Friday, June 26, 2009
What I won't be doing this weekend
Are you kidding me??? I can only assume her ANC (immunity) was low and so she should be kept out of public places. Father decided to take her to the beach. Mother disagrees. So they scream at each other about killing her in front of the child? I personally have met many cancer kid families and I cannot imagine this taking place.
I guess I was lucky that Luke and I were on the same page about most of these things. We took Nathan places when his immunity was low. We weighed the risks with the rewards and waulity of life and made the decisions. We did this as two loving parents in a rational discussion. If we had disagreed we would have deferred to the one afraid of the risk.
Anyway - the crux of this movie is about using one child as a donor to the other and I just don't feel that anyone who has not made the decision themself should have the right to initiate a discussion and manipulate the general public's feelings about it. What could be worse than weighing the life of two of your children and making decisions about it. How dare anyone assuem they know what would be right and wrong if they were in the situation.
The decisions made just about childhood cancer are hard enough. One would think that your child gets diagnosed and then the doctors tell you what the plan is and you follow the plan and then your child is cured. Luke and I could not get over the sheer number of life and death decisions we had to make for Nathan from a time not far into his treatment. We felt so ill-equipped to make such decisions yet there they were, plopped at our feet, as his parents we were the only one who could make the decisions. It is very, very stressful. I won't even get into the types of decisions you make when your child is dying. If anyone, who hasn't been there themselves, ever makes a movie about that I may just have to hunt them down.
I am glad childhood cancer will get exposure this weekend, that I can say, but I cringe for the misconceptions that will be spread about life with a cancer kid and what it is to be a parent of one.
Oh well.
Sunday, June 21, 2009
Sat. night dream
I'm in a house that is my house but not my actual house in real life. There are tons of houseguest and kids about as well as some friends of friends that I do not know. Nathan walks in the hall and he is about 5 or 6 and is wearing pajamas - perhaps his blue and red hot wheels pajamas. I smiled at him and told him I was glad to see him as I hadn't seen him much today because he's been off playing with all the kids. He walked out of the room and the person I was standing with asked if he was my son and I said yes.
This is one of the only dreams I have had of Nathan where I do not acknowledge during the dream that Nathan is actually dead. He just sliiped into my dream as if he was a part of my everyday life as usual. It was a nice treat.
Saturday, June 20, 2009
Heartbreaking
He's currently in Vermont...his parents and uberdoctor Sholler are trying to save his life.
I've "known" Ryan and Missy via emails and blogs for many years.
The latest blog entry and picture just break my heart. Hitting very, very close to home.
Please say a prayer or two for this wonderful family.
Monday, June 15, 2009
Should be nine
Last year I decided I just needed to let it go by. This year - pretty much the same. It is still too painful to plan to "celebrate" it in any way. We were in Hilton Head last year so it was a bit easier to let it go. This weekend I kept thinking about how we might have been having his party.
I feel a bit guilty that I am not one of those who feels like they can celebrate it. I feel like it is somehow dishonoring to Nathan that I can't bring myself to mark the day in some happy way. I just can't.
It doesn't help that there were not very many good birthdays to remember. 1 and 2 were good. 3 he was having chemo all day. 4 he in remission but was having the very painful antibodies in New York City. 5 was good - we found out he relapsed a few days later though. 6 we had learned the previous day that he had relapsed again therefore cutting his survival chances to nearly nothing. 7 was pure hell. 7 he was dying. We had actually given him his birthday presents the week before because we thought he might not live to his birthday. 7 he barely made it downstairs to the table to blow out his candles but was instead in bed most of the day. Those images are very hard to get out of my head.
I suppose I will let the girls know tomorrow that it is Nathan's birthday. I recently had a discussion with Lauren about Nathan's birthday and she was surprised he had a birthday and I said that even though he was dead it was still his birthday. She paused and asked me when was his "un-birthday". I was surprised and asked her if she meant when was the day he died and she said yes and I told her.
Our zoo is having a members only night tomorrow and we might just go to that. I Don't know. That in itself will be hard because the only other times we have been to the zoo at night was for a special night for ill children. The last time we did that with Nathan he was unable to walk and in lots of pain but he wanted to go anyway so we loaded him in the jogging stroller. He and I had just left the clinic where I had rushed him in earlier due to pain I could not control at home so I brought him for some IV pain meds.
