BITTERSWEET DEPARTURE

Gene Drew McCain

May 4, 1949-October 1, 2009

"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain."

Philippians 1:20,21

"For I am already being poured out like a drink offering, and the time has come for my departure. I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day--and not only to me, but also to all who have longed for his appearing."

2 Timothy 4:6-8

After a long hard fight, Gene sweetly passed from this earth Thursday, October 1st at 1:50pm. He spent the last several days of his life completely enveloped by his loving family, who were at his side when he passed and will miss him dearly.

Thanking you for your prayers,

Michele

A celebration of his life will be held on Saturday, October 17th at 1 p.m.

North Coast Calvary Chapel

1330 Poinsettia Lane

Carlsbad, Ca 92011

For directions to the church: www.northcoastcalvary.org/?directions

In memory of Gene McCain donations may be made to:

North Coast Calvary Chapel

or

Muscular Dystrophy Association at MDA.org

or

ALS Association at ALSA.org

WE'VE ONLY JUST BEGUN...

Katy and Scott Leonard

Down the Aisle with Daddy


Me and My Girl

Weddings, weddings, and more weddings! For the past several months, our home has been filled with a flurry of wedding planning and activities; first with our oldest son, Joey marrying Kalyn on April 4th. This last Saturday, June 13th, our daughter Katy married Scott Leonard in a beautiful ceremony at our home that was filled with love, tradition, special people, and memorable moments. And finally, to keep the wedding theme going, today, June 17th, is our middle son’s 4th wedding anniversary—Happy Anniversary Mike and Meredith!

Saturday, June 13th turned out to be a beautiful day! It was Katy’s hope and prayer that her dad would be well enough to roll her down the aisle to Scott—her prayer was answered! Special people came from near and very far; people that will probably never get to see Gene again. Katy wanted to make the ceremony as memorable as possible; weeks before the wedding Katy had asked her dad to dictate some thoughts so that they could be read during the ceremony. This is the letter he wrote to her—

Dear Katy,

From the moment you were born, you have been a surprise and a joy. Our first surprise was that you were a girl; after having 3 boys, we thought for sure there would be a 4th! You have always been very feminine, but you fit right into our family full of boys and one mom. You loved camping, fishing, and sports. When you were 2 or 3 years old, we were camping in Yosemite, and I walked you through the forest on a pony named Brownie. You talked about Brownie for years after that; thinking he was your own pony! You were also quite a surprise at sports. You were an all-star softball player and I loved being your coach. We loved watching you excel in competitive gymnastics and seeing you walk up to the award podium.

You and I had special times at the father-daughter dances, when you were in Girl Scouts. We both loved oldies music and loved to sing the song “My Girl” together.

You have always laughed so easily. Our family could never finish a game of UNO because you could not stop laughing. You and I shared special laughs together when I would whip you up the hallways of hotels or a cruise ship, as if we were skating in the roller derby. You have always been my girl.

Today, I am very happy to know that I was your very first date and that you shared your first boy-girl kiss with me, but it is a privilege to have walked you down the aisle today to join Scott in marriage. And Katy, even though you have been a surprise to us and you have made us laugh, we are also proud of the fact that you have grown into such a fine young woman who is ready for the joy, love, laughter, and challenges of your new life with Scott.

I love you,
DAD

Katy and Scott knew they wanted to have a traditional wedding ceremony with traditional wedding vows.

I Scott—take you, Katy for my lawful wife,
To have and to hold, from this day forward,
For better, for worse,
For richer, for poorer,
In sickness and health
To love and to cherish, until death do us part.

Thinking back over the last few months, I cannot help but to reflect on my own marriage. Gene and I have been married for 33 years. Like most couples, we have experienced many ups and downs. Thirty-three years ago we made the same promises to each other before God. Today we are experiencing the worst of the worse; we have known health, but now Gene is very sick. Even in that, we promised to love and to cherish, until death do us part. We plan to keep that promise, no matter what.

Lately, we have been talking a lot about eternity. When we were young and newly in love, the song “We’ve Only Just Begun” seemed to fit our future together; it felt like we had forever out in front of us. But here we are, realizing that life is a vapor. Now, we can look back at those 33 years and we can say we are glad we kept our promises. If we hadn’t we would have missed so much. Marriage is an imperfect shadow of the reality of perfect love, but still worth the journey. In heaven we will always be able to say happily, “We’ve Only Just Begun.”

Kalyn and Joey--April 4th, 2009

Meredith and Mike--Happy 4th Anniversary


...as a bridegroom rejoices over his bride,

so will your God rejoice over you...The Spirit and the bride say, "Come!" Whoever is thirsty, let him come; and whoever wishes, let him take the free gift of the water of life.

Isaiah 62:5 & Revelation 22:17

Still just beginning,

Michele and Gene

A TIME FOR JOY

Mr. and Mrs. Joseph McCain

A friend wrote me the other day that she hoped that "mixed in with the bitter is some sweet to keep me going". I am not sure that we could have 'kept going' this past year with all of the intensity and sadness, if there were not some sweet moments as well. We have shared so much of our pain with all of you that today we want you to share in our joy.

On Saturday, April 4th we had an intimate gathering of close family at our home, as our son, Joey, and Kalyn Miller were married. Joey and Kalyn became engaged on Kalyn's birthday in January. They decided not to have a very long engagement, so that Gene might be able to be part of their special day. And so, in just a few short weeks the plans were made and we had a wedding! It was a beautiful, sweet ceremony. I had always dreamed of my own daughter in a beautiful wedding gown coming down our stairway on the arm of her father to her awaiting groom, but I never imagined that instead it would be my soon to be new daughter-in-law walking the isle with her father. It was very special and a day we will always remember.

