. We looked at it for a moment and then the manager handed Luke the container and he put it in the drawer. We asked him to have it closed so we could take pictures of it and so he called someone over who closed it up and he went on his way.

We took some pictures and wandered over to the nearby stone chapel. Lauren picked up leaves.

After that, we went back home. We will talk to Julia, explain all the stuff (cremation etc) and take her over there sometime soon.

Superkids

This was Nathan's Halloween costume when he was 16 months old. When Julia was 21 months old, we were in Denver following Nathan's transplant. We were given the green light to return home on Halloween. After the rush to pack and come home I could not find the costume I had purchased for Julia. I rummaged in the crawl space and came back with Nathan's superman
costume and she wore it. As it turned out - it totally fit her personality. I have been waiting to put Lauren in it and the opportunity arose today. It is enormous on her - she is very petite!

Nathan

JuliaLauren

Nathan

Julia

Lauren

Blows

I guess I have been told grief is like this. You are doing OK and then something or things knock you down.

I am still frustrated with my voice - did I mention I had laryngitis 10 days ago? I still cannot sing. I couldn't even talk at first so there is progress but my voice is not better yet. Singing is one of few joys I get out of life right now.

Last night I walked into Hospice to take Julia to her grief group and to go to the parent group. There is a woman on the couch and I recognize her. It takes about 3 minutes and it comes to be who she is. She is the last nurse to come to try to help Nathan the morning he died. He had been in incredible pain all night. They finally sent her with some medicine for him. I remember how hard it was for her and she mentioned that she doesn't usually go see kids because it is too hard for her with her own at home. She was visibly upset - and has every right to be. There in front of her was a seven year old child in pain and dying. She offered to stay until more of the ordered medicine arrived but I told her she could go - and she did, with much relief. That medicine arrived about a half an hour after Nathan died.

So - I went up to her last night and told her who I was. Tears started flowing immediately, automatically for both of us. She was there at the worst moment of my life and all those memories came back. She was there with her own second-grader. He daughter had just lost a good friend and was having trouble dealing with it. She was apologetic about being there since it was obviously hard for me. I told her it was probably better running into her there, in such a place where tears are normal, than in the grocery store or something. She asked me, with hope, if she was able to take care of Nathan's pain that morning. I had to tell her that it helped for a few minutes but did not last.

We had our group and it was fine that she was there. The whole thing just took a lot out of me. I came home pretty much useless and Luke took care of the girls and I went out for some dinner. I am still kind of shaken up about it.

Today I read about another child with Neuroblastoma. She is in the ICU after having a reaction to her treatment. This treatment is the trial that Nathan was the first child to do last fall in NYC. This is the trail we were told could "CURE" Nathan. I have followed some of the children who did this trial after Nathan did. At least two others are also dead. NONE had any overall improvement and several progressed while on the trial. A few were stable on the trial and progressed afterwards. It has been a big fat failure while having some serious side effects. High blood pressure - crazy bleeding - obliteration of bone marrow - respiritory difficulties during the infusion - I am sure there are more. Not to mention spending all that time in NYC away from home for 99% of the kids. This sick child is on a respirator. Whatever happened to her happened during the infusion. During Nathan's second infusion his sats went in to the 60's for a couple of minutes. It was scary. There was much medical action going on even though he was being infused with a radioactive isotope and was emitting high levels of radiation. The study doc was actually the one that went ahead on got right there next to Nathan to try to help him and took the radiation. In my mind - I see this child in this situation, but instead of the problem being resolved - they had to intubate her. That could have been Nathan - almost was, probably.

It makes me uneasy. My first reaction is to wonder why this trial is going forward with such dismal results horrible side effects. Then I remember the situation that we were in. We were grateful that there was a trial for Nathan. He didn't qualify for any other trial, really. The trial represents hope, even though it is now known to be very slim hope. When we did it, there was great hope. Either way - I guess I DO want the doctors to be able to offer this trial as an alternative to going home to die. The problem is, I was that for the PARENTS. Would we have put Nathan in that trial if he was just getting to it now? Armed with the knowledge of potential side effects and chances of having any sort of reduction in disease burden being slim? It is hard to say. I am sure this doctor is still serving up a very optimistic view of this study. I am sure the truths we know about it are being sugar-coated. I just don't feel that any more kids should be put through this study. I guess it is just as well that it isn't up to me.

