Monday, January 26, 2009

How we are doing - Jan 26, 2009

I am dedicating this post today to tell you how Brian is doing, how I am doing and how the boys are doing - emotionally and physically, since I think I have made it pretty clear that spiritually we are doing well.

Brian -
Brian has had a great last few days physically. He hasn't slept much during the day. Cognitively, he is very "with it" and is remembering a lot more than he was early last week. He still has some issues with suddenly thinking an event that happened many years ago was very recent, or not remembering something that just happened, but only once or twice in any given day. Physically, Friday and Saturday, he was great. He had energy and maneuvered the stairs with confidence. He has not fallen since I last wrote about it on Wednesday. However, on Sunday, he said he felt his right hand and arm starting to get weaker. Still, he managed to get up, shower, get dressed (with a little help), eat a small breakfast, go to church, and then GO OUT TO LUNCH with some of our friends. It was such a successful day. He took a nap yesterday afternoon, but honestly, that is to be expected. He has had several phone conversations with friends and family. His speech is faltering and struggling, but he is able to eek out a conversation.

He is eating very little. He says food doesn't taste the same. He does eat some, though. He has lost around 8 pounds in the last few weeks. But don't worry, I am making up for it. Wait, on second thought, worry about it.

Emotionally, Brian is coming along. Friday evening and Saturday, most of the day, he was pissed. He had pursed lips and just kind of bounced his leg most of the day. He says he feels strong enough to keep fighting. Why not just try chemo again to see if it holds things off for longer? If he felt terrible, he could easier accept and stop fighting. So, I have explained to him that from the time of the CT Scan to the MRI, in just two weeks, the cancer popped up everywhere. It is in the leptomeninges, cerebellum bilaterally (both sides), brainstem and visible spinal cord on the MRI of the head. In hind sight, the symptoms he was having in October with the ventricles filling up and not draining was probably the beginning of this progression. The symptoms he had in December with the sudden vomiting and balance were signs of the worsening of this condition. The most recent scan simply confirms it. I ask him, "Why would we take more medicine that makes you weak and tired if it isn't helping?"

This conversation kills me. I feel like I am telling Brian to give up, like I am crushing his spirit and optimism. This man who has so courageously battled and so optimistically confronted every obstacle in front of him is now being told by one who has stood by him through every single moment of it all in the last 11 years that it is time to be done. MEDICALLY. I told him if he wants to keep fighting, then we turn all that energy and attitude directly to his spiritual healing. We give it all to Jesus. He says that is a given. He always gives it to Jesus. He is having a hard time not doing anything else medically.

Over the last few days, he is coming to terms with it. He is less angry. He does not sulk or become withdrawn. He is the same Brian as always.

Gavin and Grant:
I think they are okay. I have explained that the doctors said they don't think Daddy is getting any better and there is no more medicine to help Daddy's cancer. They ask me if Daddy is going to die. I explain that yes, Daddy is probably going to die. Naturally, to a 5 and 7 year old, there is no concept of process. When they pick up a golf club, they think they are going to get a hole in one each time rather than understanding things are gradual. They then ask me if Daddy is dead in the other room. "Mom, check on Daddy. He might not be sleeping. Maybe he died." They have questions about what Daddy will look like when he is dead, " Will we see blood? Will we see his bones?" I explain that no, it will not be like Star Wars or Pirates. Daddy will become more sleepy and then he will get sicker until he stops breathing and then he will drift off to Jesus. There will be no blood or bones or oozing.

I spend a lot of time reassuring them and confirming their emotions. Whenever we talk or they have questions, I tell them it is okay to be sad or mad or scared. Mommy is a little of all those, too, but we will be okay. The most important things is that Daddy loves and trusts Jesus, so he will go to Heaven to be with Him. We will go there some day if we believe the same things, but we have to stay here on Earth until Jesus thinks it is time for us. We have to spend a lot of time with Daddy making sure he knows we love him and doing fun things with Daddy.

I have explained that we will have lots of help from their grandparents, friends, aunts, uncles, and cousins after Daddy dies and while he is sick. There will be lots of people calling and visiting because everyone wants to see Daddy. So many people know and love Daddy and want to spend time with him. They will see nurses coming in and out of the house and there may be more things daddy needs to help him move - like the wheelchair, a hospital bed, a stair lift, etc. If they ever need to talk about any of it, they can talk to me or Daddy or anyone they know and love. Or if they want to talk to someone else who can help them, I can find them someone.

