Friday, May 9, 2014

Struggling Through the Transitions

The doctors tell us that Ben is "in transition."
 
I really really hate transitions.
 
Ben knows his body is changing. Even with the increased medication, he does not feel like himself. Overall, his anxiety has improved as he'll let me sit with him for longer stretches, giving Andy a little more wriggle room than before. But he still would prefer no one to leave the house. And over the past twenty-four hours, he has been complaining about his head hurting. "On this side," he says in slurred speech, gesturing to the left side where his hair is gone. Where the tumor began. And where it continues to grow. He sleeps a lot. His new hospital bed has been a blessing, though still an eyesore, making it easier for us to join him for a nap without disrupting as much as on the couch. We can easily move his back up and down to suit his needs.
 
Today, he said that he wanted to take his nap downstairs and not up in his bed. When I agreed, he said that he wanted to sleep downstairs at nighttime, too. I told him that wasn't a problem at all. He smiled. I'm grateful that he feels a bit of comfort. But I'm also sad at the possibility that he won't be returning to his own bedroom to sleep in his own bed anymore.
 
We had a Mother's Day tea at preschool this morning. It was just beautiful and the teachers did so many things with the kids to make us feel special. One of them was a class book where each of the kids were asked to finish the sentence, "I love my mommy because" and Jack said, "because she sings to me before bed." When everyone ooed and awed, Jack added in my ear, "And that's why I sleep all the way until daytime."
 
Me and Jack at the Mother's Day tea this morning
 
Both of my boys love that I sing to them at night. I sit in between their two beds and softly stroke their hair as I sing. Songs about how much Jesus loves them and that he's got the whole world in His hands. Songs that comfort. I'm so glad they let me still sing to them even though they're big five-year-olds now. I'm going to miss stroking Ben's hair next to Jack's tonight. There was always something special in those quiet moments with just the three of us. Makes me remember fondly those sleepless nights when they were in utero and I'd dream about what life would be like with them after they were born. The only other time I couldn't sing to them at the same time was when Ben was in the hospital. My heart just aches at the thought of them being separated again.
 
Andy didn't text me to say how anxious Ben was while I was at the tea this morning. He wanted me to enjoy myself. When we did arrive home, Ben immediately calmed down. Andy said it was the first he stopped crying in the past hour and a half. Oh, my poor baby. He downed the cheeseburger he requested that I bring for him and then asked for some pancakes.
 
While I stirred the batter in the kitchen, Jack came over and so I asked if he wanted some as well. "No, thanks. I just want Ben to get better."

Oh, my baby. He doesn't usually mention Ben like this. "I know, buddy. Me, too."

"We love him, Mom."

"Very much," I added, stifling tears. Geesh, why did I put makeup on this morning?

"I love him very much, too." Then as he turned to walk away, he added, "And I still want to play that game where we bump heads."
 
And for the fiftieth time today, my heart broke. Jack misses his brother.
 
Preschool graduation is in less than two weeks. It's the official send-off for preschoolers, signaling their readiness for kindergarten. The other moms this morning were talking about how emotional that will be. To see their five-year-olds, their first borns, ready for full-day Big School, five days a week. I agreed. It is going to be emotional. But not only will I be anxious for Jack, excited for his next step. I will also be sad for another reason. Sad that the chances are pretty low that Ben will be joining him.
 
I do not mean to act as though Ben is already gone. I don't want anyone to think that we have given up praying for God's complete healing and mercy in his life. God is still in control and still very capable. But I am also human and very aware of the prognosis I see in front of me. And barring the possibility of a miracle, Ben won't be with us for too much longer. We have no clear time-frame. Ben has already proven that he will not be confined to the parameters set by modern medicine.
 
The tumor appears to be growing. Not only because of Ben's recent complaints, but because you can physically see it. The scars from his incision are expanding. They are growing wider. It was the reason the neurosurgeon did not feel comfortable with a second surgery. He had been worried he wouldn't be able to put his skull back together because the tumor would just want to continue pushing out. His appetite has decreased and today is Day Three without a bowel movement. We will have to give him an anal laxative tomorrow morning if he has still not gone by then. Ben still takes all of his medication orally - and he does most of it himself - but that might not last much longer either. With the increased frequency of his meds, Ben gets more irritated. He does not enjoy being injected with foul-tasting medicine every other hour of the day. The day may not be too far away where we may need to access his medaport and administer his medication intravenously.
 
And so we wait. And pray. And plead for mercy.
 
Being "in transition" signals a change for everyone in our family. If Ben is going to nap in the living room, the other kids must vacate the house in order to give Ben the quiet atmosphere he needs. That requires extra planning. Thank God for family that is close by and willing to help care for them. If Ben is more comfortable downstairs, Andy and I will have to limit the amount of cleaning, TV-watching, talking, etc, that we do in the evening after the kids go to sleep. And my husband will have to sleep downstairs on the couch with Ben.
 
Jack can sense the drastic changes happening in our house right now. I'm always curious as to what is going on inside of his inquisitive little head. But I have a feeling that the majority of his questions won't come until later. While all of this has happened really quick in the grand scheme of things, it has also happened relatively slow. We have all had to give up a few things at a time. We have had all had a little time to adjust to each new stage of our new normal. So I'm hoping that Jack will continue to be flexible with whatever changes might come our way just as we have been asked to do.
 
As I've said before. I am not afraid of heaven. It's the journey getting there that I dread.
 
