Almost Perfect Labor Day

We have had a busy weekend, brought to a head yesterday with some extended family visiting. With the cleaning, cooking and entertaining done, we relaxed for a while this morning and headed out for a picnic and hike. We ended up at Cheesman Canyon, which is known for fly-fishing. We enjoyed wading in the ice-cold mountain river and eating lunch to the sound of rushing water. Julia and I even disturbed a water snake. I let out a little scream when I saw it - I was not expecting a snake! We got out of its way and continued on. We also saw some lizards and nice wildflowers as well as the devastation left behind form the Hayman Fire a few years ago.

We did some very steep hiking and bit of rock scrambling and both girls did great! We didn't even carry Lauren once. We were caught in the holiday weekend traffic in Woodland Park but stopped and got drinks half-price at Sonic.

We feel so lucky to live in a city that it is an easy half-day trip to and from such a beautiful place.

p.s. I assume you know why it was only almost perfect

My little man

I love this picture of Nathan at my brother's wedding. He was always a little man in a boy's body.

Here's a picture of the 4.5 of us (pregnant with Lauren!)

Dimples

Not the cute kind. The kind that Lauren has on her lower back at her hips. They look just like Nathan's. His were scarred many times over from bone marrow aspirations/biopsies. I see her lower back and in my mind's eye I see those scars.

Not pleasant.

Almost a Christmas-baby

Driving to Choir on Thursday I went a different way so I could pick up a friend. Google maps led me onto a street whose name I did not recognize. However, when I got there I remembered doing a u-turn on this street 7 years ago.

It was Christmas Eve 2001 and my parents were staying with us celebrating. I was 8 months pregnant with Julia, who was due on January 29. In the middle of the day, I started to feel queasy. Not too long afterwards I started throwing up. It was a classic stomach flu and I could keep nothing down, not even the smallest sip of water. Meanwhile my mom carried on with Christmas Eve hors d'ouerves and the big dinner.

I came downstairs after a while to try to join them at the table. One by one, everyone else vacated the table. Luke was not sick, but not feeling too good. Meanwhile I was terribly dehydrated and feeling some contractions. I called the doctor and they told me to go to Labor and Delivery. I had stopped throwing up non-stop at this point and as we were heading to the car, Luke was looking very green. He grabbed a trashcan to bring with him and there was no choice but for me to drive, even though I was sick and possibly in labor. So I drove down Union Avenue, turning into the mystery street for Luke to throw up and dump out the can.

I got checked into L&D and was having contractions and still throwing up occasionally. Luke was very sick as well. The nurses took pity on him and were trying to care for him too. The easy things to stop my contractions didn't work and so they started harder stuff. They told me that next door there was a woman due at the same time whose doctor was just letting her have her baby, but they were trying to stop mine from coming. This was just fine with me as the thought of giving birth while battling the stomach flu was less that appealing. They finally stopped my contractions but then kept me in the hospital for a few more days.

We celebrated Christmas when I got out. Luckily Nathan was only 18 months old, so he was none the wiser that Christmas Day had passed with his parents gone and his grandparents sick and trying to care for him. He wasn't sick. He had thrown up a few nights before and we didn't know why. Now we did!

Anyway - Luke and I laugh about the Christmas that wasn't and me driving myself to the hospital that night.

In the end, I had Julia on January 22, 2oo2 and it was the easiest most beautiful birth! (yes I thought women were lying when they said that because Nathan's birth was terrible but Julia's really was so peaceful and easy but that's a future post).

Some pictures:

August 2009 Pictures

Owen

Yet another beautiful child has passed away from Neuroblastoma.

We got to know Owen and his mom Karin when we were in New York for 3 months in the fall of 2006. Owen was a silly sweet boy and I thoroughly enjoyed spending time with him. His mom, Karin, was a lifesaver for me. She was easy to talk with, she was practical and yet full of hope all at the same time.

I ache so much for Karin and her husband Randy and his sister Shannon.

