Letter From an Anonymous Caregiver

I came across this today and it hit home in a BIG way!

Dear family and friends,

One of the classic problems for people with a serious brain injury and the people who take care of them is a shrinking support system. Once the immediate crisis is over, family and friends slowly disappear. There are many reasons why extended family members don’t help. They have families of their own to care for. They can’t miss work. They live far away. They no longer connect with the survivor — his impairments discomfort them. Or, they simply can’t be bothered to interrupt their busy lives.

When the person with the brain injury is high-functioning, like Michael, the extended family may see no need for help. He’s out of medical treatment. He walks, talks, and looks “normal.” Therefore, his recovery must be complete. So, why do you need help caring for him? This line of thinking often leads to the oft-used excuse for not helping, “You’re pampering him. Let him stand on his own two feet.  He doesn’t need help. He’s just lazy and irresponsible.”

Before giving up on the family, caregivers should try to educate their relatives about brain injury, in general, and about their loved one’s specific impairments. For many observers, a brain injury truly is invisible. They fail to see the full spectrum of physical, cognitive, emotional, behavioral, social, and/or communication symptoms that people with TBI and their caregivers deal with every day. It’s likely that only the principal caregiver recognizes that their loved one works diligently to appear “normal” to others. Only the caregiver sees him at his worst, at his most vulnerable. Consequently, those who don’t interact with the survivor often may honestly see no need for help.

The extended family may also not understand how much time and energy caregivers spend helping people who live with a brain injury. They may not see how much people with TBI depend on their caregivers. They may not see the sacrifices caregivers make to help their loved ones enjoy better lives.

For caregivers this is no time to be proud. It’s a time for a frank discussion about why we need help, why I cannot care for him by myself, and how you can help.

Research shows that being the primary caregiver for someone who lives with a serious brain injury is debilitating to that person’s health. Prolonged stress, fatigue, and neglect of your own interests and well-being, year after year, can wreak havoc on your physical and mental health. To remain healthy, every caregiver needs some respite from his caregiving responsibilities. A tired caregiver is a poor caregiver.

Since our moves from Arizona to North Carolina it’s been very difficult. Local friends help with small things, at times, but we really don’t know anyone well enough in our new community to ask for help with the big things. Frankly, I just haven’t had the time or energy to make too many new friends.

Michael recognizes my pain and exhaustion.  When I hurt, he hurts more. When I’m tired, he is more tired. Sometimes we talk about this. Sometimes, when I’m particularly upset, we fight about it. But, it’s not going to change.

I’m easily upset these days. I lose patience over the little things: trying to get out of the house on time, his not listening, his forgetfulness, and the fact that he is easily distracted when I'm trying to have a serious conversation with him.

Our life is only going to become more difficult as we age. Michael is a prime candidate for dementia and/or Alzheimer’s. He has been having balance difficulties lately and has nearly fallen a few times. There’s mounting evidence that brain injuries are accompanied by a variety of other medical problems and should be treated as a chronic condition with new symptoms appearing as survivors age.

Michael has become a different person because of his brain injury. He’s not the man I fell in love with, but I still love him dearly and more every day.  You’ve all spent some time with him and have seen some of his impairments. But you’ve never seen the full extent of his disability. You’ve never seen him explode with anger. You’ve never seen him get easily frustrated with the simplest of tasks.  You’ve never seen the purse exhaustion after even just a shower. 

From a distance, our life probably doesn’t seem that difficult to you. He doesn’t work.  He has all this free time. What’s the problem? Well, there’s a reason he can’t work. Believe me, there are few things as frustrating as having time, but not the energy nor the freedom from pain to use that time in an enjoyable or productive way.

Over the years, when asked by others for help, we’ve always responded favorably, with our time, our money, and/or just helping out. At times, when we’ve seen a need, we offered assistance without being asked. For the past year, I’ve hoped that at least one of you would call and offer to visit for a week.  Run a few of the errands so that I be home at a normal hour.  Take the kids for a weekend so the house is just quiet.  Send a gift card for a day at the spa so I can just be pampered for a day.  Have dinner delivered, even from across the miles. 

Thank you for listening, caring, and helping!

(adapted from a message written by an ‘anonymous caregiver’ to Brainline.org)

To learn more about Michael or to donate funds for medical expenses, click HERE for the Loving the Lyons Family YouCaring site.  

https://www.youcaring.com/medical-fundraiser/loving-the-lyons-family/304952

Entering the World of Clinical Studies....

It's been a lot of ups and downs over the last few months and I apologize for not updating more often. We have honestly just needed some time to process some things and tell family what we know and let it sink in them too.  But, it's time we update those of you who have walked this path with us.

So.....  here goes it....

Michael has been accepted into a clinical research study at the UCLA Center for Brain Injury and Disease for  Chronic Traumatic Encephalopathy (CTE).

So what is Chronic Traumatic Encephalopathy?  You may not realize it, but you've probably heard of it.  It's otherwise known as the "NFL Football Players Disease".  It is a progressive degenerative disease of the brain that has no cure and no treatment.  There are 4 "suspected" stages and the progression of it affects both the mind, and the body as it moves from stage to stage.  It affects cognitive function initially, but quickly moves into behaviors.  Things like memory, word finding, mood, temperment, staying on task, etc.  As it progresses, those things continue to decline, but the physical symptoms, like balance deficits, start to begin.  There isn't too much known about it, but there is a lot of research being done to help with diagnosing it and hopefully treating it, or slowing the progression and that's where this study comes in.

