Wednesday, May 7, 2014

What Life Looks Like These Days

If I could sum up our parenting philosophy in just a few words, I would say it is to "parent on purpose."
 
As a teacher, it was helpful to know what information was on the exam before you built your plan for the year. Before you created the fun, side activities, you had to know what information your students would be tested on at the completion of your course. I've used this same guideline when supporting my children's growth. To do things with the 'end' in mind.
 
I wouldn't let the boys watch television until they were two years old because I wanted them to develop their sense of imagination and play. I would let them paint with their hands, play with dry pasta and use markers because I wanted them to be able to concentrate on one thing for an extended amount of time. I let them play with Nerf guns, butter knives and scissors because I wanted to be the one to teach them how to handle them responsibly. I had an idea of the kind of adults I wanted my kids to be and then I have tried to create an environment that made those transitions easier.
 
But, as you know, the last few months have rocked our world in many ways.
 
We used to eat dinner at the kitchen table. No one ate until we prayed and then we'd try and use that time to talk about our day, how we should eat at the table, how to ask for more, how to react when you're not hungry. When they were done, we'd encourage them to take their plates to the sink after they had been excused. These days, we eat in the living room picnic-style so Ben will not be alone. Even though we have a little table for Meg and Jack to sit in, it is nearly impossible to keep them in their seats (especially since Meg's current chair does not have a buckle.) We are constantly picking up spills, the carpet is a mess and they cry when we don't let them watch a video at the same time. We are done when we just can't handle the craziness anymore.
 
We used to have movie night once a week. Every week, we would choose a movie ahead of time and then on Friday night, after an early dinner and a bath, we came back downstairs to watch it together with popcorn. These days, we have movie night every night of the week. The boys don't have a workable system for deciding who picks which movie they watch each evening and so verbal warfare ensues. Ben usually wins, just because there is absolutely no reasoning with him these days. Jack bounces from couch to couch and Meg runs circles around the house as Ben yells for them to be quiet. It is so commonplace now that it lacks its old specialness. Try taking it away, though. Not worth it.
 
We used to only watch one video in the morning and perhaps another one in the afternoon so I could make dinner. We had been determined not to give our kids access to their own technology so they would turn to other creative means of play. I always wanted to give my kids enough options of things to do, but also allow them the opportunity to be "bored enough" to just pick up a book and start reading. My kids behave better when they have less access to things that simply entertain them. These days, our television is on almost the entire day. Between videos, Netflix, and the Wii, our electric bill is higher than it has ever been. We also have been gifted two iPad minis, a purchase we never would have made for our kids under normal circumstances... but these are not normal circumstances. When you have a child in your house who cannot play or run around, these activities are his only options. And how do you restrict access to just that child - especially if he is a twin? "Sorry Jack, but only Ben can do these things because he is sick and we don't want to do anything to upset him." So everyone watches more television. And it is never ever enough.
 
We used to have more structure in our house. Now we all need to be flexible. At every hour of the day. We all need to be quiet, not touch Ben's couch, and to take special care not to do anything to upset him.
 
The tumor, the cancer, the medication, all of these things have changed a lot of things in our house over the past few months. Especially Ben. He used to be so compliant, easy-going, and non-confrontational. Now he is anxious. Nervous. Irritable. And uncomfortable. We've been working with his doctor to get to a better medication schedule so his side-effects are better managed. All of this puts an extraordinary amount of strain on a young family.
 
There is no spoiling a child with cancer. It is not weakness to give into his demands. You want spaghetti at 6:30 in the morning? You got it. You want to watch another movie, your third of the morning? No problem. You want me to make more snickerdoodle cookies? A McDonalds cheeseburger? You'll have it within a few minutes. And since this is all done in front of his two siblings, they get it on the action as well. I wish there were things we could do to encourage more structure, more predictability. But those things are just not high on my list of priorities right now.
 
They'll be a time for the clean-up. For picking up the pieces that have been so decidedly scattered every which way. But now is not that time.
 
The last few days have been especially difficult for us. Emotionally and physically. As I mentioned before, Ben has been very irritable and we have been trying to experiment with the dosage and frequency of his medication so he is more comfortable.
 
For their birthday, Ben cried in pain after requesting we sit him up to open his presents. I held up each gift so it was within his view, knowing there was little chance he would be able to use the super soaker or the fishing pole he received. He couldn't blow out his candles because of the angle he was laying, even when we tilted the cake on its side and just inches from his mouth. When the noise in the room got too loud, he made everyone leave the room. I cried. I couldn't help it. And I couldn't stop either. He had been so excited to turn five years old. And now he couldn't even enjoy it.

 The theme of the boys' birthday party was "silly string." I thought that was appropriate.
 
 
Andy has been putting off work and the dozens of phone calls he should make because he is required to be at Ben's side every moment of every single day. Poor Andy has been a hostage in his own home. He cannot go to the bathroom without Ben's permission much less leave the room. He requires his daddy's presence all throughout the day. His comfort. His strength. Being 21 weeks pregnant, I have much less strength than I normally do and Ben feels more comfortable with Andy adjusting his body or picking him up to hold him on the toilet. There are only a few minutes of the day where he'll settle for Mom's company so Andy can run an errand for him or perhaps take a quick shower.
 
Last night, Andy drove to the city to get a few things done after the kids had gone to sleep. He could have never anticipated the fact that Ben would wake up less than an hour later. And... want... only... him. I went in to give him a drink of water, to help him urinate in the cup, and then he wanted me to adjust his body to the side. He was frustrated that I couldn't understand his slurred speech and was not doing what he wanted. "Can you just have Dad do it?" he asked in frustration. I tried to avert the fact that he was twenty-five minutes away. But ultimately, I had to tell him why Daddy couldn't come up and help him. And he went nuts. I texted Andy, who left immediately, but then I had to sit with an anxious Ben for almost a half-hour as we waited for his rescuer to return. Oh, my word. Pretty sure I aged about two years during that ordeal.
 
