Happy Anniversary

It is somewhat weird figuring how to say what I am feeling when it comes to celebrating 22 years of marriage to  Thad. The past couple of decades has been quite a roller coaster of highs, lows, twists and turns. Though nothing can ever prepare you for the challenges that come with a brain injury.

Before taking Thad to neuro rehab today, we were talking about the goodness and greatness of God and His sovereign fingerprints all over our relationship from even before there was an “us”. I started to share a favorite memory and that blank look came over Thad’s face – the “I don’t remember” look …

A brain injury isn’t picky about the memories it takes or the memories it leaves behind; the skills that are remembered intermittently; the words that either can’t be formed or just can’t be spoken. There isn’t a timeline to follow and fully healed/fully recovered most often doesn’t resemble back to normal.

Thad looks like a very scruffy grizzly mountain man version of himself with really cool shades – there isn’t a visual or evident injury except for a slight scar on the front of his left ankle to say that anything even happened. In public, we get odd looks when I take the walker out of the car for him or or when I need to read something to him that he can’t make out. Short and light conversations you can’t tell anything is different – and then a question is asked or certain letters start the word that he wants to say or there are multiple people involved and he can’t keep up …. a new version of reality.

Different though not bad. My husband is alive. My husband remembers me. My husband is grateful. My husband is working hard to get better. My husband wants to get physically better to get rid of the walker, to drive, to ride his bike, to help. My husband loves me and I love him. I thank God for keeping my husband alive on October 12th and every day since. I have absolutely no clue what our future holds for us but God does and that is the biggest thing to celebrate. God has a plan, its perfect, he loves us and that is way more than enough!

Let God

January 2017

So much change …. My inner control freak is fighting to come out and I seriously just want to get out of the way and release any and all control!  I think I am doing ok and then there is another change, another revelation, another something completely and totally unexpected.

I am a very structured and routine driven person and have resisted change for my whole life. God wants me to learn new levels of flexibility and adaptability – and I thought I had come so far …. Adjusting our schedule for Thad’s daily rehab was hard. It feels exhausting to need to make sure I am up and ready for the day let alone needing to help another person with self care and basic needs.  If I am running late, I can rely on dry shampoo, extra deodorant or even skip a meal – but I can’t skip someone else’s meals.

I didn’t realize how ingrained my habits were until there wasn’t time for them.  Normal went out the window almost 3 months ago and I am still trying to figure out how to take care of things. I want what I want when I want it …. I want to get rid of the unnecessary to-do lists and focus on what is important.  And honestly, I have kicked into some sort of numbed out survival mode, I don’t know that I can tell you want is really important other than loving God and loving others ~ recapture my servant’s heart. I guess that is my starting point.

God – help me to let go of all that I am trying to do … remind me of what is important.  Help me to feel again.  Help me to love others well. Show me the priorities in life so that the important stuff gets my time and attention. Help me make sure that those I love know they are important to me.

Romans 12:9

Don’t just pretend to love others. Really love them.

All for our Good and His Glory – even Brain Injury

So Wow!  This is not at all what I thought was coming and I had no idea what was going on in my hubby’s head. Praying that God will keep me present and protect me from all of the ways I am beating myself up for not doing a better job getting him help sooner.

I felt so overwhelmed that I did not know what help was needed or who to even reach out to right after the accident.  For the first several weeks, that was ok as Thad was unable to stay awake more than 4-5 hours a day and sleep was challenging with flash backs and dreams.  I made sure he ate, stayed hydrated, kept it dark, and just held him when emotions became overwhelming and prayed because our lives depended on it.  As he started staying awake longer, I stayed focused on activities the doctor said to do keeping the safeguards in place. For physical safety, I followed the doctors orders of not letting him be alone – ever.  

What I missed in the scenario became obvious when Thad was hospitalized the week before Thanksgiving.  During one of his many assessments, I heard his heart including the fears and the emotional roller coaster of the flashbacks and panic.  All of his emotions are strong and often overwhelming.  He will laugh uncontrollably for apparently no reason. He can be just sitting on the couch and start crying.  He often cries in his sleep as well.  All emotions can get intense quickly – laughter, agitation, gratitude, frustration – and he doesn’t know and can’t control it yet.   

He gets overstimulated very easily.  Too much of anything creates anxiety.  His brain gets tired trying to process large spaces, lots of sound, lots of people, lots of stuff.  This is most public spaces – including grocery stores – especially with Christmas sounds, lights and decor now up. He is typically ok in quiet conversations for a couple hours.  Attempting a meal out, we generally need to be done in an hour and then he is ready for a nap.

