June 13, 2018

Ok, well I haven't gotten any real test results back but I do know that the urine test had a lot of blood in it and not so much white blood cells.  So that indicates more of a problem than just an UTI so no antibiotics were ordered.  Daniel does have a history of kidney stones so we are assuming with the pain he was in, and isn't any more, he may have passed a kidney stone.  Poor guy.  I'm too afraid to ask, "what's next"?

I like the quote above. I can't tell you how many times I have told people, I just want to run away.  So we bought an RV, a Vixen which has become the fixen Vixen.  She loves to break down wherever we go.  It creates so much stress in both of us.  The last time we went across the highway to Bass Creek and it broke down again.  Damn it.  But we also had a nice time, except for my heartburn.  Stress comes out in so many forms.  I was ready to sell the Vixen on the spot.  I just want to go out to relax and not worry about getting a tow truck to get us back home.  We'll see what happens.  It's a cutie but most of my pictures of the Vixen are the different tow trucks carrying us home.  (Why do I always hear the song "Money, Money, Money....?)  

Thanks for reading.  Love you all.  

June 11. 2018

I do not like re-reading my posts and seeing all the misspelling and grammatical errors so maybe I just won't re-read them.   I don't know.  This is exactly why I have limited the audience, I picked people who won't really care and pick up on the message on the day's blog.  I do apologize, I should do better.  

Daniel told me the other day how tired he is.  Well, he should be, he didn't have any time to recover from surgery before we had to get things ready for the BB treatment.  The nurses were outstanding with all of this and have gone way overboard helping to pack everything up for the treatment and then turn around and unpack everything after the treatment.  Things are starting to settle down a bit.  Just in time for Daniel's stomach to start acting up again.  

I think he has at least a UTI if not a kidney or bladder infection.  We'll find out today when the hospice nurse Cindy comes by to check on Daniel and bring her test kit to figure out exactly what is going on.  He had two dilaudid, 3 dosages of morphine, 10 mg of THC, and some methadone and was still in pain.  So something is happening.  We tried different positions, heat, ice, everything he asked for and nothing gave him any relief.  I am waiting to hear what Cindy has to say and go from there.  

This pain thing wears us all out.  I can't stand it.  We have so many drugs at our disposal but when they don't work it is so frustrating.  I haven't been able to text or call yet because they are all working on him this morning, the morning routine takes a long time and a lot of work each and every morning just to get him ready for the day.  I'm so grateful for all of the caregivers.  We are truly blessed.  

So I will let you know when I know what is going on.  I want to go in but I'm told I just run in too much and need to settle down and just be home for awhile.  It's so hard to stay put.  I can't focus!  


Thanks for reading.  I love you all.  

May 29, 2018

It has certainly been a merry-go-round this past month with each day bringing new stresses our way and yet we are dealing with them one by one.  I will try to sum them up as I write this because each has its own teaching in it.  

Daniel has his cat Alexi, for about 10 years. I will have to find a picture of him to post, these 2 are amazing friends and get each other through some trying times.  What has been truly amazing is how much Alexi has endeared himself to most of the nurses.  He has snuggled himself into their hearts.  The poor 20 lb cat only has 5 beds in Daniel's apartment!  The nurses/caregivers keep making more beds for him.  He is very much a Garfield type of cat.  

Well, Alexi decided he was worried enough about Daniel to take on all of Daniel's symptoms of his ilius.  That cat would not eat, drink or poop for 2 weeks, 2 vet visits (which requires chasing said cat around the apartment to put him in the cage to haul his ass to the vet for check-up and listen to him pretend to be a mountain lion.  He roared and roared and broke 2 nails clawing at the cage trying to get out!  He HATES the vet!)  Plus  $400 later after 2 visits of which they found nothing wrong.  They gave us medication for hairball treatment and antibiotics just in case something was wrong.  He was just worried about his dad, Daniel.  Scared me, there was no way I was going to tell Daniel his cat had cancer or was going to die, I just couldn't do that to Daniel.  And thank goodness I didn't have to do that.  

Alexi is feeling just fine now and sleeping on Daniel's bed with him as much as possible.  Phew!!!!

Daniel and Alexi a few years back

Hey I did it!  I'm always happy when I can put a picture in and get back to typing in the Blog.  Yay for me.  