Yesterday, Andy and I decided we ought to order a hospital bed to give him the flexibility of movement. His back is just so sensitive and propping him up with pillows has proven to be very difficult. It arrived today. I don't think I was ready to emotionally handle that delivery.
 
All afternoon, I couldn't get ahold of myself. The tears just flowed and flowed. I would blame it on the pregnancy hormones, but even I know that's not entirely true. The last time I saw a bed like that, we were at Children's. I slept in one just like it in the ICU, for nights on end, next to my son who was all connected to wires and cried and cried to go home. All of that came back when I saw it again. All the pain and uncertainty returned. And it hurt like crazy.
 
I'm grateful that we can be home. I can't imagine Ben being in the hospital. Traveling to and from the city multiple times a day, trying to field all of the questions from Jack on why he can't come home, why he can't see him, or taking turns with Andy, spending the night. I can't even imagine trying to comfort Ben and sustain the rest of our family through something like that. I'm so grateful to be home. And even though Ben gets really irritated at times, I know he is grateful to be home too.
 
Andy and I have been crying a lot. Especially at night when we have some quiet moments to ourselves. This road is so much harder than we could have anticipated. It's difficult to think about the possibility that this is what my son might have been created for - to bring people to Jesus, to reaffirm people in their faith, to bring hope to a desperate world - when he hasn't even entered kindergarten. That is both humbling and hurtful.
 
I am not scared about the destination. I have never been more confident about our future in heaven. Just the journey getting there.
 
So I guess we will have to continue putting off our desire to create structure and life-skills into our kids for a while longer. Even though it goes against every bone in my body. There will be a time for that, just not right now. I will continue to take one day at a time, taking advantage of the grace God has set aside for me for each day. And relying on God's strength to carry us through. Because He is more than able. And no matter how dark the road feels at times, we will make it to the other side. By God's grace.

108 comments:

  1. There are no words I know to say to you right now. You are just an incredible Mother and wife that is going through what has to be one of the worst things a mom could possibly experience. I continue to keep all of you in my prayers and ask God to please keep bless and keep you in the palm of His hand.

    God Bless,

    Janet Inman

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  2. Praying for you sweet momma. I'm just so sorry that you have to endure such heartache in seeing your innocent, little boy so uncomfortable. You are a blessing of a mother. I hope to be more like you with each passing day. Praying for you, Ben, & your whole family. ♡

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  3. I am without words....however my prayers continue daily :-)

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  4. Mindy I am still praying that it is Ben's destiny to bring people closer or back to God by showing us a miracle. I will not give up that prayer.

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  5. You are a phenomenal mother. Thank you for sharing your journey. I am praying for you, your husband and children tonight.

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  6. We all will keep praying. Tell Ben I love him. The miracles are amazing.

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  7. Praying for you so often every day. I found myself while walking through the garage today praying for you and all I could utter was, "Grace, grace, grace...." Thank you for the update and for being genuine, yet full of faith (even though you might think it is little faith).

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  8. Mindy, please know that you are all in our prayers. I pray so hard for Ben's pain to ease up. And for God to give you the strength you need for that new life that is growing inside your tummy. May God watch over you and your family. Hugs from a Grandmother in Ohio.

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  9. The BEST thing we can do for you is continue to pray, we just can't stop our hearts from wishing we could do something more...

    Our hearts remain with Ben and your whole family.

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  10. Praying for you all, MIndy. Peace for Ben, instead of anxiety, in Jesus' name. Thank you for sharing, to encourage us in prayer.

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  11. You WILL make it to the other side. God is with you, and you know it. It IS hard. When reality barges in, like the arrival of the hospital bed, it can jar us out of a temporary comfort we have found in the present status quo. Don't make too much of it.
    But you will see, the hospital bed is going to make it a lot easier to manage moving him, bathroom him, get him comfortable, raise his head (or feet) to eat or watch T.V. or just talk to everyone. And he can still get well. He could still receive a miracle. So don't give up hope yet.
    When structure goes the sense of control goes too. That's what makes this so tough. But you can establish some other clear routines, and you will.
    I continue to pray for you: for patience, and for a release for Ben from his anxiety. He's so little.
    Constantly praying for Ben's healing, and his regaining of health. Praying for peace for all of you.
    God bless.

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  12. May the peace of Christ dwell in you - may you know the touch of love in every part of your being. Holding you and Andy - and of course Ben and the children, in my heart. Grief sucks - it really does.

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  13. Thank you for sharing your heart and your family. I have cried with your posts, laughed at some of your stories, and loved the pictures that you have shared, but mostly I pray and ask why? You are an amazing mother and and ever inspiring child of God. You make my path with Him stronged and I thank you for that. I just wish it were under different circumstances, that God would heal Ben and make this all a bad dream.
    My prayers are with all of you.

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  14. Mindy, even though it may not feel as so in the midst of this storm YOU have been a phenominal testimony! As a mom my heart cries for you and with you daily. I just cannot even imagine being able to live out such strong faith. My entire family is holding your family and especially Ben in prayer. Thank you so much for sharing your thoughts, cares, heartaches and Faith for all who read your journey. Prayers for strength both physically and emotionally as the road winds more.

