Life as it stands today

(This “update” post is actually several years old. But it gives you an idea of where we’ve been after the road that our life was on took a drastic and horrifying turn. Keep reading and following the links at the end of each posting … eventually you’ll find your way to a point closer to “now.”  But as the title of this blog says, my life is a journey … if you skip to the end, you may miss the whole point.  What’s that old quote?  Something like,  “Life isn’t a destination, it’s a journey.”  Well, welcome to my journey!)  ~Debi


Well, let’s see … what does my life look like right now?

I have a husband with a fatal, incurable, untreatable, degenerative brain disorder (Frontotemporal Lobe Dementia) who can no longer safely live in the same house as his family (we were all in danger from his increasing lack of impulse control).

I’ve become essentially a single mom to three teenagers. We’ve had to sell our nice custom-built house in a safe, quiet neighborhood so we could buy a mobile home located in a mobile home park in a not-so-nice area just so we can afford to support two separate households on a limited income.

New community.  New church.  New lifestyle.  New everything.

And grief.  Oh, my gosh, is there grief.

Grief for the man my husband used to be. Grief for the lifestyle / home / community we’ve left behind.  Grief for the death of our plans of becoming full-time missionaries in Albania.  Old friends lost.  More grief.  New friends gained.  More changes.  More griefs.

:::sigh:::

Probably one of the most important things that’s happened over the past couple of years has been discovering who my true friends are … and also who they aren’t.  Many people I always thought would be there for me if life ever got difficult just haven’t been.  But then, on the other hand, I’ve seen folks who are essentially strangers step in and help in substantial and unexpected ways at various times.

I still feel like I’m reeling from the magnitude of changes that have hit our family.

But I also think I’m starting to see some light at the end of the tunnel. Not that anything’s changing.  The situations are all still the same and continuing to worsen, but I feel somewhat rested after a summer of simply focusing on being a mom and bringing some joy, safety, sanity and stability into the life of my children.   I feel almost ready to start thinking about my next steps and what the future might hold.  And that’s a huge step for me.  Honestly, for about six months, I thought the future held nothing more than forcing myself each morning to get out of bed — it was tempting to just pull the covers over my head and sleep the days away.

Gosh, it’s been a journey.  A journey through pain, sorrow, grief, joy, faith, anger, sadness, disappointment, patience, changes, doctors, lawyers, poverty, plenty.  And the journey isn’t even close to being over … it continues steadfastly everyday.

While we were searching for a new church after we moved, I met with a local pastor here in our new community, and after telling him the full story of what’s been happening in my family over the past few years, he said, “I don’t ever compare one person’s story to another’s, and then rate the stories according to who has the worst problem … but I can honestly say that yours is the worst situation for a young family that I’ve ever heard in twenty years of being a pastor.”

Wow.  Heavy stuff.

But it was actually very healing to hear him say that our situation was beyond the realm of “normal” difficulties.  A number of people in my life have tried to downplay our problems, as if by belittling the  situation, it will somehow get better … or at least seem better.

But to have someone who handles people in crisis on a professional basis tell me that our circumstances are bad — REALLY bad — actually made the situations I’m facing easier to deal with than if I’d just heard another one of those well-meaning people try to make me “feel better” in the midst of it all.

Now I don’t want anyone reading this to think I’m about to roll over and die from depression or anything, but I also wanted any readers to have a quick peek into what’s happening and how serious it is for everyone involved.

And on a side note, I hear a lot of people say when they haven’t heard from someone who’s going through a crisis, “No news is good news.”

But I don’t believe that’s necessarily true. Sometimes the situation is so bad and so overwhelming that people can’t even put into words what they’re experiencing. I know there have been days when just taking a few minutes to pick up the phone to call a friend or drop an email to someone who cares was way too much work for me to handle.

So please don’t assume “no news is good news” in the lives of your friends, family, church members, neighbors, etc.  Rather, assume your Loved One needs you to be the one to make the first move to check on them.  Whether they’re in desperate need or not, they’ll still appreciate hearing from you, either way.


For a more recent update on how we’re doing, go to: October 6th, 2007


66 thoughts on “Life as it stands today

  1. I just had to visit your site after the comments you left on mine. I am overwhelmed just reading of you struggles, I can’t imagine how you can be dealing with everything and yet reamaining so strong. Just know God is with you and Jesus is at your side.
    Please come to my site often, if I can answer any questions or just be an ear to listen just know I am here.
    Bill

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  2. Wow, life has thrown you quite a curveball. I have no experience to compare to your current situation. I can only say – I will pray for you and your family. Your clearly strong faith will help you weather this storm.
    God Bless,
    WC

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  3. I am still learning all the features of my blog and it was only today, I came across your comment about you daughter Kelsey. I had not realized she was your daughter until now. If I have been able to help or ease her way in the least I am very happy. She is an amazing young lady, I have learned much from her writings and have even listed her as a link on my site. You must be very proud of her.
    Such an inspirational family, both of you sharing your thoughts and feelings. I feel blessed and honored to know both of you through your postings.
    You are both in my heart, in my thoughts and prayers.
    Bill

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  4. I was very touched when I read your page, “My life as it stands.” While I am not in quite hard of a time, my wife and I are in very bad times. We too have had to watch our dreams, dreams were thought were given and not too much to ask for, fade away and slip our grasp. Thank you so much for being willing to put the unhendered truth about your pain out there for everyone to see. Sometiems I feel like I’m the only one who is doing the same thing, and it’s nice to know that there are others who do time same.

    I’m sure you’ve heard every form of encouragment from the people in yoru life, so I will not mince words with you in a pathetic attemtpt to do the same. Just know that your word have not only been heard, but appreicated as well.