Jack is right. We do love Ben very much. Very much. He is and has always been an integral part of our family. And I do look forward to the day when the boys can "play the game where they bump heads" again. Until that day, we will keep on keeping on. Because even though I have never been a fan of change, nor have I been welcoming of transitions, this is where we are. And so we will keep walking forward. With our eyes looking heavenward. Knowing that God is holding each of us in the palm of His loving and capable hands.

106 comments:

  1. Mindy, I pray for you every single day Mama! I'm so sorry that Ben, You & your entire family have to go through this very hard time. I lost my father to cancer in Jan but he got 51 years, and oh how I wish that your beautiful son had so many more years to experience this world. Every time I read your entries I am reminded of our borrowed time on this earth and I cherish it a little more. I pray that you soak up each and every memory that you can now, and while I know how hard this transition must be, know that when Ben is rescued from cancer, it will not be over, Ben & your family have touched the lives of so many people and will live on in those memories!

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  2. "The anchor holds....though the ship is battered
    The anchor holds though the sails are torn
    I have fallen on my knees as I face the raging seas
    But the anchor holds in spite of the storm "



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  3. I love the LORD, who listened
    to my voice in supplication,
    Who turned an ear to me
    on the day I called.
    I was caught by the cords of death; - Psalm 116

    so many prayers for Ben, you and your family.
    the snares of Sheol had seized me;
    I felt agony and dread.
    Then I called on the name of the LORD,
    “O LORD, save my life!” - Psalm

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  4. I tried so hard not to let the tears run out of my eyes. Mindy, no words I say can comfort you. I have come to love your family as if I've know you forever. Every word you write takes us into your house, into your heart and emotions. We can feel your fears as well as your joy.Thank you dear woman of Christ for taking the time to share your journey with us.
    Dear God please hear and answer our prayers for Ben and his family. Cover them with the mantle of Your love. Please allow them to feel Your presence.

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    1. Patti, I think you just spoke for all of us. Thank you!!

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    2. Patti I couldn"t have said it better, you are right Gina she just spoke for all of us. Love and prayers for the Sauer family!

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    3. Amen. You really did speak for all of us. Ben and his family have been in every one of our prayers. Several times daily. My boys ask about him and I look forward to each and every post, PRAYING it'll be good news. I love the Sauer family as if I've known them forever.
      Please Lord.

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    4. O Yes Lord, hear our prayers. Amen.

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    5. Perfectly said, Patti. I wish I could give you a big hug right now, Mindy. Praying for you and your sweet family.

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  5. Even as Ben doesn't want Andy out of his sight, YOU are never out of sight of our Heavenly Father. He is watching over you all every second of every day. Praying fervently for you all.

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  6. I read these through a FB contact and right now I cannot see the screen for the tears that running down my face. Your family is remarkable and your faith unshakable. I know He hears all and sees all and all I can do is pray that He heals little Ben in a way that brings peace to all.

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  7. transitions slowly lead the way to seasons changing...I wish you didnt have to go through these deeply painful days, months, and seasons. I wish i knew you so I could atleast hug you. the seasons will continue to change, for better or worse but Our God has not and will not. Thank you for you willingness to share and include us in your story. Thank you for you strong faith...your anchor. prayers and many hugs....give Ben an extra big one. :)

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  8. Praying for you and your precious family

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  9. praying and Believing always Mindy!

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  10. Oh Mindy, I'm reminded of my own aching prayer "Lord heal him or take him" with my first husband. My waiting was about 24 hours and my husband passed away. I can't imagine living in that anguish and I know many have and do. I'm asking our kind and merciful Father would heal him or bring him home. Praying and crying for you all OFTEN.

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  11. He is your Hiding Place, Mindy. Praying hard with and for you.

    https://soundcloud.com/wendychild/hiding-place

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  12. Mindy, my heart is breaking as I battle with trusting God and His perfect will, having faith in His ability to heal in the eleventh hour, and being so scared that His will is not the same as ours. I'm thinking it looks like the eleventh hour and begging Him to show His hand to all of these people watching Ben and this journey you are all on. I hope you can feel all of the love and hugs from all of us that don't know you personally but are hurting for you, crying with you, praying for you all. Our God is weeping with you, with us, through these transitions. May the Holy Spirit fill your home with peace and comfort for Ben and all of you.

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  13. Oh Mindy...begging our God for mercy and praying strength and the peace of His presence to carry you all as you walk through this valley...the #hardeucharisteo as Ann says. I am in Kim's co-op here in So. CA and my heart is heavy and praying so SO much. Sending so much love.

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  14. My heart aches for you, literally aches. I think you are incredibly strong as I know I couldn't cope with what you are going through. I am sending strength and hope to all your family. Much love from Scotland.

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  15. I have never written because my letter will no doubtedly get lost with the millions of others...other lives that you and Ben have touched. I have prayed for you and your family many, many times. With each post, my prayers get a little more fervent. Lord, keep this family in the palm of Your Hand. Let them feel Your love and peace.
    I have so much enjoyed your posts and your gift of writing. When you are ready, I would love to see your posts put in to book form in memory of Ben. I will be the first one in line to order this book. Thank you.
    "Let not your heart be troubled; you believe in God, believe also in Me. In My Father’s house are many mansions; if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also. And where I go you know, and the way you know." John 14: 1-4

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    1. I agree with Elisabeth, it would be so beautiful for you to put your wonderful writings into a book form some day. I don't know you, but I regularly cry at your blog (I have a 5 year old myself and I also have twin 18 month olds so I can relate to you on those two levels) Thank you for keeping us regularly updated so we can pray for your family.

