Sunday, May 4, 2014

Keep On Keeping On

I apologize ahead of time for not having anything super encouraging to say. I'm just too exhausted.

Many people have asked how Ben is doing.

Ben is anxious. Really anxious. He won't let us out of his sight for more than eight seconds at a time. Especially Andy, who he has been holding hostage. Literally.

Andy is like a caged animal. It makes him crazy to be confined to a tiny space for hours at a time, especially when there is so much going on. Normally, Andy will spend more than two hours a day on the phone. It's just the nature of his job. Even though he has cut back work by 99%, there are still matters that require his attention from time to time. But Ben requires his full attention at all times. Even if he senses that Andy has left the room much less the house, he goes ballistic. If he sent him into the kitchen to get him some water and he can hear that Daddy has made a quick phone call during his focused errand, he goes crazy. There's no reasoning with him, either. It doesn't even matter that I'm still in the living room with him. He wants Dad. Now.

This, as you can imagine, is completely exhausting. For both of us. When Andy is confined to the couch with Ben, many times, he'll need me to run Ben's errands around the house. When Ben does allow me to sit with him for a few minutes at a time, Andy is the designated runner. There is literally no down-time for either of us.

Megan seems completely unphased by this whole thing. She's just so carefree and happy, playing by herself and wanting to spend hours of everyday outside catching worms. It's wearing on Jack, though. He wants to play hide-n-seek with Andy, wrestle, and to have him play in the backyard. Except he can't. Because Ben needs him. He's had many meltdowns about not being able to play with Daddy where I wanted to cry right along with him. Jack has always gravitated toward Andy, Ben toward me. So even though Ben has switched his sights to his dad, that doesn't meant that Jack switched his to mine. Andy does try and make the most of time during dinner and then movie night to talk with and play with Jack; that helps a great deal. But that's only allowed as long as they stay quiet enough not to bother Ben. I'm not worried about Jack in the long-term. He seems surprisingly aware of the situation and yet, not scared in the least. He has already proven to be a very resilient kid. I know he will be just fine. But I do feel bad for him as he navigates through these unchartered waters along with us.

Andy and I have sought comfort in the fact that Ben has still slept through the night, other than the occasional call for a bathroom break, giving us a few hours in the evening to catch up with each other, relax and get some rest... that is, up until three nights ago. That's when Ben started needing Andy's constant attention throughout the evening hours, too. Adjusting his legs, giving him another blanket, taking off his blanket, getting him some water, going to the bathroom. Every few minutes, there's a new request. And it makes for some very difficult worse-than-a-newborn kinda sleep.

Tonight, Ben called us up just an hour after we had put them down. We had been trying to clean the house and wrap presents for their birthday tomorrow, an event that both boys are extremely excited about. He wanted us to lay with him. Sleep next to him. All night. I thought Andy was going to burst into tears. He has dedicated every waking moment of every day to this little boy for the past few weeks and didn't think he could physically and emotionally handle the idea of 100% of his evenings going there, too.

I laid next to Ben and just cried.

That's a new skill I've acquired over the past few months: silent crying. I can sob and sob without waking up or even having someone next to me not even know that I am completely soaking through every piece of tissue I can find. The words from Mark Schultz's song, "He's My Son" kept playing in my mind, making me sob even harder.

He doesn't want to be alone. He can't do a thing by himself. We can barely understand what he's saying. He's scared. He's uncomfortable. It made me feel so incredibly sad, to think about my once self-sufficient four-year-old now having to rely us for everything. "I just don't want to have any regrets," I kept thinking. "Whatever happens, I don't want to have any regrets."

So when Ben requested that he sleep in our bed, Andy carried a limp Benjamin into our ever-shrinking king size bed, and I'm sitting next to him on my laptop. I'm actually surprised that he isn't bothered by my typing. And that he was okay with Andy finishing up a few phone calls downstairs before coming to bed.
 
I am not afraid of Ben going to heaven someday. In fact, it's just about the only real piece of comfort I have right now. I'm afraid of the road we have to walk until it's time.

Ben is awake for about eight hours a day. And for much of that, he's anxious about the next time he can go to sleep. It's hard to tell if his slurred speech and confused words are from the tumor or the fact that he is just so tired. It is such a difficult way to live, walking on egg shells so you don't unnecessarily agitate him or see that his siblings stay calm when they're around. Being confined to your own home as you just watch the rest of the world go on with life. Your old life.

I honestly don't mean to complain. I know there are so many people that have been asked to walk an even more difficult road, a much longer one. I really do try and stay positive (which is the biggest reason I haven't wanted to give an update on Ben.) Every single day, Andy and I talk about the things that God has done to bless us, even in the midst of such a challenging time. And we always have at least a few things to be grateful for. But this is just where we are right now.

My 90-year-old great-aunt died two days ago and I can't even be at her funeral. I haven't been to Bible study in months, play dates are too stressful for Ben to miss his siblings, and we need to limit the number of people (especially strangers) that come into our house. Birthday parties, celebrations and going to church are just out of the question. He can't sit up much less be in a car seat to drive anywhere, even if he wanted to. I miss our old life, our old routine. And so we sit. And care for. And cater to. And pray. And try and maintain some level of normalcy for our other two kids.

It is just so exhausting.

My goal for today is not to live with any regrets. No matter what happens, I want to feel confident that I did the best I could for my son and for my family. And for now, that means letting him sleep in our bed. Trying to be there for Andy when he's the only one Ben wants to help. And not getting too frustrated with Ben for what he has no control over.

