Kitchen

I read a blog. She is doing a thing where everyone posts pictures of their kitchen and shows it off and wants her readers to do the same. As expected - it seems like most have neat clean gourmet kitchens. I had to laugh thinking about showing off mine. I don't love my kitchen. Mine could use some loving, but it is not getting it! As you will see - I'm not good at putting things away.

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. It is the same teacher, same classroom, probably same activities. I am trying to gear myself up for it.

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!














Now onto the counter leading to the family room. Always an interesting collection of stuff here. Today we have pliers, from when a plastic cup got sucked partway into the disposal and became wedged in it. I had to get the pliers to remove it. That was a few weeks ago. We also have Julia's art portfolio from the school art show last night, sunscreen because it was actually hot here the other day, and some other random stuff.

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.

















OK, so I DO love my dining room. I wish it were bigger but I like it. It is actually pretty clean too!

If you get this far, you might want to notice I posted a more serious post yesterday, below this one.

Chronic Pain

I don't know what it is to have chronic pain. I know a lot of people deal with severe pain that cannot be fully controlled every day of their life. They have to go on with their lives though and so they just continue to do, despite the pain. If you don't know them, you might never know what they are dealing with, even if you are talking with them face to face.

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.

Window

I got an email from a friend the other day. Her son, Elias, was treated at Memorial Sloan Kettering with Nathan. She told me she was grocery shopping (NYC suburbs) and saw a picture of Nathan at the checkout counter as part of a childhood cancer fundraiser. She told me she was taken aback to see it and she proceeded to tell everyone in line with her about Nathan.

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.

Fee Fi Fiddly I O

When I was upstairs getting ready this morning I heard Lauren singing, "I've been working on the railroad" I have no idea how it got into her head.

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:

Evil Eleven

I am pretty sure I have written on here before about my night terrors, but perhaps not. Those of you who know me have heard my stories.

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....

Happy Easter

Easter services were fantastic today.

Here are the girls in their Easter finery. I didn't get to see them all dressed up since I left the house at 5:45 am sang four services and got home at 1:30. Luke, as usual, got them gussied up and did their hair and oversaw the emptying of the Easter Baskets. We are going to have dinner with friends later.

We have had several inches of snow today - typical spring weather in Colorado.

Missing my boy today. Easter 2007.

Dream

I had a disturbing dream last night. Nathan was brought back to me, temporarily, and I was glad to see him but after we hugged he told me he was in pain and I had to give him some morphine and I was just so upset that he had been brought back to me only to suffer. It was nice to hold him on my lap though. He was wearing this outfit (minus the hat).

From July 2005

Erin

I was about to come to blog about some other things, which I will do in a nother post but I just read the sad, sad news about yet another beautiful child lost to Neuroblastoma. Erin had been battling a very long time. She relapsed a few months before Nathan and has spent many years in easy and fairly effective treatment. I came to "know" her mom online and got a feel for who Erin was (beautiful, bright, funny, loving) by following her blog. I am shocked by her death and just sickened and sad. I hate that there are still kids out there dying from cancer. Why can't we cure them? Please keep Erin's family in your thoughts and prayers.

March Photos

Late night with Depeche Mode

I was a huge fan of Depeche Mode in high school and early college. I slowly stopped listening to them, and Luke was never a fan so we never listened to them together.

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.

Round up

I have a few things to blog about and so I am just going to put it all in one post.

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.

It's that time again

Enough time has passed since my most recent freak out about Lauren's health that it is time for another one. As I have discussed before, I have a very hard time having any kind of perspective on her state of health. I go back and forth between underreacting and overracting when she is not feeling well.

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.

Not while they are eating

So one thing I didn't mention in my earlier post was that despite Excalibur being a more "family-friendly" Las Vegas Hotel, we could not get to the elevators for our room without passing (closely) an area with gaming tables and eating tables in front of a stage with scantily-clad women dancing suggestively.

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!

