January 20, 1917: Day +62

It is interesting to live life where it is so blessed and painful.  The pain is the reality of Doug's body not functioning. He cannot move at all on his own. He is dependent on others for all of his needs. And at the same time, he is improving. I remind him time and again of his improvement.  Remember you have gone from moving nothing and barely able to express a word that could be understood and now you can do all these things; and I list the things. But in truth, he still can't move.

This is the darkness, not moving. But every time the darkness feels like it might over take us, I remind both of us of the light.  I remind both of us of the star. I know the star is real.  The light is not just my imagination and I know that the light gets brighter each day. Have you ever gone camping and you are sitting around the campfire.  The fire is so bright and warm.  But the night is getting late and you need to get ready for bed. Perhaps you need to go to the bathroom and so you turn from the light and face the forest that is behind you.  The forest is so dark.  You forgot it would be so dark, because for hours you have been focused on the light of the campfire. As you struggle into the darkness you are anxious to get back to the light. So it is with this journey.  Sometime, when helping Doug with range of motion exercises, we both can see how weak he is and how his muscles are not responding, but at the same time, I am telling him look what you can do. You can see light or dark. Do you choose the light (star) or the darkness (forest)?

Well, so far, the light always wins. And today, there was more light. Doug had a swallow evaluation today. He was nervous about this because it meant putting a camera down his nose to watch him swallow different types of textures. The reality of the procedure was easier than the fear of doing it. The camera is very small and the Speech and Language Pathologist used Lidocaine to ease the pain. The good news is that after the study, Doug was approved to have a trial lunch tomorrow of pureed foods.  We are very excited.  This is a step toward getting the feeding tube removed.

Then tonight when I was doing range of motion exercises. I found that Doug was able to pull his arm into his stomach with just the littlest support from me. And today when the aides were turning him to change his sheets he suddenly was holding the side of the bed. He grabbed it himself when they turned him. I still can't believe he did that and I don't know how it happened

Finally I want to thank Penny Stubs for keeping Doug company this morning.  Her companionship allowed me the time to take our dog Stryder to the vet. Doug really wants to see Stryder, but first he needed to get his shots updated.  They were due right before Christmas. As soon as Doug is no longer in neutropenia, I will be able to take Stryder for a visit.

And so yes, the light is growing.

God of Light and Hope,  guide us on this path of healing. Help us to forget the darkness that surrounds us.  Help us to concentrate on the star. The star that directs, lights and comforts us. Shine brightly on Doug, so that he can see the healing that is his and the healing that is awakening in him each day.  In your name we ask it. Amen.

January 19, 2017: Day +61

Doug sitting in a wheel chair, with the quilt
that our daughter-in-law Corinne made.

Tonight driving home, I was pondering, when my daughter and I walked the Camino de Santiago in Northern Spain.  As we walked the 500 mile pilgrimage, no day was the same other than walking.  Each day we saw whole new landscapes, stayed in very different places, met different people. We encountered whole new challenges each day with the path, the mountains and the aches and pains.  To some degree I feel the same about this journey.  No day is ever the same.  I never really know what to expect. The part that is the same is that I get up and go to the hospital, just like we got up and started walking. Each day there are amazing vistas and rugged challenging climbs.

Doug is now feeling frustrated that he cannot move on his ow.,  To me, it seems the very fact that he is frustrated is an improvement.  Tonight at 8:30  he said he worried about me and that he thought I should go home so that I do not get home too late.  He has not been able to think about me going home or driving on slick roads these past weeks. Often he was not aware I was there or he so needed me to be there that he did not want me to leave.. I believe his awareness  is a sign of his continued healing.