CTE is something that has came up a few times over the last year.  While a few of the doctors early on brushed it aside pretty quickly because he clearly had the Chiari Malformation and Spinal Pressure Issues, Michael has kept it tucked in his mind fearful that it is what he was facing and recently admitted he has thought it's what he has been dealing with for a few years now.  At an appointment with the neurosurgeon about 4 weeks ago it came up again, only this time the conversation quickly turned serious.  Dr. Wilson had Michael go back to the very beginning of his head injuries - pre surgery - pre migraines.  All the way back to the 7th grade when he had his first head injury, the 20+ documented concussions since then, the closed head injury in 1995 when an 80+ pound door fell on his head while working in Indiana, and then the explosion at the movie theater he was in back in 2006.  Add to that he had brain surgery....  while controlled.... it's more trauma to the brain.  He said (what we all were thinking) it just didn't make sense why nothing has worked to help him.  Dr. Wilson told us with the symptoms Michael has, the decline he's had physically and cognitively over the last year, and the images he's seen....  it can't be ignored and should be looked into further.  Shortly after that his records were sent to one of the only 2 universities studying the disease.  Not even 48 hours after they were sent we were contacted by UCLA notifying us that he was accepted into their clinical research study.

This Clinical Research Study is just that....  it's research at this point and is not a clinical treatment trial.  We will travel to California the first week of January to get this ball rolling.  Michael will see one of the neurologists, who works closely with the director for the study.  This is when we hope to learn more about how this all works as well as ask our hundreds of questions about CTE (there really isn't much out there on it!  Trust me...  we've looked!)  They will connect him with a neurologist here in Phoenix that that they will consult with after that so we won't have to go back and forth to LA too often.  The neurologist here will track his progress (or decline) and report it to UCLA.  The benefit of participation is that when (and I prefer to say WHEN, not if) a clinical treatment trial starts, he will be automatically included in it.

Michael (and I) have prayed all along to just KNOW what was wrong.  At one point he even said to a doctor "I don't even care at this point if it's a brain tumor....  I just want to KNOW!".  As scary and uncertain as CTE is and with the grim outlook it has down the road, we really are THANKFUL to know what the ugly beast is.  Sure....  it's been a bit of a tough pill to swallow.  It's been hard to let it really sink in that he may never be the way he was 5 years ago or have the energy/ability to hike through the Monongahela Forests again.  Or come to terms with grasping 5 years from now may look even worse than where we are today.  But at least we know what it is and don't have to listen to any more doctors tell him there's nothing wrong....  or worse yet tell him he just needs to see a shrink (yes....  this really happened!).  So....  we choose to be thankful!

This leads us to the prayer requests....

- That there would be a clinical treatment trial implemented soon and it would move quickly to a full treatment for ANYONE who suffers with CTE!
- That Michael would just have the strength and energy to enjoy each and every day through the holiday season!
- That we would be able to get to California without financial worry and stress of travel expenses!
- That our kids just remain innocent and happy through Michael's struggles and not be worried about what tomorrow will look like!
- That on the hardest of days, we would continue to be thankful and have faith that this is all part of God's plan for Michael's life.
- That we would be able to stay firm in our faith and not waiver!
- And that in the end, Michael would be fully healed and restored with ALL of the glory going to God!

Again, we continue to thank you all for your love, support, and prayers along this journey!

"Now to HIM who is able to do IMMEASURABLY more than all we ask or imagine, according to HIS power that is at work within us, to HIM be the glory in the church and in Christ Jesus throughout all generations, for ever and ever!  Amen." - Ephesians 3:20-21 (NIV)

Something on My Heart....

Looking back to fall of 2012 when Riverview Church was still a small group of core team members, we would meet weekly and make plans for the how and when we were to get here, to Arizona.  Each week we would go through prayer requests and they always included things we "needed settled" before we were able to move here.  Jobs to finish up, houses to sell, school years to finish, people to say goodbye to, find a job here, etc.  I remember thinking one night that those are earthly things and sure, they are important, but are we following God's call for our lives if we wait to check off the "must be done before we can move" boxes on a list?  Some might say that if it truly is God's plan for our lives that the house would sell, a job would fall in our laps, etc.  But what if that's not the case and what if that's NOT how God wanted us to follow him?

Matthew 4:19 we are told "Come, follow me," Jesus said, "and I will make you fishers of men.".  Proverbs 3:6 goes a little further saying "in ALL your ways acknowledge Him, and He will make your paths straight".  Doesn't this demand a boldness in faith on our part when you are called?  To take a step, even with uncertainty, showing him that you are willing to follow His lead so He can use you for His kingdom?  Maybe that boldness in faith is moving before the house is sold.  Maybe it's leaving friends and family behind even when you think you need them the most.  I believe that when we do, in bold faith follow Him everything else will fall in place.

The other piece of the whole moving here process that I think about a lot is really, what choice do we have other than to follow Him in faith when He calls?  Aren't we warned in Matthew 7:21 "Not everyone who says to me, Lord, Lord" will enter the kingdom of heaven, but only the one who does the will of my Father who is in Heaven?".  I don't want to be facing him at the gates of Heaven and hear "I asked you to follow me, to serve others, to share my Word and to trust in My ways....  but you did it your way....  you didn't do it in faith...."....  you get the idea.

I think about the Hobeck's story.  I don't want to share their entire story of joining our team (it's their story to share), but just a few things about it.  Jim and Jenni truly felt that God's plan was for them to be here...  this became clear to them after FIGHTING it for months!  After finally realizing that it was God's plan for them, they, like others in our group, started making that checklist of things that had to happen before they could come....  house to bed sold, job to be found, school year to end, find new house.  After praying over it for several weeks they suddenly realized that were doing things THEIR way and not God's way and that might be part of the problem.  That is when their boldness and pure faith started....  Jen flew out here to Arizona in the spring and ended up signing papers to buy a house before theirs was sold in North Carolina...  before Jim found a job and ended up moving here before they closed on their house in North Carolina.  Talk about risky!  Was it risk though?  Or demonstrating boldness in faith?  They held on to faith through it all and that faith proved true!  Not only did their house sell in North Carolina, Jim finally found a job (after being here a month) and got his first paycheck on the very day that was the deadline the bank gave in order for the builder to finish their new house here!  It was so cool to see it all unfold and for their family to be blessed for their faithfulness!

