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One Brave Son: Adam Heading into Surgery

Last week, the day before Adam’s next surgery a friend sent me this email… I think it is useful for all.  Thank you Mark.

I know today is a difficult day for your family.  I’m sure it is more difficult than I can comprehend.  I feel truly grateful to have been able to read the blog you have been posting.  I find myself looking frequently for updates.  It truly is a testament to your faith and I feel privileged to have the opportunity to receive instruction through you.  I’m certain that you and Adam are tools in master’s hand and your blog will bless the lives of many.  You mentioned that if we had any messages for Adam that you would read them to him.  Hopefully this might be helpful in some way.

Adam giving us a smile with his Trek Ma & Pa

First, just a quick update on Adam.. His CT scan came back showing an increase in swelling or fluid build up, which is to be expected, and which is most likely causing him a good amount of pain.. which he cannot really tells us about at this point…He is sleeping at the moment.  Thank you for your prayers.

Many years ago I heard my father utter the saying “still waters run deep”…. He was talking about a man we knew.  I don’t remember who he was but I do remember the saying and the ring it has carried in my thoughts over the years.

We use this saying when relating the personality traits of an individual who is quietly strong, not boisterous in their outward personality, but  possesses an inner strength to push through difficulties without complaining and without looking for the fanfare.

As many of you know we live on a little farm and with all farms come a number of activities (parent talk) or chores (kid talk) that need to be accomplished everyday, every week and every month.  At first animals are exciting and new, but over time they can become a “chore.”  Adam and his sisters do a very nice job in helping out around the ranch and completing the chores.

There are times when we all have been very tired, yet the “chores” still needed to be done.  I have seen the inner strength in Adam, at the family level, quietly put his shoes on and head out to do the tasks that no one else wanted to perform; I have seen him in the rain, in the heat, in the day and in the dark willing to perform that which needed doing.  He has been a wonderful help to Cindy when I am not around.

I have seen the stirrings of the still waters at 4:30am while getting him up and ready for seminary. You see, a lot of seizures would go unnoticed, they would happen at night in his sleep.  The seizures would take a toll on him physically and mentally, in the form of fatigue, mental alertness and overall wellbeing… Adam wanted to be with the other kids at seminary so he would push himself to great lengths, not complaining only a quiet ‘I don’t feel good, my head hurts” in the mornings.  As parents it was always a difficult choice… How far should we push him… if we push him too hard and he becomes too exhausted he might have a seizure at school… exhaustion can bring on seizures in individuals.

We would ask ourselves; if we didn’t push him, were we allowing him to be lazy?  Each morning Cindy and I would have to make a decision, a decision we questioned everyday, every week, every month… did we do the right thing?  Did we push too hard or not hard enough?  Adam never complained, he would try to tell us how he was feeling, sometimes stronger than others;  I really think that Adam was feeling so bad so often that it became his new normal… his base line had been reset to miserable.

I have seen Adam’s internal strength when he was the last kid to be picked for a game, or when others might have shunned him for their own social gains or the look on his face when he didn’t get invited to a party that everyone else did.  He knew what was happening, yet he always said it would be ok.  He never holds a grudge, is always forgiving and always willing to let the past be the past.  It doesn’t matter how someone had treated him, it was how they were to him today. He doesn’t speak ill of others and is always ready to make a friend.

I have seen the still waters in Adam move him to compassion; sincere concern for others.  The off shoot, the social outcast, the lonely, and downtrodden… Adam has always found a real interest in those who might not be “part of the group” He has spent time with them, making a friend and finding good in everyone.  This is an inner strength, an inner security that runs deep in him.

At the moment Adam is lying in his hospital bed, fighting for tomorrow, fighting for his future; Fighting to overcome the several large portions of his brain which was recently removed… Even in his weakened state, I can see the still waters in motion, rising from a deep spring; a spring that resides from within.  I see him pushing himself to get out of bed, to sit up, to stand up, to walk a few steps.

I see him fighting to find the speech he once had; wanting to make sense of the objects around him.  I can see the frustrations, but I am not sure he understands where they are coming from.

I see a strength in him just to get through the day; to make it through the night and to make it to tomorrow…. how do you tell someone you have to go to the bathroom when you cannot find the words to talk and express yourself or your needs?… yet he pushes on… always fighting, never giving up.

All this and so much more has been done in such a quiet way… Adam’s way.  Like all kids, Adam wants to be happy, he wants to have friends but he doesn’t do it at the expense of others… He is an open book with gentle pages, always willing to share himself.

There is a quiet strength in Adam, as he gets older and passes through these teenage years this strength will become a greater asset to him… the current time will pass and will only be a memory, but Adam’s strength will become stronger and stronger with each new sunrise.