Grant and Gavin sometimes tell their friends. I make sure I tell their friends' parents if they play with them on a regular basis. Their friends think it sounds kind of neat. They will say things like, "Then I will come down lots more and play with you so you won't be sad." At times like that, I am grateful that they cannot currently comprehend the magnitude of this loss in their lives.

Sometimes they cry. I have found Grant hiding under a blanket sobbing, but trying not to, that he doesn't want daddy to die. I just pick him up and hold him and cry with him telling him, I know. It is okay to be sad. It is okay to be mad. I have found Gavin in similar situations. I just put him on my lap, stroke his hair, and tell him, I know. It is okay to be sad. I am sad, too. So is Daddy. It isn't anyone's fault. Gavin said, "It's the stupid devil's." He knows he is allowed to say the word stupid in connection with the devil, so he will say it again and again. I feel like screaming a few 4- letter words here and there, so I figure he needs an outlet.

Grant is confused about illness in this house. When Daddy is sick, he gets lots of attention and the mood changes. The kids notice this, especially Grant, being home after his half day of school with Daddy and Mommy every afternoon. He will suddenly get headaches when Daddy isn't feeling well and need to be held or need to watch a movie. Sometimes he needs ice cream. Sometimes he gets those things, sometimes he doesn't. I know it is confusing for him. I tell him Daddy doesn't want to be sick. I sure don't want any of them sick. I would rather play a game with him if he feels good. Sometimes it works. Sometimes it doesn't.

Otherwise, they are going on pretty normally. They are playing with friends, watching TV, doing homework, eating, wrestling, whining, fighting, etc. I am just trying to help them stay and feel normal in any areas I can.

ME
Honestly, I am doing well with a few exceptions. I don't really know how well I am sleeping. I feel pretty tired a lot of the day, so I think I am tossing and turning. Don't offer me aide on which sleep aid to take. I won't take it. They make me a walking zombie and I need to be able to take care of any issues that may arise in the course of a night. We have relatives coming into town this weekend, so I may take a sleep aid or just sleep in one day this weekend. My neck and my shoulders feel as though they are trying to hold up a 50 pound sack of flour or something. They hurt all the time. I had a massage on Friday, but it did little good to help ease the tension in my neck and shoulders. Any tips?

I have an unbelievable outpouring of support. Tomorrow, I plan on writing to tell any of you that are local or long-distance what we need, what you can do and what we don't need and what we would rather you NOT do. Not so sound ungrateful, but I know many want to help. There is only so much help one family can accept, though

I have contacted hospice. They admitted us this weekend which gives me much relief that if Brian were to take a sudden turn for the worse, I know who to call and what to do. The hospice contact was difficult for Brian. Since he feels good physically, he feels like people are giving up on him. I said, I have to have these resources here more as a "just in case." I didn't know what valuable resources hospice provides from a social aspect - counseling, advice, materials for the children. I am so glad I contacted them and can't wait to get more help with the children.

I am on a roller coaster. I don't think I am in denial. I am more in survival mode. One minute I am so grateful for the many blessings God has granted us with our lives and our children, and the next minute I break down and cry uncontrollably. One minute, Brian and I laugh and joke, the next minute I lay my head in his lap and sob about the unfairness. One minute I look at him and breathe in every square inch of Brian, the next minute I can't stop the tears from coming wondering when the last time he strokes me hair may be. I think these are normal when someone is dealing with a terminal loved one???

Neither Brian nor I are happy with how we are spending our time. I have been spending a lot of time on the computer reading emails and comments and writing blog posts. He has been watching a lot of TV and the boys are kind of just doing their thing. We want to do more together, to make these moments more impactful. We are going to do more to turn off the TV at night and play more board games and read more books together. We have to give the kids their normalcy, too, so it is a difficult things to balance. We don't want to shove memories down their throats. We want them to be memories that happen naturally. Yet, we know our time is likely limited so some things will be more forced.

That about sums it up. All in all, we are all gradually coming together. We are growing. We are grieving. We are accepting. We are praying. We are learning. We are bonding. We are loving. We are living.

Mostly though we....
KEEP BELIEVING

40 comments:

  1. I am not sure if this is what you want to hear or not, but your blog has been an inspiration to me...to be able to feel peace in such a difficult time. To be able to acknowledge anger/pain/fear, but not let it overwhelm you. I have been praying for you and hope that those prayers help to bring you continued faith in God's mercy, even on the darkest of days when life doesn't seem very merciful. I am so sorry for you, your boys...I can't imagine the "everything" you are feeling right now. But if I ever have a burden like this to carry I pray I can do it with the same grace you and yours have.
    Love and Prayers...