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  15. Mindi I am praying for your family. Please, please, please call Hospice. They can assist you in ways at home you can't imagine. I think is not a surrender. It may free some care giving energy to use for mom and dad energy. They were amazing with my mom in love. And all in her home.

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    1. Excellent point! Even palliative care, if that is what they call it in NY.

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    2. We have been working with Essential Care, the children's version of Hospice, ever since Ben was sent home a few months ago. They have been very resourceful.

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    3. May be they could help you with getting something for Ben's anxiety....it would be helpful for you and him...Prayers for you all as you walk this path together.

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    4. Deborah Johnston, sometimes the anxiety that Ben is feeling is strictly related to the steroids he is taking. For all the good they do, the side effects of the weight gain and fat deposits in areas that fat is not normally placed (like the back of the neck and ofcourse the face and upper body, while leaving your legs weakened and muscle wasted. It causes it's own frustration for that little person inside that body suit that just doesn't fit him anymore. If you think about the many frustrations he feels, plus the tumor pressing on areas that probably cause personality changes, Ben is simply not the young man you knew. But he IS the young man you love. I don't believe for a minute that he is abusing the attention he's getting from mom and dad, because his mind is not thinking the way he used to..it's to be expected. When he is causing you to become frustrated too, look at him as if he were a favorite photo in a frame. ...and think to yourself, I love you. Say it out loud, "I love you". Look beyond the disease and see the Ben of the earlier pictures. I trust you can do it. And we will pray for your patience and Andy's smiling face when he least feels like it.

      http://youtu.be/FlDUkp1Ts8A I hope this song comes through as it is meaningful in both ways for Ben and Baby Sauer. Amen

      I

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  16. Dear Andy and Mindy, I have read your blog posts for weeks and share each one on my Facebook page. I have prayed and prayed for you and your family and especially Ben. I have drawn strength and comfort from your suffering, which makes no sense to me. I just want you to know that I am praying in Cleveland, Ohio... May you find rest for your souls and peace in your hearts as you trust the One, the Only One, who can meet you in the deepest part of your pain and can understand more than you think. Love in Christ Jesus, Dottie

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  17. May God's Grace rain down on your family and wash away the tears for what is lost, but fills you will thankfulness of what He has given today. You are in my prayers for strength. And I am holding you all close to my heart.

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  18. You are doing a great job. You are navigating impossible waters. You will be able to bring your family back to its next "normal" eventually. But right now, 6:30am spaghetti is the most awesome parenting there is. Your sensitivity to ALL your children's needs is so admirable (even your swimming 21 week-er!). Silly string cakes with their names in candles?! You rule! We pray for you and all your sweet family daily. Courage. And bravo!

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  19. Mindy my momma's heart weeps for you and you are in our families prayers. My 9 year old son especially prays and asks about Ben every day.
    I will never forget driving to the hospital on July 4th 2000 to retrieve a bedpan for my mom (age 61) who had become paralyzed from the chest down due to a tumor on her spine. I wept the whole way as fourth of July fireworks and celebrations were going off all around me. It was surreal and reality had sunk in that outside of a miracle of God my momma was going to be going home to see her Savior. I look back on that season and realize how present the Lord was to me. It is very evident that He is walking with you and the precious life growing inside of you, Andy, Jack, Meg, and Ben..
    My comfort during my moms sickness was found in Psalm 73:23-26,28 "Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. As for me, it is good to be near God. I have made the Sovereign LORD my refuge; I will tell of all your deeds."
    Trusting that you are being held in the palm of His mighty hand!
    All our love,
    Sherrie

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  20. I hope that you writing these updates is helping you. And I hope you know that all of us strangers out here are reading them with true sorrow and love in our hearts. I'm terribly sorry that you and your family are dealing with this. But your strength, wisdom, and true humanity are more inspiring than you could ever know. All my good thoughts

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  21. You are amazing! Such strength you have to get through each day astounds me! I dont know if I would have that in me if it were my child. And such devotion to your family and to God. I pray for you, and each member of your family, that you all continue to have the strength and grace to get through another day. God Bless you all!

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  22. There are GREAT life skills that are being taught to your kids through this. Your Faith in God, reliance on Him, and God's strength to get you all through this are an invaluable lesson. Granted, by no means am I trying to correct you. ;) Since I have no kids nor wife, I wouldn't dare argue with you. Having to totally scrap any plans must be frustrating. Just want you to know that I am so amazed and encouraged by how you all are handling this. Thanks so much for sharing!
    Much love and prayers. You guys and God are AWESOME!

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  23. Your world has turned upside down, even the simplest things are no longer simple and the big things have become too large to manage. You and Andy are emotionally, physically and mentally worn out. You're faith and trust in God is beyond amazing. He is with you and your family Mindy. As have said many times, He gives you strength. I can't imagine having the courage you and Andy possess. Courage comes in pieces..as you need it. One step, one day, one moment at a time. Jesus knows you by name, He stands beside you in your agony. We have all fallen in love with you, Andy, Ben, Jack and Megan. Everyday our voices cry out your names to God. May you feel His peace.

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  24. peace....
    praying for that miracle, hoping without end. You are all loved

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  25. My heart goes out to you as a mother and I admire the courage and strength you have to live each day to the fullest with your children. I think of your family often. My daughter, who is 11, and I pray for Ben and the family every night before bed. May God bless you and carry you in His hands, and may you find comfort in knowing that Ben is loved by many in WNY.

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  26. As my heart aches for Ben, Andy and you Mindy... I continue to pray for a miracle from God. . That He may be gracious enough to answer our heartfelt pleas. . May God bless you all...

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  27. I am so achingly sorry. God bless your beautiful family.