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  5. Wow, I agree with the pastor on your family. I can hardly wrap my mind around what you are going through.

    Just to give you hope and a bit of encouragement, we have just made it out of a dark place in our lives 6 months ago. I do understand some of what you are going through. We too moved out of a nice comfortable home into something a bit different…A camper in the middle of a public camping park. We lived there for 2 1/2 years. Through a series of hardships and dealing with taking care of a family member with cancer, who has since passed, we pressed on. It’s hard to hold the tears back thinking of that time. It was the hardest thing we have ever faced. I remember learning to be so thankful for even my next breath, and God’s mercy for allowing us to stretch what we had from meals to just keeping our head above water.

    I will tell you that through it all, we grew closer as a family, our pre-teen children have learned lessons that I know will last a lifetime, and we all have learned the sweetness of our Lord in the dark. Our perspective of life has definitely changed.

    As we were living in our camper, which I praise God that the park was wooded and had plenty of birds and squirrels. The Lord showed me the how special the Mockingbird was. It is one of the few birds that sings in the darkness and is always willing to learn a new song. I’ve learned some new songs too from our times there.

    I also drew strength from a classic devotional called “Streams in the Desert” by Mrs Charles Cowman. It was given to me by a true friend…I now understand that too. :)

    My heart goes out to you and we are praying for your family. Some people are afraid of change, I now embrace it and please know that this too shall pass.

    Thank you for all you do and your willingness to help make others’ lives a bit better. And ultimately, allowing a glimpse into your families’ lives during this difficult time. May God comfort you and his presence be known to you more richly during this season of life than you’ve ever known before. –Melissa

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  6. Debi:
    My sympathies to your family in this terrible situation. I just want to tell you that there is a factor in this situation which will help you, and that’s TIME. One of my children is mentally ill, and about 5 years ago it just came to a head. I didn’t know where he was much of the time, and when I DID know, the situation was always terrible. I would estimate that in a 5-year period, we spent about $100,000 trying to get help for him, and trying to fix the things that were wrong. It seemed like every day there was a new twist. He spent time in jail, and time on the streets. During this time, my husband lived 130 miles away, necessary for his work, and we only saw him on weekends. I would lie in bed at night and imagine the worst, and I sometimes prayed that I would not wake up the next morning, because I just couldn’t DO IT ONE MORE DAY. Then it occurred to me that I still had a 12-year-old at home, and I didn’t want him to find my carcass some morning. He was still kind of a little kid, and he deserved parents too.

    A lot about our lives changed then. We DID lose friends, but other people stepped up and helped us, listened to me, took an interest in the younger son. I came out stronger, wiser, and yes, a LOT poorer financially, but we are all still standing.
    My son is still not perfect, but he’s better, and I know now I can’t make him right. It is now and will always be a sad story. He can’t live with us, but we do have to help him financially. The younger one is graduating from high school this year, and he is a happy kid and a good student. I’ll always regret that a part of his life has been so hard, but that’s the way it is.
    You will be in my prayers and my thoughts. I wish you the very best life possible. Take care of yourself. Jean

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  7. Debi,

    Through your words, honesty and devotion, your healing may well be happening right now, but for others — even as you still wait for it to happen for you and your family.

    I see you living out this quote from Mother Teresa (I’d not be surprised if you already know it well):

    “Joy is prayer—Joy is strength—Joy is love—Joy is a net of love by which you can catch souls. God loves a cheerful giver. She gives most who gives with joy. The best way to show our gratitude to God and the people is to accept everything with joy. A joyful heart is the inevitable result of a heart burning with love. Never let anything so fill you with sorrow as to make you forget the joy of the Christ risen.”

    I also want to thank you for closing this message with a word about assuming “No news is good news.” I have a friend who moved to another state with his son to start a new job, leaving his wife and daughter here until he gets it established. I have another friend who was deported, leaving behind his wife and two sons, and was not here to see his baby girl born three months later. I’m going to reach out to them today, just to check in and check up on them.

    Here’s another quote that’s attributed to Mother (though not sure of the authenticity), it might serve you well, too: “I know God will not give me anything I can’t handle. I just wish He didn’t trust me so much.” I see the incredible hardships my friends have gone through, and I think that God must not trust me with too much at the moment – and I’m so thankful for my ordinary struggles.

    I’m blessed, I truly am. But then I believe we all are, if we choose to feel the joy even through the sadness. God bless you and your family, Debi.

    – Jim

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  8. Dear Debi;
    I have compassion for you and your family. I cannot imagine what it would be like to be in your situation. Much more, I cannot imagine what it would be like to be where you are without the love of God.
    I pray for you everytime you come into my mind. I have learned to respond when the Spirit of God places someone on my mind; I know it is time to pray. I am way across the country, but my God is not limited by time and space.
    In those dark times when you feel most vulnerable and alone remember that God has placed you on the hearts of many people, me included.
    God bless you, Debi, and all those you love!
    Jon in South Carolina.


    Jon …

    I can’t thank you enough for your kind words and prayers. It means the world to me that people I don’t even know are lifting my family to God in prayer. Saying a prayer for you and yours in the new year, Jon.

    ~Debi

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  9. Thanks for stopping by my blog.

    I had used to know a woman whose husband had died of the same thing. It always sounded so awful to me. Nothing like slowly losing the person you love to something as bad as this. :-(


    I have a book on my shelf that I’m currently working through. It’s called Ambiguous Loss and talks about how difficult it is to lose someone who’s not really gone. There’s no closure. There’s loss. But then again they’re still there. I believe I heard Nancy Reagan quoted one time as saying that watching her husband, Ronald, slowly succumb to Alzheimer’s Disease was “the long goodbye.” I think that’s an apt way to express it. Maybe it’s more like The Long Ambiguous Goodbye.

