April 30, 2017: Day +160

Today we had a very pleasant surprise when we got to church.  Our friends Ann and Hadie from Pocatello were in town for the weekend and came to church at St. Stephen's hoping we would be in church this weekend.  I have known these two for more than 25 years.  Ann has been a good friend of my friend Scotti for even more years.  Both Ann and Hadie attend church at Trinity in Pocatello where Angie and I attended while she was growing up, where I was ordained and where  Doug and I were married. We have many happy memories from our years at Trinity. Hadie and Ann have been following the blog and keeping track of Doug's progress.  It was such a pleasure to catch up with them in person today.

After church, my sister Kate took Doug and I to lunch at Moons.  We often would go to Moons after church before leaving for Mexico.  It was really fun to go today. Once again we were able reclaim a bit of our life that we had left behind.

Doug is still having lots of difficulty transferring.  His muscles are still very weak.  I had hoped we would be a little further along by now.  I worry Doug is not getting up on his legs often  enough.  I decided that today we needed to try moving him using a disk that he stands on while I turn him from one chair to the other.  For the most part I am doing most of the work getting him to a stand.  Tonight his legs were really weak and he was having difficulty straightening his legs.  I have been concerned with trying this on my own, for fear I might hurt my own back.  But I was able to do it without really straining my back tonight.  It definitely was not pretty and I am not sure Doug had much faith in me.  He was pretty nervous.  But we did it.  My goal now, will be to use the disk and not the Hoyer.  We will just to see if Doug is strong enough each night.  I think ultimately it will be better for him to use his legs more.

And so we pray:

Gracious God, we give you thanks for the blessing of old friends, for people who have know us for a long time and for the opportunity to share this journey with others.  We thank you also for the return of old routines that sustain and comfort us and help us to look forward to a return to wellness.
We pray for the strength and courage to push on, to do hard things, trusting in your goodness each step of the way.  Amen

April 29, 2017: Day +159

Well, I did not get that new shower head installed. Too many other things took precedence.  The fish aquarium really needed to be cleaned and the water changed.  The poor fish has only gotten minimal attention over the past many months.  And that job took a lot longer than I could have ever anticipated.  I had to take a trip into town to buy a new filter and while I was there decided to stock up on some more food for Mr. Fish.  Since he is our only pet right now, I decided I could justify spoiling him a little bit.

Then Vicki and her husband Mark brought us 20 raspberry stalks from their garden to plant.  Vicki with the support of Mark is an amazing gardener.  She has her own greenhouse and loves growing things.  She donates much of what she starts in the winter time from her greenhouse.  One of our schools in Kuna has a community garden and they have really benefited from Vicki's generous donation of vegetable starts.  And now we are benefiting.  We have really missed having raspberries since we moved.  We are thrilled to have these starts and look forward to them growing.  Who knows we may have a few this summer.

The evening ended quietly with Doug brushing his teeth before bedtime and putting his own lotion on his feet.  I am so glad is making some progress.  I was hoping to get a little more exercise in today but he was a little tired today.

Tonight I want to pray a prayer from Compline in the Episcopal Book of Common Prayer.

O God, your unfailing providence sustains the world we live
in and the life we live: Watch over those, both night and day,
who work while others sleep, and grant that we may never
forget that our common life depends upon each other's toil;
through Jesus Christ our Lord. Amen.

Silence may be kept, and free intercessions and thanksgivings may be
offered.

The service concludes with the Song of Simeon with this Antiphon, which
is sung or said by all

Guide us waking, O Lord, and guard us sleeping; that awake
we may watch with Christ, and asleep we may rest in peace.

In Easter Season, add    Alleluia, alleluia, alleluia.

Aprili 28, 2017: Day +158

Doug got his first chance today to walk using the parallel bars having both the support of his PT and Will. Will was behind him with the wheelchair and Kerry in front of him.  He walked 8 feet 2 times. He was very pleased that he was up and getting to walk and felt very safe having this level of support. He said that today his legs did not shake and that they were pretty stable.  He also felt good that he was able to pull himself to a stand using the bars.  And so we are so grateful that this is another step in his progress.

Tonight he was able to put lotion on his feet and is able to sit up in bed when the head of the bed is only paritally raised. This is real improvement from when he came home. 3 weeks ago when he laid in bed he was not moving his legs around at all in bed.  He could not use his legs to push himself up in the bed and could not roll from side to side without a lot of effort.  While it is still not easy for him he can now roll from left to right and right to left.

He has been having bed baths since we came home, but I believe that Doug is now about ready to get a shower with a shower chair.  Maybe we will try that tomorrow.  Of course that means that I need to put the new hand held shower in tomorrow morning before that can happen.  We will see how inspired I am to do that in the morning.

Overall this was an easier week.  We have become more accustom to having new people in and out of the house all the time even with the changes in staff this week. Doug is more settled into being home and probably I am as well.  We have developed some new routines that are working.

And so we pray:

God of New Life, we give thanks for the continuous changes and chances in this life.  We thank you for spirits of hope. We thank you for strengthening our resolve to persevere when things are hard.  Be with us this night as we sleep, that we may awaken tomorrow with hope to meet the challenges of the new day.  Amen

April 27, 2017: Day +157

Tonight our friends Will, Sherry, Ingrid and Jerry brought us dinner and spent the evening with us visiting.  It was wonderful to have a delicious dinner and such wonderful company.  We talked about lots of things, but eventually the conversation drifted to how Doug was doing and about the progress he has made over the last few months.  Jerry commented that he had not seen Doug for a few weeks and could see a lot of progress over that time.   Everyone else agreed. I said I think it is a little harder for me to see the progress since I with him so much now.

We talked about the dark and scary times when Doug was so sick in December and January. Thinking back to the days that the doctors did not think he was going to make or recover the way he has is remarkable.  I have never been around someone who is paralyzed before or with someone who recovers from paralysis and so I don't have any perspective.  I just know how grateful I am for his continued progress.

We talked some about Doug's stem cell transplant and wondering if there is still hope that the progression has been stopped. We can only hope.  There is no way to know yet.  There are some things that Doug seems to have improved with.  He seems to have fewer difficulties with choking. and seems less fatigued.  While he does get very tired with the exercises he does not need to nap as often and he is less likely to fall asleep during the day.  Dr. Federenko from Russia who has been doing HSCT with patients with MS for many, many years says that he has found that most patients show the most recovery beginning at 9 months after transplant. I think it is a good reminder for all of our HSCT friends to be patient and continue to hope for recovery.  We remain hopeful that Doug will experience an end to his MS as we pray for all our friends who went through HSCT to recover from this terrible disease.

Tonight I am including some pictures from our fundraising event that we had in October.  Sherry shared them with me.  I think it is important to remember why we are on this journey.  While we have experienced a setback with Doug's illness, we have not given up hope.  We continue to pray for healing and wholeness.

God of Healing, we give thanks for your healing presence that is with us when we sit in prayer, when we sit with friends and when we see evidence of new life around us.  We give you thanks for the gift of community. We are grateful that we are surrounded by others who hold a vision of healing for Doug. We pray that our faith will be sustained and our hope for healing with not be diminished as we continue to climb the long hill of recovery. God of Healing, be will all those who struggle, who are sick and for those who are discouraged.  We pray that their eyes may be opened their faith strengthened as they witness your healing power in the world.  Amen

April 26, 2017: Day +156

Things went well today with our substitute personal care provider.  She arrived early and was very upbeat and pleasant.  It was nice to have such a happy person come in this morning. Especially since I am not a morning person.  My mornings are pretty quiet.  She came in a bundle of energy.