So - there are minefields everywhere. Painful things. I am thinking it will be better after July 29 but between now and them I am just trying to get through.
Saturday, June 13, 2009
Friday, June 05, 2009
Past Life
It has been 15 years last month since I graduated (ouch!)
I've been a stay at home mom for 9 years now. Sometimes I forget about my accomplishments in my "past life".
I found these two documents and it was nice relive some of the pride I used to have in my academic achievements. In high school I was an A and B student. Nothing great. I didn't expect anything better in college.
A little background..I went to college to major in pharmacy. By the end of the first semester I was fairly certain that wasn't what I should be doing but I didn't know what I should major in instead. My family were math/science people and that is what I knew . A quick aside to say that my mother taught biology and she was teaching out of the exact textbook I was using at my college for biology and even with her help I still scraped out a lowly C. My mom suggested I take an accounting course at the local community college that summer to see what it was about and so I did and I liked it. I then enrolled in one at college and it clicked. I missed a total of one question on all three exams combined and two on the final. I was still in the school of pharmacy at the time and they sent this letter to me.
The higher level classes I took, the more I liked my major and the better grades I got. My GPA went up and up but I had some not as stellar grades from my first year in college. I knew I was on the brink of graduating with honors but did not know if it would happen. As I lined up in the armory on graduation day I was handed an envelope with this letter in it. It was one of my proudest moments in life thus far.
Saturday, May 30, 2009
Zoo fun
The best thing was that the grizzly bears were awake and one was swimming. Here are some pics and a video. Also a picture of the family.
Tuesday, May 26, 2009
How Many?
I have to say I hold no ill-will towards him. I cannot expect him to understand, but I also will not fit neatly into someone else's view of things.
Friday, May 22, 2009
Dream
I was in the inpatient side of MSKCC. I walked through the halls and accidently walked through the nurses station. I ran into Dr. K and he said my name with surprise and asked what I was doing there. I told him I was there for my son. He made some comment thinking I was there to remember Nathan being there but I told him that Nathan was there and I was going to go get him. I got to his hospital room and I picked him up and was holding him cradle style. He was his 7 year old size. He was sweet but I could tell I was hurting him. I then picked him up chest to chest an he wrapped his legs around my waist and said that was much better and smiled at me. I took him right out of that hospital into the sunshine.
The feeling of being near to Nathan is still with me this morning. I love that.
Sunday, May 17, 2009
Thanks for the reminder....
After reading went straight to the bottom of the email and hit unsubscribe.
p.s. another new post below this one.
Dance
I have a video of the dress rehearsal (which is why there is talking and people wandering around during it) and some pictures.
Enjoy!
Thursday, May 14, 2009
Kids Church Choir Concert
Monday, May 11, 2009
Weekend
On Sunday we had already decided to not go to church in the morning. The idea of me sitting in the choir loft during all the mother's day mentions was not appealling and singing the same song we sing every year on Mother's Day was not appealling either. So - we relaxed in the morning for a while and then Luke took the kids to church just to do his greeting/handicap assistance post but he wanted to leave me home in peace and people enjoyed the girls greeting.
They cam home with some sunflowers for me and we hung out the rest of the afternoon and had an early dinner and then went to the 5:30 service at church followed by a concert by Chi Rho - and men's acapella group from Wake Forest University.
All in all and good weekend and not terribly hard.
Friday, May 08, 2009
Mother's Day Tea
I have been in tears anticipating Julia's tea for a while now. I told her last night how I was feeling and that I hoped to make some new, happy memories of event with her.
I was doing just fine until she had to read her placemat aloud. It is one of those complete the sentences about mom. She wrote and read aloud (among other sentences), "My mom wishes....Nathan was here". Her teacher quickly handed me a tissue and I left the room for a few minutes to compose myself. I hate crying in front of people and so I managed not to do so, pretty well.
She seemed upset about something towards the end of the tea - I'm not sure. I feel bad that when everyone else was saying their mom's wished for money or clean houses that hers had to be about her dead brother.
