Tag Archives: Glioblastoma Survivor

Grace – Our Afflictions Eclipsed by Glory

We are two months short of Mike’s 6th year past diagnosis.  My very first blog post stated “I hope this blog ends up being an awesome testimony of God’s healing and restoration.”

I haven’t posted many updates lately.  I’ve been in a place where I just couldn’t see purpose in all of this anymore. I didn’t feel like it was worth it anymore. Not feeling like you have a voice or purpose is an awful feeling. Especially since I’ve always been such a big advocate of HOPE.  I reached a place where individually I felt like my life was somewhat hopeless and was being wasted. I didn’t feel like I was living fully anymore, I was simply going through the motions.   I didn’t even know what to hope for anymore if I did dare to hope for anything.  To put it simply, I’ve just felt like a mess and was hurting a lot.

As I’m typing this, things have changed for the better since the darkest of the days.

I’m trying to figure out what I’m supposed to share, when, how and where. I’m not sure if I should be writing, speaking, etc. But I do know that I’m not going to sit back and let this past 6 years be for nothing. I’m not going to stop believing that there is purpose in this hardship. That I have purpose.

Many have heard 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in your weakness” But I want to back it up to 7 and 8 where Paul speaks of the thorn in his flesh, a messenger of satan, to torment him. Paul pleaded three times with the Lord to take it away from him. How many of us have something that TORMENTS us? I know I have had many things in my life that I BEGGED God to take away. God’s response was not to take it away. God said “My GRACE is SUFFICIENT for you, my power is made perfect in your weakness.”  I will be the first to admit that this has been a season of weakness for me. But Grace. My afflictions eclipsed by His glory.

I will never forget sitting in front of my husband’s oncologists office in 2012 wondering what we have done wrong to be facing a terminal cancer diagnosis. Certainly a good Christian would not be diagnosed with cancer. Certainly this is a direct result of sin. I opened my bible app and the verse that day was John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  He never promised that we would have an easy life! He actually TELLS us we WILL have trouble! He DID HOWEVER, promise us GRACE. Grace can get us through all circumstances.

As simple as that sounds, its not always something that feels attainable. I don’t want to mislead anyone into thinking I have this all figured out. Being a caregiver is hard.

God’s grace shows up IN OUR WEAKNESS. IN OUR HURT. IN OUR BROKENNESS. IN OUR IMPERFECTIONS. IN OUR MISTAKES. God’s grace can eclipse all of that!

Grace allows us to still have thankfulness, to still have joy, to still have peace…even in the midst of our hardest days. His grace and forgiveness washes away even our biggest mistakes.  Or maybe sometimes Grace just realistically looks like “Hey, I survived today. I had patience today. I had peace today. Well, maybe not even in every moment…but I was those things when I didn’t think I could be.” I think we sometimes have a hard time really comprehending the big picture. For me personally, when I think of Grace….I think of surviving moments that felt helpless. I think of coming up for air when I felt like I was drowning and didn’t have the energy to even tread water. I think of the days I was able to remain calm and patient when everything around me was spiraling out of control. 

My husband was a Marine for 21 years. Two years after he retired, a month after our youngest turned 3, he woke up one day severely confused to the point that he could not even function. He had taken Thursday day off work to blow bubbles with our youngest daughter before leaving the next day on a business trip to Japan. He was really confused that morning though. He was looking in the fridge for his socks and said he needed help getting dressed. I knew something was wrong, so I loaded the two of them up and went to the ER. Initially they realized he had no right peripheral vision and they ordered a CT Scan. They found a mass on his brain and ordered an MRI. That night we spoke to a brain surgeon and were told that we were going to stay the night while they got his brain swelling under control and then we should go home and get our affairs in order and prepare for him to have brain surgery the next week.  The doctor suspected it was a high grade cancer. To make a long story short, he was diagnosed with Glioblastoma which has a prognosis of a weeks to a few months with no treatment, or maybe about a year WITH treatment. People don’t survive this cancer generally speaking. Less than 4% live to see 5 years past diagnosis.