While she was here she helped Doug get up.  He is doing most of the work of dressing himself. She helped him transfer to the wheelchair and then made him oatmeal for breakfast.  I loved it, because when I got home she had changed the sheets, washed sheets and towels, made the bed, vacuumed the bedroom and cleaned-up the kitchen after getting Doug breakfast.  It was nice to come home and have everything done.

This afternoon we enjoyed visits from our friend Ralph and then Jennifer and John.  It was wonderful to have time with friends.  The social worker came at 4:00 this afternoon.  She was going to help us apply for 10 hours of respite care that she thought we would qualify for and receive at no charge However once she contacted the Center for Aging and Disabilities this afternoon and began the application with us, we learned that we don't qualify because I am working.  It turns out you have to be a full-time care provider, who does not work.  Work is considered respite.  It made me smile.  I can't say we were disappointed because we keep learning we don't qualify for services after making applications.  The social worker did feel bad, because she was sure she could find us some help.

Every night Doug wants me to put oil on his feet.  Lately he has asked me to put oil on his feet a second time, saying that his feet still feel dry.  I told him he was pushing it. He is lucky to have me do it one time every night.  Well tonight, he was slipping down in the bed and his feet were hanging over the end.  He was able to push himself up in bed.  Then he reached for the oil and was able to bend his leg and put oil on both his feet.  I was like, wow! I told him that he was holding out on me.  I am not sure that I am going to put oil on anymore! Seriously though, good for him.

Every time I think that he is not progressing, he does something he has not done before.  The changes are not as obvious as early in his recovery.  But they do seem to be continuing, thankfully.

God of Hope, we  give thanks for good friends who walk this journey with us.  We are thankful for the kindness of strangers who reach out to us and help to make the journey easier.  Be with us as we sleep this night and sustain our hope and trust in you.  We pray for healing for all who come to you and we pray for Doug's continued healing.  We continue to look forward to the day that he walks again.  Amen

April 25, 2017: Day +155

I have learned something this week, well maybe I knew this, but I relearned it.  Just because you make a plan does not mean that it will work out or last. Yesterday afternoon, I got a call and was told that our bath aide wouldn't be able to serve Doug anymore and a different person would be here this morning.  And so we had another person this morning, which meant it took me more time to show her where everything is and to introduce her to Doug.  And then this afternoon the other company we are contracting with brought another person by that will be here tomorrow morning, because the gal we have had the last 2 weeks won't be able to make it in the morning. The OT cancelled and rescheduled for 7:00 am on Monday morning. It will be interesting to see how the rest of the week goes.

Hoyer Lift

We have lots of equipment in our house to help Doug and I. I realized that I talk about the equipment but have never shared it on the blog. And when I was talking to my friend Ingrid the other day and she said she was wondering what our Hoyer Lift looks like and so today I thought I should share a picture.  While the Hoyer is not the easiest to use on carpet it is very handy for moving Doug especially at night when he is tired and when I am trying to transfer him between places of different heights.  Gravity is not our friend when Doug has to use the slider board to slide uphill. This requires me to do a lot of lifting of Doug because he is not strong enough through his legs to lift his body very far off the chair except for a few seconds.  The green sling, is what is wrapped around Doug.  The Hoyer is electronic and it allows me to move Doug  up and down. Then I able to push him from room to room in the sling or from wheelchair to bed, or from chair to chair.

Not all of out surprises today were challenging. Our friend Will made Doug  parallel bars so that he can practice standing and walking.  Will and our friend Walt delivered them tonight.  We are both really excited to have them.  They are not necessarily an attractive addition to our living room, however they add greatly to what my friend Scotti calls Eileen's Rehab.  Probably better named Doug's rehab because he is the one having to do the hard work.  We are so thankful for this help!

Let us pray:

Holy God, of all the Chances and Changes of this life, we give you thanks and praise for the help of others.  We give thanks for our friends who lighten our load. Today we are especially grateful for the work that Will has done to create and make these parallel bars so that Doug may walk again.  We give thanks for Walt for offering his truck and time to deliver them to us. And we are grateful for caregivers who lighten our load.  Be with as we learn to live with changing schedules and competing needs.  Give us patience to accept the things we don't control and cannot change. Sustain our hope as we look forward to continued healing.  In your name we ask it.  Amen.

April 24, 2017: Day +154

It is the season of Easter: the season of resurrection and the season of transformation. When we look around us we see new life everywhere.  Tulips are blooming, leaves are opening on trees and plants, weeds are coming up, and fruit blossoms can be seen everywhere.  Only a month ago the trees were barren as if they were dead. Shoots from bulbs were hardly peaking up above the dirt.  Everything that had died is coming back to life.

I love this time of year.  Seeing new life is a reminder of the possibility of transformation.  In order for there to be new life, something has to die and be reborn, to be renewed.  As the spring days go by I often think about transformation.  I wait, watch, hope and plan for Doug to experience new life.  I see changes in him from day to day. And for me, I too have to change to accommodate the changes in Doug.  I have to adapt to his current needs and at the same time hope and dream for the future.   I have to allow myself to be transformed as well.

On this journey both of us are being called into change.  Both of us have had to do things differently.  Both of us need to look forward with hope and joy, to the possibilities that the future holds.  Interesting sometimes even when you anticipate change and hope for it, it can still be challenging  to adapt to what the future holds and requires of us.

And so during this season of new life and our own personal resurrection, we pray that we will be continually open and willing to take on the mantle that is being placed upon us and be recreated so that we may live fully and joyfully.

And so we pray:

God of New Life and Good News, be with us during this season of Easter.  Help us to see what needs to die in us, so that new life may be born in us.  Help us to live fully. Help us to "be not afraid".  Open
our hearts and our eyes to the possibilities that lie ahead.  In your name we ask it.  Amen.

April 23, 2017: Day +153

Doug woke early wanting to get ready to go to church.  He is able to shave now by himself. This is good since his hair is growing back and I am terrible at shaving him.  He was able to mostly dress himself.  He was ready to go in less than an hour.  This is a great accomplishment.

He enjoyed his time at church.  It is so nice for us both to be able to worship and to be in community with the rest of the congregation. We had some difficulties getting back into the car after the service.  But thanks to the help of Walt and Julie he made it in! Whew!!!

After church we picked up some fast food and headed up to Lucky Peak to see the rooster tail water that was being released from the dam.  It was really spectacular.  We then continued on to Idaho City. Doug had not been up this way for a very long time.  He enjoyed getting out and seeing the high water in the rivers and streams.  We stopped and got an ice cream in Idaho City before heading back.  On the way back, Doug wanted to stop at Robie Creek.  Both of us had been following the Robie Creek 1/2 marathon for many years but did not know exactly where it was.  And so on the way home we took a detour when we saw the Robie Creek sign to check it out.  On the way home we took another nice long look at the rooster tail along with hundreds and hundreds of people.

It was great to have an outing today with a chance to get out of town for a few hours.  When we got home Doug was tired but not overtired. He was ready to rest and to watch some T.V. to finish out the day.