Adam’s water runs deep and flow from a divine well.  Run strong, run deep and always keep the Masters Touch my son.

Dad giving Adam a Shave

Beautiful sunset in Orlando.. Tomorrow will be a new Day for Adam

Sweet Sheena, Thank you for your words and the song of an Angel… Amie:   Sheena’s post on Facebook … I hope you don’t mind me sharing it.  We have received so many touching words and thoughts… please forgive us as we only post one here and one there: I would love to post them all as you all have been so thoughtful.

“This is my cousin Adam. He has suffered a lot in his life. He never complains. He has been through multiple brain surgeries in the past couple of weeks. The last one being just Wednesday. He never complains. He has this faith in the Lord that I want one day. His family is incredible. Every word is worth reading. The two posts that touched me the most personally was “Unimproved roads” and “Mother”. I want to shout to the ends of the earth the inspirations I’ve received and how much I have changed for the better since I’ve been reading this blog. Thank you Adam Hawkes, Michael J. Hawkes and Cindy Lodholm Hawkes for your examples and sharing your story.”

Sheena Hawkes

UpDate:

We received an update from the neurosurgeon on call. Adam’s CT Scan came back with no major problems… The swelling on the brain more than likely is causing additional pain: The pain is reaching a level that causes his body to throw up… he just can not tell us his level of pain.. he just lays there and takes it… poor kid… I can not  imagine it.

Cindy insisted that I leave the hospital last night and the night before to catch up on some sleep.  I guess I am becoming a little short with things. Just changing locations doesn’t necessary change your ability to sleep.

I got a call from her late morning stating that Adam wasn’t doing well.  Adam hasn’t been able to eat since surgery, if fact very little the entire 11 days he has been in the hospital. He has been very fatigued and throwing up often. The back of his head continues to weep or leak from several areas along his incision.

When Adam throws up the only thing that comes up is bile.. there is no food in his stomach, there is little to no water, except what he drinks when giving him is oral medications.

Problem: These are possible signs of a bigger problem, the doctors don’t always want to tell you too much until they have time to think it over and look at some more data.

I am rushing back to the hospital but hit a pile up of traffic on I-4.. It looks more like a parking lot than an interstate… my heart is racing, my guilt is sky rocketing, knowing I shouldn’t have taken time away from his side to escape for a while…I should have been at the hospital…come on traffic…MOVE!

The doctor ordered an immediate CT Scan for Adam.  I just got to the hospital, saw the Boehner family in the lobby waiting to see Adam.  I rushed to Adam’s room but we had to move..the bed driver was there and they had the equipment waiting.  I went back and apologized to the Boehner’s…please forgive us… we so appreciate you making the journey to the hospital.. Please tell Brigham we are so grateful that he is Adam’s friend.  We had to rush him down to the imaging area for the CT scan. Things are piling up rapidly.

I can not explain the panic; I can not explain the helplessness; I can not explain the inner feelings you feel when your child is not responding, when his head is swollen and bleeding, causing blood spots on his pillow case. My emotions are piling up… I feel trapped, I can’t help him.

Adam’s color is not good… much more pale than it has been, he is sweating a great deal, more than he should.. we have the room on full cold and yet he sweats.  Most of his bandages and the medical tape over his IV’s continue to come loose because he is perspiring so much.

When I look at him in his hospital bed, so catatonic, so lifeless, so weak, just laying there …my soul groans from within.. it groans with a pain that’s not normal…its deeper:  Wanting so much for this to pass and for him to come back from the shadows, to come back to us.  I have, I believe, a small understanding what it means when the scriptures tell us that the Savior “groaned within himself.”  The Depth of feeling is something very  profound,…it’s hard to understand and even more difficult to explain… It can not be found from within, it has to be found from without.  The only source of balm, the only source of comfort from this pain comes from the Father… Christ set the example in all things, He taught us if we will but look to His example…in these moments He taught us to pray to the Father… Seek the Father as He holds the healing balm for an uncomforted soul through His Son… So simple, yet so hidden… until you experience it.

We are waiting for the doctors to read the CT scan and tell us the results… waiting and waiting…. Time can move so slow when the anguish is great…. I wonder if time moves this slow in Hades…. if so it will be a long painful stay.

The Day Before:

Yesterday was a better day than today.  Adam was working on his speech therapy and physical therapy with several individuals. For me it is difficult to watch him go through these motions:  In my minds eye I see the old Adam, the  big, strong, happy, lovable kid, and now all I see is a shell of that boy… yet I find solace in these moments.. Knowing…hoping for a better tomorrow.

I am attaching a few clips from some of those sessions.  Each session only lasts for 10-15 minutes… then he is wore out and needs to rest.. We have only recorded a short portion of these workouts… from the video you can see the blood spots on his pillow case.

