It is well

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

Here are the lyrics:

It Is Well With My Soul

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

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

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

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

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

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

January Pictures

Mexico

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

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








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

One-Armed Woman

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

She explains this life very well...

In Mexico

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

The party

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

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

Bad parents

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

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

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

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

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

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

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

December pictures

and also dance pictures

Happy New Years

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

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

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

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

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

Christmas without Nathan

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

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

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

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

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

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

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

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

Dance pictures

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

Christmas Card

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

Thoughts and a picture

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

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

Lunch for Life

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

Here is some information:

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

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

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

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

Here is an explanation of how your money is used:

WHERE DOES THE MONEY GO?

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

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

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

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

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

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

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

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

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

Link to Nathan's tree

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

Status report

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

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

Wintersong

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





Wintersong

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

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

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

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

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

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

Thankful

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



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

p.s.s another new post follows this one

Latest un-nap

Potty-trained!

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

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

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

NO MORE DIAPERS!!!!

Napping

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

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

November pics

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

Thanksgivings past

We've had some good and some not so good Thanksgivings over the years

 

1995 (we think) - at my Aunt Eleanor and Uncle Bill's house a few months after we met.

2001 - 7 months pregnant with Julia

2003 - in New York - Nathan was released earlier in the day from the hospital after his tumor resection

 

2006 - Stuck in the hospital for 42 days.  Dinner in the playroom .

2008 should be a good one tomorrow.  My parents and both of my brothers will be here.

Lauren's Appointment

I know some of you are wondering about Lauren's doctor appointment, due to my paranoid post a few weeks ago.

She had been doing better about the tiredness and the breathing thing did not recur, so I was feeling better. It is usually the case that I get in a panic for a week or two and then calm down, which I had.

Lauren weighed in at 25.5 pounds and is 36.25 inches high. The growth chart calculator says this:

your child is 25.5 pounds, and that is
at the 4th percentile for weight.

your child is 36.25 inches, and that is
at the 22th percentile for height.

The doctor says she is still growing on her curve, just not on the average curve. She thinks I need to make sure she is eating more fat. She suggested I slip her some milkshakes, and in fact, I got her Frosty on the way home.

We talked about her fatigue and agreed it is just her lack of sleep. She looked her over and we discussed checking her hemoglobin but decided her color looked fine and that she has always been fairly pale. I asked the doctor how I could judge whether I needed to be concerned medically about Lauren and she gave me some specifics. She also said she was willing to run blood tests anytime and at some point might want to check her blood anyway due to her small size. I said I didn't ever want to put her through anything medical because of my neuroses but she said that sometimes it could be better for everyone to do that. She suggested I bring Lauren back in in six months to check her growth and that I should just let her know and she will run more test on Lauren if I need her to.

.

Indian Summer?

I can't believe I just sent my child off to school on November 18 in Colorado dressed like this

Birthday Sunset

A beautiful Sunset just for Lauren...perhaps a little birthday present from her big brother.

 

(taken out of our bedroom window)

Happy Third Birthday Lauren!

My Baby is three!

Choir

Last night at choir rehearsal we had a huge turnout - something like 120 members.  We had to keep adding chairs.  With Christmas coming and preparing for our big concert (link to that coming soon) attendance is up.

It was wonderful treat to rehearse with so many voices, all praising God together, in a relatively small room that was completely filled with sound.  It made me stop to remember how lucky I am to belong to such a wonderful choir.

On Wednesday, over 100 of us showed up to sing for our beloved choir member, Terry's, funeral and for her husband Joe.  It was a very meaningful service that really focused on the gift of eternal life and the gift of Terry's life.

To close the funeral, Joe chose a very uplifting gospel number, "He Reigns Forever!".  Part way through the song he motioned for the congregation to stand.  It was a wonderful tribute and I was so blessed to be a part of it.

Prayer Requests

I could fill this blog up with stories of other families going through loss and hard times.  Every day I am hearing about children dying and families suffering.  It is like there is a whole world most people don't even know exists, where these things are happening and I am tapped into it.