In a semi-ironic timing - I brought along a check to the school. They are starting work on part of the garden that we are donating a bench/statue and money for a tree and other landscaing in memory of Nathan,
Tuesday, May 05, 2009
New Skin
Saturday, May 02, 2009
Friday, May 01, 2009
Kitchen
When I looked around my kitchen it DID show
pieces of my life so I thought, what the heck - I will do it - but not as a showcase.
Let's start with the cainet under the sink. To the left of the bin you can see a nice hole that happened last week. All the years of water leaking down there finally put a hole in the plywood.
One thing I like in my kitchen..Lauren eating breakfast! With her at the counter is the spray bottle left out from the other night when we made cedar plank salmon and it said to have a spray bottle on hand if it caught fire (outside, not in the kitchen). You can also see Lauren's medicine bottle. She has Impetigo. It is finally going away after 17 days on antibiotics. Julia's school folder is also on the counter. It has her Mother's Day Tea information in it for me to send back. I am semi-dreading the tea. It was the last school function I did with Nathan before he died.
Next for my windowsill. First, there is the beer glass that was hand washed and dried but for some reason not put away and is intead on the windowsill. It has been there for weeks. There are also 3 african violets. One of which is practically dead and the another on its way to dead. There are the sunflower plants that the kids grief group stupidly had my girls plant. As you can see only one sprouted. Why do you give bereaved kids something to keep alive????
Finally on he windowsill is Lauren's Thanksgiving craft from preschool. Can you guess how long it's been up there?
Here is a counter area. Lauren has left the drawer open after getting out her spoon. Her plate from last night with old hotdog seems to be still out on the counter. Yum!
A bag of construction paper I need to put back down in the basement. It has only been out since Monday! Notice the snowman nightlight the kids put in the outlet...yes - been there since Christmas but they like to use it so I have left it.
Are you at all surprised my fridge is messy too? School calendars, kid artwork, pictures, school lunch menu.
If you get this far, you might want to notice I posted a more serious post yesterday, below this one.
Thursday, April 30, 2009
Chronic Pain
This is what I was thinking about yesterday in Wal-Mart. I walked passed the legos and the trucks. What happens? I nice big stab of pain to the heart. Yesterday I acknowledged it - most of the time I do not because frankly, there is pain everywhere! There are literally very few places I could go or things I could do that do not remind me of my loss of Nathan. Everyday, everywhere, I am confronted by his loss. Grocery stores, school, church, my house, doctor's offices...places I have to go every day as I go about my day. I even go to bed every night a few feet away from the place he died.
It is chronic emotional pain and it cannot be fully controlled. Some days, I seem more anesthesized than others. Some days I can control the pain better than others. Regardless, it is there, every day and all the time. I suppose some of you who know me well wonder about this because I am very good at hiding the pain.
Some days I am just so tired at the end of the day from swallowing the pain all day and not letting it show.
It is there.
Tuesday, April 28, 2009
Window
It is this picture.
I have this picture on flickr. I am not sure how they got it and came to use it. I am not upset they are using it, but I only wish that his name was on it. So, I started a bit of a campaign on Facebook to get the word out that the little boy in that picture is my beloved Nathan.
I love this picture. Nathan is watching all the traffic in the city. I love that you can see his feet. I can imagine the feel of my lips on his bald head when I see this picture.
So, if any of you readers are in that area and see the picture, know it is Nathan.
Friday, April 24, 2009
Fee Fi Fiddly I O
That was Nathan's favorite song at that age and it was such a nice memory to hear Lauren singing it out of the blue like that.
Here's a video of Nathan (and a little of Julia) singing it:
Friday, April 17, 2009
Evil Eleven
Anyway - to summarize - I have night terrors and have had them for years. They have gotten much worse in recent years. I have them just about every night. Some nights they are just annoying and other nights they are very distressing. I will have the same night terror for many nights in a row and they get worse every night until I become very upset in the middle of one and then it seems to reset and a new theme starts.
Last night I sat straight up in bed and exclaimed that I had figured it all out - it was all the number 11 that was the problem and apparently the solution was in the basement in the crawl space. I told Luke that I was going to go to the basement. Poor guy thought I meant I was going to sleep down there to not bother him. As I slowly woke up I realized I couldn't figure out what exactly I was to do in the crawl space and decided to just lay back down and go to sleep.
