Sunday, July 23, 2017

Sounds of Contentment

Without a doubt, the last few weeks have been a messy time for us.  Kind of out of control, sad and messy and sometimes I worry that I am not writing enough about the really good things that happen.

Every day, good things happen and I am blessed to usually see those good things and despite the drama of sad things, we laugh a lot around here.

Yesterday, I was blessed to spend just a few minutes with 'Little Miss'.  She is a half sister to my kids.  I call her Little Miss and she calls me Kat and sometimes, I think she is my best friend.  She is so smart and has the sweetest disposition.  If truth be told, she is always saying nice things about me..."Your hair looks great today Kat!" so what's not to love about having her hang around?

 Yesterday, my Wasband was helping Spencer move a desk and stuff over from Spencer's room at his dad's and she came along to help.  She really comes to spend time with the kids but since they weren't around, she got to spend a minute with me.  I love to spoil her.  I say to her, "Ask your dad if you can have some chocolate."  Of course he says "No" because dad's think it's so important to show authority but Kat?  Kat says..."Goody!  Hold out your hands!" and then I pour handfuls of M&M's til her little hands can hold no more.  Then, her dad growls at me and Little Miss and I laugh and laugh!





Sam moved home this week.  Oh how I have missed that boy!  I am a way better mom now that GIFs exist.  I pretty much communicate with Sam in GIFs.  Before GIFs I would send him sentences written just in emoticons, which he hated and that's why I did it...You know, to show him my love.

We have had to discuss curfew...He thinks he is an adult...I think he is still my little...Here is our latest string of text messages.


So, I told him curfew was 1 am.  His reply was "I know, I know." But of course, what mom is just going to leave it at that so I send him that Judge Judy GIF and actually, it's animated and she's tapping her imaginary watch. We go back and forth...It finally ended with him sending me a chicken running around 'screaming'.  We have a good time.  I especially love it when he comes in to tell me he is home.  Lately, I've been laying there awake at 2 am...because he's always late (he always lets me know he will be late...so I guess that's good.) He doesn't know I am awake because it's pitch dark so I wait for him to poke me and then I say some unsuspecting thing and he always ends up mad but a happy mad.  He's a good kid.  I'm glad everyone is home.

Yesterday, I felt pretty tired and lousy but I got a huge task accomplished...Organized the medications.  I have been dreading all these new meds the kids have to start and I need to be organized.  These new ones have a strict schedule.  I had some in bins, some in cupboards, some in baskets, some in the hall closet.  These are all current and necessary meds.  When all pulled out, they fill up two counters.


 It took me over two hours to get it all figured out.  I have a good system now for all the IV and plasma supplies so I feel settled.

Oh, this was an amazing thing...Dr. Gundlapalli texted me out of the blue, concerned about the kids.  He moved our August 24th appointment to the 11th. When he heard that Shelbie has Epilepsy, he is going to increase her plasma dose again which is never easy and means longer transfusion time but I know it has to be done.  My sister will be here which is a bummer but hopefully she won't mind a field trip to the Great and Spacious State of Utah.  This doctor has 3 or 4 medical degrees and a Doctorate degree in Philosophy.  I love him!  He is so kind and thoughtful.

To wrap up the week, I had my Saturday night tradition of sitting by the fire to decompress by myself.  Shelbie and her new friend were going to come out and join me but boys showed up and well, you can guess that meant the young men became way more interesting than the mid-century mom in her camo leggings roasting marshmallows alone.  Ha ha...I love this life even though at times, it may not sound that way.


Tonight, the kids are hosting a YSA game night.  There are so many young adults here and my house is filled with laughter and joy and that makes me happy!  I'm going to call it a night and spoon with the dog and fall asleep to the sounds of my kids enjoying a moment without a care in the world.

Shelbie's monitor comes this week.  I lost two big design jobs I was suppose to start tomorrow but I think God knows, I need a little break to figure out our new normal of monitoring so it's all good.  He's got this.  Spencer got a job in Utah this week!! Just out of the blue and a kid from church thinks he can fix his car for him and it won't cost as much as he has been quoted.  Spencer will be building fences in Salt Lake for a few days so he's pretty happy to have something meaningful to do...but he is suppose to start his new meds for his heart.  He needs to be monitored while he gets them started because they could drop his heart rate too low so he needs to be on them for a few days to see how he will respond...I guess we will start when he gets home.
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Saturday, July 22, 2017

The Art of Insanity

One thing I hear all the time...All. The. Time!!