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  2. Wow, Angie, to have such grace to be even able to write down these tings at this time is a wonder. You are an excellent mom and handling the situation with your boys so well (when my husband's dad died, his mom told her boys they had a week to cry, then they had to man up...he is still bitter about that).
    You will be a testimony to your boys of how to handle grief and loss with grace and peace.

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  3. All that I can say is that I think about you often and I keep praying for you and your family.

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  4. What an awesome writer you are, it's like being in your living room,being part of what is going on right now. Angie you are so inspiring to your boys,letting them experience the spiritual gifts in ways many people never get to even think about.

    Angie about sleep, no pills are needed.This is what the Holy Spirit gave to me for a friend who's elderly Dad she was taking care of and needed some well needed sleep herself, and it worked really well.

    Before going to sleep, give away the many things that are running through your head to God,then see Him taking care of it all while you are asleep. That is one of His promises to us, taking care of the situations while we are asleep.say,"OK, Holy Spirit you are my helper, my alarm clock, I am going to sleep, if for any reason concerning husband, boys they need me, You wake me up, replenished with the needed energy, in the meantime, the time I do get to sleep is going to be a sound sleep, resting in your arms while you are taking care of the things during the night.Good night God, see you in the morning.

    I have put it to use myself and it works really well,what happens with this saying ? you are releasing your mind from the thoughts, you are telling it that someone else is taking care of all of the thoughts, your body,mind in return can lay down in peace, knowing it won't have to solve all the problems during the sleep.And knowing in case you need to get up for one of your loved ones, the Holy Spirit will be there with the energy, the alarm clock so that you can take of the situation in a wink of en eye.
    It makes for a well rested and reenergized body, mind and spirit. Good night. :)

    Love you Marjo

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  5. Beautiful. You guys are amazing in your testimony. Prayers being said here for your family and you.

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  6. Many thoughts for you and your family. I think all of you are showing amazing courage.

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  7. Angie. Not a day goes by that I don't think of you and your beautiful family and your courage. You are always in my prayers. Hugs.

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  8. Thank you so much for sharing. Once again you amaze me with your strength and your honesty.

    Prayers. Thoughts. All for you and your family.

    Love . . .

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  9. Still praying...you amaze me that during all of this you are still standing. ((hugs))

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  10. Precious in the sight of the LORD
    is the death of his saints. Psalm 116

    Dearest Angie,
    I am absolutely at a loss for words. I ache and grieve with you. I wish I could do something for you. The Lord has given you a special place in my heart. My brother and sister both buried babies this last spring. I have watched at a distance as my sister has wrestled with the Lord in her grief. She has grieved with hope, but has grieved tremendously. I have learned to be quiet as a result of a series of well-meaning but not very consoling statements that have come from a heart that desperately wants to know what to say but usually makes me want to insert this big foot of mine in this bigger mouth. Scripture says to mourn with those who mourn. I now try to listen and talk as little as possible. I hold her hand and cry. I pray for many to do that with you.

    Thank you for being a jar of clay that so brightly radiates Jesus (2 Corinthians 4:7-10). You are talking about real life, so honest and so beautifully raw. You are giving people hope through your agony. I have often thought that tragedy is not a catastrophic experience that we have, but the tragedy is never getting to know Jesus as the Redeemer of life's horrible agonies. I love that He was a real human being with real emotions. That He begged for the cup to pass as He faced the cross. I always got that He was deity, but realizing that He was fully human with a human heart that could break and shatter was something that He has revealed to me only in the last several years. He gives us the right to say, "My God, My God, why have You forsaken Me?" in the darkest hour of our souls. He is BIG enough for anything we can throw at Him.

    I pray that you will find your peace in pouring out every emotion of your heart to Him. He has allowed this road to unfold before you. He is busying Himself with your every step. I pray that you will know that the darkness that you may feel is the shadow of His wing and not evil. You are His precious one. And so are Brian, Grant, and Gavin. Be strong and of good courage for the Lord your God is with you even as you walk through the valley of the shadow of death.

    Much love to you, sweet sister, Shawn from Tennessee

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  11. You are definitely being carried by the Lord. For those of us on the outside looking in -- it is nothing short of a miracle. I can't imagine your pain. I am watching my precious Daddy suffer from cancer and that is hard/horrible.

    I pray you will feel God's strength and I'll be praying that the 50 pound yoke over your neck be removed in Jesus' Name.

    Lifting you up,
    Beth

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  12. I wish I had the right words to say. May God bring you peace on this journey. In my prayers, Indy.