So - I am really curious about this one. It was so very clear to me that the number 11 was the root cause of all my night terrors and problems.
hmm....
Sunday, April 12, 2009
Happy Easter
Here are the girls in their Easter finery.
We have had several inches of snow today - typical spring weather in Colorado.
Missing my boy today. Easter 2007.
Thursday, April 09, 2009
Dream
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| From July 2005 |
Erin
Saturday, April 04, 2009
Late night with Depeche Mode
On our trip, when we/I decided we should drive all night to get home to beat the storm, shortly after we got in the car we started talking about road trip songs. We were fairly desperate to remain awake and alert. I was driving because Luke had just come down with the awful cold I recently had and he had taken out his contacts already and we wearing glasses with an outdated prescription. I am not very good about staying up late or driving at night.
Luke lamented that we didn't have the song "Route 66". We'd been on route 66 earlier in our trip.
I kind of smiled and told him, that we DID have a version of it on my iPod. Depeche Mode's Route 66/Behind the Wheel remix. I bought the RECORD many, many years ago and had found a digital copy years ago when everyone was using limewire.
Being the good sport, he loaded it up on my iPod and played it. I knew every word. Then, the next song played and I sung along. The weather was getting crummy, we were climbing up the mountain on a 2 lane highway with little visibilty from the blowing snow. I found myself enjoying all the old songs, plus I realized that I still knew every word and singing along was keeping me awake and focused on the road in front of me.
So, I listened to Depeche Mode on shuffle for a few hours, at one point commenting to Luke that it was a bit disconcerting shuffling between the 80's and 90's stuff because the different albums had such different feels to them.
The highlight was listening to PIMPF as we got to the top of Monarch Pass. I think Luke even kind of liked that one.
I'll have to revisit Depeche Mode again soon.
Thursday, April 02, 2009
Round up
1. Lauren is feeling much better. She suddenly started eating a bunch and generally perking up. She had a rash around her mouth and nose and so I took her to the Dr. and she is on ointment for that. Her weight was good (up almost 2 pounds in 6 months). So - I am relaxing about her a bit.
2. Yesterday was April 1. Many of you know that Nathan was diagnosed on April 1, 2003. So, along with all the joking and wishing we had gotten a big joke that day, it is not my favorite day. However, a wonderful thing happened yesterday. It will now be thought of by me as Grahe's birthday, the newborn son of very good friends of ours.
3. Have you tried these? Yummy?

4. I recently got a great deal on Guitar Hero World Tour on Amazon ($119!) We have been having a blast with it. Julia especially enjoys the vocals. Here's a clip of her on Hotel California. Ignore the messy family room. Oh and Lauren normally plays the drums on her own. I usually play lead guitar.
Sunday, March 29, 2009
It's that time again
She is just so very petite. I can encircle her wrist with my thumb and forefinger with a good bit of overlap - it's like the diameter of a quarter. I can fairly easily span her waist with my thumbs and middle fingers. She is also very pale.
So, when she is under the weather, so really is under the weather. I suspect she just doesn't have a lot of reserves. She has had a cough for several weeks now and then she was throwing up with a fever on our trip. Now she has a rash under her nose and purple veins showing under her eyes which make her look a bit like she has black eyes, which is an automatic panic symptom since it was one of Nathan's first symptoms. Now, she does not have the kind of black eye he had, not even close - it just isn't something I like to even think about.
I know she is just having trouble getting rid of her cold. She is a bit congested and may be having sinus issues. Yesterday she was super cranky and then was sent to her room where she fell asleep. Luke got her up for a snack and then she slept on him for a while longer. All these thing can be easily explained. She's had a cold, a virus, been travelling and lacking sleep.
Still - I just get panicked to think there could be anything more severe wrong with her. A visit to her doctor is probably in her future this week. For my sake.
These things have been bothering me but I have been trying to let them go, but tonight, Luke commented on the eyes and somehow that makes it worse that he noticed because maybe it is more valid. So, now the freak out is in full force.
