It All Comes Down to Trust

Today is significant because things have shifted rather suddenly, and all indications are that I have only about a month to live. On the morning after Christmas I woke with a letter in my mind, and I got up early to write it to our children. When Jim woke up, he read it and wept. When my dad and stepmom awoke, we shared it with them. It was a very tender, sweet day as the kids also responded one by one to the letter they had received.

At first I was going to modify it for the blog, then I realized that you, my faithful readers, have appreciated hearing how it really is. You might as well know the details.

So, I give you permission to “listen in” on the letter that I wrote to our children yesterday morning. Please note that at the end of this letter are some details about the end-of-life decisions I have made.

***

Dear Paul, Kristin, David & Rhonda,

As I look back over these 18 months, I can see that there were phases of my illness, and there was always a juncture that marked the beginning of the next phase. I remember in October when my steps first faltered, and in April when I could no longer carry on my exercise regimen. A few months later I needed my little “shopping cart” for a few things…then came the walker. There was a similar progression with my speaking.

I never rule out the possibility of a divine healing, but if that doesn’t happen all indications are that we’re at another of those junctures. I believe that the difficulties of this week are indicating that I am entering the final phase of my life. It seems that several of my systems are shutting down.

Lung Capacity
On my last visit to the doctor, my lung capacity was measured at 68%. It feels significantly less now. I can’t get a deep breath. Doing the smallest thing causes me to be short of breath. Do you remember as a child after a long hard cry, your body would give a little “after sob”? My body does that often now. I think it has something to do with my lack of oxygen.

Swallowing
This week my swallowing ability changed considerably. Last week I did better if there was a little bit of texture to the food. This week, suddenly, I can swallow nothing with texture. Even pureed foods are going down slowly, if at all. I’m going to try the liquid nutrition, but even liquids don't always go.

Heart
It doesn’t seem to matter what I do, my heartbeat elevates. Simply turning over in bed will do it. Because we have the clock that shines on the ceiling I’ve been able to monitor my heart rate and count the beats per minute. My normal resting rate is 68-70. Turning over in bed can kick it up to 90 for several minutes. Getting up and going to the bathroom I believe has several times pushed me into Atrial Fibrillation.

As you may remember, for the first two years of my A.Fib. saga, the bouts would occur monthly. Last fall it switched to every three weeks, and then a couple of months ago to every 9-12 days. In these last few weeks it has been much more frequent. This week it happened twice in three days. The trend is clear.

Circulation
For several months I’ve been having significant circulation problems, so my lower legs and feet are usually icy cold. My sweet husband is alert to when the heating pad may be cooling off. (This amazing man is a “book” of his own!)

Mouth
My tongue is so strange. It’s deeply encrusted with yellow stuff. I read online that this is normal for ALS patients. My breath is bad no matter what I do. My gums are also sometimes swollen. Even my teeth have slid around a little bit, making my bite off. The teeth on the lower left side of my mouth are now tipped slightly out, causing me to bite my cheek several times a day. It makes it hard to manipulate anything in my mouth. Anyway, my whole mouth and throat seem to be crying.

Bowels
My bowels have not functioned normally for months, probably because I’m not eating very much bulk and I'm not active enough. Suppositories have been necessary for quite some time to get anything to happen, and they’re not even working that well now.

Hydration
I try to drink enough water, but my mouth and throat are excessively dry at night. I’m using the chin strap to try to keep my mouth and lips closed while sleeping, and it helps; but still the last 3-4 hours of the night involve regular swishing, because my mouth becomes bone dry every 30-45 minutes.

Strength
I have a few little ways to measure my strength like stepping up from the family room to living room, lifting myself out of the bath, walking up the ramp from the garage, and getting up from the couch in the family room. Yesterday I noticed a considerable difference in coming up the steps at David’s. I could barely get my legs to the next step, let alone exert any pressure to lift. And last night I couldn’t get up off the couch without help. Whereas, one week ago I came up our basement steps unassisted.

Muscle control
My drooling has become a nuisance. I just can’t keep my lips together. Also hand muscles revolt at the simplest demand. Just picking up a glass of water or trying to fasten a snap can make my hands contort.

Body Weight
My body weight is telling the tale. Over 18 months I’ve gone from 158 (71kg) to 102 (46kg).

How Long?
Only God knows how long I have, but Dr. Rolak did say that once a person can’t eat, the maximum is about a month; and that’s if they can take hydration, otherwise about a week. I’m not there yet, because I can still drink and eat a little bit of pureed foods, but these last few days have jolted me to attention. I can see it coming soon.

