Monthly Archives: September 2009

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!)

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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.