I just have to add that I don't feel this way about Julia for several reasons. She is very robust and somehow, since she grew up with Nathan through it all she passed a lot of the milestones and age ranges while we were busy with him and so I didn't have time to freak about about her and now she is so big and so healthy. Lauren is young, like Nathan was, and so her issues just trigger the response in me.
Thursday, March 26, 2009
Not while they are eating
After something like the 10th time we passed it I said something to Julia about hoping she didn't grow up and have that for her job. She said she wouldn't want to do it because she wouldn't want to dance for people while they were busy eating.
She seemed to be completely oblivious to the reasons the women were dancing that way, dressed that way. Which makes sense, since she has no frame of reference. She didn't find the dancing "sexy" because it isn't even in her vocabulary. She just thought that it wouldn't be good to be performing for people who were not paying their full attention to her and especially not doing something as base as eating.
I hesitated to post this, because quite a few of you I know will be horrified that I subjected my child to this. The truth is, it did make me uncomfortable that she was seeing it, but what was done, was done. I doubt it increases her chances of falling into such a profession. It was more about her naivitee and trying to keep it that way. It seems fairly intact...
Spring Break
We had a good road trip. It was not without its difficult moments, but I guess that makes it truly a road trip.
What follows is a summary of our trip and it is long and likely boring so you may or may not want to read the whole thing - I just wanted to write it all down for my sake. Here is the abbreviated version:
Family
Friends
Swimming
Eating
Joshua Trees
Hoover Dam
Las Vegas
Walking
Vomit
Walking
Volcano
Walking
Red Rock Canyons
1 hour hotel stay
Driving through mountain pass at 1 am in the snow
Home
We left early Friday morning heading south. We traveled for about 13 hours to Tucson, AZ. Lauren had been excited about the trip but didn't comprehend it meant all day in the car - so she was a little cranky.
They have driven longer days than that before, though, so they did fine. We even did well for meals, having Fuddrucker's for lunch and Cracker Barrel for dinner. It was a long night because Julia was restless and we were right next to some train tracks and heard train whistles all night.
Saturday morning Luke took the girls down for the continental breakfast while I showered and then I ran off to Starbucks quickly for my breakfast, which was a nice treat. We were then off to my aunt and uncle's house but stopped at a park on the way there.
At my aunt and uncle's house were also my other aunt and uncle who live in Northern Virginia. It was a good opportunity to see them all. It would take a whole post to itself to describe the relationships I have with them, but they are very special people in my life and it was wonderful to visit with them. The girls explored a bit while we all chatted
and them they grabbed my aunt Joan for a while to play with and pick interesting flowers and seeds from the yard and make lemonade from the lemons growing in the tree
. We all went to lunch and then back to the house for the afternoon. The girls ( and then Luke ) went swimming despite the pool being (currently) unheated. It was in the 90's and so they did just fine.
The adults spent the afternoon just catching up and relaxing. It was a wonderful visit!
Saturday night we drove to Mesa, AZ and checked into a hotel there after getting some In and Out Burgers for Luke and I (McD's for the girls). I have to admit to being quite scared of the neighborhood our hotel was in but as it turned out, it was a really nice hotel and perfectly safe. We all slept well and got up in the morning and found a nearby First Presbyterian Church to attend (after an unsuccessful detour to Target to get some sandals for Julia). It was a good service and it is always interesting to go to a different church. I was kind of thankful not to be in their choir - their robes were bright teal with big white crosses on the front and white in all the folds! After church we went our friends Jim and Pat and their kids for lunch at a really neat farm/restaurant. We then went to a park and Julia proceeded to hurt her toe. We decided to part ways for a while and went back to the hotel to let the girls swim. We had the pool to ourselves and had a lot of fun swimming. After the swim we walked to a nearby Dairy Queen for a snack. We then chilled in the hotel room for a while, watching Star Wars and reading. We went to a large mall after that and Julia tried on every sandal in the place, finding none to be comfortable and then we met our friends for dinner at Rainforest Cafe. The girls were pretty worn out by this point but were good sports and patient while we all talked. We went back to our hotel and crashed.
Monday morning we were off to Las Vegas. It took us a long time to get out of the Phoenix metro area and then took a four lane highway to Las Vegas. Along the way we were pleasantly surprised to find ourselves driving through a forest of Joshua trees. We pulled into the Hoover Dam around 2:30 and Luke and I were very impressed by the size and scope of it, especially the new bridge under construction there.