Mike went on hospice in January 2015. While he was on hospice, our 15 year old became pregnant. That entire situation was a huge lesson for me on grace. How to give it and how to walk in it.  In Dec 2015 our grandbaby was born while Mike was still on hospice. After a year and a half on hospice, Mike was removed.  He is much like a dementia patient as he struggles with self care and memory. He requires 24 hour supervision and assistance. Through all the struggles, all the stress, all the overwhelming moments, God’s grace has sustained me.

God’s grace is bigger than our mistakes. And have I ever made mistakes.

God’s grace is bigger than our brokenness.  And I am the first to admit I’m broken.

God’s grace is bigger than our mess. I am a mess at times. I’ve made messy decisions…I don’t have all this figured out quite yet.

God’s grace is bigger than our PAIN. And let me tell you, I’ve experienced pain this year. All the emotional pain of the last 6 years hit me hard and took me on a downward spiral. I can’t be the only one who has experienced this. Nothing specifically changed on the outside, but on the inside all of a sudden I just felt Raw. Broken. Hopeless.

At my lowest, as God always does, he swooped in and saved me… Again.  And I have a feeling He will do this again and again and again.

The Session this week is called “Call it Grace” and those three words are what inspired this entire blog post. Log into Facebook and check us out April 21st at about 7pm Eastern time and hear more about the life saving power of grace.

 

 

 

 

 


Christmas Baby!

I am sorry that it has taken me so long to update. Things have been crazy, as you can imagine. I’m so proud to announce that our Grandbaby was born on December 25, 2015!  She is 3 weeks old and we all love her so much. The labor and deliver went smoothly and our daughter was amazing throughout the whole process. I was able to be in the room for the entire labor and delivery because my sister, brother and law and mom all stayed at our house to take care of Mike and the other two kids. Another cool fun fact is that they came home from the hospital ON MIKE’S BIRTHDAY!  What a birthday gift!

As you look at these photos, I hope that you see God’s grace.  I’m so proud of our daughter for choosing life.  Becoming pregnant at 15 was overwhelming, but God’s grace has really been present through this entire situation.  We are closer than we have ever been as a family and we have more joy than we have ever had. I am devoted to guiding Kayla in  motherhood and making sure this sweet baby is loved and provided for. We’ve got this.

Mike was able to meet his grandbaby in the hospital and I will share the video that captured him meeting her. The very last few second is the best.

Another exciting fact is that this month we celebrate that Mike has been on hospice for TWELVE MONTHS!  Praise God!  He is 43 months PAST GBM DIAGNOSIS!

Caralyn Elizabeth Emmons born December 25, 2015. 7lbs 2oz, 19 inches long.

 


 July 2015 – Glioblastoma Survivor  

 I woke up Wednesday morning to a private message from someone praying joy, peace and supernatural energy into my day and praying for calmness and a pain free day for Mike.  I saw that prayer answered as we made it to church as a family that evening. It’s still rare for Mike to get out.  Most days this week he has slept until evening at least. Overnight was rough Tuesday night. He was awake hourly saying he wasn’t ok and that he was feeling bad and his head was hurting pretty bad. I thought for sure he would sleep all day to catch up on the rest. But no, he was up and wanting to be busy. The prayer of a friend in the morning did make a difference! 

When we do randomly get out to church, it’s the best feeling to be welcomed with open arms and lots of love. I’m thankful for all the people in our lives who simply love us when we can show up and continue to pray for us when we don’t. 

    
   

  
God continues to show me the miraculous healing and restoration that has taken place in our lives. 

I don’t doubt the blessings in my life for one second! Yes, Mike’s cancer is so much harder to deal with on so many levels than I could ever even try to explain. Some days I feel spent and broken. But at the same time, even on my broken days, I’m stronger than ever. Mike’s bad days are bad but his smile is genuine and his love runs deep. 

My heart feels like it gets ripped out of my chest almost daily….but there is joy even in the midst of all the hardships and heartache.  

Even in the trials and tribulations, we are thankful to be living an abundant life. 

 
Speaking of JOY, I just realized that I haven’t announced this on the blog yet,…..our teen daughter is expecting a baby girl and she is due Dec 30th. As you know, our daughter is 15 so this was a huge shock, but we choose JOY and we choose LIFE.    We choose to embrace this new little life  ….So there’s that. 🙂  This photo is from a gender reveal party that I threw for them to find out the gender. All the pink confetti revealed to them the gender!  