In other words, I will keep on keeping on.

Even when it feels like we're living in a sort of Groundhog Day movie, replaying each day over and over again, I will keep on. Putting one step in front of the other. Trying to extend grace to Ben when he needs it. And keeping my eyes forward.

Tomorrow is the boys' fifth birthday. On 5/5. Their 'golden birthday.' A day we didn't even think Ben would be able to celebrate on this side of heaven. There two presents waiting for them downstairs that they're looking to open when it's daylight. I will take Jack to preschool to enjoy his birthday snack with his peers and then we will have just our immediate families over for a quick dinner and cake.

And I will go to sleep trying to remind myself of the fact that God has gone before us and He goes with us. God knew we would have to walk this road. And He promised we wouldn't do it alone. We just have to keep walking.

115 comments:

  1. Praying Mindy. As I look at my 4 year old tonight I am thinking of your two and their special day tomorrow. Praying for peace and rest for you all tonight and in the coming weeks.

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    1. My oldest daughter (1 of 4, she's now 8) went through a period of fear and anxiety. I would give her chamomile tea with fresh rosemary. You can put fresh rosemary in a tea ball with the chamomile tea bag. It was very refreshing, relaxing and calming. I turned into a night thing at bedtime. All 4 my children (8, 6, 4, & 2 are their ages) enjoyed the time to drink something warm and momma liked the health benefits. It was comforting for all of us. Blessings to you. You and Andy are doing great. So many values are being taught through this journey. Keep holding on. You are doing great :) Virtual and spiritual hugs for you.

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    2. Praying and hoping that the boys were able to enjoy their "golden" birthday. I pray for you and think about you and what you are going through, and I simply cannot imagine being able to share what you have shared if one of my children was terminally ill. Thank you for sharing your love of Ben, your family and of God. By taking care of Ben, you are taking care of Jesus, and I imagine there is great comfort in that.

      God Bless you all.

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  2. God Bless and Watch over your beautiful family. Tonight I will say extra special prayers for all of you.

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  3. Oh, my mother heart breaks. Praying rest over you guys tonight.

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  4. I'm trying to write this post through tears streaming down my face. I can't even begin to imagine what you are going through. Silent tears are always the hardest kind. I can't imagine how trying it is to be needed 24/7. You are such an amazingly strong and inspiring woman. I don't know how you don't go crazy being confined and watching life go on around you. Maybe try skyping in to bible study? I know it isn't the same but it just might help. I am so glad that Ben is making it to his 5th Birthday, that in itself is such a huge miracle! I found that talking to someone, anyone who has gone through a major loss earlier in life than they should have helps immensely. Something about hearing the words "I know how it feels" and knowing that they actually do truly know is comforting. It may not holo but you at least know you aren't alone in what you feel. I message you on Facebook and my offer is always there. Sometimes just getting the words out to someone and not having anything said back helps too. I'm sending you tons of thoughts and positive vibes and praying hard tonight that the boys have the best birthday ever tomorrow.
    Just know you never have to walk through this alone; be it with family, friends, God, or even strangers we are all here with you and for you.
    Samantha Scheffel

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  5. I'm praying that all of you sleep soundly tonight. My pastor's sermon this evening was on 1 Peter 1:3-12 and he focused for bit on verse 6 where says "In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials." His point was that as Christians we have the capacity to have great joy WHILE also great suffering -- it's not that God gives us joy and we're spared suffering or that we'll suffer and have to get through it before we reach the joy...but that we can mysteriously through Christ have both at the same time. It was a comforting passage for me to read in my own life right now -- and I will be praying that it is especially true for all of you tomorrow as well. May there be great joy as you celebrate with your boys in knowing that the God who gave them life 5 years ago is the exact same God now....and forever and ever and ever. Happy happy happy birthday to them both (and anniversary to you and your husband!)!!

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  6. Oh Mindy. As Olive is counting down the two days (now nearly one) to her 5th bday she still asks how Jack and Ben will celebrate their special day, one day ahead of her. Please know so many hearts will be celebrating the day with you all, even if it doesn't feel like the celebration you envisioned when things were "normal."

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  7. I said a short prayer for you and yours. You're allowed to complain, your path is one that I cannot begin to imagine. Please don't feel like you can't pour your heart out. You're a mom not a martyr. You're only human and you are weary. May you find strength and rest in the Father.

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    1. Agreed! Prayers for rest and comfort for you all. No other words can help, but know you are in everyone's prayers. God bless you with peace.

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  8. No words, other than praying for peace, comfort and strength. You are all amazing

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  9. Many Prayer's and Thought' your way!!
    My favorite saying " keep on keepin on " Sometimes all we can stand to do..One day at a time.

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  10. Happy Anniversary to you and your husband! Make sure you take a few special moments together. Happy Birthday to your beautiful boys-they are a "whole handful" now!!

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  11. You and your husband are wonderful parents and some of the strongest people in the world. I'm not religious but I find it admirable that you can hold onto, and even believe stronger on your faith now more than ever. I hope and wish Ben becomes more comfortable and your family finds some peace soon. Don't ever apologize for "complaining", you have every right to be mad/angry/tired/exhausted.

    Hope the boys have a wonderful birthday <3

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  12. praying for you all. easy to say but hard to do, 1 day at a time. one hour at a time. wishing Ben and Jack a super 5th birthday........