God of Power and Might,  we see you in your people, in the power of the river,  the thick forest, the deep canyons and towering mountains.  We are grateful to worship you in church and in the world. Be with us this night as we rest.  May we rest in peace and awake to all the beauties and challenges of the new day.  In your name we ask it.  Amen

April 22, 2017: Day +152

Last Saturday night, the night before Easter I wrote prayers for our Easter Sunday service and needed to print them to take with me to church in the morning.  After much effort, trying to get the printer to work, I finally gave up and emailed the prayers to my sister and asked her to print them for me and bring them with her to church. She delivered them to me in the morning.  And so on Monday morning I helped Doug to get into the car and we went to Best Buy to buy a new printer.  Amazingly they were on sale! I got one that scans, copies and faxes.  Then Wednesay or Thursday I tried to hook up the new printer and everything went well until I put the CD in my old Mac computer and it told me the operating system was too old. Apparently now I have to buy a new computer.  And so for the last few days I have been trying to decide if we should buy a Mac or a PC.  We have had a Mac since the Apple 2E first came out.  Could we possibly buy a PC now?  Doug doesn't think so.  Our present Mac we have had since 2004!  We updated the operating system once.  What to do...  We went back to Best Buy today to look at all of our options. What computer to buy? So many decisions to make.  It was good for Doug to get out for a little while with me and marvel at all the electronics in the store.  I am hoping if we sleep on it, we will have an answer by tomorrow.

Doug was pretty tired today.  He was feeling very weak.  This made getting in and out of the car pretty difficult.  One of our HSCT friends posted the image below on her facebook page yesterday. It is a good reminder on how long it takes to feel better and to heal from HSCT and MS.  It can be so frustrating, waiting to feel better and hoping to feel better.  Of course Doug has the double whammy of recovering from the poly-neuropathy. For us, we don't know how he is recovering from the HSCT. We can only hope that his new stem cells are continuing to support his healing. And so, along with all of our friends who have undergone  HSCT, we continue to pray for recovery, healing and wholeness as we celebrate 5 months post treatment.




Today, I received this post card in the mail from the staff that work at the Episcopal Diocesan offices. Bishop Brian and the rest of the staff signed it.  They remembered me in prayer.  It made my heart happy to be remembered and reassured to know we are being held in prayer.  And so with thanksgiving I want to share this prayer with all of you.

April 21, 2017: Day 151

Tonight I asked Doug if there is something he wanted me to share in the blog.  He said "Well, I stood for 2 minutes, 3 times today".  That is 30 seconds longer than last week, and more forward progress. He said his legs were shaking and it was hard, but he did it!  His physical therapist said it means that your legs are working.  They are waking up.  She is encouraging.

This afternoon I took the time to have lunch with women from our church.  Doug wanted me to get out and do something besides stay with him.  He was happy to eat lunch that I made for him and to take a nap and watch some TV this afternoon.  It was nice for me to get out and he was such a good sport to be on his own for a while.

This week has been an interesting and fast week.  Several friends have shared with me things they are struggling with.  They have made stop and think, how do we get through difficult things.  Well, one day this week, when I was driving home I accidentally bumped the radio and the channel changed to a Christian Radio station.  I have never listened to this station before.  I decided to leave it on for a few minutes to see what the preacher had to say.  He talked about Christian joy.  Essentially he said that the reasons that Christians experience joy is not because everything in their lives are wonderful, but because the joy they experience is deeper, it comes from a strong belief in our God and the new life that we are offered through Christ.  It comes from living a life of faith. So many things happen in our lives that can rock us and distress us. We may bounce about like a leaf in a stream,  unless we have an anchor.

I am thankful for having God as an anchor in my life.  I am thankful in knowing that we are in for the long game not the short game.  When things are really challenging I try to step back and remember what all I have to be thankful for.  I try to remember the joy that is deep in my heart, where God lives. Knowing that God is with us, gives me confidence to keep taking the next step.  In sitting with a friend today, I shared with her a quote that has helped me since Doug was diagnosed with M.S., "Life is not about waiting for the rain to pass, but in learning to dance in the rain."

God of Joy and Dancing, we thank you for your invitation to the dance.  We thank you for your presence in all things in our lives.  We thank you for the anchor you give to our souls. Today we thank you for Doug's standing.  Be with us in  all our troubles, lighten our hearts when we are distressed and help us to see you in all things.  Help us to dance.  In your name we ask it.  Amen

April 20, 2017: Day +150

Today Doug demonstrated more  new skills.  He was able to transfer from the bed to the wheelchair with no slide board this morning.  This is his easiest transfer because the wheelchair is only slightly lower than the bed.  He is helping with dressing which means getting up in the morning is much faster.  Then this afternoon when Doug was transferring in and out of the car he was able to move more of his body on his own.  I had to do much less lifting of his hips to get him onto the slide board and he was able to do more of the sliding on his own.  He seemed more confident in his ability to move himself.

Doug had a doctor's appointment this afternoon with his primary care doctor.  I called her when Doug was in the hospital at Christmas and she came over to visit him.  Doug has been seeing her for 20 years now.  She was really glad to see Doug today and so glad that he looked so good.  It is really nice to be under her care again.  She really cares about Doug and knew him before the MS.  She is very supportive of the stem cell transplant.  She is willing to help us to get the next treatments that Doug needs. We need to find a hematologist to do the retuximab infusions.  Retuximab is a chemo drug that is used to reduce or eliminate the T and B cells that carry the memory of M.S.  She is going to do a referral for Doug to a local hematologist.  We hope this will work out.  It is nice to have her support. Many people are having trouble finding hematologists willing to do the treatment since the procedure is still in clinical trials.

After Doug's appointment we went out for Thai food.  Doug loves Thai food and so this was a real treat.  It was a delicious lunch/dinner and a great outing.  Each day we get closer to normal, our normal.

And so we pray:

Merciful God, we thank you for the care and support of so many caregivers, therapists, and doctors who have been a part of our journey.  We thank you for continued support as we continued to move forward trusting in your goodness in the world.  Be with us now as we look for a hemotologist to provide for Doug's continued  treatment to assure that his M.S. progression has been stopped and his body may continue to heal.  In your name we ask it.  Amen

April 19, 2017: Day +149

Today, Doug and I were having lunch.  He was in his recliner when I got home.  His physical therapist had helped him into the chair and so we ate in front of the TV. It is a lot of work to move Doug from chair to chair.  While eating lunch we were watching MSNBC, Doug's favorite news channel. I looked over at him, and he was sitting in the recliner, easily moving forward with his elbows on his thighs and sitting back and then repositioning again.  He could not do this last week.  He was sitting so normally in the chair.  Moving his trunk so easily back and forth.  His core is getting stronger.

He told me that his physical therapist had him standing serveral times and was using a disk to transfer him from chair to chair.  She did not use the slider board or the Hoyer.  He says that standing is very hard for him and he tires easily.  His legs are still very weak, but he is doing it.  He keeps practicing.

I suspect his improvement would have been faster in the rehabilitation center.  However, he is so glad to be home.  He is moving forwared, if more slowly.  And I am more relaxed.  Today I took a nap.  When I awoke, I said to Doug, that I so wanted just to sleep the afternoon away.  I fell so deeply asleep.  I think I am just now beginning to really relax.  I don't feel like I have to be so diligent.  I can begin to think about other things, like reading a magazine or planning a garden.