Road trip

We are in the middle of a spring break road trip. I am typing one-fingered on my iPod so this will be short! We are currently in Arizona and will be in Las Vegas next and then home. So far it has been a good trip. Photos and more details when we get back.

Remembering the best St Patrick's day ever

Click here

7 years 1 month 13 days

7 years 1 month 13 days

That is how long Nathan lived here on earth.

Today, Julia is 7 years 1 month 13 days.

Tomorrow, she is older than her older brother ever was.

This is just the first of many milestones to come where Julia overtakes her big brother.

She is already far taller and heavier than he ever was.

Time passes...too quickly

February Pictures

Diverse

I have been out of choir for a few weeks due mostly to the kid choir performances we were attending/helping with. I will be out for the next two Sundays as well so I was very glad to sing this morning, even though I had missed 2 weeks of rehearsals. Fortunately I knew the music.

The two main songs we sung today are completely different styles. It is so awesome to sing with a choir that can do that. Hopefully it helps to minister to all people because I know that some dislike the gospel and others don't care for the chamber choir style.

Have a listen:

Grateful

I have been feeling a lot of gratitude lately. I think some of the hurt is less intense and so I am able to see things more clearly.

Things I have noted lately that I am feeling grateful for:

My husband...The love of my life, father of my kids, my best friend. I am truly lucky to have him. I can't really put into words what he means to me. He is everything I ever wanted in a spouse, plus so many other things I never knew I wanted.

My House...especially when it is clean...We've made a few improvements in the last few years that have made it a more pleasant place to be. More than that, it is more than adequate to house my family. We have a low mortgage payment and a quiet cul-de-sac neighborhood. Sure, sometimes when I am in a newer, nicer, bigger house I have tinges of envy, but mostly I am just so grateful to be able to live in my house. I recently took care of some children for a day while their mom worked. They made comment after comment about how TINY my house and yard are! They really were amazed at my tiny house. I have been to their house and it is beautiful and big. So, I guess my 2400 sq ft house seems tiny to them. I kept my lips zipped but the truth is that we could have their big fancy house if I had a (paying) job. Which would they pick, their big house or their mom home with them full time? Which brings me to....

My Job, or lack of paying job anyway...I can stay home and raise my kids. I can go to the zoo on a beautiful winter Tuesday afternoon. I can spend time planning and cooking meals..not rushing to throw anything on the table. I can sit in the library on a Friday afternoon blogging while my three year old plays happily at a friend's house with her best friends. Of course I couldn't have this job without #1 on my list, my husband, who provides for us. It took a while for me to come to enjoy staying at home. I hated it for a while. I learned that in order to be happy as a stay-at-home mom I had to have scheduled time without my kids as well.

My children are of course something I am grateful for almost every moment of the day! There are many, many more things. It is just that these three things I have been feeling particularly grateful for lately.

Zoo

Lauren and I headed to the zoo today. It was in the mid-60s and sunny with no wind. Those of you not in Colorado might not realize how warm that feels - but the sun is so strong here. We were hot in short sleeves. It was glorious!







Check out the newborn (edited to add...5 days old!) orangutan nursing - look carefully in all the hair to see it.

Healing

I read the website of a cancer child. He recently relapsed. His mother says she was told by God that he will be healed and have a long and fruitful life. She is expecting healing any day now, despite much worsening symptoms and clinical proof of the advancing cancer.

I can't help but to wonder what happens to their faith if he is not healed. From reading the website I see they have very strong faith.

I don't know, it seems almost arrogant and convenient to me to assume God will cure HER child. Surely she knows how many children die of cancer. However, God came and spoke to her and told her hers would be saved?

I don't understand it and I am afraid for them if he dies.
I hope the healing happens though.

p.s. I just finished watching "Prince of Egypt" with the girls. Plenty of miracles there...

Schooling

So - many of you have already been through this. Some of you may be teachers. Hopefully you can give me some insight.

I can now see one reason to homeschool, but I will NEVER* do it!

