Thursday, February 9, 2017

Dying a good death.....

Today I listened to Dr. Haider Warraich share on an NPR podcast, about the ways that the medical community have changed the dying process. As I drove along, listening, I felt back in my element.
This is me, this is my passion, helping people to have a good death. These are the things that speak to my heart. How to let go of those we love so much, to leave us on their own terms, surrounded by love and care and comfort. This kind doctor shared his heart... he mentioned that he doesn't wear a lab coat because he doesn't want to be known as an "other." He wants to be part of, an equal, we are all just people. I have never worn scrubs to see clients...I wear my regular clothes. I have wanted to just be a friendly and supportive face coming through the door....not a reminder of their need for care, or help, or their disease.  Its not typical protocol to wear street clothes and I was so happy to hear that he does this too and for very similar reasons.

I loved his humanity. If you listen you will know exactly what I am talking about. He is a humble young man (29 years old!!!!) with such a kind heart.

Our world feels surreal right now. So much conflict, anger, distrust, and fear. I dont know what to make of it all to be honest. Listening to this today grounded me. Brought me back to my world. I realized Ive felt lost this week. What can we believe? I told a friend, its another thing that is unsettled in my life, that I dont have the answers for, that I have to trust and believe that there is a plan, and that the set of human and spiritual checks and balances are in full working order and that God can handle all of this. I know that that might sound like a cop-out to some, but its all I have. I can't fix what ails the world, I can't fix what ails my girl, I can't even quit eating chocolate even when I try my absolute hardest.

The only sphere of control that I have is the one I am standing smack in the middle of. What will my responses be? How will I find ways to continue to love unconditionally? Can I, will I, choose to abide in the power of my God each moment of the day? Or will I barrel off in my own direction, thinking that my best thinking will fix and cure.

One thing that is beautiful to behold is humility. I want to be humble. I want to not just talk about relying on God, but really *rest* in His power. In every manner of my being. My marriage, my girl, my other children, this crazy world we are living in where everyone seems to be rising up and fighting for what they think is right and best.

"Abide in Me, and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, neither can you, unless you abide in Me." John 15:4

God, give me your heart for each person I encounter. Help me to not judge their motives or their actions. I am only seeing a glimpse. Purify my heart with your spirit that I can be a light in this dark world. Amen.

Love to all.....

Tuesday, January 24, 2017

Lets be light

I usually stay away from political posts, because I'm really not very good at them. I have my opinions but I would imagine that they are universal. Kindness, love one another, be respectful, every one deserves to be treated like a worthwhile human being and those who dont understand their own worth yet and behave inappropriately, well those ones, while definitely a challenge, well, I still believe that to be true to my own heart and my own belief system, I need to *see* them and be kind and generous in spirit with them. 
Today, this week, this beginning month of our new year, 2017 is shockingly filled with so much hate. Even the "good guys" are spewing out venom. It feels like everyone is so mad and ready to fight. Women are angry and fighting against one another, some people and groups are out there hoping that heroin addicts can be charged a bill if EMS has to come out to save them during an overdose. Some are hoping that if they can't pass a clean drug test they will lose all their services.
 It makes me think of during the Bible days...."Stone them, stone them, stone them!!" Mary Magdalene...standing surrounded by her "community," judging her, deciding her fate, wanting to stone her for her "sin." Her sin, which she did not participate in alone by the way. And Jesus coming and covering her in His love and acceptance and protection and forgiveness, and encouraging the stone throwers, "You who are without sin, you can be the one to throw the first stone." He began to infuse her with life with His gentle love, kindness, and grace. His love changed her heart, healed her wounds, and gave her her life back. 
Now I am not Jesus, or anywhere close....but there is something here for all of us to pay attention to. Kindness wins! Every single time. Anger, shaming, violence, touching one without permission (aka: pussy grabbing) blaming, bullying, forcing, pushing, all cause harm. This past week has proven that we ALL are capable of harming one another.
We, as the most powerful nation in the world were left with two very inadequate choices to be our country's leader. That does not take away our own personal responsibility to behave appropriately to our own consciences. Who are we? What is important to us? How can we work toward change and furthering a peaceful world where everyone's spiritual, physical, and emotional needs are being met. One person at the top does not change who I am or how I live my life. I still get to choose how I will treat my fellow human beings. I know that I know that I know that we can catch more flies with honey, we can be a vessel of healing and life if we walk truly to our own selves and seek wisdom from a power greater than ourselves....for me that would be God. I know that love and kindness heal scars and I know that I can share those freely with anyone I encounter, no matter what other holy hell is playing out around me. And I know that you can too. So lets do it. Lets be light. 
Love to all.....deep breath. 