Mom is doing very well with her total knee replacement at age 91.  My brother, John and my sister-in-law, Jackie are the best care givers ever and have relieved my concern and guilt of not being there to do my part.  They have spoiled mom rotten and her healing has truly been remarkable.  My brother John has been working from my mom's house and Jackie works at her school then makes dinner and brings it over to mom and John.  I'm beginning to think when I have my nervous break down, I am headed to Indiana to my brother's house.  I'm hoping they will treat me just as well.  

They have also proven to me that mom lives in a lonely state of mind.  Most of her friends are gone, either by death, distance, or by their minds.  It's so sad.  Just by having that daily contact, knowing someone will be there has changed her attitude remarkably.  She is a very social being, and not having that social outlet any more can create a loneliness inside that can create a lot of sadness which eventually comes out as bitterness, rudeness and general nastiness.   Which is exactly what she doesn't want.  She wants attention and people to care for her.  It's contrary for sure. Not having a mother since she was 8, and really not having a mother at all, has made her a very needy woman.  But overall mom has done very well for herself.  

This blog is about Daniel and not about my deep dark secrets of family issues. 

On to our next issue.  Please feel free to stop reading, delete or whatever.  

Daniel started feeling his stomach acting up again.  This guy has eaten nothing but broth, chicken noodle soup, crackers, Nilla or Vanilla cookies for 6 months.   If he asks for a piece of cookie I give it to him, whatever he feels he can tolerate, I give it to him. (Still no request for Key Lime Pie). He went back to not eating.  This continued for about 2 weeks.  Through it all, when I would walk into the room he would smile and say, "Hi Mom".  Hi sweetness, how do you do this day in and day out?  How do you remain polite and pleasant?  How do you tolerate nurses arguing with you over bullshit?  How do you live?  How do you do it?  I simply don't know.  

We have surgery scheduled for May 17th and I'm getting very nervous if Daniel can handle this or not.  Maybe the first hospice group was right, maybe we shouldn't be doing this after all.  Worries creep in and sleep can't be found for me.  But the new hospice is right by my side.  The harpist is playing to Daniel's body's rhythms and giving him peace.  Daniel's personal massage therapist and the hospice energy healer are working on Daniel's body to get in sync the best they can.  It all seems to be calming his stomach in time for surgery.  

I get a call a couple of days before surgery to find out a nurse has reported he saw a bed bug on his arm.  Later that day it's confirmed Daniel's apartment has bed bugs.  His apartment complex has been fighting them in 2 or 3 apartments and I was thanking my lucky stars they hadn't gotten into Daniel's apartment.  He's the perfect candidate for bed bugs.   

It appears the night nurses, both of them, and 1 day nurse had experiences with bed bugs. had bites from them.  I'm thinking that caregivers went into infected apartments then came into Daniel's room, it only takes one bug to cause an infestation.  I think we hopped on it pretty fast and I really believe it was contained to our couch.  I haven't gotten any bites and neither have other nurses that I know of and, man, we have been looking.  

So, the day of surgery, I arrived at 4 AM to get Daniel ready for the ambulance, surgery went so well.  I love both Dr. Haller, the surgeon, and Dr. Morris the anesthesiologist.  They are a great team and have removed Daniel's trach granulation several times in the past and have this down pat.  Dr. Morris would not leave Daniel's side.  Once she came in she notice his new mustache, so did Dr. Haller, they both made him feel so special.  They haven't seen him in a year and they do thousands of surgeries and yet took the time to really make Daniel feel like he was a movie star.  Of course, we don't enter the hospice quietly.  We usually have quite an entourage and now being delivered by ambulance which I prefer to call Daniel's limo, makes quite the statement.  

I go into post op to suction Daniel, etc. and Dr. Morris was right there.  I think she realizes just how sick Daniel is, and it was her way of saying good bye without saying it.  I love her.  I will have to write to her.  Add that to my list.  

While we were busy in surgery, Daniel's apartment was being steam treated for bed bugs now referred to as BBs.  This is how the community at Eagle Watch works.  When someone needs something, we gather and get it done as soon as possible without complaint and just do it.  

His apartment was fully treated within 2 days, while we were gone his entire bedroom was done, and his couch was treated, wrapped in plastic and hauled out to be picked up and hauled off.  

No more BBs have been found.  However, I asked the owners of Eagle Watch, ASI they are based in St. Paul, MN to have professionals come in and do a thorough cleaning with 130 degree heat treatment.  Now, I have created more stress.  

