The Turning Point

It was Wednesday yesterday.
Mom day.

We made the walk from her room
across the campus to the new cafe.
As always, we moved slowly.

Very slowly.

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The day was warm and breezy,
sun shining, sky blue.
And the view is delightful.

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Well, this view is delightful.
Mountain profile, green trees, red tile roofs.

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This one is a bit more sobering.
It is a retirement community, after all.
And there were several old children,
visiting older parents this day.

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My mom has had a rough month.
A bad, bad cold,
followed by a nasty case of shingles,
all of that taking its toll on her,
physically and mentally.

She is not eating much these days –
barely made it through half a hot dog,
one of her favorite lunches.

And the Diet Coke cup seemed to
freak her out this week.
She couldn’t understand why her 
hands were wet whenever she
held her sweating cup.

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But she smiled sweetly for the camera,
loving my company,
enjoying the day.

Making conversation is harder and harder to do.
She starts,
and I try to fill in the blanks,
but I can no longer guess
where she is heading.
There were a few moments
of remembering her childhood,
and a few wistful wishes
for more traveling.

But most of it was frustrating
for both of us.

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We sat there for a good thirty minutes
after she had given up on eating anything,
just breathing together,
enjoying the warm sun
and the blue sky.
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This last picture shows a weakness of my new camera.
It sometimes doesn’t know quite where to focus.

The woman in the background is crystal clear.
My mama?
Fuzzy, indefinite.

A perfect representation
of who and where she is right now.

Walking back to her room, I got a little ahead of her.
This is easy to do, as my stride is long
and even with an injured foot,
I walk a great deal faster than she.

So she said this:

“You may be older than I am, but you sure do move quicker.”

I was stunned for a minute, but came back quickly:

“I’m not older than you, Mom. How can I be? 
I’m your daughter.”

YOU ARE?
I didn’t know that!
Are you sure?

You didn’t live in our house, did you?”

“Yes, Mom. I lived in your house for twenty years.
And then I got married.”

Tears began to brim, but I cut them off.
She was so deeply confused,
and she did not need my grief to intrude
on her own.

My name she still knows.
My closeness to her she also knows.
Our blood relationship?

She no longer has a clue.

And I am bereft.

 

 

 

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Comments

  1. Oh, Diana. Just sitting here with you. No words. But a lot of love for you. I’m here.

  2. How I ache now to wrap my arms around you
    tears streaking my cheeks
    to breathe the same air with you
    as you did yesterday with her
    to offer no words of wisdom, no
    deeper than that
    to just be
    and share the burden
    and perhaps not speak at all
    in the presence of the One Who will always know who you are

    • Thank you, Karin – I’ll take that as a virtual hug. And I’m grateful for your presence in the midst of this time of lament.

  3. Oh Diana!

  4. Oh Diana – I am so sad to here this news. It is indeed a turning point. But I just love the way you love your mom and give her the respect and dignity she desires. And how beautiful it is that since talking is so frustrating, you are willing to just sit with her, to be with her. It is so affirming to have others walk beside us when we can’t make sense of life, when we forget their own birthdays, their names, their roles, their age. I pray the Lord meets in these days of wandering with a sense of awe that can only come from him. You are your beautiful mom are in my prayers.
    Hugs to you,
    Kelly

  5. BarbaraP says:

    Tears streaming down my face and my heart reaches out to yours. I too am in that season…I know it well.

    • It seems many of us know this season all too well, Barbara. My heart goes out to you as we walk this journey with our moms.

  6. I was thinking about you earlier today, and wondering how you are. I had been reading Addie’s blog again, about when her oldest boy was little, and not eating. It was about doing a Mother’s Day donation for World Vision to honor our moms. And I thought of you, and Addie, the two bloggers I read and admire so much, and how much I honor y’all as moms. Mom to a parent, mom to a sick child, mom to a wandering young adult, whatever the circumstance, dear God, it is so very hard. All I can offer is another mom hand, reaching out and patting a shoulder and saying I am so sorry.

  7. Ro elliott says:

    Oh..oh…such a hard hard journey… I am glad you share a bit of it here… May Grace co it je to hold you tight!!!