So - all of that, plus the insurance crap leavees me not in the best state today.

$#%^@ Health Insurance

I don't think I have anything eloquent to say. I'll try though. I'm still battling with our health insurance over Nathan's medical bills. He hit his out-of-pocket maximum on January 23, 2007. They never stopped billing us for his coinsurance anyway. I spent 45 minutes on the phone arguing with the "specialist" about what an individual maximum meant versus a family maximum. She told me , once he hit the individual maximum then he just started accruing on the family maximum until that was hit. Huh? What is the purpose of an individual maximum then? 5 minutes before I needed to leave the house to pick up Julia from school she FINALLY got it. However, it was too late to make sure she was going to do anything helpful about it and I had to get off the phone. This is coupled with the fact that on October 2 I called and they told me they would issue an out of pocket audit. They have now told me that for some reason, even though I called on October 2, they did not start the process until October 29. It will be 30 business days. Gee - Thanks.

So - we may be left with the dilemma - pay bills we don't owe or be sent to collection and have a black mark on our credit report.

What a great choice. I just love the way insurance companies leave the patient with zero recourse when they can't add two numbers together and their system even shows negative numbers as a balance due by us.

Oh - and the emotional cost to me is almost as bad. I just don't have the extra emotional energy to battle with stupid people.

Forgotten Photo

I was rummaging through some boxes in the crawl space today and I found our engagement photo. I had completely forgotten we had that done. I now recall we didn't really like it that much. Now that we are ten years older - I think we look great!

October pictures

Of Cemeteries on Halloween

It's Halloween - where better to spend time than in a cemetery.

That is where Luke and I went this morning. If you recall my post, My Closet, we had a decision to make about Nathan's remains. A few weeks ago it occurred to me that perhaps we could inter Nathan's ashes. As time has been going by, the thought of having an urn somewhere in our house has become less and less appealing to us. We also felt that should we ever move from here, we might not want to leave his remains behind. So - we needed a solution.

The week before last, when I had a child-free morning, I drove down to the cemetery to see what the options were. It is a huge cemetery and I got lost and didn't find all the places I was looking for. I did drive by a row of children's graves. There were "Happy Birthday" balloons and stuffed animals. Seeing those helped to cement the fact that we did not want that. I completely understand why people do want to have graves for their children and spend time there and decorate. However, that thought is very unappealing to Luke and I. Nathan is not there and will never be there so we don't feel like we will be "visiting him" there. We want a "resting place" and a dignified place for his remains. Can I just say, thank goodness Luke and I both feel the exact same way about this???? Can you imagine if we had different feelings about what to do with his remains.

While wandering, I found what we wanted; a columbarium. This particular one is located near a very old stone chapel and is surrounded by large trees. I apologize that, though I brought cameras both times, I still have failed to take a picture of it. It has four sides and is 4 drawers across and 7 down. It has a reddish marble front to be engraved with the name.

So - Luke and I went down there this morning and purchased a niche in the columbarium. We also gave them Nathan's remains for safekeeping in their vault until the engraving is done and it is ready for interment. The person (of whose occupational title I couldn't hazard a guess) tried to encourage us to hold a ceremony of sorts when they inter the remains. For many reasons, we are probably not going to do that. We will take the girls over when it is done and show it to them.

I think that I feel a sense of relief that this is done. My friend offered to keep Lauren the whole morning, so after Luke and I were done at the cemetery we had some time together. We bought Luke an early Christmas present. It was a typical retail therapy kind of thing so it made us both feel good and I know he is going to enjoy it immensely. I'll leave it to him to blog about it at some point. We got a nice lunch afterwards and then I hurried off to attend Julia's school party. It was a little unsettling attending a kindergarten party after what I had been doing this morning - but that is the way life is.

Tonight, in typical Colorado fashion, it is expected to rain, snow or ice during prime trick or treating hours. It should be fun either way. The girls had a party on Saturday and the weather was beautiful then and I took some nice pictures already without all the bundling up.

My desk

The living room has become my office in the last few years. Baskets of mail and bills lying around. My computer on the coffee table. My stationary and power cords in baskets and bins. Important mail lingered with junk mail.

I got the idea a few weeks ago that a very small desk would be a good thing to help me organize.