Like I said in the beginning, we still have friends back in North Carolina who are part of our team and not here yet.  There are also a few families who God has truly put on my heart and I feel they are part of our team and just don't know it or haven't acknowledged it.  There are also a few families who were part of our team who have decided not to come at all for various reasons.  I pray every day for them all...  that if it truly is God's calling on their lives that they would feel convicted to just act on faith and be bold. That they wouldn't wait for the job to be found or the house to be sold.  That they wouldn't stay their because they can't leave their family for one reason or another.

Every day those North Carolina families aren't here, or every day that you aren't acting on whatever God is putting on your heart to do to follow and serve Him, someone is missing out on seeing God's love through you and YOU are missing on on seeing God's kingdom grow!

Be bold.
Act in faith.
Be blessed.
And watch God's kingdom grow!

Happy 21st Birthday, Devin!!!

Michael Devin Lyons

June 12, 1993

5:31pm

9 pounds 6 ounces 21 1/2 inches long

Let's see if we can go back and remember how that day went ... oh ... wait ... it actually started two days prior!

Thursday June 10th I had the WORST back pain I could have ever imagined!! I suffered through it all night long, not realizing it was actually contractions! Mike reluctantly went in for his third shift schedule - I assured him I was fine! When he arrived home Friday morning I was still miserable. He stayed awake with me to be sure I was ok. Little did he know he'd be needing that sleep that he should have had!

Later that afternoon it got so bad that Mike called the hospital. The advice they gave was to have me lay on a heating pad set to low. So - that's what we did. NOT SMART! Within 15 minutes of laying on that heating pad my water broke and I was in the worst pain - now realizing it was full blown contractions! I jumped up yelling - terrified I was going to electrocute myself on that heating blanket!

Mike came in the room to see what the fuss was about and he immediately freaked out! In the prenatal classes - he saw the water break, then the baby come. He thought we were having that baby right then and there. He grabbed the phone, called the hospital and I'll never forget what he said - "HER WATER BROKE! THE BABY'S COMING NOW! WHAT DO I DO?!?!" I'm sure the nurse on the other end was laughing! She calmly told him to put me in the car and drive.

I got in the car (Mike's new car I might add) and with every contraction more water came! I'll spare you the details - other than the fluid was full of meconium and his nice new car seat was now covered in it! That 10 mile drive to Paulding Hospital felt like an eternity! By the time I got there we were told that I was dilating quickly and we'd have a baby by the time the night was over (this was Friday, June 11th)

They were half right ... I dilated quickly and began pushing sometime around midnight. But - by morning there was still no baby. Devin was posterior, face up, and I was small in the hips (ok - stop laughing now!). They started talking c-section and I refused. I kept pushing for several hours (and literally broke 2 of Mike's fingers!), and only after the baby's heartrate starting getting irratic did I start to consider it. By now - it was noon on Saturday, June 12.

When I finally caved to the c-section - we found out that my doctor, a small-town family doctor, was not certified to do a c-section and the only surgeon for Paulding County Hospital couldn't be located! I could keep trying while they kept trying to locate him, or I could transfer to a different hospital. The decision was made to transfer by my husband and family.

I layed there - in full labor - pushing when I could - until after 3pm while they made arrangements. By now - Mike had been awake since Thursday night at 11pm . . . over 30 hours! I went via ambulance, he and my parents followed. For whatever reason the doctor chose not to stop my contractions - - - YIKES!

I arrived at Defiance Hospital shortly after 5:00pm - was rushed into surgery (by now the baby had low oxygen because of the cord being "pinched" with me trying to push). They quickly put me under general anesthesia as Mike was brought in and at 5:31pm we had our first child.

Now - the story isn't completely over! We were told at our very first ultrasound half-way through that we were having a girl! We picked out the name Kelsey Rachelle. When I woke up after surgery I remember seeing Mike beside me holding a baby with a big smile on his face. I said "can I hold her?" and he said "no . . . but you can hold your son instead!".

We spent about an hour together holding our son, picking a name, and then my parents made sure Mike made it home safely to sleep after being up for nearly 36 hours.

Hard to believe it's been 21 years! We are very proud of you, Devin!  You are fine young man and bring such joy to your lives.

We love you much!

Love Mom and Dad!

26 Years Ago Today..

I met my wonderful husband! Here's how it happened . . .

My parents took my friend, Katie Steele, and I to the Strawberry Festival in Payne, OH. It was a small-town street fair type thing. Katie and I were told to be back at my Dad's car no later than 6pm. Well . . . being the girls that we were - we were still on the basket ride at 6pm! We got off and ran like crazy towards the car. While running - I literally ran over Mike! He kind of laughed - and then followed us to the car trying to talk to me the entire time. He did manage to get our names - thanks to Katie!

At the time - I remember thinking how creepy it was for him to follow us the way he did. Katie, on the other hand, had an instant crush on Mike! Off we went with my parents as he stood in the parking lot watching the car until we were out of sight.

A few days later - HE KNOCKED ON MY DOOR! Somehow he figured out who I was and where I lived! (Probably with the help a family member in law enforcement!) Again - I thought - this boy is CREEPY! We talked for a little while and he left. I called Katie - who thought it was the sweetest thing ever and she hoped he was on her doorstep!

The next time he came - my Dad said that I should at least give him a chance because of the trouble he went through! I reluctantly agreed and went out with him. Little did he know - that the boy who "stalked" his daughter would eventually be his son-in-law! His charm and personality had me hooked from that first true date!