Hospice
We met with two people from the Hospice team and they are ready to begin when we are. We decided to wait until after my January 8th doctor’s appointment. Then we will probably begin with them the next day. That means that we will have regular medical and practical support here in our home. What a blessing!

Bright Spot
In a way I’m glad it is turning out this way. All along I have prayed that I wouldn’t have to become totally incapacitated before I died. The thought of living in the “Power Wheelchair” has not been appealing to me. That involves a whole new set of equipment and function, including a van to haul me around. I don’t want to go there--for my sake or Jim’s. I’m happy that I can still bathe myself, and I’m glad I can still easily write on the computer and use my ACD (speaking machine). And I’m exceedingly grateful that my mental capacity is fully intact. So, if the end is coming before these things also fade away, I see it as another BIG blessing.

Smile
Jim and I have a little private joke. Here’s how it goes:

Jim: “Are you praying for healing? Because God seems to be listening to you!”

Me: “Of course, I pray every day for healing. I DO want to live.” (He always teases me saying that maybe I want more to be in heaven than to be with him. Smile)

Jim: “So what is God saying back to you?”

Me: “He always says the same thing to me: ‘You’re in my hands…trust me…I love you.’”

Jim: “Well, I guess we’ll have to wait and see.” (At this point I usually get a big hug.)

(smile)

Well kids, it all comes down to TRUST, doesn’t it? Let’s continue to trust Him together.

Thank you for the loving support you have been to both of us throughout this whole story. You’re the best kids in the universe!

Love,
Mom

Now to My Blog Readers
My end-of-life choices:
Since the beginning, my doctors have been open about the choices we would need to make. Some ALS patients opt to be attached to life support: feeding tubes and ventilators. After hearing all of the details, I (with my family’s support) have chosen not to have those for two major reasons. First, because they often introduce other painful complications, like pneumonia and infections. Second, because at some point one of my loved ones would have to decide when to have me unhooked from the machines. I don’t want either of those things. It was surprising to learn that choosing not to have a feeding tube is the least painful way for an ALS patient to die. Because the amount of food decreases gradually, there is no sensation of hunger, and no pain. The patient just becomes sleepier. This is the gentle, natural way to go. It seems right for me.

mm

P.S. I had fun buying the grandkids' gifts this Christmas! :-) (The girls were here at Thanksgiving time, but we were with the boys on Christmas day. Fun stuff!)

Jolene got a personalized peg board.
Elliana got a personalized ladybug backpack.
Micah got a personalized train.
Levi got a personalized train backpack.
Reuben got a personalized lunch pail.

P.S.S. It's just lovely that my dad and stepmom could be with us for this whole holiday season (Dec. 22-January 3). We're having a relaxing time, and have played Mexican Train Dominoes several nights. Oooo-eeee I got beat really bad! (smile)

Our Christmas Letter

The virgin will be with child and will give birth to a son, and they will call him Immanuel, which means God with us. Matt. 1:23

Hi,

What an unusual but blessed year we’ve had! As most of you know, June 21, 2007, brought the news that Maralyn has ALS, a degenerative neuromuscular disease. So last August we moved back to the States to facilitate her medical care. It sounds difficult, and in a way it has been, but we have been keenly aware that our Lord is Immanuel—God with us. We have been looking back over our lives and celebrating God’s presence among us all along the path. We can see…

• How blessed we were to both be raised in loving families who pointed us toward God.

• How fortunate that we were both at Evangel College at the same moment and found each other there.

• How God gave us many lifetime friends during our years at Evangel.

• How it was God’s good plan that we chose Wisconsin as our first public school teaching location—a place where we would live 17 years before our missions work—and a perfect place to land afterwards.

• How God arranged a work trip to Brussels in 1984 which became the launching pad for our missionary teaching career.

• How God gave us the privilege of preparing hundreds of young people for ministry.

• How God gave us the gift of pastoring the international church in Helsinki for one year.

• How God protected our boys and helped them thrive through our missions experience.

• How God brought two beautiful daughters-in-law into our life, both from godly families.

• How God gave us five grandchildren to love…and there’s a sixth one on the way! David & Rhonda are expecting their fourth and it is due on Maralyn’s 60th birthday. (And we now know that it's another boy! How cute is that?!)

• How rich we are with friends…like YOU!

It’s clear that Immanuel has been with us all along the way, and His presence still graces every day!

This photo was taken when our family was together over Thanksgiving.