Many other good things have happened over the last few days.  He was able to eat a half a banana and a cup of pudding. This is so important.  He really needs to get the tube out of his nose.  It is very irritating to his nose and throat.  If he is not able to eat soon we will have to consider a tube directly into his stomach.  I am hopeful we won't have to do that. The OT and the PT, for the past 2 days have helped Doug to sit on the side of the bed. They have worked with him to build the strength to hold his head up and strengthen his core muscles, as well as putting his feet on the floor, strengthening his leg muscles. Today he did better than yesterday.  It is delightful to see progress, even though the steps are small. Today while stretching his legs in bed, he was able to help push his right leg out from a bent position. He was also able to push both arms out from a bent position.  Moment by moment, day by day he is healing.

The OT and PT working with Doug, sitting at
the side of the bed.

I have been limping around now for about 7 weeks. And so I decided that it is time for me to have surgery on my knee. I will have the meniscus repaired on Tuesday.  This is outpatient surgery and I should be walking in the afternoon. I understand the recovery is fairly quick.  I know that when Doug gets home he will need care, and so I decided I had better get this knee taken care of very soon.

With so much happening it s time to pray,

Holy One, Light Bearer, thank you for lighting our path on this journey. Thank you for giving us hope  with the daily bright spots in the many signs of healing. Thank you for sending light bearers for the path that encourage us  when we struggle or become frustrated. Thank you for the expertise of the professionals working with Doug and their positive attitudes.  They build our trust in the process and bring us joy with their playful banter. Thank you Holy One. Thank you Light Bearer, Thank you for your constant illuminating presence with us. Amen

January 18, 2017: Day +60

 

As more light is opening and awakening our days both figuratively and literally, I can more clearly see that which needs to be attended to.  For weeks my only focus was standing by and supporting Doug, and guarding his life. Now with the crisis at bay, like Doug looking around and seeing the nurses faces, I am looking around to see what next needs to be done.  There is now a little space to live outside of the narrow stream of light that is Doug's life.

My dear friends Ingrid Sitton and Sherry Barrett stepped forward and asked me if they could help to organize some friends to offer Doug companionship and care while I return to work.  They met and thought through all the considerations on what a person sitting with Doug would need to know.  These two wonderful women have been ministering to us since we first decided to get HSCT for Doug.  They were the main organizers of our fundraisers.  They have literally been the wind beneath our wings as we began this pilgrimage and now as we continue on the path.

Ingrid has agreed to be responsible for organizing people to be with Doug, so that I won't have to worry about the schedule and so that I can attend to work, Doug and my family. I have decided to go back to work on February 1, 2017.  I will only be working 19 hours a week. And so for now, I am thinking my schedule will be 8 to 4 on Mondays and Tuesdays and 8:30 to 11:30 on Wednesdays. Doug really does not need anyone with him before 9 or 9:30.  And so I  think that there will be two,  3 hour shifts on Monday and Tuesday and one shift on Wednesday morning.  That would mean that we need a total of 5 volunteers a week. We don't know how long Doug will be in the hospital or rehabilitation facility.  It all will depend on his recovery. 

You might ask, why does Doug need someone to be with him.  He said, "I would like some companionship."  I think this is important for him, to keep him company but also to support him in this journey of healing.  My hope is that someone would be there to scratch an itch, adjust his pillows or legs, call the nurse, and cheer him on.  The staff at Vibra are wonderful.  They do a very good job of caring for him, but they can't be there all the time.  When Doug gets movement back he won't need anyone with him all the time.  Regular visits from friends will be enjoyable for him.  So many of you have asked about what you could do.  This is something that would be so wonderful for both of us.

You don't need to know anything special to volunteer.  You are only there as a friend.  For his health, we have to be vigilant to keep germs away. It is important that all visitors are well and have not been around a person who is sick or feel like you might be getting sick. If you have been sick, it is best to wait a week before visiting. Sickness, could be catastrophic for Doug's health.  Right now he is healthy; just finishing the antibiotics from his pneumonia. We have to protect him from getting sick again. When going to visit you should leave your coat and purses in the bathroom, in his room (I put my things on the shower seat), as these clothes may carry germs. You need to wear clean clothes. Before entering the room you need to carefully sanitize your hands.  Hand shakes are fine if you have sanitized, but it is probably best not to hug. As a companion you are there as a friend. Doug is an extrovert and loves visiting with his friends. You don't have to provide care outside of helping him with an itch or a pillow re-position.  When the staff provide personal care please step outside the room. If he is tired he may need to nap. He tires very easily.  Please know that Doug is talking and very able to communicate his needs. You don't have to anticipate his needs. I will leave a log book for you to sign.  If you have considerations or concerns you may put them in the book and I will attend to them while I am there.  I will be there after work each day. 