    ~Debi

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  10. Debi, I am on your frozen assest email group and you have blessed me by having it. My husband has an incurable cancer, but mostly he is still with us doing okay and I can’t even begin to imagine what you are going through. Please know that you and your family are being prayed for.
    Beverly
    Texas

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  11. Debi, I am new to the Frozen Assets list. When I read your post, I accepted your invitation and came here to read about your difficulties. Gentle hugs to you sister. I think you are coping with this horrible situation better than most of us would. My husband has been ill for almost two years. I can emphathize with you when you grieve at the loss of your husband. Mine is a shadow of his former self. I cannot imagine how it must be to have to sell your home and move to be able to cope with the situation you are in. I have no way to help you, or give you assistance, but to say that you and your family will be in my prayers. Stay strong.

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  12. My heart goes out to you. I know that the Lord above has the answers and the timeline and he too is walking with you through this journey May God be with you and I pray for you that your needs are met and your sorrows are lessened by his Grace.

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  13. Oh sweetie, you don’t know me but I’m praying for you. I’m a member of the FA group. My heart goes out to you and your kids. Your faith in God is so positive, and inspiring. Blessings for you and your family and prayers also for your husband who’s journey to be with Christ will be a smooth one.
    Diane

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  14. Dear Debi,
    I came to your post through the Frozen Assets list, and I promise to say a little prayer for your family each time the daily digest pops into my mailbox or I encounter your Frozen Assets book in my kitchen. I have had and currently have family members with similar conditions, and I understand the frustration and grief. Thank you for your candor and to help me appreciate my loved ones a little more today!
    Michelle in Michigan

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  15. Debi

    You and your family will be in our prayers. I am so sorry that this challenge has come your way. I can only hope that in the end it will allow you to continue to bless the lives of so many others as you have understanding for someone else going through this same path. I pray your children will also have peace and be able to find some understanding through all of this.

    Hi, Jen … thanks for the prayers, especially for my children. This is a tough road to walk as an adult … I can’t imagine being a child and going through it all. My kids definitely need prayers. Thanks again! :-)
    ~Debi

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  16. Dear {{{{{{Debi}}}},

    I have been missing you. And now I know what you have been dealing with. All I can say is: well, this just sucks. I am sorry that you and yours have this trouble in your life. I can’t begin to imagine how God is working this to the good, but fortunately my lack of imagination has nothing to do with His abilities.

    Please feel free to write to me at any time about anything. As you know, I have been through a very great deal myself so there is very little in the way of human emotion that I haven’t expereinced myself.

    And aren’t the well-meaning people so very hard to cope with? I’ve been on the receiving end of the “why can’t you just jolly yourself up” messages myself. I realize that people can be afraid of contaigion when things go bad in someone’s life, but the Gospel bids us to step into each other’s shoes and bear each other’s burdens.

    I am not sure which burden I will be privileged to carry for you, except maybe to hold onto the faith for you that God is working this to the good and that sometimes, His idea of good and ours is at odds.

    I love you, my friend and sister,

    Gloriamarie

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  17. Dear Debi,
    My thoughts and prayers go out to you and your family. I get your Bright-kids email and noticed your blog link, wow. I don’t want to downplay what you are going through, I think God must have chosen you for this journey because He knew you could handle it, whereas, maybe someone else would not. You are couragous, and I hope God opens a window for you where he has closed this door.
    Prayers and hugs,
    Denise

    Hi, Denise … I’m glad you found your way here to my blog. Honestly, on most days, I really don’t feel very strong or like I can handle any of this … but I know that when I’m weak, He is strong. Thanks for the prayers and hugs. :-)
    ~Debi

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  18. Your story helps and encourages me as I work my way through mine. I found myself nodding and ‘uh huh-ing’ through much of the end of this post. Thank you for sharing it.

    In my struggles, I find words are not much comfort, but hugs are very healing. So,

    Hugs to you
    Jennifer

    Hi, Jennifer … thanks for the hugs! You’re right about words sometimes not being overly comforting. I find that a listening ear and a warm hug go much further than words on the down days. I’m glad my story added some encouragement and help to your situation.
    ~Debi

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  19. I’m also from the FA group. I lost a good friend to cancer last year and will always regret not taking more time to be there for her. Please know that you and your family will be in my thoughts and prayers.

    Mickey

    Hi, Mickey … thanks for stopping by and commenting. Those regrets are so difficult, aren’t they? When my grandfather was dying, people all around my grandmother kept telling her that she didn’t have to go to the nursing home everyday to sit with him. That she needed to take time for herself. But she kept insisting that she knew if she didn’t spend this time now, she’d always regret it. So she chose to live her life in a way that would ensure she wouldn’t have lifelong regrets after Gramps was gone. He’s been gone for several years now, and Grandma has no regrets for spending each of those final days and weeks at his side. I think I can definitely learn a lesson from Grandma in the way she lived that out. I have too many regrets as it is about life … don’t need to add more to the mix for the future.
    ~Debi

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  20. Debi, a friend on a message board mentioned your blog (which I didn’t know you even had), and I am praying for you & your family. Overwhelming, yet, He is in control, He is watchful, He is standing beside your dear husband as He stands and holds you & your children in His wonderful Arms. He is good because of Who He is, and we can trust Him even at times like these… I’ve had to hold on to Him so many times in my life and presently too… sometimes it seems so big… but He is faithful. Know you are being lifted up by countless members of the Body of Christ.