Today I feel compelled to share a few stories and ask for prayers and good thoughts for these families.

First, from our time at the Ronald in NYC, we met a little boy, Carter, who fought NB for a long time just like Nathan.  He passed away a few months after Nathan did.  His Dad died last week, after a long road of self-destructiveness.  His sister has now lost her dad and her brother.

Second, from my time on the Neuroblastoma listserv, Sarah and her daugher Hannah. Sarah has been so supportive of me over the years. Her daughter succombed to cancer this past week after a six year battle.  Beautiful Hannah left behind her parents and two little brothers.

Thirdly, another supportive online friend Missy, whose son Ryan has been battling NB for a number of years.  Ryan relapsed last year and has been travelling to NYC for treatment like Nathan did.  Unfortunately Missy was diagnosed with cancer last year as well.  She had been doing well but has been discovered to have relapsed and is in the hospital.  She and Ryan and especially her husband and other children are having to undergo far more than a family ever should.

Long Journey

My choir lost a beloved member this week.  I loved singing next to her and chatting with her.  This is for her and her husband.



"Your Long Journey"

God's given us years of happiness here
Now we must part
And as the angels come and call for you
The pains of grief tug at my heart

Oh my darling
My darling
My heart breaks as you take your long journey

Oh the days will be empty
The nights so long without you my love
And when god calls for you I'm left alone
But we will meet in heaven above

Oh my darling
My darling
My heart breaks as you take your long journey

Fond memories I'll keep of happy ways
That on earth we trod
And when I come we will walk hand in hand
As one in heaven in the family of god

Oh my darling
My darling
My heart breaks as you take your long journey

Halloween

I will post a few pictures here. There are more in the October Pictures post before this one.

The only Halloween with all three kids, October 2006.

October Pictures

Quack

A little while ago I asked Lauren when she wanted for her birthday.  I was expecting some hemming and hawing from her but she very quickly said "A rubber duck!"

I told her that we actually had several rubber ducks upstairs in the tub and  now she is hemming and hawing.

I have no clue where she got that one from!

Reaction

So - I just don't know how to have a normal reaction to childhood illness.  I guess it is not surprising but I just don't know how I will get through the rest of my girls' childhoods.  It seems when I see some kind of symptoms I initially overreact, but then when I start thinking about it maybe I underreact just so that I am not overreacting.  I have lost sight of what a "normal" parent would be concerned about.

As usual, I am concerned about Lauren.  She is always tired.  She walks around saying "I am So So So tired".  She probably does not get enough sleep, but still - what almost three year old says that!  She is pale, she has dark circles under her eyes.  Well - at times I was a pale child with dark circles under my eyes - so that is probably just genetic. 

Today after preschool she looked wiped out so I asked her what was the matter.  She said " My breathing is just hard today".  What does that mean?  I checked her out in my mommy way - I counted her respirations and listened to her breathe with my ear on her back.  I looked at her lips and nails to see if they were at all bluish.  I took her temperature.  All were normal.  I wish I had a pulse-ox thingy.  If you recall, she had to have an echocardiogram about a year ago due to a very pronounced heart murmer.  The doctor said she was just fine.  I wonder though.

I was tempted to take her to the doctor after that comment but that is when I get so screwed up and feel like I have no perspective.  She has an appt. on Nov. 18 for her three year checkup.  I am going to voice my concerns and request they test her hemoglobin.  So - I am just trying to wait until then.  Meanwhile I am afraid maybe there is something wrong with her and I shouldn't wait.  But, there is nothing I hate more than taking a child to the doctor and having them tell me she is perfectly fine.  I feel like an idiot.  Plus, it is only a few weeks until that appointment, would I then need another appointment for the three year appointment?

Ughh.