I walked into the local oak store the other day and there was the exact desk I needed! At $240 (much of it solid oak) I couldn't pass it up.

So - here it is:



And the BEST part for a slob like me:




I now have my computer and all my chargers nicely put away. Medical bills get their own cubby. I went through baskets of mail and reclaimed things like the title to our van. I feel calmer just knowing that any important stuff now has it's own cubby.

Middle of the Night

Luke posted about the great radio show taping (that is a link but links do not show up very well) we went to on Friday night.

I loved Loudon Wainwright III's new song "Middle of the Night" Luke put it on his post, but I will repost with lyrics. As I am in the "middle of the night" currently, this song resonated with me.

Into this pitch darkness we're hurled
Where there's not a glimmer of light
It's not the end of the world
It's just middle of the night

And the blackest of flags is unfurled
In all this absence of light
It's not the end of the world, good people
Merely the middle of the night

The middle of the night
That's what this is
If death is the real test
This is just a quiz

When grey creeps through your window
It will be daylight
The end of this darkness
Is almost in sight

To a ball of fear you are curled
You're holding on with all of your might
It's not the end of the world, little sister
It's just the middle of the night

In the maelstrom of your mind you are swirled
Almost down the drain but not quite
It's not the end of the world, my brother
Rather the middle of the night

The middle of the night
When you fear everything
but the birds will awake soon
and you will hear them sing

You doubted you'd make it
not sure you'd survive
Now your dead tired
but you're still alive

Around fate's fickle finger we're twirled
Small wonder we're all so uptight
It's no the end of the world, good people
Merely the middle of the night

It's not the end of the world as we know it
it's just the middle of the night

Colorado weather

Crushed

Yesterday when I went out to the van with Lauren I looked down and I saw one of Julia's china doll babies obliterated on the ground. It must have fallen out of the van door and then gotten run over. I could see pieces of the little babies face. It was really macabre and upsetting. I would buy her the little dolls at the gift shop at the hospital when Nathan was inpatient.

Luckily, she didn't see it because she would have been very upset. I guess I now need to go to the hospital to see what replacements I can find before I tell he it "broke"

Gone fishing....

Not exactly fishing - but we had a long weekend in Seattle with friends.

It was a wonderful trip. The kids played - the adults hung out.


On Saturday we had two babysitters to watch 8 kids and we went and did a wine tasting and then dinner. It was the most fun we have had in a very long time.

The night wound down with a game of poker using amusingly large children's playing cards and goldfish as currency.


We jumped back into life today. I took three toddlers (23 months, 30 months, 21 months) to the grocery store and we all survived! Julia has dance class after school today.

Update (tomorrow)

So - I did go to the funeral. The only hard part was walking past the parlor when I was making my way to the choir room. The parlor is where the family gathers before the service and I hope to not go in there for a very long time. Just the thought of the family in there waiting for the service to begin gives me flashbacks.

I was so glad that I went. I found the service to be extremely comforting and to be able to sing "How Lovely is Thy Dwelling Place" at a time when it is utterly meaningful was a blessing.

Unfortunately, I did not have time to go through the receiving line. I don't know her plans, but I hope my fellow alto will be back singing with us sometime soon.

This man was a coach and an educator and had a positive influence on so many people. I am glad to have learned more about him.

Tomorrow

So - I may be going to a funeral tomorrow. In my church - eight (no - nine) weeks later.

One of my fellow choir members lost her husband to cancer. She hasn't been able to sing for a while but when she did, I always looked forward to sitting next to her. When I was pregnant she talked to me of singing in the choir when she was pregnant, too. That baby is in his forties now.

I had been considering going to the funeral but not sure if I could do it. Then she asked the choir to sing "How Lovely is Thy Dwelling Place". I think I can do that. I really want to do that for her. I will be sitting in the choir loft, which is my usual place to be, not like at Nathan's funeral at which we sat in the front row. I will NEVER sit in the front row again if I don't have to.

Babysitting plans have been made, but Julia has come down with pink-eye. She can be at home with Luke without causing him interruption, so now Lauren is still set to go.

I feel like the decision will be made for me tomorrow. There is a good chance sickness will keep me home. Either Lauren or I might have pink-eye by the middle of the day as far as I know.

I checked with the choir director tonight at rehearsal to make sure that "How Great Thou Art" was not going to be sung as a solo as it was at Nathan's funeral. I am certain I would NOT make it through that. Even so, I am a little worried that I will be hit with flashbacks and emotion.