Mr. and Mrs McCain and Mr. and Mrs. McCain

And if that were not enough to celebrate, our daughter Katy became engaged on Easter Day to Scott Leonard. And so in the midst of the drama of ALS, we are planning another wedding! Katy and Scott will be married at our home on June 13th. Gene will, Lord willing, have the honor of rolling his precious daughter down the aisle on her wedding day.

Scott and Katy

On May 4th we will celebrate Gene's 60th birthday. Gene has now lost the ability to eat food or drink liquids and he is receiving all of his nutrition through a feeding tube. He is also having a difficult time speaking. This week we are finally receiving his DynoVox--a computer device that will speak for him.

Our days are difficult. When we started this blog, I had pictured being able to write you every week and tell you how we were staying strong on this difficult journey. I have been humbled. It is hard; far harder than I could ever have imagined. We are grateful for some joyous times in our lives. We are so grateful for the loving support of our family and friends. We are grateful for all of you and that you still want to read our blog. I have written so many blogs in my head, but I am so busy that most of them never make it to the keyboard. Suffering can be so painful and it can cloud our thoughts. I hope to share some of those thoughts with you soon. Until next time...

There is a time for everything,

and a season for every activity under heaven;

a time to be born and a time to die,

a time to plant and a time to uproot,

a time to kill and a time to heal,

a time to tear down and a time to build,

a time to weep and a time to laugh,

a time to mourn and a time to dance,

a time to scatter stones and a time to gather them,

a time to embrace and a time to refrain,

a time to search and a time to give up,

a time to keep and a time to throw away,

a time to tear and a time to mend,

a time to be silent and a time to speak,

a time to love and a time to hate,

a time for war and a time for peace.

Ecclesiastes 3:1-8

Weeping while laughing,

Michele and Gene

A DAY AT THE SPA!

Spa Day!

Don’t let the smile fool you, our life is not a “day at the spa” right now. I have struggled so much with writing this particular blog entry that I am afraid I have failed to write anything for weeks now. I know that many people are concerned with how Gene is doing, but I have been at a loss for words. Due to our lack of spare time we are hoping that you will forgive us for our extreme tardiness in providing you with an update. We want you to know, however, that we have loved hearing from each of you who have taken the time to let us know that you are thinking and praying for us--for those that have sent emails, cards, flowers, brought meals, and given other tokens of love; you have been such a source of encouragement for us! We are so grateful, and we apologize that we are unable to respond to every person’s show of concern. In the past month we have had many experiences, insights, and challenges that we have wanted to share with all of you, but we will have to save them for other blog entries so that we can bring you up to date with what is happening.

Gene has lost most of his ability to move himself physically, except for some finger and facial movement. Even though he is unable to move most of his body, we have never been so busy. Our days begin so early and by the time our work is finished at night, it is very late. Gene usually wakes up in the middle of the night for various reasons. We do not have much down time in between; much of our time revolves around Gene's personal and medical care. We have a very small window in our day, usually in the afternoon, for anything extra--reading, receiving visitors, enjoying the sunshine, etc.. We will never again take for granted the pleasure of "leisure" time or the physical freedom to do the things we need to or the things we enjoy.

How can I convey in writing how difficult ALS is? We could not have imagined any of this in our wildest dreams. In past blogs we have told you about the business of our life, so we will not repeat ourselves here. Everyday is an overwhelming challenge. Like setting out on a dangerous expedition, I could never have imagined the obstacles we would encounter along the path of our journey; the pitfalls, and ordeals that we would encounter. The road on this journey has been crooked, bumpy, and treacherous. It feels very dark and scary at times; sometimes the way has seemed to be been hidden from us and we have felt very discouraged.

Even though our life is very hectic and consumed by the ravages of ALS, we thought we might share a lighter moment from our day with all of you. The picture above isn't exactly Gene getting pampered at some fancy day spa, though this is about as close as we will get to it now. This is actually how we get Gene's hair washed. Every couple of days or so, I bring out the inflatable wash basin and give Gene a good hair washing and a scalp massage while he lays flat in his bed--he loves it!

Here are some of the changes that have occurred since we last wrote to you:
1. We have ordered a very special communicative device; anticipating the gradual loss of the ability to speak. This device is called a Dynavox and is controlled by a system called Eye Gaze. Gene will be able to look at the word or phrase with his eyes and the Dynavox will speak for him.

2.We have made some modifications to Gene’s wheelchair because he is unable to drive it himself. This has not been especially successful. They added a very sensitive joystick that sits right in front of Gene, but it is so sensitive that Gene has not been able to gain good control over it. They also added an attendant control in the back of the wheelchair and this is typically how we move him around—very discouraging for Gene, as he is dependant on others to move him where he needs or wants to go. We have added a very supportive head and neck rest, as Gene is losing neck control and has a very difficult time holding his head upright. Also, they have installed special side supports for Gene to keep his upper body from falling over.

3. The ventilator and tracheotomy have been fairly manageable. There is care, maintenance, and lots of supplies, but it hasn’t been so bad. We were told to expect to spend 30 minutes a day to take care of the ventilator needs, however, 30 minutes is a great underestimate. Mostly our difficulties have been due to other health issues and immobility—the body is meant to be moved.

Again, please forgive us for not posting sooner. This has been such a hectic time, but also a very emotional time in our lives. We would very much like to share some of these thoughts with you soon. Until then, consider this…"I tell you the truth, when you were younger you dressed yourself and went where you wanted; but when you are old you will stretch out your hands, and someone else will dress you and lead you where you do not want to go"...God has said, "Never will I leave you; never will I forsake you." John 21:18 & Hebrews 13:5.