    {{{Many hugs & prayers}}}
    ~~Donna C

    Hi, Donna!
    Long time no see in cyberspace! Thank you so much for posting and letting me know you’re out there praying for us. I sent you an email … hope you got it. :-)
    ~Debi

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  21. Thanks for the reminder to “go first”.

    Funnily enough, yesterday I received a note from someone from church whom I hardly know. She wanted to let me know she was praying for me and she shared a passage that I needed right then.

    Praying for your family,

    Esther
    a.k.a. “Mrs. Nicklebee”, one of Kelsey’s readers.

    Hi, Esther … thanks for stopping by. I’m glad you’re out there reading Kelsey’s blog and praying for our family. Greatly appreciated! :-)
    ~Debi

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  22. It sure does help when others don’t minimize the fear, sorrow and danger you’re facing. I used to be involved in more than one dangerous, abusive relationship, and I know what that particular wilderness feels like. There are no words to adequately express it. There are no simple platitudes that would not be insulting to you, or that would fix anything.

    I want to applaud your courageous efforts to hang in there for your kids, and to do what you can to keep your head above water, spiritually and emotionally.

    Thank you so much for the encouraging words. It definitely takes someone whose been there to understand, sometimes. And I know exactly what you mean about simple platitudes being insulting. I was bombarded with well-meaning people spouting their platitudes and “truths” at me … and through their ignorance, adding more pain and grief to an already difficult situation.

    ~Debi

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  23. hi Debi: I wrote to you a long time ago…before Thanksgiving. I had wanted to do something to help you financially but as yet haven’t done anything. I just thought of something I can do after reading through your blog. I have a home-based business through Creative Memories and we have a beautiful mission that was written by our Christian co-founder, Rhonda Anderson. Our mission is to help preserve the past, enriching the present and inspiring hope for the future.

    I would like to offer to provide you and your children with whatever album-making products you need to tell your family’s story, and your husband’s journey. It is my hope and belief that the process of preserving these memories could be both rewarding and cathartic for your and your family. During the darkest times, I believe it’s so important to remember the good that has come before all of this happened.

    You can email me directly from my web site to let me know what you need to get started. I am also having an all-day crop on Saturday, March 24 and will let my customers know that I will be donataing 10% of my earnings from that day to you and your family.

    With much love to you and your children,
    I pray that you feel the hugs I’m sending you right now.
    Peg

    Hi, Peg …

    Wow. Thank you for your generous offer. I’ll email you to talk details. And yes, I feel the hugs. :-)

    ~Debi

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  24. I heard of your blog through the Frozen Assets group. Thank you for sharing your experience and lots of ((((hugs)))) for you and your family.

    Your blog hit home with me, as I have been dealing with my own health issues this year. To get through it, I was really leaning heavily on one of my friends for support to the point where I really felt guilty. After reading your blog, the guilt was replaced by gratitude for this wonderful friend of mine. I even shared the last three paragraphs with her as those resonate the best.

    Hi, Erica …

    Thanks for stopping by. I’m so glad to hear that you’ve developed a new appreciation for your friend’s ability to be there for you in the midst of your health difficulties. It’s a rare thing to find a true friend. I’m glad you were able to share with her some of your gratitude and thoughts. :-)

    ~Debi

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  25. Dear Debi,
    I was reading again to see if any changes had taken place and to let you know that out here in South Carolina at 2:00AM there is still someone thinking of you and praying for you and all those you love.
    Of even greater comfort is that our prayers are not just mere words breathed into the air, but that Our Loving Father hears the prayers and answers in ways that sometimes we cannot see, but which move the heavens and send angels rushing your way just when you need it most. Anymore when I am moved to pray I always figure there is an immediate need, but sometimes a postdated portion of each prayer is left at the Fathers throne for times when He knows the need is most pressing.
    God bless you and all those you love! In Christ Alone, Jon in South Carolina.

    Hi, Jon …

    Thank you so much for those late night thoughts and prayers. I can’t even begin to tell you how much it means to me. :-)

    ~Debi

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  26. Hi Debi,
    Thank you for your honesty and your faith. I’ve been going through a dark time recently and someone said to me “God would never give you more than you can handle.” I’d heard it before (and probably said it too!), but it sure did feel like a kick in the stomach. He had given me more than I could handle… So, what does that say about me? I thought. Then I read 2 Corinthians 1. Not just verses 3 & 4:
    3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
    (Which helps us find some portion of meaning in it all, but further on in verses 8 through 11:
    8 We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. 9 Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. 10 He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, 11 as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.
    Especially the end of Verse 8 — “far beyond our ability to endure, so that we despaired even of life.”
    I believe God does give us more than we can “handle” on a regular basis, otherwise would we really need him? Maybe our idea of what we can “handle” stems from a self-dependent attitude instead of a God-dependent attitude? And maybe we, at least I, shouldn’t measure myself on what I can “handle”….
    Again, thank you for sharing your life and heart with us.

    Hi, Gerise …

    THANK YOU so much for sharing! I think your wise words were exactly what I needed to hear today. Blessings to you.