This also makes most any interaction challenging.  With one or two other people at a time, in person, at home, with soft light, he seems able to carry on conversations and stay present.  He has done 3 people a couple of times but tires more easily.  He can carry on conversations and sound mostly normal.   His humor is still very much intact.  He has some stuttering/hesitation and will forget words or maybe use the wrong word.  If he gets emotional or excited, he has trouble getting any words out.

I heard what he does and doesn’t know.  I had no idea he couldn’t even name the days of the week, months of the year, ABC’s or even count to 10.  When asked the month and year, he consistently says October 2015 as that is the last fully intact memory he has.  He has a few random event memories since then, but has strong emotional responses and then confusion because he doesn’t know why.  He also has challenges with short term recall.

He really can’t see much right now – mostly because he sees so many items – instead of one ball, he sees like 7 and he can’t focus his eyes enough yet to read books, though with very large print he is getting better at letter recognition.  He is not able to view screens – if he gets a phone call, I screen it and then he can talk on speaker as the phone can’t be up to his ear.  When he gets a text, I read it to him and then type his response.  He can’t tell the difference between keys on my key ring.  This is all kinds of fun with the light and sound sensitivity.  He is mostly ok with indirect natural light and low wattage incandescent lights behind him when it gets dark.  He wears his sunglasses or a complete blackout mask whenever we need to leave home.  He has constant ringing in his ears and so we can do instrumental music for short periods of time only.

His vestibular system isn’t working with his other senses.  His eyes and ears are needing to learn to work together again. He is dizzy and really doesn’t know where he is in space and can’t process the movement of others around him.  To go anywhere, he uses a walker and sometimes needs help with doors and figuring out doorways.  This makes riding in a car all kinds of fun as movements can feel exaggerated.  Our current max “distance” is about 30-40 minutes at a time and then he needs a break. I am finally grateful we live in the city – so close to doctors and therapists.

I didn’t know what he couldn’t remember – his memory has us living late 80’s to early 90’s.  So much of the past 15-18 years is spotty to non existent.  I showed him a picture of us with really close friends and he has no idea who they are.  He recognizes some people but doesn’t know names or relationships.  He knows me though we had to process through the relationship of wife.

He also shared the guilt he feels watching and listening to me trying to figure things out – with his work, with the police, with car and medical insurance …. Oh how I wanted to protect him from all of that until he was more ready to deal with it. 

We are in the process of building Thad’s mental stamina and endurance to enter a day patient neuro rehab program. He is doing outpatient rehab weekly and at home “exercises” daily.  His current focus is on vestibular therapy with some PT.  We hope to be able to incorporate some cognitive therapy next week.

This is our current reality – We may feel like he/me/we is going crazy – we have to remind ourselves this is part of life with a brain injury and God’s got it!

2 Corinthians 12:9

And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.

 

Happy Birthday to Me

I love celebrating birthdays.  I don’t care who’s it is – it calls for celebration.  Your birthday is the day that God chose to bring you into this world. He knew us before he laid the foundation of the universe. We are created in his image. We were chosen by him, created as his masterpiece, to do the good works he planned for us long ago … and I am struggling.

The person I want to celebrate with, the person I have celebrated with for 23 years doesn’t know it is my birthday. He doesn’t know Thanksgiving is next week.  He doesn’t know we just had an election.  He doesn’t even understand it is November.

But God knows.  He is perfect.  He has a plan.  He loves me. I can choose to celebrate that.  Thank you God for the reminder that it doesn’t have to look or be a certain way … I can celebrate with you!  Thank you for another year of life – may I use it to glorify you!!!

God’s Got Us – We simply relocated to the hospital

November 15-18, 2016

This is not what I thought my Tuesday would be.  We were supposed to be making appointments to start physical therapy.  We were supposed to be making plans to start taking walks together. We were supposed to stay on the upward trajectory for healing. And God decided Thad’s recovery path is going to look a little different.  We woke up this morning and all of the progress he has made over the past month seems to have disappeared.

He doesn’t know what day, week, month or even year it is … He can’t find words … He is in a lot of pain … He is confused and isn’t completely sure who I am … He can’t keep his eyes open because lights are too much and he now has ear plugs in as any sound seems to be too much too … He is holding on to anything near him as his world spins out of control …. I’m scared … all I can do is pray because God is way bigger than anything we are facing!

I am grateful we are at a hospital with doctors and specialists and a lot of medical tests and evaluations that are going to help him and hopefully be able to tell me what is going on and why … Yes, God’s got us and it would be comforting to understand what is going on!

Update #1: Geek Alert

The doctors here are incredible.  They are answering questions and truly educating us – me – on what is going on and what is coming.  For the first time, I think I understand … When Thad’s car was hit head on, it started a chain reaction in his head. The brain is made up of millions of nerve cells connected by fibers called axons. When Thad’s head was thrust from side to side and front to back, some axons—which carry messages between brain cells—were torn, twisted or just plain sheared off.  Then as the impact moved through the car, the kinetic transfer of energy needed to make its final release.  It shattered the water bottle in his cup holder and what we now know – parts of his brain exploded in much the same manner.