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    2. I too would love to see your writings in book form...I have been following your blog for several weeks...your whole family is at the top of our prayer list...and I stop so often during the day and think of you and what is going on in your life at that moment and say another prayer....Thank you so much for keeping us all updated...and will continue to pray for peace, strength and love in your home..and ease of pain for Ben....

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  16. Praying for your adorable family. ALL six of you.

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  17. Ok, well, I probably shouldn't be in front of a keyboard right now because I'm a little emotional after reading that and I apologize if I offend anyone. But I want to punch God right in his face for putting Ben and your family through this. I just don't understand how the guy who made the whole universe can't let a little boy go play with his brother for five minutes? It's ridiculous. Now, I'm sure in a few hours I'll calm down, reason this out, and say I'm sorry to the Big Guy. But not right now. I don't have any inspirational verses or natural cures to offer you that cured my grandma's sister's cousin. All I can say is this is crap, and your family doesn't deserve it.

    p.s. if God works a miracle and heals Ben I will personally come back and apologize for being an a-hole

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    1. You know Michael, as a Christian I am NOT offended. There are a lot of things I don't understand and I wonder why God allows some of the things that He does. His shoulders are strong and He is used to, us in our humanness, crying out and railing against injustices. In some ways, maybe He is "glad" that we can feel anything at all given the hard world that this can be sometimes. I think any one of us would say the perfect thing and do the perfect thing if it could make a difference for this precious child and this beautiful family.

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    2. I'm with you, Michael. I'm mad. I hate that this is happening to my son. But every so often, I get glimpses of how God might be using this. It's definitely not the way I would like, but God has a plan. And even though I still get really mad at God and shout at Him in frustration, He hears me, He weeps with me and He comforts me to know that He will carry us through. <3

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    3. Dear Mindy,
      Thank you for being an inspiration for all of us. Thank you for sharing your story of strength and showing us what true faithfulness looks like. I liked what you said to Michael about how you get glimpses of how God might be using this. God is already using your family to better our lives. You and your family have united our community. We have seen people from all walks of life and from all corners of Western New York rally together and pray for your son Ben and your family. People that were not believers are believers now. Thank you for making us think differently and for making us be more grateful for the things we have. Thank you for making us more aware of our actions, for being kinder, more forgiving and quicker to let things go. Thank you for making me a better mom to my little 4 year old daughter, I hold her longer and I try to be more patient with her. Through God's love and grace, you and your family have changed our community in many positive ways. Ben is synonymous with love, strength and faith. His name has made us pray more and be grateful to God more. I have never met you, but your words are so powerful that they make me love you like a sister. I hope to some day meet you, hug you, cry with you and pray with you. God is amazing and He has done some pretty incredible things over the ages. I believe God will heal your beautiful son and God will ease your pain and anguish. God will move mountains to make this better. God's grace and mercy will shine even brighter than it already has. We send our love, support and prayers. Maria E. Masferrer, Renovation Church, Buffalo, NY

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    4. I read a book several years ago called "When Bad Things Happen To Good People" . It was written by a Rabbi that lost a child to aging disease. His son died a very old man at 14 years old, if memory serves. In the book he states that he does not believe that God "hand out" illness, cancer to people. That he doesn't sit up in his heaven and decide who gets to have a sick child and who gets a healthy one. He says that God created the world. But its not a perfect world and random things happen! And while God didn't cause the cancer, or illness or affliction, he is the one that gets you through it! He provides the undeniable strength we see so many times in people like Mindy & Ben. We always ask and wonder "How can they possibly carry on, how can they get through this?" the answer is simple God gets them through. After reading that book I never looked at things the same way and I never blame God because I don't believe that he's responsible for the random things, bad things, that happen, and I always have an answer when someone is conflicted and mad at God. I hope this helps you. God Bless You Michael
      Love & Prayers for Ben & you're whole family Mindy from Ann Piazza & family West Seneca, NY

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    5. Please be reminded justice is getting what we deserve, mercy is not getting what we deserve, and grace is getting what we don't deserve. God doesn't always hand out justice, and many times he slides right over mercy, way beyond mercy, to grace. That gives us the chance to be angry with Him and the strength to go on.

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    6. Mindy you are amazing and please have a happy Mother's Day your an amazing mother to all 4 children. I am with the rest in this blog please write a book you have reached out and changed our community let alone all the others that are responding. I wrote to Dr. Phil to ask his son to approach you about a book please consider it. Your Gods tool right now and your doing an amazing job of changing us all. We are following you and reaching out to you in love, prayer for your whole family your blog is moving around the world changing everyone it touchs, your

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  18. Sacred Heart of Jesus, please hear & answer our prayers. Praying for Ben & you & your family... ��

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  19. Words that helped me through a similar transition...

    What is dying?
    I am standing on the seashore.
    A ship sails to the morning breeze and starts for the ocean.
    She is an object and I stand watching her
    Till at last she fades from the horizon.
    And someone at my side says, “She is gone!”

    Gone where? Gone from my sight, that is all. She is just as large in the masts, hull and spars as she was when I saw her, and just as able to bear her load of living freight to its destination. The diminished size and total loss of sight is in me, not in her. And just at the moment when someone at my side says, "She is gone," there are others who are watching her coming. And other voices take up a glad shout, "There she comes," and that is dying.