Julia was duly unimpressed and made it a point to tell us so. In fact, she seemed to enjoy telling us how uninteresting everything we saw was! She is just seven, not thirteen, right? She did think our castle shaped hotel was cool at least. We got checked in there and went off to wander the strip a bit, play some arcade games,
and then have some dinner. We were getting ready to go out to see Vegas in the dark when Lauren threw up all over herself and then bed. She hadn't been feeling so great for a few days. We got her cleaned up and new linens and such, which all took quite a while, and then Julia and I went out to the drug store on the strip to get some supplies for Lauren. We enjoyed our jaunt out in the night but it was almost 10 by the time we got back and Julia was so tired that she fell asleep the moment her head hit the pillow.
We had set up a little bed on the floor for Lauren with a bedspread on a plastic bag. It was a long night as she crinkled around on the plastic and asked us for things (such as kisses and hugs) but she didn't get sick again.
The next morning Lauren was still feeling low and I went out to get donuts and failed to bring any money and so had to come back (in the large casino this took at least 20 minutes of walking) Luke and Julia then went out to get them and the credit card machine was down so they came back empty handed as well. I finally went out again and got some, but it had been something like 2 hours since I first went out. We convinced Lauren to just ride in the stroller with us rather than split up and have one of us stay in the room with her. We went to Circus Circus and she actually perked up and rode some rides (yes - rides on an upset stomach, what could we do, it was vacation?) and did not get sick. I took Julia on a roller coaster. We walked to get into the line and then we saw that it went upside down. We had recently had a discussion about how she did not want to go on an upside down roller coaster but we were in line and she bravely agreed to go. Well, she was crying by the time we got off and was terrified and hated it! We told her how proud we were that she tried it and then had fun the rest of the time. We had some lunch at which Julia lost a tooth and Lauren napped in the stroller and then went back to our hotel (stopping to have some ice cream). After a rest, Luke took the girls to the midway area while I gambled. I took five dollars and played a penny slot for a minute or two, and then some video poker for about 5 minutes and had $17. I then went to a 2 cent slot machine and played it for another 5 minutes and had $25. I was so pleased to have turned $5 into $25 and I didn't want to lose that $20 and so I joined them playing carnival games. We all won some cheap stuff and had fun. We went to see the Luxor on the tram and then we went back to our room for a while and then headed out on the monorail to see the "volcano" erupt at the Mirage. This took us an hour to just get there with all the walking. The MGM grand itself took about 20 minutes to walk through to get to the monorail. The "volcano" was very cool and totally worth the walk.
After that we walked on the strip a bit and then got some food and got back on the monorail. Lauren slept in the stroller after the volcano was over. We got off the monorail and I wanted to avoid the long walk at the MGM and we were convinced that they had taken us on some circuitous route through it and so we tried to walk out of the parking garage to the street. We found ourselves in the taxi staging area and then went into some dark back door of the casino after an employee let us in and found ourselves in the kitchen area. Luckily an employee opened another door for us and we were magically inside the main casino again. We hiked back to our room and went straight to bed. Our feet were killing us!
On Wednesday we packed up and got on the road. Lauren was still feeling crummy but just slept in the van. Julia watched movies while Luke and I marveled at the red rock canyons we saw in Utah. It was truly beautiful country and we were so glad to see it. We got to Grand Junction and got some food and bathed the girls. At that time I got online (had not been able to do so for free in Vegas) and saw the weather forecasts for blizzards and such for last night and today. I felt that if we left in the morning we may not get home for a few days since we had to go over mountain passes to get home and these often close in bad weather. So, we decided to pack up and drive home. IT was about 8:45 pm. we ended up driving on 2 lane highway since that was the more southerly route and looked to be less snowy. The girls went to sleep and I did some major white knuckled driving through snow and curvy mountain passes but it was manageable with not much snow yet accumulated. We made it home around 3 am.
Now we are snug at home waiting for (experiencing now as I finish editing this post) the blizzard. It better be a good one to make my decision to drive through the mountains in the middle of the night seem wise and not foolish.
Great trip!