Dr. Newsome, the neurologist, is using the term Closed Head Traumatic Brain Injury (TBI) with Post Concussion Syndrome.  Some of the neuroimaging tests include magnetic resonance imaging (MRI), an electroencephalogram (EEG), and computed tomography (CT scan). She said the damage is there at the microscopic level and that these types of injuries to the brain’s axons usually will not show up on CT scans or MRIs. Radiologists will say the test results were in normal range.  She said we will know more about the parts of the brain damaged will come through OT, PT, cognitive and speech evaluations.  Oh my wow!  So much to take in …. God – help me be calm and trust you – you made Thad’s brain the first time and you know every detail right now!

Update #2:

Dr. Gurrapu, the internist, was pleased to see that Thad isn’t “sick” he is just injured!  This is a huge praise as there aren’t any – like NO underlying medical conditions that could complicate or create challenges for his recovery – Plexus for the Win! This opens up a whole new avenue for treatment moving forward.  There are some folks coming from a Neuro Rehab facility to help me understand what the next steps will be.  Ok God – I trust you – help me to not be so darn scared.

Update #3:

So Thad will be going to a place called PATE Neuro Rehabilitation in the near future …. there is no going “back to normal”.  Life will always be different and some of the changes in him may be permanent.  Too much to take in so I will attempt another update soon. God, I have to believe you’ve got this!

I love my husband

In an odd way we’re celebrating the past 3 1/2 weeks at the Arms home. A little shift here and a little tweak there and suddenly definitions, priorities and expectations have all changed.

If you know me at all – you know I love really deep hours long conversation …. I honestly believe communication is a love language. Thad is filling my tank with little things: his humor, a laugh, asking for help, sitting on the couch, coloring, holding my hand in mostly dark silence … Saying I love you and thank you with just a look that I knew was for me alone.

So grateful that in the midst of a lot of uncertainty and unknowns God is still on the throne …. And the cool part – I can curl up in His lap and dump, laugh, cry, panic, celebrate, and sleep.

This is a season for us to learn more about patience, trust, and just being in the right here right now. I’m getting better about accepting help and still struggle to figure out what help I/he/we need. Y’all His provision is so far beyond what any of us can comprehend! People praying; bringing toilet paper; providing meals; Plexus; laughter; friend’s shoulders; emotions … I am truly overwhelmed at just how much God loves us. It is the most incredible feeling to bask in peace that surpasses all understanding.

We had another doctor appointment today.  He is mostly where the doctor expects him to be and there is some progress. We continue to *wait* for God’s perfect timing for Thad’s complete healing.  We are both very quick to pray through the pain – both the constant daily and the spikes.  A few highlights:

  • He is still supposed to lay low and get plenty of rest. He is currently able to stay awake for 2-3 hours at a time averaging 6-8 hours a day. Coloring is good for almost 10 minutes before his eyes get tired.
  • He has not progressed to being left alone yet mostly because of the dizziness and vertigo.  We will be doing an MRI to see if there is anything else contributing those issues. No unassisted walking … He is grateful I’m the perfect size to be his human walker .
  • Still need minimal lights – think candles – lots of candles.
  • Still no screens and very little use of anything that plugs in or uses a battery – he did listen to the final few innings of the Cubs wining the World Series. He is beyond ready for the ringing in his ears to stop too.
  • Language is trying to get better so we are able to have more conversations. stuttering is the biggest issue. When he is tired or mentally exhausted, is when things tend to deteriorate.

I love you Thad! Thanks for resting your brain to get fully healthy again. Thanks for praying for us out loud today. Thanks for the smiles, tears and honesty as you make your way to healed. You are definitely my love no matter what!

God knows

I realize now that there will always be a before or after the accident.  Since I got the phone call, I have learned way more about myself, my limitations, and the limitations of this world. I have had a lot of quiet time with God. I have learned more about just how fearfully and wonderfully complex we are made. I have had a glimpse at the complexity of the human brain that is so far beyond complete human understanding.

God, I believe your promises! Please give Thad deep restful restorative healing sleep. Heal his brain and make every cell work the way you created it to and make every thought fixated on you and your absolute love for him. Build a hedge around us both blocking any of the fears either of us may have. Allow us to think only thoughts and dream only dreams aligned with your good pleasing and perfect will. Multiply our hours as if the earth is standing still. Let us both hear your whisper in our hearts. God, I have seen your fingerprints on so many situations. We are being sustained by the prayers of people all over the world that we know that also love Jesus. 