    Praying for God's strength to ease your pain and help you through this devastating time of transition.

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  20. Great thing is "Children will not give up" they trust it will all turn out. It will. I believe! ! I love you Ben!

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  21. Have you contacted Hospice. I have lost three wonderful people to cancer In the past few years. Two were in Hospice, one was in her home and Hospice nurses and volunteers came there. I cannot even begin to explain how wonderful these people are. They are angels among us. They allow you to share quality time with your love one, while they handle the day to day tasks. They allow you the gift of uninterrupted time with loved ones. They come in, and the tension dissipates. Don't miss rubbing the boys hair as you sing to them, let Jack camp out next to Ben. Continue the tradition, just in another room. Schedules are gone, just delight in every hour God graces you with this precious boy. His bed is not an eyesore, it is a place of comfort for a beautiful boy. Dress it up with superhero sheets...make it the most precious and beautiful accessory in your house! When the woman I spoke of who stayed home and had Hospice come to her had her hospital bed moved into the living room, it became the gathering place for togetherness, quiet reading, movies, whatever...one of my most special memories is when she wanted to watch a movie from when she was a little girl. There she was eyes closed, listening to the movie,along with her big strapping husband and her grown up big brother, watching this little girl movie, singing softly the songs to her, just being together. Didn't matter what the room, or house for that mattered looked like, what mattered was the power of love in that room. I don't remember whether the room needed dusting, but I will always remember the love that day. Don't give up the singing...just move it to another room! Get another bed, a cot, whatever and put it next to Ben for Jack....who cares what the room looks like. Life, for all of us goes fast. Make pancakes at midnight, camp out in the living room together....just love...schedules, the cleanest house, being able to do what you did as a couple really doesn't matter now. Love....the strength of raw love, is what will be remembered of these days. I remember as things got worse for one of the women who was in Hospice. No one wanted to leave, so basically we set up a tent community and the whole night the room was full of those who loved this woman and who she loved. I was sitting holding her hand in the middle of the night and I looked around in amazement, there were people sleeping on couches, in chairs, on the floor...it was the most amazing sight I have ever seen...a room full of love, united...in helping this woman move on with love, grace and dignity to her future home with God. I will never forget the sight of that room, that night. It was not about schedules, what was, loss...it was about coming together in love .Sending you love and hugs. When Andy sleeps on the couch perhaps you be right beside him in a recliner...memories, love...it is all that matters...You are an amazing family. You inspire me every day.

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    1. We've been working with Essential Care (the children's version of Hospice) ever since Ben as sent home. They've been a great resource to us, the ones that brought the bed. Thanks.

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    2. When I read your words " I looked around in amazement, there were people sleeping on couches, in chairs, on the floor...it was the most amazing sight I have ever seen...a room full of love, united...in helping this woman move on with love.." all I could think of was the love felt right here in all the comments from so many many people world wide who follow and encourage the Sauer family. Thank you for allowing me the chance to reflect on all the love that radiates through these posts.

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  22. I don't know you, but I'm praying for your family to experience a miracle. Thank you for your courageous sharing. I'm learning a lot from you.

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  23. I love the picture of you and Jack.

    I pray that God blesses your family and your sweet Ben. I pray that God keeps Ben free from pain. I pray that God decides Ben needs to be on earth instead of in heaven and I pray that Ben gets to meet his new sister here on earth.

    My five year old son came into the room when I was reading your update, saw me crying and asked if I was reading about the sick boy who is his age. I told him I was reading an update about Ben and his family. My son gave me a hug and said he hopes Ben gets better soon. All I could tell him was I do too. Please God bless Ben.

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    1. It's these stories about children that get me the most. God, hear their prayers. <3

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  24. Mindy, you looked so pretty in your Mother's Day picture with Jack. I'm glad you got to go this morning and spend some one-on-one time with him. As I was reading your post, my 10-year-old, Nathan came into the room and looked over my shoulder. He said, "How's Ben?" He's the only one in my family that I've told about Ben. I just can't talk about it. Nathan & I pray for your family every single night. Your little boy is so loved and so are you! xo

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    1. I do hope that, ultimately, Ben's story will be one of hope and faith. But I completely understand the pain. God, hear the prayers of our children.

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  25. Keeping all of you in my thoughts and prayers, asking God to bring a miracle to Ben. ((HUGS))

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  26. You don't know me, but I am a mama praying for you....I made a donation today, wish we could do more. ..Praying for a miracle and for peace that passes understanding. Happy Mothers Day

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  27. Sending you continued prayers and strength. Wishing you a Happy Mother's Day surrounded by the love of your children who love you so. Hang onto hope.

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  28. My daughter and I are singing/playing a song at church on Sunday entitled "Beautiful Mother" by Sarah Hart. It made me think of you and this difficut journey you are undergoing, much like Mary having to endure the pain of seeing her own beautiful Son suffer. I will offer this song up for you. You are truly inspiring. May God continue to bless you and your family.

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  29. please read my pm to u on fb on blue 4 ben page. it's quite important. sending prayers for Ben as always

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  30. You are such an amazing women...God Bless you and your wonderful family!

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  31. Praying for you.