Daniel will have to be out of his apartment for 24 hours, he has finally admitted he can't drive his wheelchair any more.  I knew this but I wasn't going to say anything.  So another ambulance (or rather, limo) is needed.  I really wanted him to come here but I live in Florence, and Daniel's dad, John, lives in Missoula, so he will go to his dad's this coming Friday morning.  I will take Alexi to my house.  That's going to be an experience, the mountain lion arrives in Florence, holy cow!

Hospice has rented a hospital bed (it's already at his dad's house), Medicaid Wavier came through with paying for the ambulance, so very helpful since I just spent over $600 on cleaning Daniel's apartment for the first treatment of BBs in Daniel's apartment.  Living on retirement isn't always a fun situation.  

It does take a village but in our case I feel like it takes a town, in fact Daniel and I make up some names for his town, Marksburg and/or Dansville.  Gotta find humor or you really do go crazy.  

Fall out effect of BBs.  Daniel never got a bite that I know of, but his bed is pretty much BB proof, they can't stick to his bed, thank goodness, again.  However, his 2 night nurses have not been so fortunate.  They both took them home with them.  One threw out a sleeper chair since he can't sleep in a regular bed, that was a cost of over $3,000.  The other one has truly suffered  a PTSD break down.  Hence I have had to do a night shift.  I feel so horrible for this man.  BBs get into you mental state of mind.  Even reading this I bet some of you have started itching.  It just happens.  This poor man has been become almost manic about it and it is breaking my heart.  I'm trying to get help for him and I'm not quite sure how to get the right help.  I have offered money to both of them and emotional support.  ASI has not been any support.  People just don't understand how important it is to support everyone in this situation.  They were working, doing their jobs and this situation arose.  They did nothing to deserve this.  

I am trying to help them but, I will admit, they may be taking their frustrations out on Daniel and that is not allowed, by me.  As long as I have breath in this old body I will not allow my son to be abused by anyone in any shape or form.  So, the mother bear appears and writes a harsh note with some positive spread through it, wasn't a teacher for 32 years with some crazy kids without learning some tricks.  Of course, as always, the good nurses took it to heart while the ones who needed the lessons just tossed it aside. Enters Mother Bear in person, up front and personal.  Example: When using a urinal with Daniel while he is lying in bed, there are some sharp edges on there, have you ever noticed that? If you haven't would you like to like down right here on the floor and let me show you how sharp they are?  How would you like me to scrap and pinch your penis?  Without an apology or any comment made at 4 AM?  And tell you to go back to sleep.  Oh, yeah, I'm stress and too bad you just have to take it because I'm stressed. Do you want to be treated like that?  Or would you prefer to need to pee, ask me to help you, and I just won't respond because I'm pissed at the world?  Well, lie right down here, and let me be your nurse.  

I think we are all on the same page now, and things seem to be working a lot better and smoother.  There are still a few ruffled feathers but I don't know how long Daniel has on this earth, none of us know how long we have.  I'll be damned if I will stand by and allow this behavior on a very sick person, let alone my son, be treated like this.  No matter what, we are a community and we will work as such.  I feel like I'm a teacher again.  Remember the rules, do onto others.....and yes, I'm gonna look you in the eye when it comes to Daniel.  The thing is Daniel doesn't tell me, I will see something on him or another nurse will tell me.  Grrrrr

Last night, I went in late to chat with Daniel and we had the best time just being us.  When we started discussing hard topics he got very serious.  He really loves his nurses.  He is afraid to confront some of their behavior because he said I don't trust that some of them wouldn't take away my computer and take my trach off.  I'm so vulnerable to all of them.   Now, my heart is broken into pieces.  Generally speaking we have fabulous nurses, but for that thought to even cross Daniel's mind is enough for me to really think about how he is being treated.  I will have to visit more at unexpected times and be checking in more and more.  

Can you imagine your child ever having that thought cross their mind?  Or anyone you love?  How does he greet me each and every time with "Hi mom, I love you".  

I hope, if nothing else this blog will give you pause to be thankful for the beautiful day, thankful for your gifts in life, and thankful you are not threaten daily with someone having enough power over you  to end your life.  

Thank you for reading.  

I love you all.  

Peace be with you.    