So much info and so little brain space. Thank you God for knowing our everyday before you formed us in our mothers womb. Thank you for choosing us before you laid the foundation of the earth. Thank you for comforting us and being with us always. Thank you for people that studied to know the big words and how to help fix it.

Y’all, Thad is still struggling with his injuries….the doctor said he should make a complete recovery and God knows exactly when. We are fully believing the promise of Phil 4:6-7. These are just a few of the things we are specifically praying for in terms of his concussion:

  • He wants desperately to be able to talk normally again. He is good for 6-10 minutes when he first wakes up – and then the words start to disappear, the stuttering starts, the frustration sets in, and exhaustion takes over.
  • He wants to be able to stay awake for more than an hour.
  • He wants the flashbacks to stop. He wants the nightmares to stop.
  • He wants to stop spinning – the dizziness keeps him from being able to walk on his own.
  • He wants the ringing in his ears to stop.
  • He wants to remember – it seems that years might be missing from his memory on top of not knowing “when” he is.
  • He wants the seizures to stop.
  • He wants to be able to focus on anything for more than 5-7 minutes before exhaustion kicks in.
  • He wants to go outside and bask in the sun or take the boys to play at the park but any light is still incredibly painful.
  • He wants to be able to see clearly and see only one version of what he is looking at.
  • He wants to be able listen to music instead of the ringing and other sounds he is hearing right now.
  • He just wants to feel more like his normal self again.

Thank you for joining with us in prayer!

God you are Good!

October 13, 2016

God, thank you for whispering in the quiet stillness all day to remind me that you are right here – holding us both and that there is GOOD in this no matter what. Thank you for making my ears work to hear Thad when he needed something. Thank you for an early Plexus payday to remind me that you are part of every provision we have. Thank you for making me ok in the dark. Thank you for words to tell Thad what a wife is. Thank you for friends that know you are are praying for us now. Thank you for your grace which is always sufficient. And thank you for the rest that is coming tonight even with the alarms going off for meds! Amen!

In an Instant

 

October 12, 2016

At 12:10p, life changed.  Thad was in a horrific car accident.  He was hit mostly head on by a guy in a big pick up truck that was trying to make/beat the light.  The other guy was going way to fast – well above the speed limit – and Thad was almost, if not completely stopped.

I praise God there is no bleeding on the brain though I am terrified that they sent him home from the hospital. (Why are they sending him home?  I am not even remotely medically trained!!!!) He doesn’t know what day it is, what month it is or even what year it is.  He is not capable of walking on his own. He isn’t supposed to be left alone.

The doctor’s are calling it a significant concussion with mild amnesia (Seriously!  How can they even use the word mild?)  They want him to go to bed and sleep for a few days to rest his brain – no lights, no sound, no thinking.  I have no idea what any of this means or what is coming.  He is drugged and asleep now.  They also said the coming days would probably be worse in terms of pain with the way the body responds to a high impact collision. Any and all prayers are welcome!

Choose Who You Will Follow

October 2016

Self indulgence has always been my down fall …. I mean seriously – who doesn’t crave comfort and ease. Yet God calls us to so much more – something that will be so much better. Growth is just a part of my walk with God. He doesn’t want me to stay stuck and small – He calls me to Grow Up!

I know there I things He is calling me to give up and yet I look at my hands and realize that I have a death grip on things I think I want!  This month is going to challenge me in ways I can’t even begin to imagine.  God has some really good amazing things in store for me – I simply need to love Him most.

Deuteronomy 6:5

And you must love the Lord your God with all your heart, all your soul, and all your strength.

There are some really fun yet challenging things coming my way this month … I am on a road trip to visit Wally in Tulsa then I will be growing as a leader at a John Maxwell conference the next weekend.  A bunch of other stuff happens and then we get to cap off all of the hard work from the summer at Plexus Leader’s Retreat. It is all part of the journey He has me on. I can joke about it – yet honestly I am scared of what is coming.  The process of growth is seldom easy, often messy and frequently painful.

I am choosing to walk into situations that make me uncomfortable – that will point out my flaws – that will help me grow – that will shine His light – that will give Him glory – that will help me see what my next steps are! I do have big goals and big dreams and friends that I want to accomplish these things with. I want to live in the wonder of possibility. I want to believe … God – Help me believe!

Ephesians 5:25-27

Jesus gave up his life for me to make me holy and clean, washed by the cleansing of God’s word. He did this to present me to himself as a glorious bride without a spot or wrinkle or any other blemish. Instead, I will be holy and without fault.

I want to believe that what God says to me, for me and about me is absolutely true. I want to live from that belief. That simple pure knowledge that God is for me and no one can stand against Him. God – this month – especially right now – I want to focus on you and you alone. Your path, your lessons, your victory!