Busy

It doesn't seem like almost 10 days since I last wrote. We have been busy with the ballet recital, Lauren's preschool program, dentist appoints, Christmas shopping and also a trip to DC. On Sunday Luke and I left the girls with a friend and headed to DC for my Uncle's funeral. By the grace of God our flight went off without a hitch despite the monster snowstorm in DC the day before. We arrived to a very snowy DC with the Metro closed on outside tracks. We had been plannign on taking it to our hotel but managed to get a cab fairly easily despite all the snow. We checked into our hotel and hopped on the Metro (Rosslyn, which was across the street, albeit very snowy street) and went into Ballston to eat dinner at our favorite mexican restaurant in DC. It was kind of weird to feel the ghost of Susan past there. A 23 year old in a business suit with nothing but good things in her life so far.

The government was closed on Monday but, thank goodness, the funeral was held anyway. The cemetery was closed and so we just attended the service in the chapel outside the cemetery gates and the soldiers and riderless horse did their things right outside. A lot of people did not make it in and we were soe thankful we did

Wintersong

I love this song - it captures the bittersweetness of this season - without my beautiful boy.

November 2009 Pictures

Guess I forgot to do these!

Little Man

Nathan was a serious kid - not that he was not silly but that he really didn't appreciate it when others did silly things to interact with him just because he was a kid.  He never appreciated one of the oncologists, who, used to an average 2 year old, would say "Is there a tiger in your tummy?" when listening to Nathan's chest with the stethoscope.  Even at that age Nathan would give him a LOOK and say "no".

He also did not want to be forced to do silly things.  There is proof of this on our tree in the form of an ornament he made in preschool.  He was NOT pleased to be forced to put on reindeer ears and smile for the camera.  Check out his expression.  I LOVE this ornament because it is a little piece of his personality captured forever.

Tree

UPDATED BELOW
****************

It is so often the little things, the things that are normal stuff for everyone else that get to me.

Once again this year it is the preschool family tree.  I tried not sending it in today and they told Lauren to make sure to bring it on Wed.  Last year they had one in the welcome packet that I just ignored.  Yes, I know, I am not being a good mom.  Well, that's reality sometimes.

I will, however, suck it up and fill this one out for Wednesday since they said something to her.  I heard through the grapevine they should attach a family photo but I have not heard that officially and so that may not happen.  See, I just have to list brother and sisters - that is easy enough to do.  If I attach a picture I either attach one with all three kids when Lauren is only a year old or I attach one of her at four years old missing a sibling.  I considered attaching a recent family photo and also one of her and Nathan together.  Either way - I just HATE doing this seemingly simple happy little preschool project.  It is one of those that happens year after year in school though.  I think about other kids whose families are not the ideal either.  Does it cause them pain or embarrasment?  Do kids with divorced parents send in two family photos?

I'm not saying they shouldn't do it but I bet it hasn't occurred to a lot of these teachers the potential minefields.  Lauren's includes "Interesting Story" as a category.  I have many sarcastic thoughts on that one that I will keep to myself and I will be curious what her interesting story is.  Nathan is probably very much like a mystical being to her, so I think to her all that I am having angst about means nothing.

That makes me relieved and sad at the same time.

******

So - we did it I gave her options of pictures and she came up with her own idea of our recent family picture from Thanksgiving and also a picture of her, Julia and Nathan.  I brought in the paper and gave it to one of the teachers.  I asked her if the kids would be discussing their papers.  She said yes so I felt like I should warn her so I said that we had two pictures and that Lauren's brother died and so not to be surprised when she mentions that.  She mumbled something about overhearing Lauren saying something like that before but it was clear to me that she didn't think it was actually true.  She kind of gave me a lost look and I mumbled something about how much I hate doing these projects and gave a nervous laugh and high-tailed it out of there.  sigh.

Family

minus one

Happy Thanksgiving!