I help out in Julia's first grade class once a week. Normally I help with reading. I have been absolutely shocked by the wide range of abilities in reading. There are a few kids who read at a high level - can read any word, any book pretty much. There are far more kids who still cannot read three letter sight words. Julia's teacher has a parent come in for reading most every day. I can't imagine if she didn't. There is no way she could have any kind of group lesson with the range of ability. I have felt comforted that there are 4 reading groups and parent help. Plus the excellent readers get pulled out twice a week for the talented and gifted program and work on reading comprehension.

Yesterday I was asked to do a pretest on telling time and recognizing/counting money. Once again, I was shocked by the difference in abilities. There were plenty of kids who did not know the names of the various coins, let alone their value. Then, there were about 4-5 kids who knew all the coins, could add them up and could tell all the times. One of them looked so surprised at the worksheet and asked me why one earth were they being tested on this, surely all the kids knew it! I had to tell him that actually, no, they don't all know it!

So, now I am trying to imagine this next math module. How do you teach the kids who don't know what a penny is and also teach the kids who can look at 6 quarters and tell you after a few seconds that they add up to $1.50?

*I am a believer in public schools, and like I said before I would never homeschool for many many reasons most of which have to do with the various personalities in my family. I am not against homeschooling, just not for me.

So - where does that leave Julia? She is in the top group of kids and I just don't know how she isn't bored out of her mind. On the other hand, she LOVES doing well and I am sure she is thrilled to have such easy work and do so well at it. Some challenges would be good for her though.

She actually doesn't have homework. She did for about three weeks and then it stopped and I don't know why. Maybe it is time for homework provided by me....I'm not sure where to start on that but I just don't know.

I am not the type who is worried about Julia being some great success in life. I don't care what kind of college she goes to. In fact, I don't care if she goes to college as long as she is pursuing a career that she can support herself with and that makes her happy.

However, while in school, I still want her to at least have the opportunity to achieve and learn to the level she is able. I just don't know.

I am hoping that as they go up in grades, perhaps the gulf narrows? I have no clue - maybe some of you can clue me in.

Perspective

Warning ranting about stuff that really isn't my business!

I still read blogs of neuroblastoma patients we knew from way back. Recently one child was inpatient from spiking a fever while her counts were low. Most hospitals require the counts climb back up before the patient is released, even if there are no more fevers. This results in time spent in-patient when the patient doesn't really feel sick. It's frustrating, no doubt. I've been there.

However, my tolerance is low now for listening to parents whine and whine about hospital stays. They have their child with them. In fact, they have lots of time to spend with the child. It isn't a life-threatening hospital stay. Yes, there are more fun thing they and their child could be doing. I wish I could shake them and say, "Yes, this really sucks, but you can't do anything about it, so why not try to make the best of your time with your child. Surely your attitude is rubbing off on them"

Nathan's 6 weeks in the hospital in the fall of 2006 sucked and I am sure I whined plenty. A big part of that was that not very far into the stay we knew that Nathan was terminal, looking at his last Christmas and trying to figure out how to get sprung to be all together as a family in Colorado for that last Christmas. Oh, and that I had a baby I was nursing but couldn't bring into his room, and a four year old sister who couldn't see him either. Luke and I only saw each other in passing. Somehow I think I deserved a little whining over that.

This particular family had no other young children at home. They were free to have all their family members visiting at the hospital. Make the best of it; time could be limited, do they really want to spend it whining and looking ahead instead of what is right in front of them?

I know I shouldn't judge - but I am judging. Feel free to ignore this rant. My perspective is skewed, even if I think it is right!

Nathan's Network

This year, once again, our friends are shaving their heads in honor of Nathan. St. Baldricks provides grants to researchers to help find a cure for cancer. This is no abstract idea - our good friend, Beth, is one such resarcher who recently received a grant from St. Baldricks for her study of medullablastoma. Her husband, Carlos, will be a first time shavee. Several team members will be shaving for the second or third time. Edited to add from the comments: James B, in Nathan's Netowrk is the 14 year old son of a good friend of ours who is shaving for the first time as well. Thanks James!