And so we pray:

God our Sustainer.  Thank you for the strength to continue and to remain hopeful.  We are so grateful that Doug continues to make small improvements.  And we are thankful for home. Be with us as we dream. Be with us as we step forward.  Be with us in our hope for the future.  Help us to see you in each new movement.  And fill us with joy, as we live into new life.  Amen

April 18, 2017: Day +148

It is really hard to believe that it is the 18th of April.  Doug has now been home 2 weeks.  Yesterday morning when we were laying in bed I told Doug is was so nice to lay in bed and not have to plan the day around the hospital and work. He talked about how nice it is to be home, sleep in his own bed and keep a lot of his own schedule.  This week is feeling more relaxed then last week, even though it is only our second week of Doug being home.

This morning the bath aide showed up 10 minutes early and ready for work.  I was able have breakfast ready for Doug and walk out the door on time.  Everything happening according to plan making for a much easier start to the day.  His therapies the last two days have gone well.  Will is working on making parallel bars for Doug. The days are developing a rhythm.

This afternoon, we enjoyed lunch with our friends Harry and Cory.  They are heading back to Oregon on Thursday.  We will be sad to see them go.  Harry was so nice to put the two new tires on Doug's wheelchair for me.  That was a big help.  I can definitely say that repairing tires is not one of my favorite things.

Late this afternoon we went to see Lion with Kate, Angie and Cole.  It is a wonderful movie.  It is a story of resurrection.  It is a true story about a boy who becomes lost in India, is adopted by an Australian couple and eventually comes back to India to find his family of origin.  It was great for Doug to go out to a movie.  He had been having a craving for popcorn.  Seems like we keep having a series of first lately. We have had so little time with our grandson Cole, it was pure joy to be with him. Every time Doug gets to do something that makes his world a little bigger it feels like a resurrection experience.

God of New Beginnings, we give thanks for home and outings, for the company of friends and families and most of all for an abundant life full of new beginnings.  Be with us as we sleep and as we awake.  Help us to greet the new day with anticipation and hopefulness. And God be with us with each step,  heal us and bring us to wholeness.  In your Name we ask it.  Amen.

April 17, 2017: Day 147

Easter Day was a wonderfully full day.  Doug was able to attend church with me in the morning. It is still a lot of work to get him in and out of the car but we were able to do it and when we got to church we had help from Will and Fr. Dave.  We spent time after the service visiting with friends.  It was very nice for Doug to see so many friends and to be able visit with people.

After church we came home and my sister, my daughter Angie and her family and my son-in-law's parents came over for an Easter celebration.  Doug had been really looking forward to this celebration.  He was excited to eat delicious food and have a day with family.  It was the first time we have had a normal family gathering for a very long time.  It was nice to have things feel normal.

Grandson Cole and Foster Grandson Jordan
hunting for eggs with their new Easterr bunnies.

Thelma and Henry, Tom's parents, brought me a prayer shawl, blessed by their congregation.  It is beautiful.  I told Thelma I will wear the shawl each night as I write this blog.  It will remind me of the prayers that surround us. Just as we keep our quilt close by that was blessed for Doug before leaving for Mexico. The prayers of so many have sustained us and brought us to this Easter season. It is truly a miracle that Doug lived and that one day soon he will walk again.

While Doug was tired from such a big day, he was able to stay awake all day and go to bed at a normal time.  This is a big step forward.  And today after such a big day, he was not anymore tired then he might be on a normal day.  With MS, the day after a big day can be really tiring. I think it is a good sign that Doug was able to participate in all his therapies today and is going to bed at a normal time.

Today he surprised me by being able to put on his own pants and his own shirt while laying in bed.  He then brushed his own teeth, washed his face and combed his hair.  This is a big step forward.
 He is still moving forward.

The Easter season is 5 weeks.  During this time we will focus on practicing resurrection. I told Doug today when he was trying to get in the car and it is so difficult that our job is to focus on moving forward.  What happened to him when he was very sick is over.  We now work on developing new skills and new life.  We have much to be thankful for.  He has healed so much from those early days of January.  He still has a ways to go but I am grateful everyday he gets skills back. It is time now to start planning for the future and to live.

God of New Life, we give thanks for your presence in our lives and the gift of new life.  During this Easter season help us to die to those parts of our lives that are not bearing fruit and to open ourselves to new possibilities and new life.  Help us to believe in things we cannot see. Help us to keep moving forward in faith and hope.   In your name we ask it.  Amen.

April 15, 2017: Day 145

Holy Saturday is coming to a close and Easter will soon be here. The joy of this Easter is that Doug is home.  When we were in Mexico we  could not get the traditional Thanksgiving food to celebrate Thanksgiving.  And so Doug was really looking forward to Christmas so that he could have turkey with all the trimmings.  And then he was in the hospital and intubated for Christmas.  By New Years he was awake, but still very sick and was being tube fed. This Easter will be more special as his first celebration in a long time and he is embarking on new life again.

We both are feeling pretty tired. Being home is really nice, but it is a lot of work for me and it is a whole new adjustment for him.  This Easter I did  not do the usual decorating and preparing for Easter. I wish I had a little more  umph. It will be a minimalist Easter. My sister, daughter and her family and my son-in-laws parents will all be here for Easter which will be nice. It will be the first time we have had everyone over since Doug came home.  We look forward to a day of celebration and joy. Happy Easter everyone.

The great gift of Easter is hope - Christian hope which makes us have that confidence in God, in his ultimate triumph, and in his goodness and love, which nothing can shake."

Basil C Hume, (1923-1999)Cardinal Archbishop of Westminster

Read more: http://www.lords-prayer-words.com/times/easter_prayers.html#ixzz4eOB7vK2l

April 14, 2017: Day 144

Good Friday

Last night, being one of the last to leave the church on Maundy Thursday, looking around there is always a starkness to the sanctuary.  All of the reserved sacrament has been disposed of.  The Alter Guild take our stoles and the alter cloths before the service is over. The crosses are covered in black cloths.  Everyone leaves in silence.

On Good Friday we are left with an emptiness. We are left with loss. This is that liminal space between the death and the loss of Jesus, with what will come with the promise of Easter.

The thing about loss, is that we often get lost in it.  It is hard to see the possibilities of what will grow from it.   It is hard sometimes to believe in the promise.  As I reflect on the last few months with Doug, I have held tightly to the promise of life and refused to believe he won't recover.  Is that stubbornness or is it faith? I don't know.  But even though there are hard days, and I wonder how long I can care for Doug at his current level of functioning,  I have to remember that this is just a time of transition. There is the loss of what was, but there is also the promise of new life.

We never know what that new life will look like. But I am reminded that God is doing better things for us than we can ask for or imagine.  Our job is to look with new eyes, to see the possibilities to come. And so for a time we live in this liminal space of what was to what will be.

Will, Doug and Fr. Dave.  Doug's first time at church in 5 months

God of Death and Resurrection, on this Good Friday, we are reminded of the pain and agony of your suffering. We are reminded of the loss of your life and the loss of your goodness in the world in a way we could not understand.  But we believe and know that you never leave us lingering in that loss and we are thankful.  Help us during this tridium, to review our own lives and to die to that which does not bring life so that we may awake this Easter to new joy and new life. Amen

April 13, 2017: Day + 143

Today we had 2 bath aides show up at 7:15 from different companies.  More is better than less!  One came today but she is suppose to come tomorrow and so we hope she will be here in the morning.