As an aside, my friend Sherry, who is president of the non-profit I am working with and whose daughter died of neuroblastoma, is in the hospital with another of her daughters.  Her daughter was on the bus and the bus driver was egged on by the kids to go over a dip fast and she did and this little girl hit her head on the ceiling and landed on her abdomen and lacerated her liver.  Beside the obvious horrors of this accident she is having a hard time being in the hospital with another daughter.  I went to visit her on Sunday and it sucked just to be visiting.   As I have said before, the universe is not fair and losing a child does not make your other kids immune.  I wish it would.  Her daughter is expected to recover fully, thank god.

Revived

I won't bother linking back but 2 years ago I killed my laptop.  I lost everything on it.  I tried everything to get the data back and read all the silly tricks.  None worked.

About a month ago my current laptop's hard drive died.  I had the computer out and about with me and when I got home and took it out it said "no hard drive detected"  I took it out, but it back in, hooked it up to our desktop and it was just dead.  I bought a new hard drive and went on from there.  I had backed up data in May and had most everything I needed.  Pictures are always backed up and in mulitple places so I am not at risk of losing those ever.  As a side note to that, one of my pieces of advice to people with all their pictures digital is that next time you are going to visit good friends or family out of town, make a backup of all your pictures and bring them with you.  Leave them with you family.  Now you have off-site backup

Now - back to my story.  Yesterday I left my laptop (running)  on my bed for a good part of the day.  Later in the afternoon I brought it downstairs and put it on the  coffee table.  After dinner I walked over to it just as it was trying to reboot and got the dreaded no hard drive message.  I popped the hard drive out and it was very hot to the touch.  I put it back in and tried to boot again with no avail.  I remembered one of those weird hard drive recovery hints - putting the hard drive in the freezer.  So - I popped it in the freezer for about 15 minutes until it was cool and then put it back into my laptop and it booted right up.  I backed up my files and turned it off again.  Today it is working just fine.  I will be watching the temperature from now on.  Crazy!

Not offended easily

I sat in a coffee shop reading for a little while (When You are Engulfed in Flames, David Sedaris). I was the only customer in there for most of the time and then a friend of the sole employee arrived and they sat chatting. I sipped my coffee and read my book and didn't hear a word they said. I then decided to get up and leave and the friend apologized saying she was sorry if she was driving me away because they were talking about strippers. I told them I was reading and had not even heard them but I am not sure they believed me. As I rolled away in my minivan I am guessing they thought they offended me. I could have cared less if they were talking about strippers. What would have driven me away would have been if they were talking about how much they loved the presidential candidate I am not voting for and bashed the one I did vote for. I'd rather hear ANYTHING but politics right now!

New Poll

I have tried to keep politics out of my blog - especially since a few of the blogs I read are not keeping it out and I disagree so strongly with these people it makes it hard to read their blogs now and may change my view of them in the future. So - I don't want to do the same to my readers. However - I am curious how my readers are voting. So - please make your choice in my poll (in the sidebar) and if you leave a comment - please don't talk politics!

The end of an era

I sold our crib and changing table yesterday. They served us well for 8 years and three kids. They were good quality. One of the few arguments Luke and I have ever had was over that crib set. He thought it was too expensive. I accused him of wanting our unborn first child to sleep in a cardboard box.

Lauren is almost three! Where did the years go.

People really do that!

I have seen caricatures of women who keep things in their bra/cleavage. I have seen it in the movies. I never thought I'd see it at ballet class - by a woman my age, no less. I heard a cell phone ring, looked over at her and she promptly reached into her cleavage, extracted her phone and answered. Oh-Kay....

What I have been up to.

I have been posting here and there but not really about everyday life. I thought I'd share some things.

1. PRESCHOOL...

As I referred to in the previous post (also written today) Lauren is in a mom's morning out program at a nearby church. It is from 9-1 every Monday and Wednesday. One of her best friends is in it too and she LOVES it. It is not just a daycare situation, it is a structured learning environment and it makes her feel like she is going to school. Since she wants to do everything that Julia gets to do she loves having her school.