(As for Katie - she was furious with me . . . but, she eventually got over it and we are friends still doday...  26 years later!)

I Lost My “Gibbs” This Weekend.

This weekend my Grandpa Eschbach died.  The funny thing is, I don’t believe that I ever, not even once, called him grandpa…just Norm, good ol’ Norm.  You see, biologically speaking, he wasn’t my grandpa, he was my step-grandfather.  He became my grandfather when I was 16 and my dad married his daughter Judy, almost precisely 26 years prior to his passing.  He had actually been in my life for much longer, I just didn’t know who he was.  My entire childhood I constantly saw him uptown at restaurant, the gas station and at church, but I really only knew him as that “short, funny guy”.  I can hear his distinctive laugh in my head as I type this, I’m really going to miss that laugh.

I believe that he understood exactly what a handful his daughter was facing when she decided to take me on as a son, and he operated behind the scenes to do his best to try to keep me in line.  On a regular basis his technique of choice was a slap upside the back of my head that varied in force depending on my transgression.  That’s right, long before Gibbs was delivering “DiNozzo slaps” on NCIS, I was catching them from Norm.  He wouldn’t deliver them around other people and he would always catch me when I wasn’t expecting them and then follow it up with a talk about what I did to bring it upon myself.

I’d like to share a quick story from my life for those of you who may not have been lucky enough to have known Norm or maybe witnessed his incredible paternal side. 

When I was still only 15, Norm helped me get my first job.  He knew that I was looking, and told me that he would put in a good word for me at the gas station uptown.  He and the owner were good friends so having him behind me was good enough to get me a few hours a week to prove myself.  I worked up there for a little less than two years and it was where I got the majority of my early slaps.  Usually, he would just stop in to talk and pass the time, but he would regularly stop in to give me a slap and discuss one of my issues that he had heard about.  Several that I don’t even think my parents knew about that he had heard through the grapevine.  For lack of a better way of saying it, my tenure at the gas station ended in a very unceremonious manner, and left many in my family embarrassed and in a very uncomfortable position with the owner (Norm and my dad, in particular).  I avoided Norm to the best of my ability for weeks afterward.  One day at the grocery store I was stunned by an unexpected and rather forceful slap to the back of my head.  Sure enough, it was Norm.  He gave me a look that set me back another couple of steps, and then he very gently led me into an empty aisle.  This is all that was said:

Norm:  Are you sorry?

Me: Yes.

Norm: Are you making this right?

Me: Yes.

Norm: Good.

…And he just walked off.  The topic was never brought up again, and he treated me just as he always had before the incident.  I caught many more slaps over the years, but they became fewer and farther between over the years.  Somewhere in my early 30’s they stopped completely.  I guess he finally though that I had my crap together enough not to need them anymore.  In all honesty, I missed them.

I was initially looking for pictures Norm by himself to put at the top of this, but what I discovered should have been obvious all along.  There are no pictures of Norm by himself.  Norm never alone.  He was always surrounded by friends and family.  He loved to talk, to listen, and most importantly, to laugh.  The only thing more difficult to find than a picture of Norm alone would be one of him not smiling.

Norm was 97 and lived an incredibly full life.  While he will be missed by everyone, I hope that this week will be much more about celebrating his incredible life than about our individual mourning for our loss. 

Due to my illness, I will not be able to attend the celebration of his life this week, and it pains me deeply to have to miss it.  My hope is that those who knew him will read this and smile understanding the love that Norm had for everyone and that those who did not know him will wish that you had.

I love ya Norm…Grandpa.  Though you’ve physically left, your example, love and laughter will be with me forever, and if I ever feel a sudden gust of air at the back of my head after I’ve done something stupid, I’ll know that it’s you giving me my slap.

---Michael

What Not to Say

Lately I've had a few people say one thing or the other in regards to Mike that have rubbed me the wrong way.  Now...  I totally get that they mean well and I admit that I'm a bit over protective and over sensitive.  But, the words still sting.  After hearing one today...  "at least it's not cancer"...  I decided to make a list of things not to say and came across a few good articles and other blogs on the subject.  I compiled them and these are the ones that stick out to me.

1.  Just think positive and you'll feel better!

This is like saying that he's not doing enough or trying hard enough to get better.  Believe me....  if he could feel well, he would!  He has tried everything from medication, exercises, biofeedback, prayer, positive feedback, and pretending he feels 100%.  Sadly...  it doesn't work.  If it did... he wouldn't be sick.

2.  You don't look sick.

Why not just say "what you have isn't real, it's just in your head".  Chronic illness is often hidden.  Unless you live with the person and see it day to day, it's not obvious that taking a shower fatigues them for several hours making it difficult to even get dressed.  With Mike, after a shower and morning routine he feels like he's ran the Boston Marathon!!

3.  God only gives you what you can handle. 

Telling someone that God picked them to suffer does not help at all.  Period.  One blog I read said that a better option is to just say you'll pray for calm and peace.

4.  You look terrible.

You're right.  They often do look terrible.  Sometimes they have to pick and choose what they spend their energy on.  For Mike...  one of those thing is not shaving on a regular basis or taking the time to press his clothes before he gets dressed.  And honestly...  I'm ok with that!

6.  I know how you feel, I had a bad migraine for 2 days last week.

OK...  Guilty!  Not going to lie!  I have tried very hard NOT to complain to Mike when I have a headache.  But the truth is, I have no idea how he feels because I've not had a headache every day for the last 9 months straight with little relief.  And, my headache hasn't impacted my social life, professional life, emotional life, sex life, etc.

7.  Well...  at least it's not cancer.

Someone said this to me today about Mike.  It was HARD to bite my tongue and not lash out!  Yes, I am glad he doesn't have cancer!  But he is struggling with many of the same things cancer patients struggle with.  Nausea, sever fatigue, weakness, depression, anxiety, fear, frustration, pain, etc.  AND...  this comment also sounds like he should feel guilty for feeling sick when there are others who are "more sick" than he is.  Illness should not be ranked.