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  13. It's ok to let it out, your feelings. They need to come out. You can't go on without letting the screams out, the cries, the moods, it's being human. You are watching your child go through something you are not able to control. You are feeling powerless and it's not easy being strong all the time. But God knows this. He gives the hardest tasks to his strongest soldiers. Everything has changed, and change is hard on anyone. But your situation is yours. Although we all want to show you and your family support and prayer, we know you are going through an emotional roller coaster. You don't have to explain or post for us. If you aren't able to do it then don't. We will continue to pray for you, when you feel better just update us. No one expects anything of you, we are blessed to be apart of these times. Your family is in my prayers daily and with that said, get some rest you have a big exciting day ahead of you. <3 much love and prayers always.

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  14. Praying for peace and comfort for all of you during this extremely difficult time...

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  15. While reading your post tonight, I stopped midway through and prayed. The song, "Our God" by Chris Tomlin started playing in my head and the words have never meant more..."Our God is greater, our God is stronger, God you are higher than any other, Our God is healer, awesome in power, Our God! Our God! And if our God is for us, then who could ever stop us and if our God is with us then what could stand against?". I will continue to pray for your family because OUR God is HEALER and he is so awesome in power! I want to extend a hand to you and your family. I am willing to volunteer and help your family If you need an extra hand around the house, cooking, cleaning, playing with Jack and Megan, anything to help things be a little less stressful. If you would like to chat, feel free to email me any time. I don't want to post much on here but I just wanted to extend the offer if you needed it. I've known the Lombardo's for years so I hope I don't come off as a creepy stranger! Praying for you guys always ��
    - brittanyleighcole@yahoo.com

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  16. Happy Birthday Boys, we hope you enjoy your day together!! Silent tears, I have cried them for 3 years now, everynight, I hold my youngest baby and cry that her bigger brother has left us to be in heaven and I thank him and God that they gave us our Emma. Please cherish all the time you do have with Ben, I know that once he has gone on to watch from above, you will wish you had just one more of those exhausting days with him. You are definitely allowed to vent and not feel guilty about it and sometimes you just need to cry, from pain, exhaustion, overwhelming emotions, its human, you are all going through so much. Please tell the boys we all say Happy Birthday and I hope they have a wonderful day. Stay Strong :)

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  17. There's nothing wrong with venting! No one person is perfect and sometimes you just need to let it all go. Staying strong and positive doesn't always mean you can't break at one point and then minutes later out yourself back together as hard as it may be! I hope the boys enjoy their day, hope your anniversary is great, and even though you may feel your update on Ben isn't what some would like to hear, it's always great to hear he has blessed your family with another day and his cute little face :) happy birthday to Jack and Ben! Happy anniversary to you and Andy! I hope it's an amazing day ahead for all of you.. Hugs, prayers, and much love to all of you <3

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  18. Hello Mindy-my name is Laura and I've been following your blog via posts my friends shares on Facebook. We have three children and our oldest is our 5 yr old son. So to empathize with you on that similarity is one thing, but to even begin to understand what you and your whole family are going through is truly unfathomable to me. I just wanted to let you know that I believe every person is brought into our lives for a reason, and even if you and I never meet on this earth, you are my spiritual sister, and my heart aches for you! Praying for, for Andy, Jack (and our son's name is Jack as well), Megan, your unborn child, and precious Ben. Blessings-the Kauffman family

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  19. Oh Mindy, my heart breaks for you. While reading your post tonight, it was almost as if I were right there with you. I could feel your exhaustion and frustration. Even though you are always in my prayers I wish I could do more. I wish you and Andy a restful, less stressful day tomorrow. Congratulations on your 7th Anniversary. And of course I wish Ben and Jack a Happy "Golden" Birthday. Saying extra prayers for Andy tonight. God bless you.

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  20. Your cyber family loves you...we cry with you and pray so very hard for your miracle. If all 20,000 of us could join voices to sing happy birthday to your boys, we would. You have let us in to your life and the pain you are feeling. Know that complete strangers love you and we are uniting in prayer to continue to give you strength as you continue to put one foot in front of the other. Hold onto the love and purpose of God to continue to give you strength.

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    1. Beautiful image of the many that love you all singing and rejoicing over your family! How awesome heaven will be.

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  21. Mindy,,you and Andy are amazing ! Thank you for being so open and allowing us to follow you on this difficult journey. Your words just flow and they are so meaningful, because you are so honest. God has blessed Ben giving him such wonderful parents to care for him. Praying for strength, comfort and peace for your family. Happy 5th Birthday to Ben & Jack & Happy Anniversary to you and Andy !

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  22. Praying for you Mindy, Ben, and your family, words are so inadequate at this time. May you have peace of mind as the Lord holds you all in his arms.

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  23. Oh my sweet friend, don't ever feel like you have to be continuously encouraging and only post when you have inspirational things to pass on. We all love you guys and everyone who reads this would consider it an honor and privilege to weep and pray with you through the hardest times. We never stop praying and keeping our eyes on our heavenly home. <3 Kier

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  24. You continue to walk through these deep waters and allow us into your lives through your blog. As a mom and grandma, I can only try to imagine how incredibly hard this journey is for you and Andy, as well as your kids. I will be praying for strength for you and Andy - physical strength, emotional and spiritual. May you have a tangible sense of HIS arms wrapped, and carrying you. I hope that the boys have a wonderful birthday celebration. Very bittersweet one no doubt. We continue to lift you all before the throne of God! Sending love and prayers to you - even though we have never met - you all hold a very dear place in y heart and prayers. - Joy

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  25. We sit "in the ashes" with you Mindy, and you have given us all something more directly to pray about on your behalf. From the standpoint of bringing the rest of us "down," do not worry one iota about seeming negative. We are here to listen to and pray with and for you!