I love her having school too! I have some free time to do things for myself. I run errands, go to the library, sit in a coffee shop, meet people for lunch, and have my thoughts to myself for a little while. It gives me free time for another venture which I will get to later in this post. I know that all too soon she will be in Kindergarten (2 years, 10 months) but I also know I will not regret having her in this program.

2. VOLUNTEERING....

I was unable to commit to much over the years Nathan had cancer. My schedule was too unpredictable for that and all my energy was spent on his medical care. I am free from those things now and of course, I wish I weren't.

On Wednesday mornings I am helping out in Julia's classroom during the reading hour. It is fun to be in there and I love her teacher (who was Nathan's teacher).

On Wednesday evenings I am helping out (not leading!) in Julia's choir at church. This involves a lot of "babysitting" because there are kindegarteners in there who have been in school all day and are just plain done sitting and listening. Interestingly, I seem to end up with one or two kids on my laps and others leaning on me during the hour and a half. This is not interesting in that the kids want to, it is interesting because if you know me, you probably do not picture me with kids hanging off me. I am just not that kind of person. Why they gravitate to me for that is beyond me, but I actually enjoy it. They must see something that I don't see.

The last half hour of the evening is in the gym, but not to play, to have devotions. That is VERY hard on these younger kids. I was initially to lead these kids with questions I was given. I quickly realized I was ill-equipped and asked for some help. Fortunately they have given the questions over a senior high leadership class so I am off the hook. I will just continue to wrestle with the kids to keep them sitting in the circle.

The other thing on my plate is a non-profit organization I am involved with. This organization exists to serve the families being treated at our local pediatric oncology office. The woman running this organization was going to dissolve it. A friend of mine, whose daughter also died of neuroblastoma, decided to take it over. She has gotten it transferred to her and changed the name to Nevaeh's Wings. We are kind of rebuilding the organization from the ground up and are trying to keep it simple for now. One of the new things we are doing is holding support groups for the caregivers. We are having our third one tonight. We will also be reviving a photography program for the families and hopefully add a peer support group at some point. Perhaps a grief one later down the road.

3. GRIEF STUFF....

Julia continues to attend group therapy through hospice twice a month. Luke and I attend a child loss grief group through hospice. We may not continue that for too long. It has been mostly parents who lost infants for 6 months now and the losses are soe different we are not getting very much out of it currently. Julia still loves hers - I have told her she will have to stop sometime...but I don't know if that is true...I just don't want her her to count on doing it indefinately if that is not possible.

4. CHOIR....

Still enjoying choir...Thursday nights. We do a big Christmas concert every year at the local symphony hall with a bell choir, big band, symphony, soloists and this year, ballet. We are starting to gear up for that.

5. DANCE...

Julia and Lauren are still in dance. I am not sure for how long they will continue but for now they both enjoy it. Lauren tells me she doesn't want to go and then has a lot of fun. Last Friday she said' "Ballet is one of my most favorite things, but I don't feel like going today". She is at the age where she really wants to be in charge of her own agenda....too bad!

6. FRIENDS...

We are now having dinner every Sunday evening with two other couples. It is wonderful to have a set time like this. Luke and I isolated our selves for years and it is nice to begin to get out of that.

My busy schedule leaves little time for attending playgroups. Several of us longtimers have kids in school and preschool now and so it is not as regualr as it used to be. I went to a playgroup this morning with only one other attendee, however it was was very good friend Myndi, so it was nice to catch up with her.

There is more stuff (I am not forgetting Luke) but I have run out of time. Thanks for reading. (there is another post below I wrote right before this one)

Out of the mouths of babes....

Lauren's mom's morning out program is at a baptist church.

After school yesterday she was trying to tell me all kinds of things about God and Jesus. Finally she said "Jesus is your most allegiant friend" I asked to her repeat it and that is what she said. I told her she was right. They say the pledge of allegiance every morning so I am sure that is where she got the word.