So, if you are able, please go visit Nathan's Network, and help support the race to find a cure for childhood cancer.

An oldie

I was looking at old photos to see some where Julia was the same age Lauren is now.  I came across this one.  This was Easter 2005.  So sweet!

Hospital Soap

I took the girls to their grief group this afternoon. Lauren is old enough to go now, too. On the way home I caught a whiff of my clean hands. I HATE hospital soap smell. It brings me back where I don't want to go. I wish the group did not have to be on the inpatient floor of Hospice. The kids room is just a converted hospital room right next to other rooms being used.

One person in the parent group that meets concurrently lost their spouse to cancer at a young age. This person remarried and now the new spouse, also young, may have cancer too. We talked about the fear - once you lose someone close to you - you know you could lose someone else too, so easily. We all agreed there should be some sort of exemption from further loss.

Anyway - I hate that smell.

It is well

My choir recently sang "It is Well With My Soul". Many of you know the story behind the hymn. Full details can be found here. The short version is that the man who wrote this hymn had many losses in his life. He wrote the hymn after all his children were lost at sea.

Here are the lyrics:

It Is Well With My Soul

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.

Refrain:
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

The first instinct is to say how wonderful it is that he could feel this way after such horrible loss. I have been thinking about it and I wonder if it wasn't written as more as a prayer. I wonder if he desperately wanted to feel this way and so wrote this hymn, rather than achieving this peace and then writing about it.

January Pictures

Mexico

We had a great trip. Luke read a really thick book and I read several small ones. We alternated between sitting on the beach or the pool. We spent some time in the pool bar. I drank too much one afternoon at the pool bar, in fact. We took walks down the beach and to some nearby shops. The sister resort we stayed at last time has a popcorn machine and so we had to walk over there a few times so I could get my fix. We ate a month's worth of guacamole and drank a lot of coffee and margaritas. We watched several old movies with subtitles.

The last time we went to Mexico we had a picture taken on the beach and so we thought we should do it again. We saw the photographer and grabbed him and then instead of just a picture he had us do a whole photo shoot. We finally cut him short after a few poses. We are not photoshoot material! Luke did not have any sunglasses on and the photographer made him wear his instead. Thus, the aviator glasses that Luke would not normally wear.








p.s. I posted earlier in the day also - so keep scrolling

One-Armed Woman

Please go and read this post by a mom who lost her son to neuroblastoma a few days before we lost Nathan.

She explains this life very well...

In Mexico

We are having a wonderful time in Mexico! Today we have eaten several times, drank several drinks, hung in the pool bar, had our picture taken on the beach (we´ll see how it turned out this evening) and Luke is sleeping on the beach while I log on. We´re hot and burnt and feeling good!

The party

So, today is Julia's birthday party. She insisted on having it at Chuck E Cheese because that is where Nathan had his seventh birthday party. Luke and I were more that a little reluctant to have it there, for the sake of our feelings. However, we decided to let her have it there. Her teacher, who was Nathan's teacher, is coming. She came to Nathan's party, under the circumstances, and I wouldn't guess she would normally attend a student's party. So, of course Julia wanted her at hers because she is trying to replicate Nathan's party. I have heard Julia trying to tell Lauren all the things they would do at the party and have had to stop and warn her that they may have changed things and the Chuck E Cheese people may not do the exact same activities that they did at Nathan's party. I just worry that she will not have a good party with all these expectations. She can try to replicate it but she can't have her brother there, which is what she really wants.

In around 49 days she will be older than Nathan ever was.

Bad parents

This is going to be one of those things Julia tells later in life to explain how much her parents didn't really love her!

Luke and I have been wanting to plan a trip away together. We are WAY overdue. We last spent a night alone without kids in 2004. Considering everything that has happened in our life since then we really need that time together.

