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New York, Surgeries, Choices, Children, Denial

Posted Aug 26 2008 11:19pm

The Montana trip brought great peace, settled my anger with God (the first time I've ever dealt with that in my life and it took me by storm--there's so much I could say here but I know to use caution in this area) but I will say I was reminded if such purity and beauty can surround us such as we saw, then surely what I'm about to deal with can be handled, I'm just one little person, and whether things are going to be a-go or not, I came to trust in it. I still have to say I'm addressing other emotions, primarily those involving my children. Yes, I'm in counseling and it's a great help. I am tearing down the walls of my life one by one, only to find people want to help, whether it's prayer, or just a note saying they aren't sure they can help me but it is prompting them to take a good look at their own life and thanks for that. Maybe that's the point of it all.

I have made some blanket statements about testing and the fact I'm suddenly going back to NY again, that things aren't good. There are some complications from the Chiari and Syringobulbia which isn't too-too surprising--should not be happening, but should ultimately hopefully would be dealable with some surgeries. The bigger problem is during imaging (figuring out those problems), discovered an unrelated growth in my brain behind my cerebellum that supposedly has nothing to do with either disease. I have such frequent MRI's that we know it grew rapidly. These are best approximations as tests were of course local, not the same quality as NY.

They immediately ordered a second round of testing. I had them done, sent to NY. Brain and spinal series, typical. But the nerve one came back positive for some "extremely rare" spinal nerve disease that NY said is so rare even they don't understand how it's possible that 1) my brain has been sucked SO far down my brain recently (confirmed) 2) so much of my spine below my hardware has rot from the EDS (confirmed) and 3) I have this subdural h...thing that usually causes fatal brain bleeds and aren't usually found until after the fact (confirmed). So how is it I can get this "extremely rare" nerve disease SO suddenly along with all this other, excuse me, SHIT?

I expected to hear from NY with the results of the second round of testing around the time we left for Montana. Jackie was at our house the day they called. Instead of answers, they called to say they had to put all my imaging onto a PowerPoint presentation to have a meeting with all the neurosurgeons to see if they could figure out a way to get this out or not.

PowerPoint? Great. Stick me under a microscope. I'm going through MedCure when all is said and done, no use me going to waste, so very much needs to be studied. My own boy, who in the NICU with all the needles and IV's, and as a toddler got stitches, all without a single whimper, has been waking up sobbing from his hips dislocating. It's too late to stop what I've done to my boy. But going to research, I can help make sure his life gets better, and so do his children's, and Meg's, because though she's negative, her children can end up EDS positive.

Between now and NY, life is a little busy and I may not have this chance again.

Jul 6, hip ortho surgeon appt
Jul 7, my first Pampered Chef hosting party, hoping my friends will have a good time enjoying their time together at my house
Jul 9, Meg's dental cleaning
Jul 10, DH Jury Duty (funny for a peace officer)
Jul 12, Collin's orthopedist
Jul 14, getting my CCW (concealed carry weapon--I don't like people seeing it--after Sunday's tiny mall shooting of 3 people where we go, that's it; will be easy, the locals don't call me Annie Oakley for nothing; if someone broke in, I'd have no qualms taking someone down before letting anyone touching a hair on these babies.)
Jul 14 Jackie arrives and moves in with us into Collin's room--he has already moved into Meg's room (they don't have much stuff so no big deal)
July 15 our anniversary so maybe we'll BBQ or something, we never celebrate. 7 years.
July 24, Meg pulmonologist appt, Me to the Pain Man.
July 26, fly to NY
July 27, 11 am nerve retest and talk with Dr C, 12 pm chat with Dr K, sleep on the couches a bit, 6 pm meet with the neurosurgical team to make "the" decision.

Before the PowerPoint, NY told me if I have surgery, I've at best a 25% chance of improving for a few weeks. Since then, they will not speak with me over the phone, not about the growth. Only the nerve test. They are the doubting the local doctor's competence simply because they don't know how it's possible to have one more thing show up like this, which is why one of the surgeons is doing it himself, not even doing like in January and sending me down the street to North Shore and having them do it.

How do I admit part of me wants surgery, the chance to see my kids graduate, marry, have babies. This is the ONE thing that still makes me cry like a baby, and talking about it with David, my pastor, was the first time I have ever seen him cry, even through Karen and Brandon's deaths five weeks apart last year though they also were very young and left children behind.

But that just as much of just wants to be done, and am ok if they tell me during the surgical meeting in NY that they decided they can't do it. Do I sound like a terrible wife, mother?

I don't know why it's so hard. My home group has known for a couple weeks. I finally filled in my church a few days ago.

I am trying to make life seem to go on normal here for Collin and Megan. They should at least have that as much as possible. It's getting difficult to cover but they handle it well.

I'm sorry I haven't been able to share with more. Though DH knew of course, I had him shut out for the first week of knowing. For the first time at home group, I refused to speak. They asked me how I felt about my results. I shut my lips, shook my head (as much as I can anyway), went NOPE. They were lost, never having seen me in an act of defiance. They waited, thinking that 7-second waiting in silence rule would work. I refused. They sang. I sat. They read. I sat. Didn't eat. Cried every night after kids went to bed. Going to bed at 5:30 am, getting up at 7:00, or some variation thereof.

But again, the trip, I truly felt spoken to, traveling (ALLLLLLL those hours on the unexpected Wyoming and South Dakota portion to Mt. Rushmore) in such untouched beauty. No surprise at all Montana is called The Treasure State.

For now, I wait. I'm trying to keep things going as normal but the nights are long. Try to enjoy your days and the beauty around you.

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