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  13. We are praying for you--and we'll continue to. Please be honest about what people can and can't do to help you. You don't need 40 glass lasagna casserole dishes to return!! Most people haven't been in that situation so they truly don't know what is helpful. We're praying--Jorie

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  14. Thank you for being so kind as to keep us posted. I had no idea you didn't know about the amazing resources Hospice has to offer or I would have filled you in. Talk about Angels on Earth--that is what Hospice workers are.

    As always, you are in my heart.

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  15. Wow, simply amazing. Your ability to put your experiences and thoughts into words is amazing, and what a gift it will be to your boys to be able to look back on your words later in their lives. It's also such a gift for you to be able to share with any other wives/mothers who are currently or will one day in the future have to face what your family is facing right now.

    I pray that your time with Brian continues to be peaceful, meaningful, and fulfilling ... and with him feeling well, physically and mentally. I also pray that you'll find ways to make the most out of the time you have, and find ways to balance the memory-making with keeping the boys' routines consistant. So small feat!

    Look forward to hearing what we can do for you and your family... I may not know you, or live right by you, but would do anything I'm capable of to minister to your needs right now.

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  16. I appreciate the update. I worry about you and your family. Prayers continue. Sending hugs and a warm bath...I think a bath wouldn't hurt. Put in some bubbles? Big puffy bubbles that overwhelm the water and fall out onto the bathroom floor. No, that would be a mess that you would just have to clean up. Keep the bubbles under control...that would be more relaxing.

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  17. You are constantly on my thoughts and prayers. I too wish there were something I could do. Reading along and commenting just does not seem like enough. Seriously, anything for the kids? Anything let me know. They have mail here in Arizona.

    You are a angel from God. From the outside looking in, you are doing a phenomenal job.

    Hang in there, and I am with Texas Holly, take a HUGE bubble bath! :)

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  18. Thank you for sharing this update. In my prayers for you, I am going to ask the Lord to help your neck and shoulder pain...because if the massage didn't work - I don't know what else will! :)

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  19. I am having a hard time finding the words to express my thoughts. For right now, I am praying for you and your family, praying for strenght, peace and acceptance.

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  20. Brian is most proud of you, I am sure of it. You are showing tremendous grace and strength much the same as he is.
    Praying for warm, love filled days and nights; through it all.

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  21. Angie, I'm praying for you and your family.

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  22. Another bloggy friend requested everyone pray for you and gave a link to your blog. I'm so sorry for your pain! I just want you to know that I'm praying for you and your family. I don't know you, but from what I have read you are an inspiration for others. May God richly bless you and your dear family in this time. I love your closing, and yes keep believing in a miracle they do happen everyday! Sometimes they just don't come in the form we believe they should and that is very hard for us to grasp, but never lose faith. Again, I'm will lift you and your dear family before the throne.

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  23. Angie,
    After crying with you I have two pieces of advice.

    The first I think you already know. Go to God in a quiet place and just meditate with Him. First do any movements that will loosen the muscles in your shoulders. Talk to Him and listen to His response. I know that this works since I have applied it many times in the last two years of dealing with my DH dementia.

    Second is something I have been doing for years. Since my family has a history of ostioporosis I started 1500 MG of calcium with vitamin D. Then I talked to a friend who works with vitamins and minerals and she told me that calcium is a natural relaxer and that I should take it a night. When I forget my calcium I do not sleep as well and wake frequently during the night. When I take it I sleep well. Above all I do not have a groggy feeling and I wake immediately during the night if the need arises. If you feel uncertain about this contact your own doctor to check and see if this is something you can add to your routine before following my advice.

    I am praying for you and Brian, Grant and Gavin. Lord surround these blessed friends with your love and protection. Help them in the difficult moments and celebrate with them during the happy and memory making times. They are Your children in every sense of the word and will praise you for every gift of grace that you give them.

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  24. I am here for you. Anything.
    Kara

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  25. Sending my thoughts and prayers to you from Massachusetts.
    I'm amazed at your strength.

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  26. Thinking of you and your family.

    Your articulation of how you are feeling is so... amazing. I wish I knew of something beautiful and comforting to say...

    for now, just sending thoughts and prayers.

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  27. Hospice was an enormous help and relief to us when my father was dying. They were able to provide my Dad with actual physical comfort, but also provided the rest of us with a great deal of emotional support as well. I admire your able to just keep moving through the days, even as I know that it is unthinkable for you to do anything else right now. I will be thinking about you.

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  28. I've always heard that it's not the destination, but the journey, that counts...my spirit is with you as are my prayers...much love to you all sweetheart....((((HUG))))

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  29. Angie,

    I have been reading your blog for several months now . . . I don't even remember how I found it . . . I can only assume that God led me here. Your humor has made me laugh many times and your honest sharing of what you are going through has truly inspired me.