Glioblastoma Update

Mike is such a fighter, he always has been.  He perseveres even on the hardest days and he is steadfast in his fight for life.  I know that hospice can be a wonderful resource but Mike refuses to consider letting hospice come in at this point. I understand and I fight right along side him even on the days when I feel like we are flying blind and I have no idea what to do.  (Do we call an ambulance, do we call a doctor, which doctor – oncologist or primary care, do we wait it out at home, what if something happens and I wish I would have taken him to the hospital, but what if he gets admitted and wants to come home – he felt like a hostage last time he was admitted)  I feel like we are being propelled at a million miles a minute some days and I have no idea where we are going to land.  Its a scary feeling.

We opted to not do Avastin at the last appt and to instead focus on trying to get his blood pressure lowered.  Avastin is contributing to his dangerously high blood pressure and he is having a lot of swelling.  We will see the doctor again and possibly do the Avastin infusion this week.

Since the Duke trip he has not left the house for anything other than to see the doctor and once for church (which ended up being way too hard for him.)  Even though we’ve had some bad days, we have had some really great days too. The great days aren’t over.

I have been working on some custom jewelry for The Creative Bond and it has been such great therapy for me.  I will have more Brain Cancer Awareness jewelry ideas that I will be adding.  I will be adding a keychain too!   I’d really appreciate everyone heading over to “like” the facebook page to show support and share it with friends. 🙂

I don’t know if this Etsy shop will be something that I will do for awhile, or if its just a temporary distraction from everything else that is going on.  But for now its something to do that is giving me a distraction and giving me a creative outlet.

 


GBM Reality

I have never heard anyone with this diagnosis ever say “It gets easier.”  Yet, when Mike was first diagnosed, we just kept thinking “If we can just get through this storm…”  We have been on this GBM journey for two years.  I am thankful that God put someone in my life that walked this journey out already and that could open my eyes to the reality of this diagnosis. It has allowed me to plan for the unpleasant details.  I’ve tried to remained hopeful and positive, but this journey never got any easier.  People often say “I don’t know how you do it.” “I can’t imagine.”  Honestly, it is an impossible situation and I don’t know how we do it and I still can’t imagine even how we will get through each tomorrow. I definitely don’t take any credit for being strong or for getting through it.  Because it feels impossible to face some of the things we face.  But we do somehow get through the days. 

I can’t remember the last time that Mike had an actual visitor….someone who came just to sit and talk with him.  In the beginning we were in absolute awe of all of the support we had.  Thinking back on it, I am still so very thankful that we didn’t have to walk that season out alone.  I don’t know how I could have faced such a big new scary journey without all that support at that time.  Many people made a difference.  I’m thankful for the dinners, the prayers, the financial donations, the visitors, the care packages.  It was awesome.  I don’t let this lonely season steal the joy that I still feel about all the people who did so much during that season.  I focus on the bright sides, and I focus on the happy. It has been over two years now and peoples lives have gone on, that’s just the way it goes.  I guess it only makes sense that people make their own families and their own lives their priority.  I guess I just assumed that we would be a priority in there somewhere as well sometimes.  I’ve realized that I have who I need.  Maybe not who I expected or who I wanted to stick around, but I have a handful of people who go above and beyond.  For that I am thankful.

There is so much pain on so many levels with this journey.  In the online support groups, I see that loneliness with this is very common.  People are very hurt that the friends and family who they were so sure would be there, just aren’t there. So if you have come across this blog feeling lonely, I hope you find some comfort.

We serve a God who is always there, always loving, always ready to comfort.  That’s what I know.  I don’t feel it all of the time, and I don’t know why I don’t feel it all the time.  I’m not claiming that with God its all rainbows and butterflies, because I have too many very painful and very lonely moments with this beast of a cancer that has slowly stolen so much from my family.  I’m struggling right now, but that doesn’t change the truth of who God is, even if I’m not feeling it.  

Yes, we still have memories we are making.  But so much is already gone.  I have grieved deeply over many milestones of what brain cancer has stolen….milestones in the wrong direction.  When I feel like I can’t face another day of this, I just remember that many people don’t have that one more day.  Each day of hardship is worth another day with him.