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  28. I love you! You all are receiving Grace. I will pray for Ben because he is a beautiful gift from God ..and to you. I do not pretend to understand. XO

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  29. I can't stop crying either. My heart aches for you and for Andy.

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  30. This may sound crazy, I know you have a lot of advice or ideas given to you, and I don't want to sound rude, but what about using a boppy pillow or something similar or a huge fluffy bean bag to get Ben all comfy?
    So glad that the boys were blessed to celebrate their birthday together :) god bless you and your family in hopes of brighter days of peacefulness <3

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  31. By the way, Jack and Ben look really happy in your photo <3 :)

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  32. I am praying for all of you daily, many, many times a day.

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  33. Your a great mother and ben has a great father. I will continue to keep your family in my prayers. Keep being strong!!

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  34. I don't know how you do it Mindy, I fall apart just reading your posts. You may never realize the huge impact you and your family have had on so many people.

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  35. I cannot read your words without tears. The Spirit of God flows in you and through you. Thank you for writing.
    My church family in PA is praying for your family - especially for Ben.
    Peace of Christ.

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  36. Your strong faith, and strong character, is amazing. I the face of the most heart breaking ordeal, your family, continues to stay together, focused on the only thing that truly matters at this time. the comfort and care of sweet Ben. I pray for Ben and your family every night. God Bless.

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  37. Be easy on yourself Mindy. You don't need to be strong, or the structured parent right now. It isn't possible. You are all up against something almost all of us cannot fathom. The human expectations of child rearing and family activity cannot apply. God does not judge you for these things you've had to change. They are worldly and not of his expectations. I am praying for not only Ben and your children, but praying that you and Andy can find solace in whatever way you can. Love to you all.

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  38. As a father of 4 boys and a daughter, I can't imagine what you are going through but your faith is amazing. You are an awesome testament to what we can accomplish when the strength of our Lord and Savior is upon us.
    It is difficult to imagine that this is part of His great plan, but there is so much we don't see or understand.
    I once was told, "you show me a worm that can understand a human and I'll show you a human who understands God".
    Some things we just have to accept and believe He has a greater plan in action.
    Praying for you as always.

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  39. Lord, I pray for this family, shelter them and let them take refuge beneath your wings. Praying for Ben, please touch this little boy and heal him completely. I pray for a hope and a future for him. Hear the prayers of your people pleading for the healing of this precious boy. In Jesus name!!!!!

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  40. YOU ARE SUCH A STRONG FAMILY WITH A TRUE HERO FOR A SON ~ BEN {AND HIS BROTHER}....PRAYING FOR ALL OF YOU ~ <3

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  41. Prays for you and your family each day. Through God's amazing love, Grace and knowing your every thought he will carry you and Andy through this journey. One day at a time.

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  42. I am so sorry that you and your family have to go through this heartache. Everything that you decide to do at this time is the right thing to do for your family. Always remember your a wonderful mother and you will never look back and regret a moment of all this. Prayers to you and your family Mindy.....Happy Birthday Jack and Ben.

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  43. MIndy...as a teacher and a mom I so relate to what you're saying about thoughtfully allowing access to technology for your children and I know what you're doing now, though necessary and completely reasonable would be hard for me too. But you should remember what you and Andy are teaching them now instead. You are both a model of compassion for Jack and Megan (and the rest of us!) and though "the rules" might be flying out the window now, don't lose sight of the things you are teaching them. Though this time is a blur to all of you, how you have painstakingly cared for your son who is gravely ill will always be a part of your family's story. I hope you continue to find strength to bring comfort to Ben and to Andy. God Bless you.

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  44. Have you looked into Essential Care? They are in existence specifically for this purpose - to help families in your situation. They are part of Buffalo Hospice. I lost a sister when I was 8 and there were no such services then. They help the whole family with this situation - not just the sick child. Please at least look into it. You have a parent's ultimate nightmare going on right now and I can't even imagine dealing with the chaos that is in your home.

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    1. Yes, we have been working with EC ever since Ben was sent home. They have been a very valuable resource.

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  45. Hold on to ALL God's promises for He will see you through and give you the strength you so need . Uplifting you and your entire family in prayer each day as you write and spread the GOOD NEWS of God's plan of salvation as Jesus, His Son also suffered so we might have LIFE eternally with Him. That's the BEST gift of all for Ben this birthday - being wrapped up in Jesus' arms. May God continue to give you His peace not as this world experiences. You and Ben are touching so many lives! God is our Heavenly Father- the Best parent- who shows us how to LOVE. Keep on loving Him and Ben! That's the BEST you can do through Christ who strengthens you!

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  46. My heart breaks for you all. I can't offer words to you, there are none to give for this grief, but I can stand in the gap at this moment and pray for you all. And will do it more than I have.
    Thank you for letting us in so briefly to know how to pray and for continuing to fight the good fight. Just the few words you have expressed here tears my heart, I cannot imagine the constant of it.

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  47. You write so beautifully and your love for the Lord is so very apparent even through all of your pain and suffering. I am half way around the world and I want you to know I weep with you. I continue to pray for your precious son. Don't worry about structure and all those other things that we as supermoms' like to have control of. Embrace each moment with Ben. Stay strong and lean on each other. No regrets...no guilt! You are touching so many lives...May God, the Almighty Physician touch and heal Ben! Hope you are feeling the prayers. Hugs from London!

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  48. There are no words... I will continue to hold your family in prayer for your journey ahead. Hugs for you Mama <3

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  49. Praying for you dear sweet momma and family...You are such an awesome servant mom. Thank you for sharing your story!