During speech therapy his lips are trying to make the sounds, but they are not puckering up to help form the words.  His lips remain flat when he tries to talk. His voice is very soft and his eyes show a lack of comprehension… yet he tries and continues to try, I know he understands some of the world around him.

He is a fighter, fighting the fight of his youthful life.

Keep fighting Adam… We are here… Please know that we are here by your side, now and forever. Mom & Dad.

July 27, 2012   7:45 pm

At 8:30 this morning our favorite nurse Lindsey came in.  We talked about the need for Adam to urinate or he would have to get the catheter put back in.  We woke him up and explained the situation to him.  He said okay in a frustrated tone…..he didn’t  want to be bothered right then he just wanted to keep sleeping……he understood the importance though and sat himself up in bed.  Lindsey and I unhooked all the wires, he stood up and walked to the bathroom.  I am amazed that he is able to walk as quickly as he does.  His fast pace makes it difficult to keep up with him, especially when I have to push the mobile IV unit.  It is such a blessing that he has his motor skills.  Happily it was a successful trip to the bathroom….. he did it…… that means no catheter…..another small victory!

A short time after our bathroom triumph, Adam’s physical therapist Joyce entered the room.  I wasn’t sure if he would be ready for the morning exercise routine…..all he really wanted to do was sleep but he complied anyway. I’ve observed that Adam is willing to try whatever he is asked even if he doesn’t want to.  He will often respond with an irritated “Fine” or “whatever”.   She asked him to climb out of bed…I naturally wanted to help him get his feet on the floor but Joyce stopped me and said he needed to do it completely on his own.  Its so hard not to help your child when you see them struggling…..but Adam is strong and was once again able to haul him self right out of  bed.  She asked him if he would like to go for a walk and he immediately headed toward the door….he just wanted to get it over with, I could tell.  He wanted to walk fast…..maybe he was showing off, I don’t know but it worried me a little.  I didn’t want him to be overconfident and run into something.  There were obstacles…..chairs, people…even a door swung open right in front of him and he avoided it.  He did two full laps around the track and was ready to go back to the room.   Joyce asked him where the room was……without hesitation he turned and went directly there.  I know at that point he was hoping to snuggle back into his bed, but there was no rest for the weary yet, Joyce had exercises for him to do.  Even though she seemed pleased with his ability to walk, she wasn’t going to be satisfied until he performed some toe raises, knee bends, and leg lifts.  He did pretty well with these although he was a little shaky on the knee bends……why wouldn’t he be, he’s been in bed for a week and has had two major surgeries on his brain. Overall he did well and we expect him to improve daily.

Not long after Joyce left, in came his speech therapist Cari.  When I saw her I thought to myself,  he has had enough already for the morning.  Cari spoke to him in a kind voice and he responded well to her.  He wanted to sleep so badly but was once again willing to comply.  Speech therapy is much harder for Adam because this is where his greatest deficits are…..this is where he struggles the most.  He is aware and knows what is going on around him but when he tries to speak there is a disconnect between thought and the motor skills of speech. Cari would show him an object such as a ball or spoon and would ask him to name the object.  He wasn’t able to name the objects without her naming it first.  I could see him straining to think and try to make his mouth form to the proper shape to say the word.  In his quiet, sweet little voice he said “ball”, “spoon”, and “toothbrush”.  She would also show him a card with the name of the object spelled out in big letters. ……. he was able to read some of them.  At times Cari would ask him to show how to use the spoon or toothbrush and he would gently bring the item to his mouth.  He seems so sweet, so innocent and vulnerable.  On Tuesday he had all his faculties and could speak, laugh, and hold a conversation.  Today he can barely speak the simplest of words.  I know it is only temporary…..but how temporary…. days, weeks, years?  I don’t know and the doctors don’t know either.  Dr. Lee said that usually people like Adam make slow progress for a while and then all the sudden one day they wake up and are talking normally again.  I just pray that we don’t have to wait too long for that day.

Some friends from Mike’s office were so kind and brought Adam a bag of goodies.  Inside were some books on reptiles.  Anyone who knows Adam knows that he loves all kinds of reptiles, especially snakes.   He has quite a few as pets at home and guess who has to feed them while he is in the hospital…yep…me…but that’s another story.  I opened the book on snakes and began to show him the pictures and his eyes brightened a little…he was interested and wanted to see more.  I would say the name of a particular snake and then I would ask him to repeat it….trying to do it in a way that he didn’t think I was doing therapy with him.   Adam was able to say reticulated python, gaboon viper and many more.  He began to wear down quickly so I stopped and let him rest.  It was very encouraging to hear him say complex words.