Merry Christmas from both of us!
Jim & Maralyn

P.S. If you've been following my story from the beginning, you may remember that the doctor said that I probably had 12-18 months to live. If you look at your calendar you'll see that today is 18 months. My life is in God's hands! What better place could it be? mm

Feedback

I love the feedback from my blog. I usually get 5-15 comments here for public eyes to view, but I receive many more in my personal e-mail. It’s always great to hear how God is using my experience to encourage you. Amazingly, this blog is now being read in 65 countries of the world with an average of 70 hits a day. It has been really fun to watch it grow!

On my last blog about heaven (Turn On the Light) there were a couple of responses that I wanted to share with you.

The first was a discussion about why we’re so reluctant to talk about heaven. The conclusion was that the subject of heaven is usually linked to the subject of death—and that’s probably why we avoid it. Makes sense. The thing we dread the most (death) is linked to the thing that will be our best experience ever (heaven) so it creates a dilemma. Do we want to think about that good thing or not? Most of us have opted not. (smile)

The other feedback (from my friend Arnelle) was a really cute story which illustrates this worst/best scenario. It will make you smile!

***

The couple were 85 years old and had been married for sixty years. Though they were far from rich, they managed to get by because they watched their pennies. Though not young, they were both in very good health, largely due to the wife’s insistence on healthy foods and exercise for the last decade.

One day they were on a rare vacation and their plane crashed, sending them off to Heaven. They reached the pearly gates and St. Peter escorted them inside. He took them to a beautiful mansion furnished in gold and fine silks, with a fully stocked kitchen and a waterfall in the master bath. A maid could be seen hanging their favorite clothes in the closet. They gasped in astonishment when she said, “Welcome to Heaven. This will be your home now.”

Later the old man asked St. Peter how much all this was going to cost. ”Why nothing,” Peter replied, “remember this is your reward in Heaven.” The old man looked out the window and right there he saw a championship golf course, finer and more beautiful than any he had ever seen on Earth.

“What are the greens fees?” grumbled the old man. “This is heaven,” St. Peter replied. “You can play for free--every day.” Next they went to the clubhouse and saw the lavish buffet lunch, with every imaginable cuisine laid out before them, from seafood to steaks to exotic deserts, with unlimited beverages. “Don’t even ask,” said St. Peter to the man. “This is Heaven. It is all free for you to enjoy.” The old man looked around and glanced nervously at his wife. “Well, where are the low fat and low cholesterol foods and the decaffeinated tea?” he asked.

“That’s the best part,” St. Peter replied. ”You can eat and drink as much as you like of whatever you like and you will never get fat or sick. This is Heaven!” The old man pushed, “No gym to work out at?” “Not unless you want to,” was the answer. “No testing my sugar or blood pressure.” “Never again. All you do here is enjoy yourself.”

The old man glared at his wife and said, ”You and your doggone bran muffins! We could have been here ten years ago!”

Turn On The Light

Are you ready? Because it’s confession time!

I’m really excited about heaven!

I’ve been keeping this quiet because some of my close friends have indicated that they are uncomfortable with my talking about heaven. It seems that they think it will make me give up on life…and stop praying for healing. But that couldn’t be further from the truth. Talking about heaven makes me want to live life even more fully. I believe that looking at my life in light of heaven has helped me know what’s important here on earth.

During the first few months after my ALS diagnosis I had 4-5 people tell me, “Oh, you need to read Randy Alcorn’s book Heaven.” I had finally decided that I needed to go buy it when our friends Ralph and Harriet sent me their copy. They had just finished reading it and had been blessed so much that they wanted to pass it on to us. The same week J.R. and Sue gave us Randy Alcorn’s devotional readings about Heaven, a spin-off of the main book. Then I was faced with a dilemma—which to read first. Finally, I decided to start with the long one, the theological treatise. Reading it took months, but I read a little bit each evening and it filled my dreams with sweet imaginations about Heaven, the New Heaven, and the New Earth.

The part that surprised me most was the part about the New Earth. I had never really thought much about that before. Evidently after Christ comes back, and the judgment takes place, and Satan is banished to Hell, and it’s "the end of the age," then it’s time to enjoy the New Earth. Alcorn says it's inherent that we love earth and don’t want to leave it. God created us to love earth and he’s going to fulfill that longing by giving us a new redeemed earth. The New Earth will be the way God had intended it to be in the first place…with no death…no disappointment…no broken relationships…no treachery…no disease…no deception…no jealousy...and no pain! It’s hard for us to imagine an earth like that, because our world is laced with brokenness. Alcorn believes that on the New Earth we’ll have jobs, and we’ll travel…he even believes that the cultures will still be intact. I hope he’s right because there are lots of places I wanted to visit and didn’t get to…Asia...Africa…South America…Australia...and others.