8.  At least you get to stay home and relax all day.

I guarantee if you say this to Mike...  you might want to duck!  There are a million things he'd rather be doing and work is at the top of that list.  Followed closely by attending social functions, playing volleyball with his daughter, playing basketball with his son, hiking the mountains with our friends, going out on a date with his wife...  the list goes on and on.

9.  I'm sorry.

Chronic illness is not a funeral.  This condolence just seems a bit out of place.


Now that I've given you the "thall shall not" list...  here's a few things you CAN do or say.

• I'm not sure what to say, but I want you to know I care.
• How can I learn more about....?
• How can I help support you and your family?
• What is important for me to know about your illness?
• Is there anything you want to talk about?  I'm here to listen.
• How can I help you be more comfortable?
• How can I help your day go smoother?
• How can I pray for you?

If you've already said something that may have stung someone, simply apologize and try again.  They'll understand and be grateful you cared enough to apologize.

Helping to Carry the Cross

(This is not an easy post for me to write and it comes after many tears and much prayer.)

Mike has been sick now since last July...  9 months and counting.  After much discussion and encouragement from his medical team back in September, he (very) reluctantly realized he would not be able to work in the capacity he used to and would need to file for disability.  It crushed him and one night I just held him as he had tears in his eyes apologizing to me because "this is not how it's supposed to be".  It truly was one of THE hardest things he's ever done.

Fast forward...   About 2 weeks ago you may have seen that I posted on Facebook his disability application was denied by the Social Security Administration.  It stated "while your disease process significantly limits you and makes it difficult for you to have gainful employment, you are able to do simple tasks".  Gotta love it!  We were warned that the first application would more than likely be denied and we'd have to appeal, but we were very frustrated regardless.  Our attorney filed our appeal last week and advised us that the whole process could take up to 18 MONTHS!

While we are very thankful to have health insurance through my work, we have now been down one entire income for 9 months.  And now, we're told it could be up to ANOTHER 18 months before some of that income is replaced.  The copays, coinsurances, deductibles, over the counter medications, travel to and from Mayo, and living expenses keep adding up and the burden has become difficult.  We have been praying about Mike's illness and the financial impact it has had on us daily, several times a day even.  Just pleading with God to show us the way, show us how to just "make it" from week to week and to show us encouragement along the way.  Some days are harder than others...  but we keep pressing on.

Last week was Easter.  I spent a great deal of time through the week reading about what Jesus went through for us, how he suffered and what that suffering meant for me.  One verse really stuck out to me and as I've prayed about Mike this week it just keeps coming back to me.  Luke 23:26 reads "As they led him away (Jesus), they (Roman soldiers) seized Simon from Cyrene, who was on his way in from the country, and put the cross on him and made him carry it behind Jesus.".  You see, even Jesus needed help carrying His cross in crisis.  Jesus didn't say "No, I can do it myself!"...  he humbled himself and when he couldn't carry his cross anymore someone helped him.  How relieved he must have felt to have that heavy burden lifted, even for just a short while.  As I pondered this, I realized that if Jesus needed help carrying His cross...  we can admit when we need help carrying ours and I began to pray about that specifically.

Last October, dear friends of ours in North Carolina held a garage sale/silent auction benefit to help us get Mike to Colorado for a consult with a leading surgeon.  Along with that benefit, this website was set up for those who couldn't make it or wanted to just donate directly.  We both had forgotten about it and Mike even though that the site was taken down after the benefit,  But, last week we had a random notification that someone wanted to privately donate.  (Coincidence?  I tend to think not.).  We went to it and looked, and sure enough, it's still open through the end of July.  It is now updated with new information on how Mike is and where things lie with his plan of care.

As always, our biggest need is prayer,  I believe that God is still a God who performs miracles and can heal Mike completely, restoring him 100%.  But, if you are able to and have a desire to financially contribute, you can do so through the YouCaring page and know that the funds received are helping to ease the burden of treatment related expenses and the debt it has generated.  Also, if you feel led to do so, please share with friends and family and ask them to pray about helping.

We thank you for walking this path, and praying with us along the way!

11 Years....

I can't believe it's been 11 years since the day Mom left us.  It was a beautiful Palm Sunday morning...  much like today.  Shortly before 10am she was surrounded by many of her family...  my sister and I, her siblings, her parents, my Dad's sisters, and my father holding her hand tightly.  We were all telling her we loved her, we would be ok without her.  They were the hardest words to ever say to the woman that we never wanted to let go of.  Finally, when we let our guards down, my Aunt Jeanie started talking about a singing, dancing, hamster gift and we ALL started laughing hard.  Probably the first laughter in that house in several days.  It was then, at 10am,  that Mom opened her eyes for the first time in about a week, looked at us, and then left this world for a world of no more pain or suffering.

Not a day goes by that I don't think about Mom.  She was my best friend, my first teacher, my confidant, and truly my hero.  I can't say that it ever gets easier to be here without her and I miss absolutely everything about her.

A wonderful friend once told me each day without her is a day closer to seeing her again and being reunited at the side of Jesus.  That is the promise that I will hang on to!

Jeremiah 31:13(b) - "I will turn their mourning into gladness; I will give them comfort and joy instead of sorry"

What a Week!

Let me start by saying, while some may do it differently (even Mike at times) or not agree with sharing so much, I choose to be transparent about what Mike is going through because there are SOOOOO many people out there like him who suffer each and every day.   If reading about his story helps just one person be able to get help they need, then it's worth it.  The journey he has had with Chiari Malformation, Intracranial Pressure, Hydrocephalus, Syrinx's in his spinal cord, and the pain that comes with it has not been easy and is so misunderstood by most doctors.  But we have learned that sharing and talking to others who live it too gives us hope that all will be well if we just keep pressing forward.