So - I will wait to see what sickies are in store tomorrow...

Oh - and there is another issue; what to wear? When I bought the dress I wore to Nathan's funeral I was determined I would wear it again for other things. Well, here I am again, needing a dress appropriate for a funeral and it is going to be quite warm tomorrow so it would make sense to wear that dress again. I haven't worn it since Nathan's service - so if I wear it tomorrow it just might become my "funeral dress" and that will be it.

Don't know.

September pictures

Satisfaction?

I have been trying to correct an error in one of our newspaper subscriptions. We bought an outrageously cheap year of a newspaper from a door-to-door salesperson in May. Since we have lived at our house we have gotten the same deal two other times. The deal expires, they offer us the regular rate, we decline and then a year later or so, someone shows up to sell it to us again.

This time, they made an error when they turned it and and we received a different deal than we signed up for, I called up and she said she switched it to daily.

I recently received a bill and so I called and they claimed I only had paid for 12 weeks. I couldn't find my receipt - I complained about being misled but she said there was nothing she could do. So - I did nothing and got called by the billing people today. I explained the problem and he admitted that he has seen that deal before so I called the newspaper up and spent a good 45 minutes or more on the phone with people and finally got a supervisor who actually queued up the conversation I had back when the wrong subscription was put through. She said she would correct it to daily (thought said nothing about a year) and he said he would honor it but he wasn't happy about it. He actually admitted they do give the deal I was sold even though two other CSR's denied such a thing existed.

So - I prevailed, but at what cost? It was very stressful. I had to get annoyed with them, I had to start going down other route like asking to get the contact number of the company that hires the contractors who sell these things, etc. etc. I hate that crap and in my current state of bereavement, I can hardly handle it.

I should have just called and canceled the dang thing. Perhaps I will feel better tomorrow morning when I go get the paper.

Insurance

Trying to fix messed up insurance claims is something I have always hated - doing it for your dead son's medical bill - 1000 times worse.

Without going into too much dteail - the pathologist split from the hospital while we were in NY last year. So every single cbc he had between coming back and going on hospice is being billed to us from the pathologist office because the insurance company isn't paying them - they are paying the doctor's office and the lab, but not eh pathologist. Argggghh - not to mention this lovely line:

maximum yearly out of pocket - $1000
ytd out of pocket - $1691.45
YTD deductable remaining - $-691.45

Uh..duh! I am not paying more than $1000. Shouldn't there be something in the code that prevents the negative amount or at least flags it?

Now - I have to go off to be around people and smile and make nice with people I may not know at dinner. So thrilled. I don't even want to be around ANY people and I certainly don't want to smile at them and be polite.

Ten years ago today

Rocking chair

I recently took this picture of Lauren in the rocking chair in her room. I love the way she is looking at the camera and the way the light is coming into the room.



It made me have to look up this picture of Julia in the same rocking chair (a few months younger).


The picture of Julia really cracks me up. It is one of those baby pictures that I can look back upon and really "see" Julia in it. That is HER.

Hope is Alive

My church choir had a tradition of a Palm Sunday concert (now we have a Good Friday concert instead). There was a focus based on an event that transpired in the past year. In 2006 it was Hurricane Katrina. Our choir conductor composed three a cappella songs for the concert.

One of them has stayed with me ever since and I find it a great source of comfort. Those of you who know your bible verses will recognize some of them here.


Hope is Alive - J ames DeJ arn ette*

We have this hope as an anchor for our souls.
An anchor firm and secure.
In this world you will have tribulations.
But take heart I have overcome the world.
Hope is alive.
Fear not, for I have redeemed you
I have summoned you by name
You are Mine

When you pass through the waters
I will be with you.

Take heart, I've overcome the world.

We have this hope as an anchor for our souls.
An anchor firm and secure.

Hope is Alive
Take heart, Hope is Alive





Hope is Alive


Indo Music Code Generator by musik-live.net

* I want to give credit where it is due - but avoid search engines - therefor, the extra spaces.