Another big event is that Doug went to his first church services since October 30.  He went to Maundy Thursday services.  It was really nice to be able have him participate in services again.  It was a big night for him, and much for him to do, but he wanted to be there because I was preaching. 

Since we have had a very long day, instead of writing anymore I am copying my sermon here.  It captures my heart and thought on this Maundy Thursday.  I am preaching on the Servant Song.  If you have never heard it you may want to click on this link. 

https://video.search.yahoo.com/yhs/search?fr=yhs-mozilla-004&hsimp=yhs-004&hspart=mozilla&p=servant+song#id=35&vid=e2f3866670e778b92f652e44afb4b2dc&action=view

Maundy Thursday Sermon

April 13, 2017

Tonight, like so many years ago, we are drawn into the mystery of this evening. Long ago, Jesus, sat with his friends, and reminded them of what was most important. He told them they were to be servants. He told them “that you should do as I have done for you”  The word servant may not have sat with his friends very well that night. Servants held a low status in society. Today, we don’t often take kindly to being someone’s servant.  

When Doug and I got married almost 22 years ago, I chose to sing the Servant Song to him, as a vow I was making to him.  Looking back I can’t remember why I chose to do that.  Anyone who knew me very well knew that I was a “woman’s liber”.  I had the t-shirt to prove it, “A woman needs a man as much as a fish needs a bicycle”.  But I guess, somewhere inside I also knew that to make a marriage work we would need to serve each other. Over the years this song has been an important reminder to me as who I am called to be as a wife, mother, friend and as a Deacon in the church.  Tonight, with Jesus as servant, as foot washer, I decided I want to share this song with all of your.  And so tonight I am going to read a short reflection and then we are going to alternate singing the verses. So please take out the music for the servant song.  I after the refection I will sing the first verse, then I give another reflection and you will sing the second verse and so on and so forth.  After the 5^th verse we will all go back and sing the 1^st verse.  Please don’t worry about what you will be doing.  I will tell you along the way.  I just want you to be prepared.

The Maundy Thursday gospel reading, reminds us to serve each other, but not just serve, but to be a servant to one another.  Foot washing is a very personal act. Too wash someone’s feet are to care for another in a deeply personal way.  When we wash someone’s feet we stoop to serve them.  To allow another to serve us, we also must humble ourselves. We must rid ourselves of our false pride, our ego, we must accept the help from another.  Sometimes this is a harder act.  Especially in this world where we associate strength and power with being independent, and able handle things on our own.  We may want to reject the help of others.

Eileen sings…

Will you let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let me be your servant too

We are pilgrims on this life journey. To be a pilgrim means: a person who journeys, especially a long distance, to some sacred place as an act of religious devotion.  If you are here tonight, and you await the day of resurrection you are a pilgrim.  You will travel a long distance in your life searching, longing and experiencing the sacred. And while we have examples of those who travel alone like the hermits of old, more often if we are lucky we will travel with friends. Jesus did not travel alone he traveled with his friends.  He loved them and they loved him back.  His expectation was that they would continue on after he was gone. As we travel this spiritual journey we will see beautiful vistas filled with great joy and love, but we also will experience hardships and troubles.  The pilgrim’s road is long.  There may be times that we become discouraged or afraid. It is during these times that we need our friends to help carry our loads.  It is also at these times that we need to share our joy when we are feeling blessed and we encounter the holy.  Life is better when shared.   Remember what Jesus did the night before he died.  He sat, and he shared bread, wine and fellowship with his friends.  He told them that he loved them.

 

Congregation  sings…
We are pilgrims on the journey
We are friends upon the road
We are here to help each other
Walk the mile and bear the load

When have you been afraid and what did you need? When I am afraid, I need the presence of a friend.  I need someone to be with me. Usually I am not looking for advice. I am looking for presence.  I need someone to shine light the path.  I need their light to shine on me.  I need someone to meet me where I am and to tell me everything is ok.  I need someone to speak peace to me.   Some time back I was feeling very discouraged and fearful.  An acquaintance came and was telling me how to fix the situation. He was very sure of himself.  Now in truth that solution would have worked perfectly for him. But only I could find my own truth.  When we hold the light for each other we act as a beacon. When we put on the consciousness of Christ our interaction brings peace and hope.

Eileen sings …
I will hold the Christ light for you
In the night time of your fear
I will hold my hand out to you
Speak the peace you long to hear.

Who are your friends? And whom are you a friend to?  My dear friend Scotti is such a great example for me of what it means to be a dear friend and a fellow pilgrim.  When I weep, she weeps. When I laugh she laughs. That tenderness makes us close.  We know each other’s hearts.  At Christmas when Doug was so sick, it was Fr. Dave who sat with me, cried with me, rejoiced with me.  He walked the pilgrim’s path with me. When I am with Doug, I know that he will share my joy and sorrow.  He won’t try to fix it.  He has confidence in me, and in our God, to know that the answer will come. In keeping my blog about our journey to healing and wholeness these past months, many have shared our joys and sorrows.  They have been our pilgrim friends. They are with us till we see this journey through.

Congregation  sings…
I will weep when you are weeping
When you laugh, I'll laugh with you
I will share your joy and sorrow
Till we've seen this journey through.

Is there anything sweeter than to be with people with whom you call friends?  There is such sweetness in having friends who know the agony you have been through and the love that you have shared.  When I walked the Camino de Santiago, the 500 mile pilgrimage across northern Spain.  I shared that time with my daughter Angie and with a group of 6 others, from Canada, Ireland, Michigan, and Germany the last weeks.  Through all the blisters, the tendinitis, the shared dinners, the beautiful vistas and the daily walks we began to love and serve each other.  When we reached Santiago and looked around and saw all the other pilgrims who had suffered and endured, we were all overcome with joy.  The same is true in this congregation.  When we share each other’s journey and then come together to worship our God, who is with us through it all, each Sunday morning, there is such harmony.  There is sweetness and warmth in sharing this sacred journey.

Eileen sings…
When we sing to God in heaven
There will be such harmony
Born of all we've known together
Of Christ's love and agony

We celebrate the servant journey this night as we remember the actions of Jesus.  We are reminded that Jesus gave us an example.  We are to lay down our lives for our friends.  And I ask you, who should we call friends?  To know Christ, is to serve others.  Not just on a surface level. Not just in the giving of what is easy for us to give.  It is in stooping and washing another’s feet. It is seeing Jesus in the calluses, the corns, the veins, the stiffness and the pain in each other’s feet.  It is living in the mystery of the love and the agony.  For Jesus said: I give you a new commandment; Love one another as I have loved you.

Congregation

Will you let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let me be your servant too

And Jesus said: “you should do as I have done for you”  “By this everyone will know that you are my disciples,” Amen

April 12, 2017: Day +142

Today started about the same as yesterday.  Our provider we hired to help get Doug up and get him breakfast, from a private company, did not show up until 7:45.  So things were a little frantic this morning.  I was calling the agency when she knocked on the door.  She said she was coming from Star and got pulled over on the way.  The plus side is that she did show up.  The down side was that she was late on her first day with us.  She was very apologetic and Doug did like her.  Later in the day the RN who is the case manager came over to the house and reviewed Doug's health plan with us and talked to us again about what happened.  She said that the company policy is for the employee to call the company if he or she is going to be late and they will send someone else until the person is able to get there.  And so we will see how tomorrow goes.

