Maralyn's Updates

Saturday, December 27, 2008

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)

28 Comments:

Blogger jeanne @ Inspiring Ideas said...

We love you, Maralyn!

5:36 PM  
Blogger Nino said...

you are great woman of God and great example to many, you were great example for me there in Finland, love you Marlyn...nino

5:52 PM  
Blogger Dr. James O. Lowell said...

Maralyn,
I just read your blog. You are amazing my friend and I love you dearly. The tears stream down my face as I think "how could it be possible that you may be gone from us soon". Wow! You will have a lot of crowns in heaven and I have been honored to have you as my special friend and "sister". My prayers are with you and Jim. May God give you both strength and His peace for the days ahead. I know it is not easy. Much love!

7:10 PM  
Blogger Annemari Kurkela said...

Hey, thank so much you for these blogs! These have been an great encouragement for us! Wau...you are truely living exciting times.. My brother went through so much what you are going through, physically and spiritually. ..and it was so beautiful to watch! God can be so there in these kinds of moments. Even the moment of dying can be so wonderful..full of peace and holiness. At least my brother's was. :) Maralyn (and Jim) thank you for all you have done for us! ..the seeds which you have sown will continue bearing much fruit! Blessings from Seinäjoki!

7:32 PM  
Blogger Brandi said...

Maralyn,
I am sitting here with tears streaming down my face. For one, I am going to truly miss your sunny outlook on life. You are such an amazing person. For two, as you know, my brother in law was diagnosed with ALS this year. I can see that it is progressing and to hear what you are going through prepares me for what is coming. 18months! How short! Do you know that by writing in your blog you are leaving a record for me to refer to when we need a little insight into the disease or simply need a dose of faith to make it through? Thank you for that! I have one question for you: How in the world am I going to be strong for my sister when all I want to do is cry?? They have three kids and my sister is going to be lost without him! Just as your family is going to be lost without you! I look at your family and there is so much joy in their eyes. I hope we can face it with that much courage and happiness. Thank you for being such a blessing to us! Lots of love, Brandi

9:50 PM  
Blogger tracy said...

Maralyn,
God bless you. I don't know if you are trying to be inspiring, or if it is just your natural way. But thank you so much for being so courageous. Just to have ever had a meal with you during a missions convention and share conversations with you at various agwm functions left blessing on our lives. But following your blog has been like reading a testament of God. Thank you for all that you have shared. Robby and I pray regularly for you and Jim. I hope you have the best new year. all my love, tracy

10:46 PM  
Blogger Brad said...

Maralyn,
It touches my heart to read the letter to your kids. I gave my own mother back to the Lord 8 months ago. She lived with us for two years. We pulled out all the stops, doing all we could think of to make memories with my girls, spending some family inheritance in the process, and have no regrets. It was a precious time. I was also at your mother's funeral and remember. As an aside, my 95-year-old grandfather told me this year that all his friends died many years ago, and he supposes that they think he missed Heaven's bus by not making it by now. What a sense of humor. I can't write without tears. You are loved.

12:29 AM  
Blogger me said...

marilyn, I have never met you, but i have met numerous Finns who have been deeply affected by your call to Finland. You have been and are a blessing! Praise God for you and Jim!

Phil and Katja Zarns

2:04 AM  
Blogger John Koeshall said...

Dear Maralyn and Family,

Our prayers will be with you in these closing weeks. It is hard to believe that the last time we were together was up in Finland doing a weekend workshop for student ministry. I still have the pictures of our time there. I'm not sure if my parents have told you, but we received an email from a lady that was at that second workshop who is starting to do student ministry. That is, I'm sure, just the beginning of a wonderful movement of student outreach in Finland!

I just want to thank you, Maralyn, for the friendship you have shown our family. I'm sure we are just one of many to receive your big smile and hospitality!

We love you all very much. Though I'm deeply moved by what you right, even to sorrow, I can sense (as your joke confirms) your great anticipation and joy to see Jesus. Keep the trust, Maralyn and Family, and may that peace that passes all understanding be with you.

Johnny K.

2 Tim 4:7,8, 18

3:03 AM  
Blogger Duane Bennett said...