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  26. One of the most difficult things about being a caregiver is understanding one's limitations as a human being. In most situations one is reinforced by the care they've given and in knowing that their loved one is content and at peace, but when they are not content and in fear, that's when things start to feel overwhelming. It seems as though no matter what you do, nothing seems to help. All one can do is cry at that point. Stay strong in the Lord's strength. You're going to get through this. He is right there with You - He will never leave or forsake you. That is His word.

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  27. I wept tonight reading the blog. Been reading and praying with you for months now. Praying for you in church this morning..this is the scripture that came to my heart for you. (Below) My dad died of GBM tumor 14 years ago..and we were all very weary when he did go..but we know..he was healed by all we poured out on him. YOU ARE helping Ben heal by what you are doing..even if his physical body perishs...the
    inner healing of the soul is occurring now. I am lifting you up daily.
    Hebrews 12:12-13
    (NIV)
    12 Therefore, strengthen your feeble arms and weak knees. 13 “Make level paths for your feet,”so that the lame may not be disabled, but rather healed.

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  28. My Kindergarten class is praying for Ben. I am praying for you and your family. What an amazing testimony you continue to share. I am convinced that either God chooses the superhero strong in the faith believers to go through trials like yours..knowing they will give Him the glory...or He truly does just give so much more grace as the burdens grow greater. Thank you for proving that it can be done. I cry with you every time I read your updates. Your situation has truly touched our hearts, and I hope it helps even in a slight way to know that your sisters in Christ are lifting you up and crying out to God for you and your precious boy.

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  29. Happy cinco de mayo to Jack and Ben! It is my birthday today as well. Your family is in my prayers daily.

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  30. Happy 5th Birthday Ben and Jack-5 years old on 5/5! Happy Anniversary to you and Andy as well. May you have a Blessed day filled with God's grace and peace! I hope you can find some comfort in knowing how much love and how many prayers surround your family. Although we may not be able to help you on this journey, we can surround you with prayers! Wishing you all a very special day and keeping your family close to my heart!

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  31. It's ok for you to be feeling what you're feeling. Don't let anyone tell you differently. Even if you don't share it with anyone, it's ok to be feeling all that wrong and frustration and weirdness. It's ok to miss the "other life" you would be having, the way things where

    I hope you have someone that you can open up about all the weird inner thoughts that go on in your head. I hope Andy is like my Jon, letting you really "snap" when you need to, really vent when you need to. I can't imagine the pain you're going through, I've never had children, let alone lost one. But I am an ear if you need to get it out.

    I feel for you so hard, I feel the anxiety through your posts. I wish I could do something, but all I can do is offer a non-judgement ear to listen if you need. *hugs*

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  32. My 5 kids and my wife and I pray for y'all and little Ben at every meal and each night. Your faith and endurance are such a blessing to all of us. You remind us that we do not sorrow like the world which has no hope. My particular prayer tonight was that God give y'all and Ben a peaceful, comfortable fun-filled joyful birthday celebration tomorrow.

    “The Lord bless you and keep you;
    The Lord make His face shine upon you,
    And be gracious unto you;
    The Lord lift up His countenance upon you,
    And give you peace.”’ Amen.

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  33. Sending prayers, hugs, and much love to Ben, you, Andy, Jack, and Megan.

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  34. Asking God to give you strength. God bless all of you. You are all in my thoughts and prayers every day. I only wish I could do more.

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  35. Happy Birthday to Jack and Ben!
    And happy Anniversary to you and your husband. I have been reading your blog for about a month now, wanting to leave a note every time, bit I am afraid my words are too shallow..
    Mindi, I can´t describe how much I am touched by the pain your family has to go throug. You are such a wonderful and strong woman and great mom! I wish I knew a cure for your lovely Boy. I just read an article about a Girl with his type of cancer (so I think) and her recovery, so I leave you a link to this:
    https://www.facebook.com/BrainCancerCure/posts/496058340469043 . I know you must be bored of people trying to sell you a "magical cure", but I would feel bad not showing you, if there maybe is a slight chance..
    Otherwise, I am praying for you and your family. Hoping you can enjoy this day somehow.
    Sending all of you a warm hug from overseas!

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    1. http://www.cancer.duke.edu/btc/modules/Research3/index.php?id=41

      I'm not sure Ben would be eligible to take part, unfortunately. It would be worth contacting them though.

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  36. Prayers for your walk and throughout this journey beyond my comprehension! Your faith is so powerful.you are so inspiring I hope you can feel the strength of others and their faith in you

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  37. While reading this, I couldn't help but think of the Casting Crowns song "Praise You In The Storm". Here is the link. I pray God continues to give you strength and that you continue to Praise Him in the Storm!
    http://www.youtube.com/watch?v=uHdcyue0bSw&feature=kp

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  38. I don't know you, we've never met but I love you and your precious family. I love your honesty and your rawness. I love that through this blog you are sharing with the world this difficult path and how you are leaning on Jesus to take the weight of this struggle. Keep on keeping on, mama (and dada). You will have NO regrets on either side of heaven. Just know, this stranger is praying and crying along with you!

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  39. I pray for your family every day. There are no words to express what I feel when I read about what your family endures on a daily basis. I have 5 kids, one who is turning 5 this month and I look at him and try to even imagine what you feel when you look into Ben's eyes. Your faith is so strong. It's beautiful. I will continue to pray for your sweet boy and for your family. Happy birthday to Ben and Jack! I hope they have a very special day.