  8. I’m sorry, Diane. That’s brutally tough.

  9. Diana – this post just made me cry. We buried my mother-in-law April 2 – passing after a long bout with Alzheimer’s. She no longer knew any of us, only cried for her father. It was so difficult. My father-in-law, also struggling with Alzheimer’s, is quickly digressing. I know the pain. So wish neither of us did. What amazed me in her last weeks was to realize that as she lost her memory, we each regained ours as we all shared of times past. The day after she passed, I was reading James & this Scripture brought me such comfort – “Blessed are those who persevere under trial, because when they have stood the test, they will receive the crown of life that God has promised to those who love him.” (James 1:12) A crown of life will circle their heads and their minds will be fully restored in His presence. May God bring you strength & courage & comfort as you continue to spend time with your mom. Praying for both you & your mom.

    • My sincere condolences, Joanne, on your MIL’s passing. Or should I say, release? It truly begins to feel that way at the end of this hard journey, doesn’t it? My MIL is further down the road than my mom – hasn’t known us for who we are to her for a long time now and sleeping more and more. She is 98, my mom is almost 93.

  10. My oh my you brought me back one year ago we waited day after day in the nursing home. Even Alzheimer’s doesn’t forget love, you shared that…she knew that. And your words and photo brought another memory of the cameras wisdom. My mother went Home, and my last attempt to take a picture of her home resulted in the words popping up on my camera screen: Memory Full. No more memories to make… no empty space, her life was full. Thank you. I pray you, all of you, are wrapped in His peace.

  11. Diana I’m walking the beginnings of this road with my mother and don’t know what to make of it. It’s devastating and so…so…hard. I don’t have many words to offer just, a heavy sigh in solidarity with your struggle and the assurance of my prayers.

    • It’s a tough, tough road, Lisha – and I’m so sorry you find yourself walking it. I’ve got a lot of posts around about it all – there’s a page at the top marked “My Journey with Mom” that has about a dozen or so and there are 4-5 over at ADS, too. You might find it helpful, especially those early ones, as you start down this narrow, winding way. Thanks so much for your sighs and prayers.

  12. Losing her while still with her…you recreated this so effectively, I feel the punch, the ache, the feeling she is drifting away, out of reach. I’m so sorry, Diana, that as you continue to show up, week after week, she will continue to be unable to reach pieces of her memory. So hard. So, so hard.

  13. Pamela Green says:

    It is a heartbreak Diana

  14. Sandy Hay says:

    I have no other words than the ones written by these lovelies above. Your photos speak volumes :)

  15. Diana, The changes are the things I notice. I just got home from visiting my mother for 3 days. I had never seen her confused before. She was always the one with the memory of my old friends. She said she thought she remembered you. In fact, she did remember about the death of your youngest brother. But at other times she wasn’t present. It is hard. My father was far more confused, and my wife’s father was totally out of it. Just sitting with them is all we can do. I know how much you love your mother, and how this change must have hurt. We were so thrilled when it was obvious that our granddaughters recognized us and got excited when they knew they would see us. It’s a trade-off. But love is constant in all directions. Thank you for sharring.

    • Thanks for these comforting words, Newell! Yes, it is a trade-off, of sorts. When those little ones know who we are and welcome us, such a gift. I’m so sorry your mom is confused, but really glad you had some time to just be with her. That’s about all we can do at this point, and somehow, it must be enough.

  16. Dan McM says:

    Sigh….. It’s not easy.

    I went through something similar (though not nearly as intense) with my uncle that passed away last summer – we hadn’t been that close ever, but I was the one in the family that took care of his affairs and would visit a few times each year (no one lived near him). A couple times, he introduced me as his caretaker instead of his nephew, which happened to be during the one week that I spent the most time with him, trying to get him moved into a facility with better memory care.

    Here’s the thing: even though my uncle couldn’t describe who I was in relation to him, and even though he constantly referred to relationships incorrectly, he knew me…. He knew that I cared about him, and he was always glad to see me or talk to me on the phone, even down to the last time I called him (it was funny — he was hard of hearing and he didn’t have his teeth in quite right, so I couldn’t understand him and he couldn’t understand me, but it was obvious that he was glad to hear from me!)

