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