If you feel like you can help out, instead of contacting me, would you please call Ingrid? She will let me know who is visiting and when.

Her home number is: 898-4776

Her cell number is: 867-8351

Providing love and companionship for Doug is the greatest gift you can offer us right now. I will be so thankful for your help.  With the skills of the Vibra staff and the love of his friends and family, I know he will do well. Together, we will weave the light of healing around him and cocoon him in our love. For now I think we should only schedule the month of February.  It is very hard to know when he will be well enough to leave there. One step at a time...  Bless you my friends!

And so we pray:

God of life and light, your warmth and brightness stretches and fills the night sky.  We are drawn to gaze upon you and to wonder.  Who are you; what do you call us to? Guide us as we seek you. Heal the parts of us that need healing. Fill us with hope and joy, knowing that your presence is always with us seen or unseen. And as Doug sleeps this night light his dreams with your presence. Comfort and protect him, help him to know he is never alone. In your name we ask it. Amen

January 17, 2017: Day +59

 

When reflecting on the Epiphany I think about the light coming into the world.  I think about sunrises, when night becomes morning.  I think about awakening. I think about transformation and change.  Tonight, writing the blog, I wanted an image of the Epiphany to reflect upon and what I found were single stars. You might say, "Well of course one star.  The wise men were following a single star." And I would say, yes, of course, a star...

I looked into the night sky, this night, and there were no bright stars and so I imagined, what would it be like to follow a star, a bright star.  A star is surrounded by darkness, you can only see stars at night, it is so easy to become lost.  Do you follow it night after night?  Do you still follow, when your friends, your families, your co-workers think you are foolish? Do you follow when you only have your inner compass, your own faith to mark this journey? Do you believe your companions who are with you, these fools who believe in this star and walk with you? Whom do you trust? Whom do you believe?

In this long journey with Doug, with Doug having MS and with all the recent frightening events that have left Doug without being able to move, we have had to keep our eye on the light. To lose the light is to loose life. That light, that sometimes burns brightly and sometimes very dimly holds our hope and our belief that darkness will soon turn to light.  A new day will be born.

I want to thank our friends and family who have walked with us, keeping the faith, nudging us on and reminding us of who and whose we are. We are so grateful for the help offered.  At Vibra, I am so thankful for the attitude of the staff and for their cheerfulness. Doug is so uncomfortable in bed, he cannot readjust himself as we all do, he has to ask others to do it for him. It is frustrating for him. I weary too, of pushing his glasses up, scratching his nose, his ankles, his legs for the umpteenth time. But tonight, I was so grateful, for the cheerful faces at the door, offering help, and offering support, holding the light, by believing in the vision of healing and a return to wholeness.

Today was a more difficult day for Doug. He was so tired and weary of this condition. He did not feel well. He did so much yesterday and he was tired today. And then our friends the Rev. Jennifer and John came by to visit. His mood brightened. He enjoyed the companionship and friendship and I most certainly did as well.

I needed to go over the to the school district to talk about when I would be returning to work and my contract.  During that time my sister came to stay with Doug.  Upon returning I was telling her about my concern with paying off the loan for Doug's treatment, the medical costs we will have and not working.  She so graciously offered to pay off the loan for his transplant and help in any way she can.  She shared her light with me this night and both of our lights grew brighter. Doug's favorite saying is that the best prayers have feet. She came running to answer my prayers this night.