Adam has continued to be in a lot of pain but he doesn’t complain.  The nurses give him pain meds and anti nausea meds around the clock.  They have to do this because he won’t say anything about his pain on his own.  If his pain gets to high he starts to feel sick and will throw-up.  He hasn’t been able to keep much food in his stomach….only a cracker and a little soup today.  I am hopeful that tomorrow he will be able to eat more.

I often sit next to Adam’s bed, hold his hand and gaze at him.  He is still a handsome young man even with his swollen, misshapen head and giant sized scar. At times he will give me a smile or a gentle kiss on the cheek….these are the moments I cherish as I wait for his return.

Please Adam don’t be gone too long…..oh how I miss you so.  You are a special son of our Heavenly Father and I feel blessed to be your Mom.

July 28, 2012   2:30 am

I was jolted awake by a rustling sound coming from Adam’s direction. Through my blurry eyes I could see him struggling with his bedclothes and trying to sit up.  He was reaching wildly to the left side of his bed….but what he was reaching for I couldn’t tell.  I through off my covers and raced to his side and I could see he was trying to grab the mobile IV unit and pull it around the end of his bed.  I realized he needed to go to the bathroom and he was in a panic to get there.  I hurriedly unplugged the IV unit and all of the cords and wires attached to him and escorted him to the bathroom just in time.  Whew! That was a close one, almost didn’t make it.  When he was finished and climbed back in bed I could see a grimacing look on his face….now what was wrong…seconds later he motioned to me to get the pink bucket.  Poor kid……he threw up again…..when are we going to get this nausea under control?  The nurse came back in and gave him some more anti-nausea meds….hopefully he can sleep now.  Sleep, that sounds nice.  I looked at the clock and it was 2:00am.  I was asleep just over an hour before this all happened and now I can’t go back to sleep……so here I sit typing these early morning events.

I am swiping some of Cindy’s notes to give a short update… Please forgive me Cindy….  Adam has had both physical and speech therapy today… we will include some videos of those in a while.

Thank you again for EVERYTHING

July 27, 2012

 It’s 3:15 am, and I just spent the last 45 minutes trying to get Adam to urinate on his own.  His Catheter was taken out at 3pm today and he hasn’t gone since.  The doctor on shift tonight says if he doesn’t go soon or at least by 8am they will have to put the catheter back in.  Adam and I tried everything we could think of. He is unable to speak to me except for simple words said one at a time.  He gets irritated with his inability to say what he wants to say.  He is aware of his surroundings and what is going on but just can’t communicate well yet.  He also gets annoyed if you talk to him too much or speak to fast.  His brain doesn’t seem to be able to keep up and process the information.   He is so sweet though, and has been so compliant with everything he is asked to do.   He was sleeping quite heavily when the doctor woke him up to tell him he needed to try and go….he sat up…we unhooked him and he pushed himself out of bed and headed for the bathroom.  I stood there with him for 30 minutes but nothing happened… he was patient though and tried so hard to do what he was asked to do but his body just wouldn’t function in that way yet.  I said a little prayer and still nothing happened.  The doctor said that if he is up and moving around more it could help him go.   I asked Adam if he could walk around the hallway and he said okay.  The nurses had to hook him up to a mobile monitoring device before we could go for a walk.  Once hooked up, off we went and I was surprised at how fast he wanted to walk.  I think he was walking fast because he wanted to hurry and get it over with.  He walked the whole loop.  That was the first real walk that he has taken except for going to the bathroom.  To me it seemed to be a small victory… at least his motor skills are still intact.  We made it back to the bathroom but still no luck…poor kid, he hates that catheter.  I hope and pray that his bladder and urinary tract system starts working soon.

Adam’s main deficits right now seem to be speech and processing.  It’s as though he is living in a fog and he can’t find his way.  He is searching and trying as hard as he can to break through to the clear. 

As I look at him I think about how much he has been through in his little life.  He is my sweet boy Adam who was so full of energy.  Now he lives in a haze of confusion trying to make sense of the world around him. Adam I am so sorry you have to go through this…my heart aches…I want to take it all away.  I love you so much, more than you will ever know.  I pray that this fog will pass and you will be you again soon.

Adam Sleeping Day 2 After Surgery

Cindy Reading To Adam; Working on His Speech

Resting

Tender mercies come in many forms; They are gifts and blessings from a Loving Heavenly Father to help those of his children in need.  At times they come directly from Him to help His children:  Then there are times when God uses others as his messengers to help those in need by lighting their load.

We arose this morning from a restless night, working on a few hours of sleep to find Adam in a place he has not been before. He is able to answer simple yes or no questions, but he is not able to find correct words to describe objects or situations. While holding up a cell phone and asked “what is this” he would say “a tomato.” Dr. B said it would get worse over the next two days, but then he would begin to get better… we are praying.