With Love,
Michele and Gene

PIP and PEEP!

Finally home!

Hi Everyone,

Happy New Year! After two long weeks, Gene came home from the hospital on December 23rd. Sorry to take so long with an update, but there has not been a free moment since coming home. Living with a trach and vent is an extreme measure and a very time consuming venture; but how wonderful to be home! Gene is doing well.

Our days are filled with all the many aspects of Gene's care and the steady flow of health agencies that are working with us. We are learning to adjust to the intricacies of home ventilation. A few weeks ago we would have assumed that PIP and PEEP were the names of little feathered characters in a children's book, but PIP and PEEP are settings that tell us if all is well with Gene's ventilator. I am learning to monitor all of the settings on Gene's vent that tell me if his breathing is normal and comfortable.

There is a lot of effort that goes into taking care of someone on a ventilator. I am sort of glad that I was somewhat naive to the amount of care that goes into taking care of Gene; I would have been freaked out. We had a nurse stay with us the first night, but now we have a nurse with us 6 days a week for 8 hours during the day. Even with that, taking care of Gene is a two person job. When someone is on a vent, they cannot be left alone and even with the nurse, we are consumed by all of the activities that are required to get through a day. I am told that things will get easier as we establish our routine and as I get more comfortable with the ventilator.

Okay, if you are squeamish you might want to skip this next part. For those that want to really know how Gene is doing and are curious about life with a trach and vent, here is a short version of what is involved:

Taking care of someone on a vent is not for the faint hearted. Someone with a trach is unable to cough or clear their own secretions; they must be removed by suctioning.--this is done several times a day. There is also a dressing that is always around the neck to absorb any secretions that accumulate around the stoma (the hole in the neck) and it must be changed at least twice during the day--I change Gene's three times a day because I am a neat freak. There is an inner cannula in Gene's neck that fits inside of his trach; this is changed every two days--this is still hard for me, but I am learning. We have 2 ventilators; one by his bed, the other on his wheelchair. All of the tubing and filters on both vents needs to be changed every week. We have lithium batteries and backup batteries, 3 ambu bags for emergencies, and replacement supplies that fill our bedroom. Gene is also receiving supplemental tube feedings through his stomach throughout the night while he is sleeping. Transferring between the bed and wheelchair with the vent is a little tricky, but we are getting the hang of it.

We are told that there is life after receiving a trach, though it takes time to adjust. We actually were able to attend church on Sunday. It was awesome to see friends in a normal setting.

Respiratory failure and infection are the leading causes of death for ALS patients. Many ALS sufferers choose not to have invasive ventilation because they believe the quality of life is too poor. For us, choosing invasive ventilation was a scary prospect but an easy decision; we believe Gene has much to live for.

Now choose life, so that you and your children may live and that you may love the LORD your God, listen to His voice, and hold fast to Him. For the LORD is your life...For to me, to live is Christ and to die is gain.

Deuteronomy 30:19,20 and Philippians 1:21

Choosing life,
Gene and Michele

HOMEWARD BOUND...

The McCain Boys

Gene's Girls + Oliver!

Whew; what a crazy few days! With many snafus, what seemed impossible this morning is finally coming together. What usually takes 2 weeks to pull together has taken us less than a week; not without alot of drama, I might add. We are coming home tomorrow and we will have quite the entourage with us; nursing, respiratory therapy, and the home ventilator company will be coming with us!

Gene is progressing nicely. I have learned alot this week; though it all still makes me very nervous. It feels something like when you take your first baby home from the hospital--I feel like I am going to break him and do something wrong.

This has been a difficult day (seems like we have had many of those lately). Getting things into place has not been easy, but I think everything is moving along now. I thought I would completely lose it today and when I was hunting for a certain business card in my purse, I pulled out this card out instead; it said: Patient endurance is what you need now, so you will continue to do God's will. Then you will receive all that He has promised. Hebrews 10:36

Ahhh, the exact words I needed at just the right time. I was able to calm down and reminded myself that God is for us and not against us, that He is our present help in times of trouble. Shortly thereafter, things started to happen; things began to be organized for tomorrow's homecoming.

This past weekend our kids were here and we had such a nice visit; they even brought Oliver! Gene was so encouraged to see his little grandson. Oliver was not intimidated at all by the hospital stuff and looked with curiosity at Gene's new apparatus. It made us all the more anxious to be home before Christmas!

Gene continues to gain strength everyday. He is eating well; getting into his wheelchair for several hours a day, and getting very tired of hospitals and being in bed for hours upon hours. He has lost strength in his arms since he was first hospitalized, but our hope is that once we get home and back to our normal routine of exercises, he will regain the strength he has lost. He is also tired of having people hovering over him at all hours.

These pictures are from our lovely visit with our kids. If we don't give an update to you before Christmas, we want to wish you Merry Christmas. This is a very different Christmas season for us this year. While others are out shopping and going to parties, we are being reminded that for some Christmas is lonely. Some people actually spend Christmas in the hospital or have no loved ones to spend such a special day with. We are also reminded that the importance of Christmas is not in all the things we have a tendency to get caught up with.

Who, being in very nature God,

did not consider equality with God something to be grasped,

but made Himself nothing,

taking the very nature of a servant,

being made in human likeness.

And being found in appearance as a man,

He humbled Himself

and became obedient to death--

even death on a cross!