We narrowed our time frame down to January as there are some obligations for Luke in February and then things get busy in March with some other things. We wanted a Thursday through Tuesday to maximize the weekend and flights. There were a few other factors that narrowed it down to Jan 22 - 27. We talked about it figured out where we were going (mexico) and checked with my parents on dates and then I booked it.

I walked down to the basement to get the confirmation off of the printer. I picked it up and looked at it. At that moment Jan 22 for the FIRST time registered as JULIA'S BIRTHDAY. Whoops! I don't know how I could have forgetten my child's birthday, but I did. Thank goodness we will at least see her on her birthday. She will get tons of attention from my parents.

We told her a few days ago and she seemed OK but a day or two later asked why did we HAVE to leave on her birthday. I kind of lamely explained to her but there is no real excuse.

I remember being so upset to be stuck in New York for her second birthday. She doesn't know that I missed that one. This is just another thing on the long list of things that the neglected middle child has put on her. She has basically the worst case of middle child. Her older sibling is dead, her younger sibling is a mama's girl and her mom "missed" all that time with her from ages 14 months through 6 that she sees her little sister getting.

We are not going to change it. She will be able to tell the story about how her parents left her and went to Mexico on her seventh birthday. I pray that is the worst thing she can say about her parents (but I highly doubt it will be). We probably need to start a therapy fund.

December pictures

and also dance pictures

Happy New Years

I'm not really happy with the year changing to 2009 and it sounds so long ago since 2007 when Nathan was alive.  I can't say he died last year anymore.  It feels like yesterday but as the time goes by I fear his loss will be marginalized for being "years ago".

We are hanging out in Illinois.  I have been sick since the 21st but amd functional again.  Luke is in the throes of it now.  Luckily I felt better before he felt crummy.

The girls are enjoying their grandparents and aunt (so am I, of course).  I've had my favorite foods and done a lot of lazing around in pajamas.

There is no way we will be up at midnight tonight but we are planning on some fun food and drinks and a few games this evening.  Luke's sister has wisely gone back up to Chicago to have fun with her friends who are not nearly so old and lame as we are!

School doesn't start back up until the 8th and so I will have to find ways to entertain the kids for the next few days when we get home.  They did great on the 15 hour drive here.  Hopefully the same will be said for the trip home.

Christmas without Nathan

I've been meaning to write about this. I will first share what Luke wrote on his blog

Nathan came up in conversation over dinner with friends a few weeks ago, just after Thanksgiving. Someone at the table asked how Susan and I were doing in this holiday season and the context was pretty clear. It occurs to me that perhaps others are wondering the same thing.

Thankfully there is a big difference between last year and this year. I could have skipped the holidays altogether last year. We traveled and were with loved ones, but the times were mostly painful and I did a lot of going through the motions. I can't really explain what is different this year. I could say it was easier, but that wouldn't be right. Holidays or not, there are moments where the loss is every bit as painful as it has ever been. And, good or bad, the holidays are times to focus on family and reflect on these things.

Thanksgiving was great. But it wasn't great like Thanksgivings past. I thoroughly enjoyed extended visits with Susan's family and Thanksgiving day was great fun. And I'm looking forward to Christmas and really expecting it to be a happy time with the kids and family.

It isn't the same anymore though. I don't think it ever will be. I don't feel complete and I don't think that any of us feel like our family feels complete. I can't think of the holidays as "easier" or "better" this year, but I have been looking forward to them more and so far I have been able to enjoy them and I think that will hold true. For me, the holidays are going well, but they are not the same and they never will be. That sentiment isn't me being still caught up in grief. Our lives are forever changed and shaped by this experience and the filter through which I view my life and these precious holidays will always include Nathan.

I appreciate the friend who asked. It was loving and considerate and it acknowledged that Nathan is so obviously always in hour hearts and on our minds. I can't help but think, and fear, that these inquiries will dwindle over the years over the assumption that we "have moved on" or "had closure" or "come to terms" or because new friends we meet and become close with won't have been in our lives when Nathan was physically with us. So next year, and the year after (and not necessarily around the holidays), let me know that Nathan has been in your thoughts. It will make me feel loved and it will warm my heart to know that he is carried in the hearts of others as well as my own. If you ask in person, I may or may not tear up or even cry. Don't feel like you are responsible for surfacing the pain. It is always at the surface. And sometimes it is better to share those tears with a friend than it is to shed them alone.