    An old seaman once said, “In fierce storms we must do one thing, for there is only one way to survive: we must put the ship in a certain position and keep her there.” And this, dear Christian, is what you must do. Sometimes, like Paul, you cannot see the sun or the stars to help you navigate when the storm is bearing down on you. This is when you can do only one thing, for there is only one way. Reason cannot help you, past experiences will shed no light, and even prayer will bring no consolation. Only one course remains: you must put your soul in one position and keep it there. You must anchor yourself steadfastly upon the Lord. And then, come what may— whether wind, waves, rough seas, thunder, lightning, jagged rocks, or roaring breakers— you must lash yourself to the helm, firmly holding your confidence in God’s faithfulness, His covenant promises, and His everlasting love in Christ Jesus.



    Cowman, L. B. E.; Reimann, Jim (2008-09-09). Streams in the Desert: 366 Daily Devotional Readings (pp. 137-138). Zondervan. Kindle Edition.

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    1. One time, in meditation, I realized as a Christian, when I was in a fierce storm, roaring waves, rocking thunder, there was only one thing to do: put my bow into the wind. That is, steer myself directly into the the storm, hold the wheel tight, pray with all my might, and face the fearsome storm head on, with confidence in the Lord my Savior, Jesus Christ.

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  32. Mindy, You and your family have been in just about every other thought the past few months, and by thoughts, I mean prayers. Your faith is stunning at this point in your life, and I hope that you will continue to find peace as we all still hope for Ben's recovery.
    In HIm,
    Rachel (Patrignani) Pynnonen
    A fellow twin sharing in your journey. Thanks for blogging. Lots of love from Naples, Florida.

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  33. Every night I ask my 2 yr old son if he wants to pray for Ben and he says "Yes Mommy, no pain little Ben, no pain" May God bless your beautiful son in his journey and provide him with the peace of no pain. Your perfectly written story of an aching heart teaches all of us that we are human and are connected to each other through something much bigger than the whole of us. Keep on.......

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  34. Mindy, I want to just be on board as one more person who wants to let you know how your family and you have affected me. Ben and your family are in my prayers. Yesterday, I was in the middle of a scary procedure...the nurse took my mind off myself when she noticed my Blue for Ben bracelet....next thing I know I'm in prayer for Ben and I believe the nurse was joining me as well. May you take comfort in knowing you and your family are loved by many who do not even know you and most importantly by our precious and Holy God who knows you and loves you more than any of us can even begin to comprehend.

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  35. Mindy , as a mother myself I cry with you hoping that somehow it helps take some of the pain away, some of the pressure and just gives you a break from doing all the crying . Don't give up on your miracle , you and your family are great . Much love , and Happy Mothers Day ! Enjoy all the love and blessings that day from your little ones , cherish all the hugs and kisses and never forget God is love : )

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  36. Happy Mother's Day, MIndy. This one is a special one and I'll be thinking of your family and praying for you all. With love <3

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  37. Wait... I'm not done.

    Dear Ben,
    You are so special. How could a small boy in New York reach through the miles and tug on my heart every day? Did you know the circle of love that has spread over so many people as they think of you every day? Well, we're out here like an army of prayer warriors and we're all wearing blue.
    I think I will remember you my whole life. Your story is etched in my memory. Thank you for making me appreciate my family more, especially my 2 young, beautiful boys. When I read about you I make sure I go right to them afterwards to hug and snuggle and play with them. My husband and I are so blessed to have them. Thank you for reminding me to slow down and love them more. Once in a while my son Vincent, age 8, will ask me, "How is your Ben?" Both he and Christopher, age 5, include you in their prayers at night.

    This makes me think of you...
    "Just think, you are here not by chance but by God's choosing. His hand formed you and made you the person you are. He compares you to no one else. You are one of a kind. You lack nothing that His grace can't give you. He has allowed you to be here in this time in history to fulfill His special purpose for this generation." ~Roy Lessin

    You are so blessed to be in the care and grace of your family. They love you gently but fiercely. And they are teaching so much with their words and actions.

    Praying for you every day and sending you love. <3

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  38. Beautiful pic of you and your Jack. My heart and Prayers for strength and peace to Ben, you and your family with much love. Special happy mothers day with your precious beautiful babies

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  39. I just layed my hand on your Ben as best I could, by touching his photo on the screen of my laptop and praying......praying for his comfort and peace in this night. Praying that he will know that Jesus is right there with him aLL the time, even when Daddy or Mommy has to leave the room. My Mom-heart aches for you, and I will continue to lift you up--you and all of your precious family. Laurie F.(friend of Kelly Gibbel, Lancaster PA)

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  40. Reid prays for Ben spontaneously every day, and all three kids ask about Ben, Jack and Megan constantly to me. You are so very loved. Thank you for the gifts of faith and hope you've given me, and for sharing this most painful journey with us. <3 <3 <3 Ben will always be my hero, no matter what side of heaven we're on.