Therefore God exalted Him to the highest place

and gave Him the name that is above every name,

that at the name of Jesus

every knee should bow,

in heaven and on earth and under the earth,

and every tongue confess that Jesus Christ is Lord,

to the glory of God the Father.

Philippians 2:6-11

Merry Christmas,

Michele and Gene

THE JOURNEY TOWARDS HOME...

Look how handsome!

Making a face for his daughter-in-law; right Meredith?

Gene trying to freak me out; he is always doing that! His way of making light of the situation.

Hi Everyone,

Well, now I know why they call it rehab! We have been pretty much full speed ahead ever since we arrived here on Tuesday about noon. We had hoped to leave Scripps Encinitas on Monday afternoon, but it got to be too late in the day. Secretly, I was relieved; the ICU felt like a safe cocoon where Gene was very well cared for and watched like a hawk. I knew things would change. Saying goodbye to all of the ICU staff was like leaving a family--we all hugged, and cried, as we needed to continue on in our journey. We are so grateful for the loving and aggressive care that Gene received in ICU.

They loaded Gene up in the critical care ambulance and I went ahead in my car--I cried all the way there. The first day at Continental was a little disconcerting and left me feeling that I had made the wrong choice. It was kind of a fiasco getting Gene settled; he was extremely uncomfortable and a little anxious with all that was going on. Things did not get any better right away, in fact went from chaotic to just down right frustrating. The first bed they had him in was too uncomfortable for someone that is unable to turn themselves, so they were kind enough to bring in a special air mattress bed--the only problem was that the controls did not work and in fact when we were all adjusting him, collapsed and fell to the floor with Gene in it! Everyone in the room about jumped out of their skin, including Gene. After we finally got that straightened out his new doctor walked in. I am embarrassed to tell you my first impression of her! She looks like a woman wrestler, or a rough and tumble soccer mom! I could not believe she would be Gene's doctor--she has actually turned out to be wonderful!

The funniest thing happened in the middle of the first night. Gene woke up to find 4 large women surrounding his bed--he was so disoriented from the sleeping medication he had taken that he thought it was a gang of thugs coming to get him. What they really wanted was to reposition him in bed. I am still laughing as I am writing this! I don't think Gene will ever forget it--I slept through it. Our son brought a nice twin bed from home and set it up for me in Gene's room so that I could sleep close by, but I slept through the gang encounter--what a great caregiver I am!

Wednesday was spent trying to get Gene settled and our trying to let the staff know how motivated we are to get Gene home. When we met with the doctor she began a fast paced process of making everything happen. Thursday was a literal whirlwind of activity. One of the things they did was to put a tube that had a camera on it down Gene's nose so that they could actually see how well he swallows. Being able to eat with a trache in place is a little different than normal eating. Gene did well and he was cleared to start on regular food after not having solid food for over a week! He had his first lunch and then dinner; he had all 3 meals today!

Our doctor is working with us to try to get Gene released on Tuesday--much faster than we first expected, but very welcome so that we could spend Christmas at home instead of a rehab hospital! However, there is so much to do in order to make that happen.

Gene is on the hospital's ventilator, but our new home ventilator was delivered yesterday and Gene was able to try it out with it on the back of his wheelchair and got to travel around the hospital for a short time; it isn't much bigger than a laptop computer--and weighs only 13.5 pounds! They supply a backup ventilator and all the other equipment that you need when you are on a vent.

We need to have home health and tube feedings set up, so we met with the home health agency that will be providing our home nurses. We also met with a company called Dynovox, which makes special computer communicative devices. Gene is not able to talk all of the time--I can explain that a different time, but the communicative device is an amazing computer. Gene can speak by either looking with his eye or a special sensing device that is on his forehead. All he has to do is point his head or look with his eye at the letters, words or phrases that he wants to say and the computer will be able to speak for him.

When we go home on Tuesday, we need to have all of these things in place. Going with us will be the home health agency and the ventilator company. I am a little nervous about how this will all work. It will be a little scary to care for him, but we want to go home. I will not miss the drama, the lights, and all the alarms going off in every direction.

I keep telling Gene how proud I am of him--he is working so hard to get better; he is amazing. He is fast asleep right now and that is where I hope to be in a few minutes. I just wanted to let all of you know that we appreciate your kindnesses, your prayers, and the fact that you care about what is happening to us; thank you.

I thought we would be able to entertain visitors here, but the activity is just too crazy. This weekend will be spent learning all the details of trache care and the care of Gene on the vent and visiting our kids.

Good night,

Michele writing for Gene

MOVING FORWARD...

Monday afternoon--speaking valve in and smiling at the girls in his room! Even with a Passey-Muir valve, Gene's sense of humor is intact. He was cracking jokes with all of us and thanking all the "girls" for taking such good care for him.

Sunday--Even after a bad couple of days Gene was ready for a challenge. With all kinds of tubes everywhere he enjoyed sitting in his own wheelchair to watch some TV! It's not as bad as it looks.

Good news; problems are resolving, the path is smoothing out! Gene is doing better! His heart rate has returned to normal and after even more testing, it was determined that his heart is absolutely fine. His tummy issues are resolving and they have started to increase his nutritional flow into his g-j tube. The tube in his nose is scheduled to be removed in a few hours, if things continue to get better. His stitches in his trache were removed this morning. In fact, the least of Gene's problems have had to do with his actual trache surgery. All of this progress is very good news.

The very good news is that everything started to improve yesterday. His brother came to visit him and they watched a little football together--always a good thing! We were also able to transfer Gene out of his bed and into his wheelchair where he sat for 2 hours. It was quite a production getting him moved, but totally worth it. I took a picture of him, as you can see.

