Author Archives: michaeljhawkes

As I ponder back on our written history, from Father Adam forward there is always someone who is mentioned  in the scriptures or in the journals of history, although they are not talked about too often they are always there; that person is Mother. Why is she not mentioned as often as her male counterpart? Others might have a better answer than I, but I think, in part,  it is due to the nature of  her role in Heavenly Fathers plan; her role is to sacred and to special to lessen it with repetition; She holds a grand eternal position that none can fill but her. Eve was there with Adam, this union provided the pathway for Heavenly Fathers children to enter into this mortal experience.  From Adam and Eve sprang all the children of earth but from Eve flowed compassion and nurturing to the human race.

I have been with Adam in the hospital since we arrived earlier this week; I have come to realize or been reminded of that which I knew, that I can only do so much, fill only certain emotional needs for him… there are definite limits to what I am capable of accomplishing.  Deep down I know that Adam loves me and appreciates me being here, but again I can only do so much.

Every morning Adam’s first questions are “when is mom going to get here?”  or “is mom on her way?”  When Cindy walks into the room, things are immediately better, burdens seem a little lighter, hope is a little brighter for all of us…I feel the difference and I know that children sense this much more that adults.

Mom’s play such a vital role; God gifted to women a certain endowment that we men don’t understand. Mom’s not only carry with them the power of life but they are the keepers of humanity. The humanity of Compassion, Love and Nurturing, those qualities that lift us above God’s other creations.

Cindy, thank you for being in all of our lives, for giving to our children that which I can not.  Together we are one; Apart I am nothing.

A Mother’s Love

Cindy, the glue that keeps our family together.

With every mountain you climb there is always the trip back down.  Adam has been climbing mountains;  Physical Mountains, Emotional Mountains and Spiritual Mountains.

Physical Mountains: Today has been the back side of the mountain for Adam; the swelling was worse, mostly on the left side of his head. His left eye was completely closed for the better part of the day. The nurse had to put ocular lube into his eye so that it would not dry out or become irritated.  Apparently blinking your eyes has very useful purposes, one of which is to keep your eye lubricated.   With his eye being completely swollen shut he could not activate those tear ducts to protect the eye.

” Oh yea, well you should have seen the other guy”

Adam’s right shoulder and arm continue to cause him a good amount of discomfort. There are several thoughts of why he is experiencing pain in this area. One; The  position the doctors had him on the operating table was such that he had his head rolled over and resting on his right side the entire time while they opened up his left side, in addition the tables are very hard and the doctors had something under his back to keep him propped up a little to help their access. Second thought: Adam’s brain might be swelling and causing pressure spots on his brain which in turn would have effects. This might be the most likely as his right hand today was making movements on its own and his fingers would keep going numb.  When he would tell me that his thumb or finger was numb I would put a good amount of pressure on those individual fingers to see if he could feel it, but he could only feel a slight movement, not the pressure. This sensation would come and go throughout the day. Three: His seizures are so violent that he has thrown his shoulder out and damaged the area.  The doctors ordered an x-ray and the tech brought in a portable x-ray machine to take a few pictures of this area. We have not found out the results yet.

He is still physically weak as he has not been able to eat since entering the hospital. His nausea is overpowering his instinct to eat.

Emotional Mountains: When we entered the hospital we were told by the doctors that Adam needed to have three seizures in order for them to obtain the data they needed to operate.  Yesterday Adam climbed this mountain and experienced two very large seizures, prayers were answered, spirits were high as we only needed to capture  one more seizure then Adam could go back on his meds and stabilize out.  Living with the threat of a violent seizure is like walking out of your air-conditioned house out into the heat and humidity of Central Florida in August.  It just hangs in the air always weighing on you, always pressing against your thoughts, always keeping you on guard watching for any signs of the demon waiting to be unleashed.