Dream last night

As you know, I like to record my dreams of Nathan in this blog so I can remember them later.

Last night's dream was great - I was dreaming it right before I woke up. Nathan had come back from the dead. He was feeling great and at our house. He was playing with his sisters and also playing some computer games. I was rummaging around trying to find some of his clothes for him. We knew it was a miracle that he was with us but unlike most dreams where we know he is leaving again, in this dream, we decided it was a miracle he was back so why couldn't there be a miracle that kept him with us. So we were very upbeat and just enjoying having him with us. At one point we were walking along a path, the five of us, and it felt so good to have the whole family together.

I miss that little boy!

Jump

I took Lauren on a walk on the path behind our cul de sac the other day. We have had so much rain this year that the wild sunflowers blanket the hillside.

On the way down she decided to jump over the cracks in the sidewalk. Just thought I'd share the pictures.

Second Grade

We took Julia to meet her second grade teacher and see her classroom last night. Something Nathan never got to do. I was fine until I was in the car alone driving to choir rehearsal afterwards. It just sucks.

July 2009 Pictures

Telling it how it is

So today I took the girls for a haircut.

One of the stylists says to me "so do you have any more children?"

See, these are the kinds of questions you get asked everyday. As I have said before, everyday life is full of painful reminders. It comes up ALL the TIME when you have other children and people are making small talk. I am getting used to these things by now and have come to find what is right for me.

So my answer, "yes, I have a son but he passed away"

I am never, not going to mention Nathan when I am asked such a direct question. I just can't do it. I am sorry if some people are uncomfortable with it, but life itself, can be quite uncomfortable.

Most of the time, people are fine. I have to hear the "awws" and then they usually ask a few questions.

p.s. sorry for the lack of posts, we have been on vacation for two weeks so I will probably post a bunch in the next few days. Scroll down for a post from earlier today.

Memorial

I have finally bitten the bullet and ordered a statue in memory of Nathan. His school has a garden area and we are going to put it in there. In addition we are giving some funds for a tree and some landscaping to be done around it. I have been working on this for many months but have taken it slowly. I could have ordered the bench back in April but it has taken this long to just feel ready to do it.

This is the bench. There will also be a plaque on it. It is a stock statue - not custom. I just loved the boy and the girl. It reminds me of Nathan and Julia. Nathan loved school and liked to read and I really hope the kids like looking at it and touching it. The statue can have the kids off to one side which I originally wanted so a child could sit with them if they wanted. The people at the statue company really warned against doing so because it is not meant for sitting really and it could add to the wear and tear so I ordered it in the center. I have until Monday afternoon to change my mind. Let me know your thoughts on this because I am torn.





We aren't planning a ceremony or anything. That just isn't our thing. It will arrive an about a month.

If you are local, the garden is kept locked when not in use by students. I am going to beg for a key and then if you want to see it down the line I'd love to show you. I will post pictures when it happens of course.

Two Years

I have no eloquent words or interesting insights into my world today.

I choose not to give today too much weight. I certainly don't miss him any more today than I did yesterday. Yet, I cannot deny that I start on my third year of living without Nathan today.



We are currently in Illinois at my in-laws house. Tomorrow Luke and I will go up to Chicago without kids for two nights. How I wish Nathan was here with us.

Rachel

Sometime in late 1999 I joined an online pregnancy board of moms due in June 2000. A good number of us have stayed in touch over the years. They have always been supportive of all that I have gone through with Nathan. A few years ago one of them (Kat) even moved to Colorado Springs for a while so I got to know her well "in real life" and then she had to move away.

Kat's Junebug Rachel is such a sweetie. Kat and family came to visit us once in the hospital and Rachel climbed right on the bed to play with Nathan. She didn't even seem to notice the bald head and IVs, or else it didn't seem to bother her. She was there to play, and they did.

Around the time that they moved away again they started to have issues with Rachel. It was a wide variety of problems to unspecific to pinpoint.