Wednesday, January 4, 2017

What is real?

One of the many things I have learned from working with people with Alzheimer's disease, is that our perceptions of our lives are real to each of us. When I work with someone with Alzheimer's I am called to enter into their reality, pull up a chair and join them there and listen to their stories, ask questions, comment, engage....not correct them, nor try to convince them of the truth, not "set them straight." I get to just be with them and allow the process to unfold. Sometimes they have moments of clarity and they realize, "I was somewhere else wasn't I?" I can assure them its ok, it was a nice place to visit and maybe we will visit there again. Its ok to just be present with them. This process and my work with these precious people has probably been one of my greatest teachers about calming the heck down and letting situations play out as they will. Being present to be a support, a facilitator, but not a construction foreman.

Our fears and pain are all relative. Recently a co-worker told me she had a lot on her plate and couldn't help out with a client because her 17 year old cat died last week and her husband has the flu. I had to be quiet for a minute, I had to choose to not compare our journeys, not judge, not roll my eyes, I had to choose to say, "Ok, I understand." For her, her reality was that she was handling all she could manage. Its not mine to decide whose struggles are worthy of real care and whose are silly. Because, I am just petty enough that I can go there.

 I have always been very rooted in reality. The cold hard truth. Even as a young child I was not good at pretend play. I was not a fun pretend play mom. We didn't present Santa or the Easter Bunny as real, they always knew I was the tooth fairy, I feel guilty to this day that my kids never experienced the mischievous antics of the Elf on the Shelf. (I recently saw a FB picture of the elf dressed in red, saying, "Seriously, this asshole is back again?!" My guilt mysteriously evaporated! lol)  For the record we didn't banish these things either, but they knew they were pretend. Life has always been serious business, tumultuous, and I needed to know what was real and where I stood in the big picture.

So in my early years as a caregiver I really struggled with the "pretend" world my clients often lived in. I struggled with "lying" to them. I had to work at learning how to say, "Oh your husband is out at work, but he will be back soon." Knowing full well that her husband had been dead for the past 8 years. The greatest gift I can give my client who thinks the President of the United States is coming for an afternoon visit, is to join her in her reality for that moment. To be in the moment with her. "Well gosh if HE is coming over, lets make sure your hair is brushed and lets paint your nails with that shimmery pink polish that you love!" Soon that idea will drift away and there will be something new to focus on, but her hair and nails will be done.

I find myself often wondering what is real in my own life right now. Is my girl really as sick as I feel she is? Am I just catastrophizing? Maybe I am crazy! Is this really happening? Is her journey just always going to be hard? What am I really seeing right now? What is the truth in all of this? Is there sobriety? Is there not? What is my part? Do I have a part....I think my part is to be quiet most of the time, to be as present with her as much as she needs or wants me to be, and to help her through the mechanics of the parts that she can't manage on her own. To not judge her efforts and to just let them be.

I will say, I am only mildly successful most of the time. I have begun thinking of her like my clients whose reality I need to enter into with them. I can hold space for her.

"When you hold space for someone, you bring your entire presence to them. You walk along with them without judgement, sharing their journey to an unknown destination. Yet, you're completely willing to end up wherever they need to go. You give your heart, let go of control, and offer unconditional support." From The Sweetness of Holding Space for Another....a Huffington Post blog post.

I recently spoke with a mom whose child has some significant mental health struggles. She explained that to have this young person follow through on chores, they have to walk along side and remind and prod and encourage....." wipe that far corner down, pick up all of the wrappers and put them in the garbage, ok pillow cases on the pillows." More than 2 directions and this young person gets lost and nothing gets done. Friends tell her it shouldn't be that way....."No it shouldn't, but it IS." I could tell a million stories when I have been told "it shouldn't be this way."

"Yeah, I know that." LOL I know better than anyone how it should be. How I would like it to be.

Thank God for the other mom's who understand that the reality "is what it is." Who come into my reality with me and can sit for awhile there and not judge if I am enabling by providing a safe drug free place for my sick child to live. Who hold space for me. They don't tell me I am doing it right or wrong, they just be with me.

Maybe you are wondering how anything changes, or gets accomplished with all of this "being" with one another. lol Things naturally have a way of playing out. Sometimes for the better, sometimes in ways we wish they hadn't. We are fluid beings... always moving in some form. Sometimes in the quiet times, our brains can receive the messages our spirits have been trying to convey but we have been too busy to listen. Its amazing when I stop trying to steer the journey, when I take my hands off the wheel, how things change. Its my fear that pushes me to hang on with white knuckles. Living in a place of trust in God is my sustenance. Trusting in His direction, His power, His direction. Its not all up to me.