And what do we know about heaven? It’s certainly not the boring place some people imagine it to be. Think of your happiest moment here on earth…now magnify it! That’s a piece of the “rush” we’ll have there. Some things that we do know about heaven are…

We will be with God. (Rev. 21:3) I don’t think we can even imagine how great it’s going to be in his arms.

There will be no more sadness! (Rev. 21:4) Think how many times a day we’re sad about something…or disappointed. There will be no more tears. It’s hard to fathom, isn't it?

It’s beyond our imagination. (I Cor. 2:9) The Bible says our senses can’t even imagine how good it’s going to be. Wow!

It’s our real home! (Phil.3:20) We’re just travelers here, but we are “citizens” of heaven. Can you imagine how comfortable it will be to finally be home…for the first time. Like walking into your own home after a long vacation.

We won’t have these broken bodies anymore! (Phil. 3:21) No more sickness, no dread of the next lab report, or MRI, or treatment…

Wow! That means that my body will be able to walk without assistance (even run, skip, and maybe even do some cheerleading jumps again--smile). I’ll be able to speak again (oh, I can speak now, but nobody can understand me—smile). I’ll be able to sing (maybe even better than I could on earth—smile). And I’ll be able to eat pizza again (I’m pretty sure that will be my first meal in heaven--smile).

Okay, I’m a patient person, and I’m ready to take things in God’s good timing, so if I’m healed and need to wait 30 years to go to heaven...that’s perfectly fine with me. I will be delighted!

But if it's God's plan that I go to heaven sooner…why not? Whenever it’s my time, I’m ready…and curious…and excited!

You know? Many of us walk through this life on earth as if this is all there is. So we work overtime to have nicer houses, or more clothes, or more stylish furniture—forgetting that all of that stuff will be left here. None of it goes with us.

But when we turn on the light of eternity, we can see what part of earth is illuminated….only those things that will last forever. No stuff! Just relationships! Our relationship with God, first of all, then the relationships with others as we have influenced them to love God and choose to spend eternity with him.

But here’s my question: Why do we have to be near death to talk and think about heaven? Shouldn’t we be talking about it every day? Wouldn’t it help keep things here on earth in perspective? Wouldn’t it help us make wiser choices about how we’re spending our energies? I think so.

I think our worlds would flip upside down if we just stopped and honestly asked ourselves this question: “How much of my time do I spend each day on eternal things?”

If you’re reading this and you’re not sure if you’re on your way to heaven, what better time than now to make that decision? That’s the most important choice of your life…to receive Christ as your personal Savior and allow him to totally reshape your priorities.

I’ve decided! I’m not going to hide my excitement any longer. Heaven is the best thing any of us have going! I think we need to let the anticipation for it grow…and grab our hearts!

I finished the book Heaven several months ago, then read some other things in the mean time, but this week Jim and I launched into the devotional book: Fifty Days of Heaven: Reflections That Bring Eternity to Light. And all of those feelings I had earlier are coming back! I can barely contain the excitement!

I want to invite you—no urge you—to buy the book and read it with us. Just click on this link to order it at Amazon: http://www.amazon.com/50-Days-Heaven-Reflections-Eternity/dp/1414309767/ref=sr_1_5?ie=UTF8&s=books&qid=1228746694&sr=1-5

Why not make it a Christmas gift to yourself? You might also want to order it as a gift for some of your friends. It might be the best gift you’ve ever given or received.

It’s my prayer that these readings will help us all Turn On The Light.

mm

P.S. I think God gives little glimpses of heaven while still on earth. For grandmas these are often the times when family is all together. I had one of those moments Thanksgiving weekend as all of our kids and grandkids were under one roof. We had an early Christmas celebration and it was sweet. Don’t you love this photo where each kid is holding his/her initial? The kids' ages are: Reuben (5), Levi (4), Elliana (3), Micah (18 months), Jolene (13 months). (Yes, Micah was having a hard moment…smile.)

I feel blessed to have kids who understand the importance of living their lives in light of eternity. And...I was really amazed at how we could discuss my end-of-life issues so openly and gently. Important decisions were made in the loving context of family. I think this is how God meant it to be…and we all got a little glimpse of heaven.