"Well, what else is new, at least you are use to this."  This is the comment when people find out we are still dealing with 'stuff'.  Health stuff.

NO.  We aren't use to this.  We will never be use to this and if anything, every day is getting harder.

The worst part is, half the time we don't realize the toll this is taking until it all explodes in a completely unsuspecting moment.

Sometimes, those moments happen in a hospital parking garage at 3:00 in the afternoon when people are coming and going but there you stand in the middle of the road, falling to pieces and unable to form a logical thought.

Not my finest moment.  After 10 minutes of melting down, I was able to call Spencer for help.  He had just driven off after his appointment to come home.  I had parked my car just three cars down from his but it wasn't there.  I ran up and down the two aisles of the hospital parking garage and my car was nowhere to be found.

I was in a panic and so confused.

He came back and found me and still, it took us 10 minutes of driving around before I found my car.  Even the panic button wasn't working to help me find it.  Finally, I opened the map on my phone and because I have Bluetooth, my car location showed up on the map and that is how I found it.  We had both forgotten that in the middle of our hospital visit, I had moved my car...Long story!

Anyways, it's times like this when I realize just how little we are holding ourselves together with.

This was my first time back with Spencer to Cardiology since I watched him die last Fall and be brought back to life.  He has had many appointments but each time, we had conflicts with the other kids and their appointments so Spencer went alone.   Earlier in the day, Spencer asked if I was going to be okay going back to the room where it all happened. I didn't think it would affect me but it did.  It did even before I stood in the middle of the parking garage where I couldn't make sense of my life.

It was a hard day!  Spencer has lost 8 pounds!  He's been lifting weights and when he does that, he usually puts on a ton of weight but not this time.  It doesn't make sense.  I'm a little nervous about where things are going with him.  When he took off his shirt to get the EKG, you could see every muscle in his body.  He looked ripped!  I mentioned that to him.  He reminded me that he has not one ounce of fat left so all you can ever see is muscle and bone.  That gave me a completely different perspective.

It was hard to see a half a ream of paper with his heart beat printed on it...several sheets of notes when his heart was not beating regularly.  We are going to keep trying medications.  They changed the parameters of the recorder because they think they are missing data from when his heart rate drops.

I asked about a pace maker and he said, "We only consider a pacemaker when the heart rate is too slow, below 60 bpm, even 50 bpm."

"So, you have pages and pages of data when Spencer's heart rate is consistently in the 30's...we don't have enough data yet?"

And then the classic response...."Well, Lance Armstrong had a resting heart rate in the 40's."

Great!!! Lance Armstrong isn't my son!  Lance Armstrong still had a heart rate 10-15 bpm higher than my kids.  Lance Armstrong was a conditioned athlete!  My kids are just trying to climb the stairs to get to their bedroom at the end of the day!

Or...well it's normal for your heart rate to be a little lower in the morning.  40 bpm lower?

I'm not buying it.  I told him we would do three more months of medication and if the picture doesn't change we start to see improvement than we either need a new doctor, a new plan...something but we aren't going to keep playing this game.  The doctor seemed okay with that.

Still...I'm not okay with it.  It's frustrating.


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Thursday, July 20, 2017

Abundance

Every day is full of surprises!

Every day, I have learned to find God in the most unsuspecting places.

Every day, I lay in bed and wonder how such a place of heartache and suffering can be so beautiful and sacred.

Last Saturday I was at Walmart with Shelbie and Sam.  I ran into an old acquaintance.  We were in the same ward probably 18 years ago.  She had a baby who was born with Downs Syndrome and I remember her grief.  Her husband held, what I perceived to be, an important position at the University.  They were very well known and very well respected in the community.  They were, by all of the ridiculous social standards, the perfect family.

When their son was born, it shook their foundation, as one could imagine.  I remember spending time with her listening and trying to help them cope.  They moved out of the area shortly after this event.

Saturday, it was good to see her.  She was with her son.  She came up to me and put her arm on my shoulder and said, "Do you remember me?"

Of course I did.  "I never had the chance to tell you that you gave me the best advice I ever received when my son was born."

"I did?  I'm not sure I remember what that was?"

"You told me it was okay to cry and how much love he would bring to our family.  You were so right!"