It is heartbreaking to see your child in an altered state, even now tears blur my vision as I try to type.  The thoughts are too deep and the emotions too powerful.. I am weak and almost have to kneel before them.

Yet what are the Tender Mercies of the Lord?  The “… tender mercies of the Lord are over all those whom he hath chosen, because of their faith, to make them mighty even unto the power of deliverance” (1 Ne. 1:20).  The Lord is mindful of all His children and stands ready with open arms, if we will but go to Him.

At Cindy’s prompting and with some of her thoughts I write the following;  A few of our Tender Mercies

1.  Tender Mercy #1: Late manifestation of TS. Adam has Tuberous Sclerosis (TS): It is a genetic disorder and has caused tubers to form in his brain.  Most Children who have this disorder and when discovered at birth have their mental development slowed; It is usually discovered because the child is having seizures.  Seizures will hamper or severely disrupt the development of the brain… A large percentage of children with TS never develop mentally.

Adam was Seven Years Old when he first showed signs of TS… in the form of a Grand Mal Seizure, clinically know as a “Tonic-Clonic” seizure.  This Tender Mercy allowed Adam’s brain to form the connections that are so important for a child to function. He was blessed with a reprieve from the destroying effects of seizures during these formative years.

2.  Tender Mercy #2:  Michele Boehner: It was Michele who first told us about Dr. Lee. I mean no disrespect towards Adam’s other doctors, but Dr. Lee has put together a phenomenal  team of specialists.. and their practice is growing with more talent being recruited  .  I can not imagine this type of surgery with anyone or any other team in Florida. It was through Michele.. just a simple comment in a conversation with Cindy that we were led here.

3.  Tender Mercy #3:  Family & Friends; Cindy and I are so grateful for our Family ties, those eternal relationships and for the friendships we have developed over the years. Many have taken time out of their busy lives to make our day better.  I could not begin to name the names and would be afraid to do so just in case I missed someone.  God knows who you are, we know who you are and we wish to say… Thank You.

4.  Tender Mercy #4: Adam’s Eagle Project. It was truly a miracle that Adam was able to get his Eagle Project Approved , Completed, along with the Eagle Scout Board of Review.  This took an army of effort to accomplish it in such a short time. Things had to fall into place, specific people had to be contacted, review processes needed to function… and so many more items needed to be done.  People had to come together… and they did… help and assistance was needed… it arrived.  It fills my heart to have seen a simple miracle come about that others might have missed; I suppose many miracles are wrought this way, simple and unassuming.. No neon lights flashing in the sky; No billboards, No trumpets sounding over the airways, just the everyday, ordinary work moving along in an ordinary way; a miraculous way, unnoticed by many..but found by a few.   Thank You.

41/2 Tender Mercy # 4 1/2: The Day before surgery:  After Adam’s first surgery he had been experiencing a great deal of pain. This continued for most of the week.  He could only take short periods of time to exercise mental alertness when others were around.  There was swelling on the left side of his brain, numbness in his right arm and in general he felt terrible.  But the day before surgery, Tuesday, it was as if a switch had been flipped for Adam.  He was his old jolly self, making jokes, enjoying everyone who came to see him.. his endurance was as if he never had surgery; as if he did not have the 108 electrodes on his brain.. it was our old Adam, and with an appetite. What a Tender Mercy it was to have him back for this short time, these precious moments of the day; What a wonderful blessing to our family that he could give his sisters a hug, to embrace each of us and tell us he loved us. In addition he was able to make his recording for all of us to hear… It was a wonderful blessing, something that could be overlooked by the skeptics. Thank you for being here on Tuesday.. today you are gone again.. Please come back… Dad.

5.  Tender Mercy #5: The Power of Prayer:  Over the past several days and even weeks many prayers have been offered in Adam’s behalf… Many from individuals, groups and congregations who have never met Adam, nor do they know him, yet their Christlike actions united with others who know Adam to petition Heavenly Father that the power of healing might be upon him; That the power of guidance would be upon his doctors and surgeons; That the strength of a united Faith would call down the powers of heaven for this young man.  People from all walks of life have joined in… how can I express my gratitude.. I don’t know how… please know that we are so thankful for each of you. This has been a miracle.. I understand that modern communications has allowed us to facilitate some of this, yet isn’t this a Tender Mercy in and of itself? Thank You.

6. Tender Mercy #6: John Fluhart: John is my boss at work, but a simple kind act on his part has had great ramifications.. there again it is the simple, almost unnoticed actions that carry the greatest meaning.  I had a two-day trip that I was supposed to fly the Monday and Tuesday prior to Adam entering the hospital… no big deal… I wasn’t really needed until Wednesday when Adam was admitted. John offered to fly my trip to allow me a little extra time with Adam.