Also, we are making plans to move Gene. We have chosen a hospital called Continental Rehabilitation Hospital. It is in Hillcrest and my daughter and I liked it very much. I have heard conflicting reports about when we will be moved. They have told us that the move will either take place this afternoon or sometime tomorrow. I will let everyone know.

I know that perhaps you may think Gene looks terrible in these pictures, especially if you are used to seeing him at his most handsome best. To be honest, I doubt I would want my picture taken if I were in the same situation, especially if my hair wasn't done and I had no makeup on! But, we somehow believe it is important that others see what is happening to Gene up close and in doing so, perhaps, they may find encouragement in the midst of their own suffering. These pictures actually represent a good thing--progress and hope; if you could have seen him Friday and Saturday, you would know what I mean. God has been gracious to us.

We want so much to thank you for your prayers, love, encouragement, and concern for us.

Please be encouraged...

I will lead the blind by ways they have not known,

along unfamiliar paths I will guide them;

I will turn the darkness into light before them

and make the rough places smooth.

These are the things I will do;

I will not forsake them.

Isaiah 42:16

BUMPS ALONG THE WAY

The Spirit of God has made me; the breath of the Almighty gives me life. Job 33:4

Well, I don't even know where to begin; it has been a very busy 72 hours. We have encountered a few rough patches along the way. I wanted to write last night, but everything was too overwhelming yesterday. Gene has had a few various obstacles in the journey to go back home; some have been minor and annoying and others more serious--

First, we were told and we planned that Gene would only be in the hospital a few days before going home. We were informed on the second day that home ventilator companies require a 2 week stay in an acute rehabilitation hospital. This was quite a blow and it was really upsetting to Gene, who thought he would be home by the weekend. The purpose of the rehab hospital is to get Gene and everyone involved in his care comfortable and familiar with his home ventilator and to train us in using the equipment and for caring for Gene. He will also be working with a speech therapist who will train him in effective use of his speaking valve, a respiratory therapist who will instruct us in the use of our new portable home ventilator, and physical/occupational therapy will be helping us make the transition back home with confidence--traches and vents can be a little intimidating for most of us.

The second setback was a complication from Gene's feeding tube surgery. His digestive tract quit working and he was in excruciating pain. I'll spare you the details, but we are back in business again. Because it caused a setback, they need to rest his tummy before trying to feed him through his new tube, which is called a g-j tube. He hasn't had any nutrition since Monday.

Third, Gene also developed more mucous secretions that caused some breathing obstructions, which leads to a sense of panic and fear. Because of this and because of his tummy problems, it was decided to put off using the Passey Muir valve for a day, so that Gene could rest.

Friday morning Gene felt he just had about all he could take and he felt very discouraged. He has been put through a tremendous amount physically since Tuesday. The one bright spot of the day came when the chaplain of the hospital, who happens to be one of our pastors at church and a good friend of Gene's, came for a visit. He read to us from Mattie Stepanek's book "Heartsongs". I have heard some of these poems before, but was newly touched by the insights of this little boy that suffered greatly in his very short life. We received encouragement through the depth of wisdom as we listened with fresh ears to the words of Mattie, who was also afflicted with one of the Muscular Dystrophies.

We also had a plan to use the Passey Muir valve, but unfortunately our second experience was not very successful. The respiratory therapist was not as adept at setting the correct settings on the ventilator as our first therapist was and as a result, Gene had a very uncomfortable forceful flow of air every time he exhaled. This force of air is very uncomfortable and caused Gene to feel like he was not getting enough air to breathe. After a couple of hours, he was overly exhausted and it was decided to remove the valve and let him rest.

Today is Saturday. We had hopes of trying the Passey Muir valve today, but Gene was unable to clear enough secretions that would allow enough air to pass around the valve for effective speech. The vocal cords must have a flow of air over them or sound cannot be made.

I also had a plan to drive down to San Diego today with my daughter to visit 2 different rehab hospitals, to see which one would be best suited for Gene. While we were at the first facility, I received a call informing me that Gene was having a rapid heart beat and that he had a low grade fever. The first thing the doctors fear is a possible blood clot, due to his immobility. Gene had an ultrasound on both legs, which was negative. Because it was negative, they had to do a CAT scan to make sure he did not have a pulmonary embolism--he doesn't. He also had an EKG which showed some form of tachycardia, so they performed many tests to make sure it wasn't a heart attack or heart failure--it was not. They did find some concerns with his lungs, which leads them to believe he might possibly have an infection. They have started him on 2 antibiotics, just in case. His fever is down and he is now resting comfortably.

Because of all the setbacks, they have put off trying to feed him through his feeding tube until things settle down. We pray that will be tomorrow.

As of right now, we think that on Monday or Tuesday he will be transported to one of the rehab hospitals for one-two weeks. I will keep you posted.

Why do you complain to Him that He answers none of man's words? For God does speak--now one way, now another--though man may not perceive it.

Job 33:13-14

How is Gene?

"For I know the plans I have for you", says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11

Hi Everyone,

I know that many people are wondering how Gene is and I have received too many emails to be able to answer each one individually; please forgive the impersonal nature with which I am giving information. We are so appreciative of your emails, prayers, cards, encouragement and your sincere concern. This is the first time I have been able to get on the Internet since Gene's surgery. I now have Internet access in Gene's ICU room and while he is resting quietly, I thought I should write a quick entry to let everyone know how he is doing.

Day #1: Tuesday morning we arrived early at the hospital and of course Gene was joking with his nurses as we waited for his surgery. The anticipation was overwhelming and stressful. Our daughter accompanied us and a couple of fantastic friends were here waiting here for us. We were also greeted in the hall by a couple of our pastors and it was such an encouragement to see them and to have them pray for Gene.