    ~Debi

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  27. (((((Debi)))))
    First let me say that I was thrilled to receive my Charlotte Mason e-newsletter and to discover your new website. It is beautiful and very well done!
    I am praying for you, your husband, and children. I can imagine, but not really know, all that you are experiencing.
    Suffering is never easy and it is a mystery. But I do think that as we follow Jesus closely as His true disciples, our lives will reflect aspects of His, and suffering was certainly part of His life.
    But, if we can offer our sufferings to Christ with a trusting heart, I believe He can use it to pour out His grace on others. Suffering is not useless, and it is not without meaning.
    I have learned that asking “Why?” can be an exercise in frustration. We will not always understand because His thoughts and His ways are so far above ours. But, I do know that His plans are for our welfare, not our woe, and that all things work together for good for those who love the Lord.
    Last year my husband lost his job and was out of work for 6 months. We were not eligible for unemployment due to a loophole in the law. He finally got another job at 1/2 of his former salary.
    This year, on Feb. 20, we found out my husband had cancer in his right eye. We have no health insurance, as we could not afford any. We think the radiation treatment has worked, but only time will tell.
    As much as I do not like it, I believe that cancer will always be a shadow in our lives.
    At the end of this month we will be moving to a 2 bedroom 2 bath apartment because we can no longer afford to live in our current home. The apartment is about 1/2 the size of where we now live.
    We have learned the wisdom of taking things “one day at a time” because as Jesus said, “Each day has enough trouble of its own.”
    We have learned that true peace and joy can come only from the Lord and that He is our Provider and Sustainer in all things.
    And we have learned to be thankful to God for all things. Having a thanful heart, I believe, is a real key to contentment in life.
    Sorry for the length of this post. I pray it encourages you. Please feel free to write me anytime. I would be honored to be your friend.
    Sincerely in Christ,
    Jeannie

    Hi, Jeannie …

    Thank you for taking the time to share your heart and your experiences. Although I’m sorry for what your family’s going through, it helps me to hear about it. Nice to know I’m not alone (although I seriously wish you weren’t facing serious difficulties, as well).

    ~Debi

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  28. Hi Debi,
    I had lost track of what has been happening with your family and your husband’s health when I finally received the Simple Times email today.
    I am terribly sorry to hear of all the difficulties you’ve been going through. Please know that there are a lot of people out there (me included!) that wish you the best and are thinking of you.
    I know in my own dark time I prayed a lot. The people I thought were friends to my husband and I weren’t and we also found out that blood isn’t thicker than water. Know that the Lord blesses us in the most mysterious ways and he sends us special gifts at the times when we need them the most.
    My prayers and best wishes to you and all your family.
    Best regards,
    Karen :-)

    Hi, Karen …

    Thanks for stopping by. I really appreciate you sharing your thoughts with me. It’s difficult to walk out this path, but it’s always nice to know others have been through at least somewhat similar things.

    ~Debi

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  29. Debi,
    I have subscribed to Simple Times for a long time and was aware and so sad for your situation. Thanks for being open and honest. I asked for your Frugal for Dummies book for Christmas, hoping it would help your financial situation in some way.
    I’ll be checking in here daily, hoping to encourage you.
    Willow

    Hi, Willow …

    Thank you for stopping by and commenting. I appreciate your encouragement and support.

    ~Debi

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  30. I appreciate your being able to put into words your journey.
    Don’t doubt that you have a gift and that God uses his saints to bring glory to His name. God Bless.

    Thanks for stopping by and commenting. It’s a bit scary to put my thoughts “out there” for all to read. I appreciate the encouragement.

    ~Debi

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  31. Debi,

    I read your post on FA, and have had you on my mind these past months. I lost my dad to a form of Parkinsons with Dementia 5 years ago. Although I was not in your position, which is so much more difficult, I will never forget the deep pain from watching him try so hard every day to rise out of the mentle fog and let us glimpse the father and husband we knew and loved. It was as though he knew what we could see, and was caught in a web.

    I want to send you a big hug and tell you that I pray for you and your family. I pray for you all to have peace and rest from pain.

    Jay

    Like

  32. May God bless you, comfort you and strengthen you through this time of trial. I will pray for you, your husband and your children.

    Like

  33. Dear Deborah,

    I can only give you my sincere thanks that you are still going. You have my deepest sympathy, you really have.

    Now, is this problem genetic? If it is, have you had your children tested?

    I know this is probably not a nice thought. I’m hoping that all is clear for you.

    May God richly bless you and yours.

    Dominus tecum
    Leonie in Warrnambool, Australia

    Like

  34. Hello – Recently my husband had a closed head injury that did not diag definatively via all tests. He had ‘episodes’ where he saw ‘snow’ (like turning station on tv) and then his focus clicked back.

    Well, he was left with left side weakness. Now after physical therapy of 6 months…has left arm mobility, but left leg weak/stamina low.

    I could go on with the other assorted stressors that accompany this situation, but I don’t want to rag.

    Do you have any insight from your experience that you could share with me regarding your husbands experience?

    Amy in Michigan

    Like

  35. Thanks for sharing, Debi.
    This morning I awakened, feeling overwhelmed with the impossibilities of dealing with chronic illness, and was crying out to the Lord for comfort. Reading your letter took the focus off my problems, and helped me to see that my difficulties, thankfully, no longer include small children, and my journey is closer to its end than yours. It has been a long tiring journey, but God has been with me every step of the way.
    You are a brave woman, and you are learning that nothing anyone can say or do will take away the struggles you face, but that God will hold you in His everlasting arms always, to protect, strengthen and comfort you.
    I thank you for being so candid, and I am blessed by reading what you have written, and the answers of those who have responded to you. The writer who gave the words of Paul in 2 Corinthians 1:1-11, touched me in a way nothing has in a long time.
    You, your children, and your husband will be in my prayers continually, for you to be sustained, mentally, emotionally, physically, financially, relationally and spiritually. God bless you beyond all our wildest imaginations. He is Faithful!
    Yours in prayer.
    Jacque

    Like

  36. Hi Debi,

    You wrote me a sweet email a while back about how buying a second-hand, but beautiful, quilt really made your day. Since then I have looked at my white chenille bedspread with more appreciation, and I have made the trek to our neighborhood laundromat more often to bleach and wash this old beauty–even hanging it in the sunshine for a little extra stiffness and whitening. I think taking good care of my white bedspread makes keeping up my bedroom, my sanctuary, easier. I guess I just wanted to remind you to enjoy that old beautiful quilt, even on this hot summer day.