When we left, Sam couldn't stop laughing his head off and telling Shelbie..."Did you hear that lady? She said mom gave her the advice to cry!!"  Those two were laughing so hard..."Nice one mom!  Way to inspire people!"  We had a good laugh.

What they didn't realize is that this family was thriving in their perfection.  The community had set them above any realistic standard.  They were afraid to grieve when their entire world was looking at them and how they would manage this.

Saturday for me, was a really hard day.  My brief encounter with her was not by chance.  I needed to hear those words for myself.  When we got home, Spencer could tell I was struggling and said, "Mom, I think you need to go lay down for a bit!"

That moment was abundant with love, tender reminders from people so long ago.  Crying and sleeping was exactly what I needed to do Saturday...to just let out all the unspoken sorrows in tears. How beautiful that Heavenly Father saw fit to remind me of something so many years ago.  Incidentally, my friend is thriving!  I have always been so impressed with the way she handles her life.  She has spoken at many events that I have listened to over the years.

Yesterday, I got to go visiting teaching.  What a blessing it is to enter the homes of three sisters and share their load, their own personal challenges.  What a blessing it is to learn from each other and share experiences.  They each have their cross to bear, hard things they are facing, doing, experiencing.  It felt like an edge to lean upon...a place to rest;  holy moment when you remember why it is you do what you do and the divine creation of mothers.

When it was nearly all said and done, I got a call from a client.  I met with them at their home and was gifted an amazing, thoughtful gift of money, more than I could ever expect, imagine or felt deserving of.  I was speechless.  I couldn't speak.  I knew if I opened my mouth, a world of hurt would tumble out and it would be messy.  I don't like messy and honestly, I don't like being seen.  I thrive in living under the radar.  Without a doubt, God was in that overwhelming gift.  That money will help pay for the monitor for Shelbie, gas and food for all these trips to Salt Lake and maybe even, I will take my kids to a movie and not worry about how many extra hours I will have to work to cover the cost of fun.

We have so much, so many blessings each day.  God truly is in the details...even when it seems we are going under, he's there.





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Wednesday, July 19, 2017

All That Life Requires

I feel like this title should start...

Captain's Log...

Because, seriously, we are knee deep in uncharted waters.  It's been an interesting week thus far. I've been living my life from as far off on the fringes as one can get and still be somewhat engaged or at least appear to be engaged.  It's an art I have come to perfect!

It is an intriguing place to be.  I have become an expert in being unhinged from the emotion of it all yet, at the same time, side stepping my way into the issue and poking it with a long stick because I can't believe this is all real but then without warning, the tears can burst forth and I can't even really name one single thing that upsets me...it's just the combination of it all.

I find it so fascinating to keep a distance and watch how we are all dealing with this latest news.

For one thing, we have yet to talk about it.  We are the highest functioning picture of dysfunction you will ever meet!  Hands down!  Corner on the market...special...we give new meaning to dysfunctional.

Shelbie hasn't talked about it.
I won't talk about it.
Sam has been busy moving home and finishing finals...which I completely forgot to help him move and clean his apartment! As for Spencer, he has been the most proactive about things on his own.  He has been doing some research and determined that we all needed to start the Ketogenic diet, known to help with seizures.  He has been very rigid in his quest to start this diet; certain that it is the key to fixing not only his problems but Shelbie's too.

I don't think this is going to be the best diet for us really...one day of him being on it and he was about to pass out!  He had a car full of girls waiting for him and I had a house full of men trying to move furniture into my basement that didn't fit...and he is barely able to stand and in a panic about what to do.  I was a bit scattered and said, "Spencer, seriously!  Eat something!  You need carbs!  I went to the kitchen and the only thing I could think to grab was an unopened bag of chocolate chips.  I pushed them into his hands and said, "Eat these!"  I'm not even sure his response but he slipped out to his car and I didn't see him again until midnight.

We haven't started the medication...I have a million excuses why we can't start it until Monday.  For one thing, I have to find a new cabinet to put all this medication in.  Our IV supplies are out of control and spilling out of their assigned place.  AND...there is a 25 page leaflet the pharmacy gave me on the side effects of this medication.  It freaks me out.  The most common symptoms actually sound a lot like dying!

We haven't talked about the whole issue of driving privileges.  I wish the doctor would have made a clear statement about that.  Now, I have to be the one to take it away and enforce it.  How does a young adult with a thriving business that requires travel...get to her appointments?