Gene came through the surgery well. When Katy and I were escorted into the ICU to see Gene minutes after the surgery, he had a huge grin on his face and we all shed a few tears. He was very peaceful and the ventilator was doing its job. They said he would sleep alot the first day; he was wide awake the whole day! The first day wasn't so bad.

Day #2: Learning to adjust to a tube in your neck that is attached to your source of breath is a very big adjustment for someone to make. I will never look at anyone that has a trache the same. The second day was a bit rougher than the first. I am sure that you do not want to hear all the details about secretions and suctioning and stuff like that, but it is a different experience to say the least.

On the second morning Gene was scheduled for what is called a PEG tube. A PEG tube is feeding tube that is inserted through an endoscopic procedure, however, they were unable to visualize the correct position and could not continue. So they had to put it off until the next day and use a different procedure. Most ALS patients end up needing a feeding tube because they are no longer able to swallow safely or, as is the case with Gene, his arms are too weak to bring food up to his mouth and he doesn't eat enough to maintain adequate nutrition. He will still be able to eat food with the trache, but he needs an additional nutritional source.

A very bright spot in the day was when the Speech Pathologist came to test Gene's ability to swallow and to teach him how to use a Passey-Muir valve, a special valve attached to his trache so that he could still talk. It worked and in fact the quality of his voice was much better than everyone anticipated! It was fun to have our kids come to visit and for Gene to be able to actually talk to them--they were amazed! He sounds a little bit like Christopher Reeve, but it is still Gene's wonderful voice!

Day #3 Last night wasn't such a great night. We haven't slept much and Gene was bothered by the increase in secretions and had a couple of bouts of difficulty--feeling like he was choking and not able to breathe. Of course, you can imagine the sense of anxiety and panic that it must feel like to depend on a machine for your breathing. They also had put a tube into his nose that travels down into his stomach to prepare him for the next feeding tube procedure. Not only does Gene have a trache tube in his throat, but a naso-gastric tube as well; not much fun. But, the feeding tube procedure was successful today! Gene has had moderate pain from the feeding tube site and hardly any pain from the trache. They have moved him onto a special bed that rotates the pressure on his body because he is unable to change positions--this has been helpful today.

Gene will be in the ICU for a few more days and we are making the plans for what will happen when he is discharged, when I have more information I will write again. Unfortunately, in the ICU visitors are limited to immediate family and pastors, however, it is such an encouragement to Gene when I tell him about everyone that has sent their love and prayers.

Until next time...

All our love,

Michele and Gene

UPDATE...

Oliver bringing Grandpa flowers!

Hi Everyone,



We are taking a break from our usual format of blogging because we want to post a quick update and to let all of you know what is happening in our lives. The past few weeks have been very busy and challenging for us. Gene's breathing capacity has diminished significantly and to make a long story short, we have decided to have a tracheotomy. We have chosen a surgeon and the surgery is scheduled for tomorrow, December 9th. The trache will allow Gene to be completely supported by the ventilator; he will no longer have to labor for each breath. This will be a good thing, because Gene expends a great amount of energy with every breath, even though he is using non-invasive ventilation 24/7. He will be in the hospital for a few days so that he can be observed and so that I can learn how to care for his trache and vent. We will also be lining up nursing care that will begin helping us in our home. Please pray for us; pray especially that Gene recovers quickly and that he will be protected from infection. Pray that we learn to adjust to this big change in our lives. Gene and I strongly believe in the sovereignty and providence of a loving God and we rejoice in Him, even in the midst of our affliction.



On another note, Gene has been seeing a physical therapist that comes to our home and works with Gene. This has been very beneficial and is helping Gene to maintain what strength he has and to actually see some improvement in the muscles that still function.

This is the day the LORD has made;

let us rejoice and be glad in it!

Psalm 118:22

We will keep you posted!

Gene and Michele

THE THREE THINGS

Thomas Oliver McCain

July 18, 1979-November 19, 1998

Time flies. Even though it has been ten whole years, I can remember everything about that day, right down to the smallest of details. I remember what the weather was like, I know what I wore, what I ate, what I did, who I talked to, I even remember the music that was on the radio, and I can still remember every word of the phone call that brought the news about Tommy’s accident; I remember everything. It is hard to believe that it has been ten years today. Ten years is a long time, but November 19, 1998 seems like it was yesterday.

Today our family marks 10 years since our son Tommy was killed in a terrible accident. I have often wondered how we might commemorate the 10th anniversary of Tommy’s death. I thought that, somehow, today should be made special; after all it has been one decade. We still miss Tommy incredibly. So many things have changed in 10 years. Never could I have imagined that Gene would have ALS, or that I would be writing a blog entry to honor Tommy; instead of making the day special.

I’m not sure if it is true, but it is said that losing a child is one of the most painful experiences a person can have. I do know, however, that after a few agonizing weeks of paralyzing grief, I knew that Tommy would be the last person who would want me so emotionally crippled with sorrow. After all, I still had a family to care for and responsibilities to take care of; life has a way of marching on, no matter how bad you hurt. I knew that Tommy would want me to have an outlook from God’s perspective of eternity, and so I imagined what Tommy might say to me if he could come back from heaven just long enough to encourage my grieving heart. Three things immediately came to my mind in vivid detail. In the 10 years since Tommy’s death, I have not forgotten the three things. They have been a catalyst in helping me to be able to continue on in life without caving in completely, and they have helped me through many far less challenging times since then. Now in the face of the darkest of all trials, Tommy’s words once more are reminding me to maintain a perspective that looks at our situation, not with eyes of flesh, but from the edge of eternity. And so today November 19, 2008, in Tommy’s honor and in his precious memory, I would like to share the “three things” with all of you.