    Please remember you have friends you have never met out here, and that we care and are sending prayers and love your way. :)

    Lisa

    Like

  37. Debi,
    I have been in awe of you since I first meet you on the Frugal Friends board. You were so young; so knowledgeable; had books published; you were my role model. Now I am even more in awe of the how brave you are in sharing this situation with all of us. Take care of yourself and your kids. I can’t imagaine dealing with a situation of this magnitude. Thank you for sharing it with all of your online friends.

    Hi, LeAnn …

    Thanks for stopping by. It’s funny to think of myself as anyone’s role model (except for maybe my kids). It’s encouraging for me to hear that sharing these current struggles can be at least somewhat inspiring to others. I hope it has that effect. I truly just want to be honest and open about my life, my struggles, any lessons I’ve learned (usually the hard way), and just things in general.

    Nice to “see” you again. :-)

    ~Debi

    Like

  38. Sending hugs ((Debi))
    I wrote a similar type post recently.

    You’re right though that people forget to check on us:(

    It stinks–sometimes I don’t have enough energy to raise my hand and ask, but if they’d just ask I could tell them what I need.

    I hope you got those albums and are working on them as you can:)

    Lizzie

    Thanks for the hugs, Lizzie. It’s sad how often people in crisis are forgotten about by their friends and family.

    ~Debi

    Like

  39. Praying for you today! I trust you will find Jesus to be your all-in-all during your extended time of difficulty. I am listening to http://www.abidingradio.com while I type. I think the music might be a great blessing to you.

    Love in Christ,
    Karen

    Hi, Karen …

    Thanks for the radio recommendation. Listening to it right now. It’s very soothing music, isn’t it?

    ~Debi

    Like

  40. Peace Dsimple,

    A very thoughtful blog. God bless you and all that you do. God tests those whom He truly Loves.

    Peace be with you

    Abdur Rahman

    Thank you so much for the kind thoughts and peaceful wishes, Abdur. :-)

    ~Debi

    Like

  41. Hello Debi,

    May the Lord be with you. It’s shocking to read all that is going on in your life and I commend you for maintaining such an open, honest, and caring spirit.

    Unlike some others, I am in a position to help you. May I send you a check, buy some books, buy some tupperware? Let me know what I can do to help you.

    Thank you, Debra, SoCal

    Hi, Debra …

    Thank you so much!

    Honestly, my initial reaction is to say, “Oh, no … you really don’t need to do that.” But I know what it’s like to help others and I suppose I just have to swallow my pride for now and say, “Thank you. That’d be really nice.” :-)

    If you need to purchase Tupperware or books at Amazon, it’d be great if you ordered through the web links that you can find at my blog (every little bit helps!). But if you’re just interested in helping my family a bit, those things actually only pay me a small portion directly. So I suppose a check would go a bit further.

    My business mailing address is:

    Deborah Taylor-Hough
    3930 “A” St SE, Ste 305, #119
    Auburn, WA 98002

    ~Debi

    Like

  42. hi….. I believe what you’ve been through now, God has it own purpose.And it clearly showed that during the difficult stage of our lives we found the truest friend and people that will standby no matter what.We also found those people whom totally strange to us but in their little own way, they are ready in helping us. God is always in your side, when you feel down and wanting to give up. Think the undying love of God for you…Just keep your faith and trust with him……
    Godbless you and your family…

    Like

  43. Hi, Debi. I’m Eve, your fellow pilgrim out here in the blogosphere. My heart is full as I read all these messages, because I remember what my life was like when we had a dying family member. You think you are a believer, and you think you have believing friends, until you really begin to suffer. Then, as C. S. Lewis said, you discover there are Christians, and then there are BAD Christians. ;o)

    But reading the exchange above between Deborah and you, in which Deborah, who has the “world’s goods” and wants to offer some of them to you, and you, who are in need… well I have to say God bless both of you. That’s James and 1 John all rolled up together. It’s absolutely refreshing to stumble across Christianity in action.

    ~Eve

    Like

  44. Hi, Debi – I got to your site just looking for a recipe – God works in really mysterious ways. We have been going through some tough times ourselves, but nothing like what you and your family have been. Your site has been a real eye opener to me about how faith can sustain you through no matter what. I want to thank you for sharing what you’re going through. God bless you and your family – you will be in my heart and in my prayers.

    Like

  45. I have been receiving your newsletter for sometime and think I remember you mentioning some of this there. Thank you for sharing what is going on in your life.

    This is my year for health issues so, in a small way, I can relate. I just wish I could wake up and find it had all gone away and life was the way it was before.

    I have no words that can fix anything for you. Just that I will keep you in my prayers and ask the Lord to bless you and your family.

    Like

  46. I am really glad to have found your blog. Thank you for being willing to share, as you walk through the storm. I look forward to reading more.

    Hi, Marquita …

    Thanks for taking a moment to comment. Welcome to my blog. :-)

    ~Debi

    Like

  47. Hi Debi

    Though we have never met face to face, my heart aches for the hurts you are carrying.

    I have never experienced anything like you are currently living out, but I do know that God has promised to never leave or forsake us, He tells us that he will never give us more than carry, that we can come to Him and He will carry our burdens for us, if we just cry out to Him and trust Him with the details of our lives.

    I know, easy to say and harder to do-
    Jeremiah 29:11 *amplified bible

    God has good thoughts and plans towards me. He intends for me to have peace and not evil and to give me hope in my final outcome.