Now...  for the update...

What a week!  It started Monday when Mike woke up feeling not well AT ALL!  He was experiencing dizziness again, was way off balance, hands and feet were numb/tingly, and had yet another massive headache.  He was either about to have an "event" or he had one overnight.  We just happened to have an appointment that morning with his seizure doctor at Mayo so I wasn't too concerned, I knew she'd assess him there.  The ride to Mayo was AWFUL!  On more than one occasion I thought we were going to have to stop (it's about an hour drive) because his dizziness was so bad.  In the parking lot at Mayo he took a Meclizine in hopes of stopping the world from spinning around him and we slowly made our way up to 5W.

We knew going into this appointment that she was likely going to put him in the hospital for some more intense seizure monitoring even before the way he woke up.  We prayed about being able to make a decision on whether or not to do it the night before in group.  After Dr. N saw Mike and talked to us a bit about how he's been she gave us our options...  continue to wait and see (which clearly wasn't working and he couldn't hide that from her) or an inpatient stay.  She really felt that the inpatient stay was the only way they were going to see for sure what was going on.  Mike was feeling so bad that I don't think he really knew what he was agreeing to, but he agreed.

We finally got insurance approval Tuesday morning (I HATE INSURANCE) and he was admitted around 1pm.  The plan was to decrease the only anti-seizure med he takes and try to stress his body to have an "event" (they call seizures "events") while all hooked up to a 28 lead continuous EEG, 5 lead continuous heart monitoring, 24/7 video and audio surveillance of him.  They had safety precautions like I've never seen before!  Poor guy was belted and locked in to a bed with padded rails at all times unless I was in the room or a nurse was with him.  I really thought he was going to turn and run when he saw it all!

You can see the padded rails on the bed Paige is sitting on and the white strap across the bed is the belt that LOCKS when he was in the bed!  If you know Mike...  you know he's a TAD claustrophobic!  LOL!  ,And just to add to the joy, if he had to get up for anything he had to be harnessed and attached to a walking system that was either on the ceiling (in his room) or portable (when he was walking in the hall).

The  first 48 hours were pretty boring with nothing happening other than a bunch random testing.  Thursday afternoon I was supposed to work late, but ended up leaving early to go to the hospital.  I was also supposed to take the kids with me, but something told me not to and I called Jen to go get them from home and take them to her house.  At about 3:30 we got Mike up walking the halls in the contraption above with his nurse.  He did probably 20-30 laps around the unit and then went back to the edge of his bed.  Sitting there he said his hands and feet felt funny, but told the nurse he was ok other than his headache was starting to really be "cranking".  She got him locked back in bed and then the EEG tech came over the speaker and asked him to breathe in/out fast through his mouth for 3 minutes.  Midway through it things started to get funny.  I looked down at my phone to read a text that just came in from John Williams...  it was 4:18pm.  At 4:20pm it happened...  I replied 4 words to John...  "pray NOW, more later!".  Within SECONDS of the whole thing starting the alarms were all going off and the room was flooded with nurses, he was totally unconscious by then and not responding.

When Mike finally came to they started asking him all kinds of questions.  One of the nurses told him to remember the words "purple donkey" and Mike replied with "why the hell do I need to know that?"!  That's when I knew it was over and he was ok.  Once they had him stable he slept for the next several hours and then had another smaller spell around 6pm.   It was such odd mix of emotions...  we had been praying for him to "put on a good show" so they could get what they needed, but it was so hard to watch!  I called a friend I work with to tell her I would not be in the next day and ended up just sobbing over the phone to her!  The adrenaline had just let loose!

We also learned later that same night that his EKG earlier in the week wasn't quite right.  I questioned it, but the doctor didn't seem to think it mattered.  We didn't worry too much about it yesterday because Mike's seizure doctor was coming on the unit today for her 7 days on in the unit.  This morning she came in and spent a great deal of time with us going over everything they found during the week.

First and foremost, he is not having "epileptic" seizures.  They are "atypical seizure events" that are being caused by the pressure and pain in his head.  No real surprise to us.  She also went over everything else and gave us a good plan moving forward.

1)  He will follow up with cardiology within the next 2 weeks to review the EKG findings and decide what (if anything) needs to be done and if it's playing any part in his constant headaches. The first neuro he had most of the week didn't seem to think so b/c there were no changes on the EKG strip during the event.  But his doctor acknowledged that it does need looked into.   The EKG shows mostly electrical stuff that can be benign, but it also indicates a branch bundle block that will at the very least need followed from this point forward for changes.  And, common sense says if you're heart isn't beating the way it should and not pumping blood the way it should, you could have a constant headache.

2)  We are to follow up with his primary neurologist this week.  Chances are he will want another spinal tap to get an opening pressure to determine if that has any role in this at all.  If it's normal, they will likely put Mike BACK in the hospital for a 3 day inpatient stay of a DHE protocol to try to KNOCK the headache totally out and then try to adjust or better manage it on his meds in hopes of preventing further events.  If the pressure is indeed high and he gets some relief again from the tap, we may opt to pursue a 3 day hospital stay to do a 3 day lumbar drain to see if a shunt or something like that would help.  We will have to talk it all through with his primary neuro and go from there.  Either way, she said another stay may be coming within the next few weeks.

3)  We will follow up with her in a few weeks but at this point, she is not going to add any seizure meds because they aren't a typical seizure or epilepsy.  No reason to add more meds if a seizure disorder isn't the cause.  The meds would be useless.  If he has any more events at home I am to grab my phone and video tape the whole thing and then take it back to her.  He also has to monitor his weight daily now because the one med he's on has a side effect of weight gain and fluid retention which is not good for his heart or body.  If it starts to go up rapidly we have to contact her or his primary neurologist to make changes.