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  41. God has given you a great gift so far, the gift of time. A little more time, so you can accomplish His mission for you, so Ben can accomplish all God has wanted for him. A little more time. I pray and hope God will bless you with a lot more time, 80 or more years for Ben, in good health.
    But how merciful is our God, who in His compassion has helped you to care for your son, and adjust more slowly to each change that has happened. He has given you (at least) one more birthday with Ben, and (at least) one more Mother's Day with your beautiful son, and there is much joy in that.
    All of reading here wait and pray each day. We hope in the Lord. We want to hear the good news that Ben is getting better, but we also know that might not be. We wait with you, Mindy and Andy, because you are our sister and brother in Christ, and we are one Body, and what wounds you, wounds us. Therefore we hope and petition the Lord, that you may find joy in a miracle, like Jarius in the Gospel who pleaded for his little daughter: "Then one of the synagogue leaders, named Jairus, came, and when he saw Jesus, he fell at his feet. He pleaded earnestly with him, “My little daughter is dying. Please come and put your hands on her so that she will be healed and live.” So Jesus went with him....While Jesus was still speaking, some people came from the house of Jairus, the synagogue leader. “Your daughter is dead,” they said. “Why bother the teacher anymore?”
    Overhearingc what they said, Jesus told him, “Don’t be afraid; just believe.”...He went in and said to them, “Why all this commotion and wailing? The child is not dead but asleep.” But they laughed at him. After he put them all out, he took the child’s father and mother and the disciples who were with him, and went in where the child was. He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”). Immediately the girl stood up and began to walk around (she was twelve years old). At this they were completely astonished. He gave strict orders not to let anyone know about this, and told them to give her something to eat." Mark 5:22-43
    Lord, you can do anything. Please come and lay hands on Ben, and heal him.

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  42. My 4 1/2 year old daughter Ella prays for Ben every day. She prays that the tumor will go away and that he will feel better. While she prays for him, I pray for you, dear lady, as I can't imagine the heartbreak and powerlessness you must feel about your precious little boy. My heart is with you and your patient husband. May our dear Father hold you and your family in His hands, buoying you up in His peace that passes all understanding.

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  43. Mindy, I don't know you but randomly happened across your blog a few months ago on Facebook and I read it often and pray for your family and Ben much more than that. I just want you to know that fellow believers in the Healer, Jesus Christ, are praying for y'all all the way out here in Los angeles. I wish I could say more but just know I cry with you and plead for healing and hope for Ben and y'all.

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  44. I've been following Bens progression and Praying for your family. I shared your story with a lady named Rachel that was giving testimony of her life in the parking lot of where my husband was at the doctor (ear infecction) and she made me promise I would come out of my shell and tell you she's Praying for you and to get some Blessed oil and as many people as you can get together around Ben and join hands and Pray. She was adament I let you know. So I am. I will continue to Pray for a miracle for you, I am glad your not afraid of Heaven. Losing my pregnancy, the only comfor I took was my child is in Heaven.. he\she could have grown up and taken the wrong path with me not being able to fix it. So just wanted to share and I think about your family so much.

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  45. Mindy, someone asked me if Ben had been baptized, and I had to admit, I didn't know. So I wanted to suggest that he be baptized, if not by your minister, but then by yourself or Andy, using the biblical formula, "Ben, I baptized you in the Name of the Father, and of the Son, and of the Holy Spirit." Matt. 28-19. Even a very small amount of clean water (even a few drops) poured over his head will do. If he hasn't been baptized, I hope you will do this as soon as possible.
    God bless!

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  46. Hi Mindy,

    I pray that you will be encouraged by this note. I'm praying for Ben and your entire family. Your situation brings me back to another Ben, 16 years old, who also had a brain tumor. He wrote this note on Facebook shortly before going in for his first brain surgery:

    "I write this message to those who are watching out there, those who see everyone rally around me in prayer and want to see if God will pull through this time. I titled this message Daniel 3:16-18 because it is how I see my story. Daniel 3 tells the story of Shadrach, Meshach, and Abednego, three men who stood up against King Nebuchadnezzar and refused to bow down to him and his image. Now, I see this story relate to mine when the King takes them to the firey furnace in order to kill them. He looks at threm and tells them that if they do not bow down this time they will be thrown into the furnance. He asks them, "what god will be able to rescue you from my hand?". They reply to him, saying, "King Nebuchadnezzar, we do not need to defend ourselves in this matter. If we are thown into the blazing furnace, the God we serve is able to deliver us from your majesty's hand. But even if He does not, we want you to know, your majesty, that we will not serve your gods or worship the image of gold you have set up." We all know how the story ends. The three are spared, despite the intensity of the furnace, which burned the soldiers that threw them in. I feel as I am just as one of the three. I know God has the power to pull me out of this, and I have the peace that He will get me out of this one way or another. We all know and hope for the path that He will heal me and I will become a man of God with an amazing testimony. But theres also the chance that God's will is to take me home and away from this earth. My fear is not of death, I know where im going. My fear is that those who are watching these events and if it happens that I pass away as we all do will take this as a circumstance of God not pulling through for someone. Just because God doesnt take care of my tumor does not mean He left me. It means that my time for glorifying Him here is done and He would be taking me to a place with no suffering, no pain, no sickness. God chose to save Shadrach, Meshach, and Abednego. He may choose to save me, but He may not. But I know this is what God set in front of me for whatever reason or higher purpose, so I approach it with confidence in Him and His plan. No one should look at it any different. He plots my course and I run my race, however long or short or rocky or smooth. He put me here, and I know He will take me when the time is right."

    I pray that you are encouraged by his words of faith in our God.

    -Lisa

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  47. I am so greatful for your journal. I admire you and your husband so much, but yet I feel so much sadness for you. I can't imagine going through this journey that our good Lord has put you on. I cry when I read these posts and I just wish that there was something that I could do for you, even as little as grocery shop and leave them outside your door. I truly pray for your family every day and I talk about Ben everyday as he were a part of my family. You will get through this with your faith in God and for what you are doing on this travel through a horrible time..If there was anything I could do for you I would appreciate you please letting me know. Dawn Pietras tuxlady714@yahoo.com ANYTHING.