April 25, 2018

We are now with a new hospice group, Hospice of Missoula.  They seem very attentive and so sweet to Daniel.  They have interviewed Daniel so much to find out his interests and what gives him pleasure.  Their Chaplin is a Buddhist, their harpist is from the Drum Brothers so that is very interesting and made Daniel smile.  Daniel loves his current massage therapist, and they are open to hiring her so Daniel can continue with her but they also have a massage therapist who does Reiki and Reflexology, and Daniel is interested in that also.  They seem so loving and so caring.  Wow!  Isn't that what hospice is suppose to be?  

The "welcome team" even noticed my hands, the other hospice group never noticed anything about me.  My hands are so broken out, we tend to have this in my family.  At least they have stopped bleeding but they hurt so badly and I have tried everything on them.  Stress manifests in so many ways.  I used to lose weight, wish that still happened but no, now I retain weight like nobody's business.  And my hands breaks out with red rashes that itch like crazy.  Then they crack and bleed, then skin flakes and is so disgusting.  I'm embarrassed to shake hands with anyone.  I know my skin is "poking" them. 

I'm really not sure where Daniel "is" these days.  We have been spending so much time with the hospice issue.  One of our nurses is out with ACL surgery and one of our former nurses is back, YAY! We have been going through many transitions and not much time for personal talk.  We will have some time today, I hope.  

It's nice to have some diversions, however.  I know Daniel gets tired so easily.  He hasn't been wanting many visitors.  By that I mean, none, lately.  He just gets too exhausted from everything else going on. Hopefully, transitions will settle down now and he will have some more strength again.  

His stomach is acting up. I'm really not sure if it has ever settled down.  Still no key lime pie.  Not a good sign.  But he is still here so I'll take what I can get.  

I'm going to see my precious Ida today, she is 8 months old, going on 80 years old, "grandchild.  She is the daughter of one of Goddess Daughters and she makes me smile like no other.  She is this little old soul trapped in an 8 month body laughing at all of us.  I can be in the depth of despair and just watching her makes my heart sing.  There is a future out there.  There is hope and love. 

 I love both of my God-daughters, they both offer me hope for the future.  It's a slice of heaven to have them both back in my life. They are done with college and done with their twenties.  They have both explored the world and are so wise beyond their years, and I adore them.  I love the way they are so tender with Daniel, and with me.  Alyssa can lecture me on the law and what I need to be doing to protect Daniel, she even scares Kevin, LOL.   

I know so many of you are doing your own care giving, so many surgeries going on right now. I hope James and Tom are doing well.  My girlfriend group know as the Ski Team have our hands full taking care of others.  We are women who need to have a reunion soon.  Stay strong.   

I love you all.  

April 19, 2018

We will be serviced by Hospice of Missoula starting April 24 at 12:01 AM, Hallelujah!  For people in Missoula, their harpist is a member of the Drum Brothers, oh yeah.  Their spiritual guide, that's what they called him, is a Buddhist, double yeah.  The people who came to Daniel's were so loving and caring.  Just what we wanted.  

The original hospice group called yesterday morning and told me I had been told all the wrong information, that they would pay for Daniel's surgery.  It is for comfort, etc.  I am so over being lied to, medications not coming, the nurse not arriving when they said they would, etc. etc.  

I sure am hoping the new agency helps us more and gives Daniel a new and brighter outlook on death and dying.  He is still having some good days and I want to celebrate those days and not sedate him more, as has been suggested many times by the other hospice.  

Things are certainly looking up even though it evolves many changes once again, I think it will be much smother process than what we have experience.  

On another subject, my 91 year old mother just had a very successful surgery for a full knee replacement.  A huge shout out to my brother, John and his loving wife, Jackie for being right there by her side.  I simply can't go back right now but hopefully with a good hospice in place I will be able to help out in the future and give them a break.  They will need one.  Actually, I wish they could come here.  Some day......


Thank you for reading.  

I love you all.  

April 17, 2018

Wow oh Wow!  We had a meeting with Partnership in Hospice yesterday and it did not go well at all.  I need to provide you with some background first.  

Daniel's body has a reaction to the plastic in his body.  His body wants to reject all of it which makes sense. but creates a lot of havoc for him and his nurses.  He has a feeding tube (PEG tube) and he has a tracheotomy.  His body likes to build up granulation around all of the plastic parts and make the stomas (an artificial opening made into a hollow organ, especially one on the surface of the body leading to the gut or trachea.) very sore and sensitive.   The nurses clean these area twice a day to avoid any infection.  The PEG site is much easier to clean and get rid of the granulation with silver nitrate.  However the trach site takes a bit of surgery.  They sedate Daniel, and the doctor cuts out the granulation in his trachea.  They also replace the trach itself, too complicated to describe why but believe me it needs to be replaced.  All of this is considered "comfort care" and not a medical necessity. 