    My point is: your mom may not be able to describe your relationship the way she used to, but she knows you, she knows you love her, and she loves you back. Even in the midst of the somewhat vacant expression in some of the pictures, it’s obvious that she’s glad that you’re there.

    Things will never be the same as they were, but you can still try to enjoy the time you have remaining with her.

    Blessings to you and your mom, Diana!

    • These are such good, good words, Dan. Thank you for them. And I know that she loves me – she makes that very clear. It was just a shock yesterday to see her lose the thread of how we’re bound together. Always, she has introduced me (over and over and over again!!) to everyone we walk by as ‘my daughter, Diana.’ But now, that piece is slipping away. And there will be more to come. As I mentioned on another comment, my MIL is further down this road. She cannot name us, but she still lights up when she sees us, especially my husband. So something remains, even at the late stage she occupies. (Your description of phone conversations sounds a whole lot like mine with mom!!)

  17. Oh, Diana. My heart hurts for you. I wish I had words of comfort.
    Thank you for sharing.

  18. So much love to you, Diana.

  19. Thank you Diana for this very moving pre-Mothers Day post. What a tribute to your dear Mom, who very clearly loves you to bits….and thank you for honour that you give to her through your photos and words.
    Blessings to you both xxx

  20. Diana – in these thoughtful comments of your friends and readers I hope you find the comfort of ones who have walked this journey too – and the blessing of knowing that in your painful sharing you are instructing and shepherding us. Every day the words of Revelation become nearer and more shining. Thank you – and love -

  21. Oh I know this, I feel this…….she has a wonderful smile. Prayers for you Diana, I feel as if I was there sitting with you because that is what my best friend goes through everytime she sees her Mom…..SIGH. May the Lord be your strength……

    • Thank you so much, Lori. And I remember that your friend walks this road – an even more painful one because there is no rich history like I share with my mom. That’s gotta be doubly hard.

  22. Bereft, indeed. Sending love from Chicago.

    Fondly,
    Glenda

  23. I read this with deepest empathy. I survive these moments only by clinging to my hope in Jesus for a better (clearer) place. I like to think that the part of my loved one lost to Alzheimer’s is already in heaven.

    I might be able to advise re the focusing issue?

    • Thank you, Brandee. And I do see my mom – the mom I know and love – as already with the Lord in many ways. I’ve never had a focusing problem with my earlier SRL cameras, but I switched to a fancy point-and-shoot because I”m getting old and tired of lugging extra lenses around! This is a Sony with one lens that goes from 24 to 200 and most of the time, I love it. It gets great color in really low light and has a video component, too. But the focussing gets tired sometimes. I’m about to go to the camera store and have some further instruction, I think!!

  24. Patricia Spreng says:

    My heart is sad with you, Diana. Bereft is the best word for it. I really hate how that disease does most of the talking for her now. Hugging you with my prayers. Wish it could be in person.

    • Thanks for the company, Pat. I know you have been where I am and I hate this disease right along with you! Maybe we should both try to go to Laity in November? I could use one of your hugs.

      • Tears. Just tears. And so much love.

        All through this, though, I keep thinking how beautiful she is, especially in that pink hat and with those pink fingernails. And that smile.

        She created such beauty in you. And I’m pretty sure in the losing, you’re also finding. And that many times you see yourself sitting in her place. My heart aches for her, for you.

        • Sorry… this comment got misplaced…

        • Never misplaced, Sandy. Never. Thanks so much for your tears and your love. And yes, her beauty remains. Right on, I do see myself in this exact same boat someday – and to tell you the truth, it terrifies me. Not as much as it did a year ago, but it’s still there.

      • Oh, do, Pat! I’ll be your roomie!

        • I’m hoping to convince my husband to come – but it’s doubtful. Am I a terrible person for wanting a room to myself if I do make the trip? I’ve had to do a fair amount of travel by myself for work and I learned that those trips could be true retreats if I had private space – so that’s what I try for. And then I feel guilty. Sigh.

  25. Donna C says:

    Oh Diana… I am so very, very sorry.

  26. Sheila Dailie says:

    “Tears began to brim, but I cut them off.
    She was so deeply confused,
    and she did not need my grief to intrude
    on her own.”

