Quick Wednesday Update

Brian first.

We got home from the hospital on Sunday and Brian hasn’t quite bounced back yet. At first I thought it was completely emotional. He’s been very quiet and withdrawn. He’s depressed, right? Who wouldn’t be. His mom was with him on Monday while I went to my biopsy and she just said he was very quiet. He was in the basement when I got home reading and doing calculus.

Yesterday he was just moving very slowly like he’s underwater. He’s been doing more calculus problems on the whiteboard. Its like his mind is a little bit jumbled, but he is such a smart guy and while it makes no sense to me I know he is trying to put his mind back in order.

Anyway, it dawned on me that we may not be looking at an emotional setback, to me this feels like tumor progression.

Its so crazy, because as much of a nightmare as this summer has been, as realistic as we are, hope is blinding. In May when he got sick again, it took me almost two weeks to realize something was really wrong. I just didn’t want to see it. This time its obvious to me and so I do what I always do and I called the literal best APN in the world and she took care of us. He has an MRI this afternoon.

As for my update, I had my biopsy Monday. I am surprised how fast it all came together. I am super grateful for all the help I had orchestrating that. It was an ultrasound guided biopsy and it didn’t hurt. I was also awake the whole time in spite of 5mg of Versed. They asked me if I take anything for anxiety at home. I said I have, but honestly, I am wound so tight right now you couldn’t believe it. So I listened and watched the ultrasound and learned a bunch of stuff. The radiologist mentioned that the tumors could be angiomyolipomas which are benign. He said they had a couple of the defining features so I am clinging to that hope until I get official results.

And maybe this is just me with my cynical hat on after the most horrific summer of my life, but hope it tricky for me. When you let hope in, when you really let it in like you’re supposed to, you leave no room for doubt. And when there isn’t room for doubt, it can be hard to see things as they really are. Its a delicate balance to find a way to be realistically hopeful. And in this dire situation we find ourselves in, ‘realistically hopeful’ is an oxymoron. Its much easier to hope for the best when you are standing on the outside of a situation. That’s why I am relying on so many of our friends and family to pray their hearts out for us. For those of us in the thick of it, right now, and maybe for the first time, its easier to be realistic. This is not to say anyone is “giving up” ( I hate that stupid cliche too), but its too much of an emotional roller coaster to keep hoping for things that may not come to fruition.

Where once I hoped for time, successful treatments, futures with all of us together, there has been a subtle, almost imperceptible shift to hoping for things like ease, peace, comfort, and grace. And I am crying as I type this, because even though it isn’t, it feels like giving up. But my heart is so unbelievable heavy, and sad, and afraid for us. For my children mostly, and for Brian, and for myself, and our parents and siblings. I can’t even find the words.

I always come back to this favorite quote:

quote-i-wish-it-need-not-have-happened-in-my-time-said-frodo-so-do-i-said-gandalf-and-so-do-j-r-r-tolkien-34-71-59

So please keep thinking of us. Keep praying and sending all kinds of good and pure energy. It truly sustains me in these dark days.

16 thoughts on “Quick Wednesday Update

  1. I’ve worked in the medical community for over 40 years and have seen firsthand many answered prayers and therefore I and my prayer group will continue to pray…and to hope.

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  2. Lindsey, Thank you for your updates. You have been so strong from the time of Brian’s diagnosis, for Brian and your children. Please know that I’m praying my heart out for you and your family. ❤️

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  3. I will keep praying ,because I don’t know what else to do. I can not identify with your circumstances But I know and trust the same God as you and even though things look bad (faith) we are going to keep praying.

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  4. You are not giving up. You are living life. And these shitty cards you’ve all been dealt. Hugs hugs hugs

    All you can do is ride the ride. Try to stay sane.

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  5. I do hope you’re mistaken about what Brian’s behaviors and what it could indicate. I’m also glad you were able to find some hope in your own health situation. I also think that ( and I could be wrong) that hope is a little blinding…..but with a great purpose for it. I don’t think we could sometimes make it mentally as far through a situation if we weren’t a little blinded, I know I couldn’t. Hope for me was a coping tool and a reminder that l am not in control, as to not take the bad news and internalize it. So please keep up the hope that you are both strong and will come out of this horrifying situation with nothing more than knowledge and bad memories and have the faith that God hears all your prayers and everyone else’s prayers for you. I’m still praying for all of you and wishing for the very best for you. ❤

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  6. Well,I for one see no one “giving up”. Hope is all you have at times,so keep your hope and do exactly what you are doing, fine tuning and tweaking your hopes. I was so happy to meet you ,sorry again for busting in on you, I truly couldn’t stand the thought of your Mama being alone with her thoughts. So Lindsey, one hour ,day or week at a time . No one appreciates life more than people who are facing the alternative ,whether its you or someone you love. Fear has no place where love and hope dwells, Cast your hopes AND fears to the winds, you never know where they will rest.

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  7. Lindsey,
    Just know that Janna and I offer daily prayers for you and your family. You were one of my very best student writers and babysitters EVER, so I know you have a sensitive soul. Only someone with your unique sense of empathy could be a source of deep strength for Brian. You are a very, very special child of God, and although you have seemingly insurmountable obstacles before you, rest assured He still holds you and your family in the palm of His hand. His ways are a mystery to us, but keep the faith. When things seem like too much to bear, know He is walking this path of suffering with you–at times (maybe all the time) carrying Brian and you and your family close to His sacred heart. We love you. Always.

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  8. I am crying right now as I pray for you and your family. I met your sweet mom only once when she came to our East Peoria home to look at a dresser we had for sale. We had an instant connection, if that is even possible, and became friends that evening. We didn’t have time to get together after since we were in process of moving to FL. But she shared and I have followed and I am praying for you all. I believe God answers. God bless all of you.

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  9. Just offering my prayers along with all others, as I know there is much energy when we pray together. I know your mom and I’ve heard so many sweet stories about your littles. My heart breaks for you and I have no words that make any sense, just keeping you all in my heart each day. I lost my husband 4 weeks ago today and I feel your fear and I completely understand your questions about hope. Just hold everyone tight and your love for each other will guide you. Take care.

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  10. Sometimes we think that hope is wishing away what we have, and wishing for something else. Hope isn’t looking for a different situation in life. Hope is finding whatever beauty can be found in the reality of your situation, and knowing that the pain will pass. Christ will take the pain and anguish and replace it with peace and comfort. That’s what He came to do. He knew life would be full of sadness, pain, and disappointment. So, He came, to give us peace. Elder Holland says it so beautifully: https://www.youtube.com/watch?v=9aAD1WSIPGQ
    I am praying that you can feel that peace.

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  11. Lindsey,. I did not know all of this was happening…I will put you and your family in my prayers…I do believe our area has a fantastic medical community….sending hugs, love, and hope ..

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  12. I hope you find some peace and comfort in this song💜
    I’m praying and encouraging you to seek God, for everything is for His glory!

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