My closet

My closet is about 1/2 functional right now. It is going to be a problem when I need to dig out my sweaters. Nathan's bed was in our room, in front of our closets when he died. Sometime that afternoon I grabbed the pillow he had been lying on and threw it in one side of my closet. The pillow has been followed by a bag from the funeral home with things from his memorial service. I also threw in a large bag of chemo and accutane that fell on me when I tried to get something out of my bathroom closet. It needs to be disposed of safely and I am not sure how. Lastly, there is another bag from the funeral home in my closet - it contains a temporary container with Nathan's ashes in it. I guess we're working on the avoidance method for all those things right now.

Perhaps I can do without my sweaters this year.

Random stuff

1. So Wednesday night went ok. We didn't end up picking a class due to mundane details about the kids choir schedule. Luke and I just chatted.

2. The car handle broke off my old car a few weeks ago. We haven't used it much since and actually have the part on hand now and will attempt to fix it. However, I drove it to choir rehearsal tonight. When I got back to my car, I put the key in, unlocked the car and proceeded to almost fall over from trying to grab the non-existent handle. Old habits die hard, I guess.

3. Every day while I wait at the bus stop for Julia, the same truck drives by on his way home. We have taken to waving. I have decided that it really bothers me that this same thing happens at the same time every day. Some people like that kind of stuff and take comfort in it. Not me. Luke likened it to the movie "Groundhog Day". I wouldn't say I am terribly adventurous, but apparently I really don't like routine either.

4. I wish I had a time machine. I would take it back to when I was about 17 years old. It would be a summer night and I would drive out in the country with friends and roll the windows down and play great music and feel the wind in my hair. I would love that sense of freedom and also my whole life in front of me. Can someone bottle that up and make a drug?

5. Speaking of drugs, I am now taking 3 prescriptions daily at a cost of $60 a month. The pharmacy tech knows my name (and she wasn't even there when I was there almost daily for Nathan). I am almost 35. Why do I feel 80?

6. Related to the drugs....I used to love to go to bed. I fell asleep easily and slept fairly well all night - except for the night terrors. At times they would keep me running around my room doing "things" for up to two hours after going to bed. Sometimes they were bad, sometimes I hardly had them. I still had a good nights' sleep most of the time.

Since Nathan died a few things have happened. First of all - I don't really want to go to bed and when I do - I could stay up all night! It used to be that if I watched TV for 15 minutes in bed I was fast asleep (5 minutes if it was Saturday Night Live for some reason). Now, I have been watching all kinds of stuff on, good and bad and I am not falling to sleep. I am not trying either but it is weird for me. I guess part of it is not wanting to wake up and start another day. Secondly, my night terrors escalated after Nathan died. Instead of having them occasionally, for an hour or two, I was having them every night and ALL NIGHT LONG. Hour after hour I would jump out of bed as the imaginary thing tried to do whatever it was to me. I would head downstairs, realize I needed to go back to bed and repeat. So - I am now on a sleeping pill. It works REALLY well. It cost a little more than a dollar a night and Luke tells me it is worth it.

So - that's the potpourri for today.

Wednesday

During the school year, our church has Wednesday night dinner and kids choir and adult classes.

Tonight we are starting back up and I think that is why I am just feeling nauseous. Nathan loved Wednesday nights. He loved to sing and loved to eat and always had a really good time. In fact - the picture is from last fall's brochure and he is in choir practice. Tonight we have to go back without him.

We had signed up to be in a small group bible study on Wednesday nights and I just back out (it was to start next week). The leader called last night to say it would be 12 people (yikes - a few too many for me right now) and that they would be meeting in the Parlor. The only time I have set foot in the Parlor was at Nathan's memorial service. It was the place for us to mill around and wait to be walked into the sanctuary. I can't stand the thought of being back in there right now! I just called the leader and she was very nice about it. There are other, large, classes for us to take on Wednesday nights and so we'll just do that.

Refreshing

Scenes from an imprompto drive through the foothills on Saturday.

On the Edge

I have struggled with this from day one of being a stay-at-home-mom. There have been times when it has been better than others. Right now it is bad.

I NEED TO BE ALONE from time to time. I am occasionally alone in the car. On occasion I will run an errand by myself. I have church choir as "my" activity, but it is not alone time - just time without my family. I signed up for a bible study this fall. Lauren will be in the nursery. Still not what I need. Some friends and I are going to trade our toddlers on Mondays. It will be good - but still only twice a month for a few hours. Not going to be enough....