September Pictures

Childhood Cancer Awareness Month - The Big Picture - Boston.com

I was asked permission to include the photo of Nathan - #6.  The author told me he gets about 500,000 hits a day on this site.  I am thrilled for the attention for Childhood Cancer Awareness

Childhood Cancer Awareness Month - The Big Picture - Boston.com

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11 years

I didn't get around to posting but yesterday marked 11 years of marriage to my wonderful husband, Luke.

We were driving back from the Denver airport as we noticed it was almost exaclty the time of our wedding on east cost time.  Luke was supposed to come home Friday night to Colorado Springs but due to airplane problems had to spend the night in Minneapolis instead.

Earlier in the week I was talking to a friend who, along with her husband, watches the girls for us when we go to our grief group.  She had been sick for the last one and had been wanting to make it up to the girls.  She suggested Saturday and then it dawned on me that it was our anniversary.  So - we got to go out last night and we had a really nice time.

I had to laugh when I was trying to get ready to go out to the sounds of  football in the background and screaming, hyper kids.   Eleven years of marriage also brought three kids.  There will be peace and quiet at some future anniversary.

Letter

These are two of the things that Julia asked me to put up on her wall above her pillow.  She colored the cross in Sunday school for Nathan.

When I put them up I added this picture as well.

Feeling cranky

As usual I haven't blogged because I mostly have a swirl of things running around my head. All the PINK breast cancer stuff is annoying me. What about childhood cancer? I was just commenting on someone else's blog and it made me think of the poor shoppers confronted with a gold (childhood cancer color) mixer at Target. "Gold - oh that must be to support research for childhood cancer - Oh my God - I'm not buying that! Now I am thinking about kids having cancer and I don't want to shop anymore." I am glad there is so much awareness now about breast cancer. I have known women with breast cancer. This is not against them but is about moving forward to children.

I am also cranky because I haven't been feeling great and have been eating horribly - the kind of mindless eating that is bad for you. Purely emotional.

Luke has been having all kinds of problems with his ears and allergies and has been swamped at work and is now travelling this week. He hasn't been all that cranky even though Lauren has been extra cranky lately and I have been all but unavailable to him - sitting here behind all my walls where I retreat to. The problem is, when I do that, most people have no idea because I can easily function. In fact it is easier than ever to deal with casual relationships when I am like this. It is my close friends and family that bear the brunt of it.

Furniture was rearranged this weekend. Julia now has Nathan's dresser and there is a shelf on her wall with his things that were on his dresser (at her request). Thank goodness at least I can blog about this because I haven't really talked to anyone about it and it was really hard - but how does one just bring it up in conversation. "Oh and by the way I took all my son's things down from his room and put them on a small shelf. This small shelf now represents that my son used to live in that room." No one I will let myself really talk to about that so I just stuff it inside me. So - I guess it at least comes out here.

One thing I really appreciated this weekend. I went to a girls night at a friend's house. Most of these women I know only very casually. One of them came up to me and told me that she didn't feel right not saying anything and she didn't know how to say it but she wanted to tell me that she knew Nathan's story and that she admired the way I seem to be coping with it all and that she just didn't feel it was right all these times she has chatted with me to not say SOMETHING about what I had been through. So many people, but especially all the moms I am constantly around, have no clue what to say to me and more than that probably don't even want to think about it. I mean, I am just proof that something like that could happen to them. It is too scary. So - nothing gets said. I have prefected answering the "how many kids do you have" question. I do it is in such a way that I mention Nathan last and say that he died and then I very quickly CHANGE the topic lest I have to stand there and watch them try to get the shocked look off their face and try to come up with something to say. I tried to stonewall the dental hygenist last week. She asked if I had kids and I just said yes. She later asked if they were in school and I just said yes. She finally ended up asked me how many and so then I was stuck with answering.

Anyway - I guess I have managed to spew some of the thoughts that have been hanging around inside me. If you read this far - sorry and thanks.

Monday

Luke has been gone all weekend camping with his brother, Josh.  I hope they haven't frozen - it is a little cold here.  He did take the van so in an emergency, they could sleep it that.  I hope to hear from him later today.