Doug had physical therapy with Kerry today.  He said the high point was that he was able to stand for 90 seconds.  While that does not seem like a long time to him it was a step in the right direction.  Afterall he was standing!

Tonight, our friend Penny brought us a delicious dinner.  We enjoyed Cornish hens, stuffing, salad and beans.  It was was so thoughtful.  It was nice to sit down together to a very nice dinner.  Thank you so much Penny!

Bedtime routines are getting easier or I am getting stronger. I am sure we are building confidence in accomplishing everything we need to do to get Doug ready for bed.  I don't think I will need to cover the carpet so the Hoyer moves more easily.  I think I have a system down that keeps me from breaking a sweat. Either that or I am building muscle. :)

Let us Pray:

Hold God,  we give thanks for all our friends who continue to encourage us as we grow into these new routines.  We are thankful  for the team members in the agencies we are working with that are willing to help out when thing go wrong.  Be with us this night that we may rest in peace and awake tomorrow refreshed and ready for a new day.  Amen

April 11, 2017: Day +141

Day 2 on the new schedule did not go quite as well as yesterday.  We were expecting a bath aide for Doug this morning at 7:30 but no one showed up.  I had not been given the name of the person and had no way to get hold of her.  Poor Doug was in bed, I needed to go to work, and so at the last moment, I was having to get him up and into his wheelchair in his robe.  Getting Doug up is no small deal, but he did his best to help me. I had breakfast ready for him and so I left him eating breakfast. I left for work a few minutes before 8, calling his RN case manager and our friend Will.  Will  was going to be at our house at 9 to help Doug with his OT and PT.  Doug's RN had planned on coming out at 9:30 to check on him, but he told me he would also get Doug dressed and get him set-up for the day since his aide did not show up. That was a relief.  The bath aide called Doug and said she had accidentally slept in.  He was pretty upset about it.  It caused lots of stress for both of us, but I think it was harder on Doug.  He was worried about me needing to get to work and he was left feeling vulnerable.  Hopefully this will not happen again.  We have a different privately hired personal care person coming in the morning to get him up and dressed and to make him breakfast.  Hopefully this will go better.

Will worked with Doug on his OT and PT exercises and they both felt like that went well.  Will is helping us to get some parallel bars made for Doug.  This equipment will be very helpful to Doug to get him walking again.

Doug had a doctor's appointment this afternoon. Will was gracious enough to stay and help me get Doug in the car.  This was the first time Doug has been out since he got out of the hospital.  It took some work but we did it.  The only thing is that I then needed to get him out and in and out by myself.  Well, I am very proud to say we did it.  Slowly, with some difficulty, but mission accomplished.

After the doctor's appointment we went to a drive-through for lunch and then took a drive around town.  It was nice for Doug to see the new building in town and to just get reacquainted with home. We stopped on the way home and picked up another new prescription and then headed home.  We spent a couple of hours out.  Doug was ready for a nap when we got home and so was I!

The evening routines of getting Doug ready for bed are going more smoothly.  I have discovered some shortcuts and easier ways to using the Hoyer on carpet.  I did not even break a sweat tonight!Whoohoo!

And so we pray:

Holy God, we give thanks for the blessings of this day.  We give thanks for the small pleasures of car rides and lunch out.   We give thanks for friends and service providers who jump into help.  We give thanks for team members who help and support us. Be with us as we find our way with this new schedule. Be with Doug as he settles into home and continues to heal.  In your name we ask it. Amen.

April 10, 2017: Day +140

As my friend Karen Hernandez has said, "Today was a red letter day".  Everything went according to plan.  This morning I helped Doug get up, cleaned up and dressed. He was able to help me and then use the slider board to get into his wheelchair.  He brushed his teeth on his own.  Then I was able to get a shower and dressed for work followed by answering a few phone calls and sending a couple emails.  Then I made Doug lunch and was ready to go by noon.

At noon Will came to be with Doug, followed by his new OT at 1:00 and the PT at 2:00.  Everything seemed to go very well.  Will was able to watch all the therapies so that he can help Doug with them on the days that the therapists are not here. Doug said that the PT helped him to a stand and he was able to take a few steps. His OT said she was going to figure out a way for him to shower.  We look forward to hearing her ideas.  Doug seemed pretty relaxed tonight.  I think it was good for both of us to know that the plan for having everyone come to help him went well.  Tomorrow will be a different schedule.  Instead of starting at noon it will start with a bath aide coming at 7:30, about the time I am going to work. That will be another new adventure.

Tonight we give thanks for a safe and successful day.

Merciful God, we give thanks for the mercies of this day, for Will and the therapists who came as scheduled and helped Doug to continue to gain skills and for my superintendent allowing me to change my schedule so that we could arrange for the best care for Doug, that is affordable for us. While our days have changed so much we are thankful for the last few days that have allowed us the time to figure out how to care for Doug in our home.  We give thanks for the good friends who have encouraged us through all these changes.  We give thanks for all who have held the Christ light for us when we have been afraid.  Be near to us in the next few days as we continue to find our way with all the changes in our lives as we continue to seek wellness and healing for Doug. Amen

April 9, 2017: Day +139

Today being Palm Sunday, we enter Jerusalem with Jesus.  We enter Holy Week.  Jesus enters triumphant, yet humbly.  The crowd that gatherer's has great expectation and great hope.  No one knows what is about to unfold in the days to come.  Such is the spiritual journey.  We take our first steps in our pilgrimage filled with hope and expectation.  We often don't want to entertain the darker side: the bumps, mountain cliffs, the steep grades, the loneliness, the unpredictability.  These are all part of the pilgrim's journey.  After Jesus enters the city, the week will be filled with celebration, disillusionment, sadness, helplessness and finally triumph.  The pilgrims journey is no different. Ultimately, as we journey to God, our own paths will be no more predictable, no more certain and no less challenging.

What brings me to this reflection this night?  I am sitting quietly reflecting on Holy Week and preparing my heart for resurrection and transformation.  To have made it this far on our pilgrimage we have had to rely on our relationship with God, in our hope in the resurrection and in the importance of the journey.  It is a journey of hope and it is a journey of trust.   Coming home is presenting it's own challenges.  Doug feels more frustrated, because he can not do the things he did before going into the hospital.  He is dependent on me for most things.  That is not easy on either of us.  To live through this time we have to keep our eye on the destination, not the present moment.  We have to move toward Jerusalem, toward transformation. We have to live into joy.