I have not been watching her as closely as I was instructed to.  In fact, I am doing the opposite.  When I think about how dramatically life is going to change, I get anxious and upset and I feel so much trauma from the past.  This is not to say that when I leave for meetings, I am not scared to death of leaving her alone because I am but avoidance of all those feelings is the name of the game.  I am so good at avoidance, I completely forgot to start her transfusion this morning so I'll be starting it now...another long night.

I am doing what I do best...running.  Running away from all these hard things, refusing to address any of it, making excuses, hoping it will go away.

I just don't know where to start.  I don't know how I am going to continue taking care of my kids.

Every so often, I mention to Shelbie, "You know we have to talk about this diagnosis.  It's going to be a hard talk but we have to do it."

"I know.  Not today."

So, for now...we are getting by, dealing with things individually the best we can.  Honestly, we are so distant, distracted and completely in-congruent and I feel the undertow so very close to the surface.  I have gone to great lengths to be aloof and unaffected by it all but the tears are so very close so I run even farther from connecting with anyone or anything.

I'm not ready to accept all that life will soon require of me.  I still can't really believe that I have to watch my kids go through this.

In a moment of irony, University Hospital called me tonight while I was visiting teaching.  They left a voicemail as they do...Spencer's heart is awry...when they see a certain pattern of rhythm, they call me to find out what he is doing and basically, if he is still breathing...which clearly, they know better than me since they are watching his heartbeat in real time.  Spencer is in Utah tonight.  I don't even have it in me to call and see if he's okay and his computer base that goes with his  heart monitor is at home so without his device beside the base, I can't even download the information they need to look closer at the event.  There's always an EVENT around here!  Sheesh!

We need to get through cardiology this week and Saturday, I'm hoping to get a little clarity at the temple while I'm there and maybe take a deep breath.  Shelbie's monitors should be arriving soon and that will be the next big thing to figure out.

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Monday, July 17, 2017

Untitled Part 2

I guess this post is part 2 of our Neurology appointment from last week...

In addition to the news of the seizure disorder, it was confirmed that Shelbie has a large benign tumor in the left temporal lobe of her brain.  I have never quite understood how a doctor can look at a brain tumor and say, "Well, don't worry about it."

Really?  Because how is that possible? It makes me kind of mad...well, really mad and part of me feels like I should have gotten mad about 25 years ago when it didn't make sense my SIDS baby continued to live...can you really call it SIDS?  And night after night for 2 years of monitoring when she couldn't maintain a normal heart rate or respiration rate...I wasn't suppose to worry about that either? And febrile seizures don't happen at 99 degrees...

I guess after letting this news settle in for a few days, I am now circling around to the anger side of grieving.  This is the ugly part of the process.  This is where there are no earthly answers for the questions I have, apparently.   It's kind of a baron place; lonely. Where you really want to pin someone to the ground and scream at them all the otherness you feel until they feel what you feel. This is not my favorite place to be.  But welcome...glad you could make it to the madness.

Anyways... I'm done with the phrase "Don't worry about."  So, I asked her to explain how a large brain tumor in the left side of the brain is nothing to worry about?

She explained that if you have to have a brain tumor, you want one in the 'Nevada' parts of the brain, not the 'New York' parts of the brain.  Shelbie's tumor is in Nevada; there is stuff going on but not important brain function.  I can't help but think that God surely, didn't just throw in parts of our body that have absolutely no good use or maybe he did.  Maybe he threw in a bunch of extra brain tissue so there was plenty of room for important stuff and brain tumors.  Smart guy!!

 We are still waiting to be scheduled for the PET scan of her body and brain to see if there is new growth in the Nevada Tumor and make sure it hasn't invited 'friends'.   They will also get another look at her dwindling white matter, the hippocampus damage and the AVM, they think they saw which could really cause some stroke problems.

We also discussed more about Shelbie's Flattened Pituitary Gland.  Again,  a few months ago when I heard about this, they said, "Don't worry about it, it isn't causing any problems."

So, again, last week, I said, "Tell me again how an empty or flat pituitary gland isn't causing problems when God designed them to be a completely different shape than flat?"

"Well, she is fine, that's why."
"She's not fine.  She's been on thyroid replacement hormone since she was 5 years old."
"Because she has Hashimoto's Disesase."
"How do we know she actually has that.  No one did any ultrasound, imaging, they just saw that she had zero thyroid hormone at age 5 and made assumptions.  How do we know she has no hormone because of her flattened pituitary gland?  How do we know her hot flashes aren't also caused by this?"
"Ahhh...you have a point. I didn't realize they hadn't worked her up for Hashimoto antibodies."

