Archive for September, 2009


One of the problems with scheduling surgery 6 weeks from an initial consultation, is the 6 weeks it takes for the surgery date to arrive.  It gives a person too much time to think about all the details and worry about every little thing.  Too much time for one’s mind to race and anxiety level to creep up.

It’s a good thing today is a therapy day.


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The Relocation

When I was first diagnosed with the Chiari malformation and we began to learn more about it, Cris and I talked about care/treatment options.  We both felt very strongly that if surgery was recommended we would head out of Idaho Falls to find more experienced neurosurgeons.  Salt Lake City was our preferred choice, but we’d agreed that we’d head to the Mayo Clinic if necessary or other Chiari-specific treatment centers.  So it was a relief to us to be so comfortable with Dr. Schmidt’s expertise and the recommendations I’d received from others about him.

After announcing the surgery date, we had multiple offers from friends to let us crash with them while in Salt Lake City.  While we greatly appreciate the hospitality we opted to find a vacation rental for our time instead.  With family coming out, visitors coming by and me needing a place to crash post surgery, I just felt more comfortable having our own space.  Cris originally just wanted to get a hotel room, but after listening to my reasons why I thought a house/condo would be better, he agreed.  Thankfully we found someplace that will let us bring the dogs with us to SLC and save another expense.  Although the place he decided on is smaller than the one I originally looked at (but logically I couldn’t justify spending another $400 on the bigger place), it will work perfectly for us and my family who’s coming out for surgery.

My hope is that the house gives Kate a better space to be in for the time we’re away.  Less disruption for her.

Right now, we’re planning on being in Salt Lake from October 1st until the morning of the 10th.  I have a pre-op appointment at the hospital Thursday afternoon; my sister also flies in SLC early that afternoon.  We won’t know Friday’s surgery time until I go in on Thursday.

The neurosurgeon said 3-5 days in the hospital so I should be out by mid-week (October 7th or 8th) the following week.  We’ll then stay in the rental until Saturday morning and head back to Idaho Falls then.  My sister flies back home, leaving the morning of the 10th, so it will work out perfectly that way.

I’m sure that I’ll feel much better once home, but being in a vacation rental for 10 days is a fine option if that means better care and facilities.

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She’s Growing Up

We had some neighbors over yesterday for a get together.  One that was LONG overdue.  We’ve been in this house for just over three years now and this was the first time we’d had them over.

At one point, I sat in the garage (stupid 20 mph winds and freshly worked neighboring field made us rethink our idea to be in the backyard) and watched Kate interact with the other kids.  It was so clear that she’s turned into this little person, instead of the baby we brought home from the hospital almost 3 years ago.  She no longer needed me to be with her every second.  With the help of the older girls she no longer needed my constant watchful eye.  The girls ran in and out of the garage, through the adults; they’d play in the driveway and front yard, then make their way into the house to play in Kate’s room, then they’d head upstairs to watch TV and grab chocolate chip cookies off the table, run out the front door to play in the driveway again, flitting back into the house once again.  Kate would stop in the garage to drink her Dr. Pepper and “help” Ayden play in the jumperoo.  She’d give me a hug or say something to Ashley and Ryon and away she’d go.

Although it’s hard at times to see her grow up, I’m grateful that she’s at the age she is for my surgery.  She’s old enough that she has some independence.  She can get herself a snack out of the fridge, she can go potty on her own (pretty much), she can tell us what she wants and needs, she can get on all of our furniture by herself, she can get in the tub on her own.  She has a fantastic imagination and can weave the most creative stories and situations to play out.  The realistic part of me knows that the next 8 weeks will have an impact on her.  I know she will act out and struggle with some of the changes we’re facing.  We’ll get through them though, one change and meltdown at a time.  And hopefully at the end of all of it she won’t remember the surgery; she won’t remember the weeks of recovery; she won’t remember how sick Mommy was before surgery.

As she grows up, all she’ll remember is the Mommy that I desperately want to be.

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Writing to Write

I learned the hard way this week, that I can NOT sew anymore until after surgery.  On Tuesday night I hemmed the new curtains for Kate’s room and made a quite valence out of the fabric I cut off the bottom.  It was no more than an hour of work, but completely knocked me out of commission for 24 hours.  Within 15 minutes of finishing one of the worst headaches I’ve had kicked in and kicked my butt.  I went straight to bed in an attempt to kill it before it got any worse.  The next morning I woke up even worse and called Cris in tears at 10am to come home.  For the first time in 20 years, I wished that we could call an ambulance for treatments; I honestly didn’t know if I could make the 6 minute drive into Urgent Care.

One of the before surgery “to do” items on our list was to get the trailer put back together and get out camping at least once this season (we’ve been out of commission this summer due to a horrible water leak, which caused us to tear most of the trailer apart to fix the damage).  We made the executive decision yesterday morning to put that on hold until next spring.  We’d much rather take a day next weekend and try to go to Yellowstone one last time before the park closes for winter.  There’s no need to make myself sick(er) by trying to plan and execute a weekend camping excursion.

We’re within days of signing the final drafts on our wills, medical directives, power of attorneys, etc.  We started talking about all of this stuff before Kate was born but never got around to actually doing anything about it.  After the Chiari diagnosis we felt, or more correctly, I felt it was imperative to get everything in order before surgery.  I’m not being fatalistic; I’m not scared that I’ll die.  It needed to be done.  This was just the incident that kicked us into gear.  Anyway, having to think about all of that stuff and make decisions is really hard.

Even with my sleeping pills, I’m struggling to sleep well.  I take forever to fall asleep and wake up early.  Unable to get anymore rest before needing to start the day.  What sleep I do get is filled with strange, random dreams.  I miss the nights of falling asleep easily and getting a blissful 8 hours of rest.

I’m starting to see glimpses of the stress all of this is putting on our household: behavioral issues with Kate, impatience in Cris, strained communication within our marriage.  I wish none of this had to happen.  I just hope we can all bounce back after recovery.

Today I’m tired, scared, hurting, angry, confused and optimistic.

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I’m trying to take all of the thoughts bouncing around in my already crowded head and weave them into something eloquent.  Or just something coherent in general.  I’m not having any luck.

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The 2nd Stage

I was told by my therapist that I will cycle through the five stages of grief (denial, anger, bargaining, depression, acceptance) in regards to being diagnosed with Chiari and the upcoming surgery.

From the last couple of post I’m beginning to think that I’ve moved from the first stage of denial, squarely into the second stage.  Anger.  I have moments of depression peppered amidst the anger.

With only 17 days until surgery I’m not very optimistic that I’ll work my way through to acceptance before then.

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Things I’ll Miss

It’s hard when life throws you unexpected twists.

It’s hard when those unexpected twists prohibit you from fulfilling promises.

On June 1st, my youngest sister told me not to worry about making a trip to Michigan for her upcoming baby shower, that she’d rather have me there for Christmas for the birth of her baby.  I told her, “I WOULDN’T MISS IT FOR ANYTHING” and she “couldn’t keep me away from a baby shower”.

Her shower is set for November 7th.  Chiari and brain surgery will keep me from her baby shower.

I hate the things I’m missing out on.

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