    Psalm 9:9

    The Lord is my refuge and high tower when I am oppressed, a refuge and a stronghold in my time of trouble.

    Psalm 147:3

    He heals my broken heart and binding up all my wounds (curing my pain and sorrow).

    (((((((((((((((((hugs)))))))))))))))))

    Kimmie
    mama to 6
    one homemade and 5 adopted

    Like

  48. Greetings Again Debbi!
    It is 11:07 PM here in South Carolina and the Lord our God has led me to your site and caused me to kneel at His throne placing you and all those you love carefully in His Hands. I know how He loves you, and I know He knows your needs even before we even ask.
    This year God placed a scripture on my heart that gives me great comfort and great joy. Let me share it with you as it fits your place as well.
    1 Peter 1:3-9, “Blessed be the God and Father of our Lord Jesus Christ! In His great mercy He has given us new birth into a living hope through the resurection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil, or fade—kept in heaven for you, who through faith are shielded by God’s power until the coming salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes
    even though refined by fire—may be proved genuine and may result in praise, glory and honor
    when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe him and are filled with an inexpresible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls.” NIV.

    I hope that this brings you joy as you carry the cross of Christ where ever you go. I pray that you find Him close at hand in the lonely dark nights. I pray that He gives you the peace that only He can give when the world just gives us turmoil and confusion.

    May God bless you and all those you love! Jon in Upstate South Carolina.

    Like

  49. I should have written sooner. I actually was going to send snail mail…I have your address in Auburn. Are you still there?

    I trust that you are doing well. My former spouse was diagnosed with Schizophenia, which is not your situation, but saying “good-bye” to that loved one, in so many different ways, is unbelievable. I had a fifteen year old and a four year old and I was a stay at home mom. Our lives changed drastically!

    Today the girls are 35 and 24 and our scars have been covered by the Blood of Jesus. He was and is faithful…as you know, if He is for us , who can be against us?

    Your heart will continue to fill with compassion for others because of your experience and suffering. We may understand in full in Heaven but for His Glory He has allowed these trials.

    If your snail mail is the same, let me know.

    A Sister in Christ,

    Karen

    Hi, Karen …

    My current snail mail address is:
    Deborah Taylor-Hough
    3930 A St SE Ste 305, #119
    Auburn WA 98002

    (Not sure if that’s the Auburn address you have or not.)

    Like

  50. Debi:
    I stumbled across your blogs this morning during my devotion time. I am finalizing this morning’s sunday school lesson for my junior high class and wanted to confirm some thoughts on Joy vs. Happiness …

    I love your site and your blogs … I am a believer in the Holy Spirit’s guidance in our lives and yet again … He shows me He is in control … even in the small things. I was so impressed with your Joy vs. Happiness, I checked out your Life as it stands today … my first reaction was shock … my next reaction was Joy and thankfulness to an awesome God …

    The father of my daughter … my husband of over 20 years … was diagnosed with the FLD in 2000. His father was diagnosed in 1997 and died in 1999. The last 10 years of my life have been incredibly painful and stressful but so filled with the JOY of our Lord. As you know there is nothing like watching the man who was your best friend, companion, love of your life turn into a strange monster.

    I too removed our daughter physically from the situation 2 years ago. Our families do not understand. I prayed and am sure the bottle of tears Our Father keeps for me is lake size as well … before taking that difficult step. I believe I did not stumble across your blog at all. But rather the Holy Spirit chose this morning to show me that despite the doctor’s shock at discovering someone so “young” with FLD, that we are not alone.

    Thank you Debi for your beautiful witness.

    Like

  51. I’m so sorry for your hardships. I do understand and so resonate with what you said about finding out who your true friends are. I myself, have an incurable illness, someimes my mind is affected in it too, I have gone in the last few years from being extremely active to a full time wheelchair user often bed bound, BUT the hardship for me, is that I have to cope with it all on my own. Those friends I thought were life long friends have been proved false. With one notable exception. BEing in the UK where our care system doesn’t care, and its often the story, I get no help to manage and just lie in bed sometimes for days, always in agony in my body, without a soul and that has become the real cross for me. The illness will at some point kill me, but, that’s not the hard part of the conditoin for me its the abandonment and desertion so that I am left to cope with it all alone, physically, mnetally and emotionally. But God saved me during all this, but I was reborn into the grave, my church family also abandoned me when no longer able to attend, but he is good. But I think many of his people could learn to be more christ like to those in severe afflictions. The Bible says much about it. So I do understand, but I@m still very sorry you have this to deal with.

    Like

  52. Hi Debi,
    Just read your newsletter about what you are going through. My family is right in the midst of starting what you’re going through. I’ve lost my job with no job prospects, my husband is in a wheelchair due to a broken foot that won’t heal & complications from diabetes, our daughter & her baby (our bright spot) live with us, we could very well lose our family home, and we will need to move somewhere more affordable! We’ve lived here 16 years. I cry every day. It’s tough having no money & no place to go. We know the Lord is in the details of our lives and we pray for his peace, love & wisdom. You are not alone and now I don’t feel so alone. It does happen and we make do.
    Take care, & God bless you all,
    Marilyn

    Like

  53. When I was making my way back to God (although of course He had never left me) I came across a little book that was titled
    Promises from Jesus. And then I began reading other books from the library, like Living More on Less and via interlibrary loan one about Eating for $15 per week. Gradually I came to realize how rich I was with six pairs of slacks, instead of like the person who had only two and gave one to the person with none. Once again my life has hit a bad stretch by being laid off at age 62 in the state of Michigan and no Cobra. I thank God every day for a husband now who lives a Christian life. And my heart aches that you do not have that comfort. Please accept my prayers for you now that your life will get easier. At my church we have people who would help install a water heater–any chance of such an angel at your church? Or at Habitat for Humanity? Thank you so much for your newsletters. They have been very helpful to me.