I’ve always been big on sharing our journey, but I’m not seeing any reason to share details at this point.   So this post isn’t really an update at all.  I never in my life could have imagined how hard this would be. 

This blog post feels like a whole lot of nothing, but so many random people come across this blog via google, so my hope is that it does something for someone.  Sometimes I feel like I’m talking to a wall with this blog, but then I look at the stats and see that it has had over 25K visitors, so it must be doing something.

 


Glioblastoma Battle Update (May 25th, 2014)

Today, my blog post will be a compilation of some facebook posts and some thoughts I’ve saved in the last couple of weeks but only saved and didn’t share.

May 15, 2014

Mike had an MRI on my birthday because he had shown a significant neurological decline. The MRI, however, shows no significant growth. The tumor is still there, and it is still bothering him. His headaches and confusion are pretty bad from the pressure. The brain damage is still something we try to learn to deal with everyday. From what I understand, the radiation that he had to his brain daily in Sept/Oct 2012 can also cause these dementia like symptoms and they can come on worse over time. When you are given this diagnosis and told there is no cure, but that treatment will prolong your life, you choose to prolong your life. It’s the quality of life issue that the doctors didn’t really discuss with us or explain.

 

May 17, 2014

When Mike was healthy, we worked as a team taking care of the logistics of life….now I deal with every single bill, make every decision, solve every problem, take all the responsibility… I really miss his brain working better and I really miss his input on so many of the logistics of our lives.  He can’t comprehend or process any of those details now. I’m not whining, I can deal, but keep the prayers coming for him. As long as he is here I will continue to have hope and believe in healing and complete restoration.  There’s a fine line between accepting what is or not settling for anything less than the promises of what you know God can do.  Somehow I cling to both. I strive for peace with today. Hope for tomorrow. He’s only been awake for a couple hours each day.  The weakness that he feels drives him crazy. As he spends more and more time in bed and feels more and more sick in different ways, I wonder how much worse it can get…and then it gets worse. That’s kinda the story of our lives the last two years. …Just a few things to prompt some specific prayers from my friends. We serve a mighty God. Nothing is impossible. Medically, a healing might not be probable, but it doesn’t mean it isn’t possible.

 

May 18, 2014

He feels pretty bad daily and it’s hard to watch him as he’s losing that fighting spirit. Even the strongest of warriors gets tired at some point. Two years of a very aggressive battle and he’s still fighting, that’s huge.  He has told many people “I’m done.”  He knows that it is completely his choice to continue chemo or quit chemo.  We were told this is only prolonging his life, it will not cure him.  When it comes down to it, he says “I can’t do that to the kids.  I have to fight for them.”

 

May 21, 2014

I’ve attempted to update on Mike but I have no idea how to put into words his struggle. He’s fighting so hard and I don’t know if it’s the brain cancer, chemo, or after effects of brain damage from the radiation, but he’s having to really push each day to just get out of bed. Two years of thinking it couldn’t get worse, and it keeps getting worse. He’s lost about 70 lbs (since his highest weight during the summer of 2012 on steroids for the brain swelling) and he is really weak. He struggles daily with headaches, nausea, and fatigue to the point of not being able to function. Today his Avastin appt was an additional 2 hours for fluids because I was asking if it was possible that he’s dehydrated because he’s been so sick, and I guess I was hoping he’s been so sick because of being dehydrated. The dr said it wasn’t likely that but that he’s give him fluids. Just pray for wisdom as we make decisions regarding his treatment. Don’t quit praying for miraculous healing and a miraculous restoration! None of this is anything new, it’s all been a constant battle. It just seems like he’s not having very many good days. He has a couple of good hours sometimes, like this past weekend, but it takes him days to recover from just a couple of hours out. It would probably be easier to deal with this daily chemo if he felt like it was really doing something, but an MRI last week (on my birthday, the 15th, because of neurological concerns) showed that the tumor has not shrunk at all. Granted, he’s had this recurrence a year without growth. That’s no small feat when you are up against Glioblastoma. This update is kinda a whole lot of no new news, but I wanted to share something and remind everyone to pray for him.