Sometimes when Lauren is napping, it is almost like I am alone - but I am still in charge of her and Luke is still in the house, working.

There have been periods of time that I have had scheduled, weekly, time to myself. I am so much happier. This lack of alone time is the worst part of my job.

Only 2 more years until Lauren goes to preschool......

Big Hair

This one is for my friends Lisa and Mina. Mina and I were recently talking about this picture and I ran across it. I can't recall exactly when this was taken, but I am guessing around February 1986.

Got to love the hot-rolled hair.

One Month

It has been one month. How is it that time just goes on? It has been almost three months since Nathan began really declining and stopped walking. So - in some ways it seems longer than one month. One thing that stays very clear to me is the memory sweeping his hair to the side with my hand and kissing his forehead. I can always do that in my mind and it feels very real to me.

I had two phone calls today from people who just learned that Nathan died. There were excuses about the busyness of summer. I'm thinking, why make excuses? - it doesn't matter to me why you didn't know.

Making ourselves do things....

We spent the past weekend with my brother's family up in the mountains. We were really waffling about going. It was one of those things that sounded fun, but in our depressed state also sounded like a lot of effort.

But - we bucked up and went. We had a really good time. Nathan loved it there - so that was hard. What else is new, though. Everything without him will be hard at first. It has already been four weeks.

Nathan tribute

Someone who I do not know, made this video about Nathan. She (or he but I am guessing she) has made other videos of other neuroblastoma kids.

It is kind of hard for me to watch. I have "hidden" those pictures on my hard drive so I don't run across them.

I will put it here, but not on caringbridge - because she put this blog's address on it and though I know some of my caringbridge readers have found this site through a search engine - I don't really want the two linked since this is more personal and I might feel less free to post things on here if I know that the person sitting next to me at church that I don't know very well is reading it.

China

I have always liked this song by Tori Amos. It played on my iPod today and it felt different. I feel like it was directed at me.

I am not exactly sure how I am dismantle the great wall without it causing me to completely fall apart.


China all the way to new york
I can feel the distance getting close
Youre right next to me
But I need an airplane
I can feel the distance as you breathe

Sometimes I think you want me to touch you
How can I when you build a great wall around you
In your eyes I saw a future together
You just look away in the distance

China decorates our table
Funny how the cracks dont seem to show
Pour the wine dear
You say well take a holiday
But we never can agree on where to go

Sometimes I think you want to me to touch you
How can I when you build a great wall around you
In your eyes I saw a future together
You just look away in the distance

China all the way to new york
Maybe you got lost in mexico
Youre right next to me
I think that you can hear me
Funny how the distance learns to grow

Sometimes I think you want me to touch you
How can I when you build a great wall around you

I can feel the distance getting close

Nathan's memorial service

Spencer

There is a boy who has been fighting neuroblastoma for over five years. Sometime last year, this beautiful piece was created about him. It is truly amazing to hear his perspective as a child fighting this awful disease. He is several years older than Nathan was, but it really gives me comfort to hear what he has to say.

First day of Kindergarten

Here they are, ~A~

Two weeks

So now it has been two weeks. Today has been a hard day as I find myself on the verge of tears constantly. I have a friend coming to visit (Hi Mina!) and we absolutely had to shove some toys out of the way so she could sleep. Luke decided to organize and so this morning I decided to try but it was overwhelming going through all of Nathan's toys. I was just so darn sad that he can no longer play with them. I just cried and cried and had to stop. I told Luke I could shove but that was all. So - he cleaned the whole thing. He said it was hard for him too - but he did it. We have not attempted to go through his things and I think that is a LONG way off.

Tomorrow - back to the real world. Julia goes to school, Luke goes to work and my parents leave. Yikes.

Practicalities

I hate all the practical things that must be done after Nathan's death. At school today I had to ask the office staff (who loved Nathan because he would spend recess chatting with them when he couldn't run around) to take his lunch funds and put them in Julia's account. I am currently trying to fax his death certificate and a letter from his doctor to an airline so that we can rebook a flight he never could take and I could put Lauren in his seat.

It just doesn't seem right to be dealing so cavalierly with his death - but that is reality. It sucks.

Sick Sick Sick

I wrote on Saturday on Nathan's page that I was sure some kind of crash was coming. It did.