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  48. I feel as though I've come to know Ben & your family and I pray fervently that God will continue to give you strength. I just can't imagine how you are coping and how much you are suffering! Will continue to PEAY!! XXOO

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  49. Crying with you and praying for comfort in the arms of our God who knows how painful it is to watch His Son suffer. Thank you for your beautiful honest faith. Sending lots of prayers and love <3

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  50. Mindy, I commented yesterday and I've been reading all your posts. I came upon an article on Facebook about Gravila tree. I've always been told that when something is pulling on your heart that God is talking to you. I just feel I need to share....what if this was the miracle and I was supposed to bring it to you. I know that sound ridicules but how could I not. The Sour Sop or the fruit from the Graviola tree is a miraculous natural cancer cell killer 10,000 times stronger than Chemo.
    The National Cancer Institute performed the first scientific research in 1976. The results showed that Graviola’s “leaves and stems were found effective in attacking and destroying malignant cells.” Inexplicably, the results were published in an internal report and never released to the public…
    Since 1976, Graviola has proven to be an immensely potent cancer killer in 20 independent laboratory tests, yet no double-blind clinical trials–the typical benchmark mainstream doctors and journals use to judge a treatment’s value–were ever initiated….
    A study published in the Journal of Natural Products, following a recent study conducted at Catholic University of South Korea stated that one chemical in Graviola was found to selectively kill colon cancer cells at “10,000 times the potency of (the commonly used chemotherapy drug) Adriamycin…”
    The most significant part of the Catholic University of South Korea report is that Graviola was shown to selectively target the cancer cells, leaving healthy cells untouched. Unlike chemotherapy, which indiscriminately targets all actively reproducing cells (such as stomach and hair cells), causing the often devastating side effects of nausea and hair loss in cancer patients.
    A study at Purdue University recently found that leaves from the Graviola tree killed cancer cells among six human cell lines and were especially effective against prostate, pancreatic and lung cancers.
    Then I read about some tests they have run through Snopes.com. http://www.snopes.com/medical/disease/graviola.asp
    I want your miracle for Ben.......Deborah Pucci

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  51. Jesus, keep me near the cross there a precious fountain. Free to all a healing stream flows from Calvary's mountain. Near the cross be my glory ever, till my raptured soul shall find, rest beyond the river. An old hymn that I hope gives you comfort.

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  53. For Ben to listen to. Sounds like angels ♥

    http://m.youtube.com/watch?v=jcZQhxb5lyw

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  54. My heart continues to break as I read your story and think about all of the details of your day as a mom to three children, one very sick, and one on the way. I think about you daily and pray for you in all of the daily tasks that must still go on even as you are facing such an enormous challenge. I am praying for each of you, that God meet you right where you are and be so close and hold you so tightly that it can only be God.

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  55. Mindy,
    I was driving early this morning and listening to a song where the words for the first time put meaning into someone's life and that someone was you in my mind.

    Maybe you heard of it….the Singer is Plumb and her song "Need You Now….her lyrics are exact words that I have read you expressing your family life and emotions. If you have time to listen, it will at the very least indicate that many people especially Christians suffer hardships and hurt.

    We continue the prayers and let God do his will. Easy for me to say and hard for you to accept…I know.

    In Christs Love.

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  56. Continuing to keep you all close in heart and prayer.

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  57. I know there's time we pray and then there comes a time when we rest in the Lord and release it to Him. We pray the peace that surpasses all understanding to fill your household. MIndy, you're such an awesome testimony of what motherhood is- loving with every fiber of your being- laying down your life for your children and family. We continue to declare that you and your family are strong in the Lord. Goodness and Mercy shall follow you all the days of your life.

    Lori

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  58. ♥ ♥ ♥ ♥ ♥ ♥♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥... it's all I can do. Prayers....

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  59. Mindy, This past week my son's class wrote letters to their moms expressing their love and gratitude. My letter arrived yesterday. I waited until Scott got home so we could open it together. It brought happy tears to my eyes. Scott gave me a big hug and told me he loves me. Scott is a twin. His twin Bryan is in heaven now. Your love for your family is so evident Mindy through your words, thoughts and actions. Gather your sweet family around Ben and have family hugs. It's a wonderful way to bring everyone physically close, make each family member feel special with showing love all around. During these days and weeks ahead my prayer for you, Andy, Jack, Ben and Meg is for strength, patience, persistence and understanding. Mindy, you're a Godly Mom who truly is a servant for Our Lord. Have a blessed Mother's Day!

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  60. Mindy and all,
    Don't give up, just be there for your boy. When I was a baby, I was quite sick, surgery and all. I am now 79. My Mom prayed to St. Jude, and he answered her prayers. HE has been with us all these years. If you have not done so, give him a try. If he can do anything he will. My prayers are with you. N'Emma

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  61. Hope you have a Happy Mothers Day. Mine will be more sacred because of your blog. Thank you for sharing, for reminding me to love my kids extra every day, how not to complain that no one helped me clean the house, to know that love and support can get us through it all. I wish you a miracle today and every day forward but I think you yourself are a miracle.

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  62. Happy Mother's day to you. You are an amazing and special mom! Praying for y'all. Love to sweet Ben.

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  63. Happy Mother's Day sweet mama. We're praying

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  64. In praying for your family today, God put it on my heart that He is present with you in your sorrow- like how he wept with Mary and Martha when Lazarus died in John 11. We don't understand what He is doing, but I know that He loves you all so much. He is here with you. Lots of love and prayers! I think they all are doing so well! SO WELL!!! So proud of you all. Hugs!