I am feeling pretty good about making it through the weekend with the girls fairly sane.  I have several friends with deployed husband and husbands that travel almost 100% of the time so I have to acknowledge that I am a wimp.

The weekend included an impromptu invite to my house to a young couple being interviewed by my church and I am happy to say my house was clean enough to make that happen.  They were given my name as someone to help them get a feel for the neighborhoods and schools in town.  Luke and I have been working hard at keeping our house much neater and cleaner than in the past and so far it is working well and it was nice to see the positive outcome of doing so.

Last night was  a milestone for Lauren.  I have been talking to her about the bed in her room for a while and about how pretty soon she could start sleeping in that instead of her crib.  Last night after I rocked and read to her she got down and sat on the bed and said she just wanted to sit there for a minunte.  I told her that she could sleep in the bed if she wanted.  She said yes and I snuggled her in and she did great.  The crib will come down very soon.  That will be a bit sad.  It was down for about a year in between Julia and Lauren but this time it will be down for good.  It was nice not having to get her out of her crib this morning but I did meet her at the door as she was heading down the stairs just to check on her and so shortly thereafter she was calling me to feed her breakfast.

It also helped me get through the weekend knowing that this morning I would have four hours to myself.  Lauren is an a moms morning out program and this is her second day going (she started last Wednesday).  So - I am typing this from Panera, drinking coffee, by myself.  Ahh....

Entertaining a 6 year old

How much is a mom supposed to entertain a 6 year old? She is moping around right now. So far today we went to a toy store to shop for a birthday party and then spent an hour an a half at the library where there was a 3rd birthday party going on for the branch was activities at food. She told me many times how much fun she was having and what a good day it was. We got home, had a late lunch and she played with Lauren and watched a movie. She then went to a birthday party for two hours and came home and had food (even though she ate at the party). Now she is sitting in the chair moping. I suppose part of it is that I denied her request to play a video game and she wants me to read a book but I can only see out of one eye right now (allergies) and the book is yellowed and type small.

It just frustrates me - I cannot provide entertainment 24/7. Even Lauren is entertaining herself - she is playing and talking to herself.

Sweet

I just love this picture...Julia is 4 months and Nathan is 23 months. He was always calm, gentle and loving even as a toddler.

Techinal issues....

*** Update - I have put a temporary personal theme up ***

Whomever created my theme has exceeded their bandwidth on photobucket. I will hopefully have my theme (or a new one) back up soon.

Unearthed....

...no pun intended

Luke and I have been having some allergy problems.  I decided we should deep clean our bedroom because it had been a while.

A long while....

So - I moved the couch and was unpleasantly surprised to find this document:

Mountain View Mortuary
General Price List
Children 7-13 Years

Yes - did you know that age affects funeral costs?  We just missed the 6 year cut off by a month...

What a crappy document.  No parent should ever have to seriously read this damn thing.

Anyway - here is page one if you are curious...no room for denial when you read the line items. (click to make bigger)

August 2008 Pictures

33 months 15 days

Lauren is now the same age Nathan was when he was diagnosed.  It is so hard to look at her and remember him that young.

I don't know if it is related or not but I have been having a strange vision/thought lately with her.

I will be changing her diaper and when I see her hipbones I envision bone marrow aspiration marks.  In NYC they did bone marrow from the front too and something about the current size/look of that area reminds me of Nathan I guess.  It has happened more than once and is kind of disconcerting.

I have a lot of irrational fears of her getting neuroblastoma.  Natural, I know but not rational.  I go through periods of panic about it and wonder if I should have her urine tested or an ultrasound.  Sometimes I wish I could just get a CBC and see normal blood counts.  However, I wouldn't do that to her, even if her doctor agreed.

I only write down a fraction of the strange and horrible thoughts that go through my head.  You would all think I am crazy.  I saw SO MUCH.  I saw things a parent should never have to see.  I wish I could have those memories erased because they do affect me.  However - I just have to live with them and manage to weave them into the rest of my life's experience and hope that at some point I will not be so traumatized by them.