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