She wrote orders for a ton of blood work but it was such a seriously difficult appointment to get through that by the time we left the exam room, we were both shell shocked and Shelbie refused to walk down to the lab and have a blood draw.  She just needed to get out of there so that testing will have to wait until the PET scan.

Since her leg is still swollen with more enlarged lymph nodes, we are back to the question...does she have lymphoma now?  Again, the PET scan is also being ordered to rule that out.  Seems like this will be our yearly dilemma.

I am fully expecting that blood test, when we get it, to come back normal for Hashimoto's.  I know in my gut that her pituitary gland is faulty and the cause of her thyroid problem...in fact, I am willing to bet someone money that I am right.

This week, we have another trip to Salt Lake...Spencer has cardiology.  I sure hope my temper simmers a little because I am so tired of getting the monthly reports from his monitoring telling me that his heart was without a beat for 8 seconds, twice in the past month, his heart rate was 250 bpm another time and in the next 10 seconds dropped to 22 bpm...but let's continue to observe.  I'm so done with the run around!  We have plenty of proof that his body cannot regulate his heart rhythm. It's just time for a pace maker or defibrillator.  They have no clue how difficult it is to live like this. No clue.



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Saturday, July 15, 2017

Blissful thinking

This has just been a week of stuff...lots of hard stuff so it only seemed fitting to finish things off with a trip to the dentist.  I hate the dentist.  I have always hated the dentist.  I will always hate the dentist.

I had to have a root canal.

I figured I could either be upset and cranky and whine and complain or try to make the best of it.

So...I tried to make the best of it.

I am not very good at taking care of myself and I'm especially not good at asking other people to help me take care of myself or take care of anything really so, when the dental assistants ask if I need anything, I always say, "I'm fine."

Not yesterday.  Nope. I am a tired and cranky woman, on Prednisone, with an abscess in my ear to boot!

Just before I left for the dentist, I dug through the sofa cushions to find some left over Valium.  I was really intent on making this a good experience! They say that attitude is everything!  It's not what happens to you, but how you choose to deal with it that matters.  So, I was going to put these positive affirmations to the test!

My dentist office is really a happy, cheerful place.  I actually like the people who work there, they aren't into shame and guilt techniques like most dental people are.  I really get annoyed when I go to a doctor or dentist and get shamed because I only flossed two days before my appointment!  Seriously, that has happened.  It sent me to therapy for like 3.5 years!

When they asked if I wanted the lights dimmed...I said yes.  When they asked if I wanted happy gas, I said, "Yes PLEASE!"  But then...she said, what flavor of gas?

WHAT??!!!

Is that a real thing?  YES it is!  So of course, I chose Pina Colada!  And the mask was the same color as my outfit so that was a bonus!  I put my headphones on with my Classical tunes to lower my heart rate and brain waves; Bach with Ocean sounds...Happy Gas with Pina Colada flavor and this dental appointment was already looking up!

My dentist is really smart because after I  was all gassed up, a soft pillow under my head, the lights dimmed, he sends in the finance girl to tell you the cost of the procedure and get consent.

"Hey Kath, so today's visit is going to cost you $27,000.00 does that sound okay?  We will need payment in full before you leave? Okay?"

Me: "Alright!  Sounds good!"  That sounded horrible actually, but what do I care?  What's another $27,000 in the grand scheme of things? She didn't say when I had to leave so I assumed it might be alright if I just laid there for  10 or 15 years on happy gas until I had the money to pay my debt and go home!  In all seriousness, I felt my blood pressure rising at the thought of paying for this so I simply said, "Do you mind turning the gas up?"  Life's too short to worry about money at the time of a root canal.

The other reason I love my dentist is that he is always a little behind.  That just meant more time to spend on my little imaginary island getaway.  It was working out well for me.  As luck would have it, the hygienist that got me numb was amazing!  I didn't feel a thing!  I'm being serious here.

Finally, things get started, he puts these foam blocks in my mouth so I don't even have to work to keep my mouth open and it's going so well.  A girl comes into our space and tells the doc that some old guy came in with a chip in his gold crown and could he take a look. I assumed he was an old guy because he had a gold crown.  Gosh, how much do gold crowns even run?  I bet more than $27,000!