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  50. I was lying next to one of my sons on May 5th (I have twin boys as well who are almost 3) and silently wishing Ben & Jack a Happy Birthday. Tears are streaming down my face as I read your blog entry today. There are no words to take away your pain. I pray every single day for God to spare Ben on this Earth, cure him of cancer, and let him stay longer. I pray for strength for you and your family. I will never stop.

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  51. I hate this for you - I hate it even more because my family is going through/went through the same thing. No little kid should have to endure cancer. I'm so sorry

    www.in-due-time.com

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  52. I have seen your story several times, although I have read it again and again it brings tears my eyes eveytime. I have a young family of my own and I cannot imagine going through everything you have gone through you sons are amazing! and special! and so are you! I no child should ever half to go through this let alone the parents watch, I say a prayer for you every day and pray for you and your family and sons. may god bless you! stay strong sweat momma!

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  53. I read this with tears in my eyes. For all you are going through with your precious little boy. As a Mom it is unimaginable to me. I am a believer, yet I still have to ask God why. I thank you for your strength to share the privacy of your life with the world. I pray for strength and peace for your family as you go through this journey. I pray for peace and comfort for Ben. God bless you all.

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  54. Dear Mindy,
    I just wanted to pass this on to you. There has been some evidence that one of the active ingredients in marijuana has reduced tumors size in cases of brain cancer. A form of marijuana has been developed in Colorado for children with extreme illness. It is called Charlotte's Web and it is extremely low in THC, the part of the drug that produces the psycoactive effect. Please don't take this suggestion the wrong way. I've been reading your blog and my heart breaks for your family. I hesitated to send you this idea, but I would beat myself up if this is something that could help but I didn't send it to you out of fear that you wouldn't like the suggestion. Many prayers for your entire family!

    http://www.cancer.gov/cancertopics/pdq/cam/cannabis/patient/page2

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    1. I hope Mindy has a moment to read comments on her blog. This is an excellent suggestion, there are many here and as a mother I wouldn't be offended at all. Perhaps she will be led to the comments today.

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    2. Just about anything is worth trying if there is a chance it could help.

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    3. I really do hope with all my might that they are able to give alternative medicine a try...I'm sure she is grateful for your suggestion. We all care and only hope for a beautiful miracle for lil Ben through God's angels and all that is heaven sent...

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  55. Thank you for the updates, I don't even know you and as a mother I find you and your family so heavy on my heart and pray for you often, I thought of your boys many times on Monday and hoped they were having a good birthday. There are no words, just praying for you and for God's cont. strength and light to shine on you and Andy, and of course Ben.

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  56. I have been reading along and following your journey since you started blogging about Ben. I am so sorry that you have to endure this painful road. Your family's resilience is awe-inspiring and your unwavering faith in God is both admirable and thought provoking. I pray for your family every day, and I truly hope you get your miracle - however it may appear. God bless you all.

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  57. Sending prayers to you and yours and for healing for Ben. I am an identical twin and my heart aches for both Ben and Jack. There is nothing like the bond of a twin and I pray for the peace that passes all understanding for both of them as Ben goes through this. May our Great Physician and Healer bring healing to Ben. Know you are in our prayers. I don't know you, but I want to send you a Virtual Hug. Know you are loved.

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  58. Mindy,

    I don't know your family but I have been reading your blog for a while. My husband and I have been praying for your family. We have had the experience of being trapped in our own household. We used to say that our family was being held hostage by our sick child. I would compare it to a tornado where my family was being struck with debris and we would try to remember that was only a little bit of what was happening to our sick son who was stuck in the middle of the storm. There are no words to tell you that would mend any hurt. This is your pain and no one can understand what is happening in your home and what you are living 24/7.

    I do want to encourage you to continue writing. You are so wise and gracious in your blog and we feel some of your pain. You have opened yourself to a world of prayer warriors who are lifting your family to our Father daily. When you don't feel the strength to pray or find yourself too angry with God to pray, know that others are standing in for you. Continue to extend your graciousness to yourselves. Every decision you make right now is the best one you can make. As a teacher you know kids, they are resilient and will bounce back when the time is right for them to have order again. We are praying daily for miracles in your home.

    your sister in Christ,
    Darla

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  59. Mindy, Hugs and prayers to you and your little family. I want to encourage you and your husband to remember to keep holding on, not only to God, but to one another.I know that is so hard right now. I know Ben takes all your time and everything you are doing is right and good. But, reading this entry made me recall when our son, Nathan, was in the PICU the first three months of his life and not expected to pull through. I was sobbing one day after leaving our Nathan's bedside when Ruben (my husband) turned to me and said. "I love you..You still have me. I'm still here."..At the time I did not fully understand his comment but now, years later, I understand better. My husband was reaching out to me in his own way saying "WE are in this TOGETHER. I'm here and I will always be." It was (and still is) a beautiful gift, marriage, friendship..someone to hold on to on this earth during the storms of life. I am praying for all of you. Don't ever give up. -Melinda Clark (Ohio)

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  60. May the Grace and Peace of our Lord Jesus Christ, keep you and sustain you through this horrific time. I still pray for you throughout the day....and I know if Jesus says so, Ben could totally recover. At this point in time, it seems to me that no one can possibly know the agony of your situation....know that hearts are loving you and praying for the Lord's will and blessing for your whole family all the time. This is WAY beyond our ability to understand. I pray for special strength, and blessing each and every day.