Very recently Rachel lost a good portion of her vision. This led to months of testing which has led to a devastating diagnosis, Batten Disease. It is a fatal degenerative disorder of the nervous system.

I am so horrified that this has happened to Rachel and to Kat and her family. I thought I had the market cornered on kids with terminal illnesses from our small group of women. For some reason I still feel that Nathan's cancer and death should exempt his peers from similar fates. I know the world doesn't work like that but somehow it seems like it should.

Kat's main goal is to treat Rachel's symptoms the best she can and to keep Rachel from knowing her fate. Some may not agree, but I agree 100% on that. Rachel should be able to have the happiest, fullest, life she can live with the hand she has been dealt. Her job is to be a kid.

The road ahead is long and scary for Kat and her family. Please send some prayers her way.

A gift

After a very difficult day yesterday missing Nathan I was blessed by a long dream visit by Nathan. It was so good to see him and he was feeling very well in this dream.

This time of year is just so difficult. It is something that has just hit me, not something I am actively thinking about - I feel like I have little control over the sadness.

Here's a picture - just because

July 2006

From July 2006

Missy and Ryan

I have failed to update on my previous post on Missy and Ryan.

It is such a harsh world - such a difficult reality.

Missy died on July 8 and Ryan died on July 10.

I am beyond sad for Les, Will and Heidi. Their losses are so great. I can not imagine what Luke and the girls would be going through if they also lost me two years ago.

I never met Missy and Ryan in person, but I hope to one day.


I feel a bit of a jerk for not updating as soon as I found out. My excuses above make it even more pathetic. I guess it gives some insight into the selfishness me as grieving person.

This is a very hard time of year for me. I spend a bunch of time trying not to think back to two years ago. Lately there have been hard things I have wanted to post about, but can not bring myself to do so. There is also a very worrisome thing going on that I am not at liberty to discuss right now.

blog lull

I know my blog has been slow and dull lately.  I guess I am not in the mode of posting much of what is going on in my life.  I am not sure why.  If you follow my twitter/facebook updates in my sidebar you can kind of see what I've been up to.

I am going to try to summarize a bit.

School ended May twenty-something.  Shortly thereafter my mother-in-law came out for a long weekend visit which we all really enjoyed.  We will be visiting them in Illinois later this summer.  Right after she left my dear friend Lisa and her family stopped in for a visit on the way to Illinois.  It was wonderful to have them all with us and get to know her kids better.  She lived here when we moved here but moved away 6+ years ago.  I've known her since high school and I consider her to be my best friend in the world even though we rarely see each other and don't even talk too often.  It is one of those soul-connection things.

We had a week at home and then I sent the girls to vacation bible school in the mornings for a week.  In between we have been swimming and just hanging out.

We just returned from a long trip to South Carolina, via North Carolina.  The girls and I flew to NC and spent the night at Tammy's house (Julia's former babysitter/substitute mother/all around lifesaver).  I left Julia there and drove with Lauren to Hilton Head Island, to visit my parents.  Lauren and my mom and I did the beach and pool thing and I just enjoyed visiting with my parents and hanging around the house.  On Friday morning, Luke joined us and on Saturday (the fourth) Julia and Brady (Tammy's daughter) were delivered to us after a joint lunch at the Salty Dog Cafe.

We went for an afternoon swim and then walked to Harbor Town to sit on the 18th fairway of the golf course and watch fireworks.  We had fun watching all the crabs at the shore while we waited for the fireworks to start (the 18th hole is right on the sound).  The fireworks were spectacular!

We spent the next several days going to the beach and pool and relaxing whenever we weren't swimming!

We headed back to NC to deliver Brady and then flew back home on Friday.

That brings me up to date to yesterday when we attended a choir breakfast picnic (where Lauren fell into the pond) and had guest for dinner last night.