And so we pray:

God of Transformation, we give thanks for the gift of home and thanks for the gift of time.  Be with us as we move through the struggles of this new transition.  Help us to trust in our capacity to meet the challenges of the day and to trust in your presence in all circumstances. Help us to live in the liminal space between triumphant entrance and crucifiction and finally transforamtion.  By grace, may we find joy in each space. And God we continue to pray for Doug to be healed, for him to walk and for him to serve you.   In  your name we ask it.  Amen

April 8, 2017: Day+138

We Are Better Together

Today was the Boise MS Walk.  Doug and I were there in Spirit.  We really wanted to go.  But even though we were tempted, better sense won out.   Transferring seats let alone in and out of the car is really hard for Doug, driving in and out of Boise takes about 80 minutes and then of course there is the walk.   That would be way more than Doug has done and so we had to just hope that it was a great success.  I know that we had several friends marching in their St. Stephen's stomps out MS t-shirts. We are really thankful for all who walked and donated to this important cause. Hopefully with the research that is sponsored by the MS society the world will be free of MS. We loved the theme too, "We Are Better Together".  Surely we have learned this in our life.  I want to take this moment too to remember all our friends with MS and their families.  We surely are better together and are grateful to walk this walk together. We love you all and are especially grateful for our Mexico group.

Today was really a pretty good day for us.  We only had one appointment with a medical social worker.  The good news from that appointment is that we learned that there are 10 hours a month of respite care available for us.  That means that if I need a break that there is some help available.  The service is at no cost to us.  The social worker will meet with us next week to help us fill out the paperwork for the service. We also learned that if Doug is not continuing to make progress, she can help with a referral back to a rehab facility.  While I hope he will continue to progress at home it is nice to hear that we may have a safety net. The meeting turned out to be very worth while.

Doug had a pretty good morning.  He was able to get his shirt on by himself.  He also was able to transfer from the bed to his wheelchair with minimal support from me and from his wheelchair to the recliner.  He made himself a latte with our espresso maker and brushed his teeth at the sink.  He is making progress.  He was much more tired this afternoon and evening and needed a lot more support. But we both felt good about this morning and see what he could do helped to believe in his continued progress at home.

Tonight Julie and her family brought us over a delicious dinner.  It was wonderful to have home cooking and so nice to have one less thing to do.  We sat down and really enjoyed the meal.  Thank you Julie, Michael, Elenore and Maria! We are so grateful.

And so we pray.

Holy God,  we are thankful for the goodness of others.  Today we are especially grateful for eveyone committed to raising money for continued research to wipe out MS.  We pray that one day no one will suffer from this disease.  We also thank you for the help and support of others.  We are especially thankful for the help offered by Shannon our new social worker and for the Straight family, for giving of their time and talents to provide us a delicious dinner during this time of change and new challenges that we are presented with.  Amen

April 7, 2017:Day +137

Doug with his new OT, Elisa

Today is our second day home and the busyness continued, along with continued feelings that everything we are doing is new. Doug keeps waking up around 5:00 because that is the time that he had his vitals taken for the first time every morning in the hospital.  He was pretty restless and so a little after 7:00 we decided it was time to get up.  By 8:30 I  heard from the Home Health OT and PT to let me know when they would be arriving.  Our first appointment was scheduled for 12:00 noon.  I was relieved we would not have anyone over early.  This gave me the time to help Doug get cleaned up and dressed and then I made a nice breakfast for us.  This was a step up from yesterday!  I even had time to throw in a load of laundry and put away laundry from yesterday.  We took the time to organize all of Doug's pills in a pill organizer.  He has 10 new medications.  Having them in the pill organizer will be easier for both of us. I keep having to check and double check to make sure I have given him the right pills.

I was really pleased with both the OT and PT.  They were both very personable and professional. Both of them spent time listening to our goals for Doug as well as hearing the story of what has happened to Doug over the past few months. Both of them understood our concern that Doug would not be getting as much therapy as the hospital and might not progress or progress very fast. Both of them had some great strategies to intensify his therapies with some recommendations on what we can do at home.  His PT got Doug into a stand and walked a couple steps with him and transferred him standing from one chair to another.  I was very excited that she was able to get Doug on his feet by herself.  I think she will do really well with him.  She shares the vision of getting Doug to walk again.

After the PT left a little after 4:00 I took a few minutes to pay some bills and make a grocery list.  We got Doug back into his recliner using the slider board which is a big work for both of us and I headed to the bank and to the store.  Doug took the chance to take a nap and  watched the evening news. When I got home I made dinner for us and then we did some of Doug's evening routines.  Getting him into bed tonight was not as difficult.  We are both learning. 

Tonight I am heading to bed a little more relaxed.  I have a schedule with all of Doug's care givers, bath aides, OT, PT and nurse for next week.  And I also have a new work schedule for me.  And so hopefully next week will go smoothly.  

Let us Pray:

God of our Journey, this pilgrimage is pushing us to places unknown, forcing us to change and pushing us to do things we don't want to do.  It is sometimes hard to quiet our souls and to continue to take the next step on the path.  We give thanks for Doug's new OT and PT, who share our vision for the future and their willingness to join us on this journey. Their presence today has bolstered our hope and encouraged us to keep taking the next right step. Be with us this night, that we might rest in peace and awaken tomorrow filled with hope for the new day.  In your name we ask it.  Amen

April 6, 2017: Day 136

Jared, Doug's RN from Multicare, signing papers to begin services.

Okay, first full day home and it was a full day.  Maybe you remember when you first brought home your new baby and everything in your life changes.  You are trying to figure out a schedule, how to use the baby's stuff, equipment, etc.  That is how it felt today.  Using the Hoyer on carpet was really hard. I did not know that until I had Doug in it.  Things people did in the hospital with two people I am trying to figure out how to do myself.  Oh boy....

Jared our new case manager and RN  from Multicare came at 10:00 this morning.  He reviewed all of Doug's medical information, took vitals, set-up a plan and had us sign lots of paperwork.  We liked him.  I think he will be a good fit for us. He will be out weekly.  He left about 12:30.

At 1:00 Jenny from Allegiant Home Care came with provider De.  De will be coming in 2 mornings a week to get Doug up, get him dressed and get him breakfast.  Like Jared, I showed them around the house, showed them our equipment and showed them where everything is located. We did all the paperwork and they got to know Doug a little bit.  Everything went very well and I feel good about them serving Doug.

While they were here, Loretta, Mark and their friend showed up to do some spring yard clean-up.  It finally feels like we are making some progress and that things are coming together in everyway.  It was really nice to walk out the front door and have the grass mowed and the old branches and dead plants cleaned up. It is nice to be home and have the time to look around.

Unlike a regular schedule at the hospital, nothing happened in a regular fashion today. The morning routine took us so long that we were just getting ready to have breakfast at 10:00 when Jared got here. Doug had asked for cinnamon or orange rolls.  The rolls were not ready at 10:00, but at least we had something to serve our guest!  Because Jenny arrived shortly after Jared we did not get lunch until 2:30.  Doug was more than happy to eat the left overs (fried chicken) that Tom brought us last night. Which means dinner did not happen until 7:30.  I will try to do better tomorrow!

Best of all, we both got a nap this afternoon; a long nap.  This is the first real nap I have had in so long and it was a nap that I was not worrying about getting back to the hospital to see Doug.  Guilt free. I laid down on the bed and fell sound to sleep. I have a feeling I have been so sleep deprived over the last few months that it may take a while to catch-up.

Reviewing the day, after all the difficulties of the last few months, I am thankful that all the pieces are falling into place for Doug's caregivers.  One way or another we will figure out a routine.  His new OT and PT will be here tomorrow to evaluate him and come up with a plan for home.  My big worry is that he will not get enough therapy to continue to make progress.  Our friend Will said that he will be able to come out and help on the days that the therapists are not here. This is reassuring! The therapists will start with 3 days a week and may drop back to 2 days a week.  We will see.