Luckily for Luke and I, we feel very similarly about many things and this is one of them. I have to say that the very last part about sharing the tears...well, maybe not so much for me, as many of you know. Something you should know is this - I cry about Nathan a little every single day, privately. Someone shared a thought with me today "I plan on grieving for my child as long as he's dead" . That is so true. When I am 60 I will be grieving for Nathan at holidays. Who knows what it will look like.

Things are not as raw this year. I was able to put a little picture of Nathan on the tree and photograph it with the girls. I was able to hang his stocking and the thought of it empty Christmas morning is hard, but I know I can bear it. I think that is the big difference to me this year, my ability to bear the pain has strengthened. The pain is not as raw and I can face it much better.

Dance pictures

The girls had their winter ballet recital on Saturday.  I was too sick to attend but made it to the Friday dress rehearsal and took some pictures.  They both had a great time and there isn't much cuter than a bunch of little girls dressed up and dancing!  I can't say I really like Julia's orange ballet outfit though.....she's cute anyway.

Christmas Card

Some of you lucky folks got one of these in the mail...For those of you whose address I do not have - here is our Christmas Card.  If you click on it to make it big - you will be able to find Nathan too.

Thoughts and a picture

I removed my status report post. Why? Well, I want to share my feelings but there is a real or imagined side-effect of having people's pity. Some things I am bad at: sharing my feelings, asking for help/favors from people and having the feeling that someone's motivations towards me are driven by pity. This has nothing to do with any comments posted, so those of you that did post, don't worry. It is more of an internal bad feeling about it.

I put a new picture on Nathan's caringbridge site yesterday of his playing in the snow in December 2006. I am really liking it and so I will share it here.

Lunch for Life

It is that time of year again, when the fundraiser Lunch for Life is in full swing. We may not be able to save Nathan, but a lot of his friends are still battling and I would love to help find a cure for them and all the kids yet to be diagnosed.

Here is some information:

********************************************************************************************************

Lunch for Life® is about helping children who have been diagnosed with neuroblastoma, a deadly form of cancer that strikes thousands of infants and toddlers each year.

This fundraising program is a simple but powerful solution: We ask people to donate one day’s lunch money to the Children’s Neuroblastoma Cancer Foundation (CNCF), a public charity dedicated to curing this cancer.

The cost of one lunch, if enough people contribute, will help save lives, fund research for a cure and provide support for families. Please donate your lunch money to the Children's Neuroblastoma Cancer Foundation and help us eradicate this disease.

Here is an explanation of how your money is used:

WHERE DOES THE MONEY GO?

• ALL funds raised through "Lunch for Life®" go directly to support neuroblastoma research and initiatives.
• Funds are dispersed through a grant review process and funding decisions are based on the direction of the CNCF’s Medical Advisory Board. (This board is an independent and organizationally diverse group of neuroblastoma specialists and researchers committed to hastening a cure.)
• Lunch for Life® is entirely about removing this horrible disease from the face of this earth. It is about speeding up the process.
• Lunch for Life® is about saving children's lives.

It is simple. We are an organized group of families with children, grandchildren, friends, and relatives afflicted by cancer. Our only goal is to erradicate this disease. Our children may or may not benefit from this research. A cure may not come in time for many of our little warriors. But we can keep other families from walking in our shoes and we can keep other children from entering into the world of neuroblastoma. It is for these reasons that we are committed to finding the cure. We have no desire to fund expensive marketing campaigns. We are committed to finding a cure. It is about the children.