    Like

  54. Dear Debi,
    I am so sorry for what you’re going through. I pray that God would continue to grant you comfort and strength as you continue to support your family in this difficult time. Just a word of encouragement…many are the afflictions of the righteous but the Lord delivers him/her from them all.
    Please be encouraged that God is still God and He cares for you. I will remember you and your family in my prayers.
    God bless
    Daphney

    Like

  55. Debi, my prayers are with you in this situation, and your strength is truly amazing in what must at times seem like an impossible situation. I am married to a bipolar (manic depressive) man, and we had issues with physical abuse in the early years of our marriage. I chose to stay, with God’s help, not because I felt I had no right to leave, but because I could see the truly sweet and wonderful man that he was inside, and that he was not at heart an unrepentant monster, but a deeply troubled person who despised what he did. After getting his meds in order, while he still very much suffers from depression, and he has some very down days, there has been no physical abuse in many years, and I am so proud of him for that. The one thing I did, which to this day I am not certain was a good or bad decision, was not to ever talk about it with anyone. The few people who knew – mainly his mother, sister and a mutual friend – found out because he told them. I didn’t want people to get the impression that he was some awful person, and if I’m being completely honest, also because I didn’t want people to look down on me as an ignorant, weak woman who would allow herself to stay with an abusive husband. But those days seem so far in the past, and while we have problems like anyone else, he is a real gem who loves me and would walk through fire for me. We have gone through a lot together, but I believe we’ve emerged stronger because of it. God bless your family and reward your faithfulness.

    Like

  56. Debi, I know just how you are feeling. I didn’t read all the way thru but my husband just died and he had suffered from a frontal lobe stroke too… His inital stroke was in Dec of 2004 and he died Jan 27th of this year. What a nightmare it has been…one that others can’t comprehend — i too had to put my husband in a nursing home for his and our saftey… wow you are in my prayers… I am still dealing with the finality of his death…and the relif from the constant worry… He is finally at peace…with no more pain nor anger… your in my prayers…

    Like

  57. Debi, I didn’t know what you have been going thru. I’m so glad I read this today and can add you and your family to our prayer list. I live in Georgia, but I wish we were closer. I’m sure my husband would help you with your water heater.

    I’m a bit surprised that you haven’t already gotten people rushing in to help.

    I love the way you write, and your heart. Thank you for all the good information you’ve given us for so long.

    Debi, I believe in miracles. We’ve had several ourselves. If you feel up to fighting for a real big miracle, I’ll stand in agreement with you. I can even call you or we can email back and forth and I’ll give you the details on how we got ours.

    My first son was born with brain damage and we’ve had SEVERAL big miracle healings with him, and my husband had throat cancer and received a complete healing in 3 weeks. There is a page on one of my websites that tells all the miracles we’ve had and the link is also on the main website. You’re welcome to read that to help increase your faith. I wish you guys could come to this church near us, where we experienced so much of God’s presence and such quick relief.

    My websites are:
    http://www.chastityrose.com

    http://www.blessingmeadowsministries.com/christopher.htm

    If there is anything I can do, please let me know. Please tell us about your children so we can pray for them, and maybe write to them and encourage and comfort them. I imagine they’re suffering with the strain as well.

    My family will be in prayer for yours and we will lift your husband up to God for a healing, and your entire family for all your needs to be met, and your hearts strengthened!

    Please keep writing. God bless you!

    Like

  58. Hi agin Debi, how are things going at this present time…
    did you write that book you spoke of about?

    A couple of years back I did go to a grief group when things were getting to intense… I too lost our home of 23 yrs and was feeling in need of some help… the others in my group were suprised that I was there…Grief? after all he was still alive wasn’t he? it did help but I felt like I was more the teacher then part of the group….

    I am dealing with my grief is slow chunks – trying to be kind to myself…I know I have spent the past few years saying my goodbyes slowly…I even asked my pastor what it said in the bible…I was a wife but not a wife, a mother but really not his, a guardian, ??? what was I – a widow whose husband was still alive an yet not a widow….I spent a lot of time putting out the fires my husband created within the realm of his illness, hardly taking a breath to deal with the emotional side of it all.. now at least I can look back and celebrate the man he used to be and let myself feel the love we shared for over 40 yrs..He was only 68 when he died and this year would have been our 48th wedding anniversary….

    Last night I went to bed and cried finally…knowing that I wasn’t the only one to experience this kind of terrible loss – and to know others were out there who understood… You continue to be in my prayers Debi –


    I have a book on my shelf that I’m currently working through. It’s called Ambiguous Loss and talks about how difficult it is to lose someone who’s not really gone. There’s no closure. There’s loss. But then again they’re still there. I believe I heard Nancy Reagan quoted one time as saying that watching her husband, Ronald, slowly succumb to Alzheimer’s Disease was “the long goodbye.” I think that’s an apt way to express it. Maybe it’s more like The Long Ambiguous Goodbye.

    ~Debi

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  59. Wow – As a new friend, I did not know this. All of this is … well I will not and can not say anything that would not sound like a pat answer or a comforting enough answer.
    BUT it is good you shared this 2 and half yrs. ago and I will and do pray for you about it. God has brought you thru a lot. He will continue…

    Like

  60. Just wanted you to know. I understand what your going thru. I am 34 and my husband is 31 and also has FTD-Fus. He still lives at home and has a couple of months left. We have a 2 year old and a 6 year old both girls. Many prayers for you for strength. God is Good Always

    Like

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