I used to think that once the drugs were gone, then she could really begin to work on getting healthy. That she would be bright and shiny and able to get a job, able to go out into the world and be ok. That is not our reality at this point. Its not her reality...and as sad as it is for me, it is even more so, a million times more so, for her. I keep saying to myself (not out-loud lol) "just because something is hard does not mean its wrong."

So I choose to embrace our reality. Most days.

In the spirit of honesty....I will share this. Recently my girl balked at some paperwork requirement to hopefully get her some services in place. I replied to her sass with, "Well, you can always live under a bridge."

I regretted it the moment it came out of my mouth. It made her mad. Hurt her feelings. I felt ashamed of myself. Cruel. We worked our way through it. I will never be able to do this journey perfectly. Ever ever ever. I will make mistakes and so will she. And hopefully we will be able to extend grace and forgiveness to one another during those times. Hopefully we will have people around us who hold space for us, who pray for us, who walk with us...and allow us to do those things for them.

God bless us all.....please.

Thursday, December 29, 2016

Ive missed being here.....

I have really missed being here. I have started several posts that are tucked away in my drafts folder...I will get back to them eventually, but for today I just wanted to check in. I have an unexpected day at home and I have several things I want to accomplish, but checking in here was at the top of the list.

I hope the holiday was good for all of you. It is such a challenging time for so many.  So many expectations and hopes for "just this once, can we all hold it together?!" At the end of the day, the dad said, "This was the most "normal" holiday we have had in a long long time." He was thrilled, but I wanted more. That seems to be my nemesis. I always want more, better, always striving for perfection, the best that everything can be. Total abstinence, total sobriety, total sanity, accountability, brutal naked honesty...I set the bar way up here in the stratosphere and I only manage to discourage everyone. I have to work so hard at accepting what *is,* as enough for today. Remembering that we are in a process. That our lives are a process of good days and bad days and how we will navigate each.

I am coming to the conclusion that for some long term, hard core addicts, total abstinent sobriety is a long term process and may never actually be attainable. Things here are better though. I dont live feeling that death is imminent. I am accepting things as "good enough." Progress...and I am learning how to be content there for today. I have been given the most beautiful and bizarre life filled with vibrant imperfect people. And they have been given me.....vibrant, imperfect, wired a little tightly, a little too intense, impatient, pushing for change all the time, craving connection, and always always always their fiercest advocate... Together we make up this big "mess" of a family!

We just finished turning in everything for the SSI process. That whole experience almost killed me. I can only imagine what it felt like to my girl. Filling out numerous packets for all different entities, documenting over and over again all of your most private and humilitating ways that you are not ok,  needing to outline in big black sharpie all of your flaws to convince a stranger that "Yes it is true, I am unable to manage my own care." It was demoralizing, painful to watch. Once again, all I can think is that there has to be a better way to reach out and help people. A way that lets them hang on  to whatever dignity they can manage to hold in their trembling hands.

Molly is pregnant, and now has a fiancee. : ) Such a sweet couple. He proposed Christmas Eve at his  parents house. We all were there together, such a wonderful event, such a wonderful family. Down to earth, real, comfortable.....I just love them.  For Christmas Molly, and lets see what can I call my future son in law..."Grant." That is good. Anyway, Molly and Grant gave his mom and myself gift cards for a pedicure, massage and coffee that we can go to together, for a mom bonding day. I am so looking forward to it.

It has been suggested by my quiet Little One's dr. that she be evaluated for Aspergers. She was livid and now feels that her dr's "intelligence" is in question. She does have many characteristics...and I think the only positive in confirming or eliminating it is that it will explain a lot of who she is and how she does things and what her needs are and how to meet them....and most of all that its all ok! She agreed to the assessment as part of the process of elimination. To "prove its not true." She is such a sweet unique girl who brings us so much joy with all of her interesting interests. There is a big part of me that feels like, "So what."

The one positive with having active addiction in your life for so many years is that everything else pales in comparison. Tattoos....who cares. Pregnant before getting married....we've got this. Autism....big deal! Long me a minute to breathe. Its pretty hard to rattle me anymore.

I read a great book called On Living by Kerry Egan, who is a Hospice chaplain. She was given a medication during her first child's birth that caused a mental break that it took months for her to recover from. She talks about that time, but also her work with the dying. I just loved all of her insights and her realnesss. My current caseload of clients is one very elderly woman who is an absolute joy, and 3 youngish paralyzed people. I love my Hospice work but currently my schedule is too full to add anyone else. After reading this book, I have been wondering what it would take to become a chaplain. It would be similar to what I do now, minus the heavy lifting and personal care. I think I would love it. I mentioned it to The Dad and bless his heart, he said, "I think if you want to go back to school, you should." I feel so old, and where will I get the time and the money? But I am thinking about it.