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  61. Mindy, I have been reading and praying from all the way over here in New Mexico.
    As to the "life skills" your children are learning, they seem to be plentiful. Not the least of which, a response to "Whatsoever you do..." as Jesus directed. Probably just about the most important lesson and skill there is, to sit and watch and help, at the bedside of the sick and suffering.
    With prayers for peace and strength and hope and faith for all of you,
    Claire

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  62. When I read this I'm struck by the idea of having to live just in the moment you have right now...that's all you have...I guess really it's all we really have...but especially faced with ever-changing situations that's all you can do. You and your family and most especially Ben are an inspiration to me...though I honestly can say I hate cancer and I honestly don't get why it happens to kids...watching you, your faith and hope is inspiring though I'm sure you'd rather not be inspiring and be back to normal. Your 4 kids are lucky to have you as a parent.

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  63. Dear Mindy,
    I'm praying you will be led to read many of the comments here today. No doubt you are being bombarded with people who are offering suggestions. There are so many resources available to you as you walk this excruciating journey. It does not mean you have lost hope if you contact hospice or Make A Wish Foundation. Kevin Sharp, the country singer who died recently, met the record producer who helped launch his career through Make A Wish. He was in high school at the time and recovered from a rare form of cancer. I only mentioned Mr. Sharp because he was a recipient of Make A Wish who recovered. You and Andy are doing so much to minister to Ben. Perhaps a friend or family member could make calls to Make A Wish, etc on your behalf.
    You and your beautiful family are in my thoughts and prayers, especially Ben. I am praying he will be anxious for nothing, free of pain and discomfort and above all that God will heal him just as He promised. Hugs from California.

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    1. Thanks, we have been the grateful recipients of Make-A-Wish already, and we have been working with Essential Care (children's version of Hospice) ever since Ben was sent home. We are so grateful for the many resources available to struggling families like us, organizations that help distribute HOPE.

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    2. That's good to know. I do apologize for throwing in my 2 cents. Also good to know you are able to respond to some of the comments. Mindy you truly are an inspiration. Praying God will move in a miraculous way today.

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  64. Mindy, your blog posts so often remind me of the Psalms. They are real and honest about the pain and the sufferings in this life, yet they always return to God, to praising him for his wisdom and strength and power, even in painful situations. Thank you for being willing to share your journey and bring glory to God through it all. Praying for your family in California.

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  65. Maybe a visit from a therapy dog could help ease some of Ben's anxiety. God Bless. You are all in my prayers.

    http://www.nbcnews.com/#/health/cancer/puppy-love-study-tests-power-dogs-against-cancer-n99651

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  66. Sweet, strong, loving Mindy!! You and Andy are the most heroic, loving parents I have ever been had the privilege of "knowing". Although you feel as though all the structure, life lessons, etc. are not part of your lives right now....you are teaching your children resilience, flexibility, faith, & love in the face of adversity! Ben and all of your family has been a part of my prayers daily...sometimes...many, many times during the day. Ben is an amazing solider of the Lord's....bringing many, many, many, souls to him through this terrible road he is asked to walk. And you & Andy are walking besides him, courageously, sometimes...falling apart....but, always walking it with Ben! God is so proud of all of you!! I am praying daily for a miracle for Ben. You have taught me through your sharing this hard road you are on, that our children are truly on loan to us. I raised my son & daughter on my own when my ex husband became too abusive. My daughter at the time was 6 months, my son 4 yrs old. Many times I felt as though I couldn't find the strength to go forward and worried that at times the structured life I so wanted for them was many times "craziness" because of having to work sometimes 2 jobs to feed & clothe them. In spite of the the "craziness" they grew up with the knowledge that God was the head of our family and would always be there to help us get through anything. They are now grown, and living a happy, successful life. And although they now live out of state, there isn't a day that I don't think, worry or miss them. That is the part of being a mom...we never stop being a mom!! I cherish the times we do now have even more. So in spite of the "craziness" that at times the 3 of us had to walk through, they turned out great. I say this to let you know, that although there isn't the normal structure that you are used to having as a family....you all will be fine because Jesus is there in the midst of the "craziness". We never stop being a momma, no matter how old our children are...just like Jesus never stops being our father. Know you, & Andy are doing an amazing job in the "craziness" and that many prayers are going up for Ben to be free of pain, anxiousness, etc and for rest for you & Andy. You are all so loved!!!!!

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  67. Dear Mindy,
    Structure just "looks" different at every point in our lives. You got this mom, because God is doing the building, and you believe it ♥+ I wish Ben and your family some of His peace today ♥+

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  68. Praying for you all to be filled with the love of God and the hope of his promises. Most especially I pray for peace and joy even in the midst of this hard thing. I just want to reach through the computer and give you a big hug. All of you.

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  69. Such a hard journey. I lift you in prayer often. May you find endurance and strength in Jesus.

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  70. I come into agreement with you for healing. God's Word says, "Whatever you bind on earth shall be bound in heaven and whatever you loose on earth, shall be loosed in heaven." I bind up that tumor in Ben in the mighty name of Jesus and bind up every cancer cell in Jesus' name. We loose healing to flow to every cell from the top of Ben's head to the soles of his feet. "That which God has not planted is dissolved and rooted out in Jesus' name. We speak "Life Life Life" to every fiber of Ben's being. Mindy and Andy are strong in the Lord and the power of His might. Holy Spirit we ask that you would bring comfort to the Sauer family. We pray for supernatural rest, peace and strength.

    Lori

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  71. Praying for your comfort and Ben 's too. Don't worry about structure. You just spend family time with your kids. The job you two are doing is incredible. I admire your courage and strength.

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  72. You are wonderful parents..I lost my little girl nearly 50 years ago--I still weep at the fact but now my Husband- her Daddy is there too-- so I now cry alone knowing that one day God will call me home--guess my Mansion is ready yet God Bless You all

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  73. I don´t know you but I ache with you and yours. This is a broken world we live in, but please remember that God is rescuing and restoring. Lean on Him. Do cry. Don´t let go of the only one who knows how to put the pieces together. Praying from Ecuador!