In my mind, I could clearly picture Tommy coming to me and giving me a great big hug and saying, “Mom don’t be sad, it’s all going to be okay; you will like the end of the story”. And we know that in all things God works for the good of those that love Him, who have been called according to His purpose. Romans 8:28 is probably the most loved promise in the entire Bible. It reminds me that God’s ways are very different than mine. In the book of Genesis, Joseph’s brothers hated him so much they made a plan to sell him into slavery. When Joseph is finally reunited with his brothers and they cry to him for forgiveness, Joseph tells them, “You intended to harm me, but God intended it for good to accomplish what is now being done”…Genesis 50:20. The brothers may have thought they were in charge of their plan to get rid of their brother, but God intended to work out His own plan. God always has a plan and His plans are always good and loving. The LORD foils the plans of the nations; He thwarts the purposes of the peoples. But the plans of the LORD stand firm forever, the purposes of His heart through all generations. Psalm 33:10,11

The second thing I imagined that Tommy would have said to me was, “Mom, life on this earth is very brief, make the most of every opportunity God gives.” Be very careful, then, how you live—not as unwise, but as wise, making the most of every opportunity, because the days are evil. Therefore do not be foolish, but understand what the Lord’s will is. Ephesians 5:16 17 If I live with my eyes fixed only on this life and the cares and circumstances that I see, I will miss seeing them from God’s perspective. God gives to each of us opportunities to bring Him honor. The deep lessons of suffering and pain are learned only in this life and are achieving for us an eternal weight of glory (2 Corinthians 4:17). Even suffering and affliction are opportunities to bless God, bless others, and to do good. May I not be so consumed with my own pain that I miss seeing the pain in the lives of others.

The third thing I imagined Tommy saying to me was, “Mom, heaven is beyond anything you could ever imagine!” I can’t begin to imagine what the glories of heaven will be like; we will never exhaust the wonders of heaven, or grow tired of being there. Heaven will be a place of reuniting with Tommy and others that I love, but what will make heaven be greater than anything I could ever imagine is, God Himself; God dwells there. Now the dwelling of God is with men, and He will live with them. They will be His people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. Revelation 21:3-4

Second only to God and His word, Tommy has taught me more about living with an eternal perspective than anyone else; looking at life from the perspective of God’s incomprehensible plan, instead of through my own finite and simple mind.

In the back of Tommy’s Bible is a poem that he wrote toward the end of his brief life. Though his theology is not perfect, Tommy had a grasp on eternity that far exceeded his 19 years.

MY FATHER

He is grace full

He is loving no matter what I do

He has great mercy I cannot explain

His way is righteousness, truth, and forgiveness

He lives forever

My Father loves me so much that He died on the cross to pay for my soul.

My Father loves me and you

Please do not forget or you might miss Him

He is coming real soon.

Yes, Tommy, He is grace full; full of grace and truth. Thank you, Tommy, for helping us to see with an eternal perspective the grace that is so freely available to all of us. That is something we would like to share about next time.

Until then...

Thinking of Tommy,

Gene and Michele

A VOICE IN SUFFERING...

Now faith is being sure of what we hope for and certain of what we do not see. This is what the ancients were commended for. Hebrews 11:1,2

It is a fearful privilege knowing that people actually read our blog and are even asking others to read it, as well. Though it is an honor that you would care to be part of our journey, it also feels like a tremendous responsibility to us, and we do not it take lightly. We want the things we write about here to make a meaningful difference in the lives of those that check to see what is happening to us. We want the words we say to be thought provoking, not unhelpful or hurtful; certainly not tinged by an attitude of hypocrisy or self-righteousness. There is a weight of seriousness upon our life right now. It seems as though we have been granted a unique opportunity to be a voice in the lives of others in the midst of our suffering. Though there is a great inadequacy within us, we want to express the thoughts and intents of our heart. And so today, we will make our attempt to be as authentic and as transparent as we know how to be. We would like to share with you some of our low points; the not so good thoughts and feelings we have had up until now.

We have been under some intense and stressful circumstances lately. I have to admit that this whole ALS thing has been a lot harder than I ever could have imagined. Right from the beginning, I had read about the progression of the disease and what was to be expected along the way. Intellectually, I knew what was going to slowly happen, but actually living through it has been completely different. Now that it is happening, and not so slowly I might add, it is like trying to stay ahead of an enormous tsunami—it’s just too big to keep out in front of without being overwhelmed by its powerful force. Gene’s condition continues to deteriorate. At this time, Gene is confined to his wheelchair, his recliner, or his bed. He can do very little to care for himself. The lack of mobility is very hard on his body, and he is uncomfortable often. Everyday his weakness is more pronounced, including his diaphragm.

These past few weeks have been hard for us. We have never been under as much stress as we are right now; far beyond my own ability to endure. With frayed emotions, I have been surprised by my own inability at times to cope with the challenges and to hold it together. Nothing about any of this has gone smoothly or easily; everything has had a struggle attached to it. There have been difficult obstacles and challenges to face every day; some seem insurmountable. Emotional fatigue has worn heavily on my ability to tolerate frustrating situations. I get so frustrated and angry with some of the agencies that we deal with when things don’t go right, which is often. I lose my patience easily when a piece of equipment doesn’t work the way it is supposed to; nearly, every day. I want to scream when someone parks in the handicap space, but they have no handicap sticker displayed on their car and there is nowhere else for us to park. I feel so frustrated when I am not physically strong enough to help Gene do something he wants or needs to do. I am completely overwhelmed at times when we have so much that needs to get done in a day’s time, and I can’t possibly get it all done. I feel extreme sadness when I know how hard it is for Gene to sit passively by, unable to help or participate in his own care. I feel resentful and my heart is grieved because we can’t do the things we used to do together. I feel angry that ALS is robbing me of my husband.