Hospice does not allow any invasive surgery or anything that would "save a person's life". Having the above surgery does not save Daniel's life.  So we had a meeting yesterday about the procedure.  I had canceled this procedure twice because Daniel was not stable enough to have it done.  His trach site is really hurting right now and he is requesting to have this surgery.  We usually do this procedure twice a year for the past several years.  The surgery is scheduled for May 17th so I gave a long notice to hospice so they could help me get him to the hospital, etc.  

Instead, they told us yesterday that Daniel would be released from hospice on May 16th, then have the surgery the next day, and may not be readmitted to hospice the 18th.  They have decided this is a life saving measure and will not be tolerated.   

Of course we were in shock, Daniel has so many life threatening issues.  Five years ago we were told he was hospice eligible without the ileus issues.  

Hospice takes over all the medications, the ordering of supplies, they change your pharmacy, it's incredible how they change your life.  So, this means, I am expected to change everything back and get Daniel covered by medicaid, medicare for the surgery.  They have certainly made my life hell.  

 I have heard only good things about hospice but this organization has caused a lot of upheaval in our lives, breaking confidences, telling lies to a nurse, really causing some major concerns.  

I guess my day today will be filled with calling the other hospice groups in our town and asking them if they will take Daniel as a client.  I think he would be a money maker for anyone who is willing to take him on but what do I know?

If any of you have any experience with hospice in Missoula will you please let me know you opinions and suggestions.  I am truly at a lost as to what to do now.   

Daniel's father, John, and his wife, Janice, happened to stop by in the middle of the meeting and were just as upset as I was.  Daniel is totally freaked out and wondering what all of this means to the care of his final stages of life.  It was a mess.  I'm crying, John's yelling, Daniel is being reasonable and finally after everyone left asked me to start looking for different hospice groups.  

Thank goodness Daniel has the sanity of the group.  I feel so unsupported, I even asked where is their compassion?  They told me the people in the room had compassion but they were apart of the team who made the decision.  I told them to hug their healthy kids.  Angry?  Yes, very.  Heartbroken?  Yes, very.  Lonely?  Very.  Confused?  Yes.  

I'm so thankful for the nurses Daniel has, they will group together and see us get through this time.  Mother bear, yes I am, I have to be.  

I love you all.  

Death as a Part of Life

April 11, 2018


The joke for the day

Death as a Part of Life

April 8, 2018

The difference a week makes, can be a wondrous adventure.  Daniel started eating some real food this week and he has been in less pain.  He is very content and basically very happy.  

Friends can change your life.  Daniel has several friends he has known for years.  Owen and Cory paid a visit to watch a very dumb movie with Daniel. The laughter and the comments coming from the bedroom made everyone's heart grow so large, it was contagious.  Daniel has been pretty happy ever since.  Owen's dad, Tom stopped by too.  Tom has been a big part of Daniel's younger life and provided so much support to us while Daniel and I were living together.  It was a flashback to the "good old days" and love was surrounding Daniel in every direction.  

Thursday night, was interesting, the power went out in Daniel's area of Missoula.  I have tried to provide all the back up supplies necessary for the nurses to be able to take care of Daniel.  We really need a generator in the apartment building but of course the company thinks it is way too expensive to provide.  I wonder if they would think that way if their beds lost power and flatten down to rest on the springs of the bed and there was no rotation system in place and they had no idea when power would be returned.  The lessons I would love to teach people who fight against funds for the handicapped people in America have my ire big time.  

Thankfully, when we purchased Daniel's new bed, I made sure he had a back up battery on it for times like this.  I have provided a multitude of flashlights, a big lantern, and a cap that has lights in it so you can give meds hands free.  

Well, our night time nurse truly freaked out when the power went out.  He couldn't find any of the flashlights, the lantern or the cap.  The battery operated suction machine had not been charged, the batteries for Daniel's ventilator had not been charged, the battery in his machine was charged so that was good.  Then we had a major problem with the oxygen.  It usually has a valve on the front so you can hook up the oxygen tubing to the big tank of liquid oxygen and you're good to go.  Of course, the valve had been removed, have no idea why.  Then the nurse didn't know how to fill the portable oxygen tanks.  Daniel was texting me, he was also texting another nurse.  The nurse on duty would not slow down to listen and would not stop to listen /read Daniel's lips as to what to do.  Daniel was using his text to speech, he was trying everything he knew to tell the nurse what to do.  Please remember he is doing this with 2 fingers that he can move, if the pad he uses as a mouse slips, he can't move it back in place.  He is so amazing, I mean truly amazing!