Navbar hint

I thought I'd share this because I only found out by subscribing to the blogger blog.  They have updated the navbar (bar at the top of blogger blogs) choices.  You can now have transparent navbars (see what I mean by looking at mine).  Just go into settings and layout and click edit on the navbar.  Makes blogs much prettier. As I was browsing around today I saw a fair number of blogs that could benefit from this...

p.s. I posted earlier today today too so scroll down..

Four

Lauren turned four yesterday. How can that be?

  

 

 

October 2009 Pictures

Do Re Mi

Luke and I help out in the Kindergarten choir at church.  We mostly enjoy it (there always seems to be that ONE kid you almost have to sit on - this semester it is a child whose name is unusual but I remember it quite easily because it rhymes with "heathen") and it is a good way to give back to the church and have fun with kids that aren't ours.

The director, who is in the sanctuary choir with me, has had me playing the glockenspiel with them the last few weeks on some of their songs.  I am just alternating back and forth between two notes on the beat.  I think it is supposed to be helpful to the kids.  It is very simple.

The kids are singing in a church service on Sunday and to my horror I find I am to kneel in front of them with the glockenspiel playing my two notes while they sing.  I tried to decline but I could not get out of it.  My fellow choir members will get a nice view of me doing this and I am really hoping the cameras for the live stream on the internet will keep its lens trained on the kids and not me.

One small mercy though...when we were rehearsing in the sanctuary tonight and the director was busy with the kids the A/V guy came up to me and asked if I would need the glockenspiel to be mic'ed.  I said something to the extent of "please, no!".  Phew!

Bible Study

I know I have readers who are involved with church and bible study and I have a question for you. 

How do you evaluate whether a bible study is a productive/positive experience? 

I am really struggling with enjoying or even at times tolerating bible study currently.  The topic is fine.  It is a manuscript style study of Mark.  It relies heavily on small group discussion, however.  I feel like I am not in the right place right now or something to be able to take it in and participate.  I have had very little bible study experience and I don't feel like I have very much to contribute.  Also, I find that I have been having a harder time with grief lately, which just makes me tend to clam up in general.  It doesn't help that some of the group knows about Nathan and some does not and I feel like it is this big thing that effects how I feel about things but it is not something I can throw out there.  We do very little personal sharing and so somehow it seems hard to study the bible without applying it to your personal life but that seems to be what we do.  We dissect the text but it doesn't seem like we apply it much to our lives.

I am really considering dropping it.  In fact the only reasons I am reluctant are that 1) there is someone in my group I really want to get to know better and 2) Lauren gets to spend time with one of her best friends while I am there.

This all seems to be about ME and that is not the point of bible study, I know.  If I stop this one I will look for something else, somewhere else.  Someone please tell me if I am being selfish and childish?

Halloween 2009

The first one was taken before school on Friday - thus all the snow!

 

 

Missing my boy today

DC

So - I just bought two tickets to Washington DC. I lived in the area for several years after college and that is where Luke and I met. I have been back once since, when I was pregnant with Nathan.

We are going back for my Uncle's funeral. It makes me realize that we really need to go back for reasons of just visiting the town and the poeple there we love. We fell in love and got married there. I hope we are able to at least drive by our old apartment and wedding chapel! We will only be there for one full day and we don't even know where our children will be while we are gone yet but it is really important for us to go and so we just booked the trip and will figure it all out. It is not until December so we have time. My Uncle will be buried with full honors (not the right terms, I know) at Arlington National Cemetery, thus the delay.

Here is a picture of a young and permed me at the Lincoln Memorial in 1994 (before I met Luke)

Worst Fear

So - Luke and I went to an awesome concert last Wednesday. We were 3rd row center for Lyle Lovett and John Hiatt. It was just the two men on stage with their guitars. There was no set-list and it was really casual. It was like sitting on my sofa watching them play. The seats were incredible.

Anyway - during the friendly banter Lyle Lovett asked John Hiatt something about what has he been scared most about recently. John Hiatt couldn't think of anything really and mentioned that he is always scared for his kids. He said the youngest is 21 and they are scattered about but he still worries about something happening to them.