We have also had a number of disappointments that have put me over the edge and have left us feeling sad and discouraged. The relentlessness of Gene’s ALS and the demands of the situation have broken me. I admit ALS has brought out the very worst in me. I am ashamed sometimes at my reactions, and I have been surprised by the darkness of my feelings.

I can only risk sharing with you my true feelings of frustration, resentments, and the depths of pain and despair because I don’t believe I am unique. Everyone, at some point, has come up to the edge where it feels like we cannot take it any more. Whether we are willing to admit it out loud, or we keep our feelings deep inside, God is fully aware of the true condition in our hearts. We cannot fool Him.

Sometimes when we are experiencing the deep depths of pain, we find it challenging to navigate through the darkness. Though we see through a glass darkly, we can hear from the voices of those that have suffered before us. God has provided in His word the voices of many that have suffered far deeper despair than I have. Though I am very encouraged by a number of others, I have rekindled a friendship and have found a suffering companion in the Book of JOB. In his deep suffering Job has given voice to my suffering.

All that Job possessed on this earth was suddenly taken away from him, including his beloved children. But, if that were not enough Job is tested again to the limits of his human capacity when he is once more struck; this time in his own body. Job becomes covered in painful sores from the top of his head to the soles of his feet; it is more than he can take. In all of Job’s losses he did not sin by charging God with wrongdoing. But, what I appreciate most about Job is his honestly in sharing his feelings of hopelessness. Surrounded by the darkness of his desperate situation, Job plummets into a pit of despair. Blinded by the immensity of his pain Job cries out, “If only my anguish could be weighed and all my misery be placed on the scales!” Job 6:1.

After Job’s long and painful discourse, God finally answers Job out of the storm. Though God never gives Job an explanation to his very painful circumstances, Job confesses he spoke of things too great for him to understand and things too wonderful for him to know. Even before Job’s life is ever restored to “normal”, he is able to persevere in suffering “because he saw him who is invisible” Hebrews 11:27.

The strain and the stress of a protracted trial can cause us to lose sight of our vision of the invisible. Though God seems to hide Himself at times and our circumstances do not change, our hope is restored when we are able to see Him who is invisible.

Gaining an eternal perspective in the midst of deep pain is something we would like to share with you about the next time. But, until next time I will gain my footing again; God is faithful. We are fixing our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18 …This is what the ancients were commended for. Hebrews 11:2

Until then,
Gene and Michele

Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Savior and my God.

Psalm 42:11

A 'Dream' Come True!

An Amazing Group of Friends and Family

Our Amazing Daughter, Katy

Our Banner Proudly Waving!

Gene's Special Interview

Oliver hitching a ride with Grandpa

Just enjoying the scenery

Here we come!

So Many Great Friends!

"Faster Oliver, we are almost there!"

"What's everyone looking at?"

Oliver chill'in with the team!

"What's for lunch?"

Thank you to everyone that made GENE'S DREAM TEAM a ‘Dream’ come true! Sunday, October 19th was a beautiful day at the De Anza Cove in San Diego! It was a beautiful day because 51 of our family and friends came to support Gene and participate with us in the 7th annual Walk to Defeat ALS. There were many others that were not able to be there, but also showed their support with kind well wishes and their generous donations on behalf of Gene's Dream Team; we thank them as well! I don't know what the final dollar figure for our team is, but it cannot compare to the great reward of knowing that we are loved and cared for by such wonderful people. Words of gratitude are insufficient to say thank you to everyone that participated!

How wonderful it was to spend time together with good friends and our dear family and to see those friends and family that we do not get to see on a regular basis. We are especially thankful to our wonderful kids who helped us with all the little details and practicalities; they have been a great source of encouragement to us every step of the way. Even our 15 month old grandson Oliver got into the act! He enjoyed riding with grandpa on his wheelchair and afterward sitting on any empty beach chair that he could find!

Gene was also unexpectedly interviewed by CBS affiliate KFMB TV News 8. Unfortunately, we did not see it aired, but we have heard that it was on the 6:30 PM broadcast. We are working on receiving a copy of it and if there is anyway that we can put a link to it, we will do so. I was so proud of Gene as he spoke quite eloquently words from his heart about the disease of ALS, his friends and family that were there, his sense of being part of something much bigger than himself, and his gratefulness to his Lord and Savior Jesus Christ.

All together, there were about 2000 people that participated in yesterday’s Walk to Defeat ALS. During the walk it was such an encouragement to see all the various walk teams supporting their own friends and family that are afflicted with ALS. Many people with ALS were able to participate with their teams using their wheelchairs, scooters and walkers; it was sad and encouraging at the same time to see others in various stages of the disease. There were, also, those that were walking in memory of a loved one that had ALS and have since died.

It is hard to imagine that only 9 months ago ALS was not something we ever gave thought to, because we did not know anything about it; now it has changed our whole world. ALS has brought out the best and the worst in us; that is something we would like to share about with you next time. Not only that, ALS has given us the opportunity to be reminded how very important it is to be connected to a community of family and friends, sharing our lives together and caring for one another.

If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!

Ecclesiastes 4:10

With loving gratitude,

Gene and Michele