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  40. Mindy, I pray today that God will go before you to clear your path, walk beside you to lift up your hands when they hang down, and walk behind you to cover your back. May He be to you what you need Him to be at this time...

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  41. "For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
    Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
    Ephesians 3:14-21

    My heart is breaking for you and your family. Praying for all of you

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  42. Mindy, my husband and I are praying for you. So many people are praying...upholding your beautiful precious son, Ben in constant prayer. You remind me of a warrior who is battle weary. That's ok, because you have many battle buddies who have your back (my son is in the army). You are doing a great job. You are giving Ben exactly what he needs....YOU. " The Lord your God is with you, he is mighty to save. He will take great delight in you, he will rejoice over you with singing." Zephaniah 3;17 Love and prayers, Melinda

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  43. Happy Birthday Jack & Ben and Happy Anniversary Mindy & Andy. Our thoughts and prayers are with you. Hugs n' Stuff, Lynne

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  44. Happy Anniversary Mindy & Andy! God has blessed you with an amazing love for Him. We pray for all of you daily! Happy Birthday Jack and Ben!

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  45. Happy Birthday Ben and Jack!
    The sun is shining just for you today!!

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  46. Okay I am almost sure you've thought of this but just in case- I am an RN so I have to mention that I hope you have the strength to be absolutely clear with Ben's doctor how bad the situation is. You are both doing a wonderful job, but sometes extreme stress makes us lose sight of other options that might help. A palliative care nurse could brainstorm a few ideas or maybe the doc could adjust his medication.
    I hope you have a wonderful day today with your boys on their birthday and get some respite soon.

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  47. My struggles are nothing compared to yours with my special needs boys but the "Keep on Keeping On" seems to be the mantra for trying circumstances. That, and holding on to the faith with a "White Knuckle Grip". Don't ever let go and let Him comfort you with the unexplainable peace that only He can give when it seems impossible. I am praying for an extra special blessing for Ben today so that he can have some peace too to help settle his anxieties.

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  48. Happy birthday boys! My thoughts are with you, as I also celebrate mine today. Sandra

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  49. "My goal for today is not to live with any regrets. No matter what happens, I want to feel confident that I did the best I could for my son and for my family" --- You ARE doing your best and you always have. ♥

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    1. Happy Birthday Ben & Jack ☺

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  50. I know this sounds silly but I feel like your family is part of my family..so I send my love and blessings to you and the children..God bless the whole family! I hope you all have a great day on this 5/5...Love and prayers are with you always....Linda

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  51. May you all relish God's blessings today, on 5/5, your twins "golden birthday"!!! Our family continues to pray for each and every one of you. Happy Birthday Jack and Ben! ;)

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  53. Mindy I have never met you but I was introduced to this loving family by my cousins Chuck and Cheryl Nagel. I check facebook, looking for and almost dreading, your blogs. You are never ever complaining you are explaining what is going on with Ben and that is what everyone that comes to this site wants to hear. I have had a few tears every time i hear about dear Ben's struggle, but today I sobbed like a baby. I watched the video, listened to the accompanying song He is my son, and prayed for you all especially you and Andy. You are so strong and there is nothing you will ever have to regret. Be strong, especially for Andy, the love of your life and soul mate. We are all praying for your whole family but special prayers are being sent out for you and Andy. I hope that sweet sweet Ben Fiends the peace that he so needs and a very happy Birthday to the special young men in your family and a very Special Anniversary to you and Andy. God bless you all.

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  54. I'm setting some time aside in my day to pray especially for your family, Mindy. I've never met you, but your posts remind me that we are all a family of God. I'm a mommy too, and I cannot imagine the pain of your experience, not to mention navigating a pregnancy in the midst of this trial. I pray that you and your precious family have a wonderful birthday celebration. Love to you!!

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  55. Happy anniversary Mindy & Andy, and happy birthday Jack & Ben! This is the day that the Lord has made, to be so-very-special for your family! I pray you continue to feel & note God's blessings on you individually and as a family.

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  56. Our God who is in you and working through you is unbelievably humbling, encouraging, and truly inspiring. I cry to think of our little buddy Ben being in this condition. I pray that he would not suffer. In pray for strength, patience and peace above all for you and Andy. Mindy, thank you for sharing through this journey with us. Thank you for your vulnerability! I now know how I can be praying for you and your family.
    Happy Birthday to two amazing 5 yr. old boys!
    Happy Anniversary to one super adorable couple!! I love your story how you and Andy met. Thank you again for sharing!!
    <3<3<3 your sister in Christ, Nellie

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  57. As a mother of 4 I remember how emotional the 5th birthday was (for me!) with 4 healthy children. You have been an incredible example of faith and strength throughout this battle. Today it is my prayer that God will give you and Andy peace beyond all understanding, glimpses of hope, as well as comfort and rest on this special day for all of you. Also praying that both boys will have some moments of feeling special today.

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  58. I have a friend that called me and just wanted to pass along a pastors name that maybe you could look up some messages and she says they are encouraging. Not many details were given but wanted to make sure I passed it along..his name is Andy Womack....

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    1. Hi Melissa,
      I also posted a link to Andrew Wommack Ministries. He has many encouraging sermons on healing. I hope some how Mindy will be able to get to his website. It's not a coincidence that we both are recommending his ministry to her. God bless you!