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  74. I am putting you, Ben and your family on my prayer list, praying for peace and comfort for your sweet little guy and knowing as a Mom I can't imagine or give you any advice I just wanted you to know that there are people out there who don't know you or your lovely family but I are praying none the less. Sending big blessings from Texas!

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  75. Mindy,

    Your strength & faith has brought all of us closer to God! We continue to pray for you and your family. Often my girls and I want to visit and offer help, but hold back because we're strangers. You have opened up your heart and shared with us so many private moments... I want to reach out and help. God bless all of you & continue to give you patience, strength and courage.

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  76. What you may lack in structure, you're more than making up for it in showing your children what it means to love and care for someone, to be a true servant, and to make each day count. Bless you and your precious family as you accompany Ben on his journey.

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  77. I read your blog often. I cry and my heart aches. I try to understand why you and your family have to endure this. It is something I will never understand. I have learned to appreciate life more and to be nice to everyone always because you just never know what they are going through.

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  78. Oh, Mindy, you and your husband, Andy, are such good and loving parents! You are parenting with your hearts, and with God in your souls, and that is all that matters. "Be still and know that I am God. I am the God who loves you. I am the God who heals you. You are my children, and I am with you ALWAYS!"

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  79. Your journey is an incredible inspiration.Thank you for showing the world how to keep Christ in the center of your marriage & parenting. Praying for you all, for your peace and rest. Praying also for Ben's comfort.

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  80. I am so sorry. Why you must go through this, I don't know. God will use this for good. Suffering is never wasted. Praying for you all.

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  81. First time commenter - and I have no words. None. I lost my son 2 years ago in a fire so I understand what it is like to lose a child. I honestly don't know what is worse: losing them in the blink of an eye or watching this kind of slow decent into hell. My thoughts and prayers are with you.

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  82. May God bless you and your family today and always. May He keep you strong in your faith. You are all in my thoughts and prayers. Anne O'Toole.

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  83. i know the situation isn't the same, and my brain surgeries never involved cancer, but i have experienced a lot to do with pain management. have you guys tried using both long-acting AND short-acting medications at the same time? even if it's the same medication, it did a WORLD of good for me. you can have a long-acting medication (meth@done, oxyc0ntin, time-released M0rphine, etc) which is taken around-the-clock, usually every 8 hours, regardless of how you feel. it takes a couple days to build up in your system, but then it's always there and should take away a lot of the pain. then, there's short-acting (regular perc0cet/oxyc0done, regular-release Morph1ne, etc) which you take when the pain starts to break through, for immediate relief. given Ben's prognosis, there shouldn't be too much worry about long-term problems such as addiction or dependence, or damaging his brain given that the cancer is already there. those things would usually prevent a doctor from wanting to take this approach with a child, especially one so young who has so much development still ahead, but in Ben's case it's worth a try.

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  84. Dear Mindy, You are persevering through, and that's what counts. As I sit and read, and am allowed a glimpse into your life, fresh hot tears are here again. I am a mother of six. Early in our marriage, my husband and I sacrificed everything possible to raise our beautiful gifts from God. We would shoot these arrows out, and He would get all the glory. Just reading your wonderful insight, ideas and schedule that you can't keep right now :( races my mind back to the good old days of my story. I had abundant faith and zeal, with a plan that I was sure God would be pleased with. From the time I was a little girl, I had decided that I wanted to hear Jesus say "well done thou good and faithful servant". What better way than to raise 6 more dedicated servants in the work of the Lord! Life was good. I had a husband that adored me and my idea's! You name it, we had it..healthy eating, good sleep schedule, family unity with lots of fun and playtime...church activities and bible memorization, playing instruments, working, exercising, godly education...community service, giving to the poor, nursing home visits, family devotions and baking fresh bread and cookies for the neighbors! And we loved it all!!! The kids were each others best friends...we were a rolling ball of godly love and fun! All the neighborhood kids were drawn to us and that simply provided more ministry that the kids were well equip to do. It was a good plan, and a great effort that I believed would give way to "my" dreams for "my" children. But one day, it became very clear to me that although the upraising was good and would be useful to the Lord, "my" plan wasn't "His" plan. In fact His plan was horrible. It didn't flow. It was unexpected and full of devastation...tragedy,,,sorrow...so much that I wished to die. How could you God? Haven't I been a good steward of your property? Don't you see what I am doing here?....... But I couldn't get away from these thoughts that I had night and day.....Yes, I do. Thank you, I'll take it from here. I love you. One by one the painful giving back led way to absolute surrender...each one as difficult as the other. Job was my best friend as I sat in the ashes of "my" dreams. My husband and I clung to each other as we put our trust in God...we literally had to sit back and watch events unfold, that came upon us like Jobs announcers of trouble. This would strip us of any pride left in us, of all "we" had done. Recently we surrendered our youngest, now 18. We have labored hard. Now we sit in God's garden, waiting...watching, anticipating His next move. Now they are fully "His". Now we have fully surrendered to "His" plan. A plan that can only be seen through faith "in God", not in our works. The story is growing and the garden is blooming....Psalm 90:14- 17 O satisfy us early with thy mercy: that we may rejoice and be glad all our days. Make us glad according to the days wherein thou hast afflicted us, and the years wherein we have seen evil. Let thy work appear unto thy servants, and thy glory unto their children. And let the beauty of the Lord our God be upon us: and establish thou the work of our hands upon us: yea, the work of our hands establish thou it. <3 Ben's garden is blossoming, and it is full of God's perennials. Lifting you up.