Adam was told today by Dr. Lee that he would need to have at least five seizures, not three, in order to obtain the needed data.  The two seizures Adam had yesterday were very helpful but they originated in different locations.  Before they operate to remove any portion of the brain exactness of location is required.  The first seizure yesterday originated in the left temporal lobe region; The areas of concern in this lobe are speech, language and memory.  By removing all or part of this lobe Adam could face losing partial  functions in each of these areas.  The second seizure yesterday originated in the left frontal lobe, as I understood Dr. Lee today this could affect motor skills.

When a seizure begins it spreads very rapidly across the brain; it can travel across the surface of the brain or it can travel through the brain in a matter of milliseconds.  Each tumor acts as a receptor or antenna for the rapid, out of control electric signal being unleashed in the brain.  The electrical signals find pathways in which to travel, either across the surface or through the brain.  These pathways can be as damaging as the tumor itself over the course of Adam’s life. If another tumor finds this pathway it can reignite the connections to other places in the brain and cause the rebirth of the demon once the original has been removed.

Tonight we find ourselves riding the avalanche of news down the emotional climb we made yesterday.  Adam is resilient, even in pain and discomfort he is willing to take the setback and return to the climb in hopes of finding the summit of health and wholeness; to live and understand as others do.

After Dr. Lee gave him the news today.

Spiritual Mountains: Adam is ever on an ascent to greater spiritual heights, the greater the physical difficulties the closer he draws to the Lord. I don’t see the back side of a mountain for him here. Even though he is in an extreme situation, where his personal wellbeing is at stake, he insists that we read the scriptures to him every night. Sometime ago the missionaries visited our home and challenged us to read the scriptures everyday; Adam took this challenge and has been true  and faithful to his commitment ever since.

The days get long and boring in a hospital room. There are few distractions from the pain and discomfort. The hospital has provided a nice flat screen TV with a number of channels and movies that are available. Adam, in his quiet way chose to avoid the media but simply asked me if he could listen to the music on my iPad. I got it out and found him a set of ear pieces so he could listen.  As I looked over his shoulder I could see he was searching for something in particular, so I asked him.  He simply said he wanted to listen to church music… my eyes teared up at the faithfulness of this young man and I found the music he was searching for through his one available eye.

We had a visit from the Hillis family this evening and Amy read to Adam a passage from a talk that Elder Holland gave entitled “The Ministry of Angels.” I quote “Usually (angels) are not seen. Sometimes they are. But seen or unseen they are always near… I testify of angels, both the heavenly and the mortal kind. In doing so I  am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face.”  We believe that Adam is always being watched over, many of you have been those angels in his life… Thank You… I also believe that there are forces on the other side of the veil lending him a helping hand, for he still has work to do in this life. He is determined to fulfill a full time mission.

There will always be mountains in life to climb and avalanches to face; when it comes to the spiritual realm Adam is a modern spiritual mountaineer, always  climbing to a higher exalted  peek.  Thank you for the quiet, humble example son.

Adam, a Gospel Bridge

Here are a couple of small victories for Adam on short videos.

Adam giving us a smile 🙂

I don’t know if you have ever spent the night in a hospital, but I wouldn’t recommend it.  It seems that every creation known to man that can beep… BEEP’S…and will beep all night long.  Have you ever tried to sleep through an alarm going off all night, well welcome to the world of modern medicine and life in a hospital room. If the illness doesn’t kill you, surely insanity will ensue due to sleep deprivation.

Adam’s left side is more swollen this morning, his left eye is completely shut and there is some facial bruising. We joke that “you should have seen the other guy.” His unconquerable spirit continues to inspire me. His right arm and shoulder are in a lot of pain… don’t know why, but it is making life very uncomfortable for him.

I was finally able to get the surgery video up and running and have attached it in the surgery post,  please remember it is a graphic medical procedure I hope to have other videos of his daily life up and on a post by later today or tomorrow.  Thank you again.