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  59. Mindy and Andy-
    We're continuing to pray for your strength and patience thru this time. We know the end goal is in Heaven, but today's path is still very tiring in so many ways. Anita and I have done something similar, twice, and can readily relate to you. It's obvious our Lord is sustaining you, and He is faithful, - - - thru the valley - - - .

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  60. May you all enjoy this wonderful Birthday. I so admire your strength..
    I cry at each of your writing...and pray for all of you.

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  61. No words can say how my heart breaks for you and your family...praying for your Peace.
    Happy Birthday Ben & Jack!! <3
    Happy Anniversary Mindy & Andy!! <3

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  62. Happy Birthday Sweet Ben and Jack!!!

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  63. Happy 5th birthday to Ben and Jack! And happy anniversary to you and Andy!

    I've been praying for you guys!

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  64. Been following your blog via a friend who posts the link on facebook when you update it. My daughter turns 5 on the 6th. I pray for you often. Thank you for being so transparent so that we can pray better for you and your family. Thank you for showing Jesus to the world through this tough time in your life!

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  65. God has given us patiences, love, kindness. Emotions as Humans, feelings that basically make us who we are. Mindy & Andy, my prayers will stay with your family, forever, even after God's intentions I will always keep your entire family in my prayers and heart. I hope today is a blessed day for Ben & Jack--- Happy 5th Birthday, & to you & Andy Happy Anniversary. Blessed are the days you still share together, I pray for God's kindness to the entire family. Amen

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  66. Wishing you and yours a comfortable, restful and easy day of celebration for your anniversary and for your twins' golden birthday, and peacefulness as you keep this vigil.

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  67. Your strength and courage are amazing and your faith impressive. No regrets is the way to go. Happy birthday to your twins. I hope is some happiness today. I pray for your family

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  68. Have you heard about the PH miracle diet? It's about eating LOTS of raw green organic food.. Lots of veggies. No sugar no breads very little meat. If you cant get the book ....There are websites where you can learn which foods are acidic and which are alkaline. Feed him lots of alkaline foods and have you tried sitting him out is the sun? Please look into the PH miracle diet. May God bless you all.

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  69. My own 4-year-old Ben turns 5 in just 5 days. Thinking about our Bens' close age always brings your situation even closer to my heart. I am praying that today - your Ben's birthday - will be a very special time for your family. And I am praying for strength for you and your husband to keep carrying on.

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  70. I shared a part of your blog with our SS class when I taught a couple of weeks ago. One of the things I wanted them to hear was how you praise God IN the storm. I am listening to Laura Story's song "Blessings" right now while praying for your family.

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  71. I'm praying for you little Ben, I too have a 5 year old boy named Sterling. Sterling prayed a long prayer for you all this morning and I'll be lifting Ben and your family to the Lord all day. My heart hurts over this. I'm sorry for your sadness and exhaustion. God isn't the one inflicting this sickness, we have a good God! It's never too late for a healing! Hugs and prayers, ~Hannah~ P.S. please look up www.savedhealed.com for some scriptures on healing! Happy Birthday boys and Happy Anniversary to you and Andy!

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  72. You're sitting there, doing the best you can... but suffering in so many ways. We walk around, living... praying that it doesn't happen to us. Who's the hero, Mindy? The crowns in Heaven waiting for you and Andy, there is not room for. I can't end this note with "hold strong", because I realize I can't possibly know what that entails. Just know, you are loved and constantly thought of. Xx

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  73. Happy 5th Birthday Ben & Jack!!! Happy Anniversary Mindy and Andy!!!! You are surrounded in prayer.

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  74. Don't ever feel like you are complaining. Not many people could handle this situation with the grace that you have. Happy Birthday to Ben and Jack! I hope it's a day to remember.

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  75. Happy Birthday Ben & Jack! May the peace of Jesus surround each and every one of you! <3

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  76. Happy Birthday Jack & Ben <3 I'm praying for you...

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  77. I am so thankful The Lord let us cross paths, be it via internet. You have shown me what true mama's love is. Your honesty in the everyday trials and praises have encouraged me so much. I haven't been down the path you're going down but I'm praying along side you and your family. You have opened my eyes to the sovereignty of my mighty God that I just haven't noticed before. I just thank you for sharing your life and your burdens so we can know better how to pray for all of you. We are lifting you up in prayer and love your family.

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  78. Isn't it absolutely amazing what it costs in terms of time, energy, effort, emotions, physical and psychological presence to care for someone who is incapacitated? For someone who has never taken care of a gravely sick and incapacitated person, it cannot be imagined.
    I hope you are laying hands and praying on Ben, for healing, that the cancer be cast out, but also for peace; that God take away his anxiety and fill him with the peace of the Holy Spirit.
    Dearest Jesus, lover of souls, comfort Ben in his anxiety, and heal him from all illness; cast out this cancer from this child, but if thou will not, then bring him and overwhelming peace and comfort, so he may not suffer. Comfort his mother and father, and bring them also your peace. Overwhelm this faithful family with Your love, so that they may not feel alone and overwhelmed at this most desperate time.
    God's peace be with you. Happy Anniversary. Happy birthday Ben and Jack!

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  79. Happy 5th Birthday Ben & Jack!!! What a big day for you both and Happy Anniversary Mindy & Andy. There's not much more I can add to all the beautiful posts above me. The Sauer Family is loved and held up in prayer by so many people, many strangers who learned of your story and feel your heartbreak. I hope today there will be some smiles & celebrating....no regrets. As parents, you two have taught me so many lessons. Enjoy your special day doing the best you can. That's all any of us can do!