I guess it is probably true that for those who have children, a great number of them have the same "worst fear". That something will happen to harm or kill their child. It struck me that I was sitting there enjoying this concert and that this man's worst fear had happened to me. What is my worst fear? Something happening to another one of my children.

Last week also contained a very terrible event(s). The viewing and funeral of a 17 year old boy who died from cancer. I knew his mom from a childhood cancer support group. I went with my friend and fellow mom-of-child-who-died-from-cancer. The visitation was really hard for me. I have never been to a visitation and so the viewing of the body is something I could really have done without. I don't need to ever see another dead child as long as I live. My own was plenty. Then, his little sister wailed, cried and called out his name and was lovingly escorted from the church and returned again to wail and cry some more. It brought back horrible memories and was just incredibly painful to hear on top of that.

The funeral was also very sad, but at least I got to know a bit about this boy from those who loved him. His mother wailed and cried as she processed in. It is so different from the Presbyterian funerals I have attended. I think this church/culture/community did it right. Crying and wailing from those who loved this boy is the right thing to do, yet it is not acceptable in other churches/cultures/communities. We were all so stoic at Nathan's funeral (except for Julia, who didn't "know" and reacted the way she felt inside).

Anyway - a long post. I wish I could have made it into about 3 separate posts but I could tell it was now or never for me to blog this and so I just put it all together. Thanks for reading if you made it this far!

September 2009 Pictures

Uncle Bill

My blog silence has been due to my inability to write about my uncle Bill, who died on September 27. I wrote just a little bit about him here. The problem is, I feel like I can't even begin to describe him and to properly convey what a wonderful and unique man he was. Luke and I agree that there is no way to adequately describe Bill and what made Bill such a wonderful person to know. Bill's zest for life is unlike any other I have ever witnessed. He will be greatly missed.

weekend

I'm just going to hit upon a few things in one post.

1. Julia's feet.

Julia has been just impossible to buy shoes for for several years. She things everything is uncomfortable and everything slips at the heel. Lately I have been noticing her ankles seem turned in. We made a last ditch effort to buy her some shoes last weekend at the Stride Rite factory outlet with no success. So - today we went downtown to the local Stride Rite store. It is a full-service kids shoe store. They took one look at her and said that she had "somewordIcan'tremember" which meant that she turns in her ankles. So we decided we should also buy her some new tennis shoes because they were going to put inserts in to help her walking. About an hour and a half later and $144 less we left with new tennis shoes and brown Mary-Janes with inserts glued into them. They said she has "princess feet" and said her heels are especially narrow. I hope these shoes help her and last for quite a while as well!

2. Food

Bonus thing about being in the north downtown area is one of my favorite lunch restaurants is there - Paninos. I got hooked on their spaghetti pie panini when I worked downtown. We had lunch there. Yum!

3. Cemetary

After lunch we went to the cemetary. As I wrote last week, the girls had been asking to go there having not been there before (Lauren has but doesn't remember). We decided it was a beautiful fall day and a good day to go. Side note that it is in the 80s today - It snowed on Wednesday. So - we showed the girls Nathan's creche in the columbarium. Click here and here and for my posts about the columbarium and some pictures. Anyway - they got to see it and trace his name with their fingers. We walked around some of the gravestones. I mentioned that there is an area in the cemetery with children's graves and Lauren really wanted to see that so we drove over there and saw my friend Sherry's daughter's grave. Nevaeh also died of neuroblastoma. It was really sad seeing all these graves of little children and for me it reinforced several of the reasons why we didn't bury Nathan. We would like to install a bench near the columbarium and are going to look into whether that would even be possible. After we left, and during some, Julia kept saying over and over again, in a cheery voice, "Nathan's not really here, he's in heaven". She kept saying it so much that we finally asked her to stop saying it. You could tell she was really trying to convince herself it was true.