Hi Maralyn and Jim,
Sandy recently shared with me that you had ALS and of this blog that you write. It has been such an encouragement to me! Since the scriptures have so much to say about suffering, your response to this struggle has been an example to me of how a believer should respond. I appreciate so much your openness to your personal experience. It reminds me of the time before I was married and I had asked to meet with you and Jim to gain some council to help prepare for married life. I still remember you words you spoke to us that day (9 years ago). The 2 of you have always been an encouragement to me even though we have not seen each other much through the years. You have been in our prayers often and again as I read your blog today. It reminds me of what you wrote about heaven and how the reality of our future Hope should change the way we live each day. Peace through Jesus, Duane

12:26 PM  
Blogger thehsmomof3 said...

Dear Maralyn,
I was greatly moved by your post….partly in deep sorrow and partly in great joy. There is such a paradox of feelings that it’s hard to express. That said, I really appreciate your openness with us and the precious window into what God is doing in your life at this moment in time.
This afternoon, I read the final chapter in a book that takes a look at the life of Moses. It’s called, “Strengthening the Soul of your Leadership” by Ruth Haley Barton, and I thought I’d share a significant portion of it with you.
Maralyn, I want you to know that I honor you as “A person who knows God. A person who is faithful against all odds and does not shrink back. A person through whom God can perform whatever deeds need to be done—mighty or otherwise—but also a person who can be just as content settling down beside a well or sitting on the side of a mountain in God’s presence. Someone whose face shines because she has been talking to God. Someone whose ever move is a result of an attempt to listen to God and then do what he says. Someone who, when God says, “It’s time to let go; it’s time for you to come home,” easily lets go and rests in the arms of this One whom she has grown to love and trust with her very being."
Today I choose, along with you and Jim, to embrace whatever journey God has laid out for you. Of course, I long for you to be restored fully to us at this moment, and I would praise God with all of my heart if he chose to restore your physical health here and now. However, if His perfect plan is to restore you completely and eternally, I will look forward to our time together in heaven. I will long for those heart-to-heart chats, those fun stories full of deep laughter, and that special bond we’ve shared that will be just that much better in that perfect Place. Heaven will just be sweeter because you’re there waiting for me. Now that’s a FAMILY REUNION that will top even the wonderful ones you planned for us over the years! (smile) One way or the other, I look forward to a sweet time with you.
I love you,
Sherri

5:17 PM  
Blogger Carol said...

Maralyn,

As I read your letter, the familarity of your physical progression brought tears. My father passed away a few days before Christmas in 2003. He was diagnosed with Lou Gehrigs just six months before his death.

We struggled with his swallowing problem for three or four years before his passing. I will never again see applesauce and not think of him. It got to the point that applesauce was all he could eat, so I used the pears from my father-in-law's tree and applesauce and made him homemade pear-apple sauce. He always loved it when I brought him more and it helped me feel like I was doing something useful for him.

His legs did not falter until the last two weeks, although they weakened gradually from the last year or so.

We were blessed that his speech held strong until the last few days of his life here on earth. The last thing that he said or tried to mouth, unaudibly were I Love You. The picture of his saying that remains forever in my mind.

His battle with the disease lasted for 11 years, unheard of in most cases. That was my dad, he always said you can do whatever you put your mind to.

I think you already have his philsophy down, but I wanted to share with you what he told me one day.

He said you know I may be dying, but that doesn't or shouldn't change my outlook on how I live each day. Each of us do not know when our last moment will be on earth and we should live as if it may be our last moment. That is exactly what he did.

I will keep you and your family in my prayers and would love to keep in touch with you.

Carol
carolanncohen@sbcglobal.net

8:50 PM  
Blogger The Sandovals said...

love and peace maralyn! we are always so touched by your honesty and vulnerability. you continue to teach and bless so many. often when i have been discouraged with my own medical predicaments i find myself navigating over to this blog and find so much hope and as you wrote, "trust". thank you. please greet jim for dawn and me and our new daughter "hope".

9:29 PM  
Blogger Marianna & Janne Tiainen said...

Lot's of hugs to you from us, Maralyn! We miss you.

- Marianna & Janne Tiainen

1:51 PM  
Blogger John & Eva Ellison said...

Dear Maralyn and Jim, You have been and will continue to be in our thoughts and prayers. May you be keenly aware of God's nearness each and every day.

8:52 PM  
Blogger Taina said...

Psalm 91:2
"I will say of the LORD, He is my refuge
and my fortress: my God; in him will I trust."

Your life is a great example how to serve God and live your life in Him till the end. Blessings from all of us to you and Jim.

:Taina & Kai

3:11 AM  
Blogger Rose said...