Ok, Im off to put away all of my clothes that have been piled on my wicker rocking chair in my bedroom for MONTHS!! There, a true confession so you can all know that you are probably holding real life together pretty well in comparison.

Love to all and thank you to those who have reached out privately. That has meant so much. My break from Facebook and blogging and most online life was really needed and so refreshing.

Always praying for us all....

Sunday, November 27, 2016

Im finally in the club!!

These two sweet things.......

Are bringing me this special little someone in July and turning me into a g-ma!
This feels so joyful and like something so very very good is happening in our family. These two are such neat people and will be such wonderful parents. Any of you who have shared this journey with me, who have been my co-travelers as we have navigated so much uncertainty and fear and hurt together, know what I am saying. This is just good. Happy, normal, life going on, and we are blessed.  

Hoping that Thanksgiving was peaceful for all....
I am savoring my down time and trying to protect it and keep it simple. 
Praying for us all.....

Sunday, November 20, 2016

Solitude vs. Isolation

I am pulling back these days. I have never been in this place before and I can only think that it is a tribute to the emotional health that I have been able to piece together through the years. I am a "never give up," "we don't quit," "I will forge on ahead even if it kills me," type of person.

However these days I just don't have it in me and I am finding that it's really very comforting, quite lovely actually, to step back and let others take over, and care for me. I don't have to manage and be in charge or be participating in something that is useful every single moment of every single day.

Let me tell you that I am a doer. Doers, at least this is true of me, are afraid of being let down, so they do everything themselves. I should just speak for myself really, but I have a feeling, I might not be the only one and at the very least my true confession will let anyone else know they aren't alone. It is a little vestige of fear and control that I have not been able to let go of....and it all looked so nice. Lol I was the hero, the one who could do it all, who everyone could count on....until I wasn't. The problem with this is that we, I, rob other's of their chance to serve, to feel good for helping, to feel like they are a necessary part of something. It put me on top and you beneath. My need for this sort of affirmation has been so all encompassing that I have not been able to scoot over and make room for anyone else to be the hero, the shining star, the one that is needed.

The dad, bless his heart, has always just stepped aside and allowed me the freedom to pursue whatever I wanted, to fill this deep chasm of need that I have been compelled to fill...he was content for the most part to let me bull doze around doing a million things, while he played board games with the kids. My guess is that he was wiping his brow in relief that I knew enough to not seek all of that positive affirmation from him. My analytical, problem solver, linear thinker of a husband would have stared back at me, wide eyed, and wondered where to begin.

What me stepping back and acknowledging that I can't do it all, that I NEED help, that I NEED my family to rally around me for once, that I don't have the answers that we need....that maybe no one does and we just need to keep on moving forward doing the best we can....what this has given to me is a chance to rest and a chance for those I love to rise to the occasion. And they have. A hug here and there, a foot rub, a TV show chosen to share with me because they think I will like it (I NEVER watch TV and it's a source of pride with me that I do more useful things than zone out watching TV... I can really be awful,) a text saying that they love me, help around the house, help with all the driving we do, help with cooking and cleaning, taking over some of my responsibilities so that I can just be.

I have stepped away from some volunteer positions for a minute, I left Facebook for the holidays....a friend once called me "The Mayor of FB land." Not funny. I feel the need to focus on the here and now, the concrete of my daily life, be present in today with those closest to me. I'm keeping our holidays simple. They are an incredibly challenging time for me. I knew that watching everyone's "perfect" holiday FB moments played out over my iPad screen would be too painful this year, so I walked away until after the new year.

Not to mention all of the election awfulness going back and forth. For the record, I didn't vote for either of our top candidates so I knew that my "by default" pick wasn't going to win....but I couldn't in good conscience in all of my glorious freedom vote for either one. So for today I feel that we all need to live by being true to who we are, in love and kindness with one another, and let's see how things play out. I know.....simplistic. But it's all I have right now. If we all conduct ourselves in love and care for our fellow children of God, how can we go wrong?

So if I'm not around for awhile, you will know that I am just resting. Trying to take it slow. Trying to get through the holidays with some joy and a semblance of sanity. I am reachable through email Thank you to those of you who have reached out and checked in. That has meant so much to me.

Bless us all. May each of you, my readers and friends, find your way to peace and good will toward all men. Much love to all.....