During these two days, Adam and I had such a sweet time together.  All he wanted to do was be with me and spend time together.  We drove around to different pet shops looking at a variety of snakes and reptiles; We had long conversations and just hung out… oh how I cherish these small moments… Had I been gone I never would have had them and they would have been missed forever.  In addition to these events I was able to attend Adam’s Functional MRI.. very important to be with him and I was able to be at his Eagle Scout Board of Review.. a once in a life time event… Thank you John, you really don’t know how much this meant to me.. I’ve tried to express my appreciations but I don’t think they carried the real power of my feelings… Thank You

7.  Tender Mercy #7: All the kind words so many have offered: It might sound a little unusual to those who haven’t been here, but your words of encouragement mean so much.  I never thought I would start and write a blog.. I am just not that kind of person… whatever kind of person that is… interesting thought…but it has been through this blog that we have had a flowing fountain of freshness; a renewing of spirit in a difficult time.  Thank you for your heartfelt comments:  If I might copy a comment from a friend who wrote.. some might have missed it on the post;  it is an example of the strength you offered us.

“Mike, please know that you have so many of us thinking of and praying for you and your family. Through your words we are given updates. We are also given a vivid picture of a very special young man. I am amazed by his strength of character and faith. His example is truly a blessing for all. You described Adam’s journey over Mt. Everest. When Sir Edmund Hillary struggled with Mt. Everest, someone else struggled with him – Tenzing Norgay. You and Cindy are Adam’s Tenzing Norgay. A full day in the Neurosurgery Waiting Room is a very difficult burden. A burden different from Adam’s; but, a burden, like Adam’s, made lighter by faith and prayer. In spite of your journey over Mt. Everest, you were still able to think of others and pass along your updates. Thank you. Please give Adam our blessings and squeeze his hand for us.”  Randy Hansen

God Bless you all..Thank You.

8. Tender Mercy #8: The Nurses:  Adam has been blessed with wonderful nurses.. I hate to break them out from the pack as there are so many wonderful ladies here:  But I would like offer a special note to Lindsey and Tracy.  You have made Adam so much happier, your care, concern and love shows in your actions.  We so much appreciate you taking a little extra time to spend some one-on-one with Adam…I hope you can keep the bucket list alive, active and well.

9. Tender Mercy #9:  Adam’s Story: The knowledge that Adam’s story has helped others and may be of help to someone in the future.

10. Tender Mercy #10: Interest in Adam: It has been such an uplift to Adam from those who have taken an individual interest in him and who he is; Those who have sat down with him over the years, and in the hospital, and have  had an enjoyable conversation with him, who truly enjoyed Adam for who Adam is.  From a parents perspective there are no greater acts of kindness, no greater examples of Charity than this. I can only imagine that the Savior will be the same with each of us when we meet Him.

11. Tender Mercy #11:  All the Ward Members:  Ward members are those who we go to church with. Their Christ like actions and deeds have been overwhelming.. from the Relief Society Presidency to our Home Teacher, Richard.  All of you have given words of encouragement, hope and offered help… Thank You.

These examples only begin to scratch the surface of the Tender Mercies we have experienced…There are so many, many more; from the office staff at work with all their behind the scenes efforts, to our Bishop and Stake President…. I do not believe this blog could hold the number of blessings we have experienced from the people who have touched our lives and who are pulling for Adam… Thank You.

Lastly I wish to express my Love to Adam’s mother…Cindy…Her love for me and for our family is the greatest Tender Mercy I have experienced in this life. I am so grateful to a kind, loving Heavenly Father who took mercy on me and allowed such a wonderful woman to come into my life. She has such depth; such compassion and such insights:  I would like to post an email she sent to me just a little while ago;  Cindy I love you for all that you are… A Daughter of God:  Thank You.

“A thought occurred to me while driving home.  A thought that gives me comfort and peace..a thought that I believe has come from heaven. I think that right now Adam is like a caterpillar who is in a cocoon.  A lot is happening inside there right now..new pathways are being constructed…connections are being made….he is being shaped and molded until finally one day he will emerge from that cocoon.  The Adam that emerges from this cocoon will be as a beautiful butterfly… even more beautiful than he was before because he will have learned so much. He will have greater empathy, deeper compassion and be more like our Savior Jesus Christ. I am anxious for the day that I see this precious butterfly emerge and unfold his beautiful wings. I love you Adam.”  Cindy.. AKA  MOM

Adam giving Loren a Hug

Adam Giving Shelby a Hug

Crew on the Eagle Scout Project

Dr. Lee and Team

A mountain was conquered today, the ascent was steep and the cost was great; but the emotional cost was shared by many, so the load was light. Today our son climbed a mountain and tonight we sit by his bedside. What a blessing it is just to hold his hand again, to see his face and to have him near.