Seizures: Epilepsy is a brain disorder in which a person has repeated seizures (convulsions) over time. Seizures are episodes of disturbed brain activity that cause changes in attention or behavior.

Paradox: “A seemingly contradictory statement that may nonetheless be true. An assertion that is essentially self-contradictory, though based on a valid deduction from acceptable premises.”

When Adam first started having seizures in 2001 we were horrified and wracked with confusion. For anyone who has seen another individual have a seizure it is a very uncomfortable situation; there is not much you can do, you feel helpless; the old idea that they are going to swallow their tongue is a myth… so don’t put a bite block in their mouth.

For a parent to see their child experience a seizure, your emotional involvement is raised several magnitudes.. by factors of 10. I don’t think I can adequately express, nor are there words to describe the inner emotions you go through when you see your little boy or girl convulsing uncontrollably in front of you. The sheer terror of a scream in the middle of the night to come quickly… ” It’s Adam.” You just pray to God that it will stop. You pray that you might have your child back without too much damage. You worry that he might have a seizure in front of his peers and they will think that he is weird and will not want to associate with or invite him to their events… the list goes on.

For the past ten years we have fought a war against seizures, we have spent tens of thousands of dollars to keep them at bay. Days, weeks and months have been spent in doctors offices, pharmacies, and hospitals in hopes of controlling the demon that rages just under the surface, ready to explode at any time transforming our little boy from normal to social refugee.

Tonight we find ourselves living in a paradox, normally we flee and distance Adam from the world of seizures, but tonight we seek to embrace them; we find ourselves welcoming this dark companion from the shadows of our troubles.  You see, in order to battle this demon we have to meet on common ground, a battle ground and that battle ground is the surface of Adam’s brain. We are calling the demon out, we are lowering our defenses and inviting him to the fight.  Once he fires off his weapons of electrical energy we will know his hiding places and we will map them and destroy them.

By placing the 108 electrodes on Adams brain we can map, to a greater degree, the exact locations of the tumors that are the triggers for his seizures.  We have lowered his defenses by taking him off his medications, this is our call to come to fight; we are monitoring this battle ground 24/7 with some of the best equipment in the world.

The doctors need three seizures to collate the data in order to pin point the locations of problem tumors. Today Adam had two large seizures, the second lasted close to three minutes… dangerously long.  Exploring the boundaries allows us to understand the enemy’s territory. As with all wars there are casualties, Adam has suffered much but we hope to win this battle . The seizures have been an answer to prayers, yours and ours.. Thank you.

Adam has volunteered to take part in a study that is being conducted into epilepsy in order to help others who follow him. The team of doctors and engineers have set up additional steps and tests that he will have to go through in order to gain additional data. He is willing to sacrifice a little more discomfort in hopes that others might have comfort.

Today I seek for that which I thought I would never welcome, the Paradox of Seizures

Out of the chocks this morning was a slow start, but has been picking up a little momentum as the day progresses.

First: Adam has been able to speak much better and stronger, in fact he was able to carry on a conversation for a small duration.  A speech therapist came in and tested his verbal abilities along with certain memory items.  He did well!  Shortly afterwards an audio specialist came in to test his hearing.  There was a lot of people coming and going, pain medications were in the works so the test did not go well… not sure when we will retest to get a base line.

Adam is still not feeling well, yet he never offers a word of complaint, just a quiet note for information.  I have found that you need to read between the lines with Adam as he wants to tell you something, yet he doesn’t want to inconvenience anyone.  I am amazed at his strength and ability to deal with the situation.

Second: The physical therapist folks came in and wanted Adam to move around a little.  We put the chair next to his bed, chopped some of the rubber jungle down and prepared him to get up and move to the chair.  The rainbow boa wrapped around his head (all the lead wires) was our main concern, with the care of a mother deer to her newborn fawn we held those wires while he rolled to the side, slowly set up with his knee’s and feet over the edge of the bed and stood up.  Very little assistance, almost all on his own.  Next he slowly sat down in the chair… and has been there ever since.  At the moment he is sleeping.  He pushed himself a little too hard this morning by working with the therapist; On another note he did eat his first food.. yogurt..