Finally, thank you to everyone who has commented on the blog and sent us your well wishes. You all bring us hope and strength as we travel on this journey.  We are so pleased to be able to celebrate coming home with all who are journeying with us.

Time to pray:

God of New Beginnings, so much of our lives, both Doug and I have thrived on change and new starts. Somehow the changes and new beginnings have become much harder. Give us patience in the face of so much change.  Help us to lean in

to these changes.  Help us to trust in our capacity to meet these new challenges.  Sustain our trust in your goodness and in Doug's continued healing.  In your name we ask it. Amen

April 5, 2017: Day +135

We are home.  We left for Mexico on November 4.  Doug had 4 days at home in December before he was admitted to the hospital in December.  He has essentially been away from home for 5 months. He was so ready to come home.

The PT asked me to come at 1:00 this afternoon to practice with Doug using his new slider board.  We practiced with the car.  Three weeks ago they were telling me that I would need to pay for special transportation home because Doug could not get in a car.  Well, using the slider board we were able to get Doug in the car and out of the car.

Doug enjoyed the ride home, taking in everything, noticing the new development.  When we got home I asked him if it felt normal to be home.  He said not yet.  He spent some time just looking around taking everything in.

Our son-in-law Tom, was at the house when we got home.  He had a beautiful Easter Lily, card and Oreos for Doug.  He also bought Doug a favored dinner of fried chicken, macaroni and potato salad and baked beans.  Doug was so happy.  Doug drove his wheelchair up to the table.  We were able to eat a regular meal together at our dinner table.  I have not eaten dinner at home since Christmas.  It felt great for both us.  After dinner we watched TV with no one coming in and interrupting the show.  Our schedule was our own.  It was so weird.

There were lots of adjustments.  We had to use the Hoyer lift to move Doug to his chair and bed.  I was breaking out in a sweat trying to get him ready for bed and moved around in bed. We have much to do to come up with a routine and for both of us to feel comfortable at home.  But hopefully after the next few days that will come.  I am grateful to be home. There is much to do to arrange his care, but for tonight, I am letting that go and just resting into our next new normal.

Let us pray:

God of Comfort, thank you for moments of rest in the midst of much change. Thank you for the gift of home our refuge on the journey.  The journey has been long and we are tired.  The hills we have needed to climb have seemed endless.  Today we give thanks for rest and we give thanks for Doug's continuous improvements that have brought us to this day.  We give thanks for our friends who continuously bolster us up when we are discouraged, who recommend resources, hold us in prayerand make us laugh.  Your presence is seen in so many faces and so many comments that are left for us.  How grateful we are for the body of Christ that surrounds.  Grant us peace this night as we sleep.  Help us to awaken refreshed and prepared for the new day.  Amen

April 4, 2017: Day +134

While we only have a single day before Doug's discharge the day still held some surpises.  It seems this roller coaster ride just does not want to end.  I got a phone call this afternoon from the transition coordinator.  She told me that the third Home Health company I had selected would not be able take Doug on because they did not have enough staff to meet his needs.  And so now, the day before his discharge, I had to select another (the fourth) company and see if they if they could and would provide services.  Things are looking hopeful, but I will not know until tomorrow.

I think we will be able to bring Doug home tomorrow in our PT Cruiser.  It if fairly low to the ground.  Doug is still having lots of difficulty with transfers using a board.  I bought a new board that came on Monday called an Beasy Board.  It is a plastic transfer board with a disk in the center that the person sits on and it slides through the middle of the board from one side to the other.  The PT tried it with Doug today and said it is not too functional for Doug right now but will work well for him soon. But I believe we can make it work tomorrow so that I don't have to arrange special transportation for him. Angie and Tom said they would meet us when we get home tomorrow to help get Doug into the house.

Now back to the PT cruiser. I went out to start it to take to the hospital tonight after work and the battery was dead.  I called our roadside assistance and they connected me to a company in Boise to come out and jump the battery. After giving all my information I was told that they could not come to Nampa it was too far away.  They sent me back roadside assistance, and I went through the same process and right before they were going to transfer me to a company the call dropped.  I called again and got through and right before the woman was going to call a company she said it would be 90 minutes before they would arrive at our house.  I was astounded.  I said, never mind, I would figure it out.  And so I did.  I went to the garage, found the jumper cables and jumped the car. I should have done that to start with!

Then I headed to Boise to see Doug.  On the way I gave him a call and told him I was coming.  He asked me if I had gotten his message.  I told him I had not heard a call come in.  He said the doctor had been in to see him. Last night I had asked him to please ask the doctor why he thinks his ankles are swelling.  They had started swelling about 2.5 weeks ago.  I kept asking the nurses and they kept telling me this sometimes happens, but I told them he had swelling when he was very sick but that the edema had resolved weeks ago.  Well, the doctor must have been concerned because he had another doctor come over from St. Luke's for a consult.  This doctor found a blood clot and they have now started Doug on blood thinners.  Thank heavens we kept pushing to have the doctor look at his ankle. Clots can be so dangerous.  Doug said that he could still come home tomorrow.  And so I hope everything will be OK.

And so we pray:

O Lord our Protector and our Guide, be with Doug as he prepares to come home. Watch over him and guard him from all sickness.  Be with his doctors and nurses as they care for him. Make clear the path for the care providers that will come into our home so that Doug may continue to heal and regain his mobility. Take away our fear as we approach the next steps of his healing and fill us with joy with Doug's homecoming. In your name we ask it. Amen

April 3, 2017: Day +133

Doug is counting down.  Two nights left including tonight at the hospital.  The hospital has a count down too.  They have many items on their list to assure that Doug is ready to go home.  Today the pharmisist came in to meet with Doug and review his medications.  Most of his medications are different than the ones that he was taking when he went into the hospital.  The pharmasist will be calling in the prescriptions to a pharmacy in Nampa for us.  I still have lots of questions about his medications for his blood preassure and his heart rate.  His heart was in good shape when he went into the hospital.  Because of the stress on his heart from the coughing and difficulty breathing he had a heart attack.  No one ever told us about damage to his heart.  I am not sure if he still needs the medications he is taking.  His heart rate has been very low around 50 beats per minute. I think we will need to see a cardiologist once he gets home to get more clear answers.

I am beginning to bring Doug's things home each night and putting his things away.  It feels like I am slowly reintroducing him to our home.  I have had to rearrange many things so that our house is more accessible for him.  He is a little nervous now about coming home.  He is beginning to realize that things will not be the same as when he left.  We will have to have people in our home to help him with nursing, OT and PT.  Our home will not be our own.  We will be sharing it with people who are coming in and working with him.  This will be an adjustment.  My plan though is for us to be home alone for a few days before we introduce other care providers. That way I can know exactly what we need and we can adjust to life at home.

God of Possibilities, tonight as I pray, I am reminded of the song, "Draw the Circle Wide".  Over the past months we have had to learn to draw the circle wide.  We have learned that we cannot do this on our own. Sharing this journey has helped us to trust in the path before us.  We are reminded that we never walk alone.  Thank you so much for the gift of all who have stood side-by-side with us. As we move into the next leg of this journey help us to continue to draw the circle wide and invite others into our journey of healing and wholeness.  In your name we pray. Amen