I tell you that there is power in prayer; It was by the power of prayer; our united prayers that Adam came through this day.  It was by the blessings of the priesthood that he is here and his future is before him.  You built a ladder today through your prayers; a ladder our son was able to climb on this surgical ascension.  You fasted in faith for a miracle, and a miracle was given. We united our plead to the Father and he kindly heard our voices.

The climb was not without hazards, there were rocks to cross, ice bridges to span and storms to wade through yet we stayed mounted on the trail upward.

Adam was initially prepared for surgery this morning in his room at around 7am.  He only had a few hours of sleep from the night before.. we could not find the way into our dreams last night, sleep evaded us.  Cindy, Adam and I were all operating at a high energy level until around 1:30am, finally I stated we needed to get some sleep.  Adam wasn’t tired and wanted to talk more.

Before entering the hospital we thought it would be a good idea for Adam to come up with 10 goals that he wanted to accomplish after surgery.. our intent was to have a list of items that he would want to push himself towards to help in his recovery.  Before arriving here Adam only had written four goals.. so we worked on six more.  He was the one who reminded us to help him get this done.  He had several other items he wanted to talk about… especially about a couple of his nurses.

Before going to bed Adam insisted that I commit to give him a blessing shortly after surgery.  He was very directive in this request and uncharacteristically determined in it.  Of course I agreed.. I suppose he realized he would not have the ability to request it after surgery so he insisted the night before.

The time came when we had to leave the PICU room and head to the O.R. (operating room/area) the bed driver showed up and was being a little impatient with us… I suppose we were not helping his time line, nonetheless he was the bed driver and this was the few remaining moments we had with our son before heading off to the headmaster.  Something in the back of our minds was keeping him and us here… it was safe here, they were not going to cut on our boy, they only take care of him here;  they show him care and love. In my mind the journey to the O.R. was like the spanning of the ice bridge, it is unsafe and unknown.. danger was in that direction or at least the unknown of neurosurgery and the removing of brain tissue.

Lindsey, our nurse, went with us… she is able to bring a smile to Adam and he loves visiting with her about their bucket lists. For them the future holds noodling, swimming with sharks and bungee jumping,  Once at the O.R. Lindsey had to leave.. it was sad… but she will be back.

After all the paperwork had been signed, there was a short visit with the surgeon and anesthesiologist, then they came to take our boy away. I can not tell you how scary this is, how much inner turmoil you go through, how hard you try to hold back the tears, yet they rush to the surface as a torrent of emotions flow over you… still we had to let him go, we had to put our faith in God, and in the power of prayer to guide the surgeons hands.

The operation was scheduled to last 4-5 hours, he was to be out of surgery no later than 2pm local time.  We said our good byes; but they were not really a good-bye, more of we love you, we will be here when you come out and it will be alright… God is watching over you.

Cindy and I were exhausted but we couldn’t rest, we tried to stay busy but did not know what to do with ourselves.  But what felt right was that we should be together away from everything else.. we needed privacy.  This is a journey parents must take alone.. it is something that is difficult or impossible to share.  There are so many who offered their help… we were so grateful for those offers… but this seemed to be a journey we needed to do together and away from others.  I am not sure why it felt this way… maybe it is due to the fact that we helped create this wonderful boy, we brought him into the world and now we needed to be there for his rescue, for his wellbeing, for his Everest struggle.

I know that many of you followed Adam’s progress throughout the day… a surgery that was to take 4-5 hours, ended up taking 9 1/2 hours. We would get a call from the O.R. every 3 hours or so to let us know that Adam was OK… but why was it taking so long… Why so long.. what’s wrong.. you begin to question.  Your mind begins to speculate… if there is a void of information, thoughts and feeling begin to be sucked into this empty space… it becomes a negative pressure area pulling in thoughts and feelings from your mind and surroundings…your mind continuously works on filling the void; it strives to find an informational pressure balance… We had no good answers.

Dr. Lee did find us at 1pm in Adam’s room.  They had spent the entire morning mapping Adam’s brain, drawing the lines of demarcation. Taking extra care on a difficult case.  We so appreciated Dr. Lee’s visit. Adam was now in the hands of Dr. Baumgartner, the neurosurgeon. From about noon on Adam was being operated on by Dr. B.  We did not get to visit with Dr. B until the surgery was over.

