Monthly Archives: July 2009

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.

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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.

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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

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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.

Protected: June 2009 Pictures

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