    Diana, what a beautiful and loving heart you reveal here! You cut to the core that ALWAYS we want our mom to know us, even when she cannot care for us or love us as we want to be loved. At least if she KNOWS us….

    Prayers for you as you graciously sit and stroll and soak up sun with the one who gave birth and life to you. (I love that she still smiles for the camera & has her nails manicured!)

    • Thanks for your kind words, Sheila. And yes, there is an aide who does nails on the weekends – and she always has hers done. And I love that she smiles for the camera, too. I hope piece remains.

  27. O, Diana … I feel just raw reading this. My heart aches for you and your beautiful Mama. What tender words you write.

  28. Oh Diana. I am so very sorry. Such heartache. Please know I am praying -for you and your Mom and for my own aging parents as well. It is so difficult to watch.

  29. {{Diana}}

    I’ve walked in similar shoes where my own father lost memory of me and in the most horrendous moments…found me to be an attractive woman. Though our circumstances are very different, I know enough for this ache to be familiar. I’m praying for YOU, friend, because this transition stings the heart and it never quite goes away.

    You’ve painted a poetic, poignant, painful picture.

    xo

    • Oh, Robin! I cannot imagine how heartbreaking/shocking/unpleasant/saddening that must have been. And thank you for your prayers and for your kind words of affirmation.

  30. Oh, Diana….
    I hope our paths cross in town soon – I just want to give you a deep hug.
    You are in my prayers…..

  31. Nancy Gordon says:

    Diana,
    Lovely, heartrending post. Thank you for sharing this journey you are on with your mom. You’re both in my heart tonight.

  32. My heart is breaking for you Diana!

    • Thanks, friend. And mine for you, in the suddenness of your mom’s passing. I honestly don’t know which is worse – it’s all hard!

  33. Stunned with you. Ache with you.

    You are faithfully showing up. You are bearing witness to these days. You’re doing the knowing for both of you.

    I’ll sit quietly with you.

  34. Nothing much to add, only gratitude that you share this, teach with your love how to be.

  35. Just love … lots and lots of love and prayer.

  36. Tears here, dripping off my face. You are mentoring us all on the what unconditional love looks like Diana, its not a feeling but a commitment. And the sadness of our humanity, that sometimes our undoing is completely out of our control and so very disappointing to those who are watching. You wrote this beautifully. It captivated me.

    • Such kind words, Shelly. Thank you so much. And for sure, I am learning that there is not much that IS in our control in this life.

  37. oh, diana… i’m sitting here in tears and prayers.

    all my love,
    erika

  38. Beautiful and heartfelt. Thank you for sharing!

  39. Thank you, Diana.

  40. Heart breaking and beautiful, and brings back memories of my mom’s last days. Thank you for sharing this.

  41. Oh, I do wish I could give you a hug right now! Your words bring back memories of those visits when I was not recognized as my father’s daughter. One day I would be met with a distant but friendly greeting — he was always cordial, even with strangers — and the next, as I approached in uncertainty, his eyes would light up and he’d reach out with a hug and ask after the grandchildren. It was a time of painful shredding as he slowly dissembled, and I hated it.

    In contrast, yesterday my hubby and I spent the afternoon eating birthday cake with my 91-year-old aunt, whose failing body frustrates her, but whose mind is probably sharper than mine! If I were allowed to choose between the two conditions for my own future, I honestly don’t know which would be ‘the lesser of two evils’. There is truth in the adage that “growing old is not for wimps”.

    • AMEN, it is not for wimps, is it? Thanks for these stories, Carol, and thanks for the wished-for-hug, too. And I think ‘shredding’ is just the perfect word for all of it.

  42. Diana – it’s coming and expected, but it’s so shocking when it comes. Dementia is truly heart-breaking. The long goodbye is the hardest thing ever. I’m sorry, so sorry that you have to sit by and watch and fear. The Lord promises restoration and redemption for all of us and she will be radiant and welcome you with open arms and remembrance of every day, every moment of love you have shared. On that day, she will.

    • Thank you, Fran. I hang onto that. One small piece of Wednesday that didn’t make it into this post is this. She carries old gospel songs with her and they vary from week to week – this week’s was “When We All Get to Heaven.” So we said it together – “When we all get to heaven, what a day of rejoicing that will be! When we all see Jesus, we’ll sing and shout the victory.” THAT’s our hope and we both hang on for dear life.