So, she gave him his walking papers and he was a happy man!

All in all....  it was a sucky week...  but we have some direction and know definitively it's not epilepsy or a true seizure disorder.  They do know for sure now that they have to get the pressures down and headaches under control to keep these events from happening which is way easier to do than managing a lifelong seizure disorder.

To those of you who also walk the same path he is walking, you are not alone!

To those of you that read all of this, prayed for us, or have helped in any way...  thank you from the bottom of our hearts for walking this with us!


**  Some have asked again how they can help.  Loving the Lyons Family Fundraiser site is still set up from the garage sale/silent auction that was held last fall.

People That Drift In and Out of Our Lives

I have always felt like God puts people in your life, and takes them out, at just the right time for a reason.  Sometimes, we don't recognize that until years later!  This week I came across a quote in a book that said just that.  It got me thinking about people in my life that, looking back, I KNOW were there for a purpose, or removed from my life for a purpose.

For me, I can see looking back that Michelle (Beiswenger) Johnson was the first of one that was put in my life for a purpose.  Our parents were friends and often spent every weekend together.  While my parents didn't go to church, hers did, and I loved going with them.  It was the first time I heard about "being saved" and the first time I really learned who God was.  I was a child though, and really didn't get it.  Just knew I really liked being with them on Sunday mornings.  As we grew older, and busier, our parents also grew busier and we didn't see each other as often.  We went YEARS without even knowing where the other person was.  We reconnected a few years ago, right after the birth of her last son, Isaiah.  I learned that she had gone on to marry another friend of ours, were very active in their Christian church and community, and she was about to have a very risky brain surgery to remove a tumor.  But her faith was so strong that she pressed on knowing whatever the outcome, it was God's will.  We spent days praying for her as she went through it all.  We also learned that we both were dealing with kids having the most bazaar health problems you could imagine!  We leaned on each other in a way we that no one else understood!  Then...  just a few years after reconnecting...  Mike got sick and needed brain surgery.  Michelle was there to pray through it and provide us with comfort knowing that with God, all things WOULD be ok...  again...  in a way that only Michelle could understand because she and Pat were there just a few years earlier.

The next person (or family) that impacted our life, and drifted away for a reason (I'll explain in just a minute) is Rebekeh Newhard, and her family.  Rebekeh and I met right around the time Kayleigh was born back in 1994.  They moved into the apartment complex we lived in.  We quickly became friends and spent hours upon hours together.  Right around the time of Kayleigh's first birthday Mike had a heat stroke, wasn't working, and we were beyond flat broke.  Our marriage was rough and things were just plain hard.  The night that Mike was in the hospital for the heat stroke, Jim and Rebekeh FILLED our house with food.  We came home and really saw what loving one another and serving one another and living in community was all about.  They never judged us for the very poor decisions we made at that time in our lives...  believe me...  there were plenty of them!  As we moved from house to house and town to town and they continued to help us, love us and really were the best friends we had.  Finally, in early 2000, we moved back home and not far from them.  Mike was sick and having several seizures a week and things just continued to be hard.  Jim and Rebekeh were there, continuing to love and "serve" us, but it was getting hard for them (we just didn't realize it).  Rebekeh finally ended the friendship and said some things that she really needed to say, but it hurt me to the core and I didn't think we would ever forgive each other.  Fast forward several years and she kept coming back to my mind and on my heart and I really couldn't figure out why, but prayed over it and eventually reached back out to her.   It was then that I realized we were "using and abusing" them in way that I never recognized and it was hurting them.  It had gone from us being grateful for the blessing of them in our lives to us EXPECTING them to be in our lives and do things for us.  I am grateful to have her as a friend again and have more respect for both Jim and Rebekeh than ever before.

Then, there is Cyndi (Connelley) Eskine.  Cyndi and I met while Mike and I were in college at Indiana University.  She was a single Mom of two young boys at the time, and worked for the university.  I believe in the beginning, we were put in Cyndi's life to help HER!  She was struggling as a single Mom and the boys needed a father figure in their life.  Both of her boys were fun to be around and they adored our kids.  We had them over a lot, and Cyndi and I spent a lot of "girls time" together while the boys stayed with Mike.  It truly was a joy to watch both Mark and Mitch grow up into fine young men.  After we left IU and moved back up North, we stayed connected but didn't get to see them as often as we wanted to.  Our kids grew up and Cyndi found the man of her dreams, Scott.  Her boys both went to college through ROTC, joined the Army, and later deployed.  We cried together as they left for war and we prayed with her all through it.  Then...   my son joined the Army.  I have the same flood of emotions that Cyndi had years back and she has been MY rock through it.  She understands being the Momma of a Soldier in a way that not many of my other friends can.

I could write pages and pages on the people that have drifted in and out of our lives.  These are 3 that have been on my heart a LOT lately and the 3 that I now can recognize how God has used them to grow us in our marriage, relationships with others, and in our walk with Christ.  I am beyond grateful to each of them and so thankful to call them friends!

Look at the people in your life.  I'm not saying all of them are sent by Go with a purpose, but know that he will use relationships and friendships according to His will for your life.  When you realize that and recognize that...  you will be blessed!

Today I Choose To Be Thankful

---From Michael

I feel like crap.

I know, that is one heck of a way to open a blog with a title like this, but it is the simple truth.  Actually, today I feel downright atrocious.  My headache is floating between the 7-8 range on the 10 point pain scale. My neck feels like it’s been replaced by a steel rod.  My endurance won’t allow standing for more than 10-15 minutes.  My visual and mental focus is making it tough to verify that what I am typing is correct.  My hands are fluctuating between being tingly and numb.  I’m kind of a mess, and, unfortunately, this has become pretty close to the norm for me.