Adam standing up for the first time since surgery.

Adam made two phone calls, his first call was to the Elders.. He wanted to see how the work was going and if Josh Whetman was able to make it to the appointment with them.  He loves the missionaries.  Mom got the second call.

Adam in the PICU

Post surgery in the PICU

Its been 24 hours since we left home and began the drive to Florida hospital. In a way, leaving home yesterday was symbolic as it was the commencement of a journey we have been discussing, debating and praying about for months, if not years.

“Oh my goodness, did we do the right thing in having surgery?” were the thoughts that pierced my mind this morning as I looked over at Adam. The realization that there is no turning back, that we have crossed a point and taken a direction that can not be altered. If we tried to go back to what we have known and lived with for the past 10 years what would be the consequences… well we just can not go back, that’s all there is to it.  The road we choose has options, but the options now are all different; there is a whole new set of rules and outcomes, actions vs reactions, choices and consequences;  as with many things in life there are no guarantees. It all feels surreal yet the force of reality is ever-present pounding my emotions.

Adam has been living in a jungle, a rubber jungle.  he has so many hoses, tubes, needles and wires connected to him; the nurses have to be careful every time they come in to adjust something as it ends up pulling or blocking another system.

The first day and first evening:  The doctors had him on a number of pain medications, so he slept the better part of the time. He had a difficult time speaking, a low muffled voice carried over scratchy vocal cords. Only a few simple requests passed his lips, never really asking for much. He seems so vulnerable yet he is such an Ebenezer of strength. He patiently endures the physical trials which are heaped upon him without  any complaints ever escaping his lips. What are his thoughts?… I have asked but only he knows.

The left side of his head is swollen and his left eye was forced shut by the swelling.  This morning I was happy to see both eyes as some of the effects of the trauma are decreasing.  They are not fully open but are getting better.

Yesterday he was unable to speak but very little, this morning I could hear his voice better; getting stronger but lacking strength to endure much conversation.  His mind is understanding and responding.. but why shouldn’t it?  The doctors only placed grids on the brain, they did not cut anything out.  There is a concern of brain swelling, so I asked him questions to see if he understands; I watch his eye movements to see if they track; I rub his arms and feet to ensure he feels them… And he does…. Forever counting our blessings, as simple as they might be.

The effects of the anesthesia have caused him to feel nauseous, there are medicines which help with this. Adam has not eaten in a day and a half, he has tried, but the cracker or drink is still making him sick. Last night he threw up; since he can not move his head and body out-of-the-way it went all over… my heart just broke seeing him lay there with everything on him. I tried to clean up as much as I could… called for the nurse but they were slow in arriving.. 5 minutes. We had to change his sheets, gown and blankets.. not an easy task for a big kid like Adam who can’t really move without a lot of pain, then there are the concerns of his head, the wires coming out of his head and all the lines, tubes and needles plugged into him; we had to be careful.

I am sitting next to his bedside listening to him breath, it’s a bit heavy but that’s ok… he is resting at the moment, a short sleep induced  by a dose of pain medicine administered via one of the IV ports. His right shoulder and arm are causing him a good amount of pain this morning; not sure why this is.  I asked for a doctor, the doctor who is assigned to this floor;  he never came and now Adam is asleep.  I think we really got the “B” team on the night shift… that’s not very nice, I am grateful for their help.

I have tried to relay to Adam all of your prayers and well wishes. He is in a little too much pain and is a little to out of it to grasp all the love and concerns coming his way, but as he regains his cognitive abilities he will be grateful and pleased for all that each of you do and have said. Thank you all so much for thinking of him.

Adam calling his mom to see when she would be there.