Around 6:30pm Dr. B (neurosurgeon) came out of the O.R. to the waiting area and called us in.  My thoughts, my emotions were all numb by this time.  Dr. B handled us well and explained the surgery… I could tell the surgery took a toll on him, yet he was still full of energy. He stated that it had been a more complicated case than originally planned.  Adam’s brain anatomy was not normal… the normal land marks they use for surgery were not in the normal places.  Dr. Lee and Dr. B had to find, understand and mark these new landmarks prior to any cutting.  I appreciate their diligence and care in making the extra effort for our boy.

As Dr. B explained what was done to Adam, my mind raced, my heart hurt and my emotions returned.  Adam had a large part of his left temporal lobe removed.. the forward part of  the temporal lobe was removed along with some of the lower areas… they kept the language area in tact.  This was another complication they ran into… One of Adam’s troubled areas or one of the areas that is causing his seizures is located on and around the language area of the left temporal lobe… in addition his hippocampus is under this language area.  With the difference in Adam’s anatomy Dr. B was unable to remove his hippocampus.  He attempted to resect the hippocampus by going in through the top part of the temporal lobe, in through the side and under the temporal lobe but was unable to do so without causing damage to the language area.  He took the conservative position and left it in tact; He left it alone.

I think this will turn out to be an unseen blessing.  During the mapping stage this morning in the O.R. Adam’s left temporal lobe showed a good amount of abnormal electrical activity, after the surgery they tested this area again and it was “quiet”… no noise.  If in the future this area resurrects itself they can go back in with computer guided surgical instruments and remove the hippocampus.

The other area of resection was Adam’s left frontal lobe.. they totally removed his SMA area… we will see what effect this might have.

There were other blessings along with keeping his hippocampus today; There was an area of Adam’s brain that the doctors had planned to separate by placing an incision to disconnect the area, making one piece into two… they did not have to do this as the brain electrodes showed no need to do so where previously they had.  The operating room EEG testing showed more detailed information that allowed them to bypass this area that they had initially planned on cutting.

You and I both know that it was the power of prayer that allowed this to happen.  Angels were watching over Adam and his doctors today.

We did not get Adam back in the room until 9pm tonight.  At first it looked grim, Adam was non responsive, only groaning; We were met by an ICU physician when we arrived at Adam’s room; he gave us an initial report that  sunk our hearts and hopes way too quick… I am not going to dwell on this.. needless to say Dr. B came up and restored  our hope… lesson learned, don’t listen to all doctors.

There have been a few moments tonight when Cindy and I wondered what Adam will going to be like going forward… Then I remembered his request for a blessing.. it is to sacred to share but let it be said that Adam is talking to us tonight… it’s only a little, but he is talking to us. He knew us, he knew the room around him and he wanted to hold our hands.  Cindy was able to calm his uneasiness, she sat by his bedside, talking softly to him, holding his hand and did only what a mother can do… LOVE… love a child as only a mother can do.  He came from her womb, they were one for a time and will ever possess that connection. She is the calming of the storm, she parts the troubled waters to allow safe emotional passage for our family.

Today Everest was climbed by a young man who faced the storms of this angry mountain most of his life. He has passed over the rocky ridges, he has breached the unknown ice bridges and fought an uphill battle for the past ten years.. but today he reached a peak; a peak I can not imagine how hard it was to climb to. Knowingly going forth to have part of your brain removed, yet able to exercise faith and to demonstrate trust at such a young age.  He faced the storm winds head on without fear because he had faith, without doubt because he knows in whom he trusts, he is without despair because he has hope.

This is a mountain that we all have climbed together this week.. There will be other mountains for Adam to climb as he goes forward.  We don’t know what the future holds, we don’t know what to expect, we don’t know what long-term issues might exist.. Yet we are determined to go forth with faith, we will go forth with hope and we will exercise charity.

Thank you all for your fasting and prayers..Tonight we have our son back, we have crossed the bridge only to find ourselves on the other side… this is uncharted territory for us, but together we can find our way.  Thank you

Adam is out of surgery and back in the room.  He got here at 9pm… it was a 14 hr day for him.. there were complications.. this is why the surgery took so long, but they feel it will be alright… I apologize but I can not write at the moment.  I will try to bring you up to date at a latter time.  Thank you all so much.

Adam left his room over 10 hours ago.  The initial plan on surgery was estimated to take 4-5 hours. We continue to get updates every 2-3 hours… his estimated surgery time continues to get pushed back.  As it stands now he will be on the operating table 9 1/2 hours.

I am concerned due to the additional time, yet we can think of it in terms that they are not rushing… taking their time, being very careful on him.  I feel for Dr. Baumgartner, the neurosurgeon he is on his feet all day… 9+ hours for Adam and another patient waiting in the wings for him to perform surgery on.

Thank you for everything… each and everyone of you… it means so much.  I can not begin to tell you of the love and kindness we have felt… I am in your debt.