Today is Luke's birthday and we have been to church and will be having friends for dinner later.  I  need to make Luke's cake (chocolate/chocolate) and do some cleaning and laundry.  Luke is playing Tiger Woods 2010 which I got him for father's day (which by the way we semi-ignored as it isn't the easiest day around here).

See the next post for some pictures of the June events.

June 2009 Pictures

What I won't be doing this weekend

is watching the new movie, My Sister's Keeper.  I read the book and I can't tell you how much I hated it.  It dramatized and exaggerated the decisions and emotions that childhood cancer families go through.  The movie reviews I have read say that people are taken into the real, ugly, world of childhood cancer.   I highly doubt that.  There is a scene in the previews (which I have been captive in a theater and seen) where the father is taking the girl to the beach or something and her mother thinks it is unsafe and yells that he is going to kill her.  This all in front of the two children waiting in the car.

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.

Sat. night dream

Once again - blogging a dream mainly for myself to remember.

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.

Heartbreaking

I'm checking in on Ryan, who is battling relapsed Neuroblastoma, while his wonderful mom, Missy, is battling relapsed breast cancer.

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.

Should be nine

So - tomorrow should be Nathan's ninth birthday.

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.

May pictures

Past Life

I just went into the crawl space to rummage for a document and came across some things from college.

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.

 

I went on to have more career achievements before I stopped working to be a stay at home mom.  It seems at times I can't really remember that person.  I don't know what the future holds but it is nice to remember I once was really good at something.  If I were graded on my stay at home motherhood abilities I think I would get a C or so.  I can do it fine, but it doesn't just click with my like accounting did.

Zoo fun

I keep meaning to post about our trip to the zoo on Memorial Day. We went right when it opened and therefore got to see some very awake and active animals in light crowds. Some friends of ours were there and we got to chat with them on the playground a bit too. Culvers for lunch followed. It was a lot of 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.

How Many?

I was asked at choir on Sunday "So, how many kids do you have now?"  I like this man but I wasn't going to play his game so I said three and he asked me the ages and so I told Julia and Lauren and then brought up Nathan, which he already knew, and he made some comment about having the two kids now.  Like I said, I knew that is where he was going with it the whole time but I just don't subscribe to that policy.  I have three children.  Only two of them are here with me, but I will always have three kids.  End of discussion!

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. 

Dream

This entry is for me - I like to write down my dreams of Nathan so I can remember them later.

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.

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

The girls had their dance recital on Saturday. It was very cute of course.

I have a video of the dress rehearsal (which is why there is talking and people wandering around during it) and some pictures.

Enjoy!

Kids Church Choir Concert

Luke and I have been helping with the Kindergarten choir while our girls are both in different choirs. At times, keeping up with three choirs is a bit much but it was very rewarding. Here are some pictures and video from last night's concert.

Weekend

Despite not being overly pleased about the idea of Mother's Day we made it a good weekend.

On Saturday, Luke to Julia to a class about communion at the church and Lauren and I hung out.  When they got back we ate lunch and drove up to Denver and went to the Denver Museum of Nature and Science.  The girls LOVED it and Luke and I had never been there and we had a great time goiong through the exhibits.  We topped off the visit with a volcano movie at the IMAX.  After the museum we drove over the the 16th street mall (a large pedestrian walking mall downtown) and walked and had dinner outside at the Cheesecake factory and then drove home.  It was a wonderful day of doing something different as a family.

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.

Mother's Day Tea

Well - I made it through the dreaded Mother's Day Tea in Julia's classroom. This was an event I attended with Nathan and it was a difficult day back then because I knew it was the last school function I would ever attend with him. Read my post here.  Here is a picture.  I will get one of Julia and I from todya at some point.

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,

New Skin

I decided to change up my blog a bit. I'm not yet sold on some of the font colors or the quote being in my header...so it still may change some more. Luke thinks I have been working on it for five days - however I have been mostly learning the html and architecture behind the scenes of blogger for those (parts of) five days.

April 2009 Pictures

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.