Adam will under go a several stage brain surgery. He is located at Florida South in room 5301.

After the Eagle Board of review last night and a celebration dinner we did not arrive at home until late.  Dixie, my mother-in-law arrived yesterday from Washington State to help with the girls while we are in the hospital.  After arriving home we spent a little time catching up with Dixie, Adam had to show her some of his prized reptiles…not sure what my mother-in-law thought of them… next it was off to bed , lights out at around 12:30am

The alarm clock was set to go off at 0430, but I was already up… been resting in the chair all night as Loren is sick and used my side of the bed which helps her sleep better.

Adam got up fairly well this morning… nice surprise… and we headed of to the hospital.  Traffic was light, so we made good time.  Cindy joined Adam and I in morning prayer, then sent us off with a hug and a kiss. She later joined us at the hospital at about 0700 after completed most of the chores… What a gal!!!

Mark & Marilyn visiting Adam

Adam got undressed and wrapped himself in a hospital gown and all the stuff that goes along with that. We had to give him a sponge bath… which he hated and protested againist.  Mark and Marilyn showed up unexpectedly and warmed Adam’s spirits; He has a great love for Mark and Marilyn and they reciprocate in kind.  When the nurse came to get him for the operation my heart hung heavy and my emotions wanted to run out of control. Cindy stood tall and kept the balance.  At 0930 we got a call from the operation room stating that they had begun the incision.  Several hours later we got word that they were putting him back together.

The surgeon came out a visited with us for a few moments; he stated that all went well and they they had placed 108 electrodes on the surface of Adams brain.  This was a greater number than planned but some of the early data suggested that they look more closely at a few different areas.

I have a few pictures and a video that I would like to post, but if you are weak at heart please don’t look.  Adam wanted this surgery and the next one photographed and videoed as much as possible.. the staff was kind enough to oblige…. I have not been able to load the video yet but will continue working on it.

I am posting a few of the pictures; they are graphic and may be uncomfortable to view. Proceed with caution.

Adam being opened up

Skull with wire leads coming out

After being put back together

We are back in the PICU. Adam has been resting, but is experiencing pain. His blood pressure has been too high; the doctors are monitoring this. I hope to be able to feed him so dinner tonight as it has been also 24 hours since he last ate.

Here a partial video of Adam’s surgery, it is graphic and not for the weak of heart.

Late Friday evening, Friday the 13th, Adam received written and verbal approval to commence his proposed Eagle Scout Project.  He quickly began calling individuals to see if they would be able to  assist him the following day.  After a nice dinner at a Chinese Buffet, Adam and I made a stop by Home Depot to see if they had any picnic table kits; only one store had some in stock but we had the wrong vehicle and the store was closing.  First thing Saturday morning we loaded up the trailer on the old Chevy van and headed out on the day’s journey to get the tables and other materials.

The first stop we made was to the bulk mulch site to pick up 4 1/2 yards of mulch.  Placing the mulch in first allowed us to load the tables and lumber on top.. as the tables were going to come off first…good thinking Adam.  Next we headed to the Home Depot on East Colonial and picked up 5 picnic table kits, three for the project and two for the ranch, in addition we bought 12 landscape timbers. Jen Singleton was there working and was a huge help… Thanks Jen!!!

We drove into our driveway just before noon, shortly afterwards we were followed in by several others who came to help. Bishop Hillis with two of his girls and Dan Bridenbaugh; from that time on we had a steady inflow of help.. how grateful we were for each soul who arrived to help with the project on such short notice.

Adam was making his rounds among the different groups assembling the tables, demonstrating leadership, directing and giving encouragement to others for the completion of the tables.  Part of becoming an Eagle Scout is the ability to show leadership and organizational skills.. where Adam normally likes to get his hands dirty with the rest, this time he had to refrain his normal impulses.

