Thursday, February 19, 2009

summits

Brian has been doing extremely well lately. He definitely still has some memory issues, but they are getting much better. Now he can remember that he doesn't remember if that makes sense. He listens to me when I tell him why I am now in charge of his meds and why I don't like him walking up the stairs by himself and why he can't be alone in the house. As good as he feels and as much as he dislikes it all, he now understands how bad he was to warrant such "mean" inconveniences in his life.

The last few months to Brian are a bit sketchy in his memory. He can recall things if something or someone triggers his memory just the right way. So, when we are talking about something he doesn't remember, I will state facts about the event or surrounding circumstances to trigger his recollection. Sometimes it works and sometimes it doesn't.

We have had to have the same "why am I not doing chemo anymore?" discussion...again. He looks around at all that is going on and all the visitors and hospital equipment and feels like we are giving up on him... again. I have assured him we are just being prepared for the very drastic changes that we have seen can happen.

This is the third time we experienced Brian's transformation from his chipper self to a shell of a person unable to walk, move, speak, or think rationally and back again. His parents and I can't risk being unprepared emotionally, medically, logistically, equipmentally (like that?), etc.

The good news is that Brian has been feeling great lately. His appetite is slowly increasing. He is mobile and aware. He is involved.

I told Brian the other day I believe one of the reasons for this third scare - the third time we thought we were losing Brian within a week or two only to get him back again - is that God is trying to tell us something. I think we have been given this precious gift of time again and again to remind us that when it is time for Brian to go, he is not mentally "with it" enough to have certain conversations with him. I told him I thought it was time for him to start having those difficult conversations with people, especially his boys. The conversations in which the people want to share with Brian how he has touched their lives and vice versa. I know it stinks. I know it feels like giving up, but in the end, shouldn't we all be having those conversations every day? Shouldn't we all be telling each other how much we mean to each other? If someone impacts our life in a concrete, measurable way, why wouldn't we take the time to let that someone know it?

In truth, we are all living to die. Shouldn't we live like it?

KEEP BELIEVING

23 comments:

  1. "In truth, we are all living to die. Shouldn't we live like it?"

    Wow! So profound and so true. Thanks for this reminder.

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  2. Thank you Angie for sharing such wonderful words of truth. You are such an inspiration. I know you probably don't feel like it but you are. Thank you for sharing this journey with us. And know that you are prayed for.

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  3. So profound this morning. I feel like I just read a devotion. I guess I did. Yes, you are right, we SHOULD live like that. We just get so wrapped up in the details of life, that we forget to LIVE life. We get so wrapped up in DOING things for Christ that we forget to spend time alone with Him, actually getting to KNOW Him. Thank you for reminding us to love fully today.

    "He alone is my rock and my salvation;
    he is my fortress, I will not be shaken." Ps 62:6

    Janell

    Janell

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  4. Angie!

    Praise the Lord for His awesome goodness to you for these beautiful, fragile days. I am so thankful that God has answered my prayers for you to let Brian have peace again. But more than that, Angie, your response is an offering to Him of gratefulness and that is awe-inspiring. I am going to continue to pray for peace and courage for the days ahead. He is your strong tower, your heavenly Father who adores you and wants you to tell Him everything. I am praying that these days will fortify you for whatever is ahead--that Jesus will be so real that you will never be able to doubt for one minute that He carried you the whole time. Love you, sweet friend--Shawn from TN

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  5. Seriously, it is something that I try to remind myself of everyday! I am glad to hear he is having some good days. :-)

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  6. Your words really touched me. You are right, we are ALL living to die and we should let those around us know how we feel. Sending love your way.

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  7. Hi Angie,

    I am visiting from another blog and I almost didn't come because the memories your story triggers are very painful. We had a very good friend die from a brain tumor 4 years ago and coming here is like experiencing it all over again.

    I remember every single thing you are talking about like it was yesterday. I would go and get his son and bring him to our house in an attempt to keep things normal, but it really didn't work. I remember when our friend's vision went--that was a hard one. And then Hospice came with the hospital bed and it was like the final blow to what used to be a strong, healthy man.

    One thing I did want to say was his wife told me that they sat down with a tape recorder (not video camera--the steroids had made him look very different than normal--not the way they wanted to remember him) and recorded his thoughts while he was still himself.