I spent 8 hours in the ER on Sunday. Hope this isn't TMI but after a cat scan I left with a diagnosis of colitis and a wayward IUD. I took it easy yesterday - got the IUD taken care of and went to bed. I woke up this morning very nauseas and threw up all morning and am currently still feeling like crap.

I was remembering that I got very sick during Nathan's first surgery in NY and also during his stem cell transplant. I can't help but wonder if my body is just revolting from the incredible stress.

The last time I threw up this morning, I said to myself that I simply could not take anymore. I could not handle anymore. Thankfully the throwing up ceased.

I really need my body to heal now - I have no tolerance for any of this.

One week

I don't know how it can already have been one week since Nathan took his last breath. The week has been incredibly busy making all the arrangements, seeing all the friends and family and having the memorial service.

In case you missed it on Nathan's page - here is the link to the obituary.

I may put the audio of the memorial service somewhere once I get it. Then again, I may not since Julia WAILED through the second half and it is most heartbreaking thing. She was fairly quite through the eulogy so perhaps I will at least put that up.

We are currently all at home with no one else here. There are only four of us now - very strange - very wrong.

Looks

I have been resisting new blogger - so I finally bit the bullet - not sure yet if I like it so it may change again. Meanwhile I feel like I am missing some links - let me know if you want one!

~~Nathan~~~

Nathan took his last breath at 9:22 am this morning, in our bedroom right by the windows that shone light on him in this picture the day we brought him home from the hospital

Contradiction

In the midst of Nathan's body shutting down, he has a new tooth pushing its way through. It confounds me.

Already missing him

There is so little of Nathan left. I can hardly remember a walking, playing Nathan. I hope that in the future my memories of him for the majority of his life are stronger than those f the last few days. He looks even worse than yesterday. His right eye is almost swollen shut. he can only keep his eyes open for a few seconds at a time. His spirits are actually good today though. He wants to be doing things even though he can't. Luke took him to 7-11 in the jogging stroller a little while ago for a Slurpee.
Here is Nathan on May 4













May 30










June 2








June 20








July 3








July 13








Now

Thou shall...

So - we got a call from the Hospice Chaplain yesterday. She wanted to pick a time to meet with us. I told her that I needed to talk to my husband because we are not sure we will want chaplain services. She seemed flummoxed and told me that we had to meet with her at least once because she had to document in the case file our "spiritual something-or-other".

Huh? I mean we can't refuse to meet with her? If/when we decide we want chaplain services we have two resources we will use first. One, our own church or two, a friend of the family who is a minister at a local church. People we actually have MET before. We have let enough strangers in our house, like the nurse and nurse practitioner and we are working with the social worker, whom we didn't know. That is enough extra people we don't know to share our feelings with! (not talking about all you people I don't know..I don't have to look you in the eye).

What if we were not at all religious. Would they still insist we meet with her? Geez! Talk about adding stress at a difficult time.

I put the chaplain off until today. I guess I will call the social worker today and ask her what the deal is and possibly have her deal with it. We may be getting a reputation as a difficult family. Oh well.

I went....

At the last minute I decided to go choir to choir practice. It was just fine. They finally put Nathan's caringbridge site in the rehearsal order notes and so most people were up to date and so I didn't have to do much updating. Most left it at "good to have you here" or "you are in my prayers".

It felt wonderful to sing.

Opposite of nesting

So - people say that women "nest" before they have their baby - cleaning and getting things in order.

I spent a whole day doing just that the other day. Anyone who knows me well knows that cleaning is something at the bottom of my list and that I am not very good at, either.

Am I un-nesting?

Nathan slept most of the day that day. Keeping busy is a good thing. When I am not busy, or especially when awake in bed I have to think about things like funerals.

I also have all kinds of absurd thoughts about the timing of things to come and conveniences of the various timings.

I also think about the future and all the things I will be able to do again and the things I can offer Julia and Lauren without doctors appointments, etc.

There is basically nothing I can think that is good these days.

I have the urge to go to choir rehearsal and sing. I know it would be good for my soul. If it weren't for... "people who care about you?" (Luke completed that for me when I was pondering aloud about it). He's right - they all want to support me, but I just don't know if I can handle it. Plus - part of me will wonder if I am being judged for being there, instead of at home with Nathan.

I hope you don't mind the ramblings....I have been updating Nathan's site daily and that

Smiling

One of only a handful of reasons why I am smiling these days.