So much has happened these past months, that all that we can do is follow that light, keeping faith, knowing that the one who created this world, is waiting, lighting the way and will lead us to transformation. We must trust in the slow work of God.

And so we pray:

God of light that transforms and transcends, be with us as we journey to healing.  Help us to trust the journey. When things dip, fall apart, tire us, graciously pick us up, restore us, and gather us together with others who are following the light so that our hope and our faith are sustained. God of light, watch over Doug this night, be his night-light, so that he might rest deeply in you.  And graciously be with me, sustain me as Doug and I walk this journey together.  In your name we ask it.  Amen

January 16, 2017: Day +58

Such a good day...

Funny what makes a good day.  For us, the littlest things makes for a good day.  I have learned not to look to far ahead, resting in the present moment gives us the comfort we need.

Today when I came into Doug's room he greeted me.  The aides were just leaving. Once they were out the door Doug said, "Today is the first time I noticed their faces and the first time I really looked at them." Up till now Doug's focus has been mostly internal.  He was unable to look outside of himself. He has been coping with so much just to live. For him to be able to look, see and interact with others for a period of time is another big step.

Then Doug said "Look, I can move my arm."  Sure enough, he moved his arm just a tiny bit.  This is the first time he has reported to me what he could do. Always before I have shown him his improvements.  He has seemed a little disengaged in the improvements.

Then our friend Steve Matthews, and his legal assistant Angie came to see us.  Steve most graciously drew up a Power of Attorney for us.  He needed Doug's signature. I thought hmmm, I am not sure that can happen.  Doug said he could do it. I was skeptical. Well, he did.  Not his normal signature, but he was able to form a pincer grasp, hold the pen and wrote a new rendition of his name.  He definitly could not have done that a couple days ago.  Then the final big event today was with his Speech and Language Pathologist.  He was evaluating Doug's swallow and decided to try the pudding again.  Doug did really well.  He ate the full cup with no problems.  Hooray! He really wanted steak and eggs, but pudding is a step in the right direction and so it looks like he is well on his way.

It was a busy day with so many improvements in one day. We pray each day continues in a similar way.

And today, I took a few more moments for myself.  My friend Melanie came and met me for dinner.  It was lovely to step a way for a short time. And tonight at 9:00, I went for a massage before bedtime. Hopefully I will sleep more easily tonight with so many good thing in one day.

Jesus, light of world, your light draws us and leads us. Like the dawn of a new day, this day filled us with hope and promise. We thank you for  continued healing of  Doug's body and rest for our bodies and souls.  Be with us as we sleep this night. Send your angels to keep watch over Doug, provide him rest and comfort, give his caregivers compassionate hearts to nurture him  and care for him.  And fill us again in the morning with a new dawn and the promise of a new day. In your name we ask it.  Amen.

January 15, 2017: Day +57

The Blessing of the Magi by Jan Richardson

Today Doug was even better than yesterday.  He is stabilizing his neck and shoulders. I can see the muscles move up into his arms as he tries to move his hands and the muscles in his calves as he tries to move his legs.They are awakening. He is more engaged and alert. He is moving with the light from the Epiphany.  For all this I say Amen!

My friend Kate Malone sent me this poem last week, written by Jan Richardson about Epiphany.  I have read it over and over. I have likened it to Doug's and my story.  Like the Magi we set off on a clear path, determined and resolute.  Our stay in Mexico and going through the HSCT treatment was a true gift, filled with the expectation of new life and hope. The road back has been much darker, with only enough light to take the next step.  Poet Jan Richardson says:

You will set out in fear

you will set out in dream

but you will set out

by that other road that lies in shadow and in dark

And indeed we have set out in fear, still holding onto the dream, but the road does indeed lay in shadow and dark.  It takes continuous prayer to constantly watch and feel assured by Doug's little bits of improvement. The doctors constantly have told me the road back will take months and it will be filled with peril.  I can only hope they are wrong.  They did not think that Doug would make it and he has, they did not know his spirit, or mine, or those walking with us. For indeed, the light that we thought we had left behind in Mexico, does indeed go with us, spilling out ahead of us to help us to take the next step on this path.

a POEM  from Jan Richardson

Blessing of the Magi

There is no reversing this road.