 

May 24th, 2014

I spent the day at the ER with Mike. He had a few things going on. I was having a hard time controlling his pain for about 24 hours at home with Percocet and I was concerned about his lungs with his recent coughing, so we went ahead and went in. The CT Scan showed a severe infection, and the chest XRay came back clear. One stressful part is not knowing what to do and when, so I am thankful that we ended up at the ER today instead of spending another day at home trying to manage the pain on our own. Mikes pain came across as a tooth ache (but he pointed to his face when I asked where it hurt, even after the max dose of Percocet) and he wanted to see a dentist. After talking to an emergency dentist about all of Mike’s health issues, we decided that an ER doctor could help us best, (and save us a couple hundred dollars today) even if he did need an antibiotic for a tooth issue because a doctor could also prescribe that if they saw an obvious tooth infection. It turns out, the infection that showed up on the CT Scan is what was causing the face/head/jaw pain, not a tooth issue at all. The ER doctor did some labs and then talked to Mike’s awesome oncologist office to make sure the treatment plan was the best one for him all around in his circumstance. He’s taking a strong antibiotic for the infection, and was given a stronger prescription for pain. Some prayer requests…obviously, pray for Mike to have some relief. Pray for me to have endless patience as I take care of him and the kids. Praise God that this issue is being resolved and that He gave me the wisdom and peace to work it all out today. Praising God also for an amazing friend and Mom that helped with kids today. I had some divine appts today…one was with the ER doctor that first found the mass on Mike’s brain, one was with a nurse who’s 3 month old baby girl was just diagnosed with a terminal illness, and another was with a couple of pharmacy techs who had a lot of questions about where I draw my strength from. (I’m in there weekly and this was the first time they asked personal questions about Mike’s diagnosis and then they asked how I cope.) I haven’t had cell service all day because I never have service in the ER part of the hospital, but I wanted to share an update…even though its very jumbled. I’ve had a long couple of days trying to manage Mike’s pain and I simply don’t have time to update people individually. I knew I had time to update everyone at once on here before I have to get back to Mike, and its not even a very important update. Its just another day in the life of a brain cancer family. Lately it seems like we always have one battle or another to tend to. Thanks for all the prayers this week!

 

May 25th, 2014 (Facebook post)

Happy 5th Birthday to my sweet girl. She deserves such a better day than I was able to plan for her. Mike has not been steady on his feet since this picture was taken on Friday before her preschool graduation. I had a chance to snap a few photos with her in a field of flowers. Photos sooth my soul. This morning started off a little chaotic as he fell and was unable to walk unassisted, he is so weak. For her birthday, I’m sure the biggest gift would be for God to give her Daddy supernatural strength and energy to be really present for her day. I wasn’t going to overshadow her birthday on facebook with him being sick, but then I realized that real life right now is that her Daddy being sick really is overshadowing her birthday. Her favorite thing to do is crafts, so I think I will get off here and get some praise and worship music on, pray for her Daddy, go do some birthday crafts with her and give her lots of extra snuggles. Pray for wisdom that I know what to do and when for him today (if he needs another ER visit, but I realize this type of status is no surprise to my fellow brain cancer families that have gone before us and that sometimes there’s nothing the ER can do. I realize there is a path that just has to be walked, so prayers in that area for wisdom are much needed. I’m praying that we hit a fork in the road where God’s supernatural power overtakes the situation and creates a new path) God is mighty and more powerful than any cancer. God can heal him and restore him. At this point, I do not have the emotional energy to update people individually with phone calls or texts. I don’t have any answers regarding his health. I don’t know what is going on and I will do my best to share updates here or the blog. Updates here make more sense anyways, because if I attempt a phone conversation, I just can’t get my thoughts together to give any details.