 My dentist said how he really needed to get me done first.  Through my mouthful of stuff, I said, "donnevnworygohelthguy."  (Don't worry, go help the guy.  I'm not in a rush....that's what I said.) because of course, I'm really enjoying Pina Colada gas.

He comes back...then another walk in...then he leaves cause I said he should really take care of her.

There was one little problem.  This prednisone and antibiotic crap I'm on is making me retain water like crazy!  I had this suspicion that as soon as they lay me back, I was going to have to pee...and that is what happened, so every time, he left, I was up.  The first time, the assistant said, "Here, let me take the paper bib off."

"I don't care!  I have absolutely zero pride left." and I stumbled my way, falling into the corners of every doorway till I reached the bathroom...that's the valium, happy gas combo working.

"Are you going to be okay?"  She asked

LOL...I am such a weirdo.  Might explain why I'm still single.

He comes back and says how super patient I am and he so appreciates me being such an easy going patient!  And, they comp my happy gas bill because I was so accommodating so I call it a win/win.  I was there over 3 hours but who cares.  It was a little slice of paradise. The best dental experience of my life and I can't wait to go back!!

Today...what I wouldn't give for a little pina colada happy gas!

Tomorrow, I will finish posting about the crappy news this week, cause...there's more I didn't get to.

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Thursday, July 13, 2017

Untitled...

I have had a lot of time to think about what to title this post.  I'm still undecided.  Here are some options...

Testing...
This is just a test.
Full Circle
Redemption
The wonders of God
Missing pieces
Borrowed Time

Shelbie had her neurology appointment yesterday.  About a month ago, a nurse called to tell me our neurologist wanted to see Shelbie.  That has rarely happened, that a doctor calls me to see my kids, so there was no hesitation in my response.

We waited over an hour and a half for the doctor to get to our room.  We kept occupied with Snapchat filters, GIFs and stupid Memes.  Everything seemed funny but I had the worst gnawing feeling that all that was about to change.

The doctor came and in said, "So, how are you handling this latest development and do you have any questions about Epilepsy?"

She was talking a mile a minute and describing in detail how she arrived at this diagnosis.  "Any questions?"  She paused to ask.

I remembered one time, I was on a hike and the side of the mountain was feet and feet of loose shale.  I remembered that feeling of trying to claw my way up but never quite making it from the spot I kept sinking to.  And in that moment, I was clawing my way out of her words to find something solid to hold on to, something that had more undertones of hope than the word Epilepsy.   I remember looking at Shelbie as if from the wrong end of a telescope, though her face was less than a foot from mine.  Her eyes fell distant across the room. We both struggled to stay in the moment.

I looked at her with the most intent look of wonder, "I'm so sorry!  I don't even know what you are saying right now! What are you talking about?"

There has been a glitch in our MyChart.  She sent me a note after she had held a special meeting with a selected team of Neurologists who all specialized in a different part of the brain.  They all reviewed Shelbie's scans from the past year.  They all had time to make their own assessments.  One doctor realized that no one had checked the volumes of the Hippocampus.  He took it upon himself to do that as well as study in more depth, her PET scan from last March when they thought she had lymphoma.

That is where the evidence was found.  She has asymmetrical volumes in the Hippocampus...the deepest part of the brain.  This is the tell tale sign of deep brain seizures and explains why the EEG is always normal...it only measures the first 1" of brain activity.  There were hypersensitivities as well, indicating that brain damage has occurred.  He confirmed a large benign mass in the left temporal lobe, a couple of enlarged lymph nodes, what they think is an AVM- venous malformation as well.

Our doctors note to me explained all that.  I was never notified and even going through all her charts, the note was never there in MyChart.  So, she thought we had already been living with this news but it was a complete shock.

Shelbie has not had strokes or TIA's, she has been having seizures.  They suspect that she is having multiple seizures a week, even a day.  The episodes when Shelbie is awakened in the night, unable to breathe is a seizure with loss of consciousness.

So...It's been a hard day.  I can't even bear to say the 'E' word.  Technically, her condition is called Complex Partial Seizure Disorder.  They happen in the Hippocampus, the area responsible for respiration, heart rate, memory, co ordination and the autonomic nervous system.

This, in and of itself is hard news.  It's hard for anyone to get this news and all day, I have thought about this.  It has consumed me.