    He talked about what he could remember of his past and how he hoped the future would turn out for his son. He talked about how much his family meant to him and how sorry he was that things didn't turn out the way he thought they would. His wife told me it is her most precious gift and her son clings to it still as a link to a dad. He also talked on there about what he wished for treatment when he was no longer able to decide for himself and how he wanted people to remember him. I don't know--you probably already thought of that, but I wanted to throw it out there in case you hadn't.

    At the very end he was bed ridden and they just all acted like it was normal to have a hospital bed in the living room and everyone sat with him on that instead of chairs. One of his greatest pleasures was having his dog up on the bed with him and his wife wasn't about to deny him that. He asked that he be taken off all medication and revealed that he actually felt guilty for that because he thought maybe people were thinking he was not trying hard enough to live.

    Once they took him off the meds that kept his brain from swelling it wasn't too long before he slipped into a coma. His wife called everyone together that was important in his life, everyone joined hands in a circle around his bed and sang praises to God as he headed home to Jesus. That was what he wanted and he actually said he was ready to go--he was so tired of fighting this crap on the earth. He just kind of disappeared from the earth, nothing violent or ugly.

    I think about you often, hoping and praying you and your sons will be O.K. It's really hard not to feel like you all got a raw deal, isn't it. God Bless you and your family. Kris

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  8. Have I told you lately how much I love you? I do. You're wonderful and I'm lucky to call you my friend.

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  9. That last sentence? Truer words could NOT have been spoken. A-men to that sister.

    Love, peace, strength - your way.

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  10. Here via Kim @ Jogging In Circles
    One more prayer your way today from my family to yours.

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  11. Oh Angie, once again you are so right and so insightful. We run our lives in a rat race, or on a merry-go-round, a rollercoaster or, as I think is my case, on a hamster wheel...never seeming to get where we want to be. The trouble with our thinking often tends to be that we forget who is in control - it is not us, it is our Heavenly Father and we need to get to where He wants us to be. Our ultimate goal is to join Him in heaven one day, yet we don't want to let go of what we have here on earth. There are a couple of songs that are coming to mind right now, I don't know if these are the titles or not, but the first one is, "Everybody wants to go to Heaven (but nobody wants to go now)" and the other one is, "Live like you were dying." The second song I mentioned really hits home what you have just said in this post. We shouldn't wait until we have situations come up like yours until we have special conversations with our friends and loved ones to tell them how much they mean to us. These should be daily occurences! You never know when you might be blindsided and lose a loved one when you never expected to and never get the chance ot tell them how much you loved them.

    Once again, Angie, thanks for sharing and for getting us to look within our own families and reminding us to cherish the precious moments of everyday that we have with our families.

    Still praying for you guys with all of my heart.

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  12. I think you are so right. So often we give these heartfelt eulogies at funerals, but why not take the opportunity to tell people what they mean to us face to face? And we should give them the gift of letting them say it back. What a hard and yet cherishable conversation to have.

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  13. WOW, WOW, Praising God for the gift of Brian doing extremely well lately. He is remembering more, eating better.
    Angie, these are the things called healing, the ones you have been fasting for. Answers to prayers, many times answers do come in very small packages, yet, many little packages make a great, enormous one. KEEP BELIEVING.

    Love you Marjo

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  14. You are amazing. What a gift you are giving to everyone around you.

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  15. EXACTLY you get it! You'll never be able to go back to a mediocre way of being or expressing yourself. The truth is we are all born to die, and we don't know when. It's just that you are all very focused on the preciousness of each minute of time, that truly is a gift. You go girl!

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  16. These conversations are so difficult but what a blessing to have the gift of time to do it. It's hard to do it and hard to hear it. But it just reminds us that this earth is not our home, we're just passing thru on our way to be with Jesus. I treasure the memory of my last moments with my father. I wish I could have them (and him back again).

    I am still praying and still believing for you, my friend.

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  17. Wow. What different priorities we would all have if we really did live this way.
    Peace to you.

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  18. God is working in you and your family to touch the lives of others through your amazing testimony and heart. Thank you for sharing your heart and life with us. My prayers are with Brian, you and the family.

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  19. "In truth, we are all living to die. Shouldn't we live like it?"

    You are absolutely right! Thanks for the reminder.

    Praying for you...

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  20. You make a wonderful point at the end there Angie. We should take more time to tell each other how much we mean to one another because who really knows how much time we have left? Not us....

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  21. i don't know how you know what you know.

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  22. Yes. Yes, we should. Thank you for the reminder.

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