    I lost my husband eight years ago. Unlike you, though, my loss was very unexpected as he died very suddenly in an accident at the age of 37. In all honesty, I don't know which is worse, to lose him unexectedly without the chance to love on him and say goodbye or to know that it is coming and have to try to prepare yourself for it. What I DO know is that no matter what the circumstance of our loss . . . our God is so much bigger than the circumstance and loss, and He reveals Himself to us in amazing ways and carries us and provides for us and loves on us through it all. I know that when the grief is unbearable and you don't know what to do with it . . .you can cry out to God and He will bear it for you and get you through that moment. I know that when your kids are so upset you can't calm them . . .you can pray over them with trembling lips and hands demanding that He take the hurt and pain away and He will give them His peace in that moment.

    I know from personal experience that, even though I would never choose to go through the loss of my husband, I would also never give up the experience I had as God brought me through that time of my life. Even though I was in a horrible place without my husband, I was in the most amazing place with my God. We aren't guaranteed that we will grow old with our loved ones, but we ARE guaranteed that God will be with us NO MATTER WHAT. We are promised that He will use for good ALL THINGS if we believe in, rely on, and trust in Him.

    I will be in earnest prayer for your family - for God's presence to be felt in a real and powerful way by each one of you during each step of this journey you are on; for His peace and love to wash over you, especially in the really hard moments. I pray that through your lives and testimony, He will continue to be glorified.

    Fear not, for I am with you; do not look around you in terror and be dismayed, for I am your God. I will strengthen you in difficulties, yes, I will help you; yes, I will hold you up with My victorious right hand.
    Isaiah 41:10

    He who dwells in the secret place of the Most High shall remain stable and fixed under the shadow of the Almighty (Whose power no foe can withstand). I will say of the Lord, He is my Refuge and my Fortress, my God; on Him I will lean and rely and in Him I will confidently trust!
    Psalm 91:1-2

    Praise be to the Lord, to God our Savior, who daily bears our burdens.
    Psalm 68:19

    Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior.
    Isaiah 43:2-3


    A sister in Christ from Nebraska who loves you though we've never met!

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  30. Thinking of you all and sending much love XXXXXX

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  31. Hospice is a wonderful resource.

    I am so glad to hear that you are being offered so much help.

    I cannot even imagine having the conversations with my spouse that you have just described. Or with my children. It is apparent that God is giving you the strength to deal with a situation that is almost unbearable. It reminds me of a passage from The Hiding Place, where Corrie ten Boom's father explains to her that God gives us our "ticket" when we need it and not before. You are being incredibly brave and strong, and I pray that you get all the help you need in the upcoming weeks.

    God bless you, and God help your husband come to terms with what is happening. He must feel so sad and frightened.

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  32. Angie, one of the most striking things about you that I've always admired is your honesty with all of this. And your honesty with your boys. Crying with them. Letting them know that you are incredibly sad and not just the STRONG MOMMY WHO WILL GET THROUGH THIS. Of course, you WILL get through this and you have to be strong - and you are, but sharing your grief is so healing. And sharing it with Brian.

    I know this is very far in the future, but someday I hope you'll consider writing a book on this and you could use your blog posts in a compilation.

    Sending prayers always...

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  33. I am praying for you and your family. You have touched my heart.

    I understand your need to create memories and spend bonding time while you can. Something you can do together is record Brian (audio and/or video) for the boys. Reading, sharing family stories, telling them how he came to believe in Jesus and how much they mean to him. While Brian is feeling strong, he can do simple things that will become lifelong treasures.

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  34. Several years ago, I watched a good friend go through this same situation. Their kids were 5 and 2.5 when he finally lost his battle with the cancer, after a two year fight. Cancer is such and ugly, ugly thing, and no person should have to suffer through it, and no family should have to witness it or suffer themselves. My heart goes out to you and your boys. Warm thoughts and many hugs sent your way...

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  35. I'm new here, stumbled in via Twitter.

    All I can say is God Bless you and yours and that I will keep you in my prayers.

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  36. Praying for your family in Australia.

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  37. "Be still and know that I am God" Psalm 46:10

    This scripture has been given to me by God time and time again. I heard it again as I read your blog.

    May God continue to provide you with peace. You are doing a terrific job.

    A new friend in prayer

    Kim

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  38. you are amazing. you are a gift to your children. i am so sorry for your pain and brian's pain and grant and gavin. i admire your strength. i will pray pray pray for all of you. that you find peace. peace be with all of you.

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  39. I am praying for you and your family. Blessings to you all.

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