Why am I thankful then?  If this has been my general existence for the last seven months…why be thankful for that?!?!?  The answer seems simple; because of yesterday.

Yesterday!  Oh yes, just yesterday I felt INCREDIBLE.  My headache was ignorable (3-4 range).  My neck was as loose as a swan’s.  My endurance was fine for everyday functioning.  My visual and mental focus was such that I could read normally and stay on task throughout the day.  My hands were fully operational.  I felt as good as I have in a very long time, and I did it without the assistance of any additional medications. 

Yesterday was a gift from God!

I knew it from the moment that I woke up.  There was a “pep in my step” that had not been there naturally for the last seven months.  I was able to shower and shave without feeling like I needed to sit down to regain my bearings.  I spent hours in the kitchen cooking various things while standing the majority of the time.  I was actually able to read my Bible…READ IT!  I have been relegated to listening to my Bible and trying to follow along for months, but yesterday I was able to read and comprehend what Paul was conveying. I was able to attend our Riverview group and actually socialize during our potluck and actively participate in our discussion.  I was able to actively spend quality time with my wife and children.  I was able to laugh.  I generally have to avoid laughing anymore because of the pain it causes in my head.  Last night one of the children made me laugh and I was able to do it heartily without any issues.  It may not sound like much, but for me it was like a day at Disneyland is for a child.

I realize that there are those reading this who are thinking precisely this, “Having yesterday is great, but you’re back to feeling like crap.  Doesn’t that tick you off?”

If I claimed that it wasn’t frustrating, I’d be lying.  There is nothing that I would like more than being able to feel great and resume a normal life again.  That is exactly what yesterday was about though.  Yesterday was short reprieve handed down to me from God.  Whatever this illness is, it has worn me down and, frankly, has taken me to a fairly dark place.  He knew this.  He knew that I was reaching a point where if I didn’t have “yesterday”, I would be closing in on a breaking point.

This morning, when I awoke feeling as I do, I felt that I was left with a choice: I could be angry for an incredible day lost or I could be thankful for an incredible day had.  Our Riverview study just finished up Colossians which is filled with verses regarding being thankful, but I felt compelled to move forward into Thessalonians this morning and there I found this:

Give thanks in all circumstances; for this is God’s will for you in Christ Jesus…1 Thessalonians 5:18

I discovered that where I thought that I had two options, I had only one, and it was not even one of the two I was considering.  This is not about “yesterday”.  This is about EVERY DAY.  While I should be thankful for the incredible gift of reprieve that I was given yesterday, I should also be thankful for today, when I admittedly feel that darkness trying to pull me back in. I should be thankful for every single day that I am graced to experience on this side of life.

Being thankful is not simply an “if you’re happy and you know it clap your hands” agenda…Give thanks in all circumstances, this is our calling and this is what I shall do.

The Price of the Easy Road

I left the comfort and security of North Carolina almost a year ago now.  Mike and I both had good jobs, we had a great house that we loved (yep... that one in the picture), wonderful friends, a great church community, the beautiful mountains, and life was truly wonderful.  Life felt like a warm fuzzy blanket in front of a fireplace on a chilly night with the love of your life...  quite cozy and comfortable.  Then....  God threw us quite a curve ball and before we knew it, He was telling us to leave it all behind to move across the country...  and here we are today.

The first few months here in Arizona were exciting...  almost a honeymoon phase if you will.  Everywhere we went was a new adventure and we were excited about the church plant.  We were meeting often as a small group and we soon started to make plans for expanding and growing our group.  We were starting to see why we were really here in action.  But soon, things started to get hard for each family here.

For our family, it really spiraled downwards and we became weary very quick.  Mike got terribly sick again in July and was in and out of the hospital.  By the end of August he was pulled out of work by his doctors, was hardly able to function, often confused and had trouble putting words together, and he has been off ever since.  I won't lie...  it's been hard!   Finances have been tighter than they've been in years and it's often robbing from the next paycheck to pay the bills this paycheck.  Mike is unable to even get through a grocery store without extreme fatigue and dizziness setting in, often   leaving him on "house arrest".  

There have been times where we get weak.  We start to think about the "easy way out".  Believe me, we KNOW that we could pack up, move back to North Carolina, and even jump right back into our old jobs without skipping a beat and our friends back home would love it if we called today and said we're on our way.  One even joked with me that she is SURE God is telling her that we are supposed to move back (kidding, of course!)  We have a team of doctors there that know Mike and we trust.  Everything we feel secure in is in North Carolina.

But, is that what God calls us to do?  To run and bury our heads when times get tough?  To take the easy route when times get tough?  Remember, it's the devil's business to distract us from the goal.  The more we focus on what we see as reasons why we can't do what we're here for (illness, money, time, etc.) the farther away from Christ we will become, and the reason we are here to begin gets a bit far out of reach.  Is that going to please God?

Or does He want us to have faith in Him, stand tall, and do what we are here to do.  Afterall, He gives us a firm warning in Matthew 21 "Not everyone who says to me, 'Lord, Lord', will enter the kingdom of heaven, but only the one who does the will of my Father who is in Heaven".   When God calls us, we should have faith in His plan and be firm in that faith through ALL things.  Paul gives us great words in Philippians 3:14 when he says "press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus".  The goal is the smile of the Lord when He is able to say "Well done, good and faithful servant" to his children.

Things are GOING to be hard at times and we are GOING to be challenged.  My goal is to praise Him in all we do.  To persevere in times of trial and to give Him glory through it ALL...  the good, the bad, and the ugly.  And in the end, to let our story of faith and perseverance be a testimony to others that we are blessed to share His gospel with so that others may have the same hope in Christ that we have so that I may hear the words "Well done!".