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  80. My heart goes out to you Mindy. Have you thought of a Care Facility? This road you and your husband are going on is far too much for you. Love you Mindy, and still praying for you all!

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  81. My mother has brain cancer, so I can understand a lot of what you are going through, although I think it is entirely different when its your child. So many people don't understand the illness and how hard it is to keep going when the person you love is so dependent, needy and different. They gave my mom 6 weeks to live, its going on 6 years that she's been fighting. It is a blessing but an exhausting blessing. There are times I get so tired of the new reality and the demands that I just want it to end, but then I feel guilty because I know there is only one way it will end. Its also hard because I feel like I have been grieving my mom for so long, even though she is still alive. But God is good and His mercies are new each day. Praying for a lovely and memorable birthday celebration for everyone.

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    1. Jennifer,
      I know a little of what you are going through. We (my brother and I) have been caring for my mother in her home for 15 years after a stroke left her incapacitated. I know the "exhausting blessing" and the knowledge that "there is only one way it will end." I will pray for you. I promise.
      Someone recently shared with me a reflection on Simon of Cyrene, who, exhausted after a day's work in the fields, was suddenly and unexpectedly thrust into the job of carrying the cross, and even physically supporting the badly beaten Man who was going to His death. Reflecting on this, and that Simon's is one of the few names remembered in the Gospels, has given me strength.
      Bless you. Continue to pray for Ben and for Mindy and Andy. You know better than most of us what they are going through.

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  82. I don't know you sister, but I'mloving on you and your family in prayer, right now. You guys are not alone. Thank you for being brave enough to share your struggles with us.

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  83. God will see you through, this you know. I can't imagine the pain you are all going through. Writing is very therapeutic and you do that well. My heart breaks for you but it also allows me to pray for you. We don't know each other but we are sisters in the Lord. Thank you for sharing your journey with us.

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  84. My heart is breaking for you, but I too know that we serve a great and wonderful God and He will have his arms around you all.......ALWAYS!!! God bless you all!

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  85. I can't tell you what an inspiration you are Mindy. Yes, God has given you a share of his cross but you are carrying it so courageously. Your sharing is helping countless people, most of them unknown to you. My husband and I pray for you all every night and will continue to forever. God bless you dear lady and your beautiful family as well. Happy Birthday to your adorable boys.

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  86. Mindy and Andy, Happy Anniversary!! and Happy Birthday Ben and Jack. A double blessing and what a great Lord we have to have carried your family this far. Mindy, I wanted to share with you my emotional experience as Mom as well after listening and watching the video of Mark Schultz to He's My Son. I too, as a mother of two boys and yes, they are a blessing. I broke down in tears because that's how I would feel about my children when they get hurt or to go through what you are. I hope you know through this tireless effort that both you and Andy are blessed and to keep holding on to God's word. I know its hard at times - but we will reap the reward in the end. We are teaching our children in Sunday School this month about 'Endurance', to persevere and to not give up.

    We pray for your family everyday as well and wish you all the best.
    Sophie

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  87. Praying with love from Ohio... <3

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  88. I've felt that feeling Ben is feeling right now not wanting to have his dad leave his side. When our family walked through a dark valley, I felt it too. I am thinking of that song "Even though I walk through the valley, it's only a shadow, it's only a shadow" So I loose peace, comfort and rest to fill Ben and rebuke all fear in the mighty name of Jesus Christ. May the Joy of the Lord be your strength. He can heal the deepest of hurts. I speak Joy Joy Joy over your whole family. May the Holy Spirit fill you all with his amazing grace and strength.

    In Jesus' name

    Lori

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  89. Please, please, please do not ever think you are complaining. You are pouring your heart out, in need of strength and endurance. Your road is long and painful, and you are one person who is needed by many. You have needs as well, but they must be put on hold, and that is a difficult thing. I do hope your church family has stepped in to help, and that you are accepting that help. I don't know you, but I love you and your family and have been praying for them. I do hope the twins' birthday was a special one.

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  90. never apologize for being honest. The Body of Christ wants to stand with you. praying

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  91. I don't know if you have time (or energy) to read these comments right now, but I pray that the energy and agape love going into them will sustain you until you can read the words -- and that the words will then bring comfort and encouragement.

    You are keeping on. Just keep breathing. In and out. Through tears and laughter and the ache losing your son and the guilt of wanting it all to be over and the fear that in the next minute it will be. You are so loved. You, your boys, your girls and your husband. There isn't a think I can say that you do not know -- but I just want to remind you that many brothers and sisters in Christ are holding you, praying, crying and laughing with you and walking down this road as best we can beside you. Just keep breathing.

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  92. Happy, Happy Birthday Ben & Jack! ...and Happy Anniversary to you!! Praying for you and thinking of you all daily...for peace, patience, and that His strength and love holds you each and every moment. Even through these great and unimaginable struggles...you are blessing others around you. His love is truly shining through you. xo

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  93. I have spent the last couple of hours trying to to string together words that would somehow bring comfort, hope, peace. Years of work as a pediatric oncology nurse provide nothing of any value. Even my role as a surviving sibling of a brother lost to childhood caner leaves me vacant. Because each experience is uniquely tortuous.

    I am so sorry for this pain. I do not know your pain, but I know of this pain and it is unbearable. I will tell you though that there is life after this. My family has managed and we are stronger, closer, aware of the harshest realities life has to offer and more patient, empathetic and loving because of it.