  43. “The woman in the background is crystal clear.
    My mama?
    Fuzzy, indefinite.

    A perfect representation
    of who and where she is right now.”

    I can so empathize with where you are at this moment. Though I didn’t have the relationship with my mom that you do with yours the fuzzy and indefinite were hard to accept. I was the woman in the background, crystal clear, knowing I wouldn’t have the resolution and restoration I think I wanted.

    Hold on to those good things, to that sweet smile…

    Hugs to you in this heart wrenching season.

    • Thank you, Carol – I will do my best to hang onto whatever is left as we move down this road. I appreciate your words – and the virtual hugs, too.

  44. Diana, I reached this point with my mom, too, and it was the worst day of my life–worse than when she died. It was a Monday, March 1. She looked at my sister-in-law and me sitting side by side and asked, “Are you two sisters?” I must have gotten a horrified look on my face because Amy grabbed my hand and said, “We sure are!” And so we have been, ever since. Mom died less than 48 hours later.

    • I think it is worse than when they die physically, Megan – you’ve captured it. There are little deaths almost every time I see mom, but this one has been the hardest yet, I think. Sometime soon, she will not even know me – although who knows? Maybe that connection will survive. What a brilliant thing for your SIL to say – I’m so glad you are sisters still, dear Megan.

  45. so much here
    so many afflicted, affected
    broken and torn
    when I worked for the Alzheimer Society I had to be politically correct
    I had to put a positive spin on it all
    I couldn’t call it a living death
    or even “the long goodbye”
    but I lived it with my father, all of this
    and so many take this walk
    and it’s okay to be angry
    even rage
    against the enemy that steals what we try so hard to hold

    I’m just sad and tired
    that so many know this journey

    • So you come at this hard story from two distinct perspectives, don’t you, Karin? And yes, I think there is room for all kinds of anger. And I’m with you – the extent of this disease is just immense – and we’re not much closer to finding treatment/prevention today than we were 30 years ago. And these numbers will only go one direction . . . up.

  46. The greater length of this post reviewed what your followers know of your Wednesday routine. Yet your poetic words bring a freshness to the familiar, i. e. breathing together and enjoying sunshine and sky. But my heart lurched and my eyes stung as I read the last part of your post.

    My mother-in-law suffered from dementia and my own mother is beginning to show signs. How difficult it is to pretend that all is well when a person with Alzheimer’s or dementia cannot understand that all is NOT well.

    I am so, so sorry.

    • I worry about it becoming TOO familiar! I use this space like a journal sometimes, but I’m trying to do it judiciously and not overburden anyone. But this is my reality right now, a central focus. And that’s where I write – where I am. And Nancy, some patients do know they’re losing it – my mom has always known. We went to a neurologist at her insistence. My MIL, on the other hand, has been clueless all the way through. I can see that my mom is losing her ‘memory’ of this disease, however, and in some ways, that is a blessing.

      • No, a thousand times NO! The journey with your mom is NOT too familiar. Many of us are now impacted by this insidious disease, as older family members fall victim. Your insights and expressions of emotion are informative and therapeutic. Please keep sharing your heart on this topic!

  47. Diana, I’m packing to drive up to be with my sisters and my dad so we can be together on the first Mother’s Day since my mom passed away from Alzheimer’s in February. It’s weird because we had quit celebrating a few years ago as she didn’t understand any of it. I still feel the sting of her not knowing who I was – for awhile she knew we were “friends” who loved each other, but at the end we didn’t even have that. I know well the feeling of being bereft :( Being with someone who is literally losing their mind is tragic and unsettling. I am so sorry that you are having to go through this – and glad you are recognizing the need to lament. It helped me to realize that God was also lamenting for her!

    • Thanks so much, Gail. And I’m so sorry that you know this story so intimately. We’re also walking through it with my husband’s mom – and she no longer knows any of us. She smiles at us, but I don’t think there is any connection to what the relationship is. I used to think that she at least knew that we were important people in her life, but even that seems gone now. It’s a vicious disease. I hope you and your family find space to share good stories and rich memories this weekend.