Now that it's over and all are safe, I want to make it clear I am not putting down the nurse on duty.  It's intense taking care of Daniel and when things like this occur, you lose your mind.  Common sense goes out the door, and you're so scared he's going to die if you don't get everything done quickly you simply forget your name.   Some people/nurses are much better in critical situations than others.  I have begged not to be his nurse because this would be me, running around not able to remember anything.  I'm not a trained nurse, I just play one at Eagle Watch. (There were some residents at Eagle Watch that I have known for years, about 2 or 3 years ago, they stopped me and asked, "Is it true that you are Daniel's mom?" When I confirmed, they started laughing so hard, and told me they thought I was a nurse and tried to be on good behavior around me!  Now I get to hear the dirty jokes too.  I love the residents at Eagle Watch, they have their own community and support one another.)

So things are great right now.  I even got a text from another long time friend, Molly.  We had just been talking about her to a nurse.  Daniel wanted to tell Molly stories.  Those two, I swear have either been brother and sister before, or husband and wife.  They would misbehave (we're talking 3-4 year olds) and we would put one in time-out, the other one would beg to get the time-out kid free.  Molly's mom and I talked our heads off about how to be kind to your friends, blah, blah, blah.  As soon as the time-out was over they would go right back to arguing or whatever they were doing.  It just was their way of communicating.  Daniel explained they had planned to buy a laundromat and would sell doughnuts while the people waited for their clothes to wash and dry.  Pretty creative kids!  Molly will be visiting this week.  

Friendship, nothing is better in life, to know you are loved and people do care about you.  Daniel says he feels love all around him.  It doesn't matter if you are there in person or I tell him Justin sends his love, Aunt Martha is thinking of you and sending her love, he feels it and gets it.  

Love is truly all there is and I send you all of my love.   

April 5, 2018

Daniel is feeling much better, at least he is back to talking, playing games on his computer so life is pretty good.  I guess we just need to get used to the roller coaster of life.  

We had a nurse call off for her shift and my immediate reaction is one of panic.  I do not like being the nurse on duty, I panic big time since Daniel has been so sick.  Our fantastic Rhonda, and wonder nurses, even the owner of the nursing business we use, filled in the 6 hour shift, it took 4 people but everyone pulled together and saved my butt. Or rather saved Daniel's butt.  He needs nurses at this point.  

In Montana we have a law in place that states in home health care, if a nurse can't fill her shift and there are no other nurses available then a parent or a guardian have to fill in the shift.  We have a desperate need for home health care nurses out here.  So I understand why they had to implement the law but.....

Today will be super short I have a list of things to get done however I had to share the good news.  

I love you all.  

April 3, 2018

I haven't written in awhile because Daniel has been in a lot of pain lately.  The blockage is playing games with his body once again. and he has been sleeping a lot and not eating too much.  Soup and broth seems to be his diet these days.  

He certainly knows his body and what he needs to do and not do.  I keep coming up with ideas to cook for him like a small sweet potato casserole, I know he loves sweet potatoes but I think they would be hard on his digestive system right now.  

I know he loves key lime pie, I wanted to fix that for St. Patrick's Day, we had even decided on a ginger crisp crust, I'm feeling really hungry all of a sudden.   I ordered actual key lime juice, thank you Amazon (even though I hate you work ethics).  We were both excited about that one but he wasn't really feeling well enough for that one to be made either.  

I need to really listen to him a bit closer.  He had come up with the idea of peanut butter cookies when we realized we had an abundance of peanut butter, same thing, when we offer to make them, not the right time.  

Daniel loves cooking and eating fresh made anything.  Since he can no longer cook himself or even help with the process, he loves the smell of something baking.  All of his denials are setting off alarm bells in my heart that things are going downhill fast.  I promised I would not ask him to stay here longer than he could, but wow, I want to, I want to beg him to stay another life time, another year, another month..... 