    I can tell you that Jack, Megan and baby girl #2 will be okay. Because they have strong parents who are raising them in love, joy and faith. This past April marked 46 years without our David. What is always remarkable to me is that while I remember (mind you I was just a bit older than your Megan) a dark time, but my childhood was filled with joy and happiness. My parents grieved openly but always, always kept David in our family. We celebrated his birthday every year...still do all these years later. They never shied away from us asking questions or allowing us to feel this deep, deep loss. They allowed us to play with his toys. Kept his pictures out plainly visible despite being told to put them away and move on as if he never was (1968, what did the experts know then). All these years later we have another David, born to my younger brother exactly 27 years to the day that he died.

    So why do I share all this. I hope, I pray every day that this gives you a glimpse into life down the road. That you can see hope. That you know your babies will know laughter and happiness and that their future will be filled with good things And more than anything that Ben will never be forgotten. Oh I believe in a God of miracles. I have seen them. I cared for a beautiful 14 month old little girl who we sent home in relapse with no expectation that she would survive. She is 23 and recently got engaged. She is the picture of health. Oh yes I believe in a God of miracles and pray one in Ben's life every day. But should our deepest desires not come to bear fruit, I pray you know the hope of a future filled with joy. There will be a lifelong ache, but as my mama says it won't always hurt so damn badly.

    Happy Golden Birthday Ben and Jack. God's continued blessings on your family. May Ben know peace and comfort.

    "Against all hope, in hope I believe..." Romans 4:18

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  94. Dearest Mindy,
    Thank you for sharing your story, allowing so many of us to have a glimpse into your life. I have been following your blog and praying for your beautiful family for several weeks.
    I'm apologizing in advance for throwing in my 2 cents. A stranger shared this link with me when I was ill with a horrific disease, http://www.awmi.net/extra/audio/i05, my illness wasn't terminal but very debilitating and chronic in nature. The link is an audio of scriptures on healing being read by a heavenly voice with comforting background music. "So faith comes by hearing, and hearing by the word of God." I admire your faith and your trust in God even in the midst of your pain. Perhaps Ben, you and Andy will find hearing the scriptures comforting as I did.
    For those of us who are following Mindy's blog can we come together and bombard heaven with prayer at 7 am and 7 pm? Praying in agreement for Ben's healing, freedom from pain, discomfort and anxiety. Mindy and Andy: strength to get through the day, one day at a time, and for peace that surpasses all understanding. Family: The Holy spirit to dwell in the midst of their home and all will feel His presence. " I also tell you this: If two of you agree here on earth concerning anything you ask, my Father in heaven will do it for you." Matthew 18:19

    Happy Birthday to Ben and Jack! Happy Anniversary Mindy and Andy.

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  95. You and Andy are both only human. Be kind to yourselves. You can only do so much. Prayers for comfort, peace and understanding coming your way. Bless you and your sweet husband for being selfless and for hanging in there.

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  96. I know you are exhausted and that adds to what you are going through. Here are a few things that I have kept in mind when going through the toughest times. Paul writes in 2 Corinthians 4:17-18 For momentary light affliction (Paul's afflictions were not light and neither are yours!, but he viewed them that way in light of eternity) is producing for us an eternal weight of glorify far beyond all comparison, while we look not at the things which are seen, but at the things which not seen; for the things which are seen are temporal, but the things which are not seen are eternal. When I remember that my time on Earth is just a tiny blip on my eternal timeline, it helps to get through the toughest of times. And, when I think ahead to heaven - - Oh glorious day! None of this there! Also, remembering that Christ has been through everything we have and promises to never leave us, we can draw comfort from Him. Praying that you feel the "when I am weak, then I am strong" soon.

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  97. You and your husband are incredibly courageous and inspiring. Praying for comfort for Ben and peace for your entire family.

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  98. Love and prayers for all of you these hard days. Hugs too.

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  99. Please don't feel guilty for how you are feeling. I think it is completely normal. It must be so hard to see your sweet little boy struggle and there's nothing you can do to help him. You feel bad for your other two children--normal! You want "normal" back--normal, and I'm sure God understands all of the emotions you are dealing with. I pray you continue to feel His presence surrounding you at all times.

    God Bless,

    Janet
    COLE'S Prayer Team

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  100. I lost my mom to GBM about 2 years ago at 51. I can't fathom going through it with one of my children. For the 13 months she was ill- I repeated the same exact thing you said- I didn't want to have any regrets. So for 13 months, I drove myself & 3 kids back and forth 6hrs each way 2 weeks on/ 1 week off as school allowed and then my youngest and I were there the entire last month...and I don't have any regrets. The brain tumor/decadron combo is evil and it changes their sweet spirits..and it is devastating in the moment...and your heart cries out to God for their relief...for Him to take them home...and when He finally does- you will scream that you want them back...it's a journey that no one should have to endure. I pray that God gives you peace and super-natural strength & joy...and please know you're not alone on the wonderful, horrible, treasured, evil walk towards Heaven with your sweet Ben.

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    1. I often wonder if God, sometimes, "allows" us extra time with loved ones so that we are grateful for their pain to end, rather than takiing them from us so quickly that we would instead be angry....

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  101. Praying the Lord carries you through this difficult time--I think of the Footprints poem. God bless!

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  102. I love you all and pray for you all every night before I go to sleep...

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  103. I'm so sorry you had this happen to you. I wish he was a normal little boy, I would take on the challenge instead of you.

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