Last night, in the darkest hours before the sun came up, I looked up to Heaven and with a pleading kind of sorrow begged to know how I was going to manage this; how we were going to manage this? Without hesitation, Heaven answered back..

'You have been handling this.  For 25 years, you have been handling this and you will continue to handle this and I will continue to lead you along with the same Angels I have sent to protect her on this journey so far!'

I can not argue with that!  The only thing that has changed is now we know, what we haven't known...it has a name.

My heart is so full of unspoken sorrows, awe and redemption.  It isn't just about a name.  The mind is a powerful thing.  No matter how hard you try to keep a peace within the stirrings of holiness and answers and heavenly understanding, it runs amok.  It drags you into dark places you shouldn't be, without permission, without regard for the havoc it will leave behind.

I have journeyed through Shelbie's life today.  I have relived every single puzzling moment that has now fallen into this place that finally makes sense.  It's like looking at a macro picture of an everyday object yet seems like nothing familiar until you expand your view, pan out...and then you see the whole of it.  Ahhh...a recognition.  An Awe kind of moment..."So that's what that was!!"

Today, I was in those late night moments when she was just two weeks old and lifeless in her bassinet.  I heard my voice, screaming at her tiny, angel face to just come back.  Please come back to me!  I felt my throat burn and tears streamed down my face and it was a trauma just as fresh at was in the moment so long ago.

Today, I felt the compression of her ribs under my hands as she lay on a concrete floor in the basement of some house in the far off country, how my air filled her 2 year old lungs. How I cried between breaths.  How my head was dizzy.  How Spencer, who was stirring in my 36 week pregnant belly seemed to anxious to get out.

Today, I saw how the lights of the ambulance chased their way along the thin walls of our mobile home when she was four and how Spencer tried to catch them as they moved across the wall of the living room where his sister was unresponsive.

All day, memories that I have tried so hard to care for at a distance, came pouring out and it has been hard.

Today, I wanted to scream at all the people who have ever doubted me, accused me, could never understand how deeply sad this journey has made me.  Today, I remembered how the social worker wanted to put video tapes in my house because how could these children be so sick under my care.  Today, I remembered the dietician and her accusations that I didn't feed my children.  Today I remembered the friends who walked away because there was always someone sick.  Always something traumatic.  Today I remembered each and every person who said I needed to stop chasing problems.  Today, the hurtful words both spoken and unspoken from a myriad of people who said I was making this up, molehills into mountains... played like an unstoppable reel in my head.

Today, was redemption.  Today, there was beauty for ashes...oils of healing in the suffering. Today, all the persecution I have faced, the friends who left, the doctors, the social workers, the husband, the people who were suppose to care but could only criticize...Today, they didn't matter to me anymore though my heart aches for them all the same; but it still aches for me.

I guess the important thing I came up with today is that Shelbie is a work of God.  Evidence that we are here with a plan and a purpose and no creation or destruction of man will ever trump what God can do.

Today, I am reminded that God is a God of lasting miracles.  He has preserved and protected my daughter until science could catch up with us.

Today I am reminded that God has carried us so far, even on borrowed time, breaths from Heaven, angels round about.

Today I feel unworthy of His blessings.

Today will be counted as one of the holiest of holy moments I have felt.  Today, I am overwhelmed.

Today, I have lived and felt every word to this song by Hilary Weeks, He'll Carry You

He knows your heart
He knows your pain
He knows the strength it took just to simply breathe today
He sees the tears that you cry
He knows your soul is aching to know why
He hears your prayers each humble word
When you said you couldn't face another day he understood
He knows the path that you will find
Though you felt alone he's never left your side


Chorus:


He knew there'd be moments when no earthly words
Could take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you
He'll bring you peace and leave you hope
And in the darkest night he'll comfort you
Until you know the sun will rise and each new day
You will have the strength to live again


Chorus:


And when there are moments when no earthly words
can take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you
He hears you when you're crying in the night
He hears you when your soul longs to find
Till the morning will come
And the light of the dawn reassures


Chorus:


That in the moments when no earthly words
can take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you

Today, I lived and felt every word of this song that I love so much! 


I am grateful for a Father in Heaven who has stayed close today. There has been no human to see what I have seen today, to have walked where I have walked or to know what I have gone through and am going through.  There are no earthly words to take away my sorrows and that is okay.

Remember, this place was circled on a map long ago.  The Beloved has knelt here waiting for us to arrive and arrive we have.  I think we will sit here for a moment and rest.


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