We’re here to work… ok we’re here to play 🙂

The work went well, everyone was so helpful and a pleasure to work with.  Adam did his best of getting around and ensuring that the tables were going together well.  Having the tables in a kit was a wonderful choice as it made a safer project, it was more expedient and easier to follow the instructions.

Mason: “alright Bishop and old man.. I mean dad, let’s lift all together now.”t.

We loaded the tables in their finished state back onto the trailer, lined up the caravan and headed to Bithlo, FL.  United Global Outreach, headed up by Tim McKinney, was the beneficiary of the project.

Once on site we framed in two picnic table areas with landscape timbers and mulched the area well. There were a few challenges with the area; we needed extra timbers, stacking them two high and pinning them together with re-bar spikes.  Thanks to Chris Dowdy and a quick response we were able to get the additional supplies in quick order.

Over all the project came out well and shows GREAT:  we had a total of 25 individuals who showed up to help. THANK YOU!

All for one and one for all

Finished Product

Our Son Adam

On a beautiful day in September 1994 Adam entered this world in a land or should I say on an island in the pacific.  He was born in Kailua Hawaii to a wonderful woman, my wife Cindy. If God were to come tomorrow and gather his elect, and from them make up his jewels, she would be the one of greatest worth; A true pearl of great price.

At age seven, shortly after moving to Orlando, FL. Adam started exhibiting petit mal seizures; we did not know what these were, nor did we have the knowledge to recognize them; we thought they were only an escape mechanism he developed to deal with some of the pressures he was experiencing at school from some of the other kids/bullies. On the morning of April 13, 2002 Adam went into a full grand mal seizure; from that day forward our family life has been different.

Adam was diagnosed with Tuberous Sclerosis with multiple tubers in his brain.  At first our neurologist, Dr. Ron Davis, was able to control the seizures with medicine, however it did not last long.  As the seizures returned, his medicine was adjusted; Multiple medicines with multiple side effects and in the end multiple failures. Treating or trying to control epilepsy with medicine is more of an art than a science.  We found ourselves over the years trying this and trying that only to see if it would work with Adam’s chemistry.

Slowly some of Adam’s skills began to deteriorate; two areas in general. One is his ability to process thoughts into words; his mind would know the thoughts to express but his speech processing center could not find the words to verbalize the thoughts. As it turns out one of the tumors on his brain lives in the general area of  speech processing causing interference with his language. A second area where we noticed an issue  is Adam’s ability to grasp and understand social situations.  One of his greatest joys come from social interaction with others; as interactions with others could take him to emotional peeks they would  also drop him into an emotional pit.  As others didn’t understand him and turned away, he turned inward not understanding the isolation.

With the deterioration of his skills, failure of multiple medications and being drugged on anti-epilepsy meds to the point of toxicity we prayed and searched for something else.  After several studies and many nights in the hospital the surgery option was breeched. We were in denial for a time; sought spiritual help and eventually we were introduced to Dr. Lee.  Dr. Lee is a neurologist recently transplanted to Orlando. He has had 10 years of surgical experience with epilepsy patients. He has put together a team of specialist to deal with this disorder.

After months of indecision, numerous nights of wetted eyes bound together by the chains of a broken heart; As a Child to a Parent, as a father to The Father I cried out to Him, Him whom we worship, if this is the path we should take.  No sound of cannons rang in my ears, no lights in the sky pointed to the path of wholeness, yet we found ourselves being gently nudged by a kind loving Father.

Today our son, Adam, entered on a journey that will most likely change his mortal experience.  As I have been typing, the doctors have been cutting… but more to follow on that.

Turning the clock back a few days, Adam, with the kind help of others was able to do the near impossible. Against the odds he was able to complete his Eagle Scout Project, present himself at his Eagle Scout Board of Review and become the newest Eagle Scout… at least for a short time…

Thank you for taking time to follow our boy… My heart is raised to a loftier sphere, my eyes are blurred by the tears of eternal emotions.  We so much appreciate your love and prayers.