Showing posts with label spinal cord lipoma. Show all posts
Showing posts with label spinal cord lipoma. Show all posts

Sunday, July 24, 2016

Truth

I didn't want to go to church today.  I love being there.  The body I'm part of almost always makes me leave feeling encouraged. But, I'm feeling a bit raw right now, and did not want to go because I knew what I would do.  And I did.

 
 This summer has been full.  Appointments mixed with some fun things.  But, the appointments have all felt heavy.  This week we have two appointments.  The following week we have an appointment.  The following week we have an appointment.  The following week Asher has surgery.  And, in that mix, we're working on preschool and IEP stuff for Shilo.  And, Abigail goes back to school.  And, Jason has had so little time off.  It's all just sort of building up.  Which, in and of itself leaves me feeling overwhelmed.

But, the surgery is, quite honestly, the thing that is always right there at the front of my mind.  I'm not any more nervous about the surgery than I have been others, my kids have had.  I think he'll do great.  I think he'll recover.  I don't think there will be complications.

I don't want to do this.  I don't want to drive to the hospital, and sit in a small room pre-surgery with a hungry baby.  I don't want to sit in the waiting room for hours, while a nurse rounds every hour telling us how it is going.  I don't want to see the healthy, active toddler I handed off, in pain, and with tubes and wires.  Most of all, I don't want to hand him off.  I don't want to give him to a doctor.  I don't care how great she is.  I don't care if she's done this surgery lots of times.  I want to be anywhere but at the hospital, giving my third child over, for a major surgery.  I'm tired of major surgeries.  I'm tired of surgeries.  I'm tired of doctors.  I'm tired of diagnoses, and medical, and all of it.

So, as we sang this song today, I sobbed.  And, during the sermon, I cried some more.  And, at the end, when there was prayer, I sobbed again.  I don't know when hard things will end for us.  Perhaps, never, this side of heaven. I don't have anything great or beautiful to end this with.  The things I might usually say here, while still true, are not how I feel at this moment.  I want to be honest.  And, I want people to know that it's okay to struggle without having the answers.  It's also okay to let your friends struggle without trying to give them the answers.  Sometimes, things are just hard.

I will leave you with a few pictures because it's been a little while since I've shared any. 



Asher nursing while Shilo snuggles.





Fourth of July fun!

Wednesday, July 6, 2016

Storms.

I live in the Midwest.  We tend to stand on the porch and watch as the storm clouds roll in, and the thunder begins.  But, once the weather gets strong enough, we head back in to our protective covering.  And, if the siren goes off, you better believe we're headed to the basement.  We aren't taking any chances.  We know how to appreciate  a storm, and we know when to retreat to safety.

Today, I took my three trips to the car.  First, I loaded our diaper bag, and gear for the day.  My second trip, I buckled Asher in.  And, as I stood on the porch locking the door and holding Shilo, it began to sprinkle.  She was my last trip. I got her in her seat, and hurried around to get in, and out of the rain.
I drove off.  The rain wasn't very heavy.  I was headed west.  The rain was headed southeast.  So as I drove, to the left of me, the sky was dark, and promised a good storm.  To the right, there was a reminder that the storm was going to pass.  And just ahead of me, very faintly, stood a rainbow you could only see half of.  I drove towards it.  It appeared to be just beyond me, giving the illusion if I drove just a little further, maybe, just possibly, I could pass under it into some magical utopia full of great things. 

But, I knew that wasn't in the plan for the day.  I was going to head west for only so far, and then my destiny was due south.  Right through the storm.  So I took a deep breath, gripped the wheel, and turned on my headlights. 
It wasn't long before the downpour was so hard that even with my wipers on high, and a slower speed, I could barely see any of the other vehicles around me.  But, I trudged forward, at a slower pace to remain safe.  I didn't have much choice.  I had to be somewhere, and the only way to get there was to drive through that storm.
By the time we reached our destination, the sky was beginning to lighten.  There were only reminders of the passing storm in puddles, and wet things.  We made it safely to where we were going.

As I was driving through it, I kept thinking about how appropriate it was to be in that storm today.  How it felt like a metaphor for my day.  It started with picking out a wheelchair for Shilo.  It needed to happen.  We're so glad we did it.  But, it was sort of like a light rain.  Not horrible.  You know it's good for the plants.  But, it still feels a little less than ideal when you have to deal with it.
Shilo totally rocked it though.  She quickly figured out forwards and backwards, and we got excited about the independence this could bring to her.  There was a half of a rainbow, looming overhead after this storm.

But, the next appointment felt like the downpour.  We sat in the neurosurgeon's office discussing what releasing Asher's tethered spinal cord would entail.  It felt like too much.  I could barely see, and was trying to navigate slowly.  In the end, it's also good for the plants.  But, it also can bring potentials with it that aren't as great.  Things like lightning that can harm.  Flash flooding.  Slick roadways.  So, we move ahead, cautiously.
For now, we are awaiting an appointment with cardiology to give clearance for the surgery.  But, in the near future, the doctor will move bone, open up the membrane at the bottom of the spinal cord that contains spinal fluid, and remove the lipoma from his spinal cord.  She will sew it back up, and then Asher will be required to lay flat for at least 24 hours.  She's done this a million times.  She's great at it.  This is our first time.  And, there are risk.
So for now, we cautiously head into this next storm.  The other side should be blue skies.  Fluffy clouds.  Puddles to jump in.  But, right now, we're driving slow with our headlights on.  We've driven through a lot of storms.  This just happens to be then next one.