Our goal to hasten the search for a cure does not only include fundraising but it is also about speeding the process of getting research dollars into the hands of those that need it the most. For this reason, the CNCF developed a grant review process in order to direct the funds into the most promising areas of research. As parents we do not always know what is in the best interest of neuroblastoma research. To correct this problem we created a medical board of the top researchers in the country to help us make better decisions regarding funding. The medical board operates under the following directive:

Make funding decisions that are most likely to hasten research into the cure for neuroblastoma.

It is this design that guarantees your lunch money will be put to its best use.

************************************************************************************************************

I have personally met the founder of CNCF and the creator of Lunch for Life and they are incredibly dedicated people.

Nathan has a giving tree on Lunch for Life. Every donation fills his tree with ornaments ( and gives our family a chance to win a trip to Disney World) .

A special code will give Nathan extra ornaments. That code is 32109.

Link to Nathan's tree

Thanks in advance to all that give. I know we all have our charities we give to and in times like these we try to stick to those. So, no pressure here, just an opportunity for anyone who wants it!

Status report

I have a post churning in my mind about this Christmas Season and grief.  I haven't found the energy to write it yet.  I have been very busy with our Choir concert, which was yesterday, and remain busy in preparation for Christmas eve services for both my choir and the kids service which Julia is in.

I am not sleeping well - night terrors are at their height at the moment.  I am feeling anxious, worthless, fat, useless, all those things... and more.  Not that you could see much of that if you ran into me out somewhere.  I'm functioning.  I have always been pretty good at burying everything going on with me so that even those who love me can't see it.

Wintersong

I have been enjoying the album "Wintersong" by Sarah McLachlan. I hadn't listened to every song yet but today I listened to the title track and it is beautiful but it made me cry.





Wintersong

Sarah McLachlan The lake is frozen over
The trees are white with snow
And all around
Reminders of you
Are everywhere I go

It's late and morning's in no hurry
But sleep won't set me free
I lie awake and try to recall
How your body felt beside me
When silence gets too hard to handle
And the night too long

And this is how I see you
In the snow on Christmas morning
Love and happiness surround you
As you throw your arms up to the sky
I keep this moment by and by

Oh I miss you now, my love
Merry Christmas, merry Christmas,
Merry Christmas, my love

Sense of joy fills the air
And I daydream and I stare
Up at the tree and I see
Your star up there

And this is how I see you
In the snow on Christmas morning
Love and happiness surround you
As you throw your arms up to the sky
I keep this moment by and by

Thankful

The other night I went into Lauren's room before bed to check on her. She was in bed with several toys surrounding her and also the pictured craft that I had somehow missed coming out of her backpack. It melted my heart.



p.s. Last night I hit her with the door trying to check on her. She had taken her lamb and blanket and fallen asleep next to her door.

p.s.s another new post follows this one

Latest un-nap

Potty-trained!

I have been forgetting to mention that Lauren is potty-trained...at night too!

I had tried to potty train her a few weeks earlier and it was a disaster. However, that half of a day got her thinking about it and becoming aware and she started to use the toilet at times but was still in a pull-up. She asked to wear undies to school and I let her and she had two accidents. So - a few days later when we had several days at home we tried the panties again and she had success and has been pretty much dry ever since. She is self-sufficient right from the get-go. Using potty by herself which is great. She has been asking to wear undies at night and so we took the leap and that is just fine too. She gets up in the night and uses the toilet by herself if she needs to.

I never potty-trained the other two and so it was a new experience and I feel good about it.

NO MORE DIAPERS!!!!

Napping

So Lauren has given up taking naps. However, she still needs naps. This results in her falling asleep at odd times and places. Yesterday she fell asleep on the couch watching a movie and I had talked to her 2 minutes prior and when I next said something to her she was out! I was on my way out the door to get Julia and take her to ballet but one of the perks of Luke working from home is that I could just leave her sleeping!

The next picture is during Thanksgiving week. She was watching us all play the Wii but it was too boring I guess. My brother is playing guitar hero next to her while she sleeps.

November pics

If you get to the end - tell me how fake (or not) the photoshopped family picture looks.