My major issue is that I like him, I really do like him.  Not only do I love him, but I like his friendship.  I like to do things with and for him. I like his attitude (most of the time), I like the adult he turned out to be.  He's not an angry man and he could have chosen to be, he is grateful.  He's frustrated and uses the limited control his has in "strange" ways, mostly on his care givers.  However over all, I'm very happy to hang out with him.  

This is getting too long.  I have more to say but I will wait for another day.  

Love to you all.  

March 27, 2018

March 27, 2018

Here's the mom joke I sent Daniel today:  A photon arrives at the airport.  When the person working the desk asks if he has any bags to check he replies: "I don't have any, I'm traveling light!"

Daniel's response:  LOL A mom joke PLUS a Physics joke?  Hilarious!  

The part he doesn't know is that I'm stealing these from Kevin.  Kevin sends these silly groan jokes to his kids called Dad jokes.  I thought I should adapt them to mom jokes and send them to Daniel.  He is loving them.  If you hear any "groaners" please let me know because I'm already used up.  I'll have to search the internet.  

Daniel has the best attitude ever.  He still goes through periods of intense pain and does ask for pain meds but man, he endures a lot.  His esophagus and his intestines are basically collapsing.   The muscles are just not working well enough to help him digest his food.  Some days they work well and he is not in much pain, other days they play hell within him and give him excruciating pain.  Hospice taught me yesterday how to load a needle into a sub q IV and then inject into his arm to calm him, if his pain is really severe I can then inject as much meds as needed to quite the pain, it may quite more than the pain.  

Not sure I'm ready for this but Daniel is at peace with all of this, he has made his peace with death and lives one day at a time.  Talk about a Bodhisattva in our midst.  He is here to enlighten all of us about love and truly being present every single day.  He has been my teacher for years.  

Thank you for reading.     

Please feel free to share this if I have missed someone, the link to my blog is:  https://mindfulinmontana.blogspot.com 

I'm still trying to figure out how you can subscribe here so I don't have to keep emailing you in case you are not interested.  

Much love.  

March 27, 2018

This post is the first one I am going to publish.  It's late, I'm tired.  This blog is about love, and it's about grief.  I begged to be a mother.  One day, my deepest calling came true and a baby boy was literally handed to me, I was asked if I wanted him, my eyes were overflowing with tears, and I uttered, "yes".  

So began my journey of motherhood.  One I will always feel honored to have experienced, every single step.  Even the ones I definitely slipped and fell onto the ground, but I adored each as a blessing of the great universe and the sensation of the universal motherhood.  I realize all this may sound full of sappy, hippy, language but my heart is so open and yet so very tender while I sit on the brink of not being a mother any second, any day, any month.  I have at least earned the right to be sappy.  

 It began around 5 AM on October 22, 1986 when Shawndra called me and told me it was time to meet her at the hospital.  I was so nervous, was this really going to work?  What if Shawndra changed her mind?  What if something happened and the birth father wouldn't sign over custody, what if....?  Shawndra was, and still is, an incredibly strong woman who keeps her word and knows when her mind is made up.  Yes, we are still in contact and we have a bond, like no other.  We know we love each other forever.  She is the person who gave me the gift of motherhood.  She is Daniel's birth mother and she made many selfless sacrifices to give her son the best possible life she could give him.  I swore to her I would do the same.  Shawndra's mother held Daniel first, then handed Daniel to Shawndra, Shawndra handed Daniel to me.  It may have been the most emotional birthing room in Community Hospital but to me it was the most beautiful day ever.  My faithful Bonner friends were bringing champagne to celebrate in the nursery!  Daniel was welcomed into the world first by 3 loving women then into the world of loving friendship.  He was so loved from the very first day.    

Daniel arrived home to his adoring Goddess-sisters, Briana and Alyssa.  They are each 3 years apart, including Daniel, so Briana was 6, Alyssa 3 when The Boy arrived, that was pretty exciting and the girls had to join in on the mothering, more loving upon loving from the girls and our great friends, Daniel's God parents Lesley Morrow and Rex Young.  

Things change in life, as I studied Buddhism and continue to do so, one thing I have learned is Change is all there is.   When doors seem to slam shut, new ones usually open up and all for the better in the end.  

I'm giving you some background for key players so in future episodes you can keep up the characters.  

Daniel was diagnosed at age 7 with Duchenne's Muscular Dystrophy and we were told he would not live past 15 years of age.  He is now 31 years old and is on Hospice since December 25. 2017.

My heart is splitting into pieces.