4. How Great Thou Art

If you recall, in my last entry, I mentioned the hymn last Sunday was "How Great Thou Art" and talked about how Julia wailed through that as it was sung as a solo at Nathan's service and how hard it is for me to hear it. In fact, when I sat through the last part of the second service with Luke last Sunday we bolted out as the hymn started up since it was the last hymn. So, much to my dismay, I saw at choir rehearsal this week that one of the songs being done this Sunday is a solo version of "How Great Thou Art". Are you kidding me? I really wanted to go to church and sing this Sunday but I don't know if I can sit through that! Plus I am not just sitting - I am on display up in the choir loft. Do we really want to risk Julia hearing this solo version and start having flashbacks? I don't know if she remembers it but music is a very potent way to bring up memories. At this point, we just don't know what we are going to do about church tomorrow morning. I actually sat through a rendition of it in the past year but it was at a funeral and so being teary-eyed was the norm. So - we'll see....

That's all I've got for now. It seems that there have been a lot of grief things lately. I guess that is my life!

tinged

It has been a weird morning emotionally.

First off, today is my twelfth anniversary. It was a truly wonderful day. Memories of that day are a bit tinged with sadness today because my uncle is dying of brain cancer. We credit him with bringing us together long ago by telling his son, that he would help his friend, Luke, find an apartment only if he agreed to marry his niece (me!). I had been living with my aunt and uncle after college while I found my first real job. Luke went to school with my cousin.

On the way to church this morning (by myself, since I go earlier than the rest of the family for choir) I had the strangest urge to stay on the interstate to head to the cemetery. I never go there and found the urge very out of place. Then at church the last hymn was "How Great Thou Art". That was sung at Nathan's funeral and Julia wailed throughout the whole song. It is really hard to sing that!

On the way home, out of the blue, Lauren asked if we could go see the place Nathan was buried! We were not going on the right direction at that point and so I said we'd go another time. She doesn't recall being there and Julia has never been there. I kind of tried to explain that he isn't buried but then I had to explain what I meant by remains, moving from "dust" to "ashes" but luckily they stopped there and didn't ask HOW. I have actually kind of explained this to them before but they have apparently forgotten.

Nathan is/was one of the fruits of our marriage and so I guess it only makes sense that his death weighs a bit heavily today. I would have rather just celebrated our anniversary today and skipped the death stuff though.

We aren't actually celebrating though. It is just not something we do. We recognize the day but aren't presents and cards kind of people.

I guess it is just true of everything, everyday. It is all tinged with sadness. There is joy and happiness but it is just not the same. I am not saying this in a depressing way, really. It is just the way it is.

Time to be done?

I have been a member of the neuroblastoma mailing list since the first week of Nathan's diagnosis. It was there I learned about the antibodies Nathan got and the wonderful surgeon who was able to completely remove his tumor when the local surgeons could not. I have no doubt that me being on the listserv and learning what I did there gave Nathan extra years of life.

So - I am still a member but I rarely post.

Today there was an email from a new member. He is very concerned about the side effects of an upcoming chemo drug on his child's hearing and future fertility.

I understand the hearing thing - it is hard to realize you are damaging your child's hearing. The fertility thing? I mean of course, fertility is important. He was also concerned about the multiple lesions on his child's spine.

I guess he doesn't realize how much he is fighting for his child's life and how dire the statistics really are.

I just keep thinking how lucky this man will be if his child survives. Massively lucky! Here he is worrying about his child's future fertility and not about the efficacy of the worrisome chemo drug. Gah! It just drives me crazy.

I remember being in that point of treatment and I had realized by then I was in a fight for Nathan's life. He did lose some hearing. He wore hearing aides. It was no big deal at all. What if Nathan was alive today? What if he lived to be 25 and wanted to have children. I should hope that he and we would have enough perspective to rejoice he was alive and look into other medical options for his having children.

So - I think perhaps it is time to unsubscribe to the list. My perspective is just so different now and I cannot allow myself to say these things there.

Here is a picture from September 2006. I can't believe that is 3 years ago. Nathan in one of his favorite places, Times Square! (or tiny square as he said when he was smaller - mostly because he couldn't hear the "s" due to his hearing loss!)

First Day of Preschool 2009

Today, Lauren had her first day of preschool this year. She had a great day!

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.