  48. Diana,
    I am a new virtual friend via Laura Brown. Your words about your mom pierced my heart. My dad’s mother had Alzheimer’s. She did not know us, but would smile and show us a baby doll she had latched onto. She would sing the hymn, “I Love to Tell the Story,” but couldn’t tell us her name.
    I am praying that Jesus will hold you and your mother close in the coming days. I pray for times of relief from your weariness. I am no theologian, but I do believe that the Holy Spirit in a mysterious way, unseen to us, is able to communicate with a loved one who is lost to us.
    Thank you for sharing and allowing me to get to know you in such a personal way.

    • Welcome, Lisa. My MIL has always clung to children’s toys – small stuffed animals. And she adores small children when we bring them to visit. My mom has a little bit of that, but not yet as strong an attachment to any one object. Isn’t it amazing that they hang onto music as long as they do? My mom mulls over old gospel hymns all the time and I love encouraging her to do that. And I LOVE your picture of the Holy Spirit communicating with them, even as we lose our ability to do so. Thanks so much for stopping by and leaving such lovely words.

  49. Karen B says:

    Diana,
    Wow. Thank you for sharing this painful season so honestly. Bereft… What a powerful word. My mother is moving in with my husband and I in a few weeks. her confusion is just starting. I admit, I am afraid.
    I pray for you to be continually refreshed and refueled with His love as you share your heart with others.

    • Oh, Karen. You are brave, indeed. Many years ago, long before this disease began to ravage her mind, my mother told all of us that she would never live with her children. Never. So we began looking at retirement communities when my dad became ill with Parkinson’s about 15 years ago. They chose to live about 135 miles south of us and mom stayed there until just over a year ago, when her condition worsened so much that the caregivers there were going to move her to a locked unit where she could no longer eat in the dining room with her friends. That’s when she agreed to come up here, closer to us, and though the initial transition was hard for her, within a few weeks, she was grateful to be nearer to me and to to see great-grandchildren a little more frequently. I encourage you to read about this disease and to read memoir from those who have walked this road. Every case is unique in some ways, but also every case shares some central pieces. Bob DeMarco’s website is a good one to subscribe to, even if you don’t read every post, just to keep up with current research and to get practical advice. Here’s the link: http://www.alzheimersreadingroom.com/

  50. All these little deaths are so hard as we watch parents slipping away due to dementia. Praying for comfort for you this day.

  51. I am heartbroken for you, Diana. My mother wasn’t completely sure of all of us the last few days she was conscious, but it was just days. I do not know how long this season will last for you. I know how much you love your mama. I hurt for you that you have to see her when she doesn’t know that you are her beloved daughter. I hurt just thinking of you having to lose her over and over again. I’m going to beg the Lord for mercy on you both, whatever that make look like.

    • Just getting home after a very late evening with a our daughters and their families – thanks so much, dear Carolyn, for your kind words and empathy. I send my love right back to you, with prayers for life to normalize and settle!!

  52. Dear Diana, I know this journey far so well. For my Mama, the LORD took her home to be with Him 1/30/2013 after fifteen years living near me when I was the primary caregiver although she, too, lived in three facilities over those years…progressing downward from senior residence to assisted living to nursing home after a shattering fall. I will not give away one minute of the precious time I had with her all those years, not matter how extremely hard it was. Mama had dementia along with diabetes and finally a cancer. The dementia was the hardest but I loved her through each step of her journey. God gave me His strength because it certainly was NOT mine!
    Yes, I miss her so. But this earth holds none of us. I am still on the journey of letting go and leaning on His comfort.
    My prayers are with you, precious daughter. I pray God holds you and your mother near to His heart.
    Caring through Christ, ~ linda

    • Wow, Linda, that is a long, long road. Kathryn – my MIL, whom I write about in the piece posted after this one and whom my daughter remembers in a piece here, too – had memory issues for about 8 years before she died. Those were made much worse by a brain bleed following a terrible fall in 2008. She’s been in full care or memory loss assisted living since then, on hospice for the last 2.5 years. I cannot know how much longer my mom will live, but I know this territory all too well. Thank you for your kind words – I am deeply grateful for companionship along this difficult road.

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