Lots of strength and peace to all of you. XX

8:04 AM  
Blogger Olga-Maria said...

Love you Maralyn & Jim. God's peace be with you. ♥
Olga-Maria & Samuel

9:05 AM  
Blogger JCsings4Him said...

Oh Maralyn...reading your blog these past few months has been such a blessing to me and I feel as if I know you personally even though we have never met.

Your example of Godliness, strength and patience is a beacon to anyone in any form of struggle or sacrifice! I will be praying for you and for your family and I will be sharing your need to our Union Grove congregation on Sunday morning...they have very fond memories of you and Jim.

God keep you, God hold you, God strengthen you in this leg of your journey here!

Until we meet here or in heaven...Joann Ciske

11:30 AM  
Blogger Teddybear said...

Maralyn though I have not met you in person, you have touched my heart. You are such a delightful woman with much courage from the Lord. He said "My Grace is sufficient for you, for power is perfected in weakness". Your faith is in the Lord and it shows. Thank you for inspiring me. My prayers will continue.

Love Deb

4:18 PM  
Blogger KC said...

Thank you Maralyn for your openness with us. You are incredible and your legacy is truly amazing. Your life is inspiring and I thank you for constantly pointing us back to Jesus. And, for teaching us what it means to trust. Love,
KC

11:34 PM  
Blogger Sue Thomasgard said...

I want you to know what an amazing inspiration you have been to me since I heard you speak at the Bethlehem Lutheran Church ladies meeting. My husband and I knew you and Jim through teaching in the Nekoosa schools, but I wish I had gotten a chance to know you better. The sincerity and warmth of your hug that night at the church made me feel a bond of instant friendship. I have been praying for you and will continue to do so. You are a very special person, and God must have a special plan for you. I am sure you have truly carried out his plan. Thank you for touching my life. God bless you.
Sue Thomasgard

12:47 PM  
Blogger Eerika said...

I've had you guys on my mind and heart alot today. I'm waiting eagerly to hear about the doctors appointment on the 8th! You're incredible...inspiring, loving, beautifully tender hearted, honest (my sister and I have learned so much from your honesty), and my hero. You remind me of that verse where they talked about the people of God...the Bible says, "the world was not worthy of them." I love you Jim and Maralyn - Eerika

7:04 PM  
Blogger Maria said...

Dear Maralyn & Jim,

you've been an encouragement and inspiration to me all these years I've known you. You've really affected my life in a way that is hard to describe with words. Thank you for that! It's hard to find words in a moment like this, but as you wrote our lives are in God's hands and that's the best place to be!

You are in our prayers!

Hugs & blessing!

<3 Maria (and Levi)

8:10 AM  
Blogger Esa Hyvönen said...

Dear Maralyn,

I've never seen such a brave couple as you and Jim make together. Although I am saddened by the things as they have come out this way, your courage to tell your story and live it fully to the Lord is the story that makes me to realize how real is the peace and hope the Lord imparts us. You both have been a great example to us. Thanks for sharing your life here and on missions-fields. We have great memories of you from our CTS times.

Lots of love from Finland,

Esa and Soili

2:45 AM  
Blogger Ben said...

Dear Maralyn,

It is indeed so hard, I thought Nupur and I had words galore and yet, we find ourselves so stumped. Words come, but they just clog up in the throat, and refuse to come out.

For us, you've not just been our pastor's wife, but you've been a friend, and mother - especially so to Nupur. We will remember you, very fondly and I am sure Eric would love you when he hears of you from us - you have had and will always have a very big part in his life - you are grandma!

We still hope for a miracle and we believe that the Lord knows his will for all of us. We submit to the will of the Lord!

But one thing we know - we shall meet again! Till then, we pray with all those praying for you, that our "I AM" give you, Pas. Jim and all your loved ones the strength and comfort that you need.

Till then, in Christ we remain.

With Prayers, Love, Hugs, & Kisses,
Benni, Nupur, and Eric

1:16 PM  
Blogger Hannele said...

Dear Maralyn,
For a long time I have had on my mind that I would like to thank you and Jim. I was one of your students in Finland in 2003 and during that time God blessed me in a special way THROUGH YOU! You have been good teachers, examples and "parents" for me and for many others, I´m sure of that.
THANK YOU!
GOD BLESS YOU!
Hannele

6:19 AM  
Blogger Tiina said...

Miss you so much !
Tiina

8:45 AM  

Post a Comment

Subscribe to Post Comments [Atom]

<< Home