The path that bore you here

goes in one direction only,

every step drawing you down a way

by which you will not return.

You thought arrival was everything,

that your entire journey

ended with kneeling in the place

you had spent all to find.

When you laid down your gift,

release came with such ease,

your treasure tumbling from your hands

in awe and benediction.

Now the knowledge of your leaving

comes like a stone laid over your heart,

the familiar path closed

and not even the solace of a star to guide your way.

You will set out in fear

you will set out in dream

but you will set out

by that other road that lies in shadow and in dark

We cannot show you

the route that will take you home;

that way is yours

and will be found in the walking.

But we tell you

you will wonder

at how the light you thought

you had left behind goes with you,

spilling from your empty hands,

shimmering beneath your homeward feet,

illuminating the road with every step you take.

January 14, 2017: Day +56

It is Saturday, the middle of January and Doug's 4th day at Vibra.  I am so happy to report that nothing dramatic happened today. The staff were great and helpful.  Doug got to get into a wheelchair again.  His vitals are normal and he is responding to treatment.  The day was more restful.

It was only a week ago that Doug got pneumonia. It was a week ago that we were uncertain if he would make it through the night.  And then there were all the days prior to that, that each day we were on the fence if he could live through this.  Today, it was so nice to have a day that was just another day of staying the course.  I am so thankful.

 I came home late tonight around 11:00 because Doug was not very tired and he wanted to watch the news.  He was awake most of the day. This is substantially different; he has not been able to stay awake for too long most days.  And again, he was interested in watching some things on T.V.

Our friends Ludee and Ted dropped by.  We were both really happy to see them.  My sister Kate came over and spent the afternoon with Doug, so that I could have lunch with Ludee and Ted and go home to take a nap and catch up on a little rest. I felt comfortable leaving Doug, he was doing fine.

Always in the back of my mind is the progress Doug is making.  But reflecting on the day, I am thankful that Doug is talking, seeming more like his old self and responding to medications. Yet he has such a long way to go, We both continue to pray that he will get more movement back, so that he can return to his pre-hospitalization level. It makes my heart sad to see all the weight and muscle mass he has lost and to see him so helpless.  I have to keep myself focused on healing and progress. Some moments are easier than others.

And so we pray with Thanksgiving.

Holy, life giving God, help us to live deeply, resting and trusting in your goodness.  Help us to remember that your work in the world can sometimes seem like slow work to us.  Give us patience and the grace to have faith that you are at work even when we can't see your work.  We continue to pray for Doug's healing and the restoration of his body. We pray that he will be healthy, giving his body the time it needs to to heal.  We give you thanks for the help and witness of others who stand with us and remind us that you are close and doing better things for us than we can ask for or imagine.  In your name we ask it.  Amen

The poem below was shared with me by my friend Ludee.  It is beautiful and a good reminder of the slow work of God.

Above all, trust in the slow work of God. We are quite naturally impatient in everything to reach the end without delay. We should like to skip the intermediate stages. We are impatient of being on the way to something unknown, something new. And yet it is the law of all progress that it is made by passing through some stages of instability— and that it may take a very long time. And so I think it is with you; your ideas mature gradually—let them grow, let them shape themselves, without undue haste. Don’t try to force them on, as though you could be today what time (that is to say, grace and circumstances acting on your own good will) will make of you tomorrow. Only God could say what this new spirit gradually forming within you will be. Give Our Lord the benefit of believing that his hand is leading you, and accept the anxiety of feeling yourself in suspense and incomplete.  —Pierre Teilhard de Chardin, S.J., was a French philosopher and Jesuit priest who trained as a paleontologist and geologist and took part in the discovery of Peking Man. The prayer is excerpted from Hearts on Fire. e.