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    1. Very well put, thank you very much! May God grace stay with your family also as he stays with Bens family & many others too.

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  85. I think when God took from Adams rib and made women, he probably was thinking of a structured plan in mind. Suddenly things changed and became Unstructured, but that was ok he did not try to change what was happing, but to teach us from it. To Mindy & Andy, I cry, pray for God to change this, but I know in my heart he will do what is right for all. I smile inside & out side when I see your family smiling (like from Jeff Musial). I feel for your entire family, the contest changes of a structured to unstructured life & I know God is right there beside you as you all walk this path. I still pray for miracle, God's grace & love. Thinking & praying for your family all through out my day.

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  86. Mindy and fam...
    Every day I pray for a miracle for little Ben, I pray for your strength and resilience through these times, and I pray that your faith does not diminish. I pray it with so much pain in my heart, you wouldn't even imagine. Each time they speak about lil Ben at The Chapel, I break down in tears. Everytime I read your blog, I can't contain my sadness. You are most definitely living the life our Lord intends. I know that prayer is all we have left when we hurt. Hope...Jesus. His Word. .I understand we must accept His will, and trust in Him wholeheartedly. And because of that, I just wanted to share a bit of info...I'm not sure if you are trying any natural medicine with lil Ben, but I was convicted to come back to your blog and type these words....Graviola...please look into this...and see if you too feel this could be helpful. I send all my love and prayers to lil Ben and your entire family. May God Bless you always and forever. Kisses to Ben...

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  87. Romans 12:15 Rejoice with those who rejoice,weep with those who weep. How much we have wanted to rejoice with you but now Mindy it seems we will be weeping with you.
    Psalm 56:8 You have kept count of my tossing, put my tears in your bottle. Are they not in your book.
    Tonight there are many tears that our God is putting into His bottle, our tears join yours. Are they not in His book.

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  88. My heart is breaking for all of you....I promise you, you will get through this. I lost my son in October from another rare cancer. We fought that crazy disease for 14 mos. I look back now and it seems like a dream. I love your comment about not spoiling him. I did the same thing and one friend, one time, questioned me. She'll never make that mistake again. Beautiful family and he will always be a part of your family. My first mother's day without Alex was different, but he will always be with me in spirit. I will be praying for a miracle of some kind.

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  89. I was on a skype seminar sat with a lady who aggessively took God at His word, Her husband had cancer and 5 other life threatening diseases , he is healed, Then their 5th child was born with down syndrome, she began to apply the stripes of Jesus and she is passionate. Her child is being healed. She shows pictures on her blog of the changes. and after all of the diseases her husband was healed from she new that God was the HEALER and began to take her authority.Another mom , I read her blog , same thing as your son a cancer tumor. I have been in touch with sent her info and he is being healed. Amazing results because of Jesus…Please contact me for more info warriorbride_7@hotmail.com

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  90. As I read this, and all of your blogs-as I've gone through and read several- you have blessed my heart. I just heard of your family's story today. And, honestly, I can't help but think and feel so grateful that God chose you. As a mother. As a wife. As a woman. As a Christian. He chose you to go down a path that has brought so much sorrow and hurt. He chose you to lead so many others to Him who have been lost along there own journeys. He chose you to be Bens mother. He chose you to teach a little boy to be strong and brave, so that he could teach hundreds of other FAMILIES how to be strong and brave. Your entire family has shown so many others the power and mercy and grace and unwavering love that God has. Because through your storm, you have remained faithful. Of course, we all have our downfalls. But, from what I've read and seen, I've never once heard of you giving up your faith and counting on an earthly miracle. God chose you to change the world. Literally. Through media or whatever other forms you have, your story has reached. And hearts have turned to God for it. I feel Gods purpose for Ben has been to make you so strong and so faithful, so by your walk with God, you would lead thousands to Him. How amazing it is. How good is God! My heart hurts so much for your family, but because sickness happens as we are human, I'm hopeful in knowing that God chooses the best to endure these trials. I'm comforted knowing God is always good. Even when life is bad or hard, God is always good. Thank you for keeping your heart set on God. You have forever blessed my family.

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  91. I will keep you and your family in my thoughts and prayers. I too know how it feels to lose a child to an illness. I list my child 7 days after he was born to Trisomy 13. My heart pours out to you and yours with love. In time God heals alk wounds and there was reason and a purpose for him to be brought into your lives and called home to the glory of God in such a short time. May your hearts be blessed and be filled with love and in time you will see him again.

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  92. I'm So, So Sorry! Praying Grace And Strength For All Of You. Rest And Comfort For Ben. As The Mother Of twin 6 Year Old Dajghters This Breaks My Heart...Carrying YOu All To Jesus Asking That He Makes His Presence So Real To You Thru This Valley.

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  93. Just wanted to let you know that we continue to pray for your family. We have 3 boys, and a baby in Heaven that was due right around May 5, Ben's birthday. My nephew was born on Ben's exact birthday, in 2009, and 1 year later, Jesus helped to heal my heart more by giving us Simeon on May 5, 2010. Tonight, Simeon, our 4 year old, prayed that God would comfort you. Then he came up to me right after that, and gave me a hug and said, "Mom, that hug is for Ben." Then I started reading all of your latest updates, and am weeping! Thank you for your open heart and so thankful that one day you will all meet again. My eight-year-old also prayed and just said that it just stinks and is sad. I agreed with him, but then we talked about how one day Jesus will make all things new. Waiting for that day with you! Love, Lauren (for Nate, Silas, Simeon, and Sol Crouch-servants in Asia-Pacific)

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