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Glioblastoma and Brain Fatigue

I have a couple of things to share today that will hopefully help others understand Mike a little better.  These things are not something that I wrote, but things I came across from other brain cancer warriors.  People don’t seem to understand why we don’t go to Sunday morning church often anymore, out to restaurants or friendly get togethers, and why we try to limit visits to short visits.  Too much stimulation is so hard on him.  If you are around our house, you will notice that I try to keep Kenzie busy with a lot of crafts and outside play when the weather is nice, and that the teenagers spend a lot of time in their rooms –  this is me adapting the only way I know how to give Mike the silence that he needs.  Even the smallest disagreement between the kids, or even them interacting, having a lively conversation and giggling, or simply the noise of opening the fridge, getting a plate, going into the silverware drawer, and opening a can of soda is too much for his brain.  It is hard for a teenager to get scolded for “making too much noise” when they are just getting a snack.  We adapt, but its been a learning process for all of us.  We are all trying to work together to make the house as quiet as possible for Mike during those times that he needs quite.   He feels a lot of pressure to be “on” when people visit, so too many hours in a day, or too many days in a row are hard on him. Having visitors also brings Kenzie’s energy and excitement level up, and that is a stress to Mike.  Its so hard to explain as this is new territory for us.  We aren’t saying we don’t want visitors, we are just saying that we have to go about having visitors in a new way and we are having to communicate exactly what Mike needs and we hope that everyone understands and doesn’t get offended.  For him, it isn’t just a matter of getting a good night of sleep to recover from a busy day.  He often ends up in bed for days straight if he has too much stimulation. He can usually enjoy a good 4-6 hours awake and then his brain starts to get fuzzy.  I’m finding that I have to be his advocate in so many new ways.  So, onto the info that I found and want to share…..The rest of this post is in another brain cancer warriors words, but it really is a great verbalization of what Mike is going through.
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“Brain Fatigue vs Physical Fatigue

Our brains get tired!!!! For us with brain tumors, and the damage from the tumor and the treatment, it makes it VERY difficult to do the normal “thinking”. “Normal” people THINK about things easily. For us brain tumor patients, it is like a mental marathon just thinking about what to buy at the grocery store! So it is our brain getting over stimulated that causes us to break down and be fatigued. Our brains just shut down!

After keeping a journal of my good and bad days, I realized that my bad days, were I feel like a veggie, is the day after I have a busy and noisy day! My brain needs to recover. Like a person after running a marathon race needs to take a break to recover their muscles. We brain tumor fighters need to recover from over working our brains! We will lay on the couch like we are warn out, because out brains have shut down!!!!

SO don’t be surprised if your loved one is still all fatigued and tired, even thought the radiation and chemo is over! They will be that way the rest of their life! It is “brain fatigue”, not physical fatigue from chemo. The KEY is to learn how to work around it!!! I have realized I have about 4 hours a day of “sharp” brain function, then it goes down hill fast. So if I want to be perky and thinking straight for a dinner event some evening, I need to make sure I have a VERY quiet relaxed day before that evening, so I can have the perky energy and brain function to talk and be part of the event. If I go grocery shopping (which takes a lot of thinking and background noises), then I would be a veggie that night at the event.

My hardest days are the weekends when my two boys and husband are at home with me all day on Saturday and Sunday. I LOVE being with them and having fun, but the busy sounds of talking, doing, interacting, thinking, noises from my boys, etc. WEARS my brain down. Monday is recovery day for me! I NEED hours of complete silence each day! So please you caregivers understand, that your loved one needs some QUIET time each day to give their brains rest!!! We are not “normal” anymore! We will not get back to “normal”.

Sometimes I need to “do” something in the morning, like go to a kids event at school. If I do, I need to come home after the event, and have COMPLETE SILENCE for a few hours to recover form the over stimulation in my brain, so that later that day when my husband gets home from work and boys from school, I can be functioning again that evening. Like I said, I think many patients (or caregivers) don’t realize that our brains are fragile!!!! Treat them gently!!! We can only handle so much “thinking” in a day. ANY background sounds, over stimulation, big groups of people talking, etc. is way hard on us!!!

In the past I often reacted to my “over stimulation” by depression, wanting to be alone, not wanting to interact with other people. But now I realize that I fell into the fatigue and feeling bad, because I was “allowing” myself to be over stimulated too much! Now I have learned to work with what I’ve got, and old warn down brain. So by giving me my QUIET time needed, my brain and body can work MUCH more perky and clear, the hours I really need it.

–This was posted in a gbm support group by Cheryl Broyles

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My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

If I seem “stuck,” my brain may be stuck in the processing of information.  (It may also be an indication that I need to take a break.)

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

–Author Unknown