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  65. I have been following your story since the diagnosis and I feel like I have smiled with you, laughed with you and cried with you as I read each blog post. I have prayed continually for Ben and your family and a few times a day I think about you guys. I have a 5 year old son and can't even imagine going through this with him so my heart just breaks for you all. The other night I lay in bed just crying and praying to God that he would either perform a miracle and completely heal Ben or take him home as his times of pain must be unbearable for you. I pleaded with God saying it was too much, too much for any parent to deal with and how could he let his child go through this? Then it hit me like a ton a bricks. You see, I know the gospel well. I know that God sent his perfect son to suffer and die on the cross. I always thought about the crucifixion from the point of Jesus. It never occurred to me how difficult it was for God to watch his son suffer like that. It gave me a whole knew appreciation for the gospel and what was done on my behalf. Here I was crying out to God saying it was too much yet forgetting he went through the very same thing and knows more than anyone how difficult it is. I will continue to pray for your family constantly. I just wanted you to know that your situation has revealed to me a whole other side that I never had thought about before. I have a new appreciation and perspective...

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  66. Prayed for you again during worship today in church..and God reassured me..that he is there with you in the deepest pain. He has not left alone.His healing presence is with you...that is what comforts..nothing else. I will keep asking the Lord for an abundance of his presence..that you feel him wipe your tears..that you see him work the little miracles you are asking for..that you can see him working and loving you all..even in the most difficult of days. May you get a glimpse of heaven..May you k mms ow the overwhelming love of the Lord comfort you...

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  67. Praying God will continue to hold your family close and allow others to help carry this load. God loves you and Ben and your family so very much, In His Love, sheila harris

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  68. I know you don't know me and I don't know you, but I want you to know that I am praying desperately for you and your family. Your story has truly touched my heart and your faith has been such an inspiration to me. God is good, God is big, and in the end, no matter what God always wins. May his grace and wisdom continue to hold you up.
    With love ~ Melissa

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  69. I am at a loss for words, All I know is I love you and your family with all my heart... What you are doing is just a beautiful tribute to such a beautiful little boy. I have been following your blog everyday... My heart just aches for your family.... I have made it my burden to pray daily for you and your family... God says we need burdens, so I pray he will intervene, may you know and sense his presence, and be guided by him. I so to want to see a Miracle for Ben. You truly are an inspiration to us all... Father God I pray you will wrap your loving arms around this family, comfort them and give them strength that can only come from you... Continue to provide all their needs and Bless them Lord...May little Ben find peace and be comforted in you, I pray he will have a divine visitation and have no fear... May he know how much he is loved by his family and mostly by you Lord...Continuing to pray and believing with you....

    Debbie

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  70. :( Praying for you and your family!!!

    Saw this blog post from another mom and thought it might encourage you. Sending love your way!

    http://www.scissortailsilk.com/

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  71. I cannot understand why a child or anyone for that matter has to be brought to such a painful struggle as this. I care and I love you.
    <3 <3 <3 Please Lord God we beg you to do Your will,we pray to accept Your will whatever it may be because You have taught us in the story of Job not to question You,for only You know what plans are ahead for us and only You have the right to bring us through them according to that plan so give Ben and his family strength courage mercy and peace.I pray this in Jesus' powerful name Amen <3

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  72. My heart, prayer and love are with you my friend...blessings to you, your family and most especially to your tenacious and brave little warrior...

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  73. May God grant you the strength and courage to get through this extremely difficult time. My thoughts, prayers and heart are with you and your family. I pray Ben does not suffer during his journey Home.

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  74. You and your family are in my thoughts and prayers. I wish there was a way to be able to say the right things to help or to ease the pain some but I know there isn't. I lost my daughter to colon cancer 3 years ago and I empathize with what you say and feel so deeply. In the last days we had to sedate Tommi bc the pain was so intense, I held her and talked w her awhile before they gave her the meds and told her that when she woke up she would be with God and wouldn't be in pain anymore, she said 'I want that mommy, I wish you could go with me.'. I hope that you can feel the same peace I do knowing that your baby, your love will be with God and pain free. In christian love, from one angel mother to another. <3

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  75. I know we don't know each other, but my friend from school shared your blog and I wanted to say that I am praying for you all also.

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  76. "As I've said before. I am not afraid of heaven. It's the journey getting there that I dread."

    I have never read a more accurate description of what I've always felt but never been able to put into words. You are absolutely correct and in so many ways that don't even need explanation.

    You and your precious family are in my thoughts and prayers. My heart goes out to all of you and I admire your strength, faith, and grace. May you all find peace and understanding. Many prayers your way. <3

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  77. May God give you and your family strength as you see to your beautiful son Ben's way home into the arms of Jesus. My heart and prayers go out to you all. <3

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  78. I wish i knew you so I could atleast hug you. the seasons will continue to change, for better or worse but Our God has not and will not. Thank you for you willingness to share and include us in your story.

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  79. We pray for you and your family. Sorry doesn't cut it, so instead i pray you keep on keeping on. In your and your families weakest moments remember you never walk alone. May God bless all of you.

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  80. I feel literally sick and Heartbroken to read this.... I have a 5 yr old little girl and I agree- how do you watch one of your babies pass away?!?! I do not even know how to comprehend what you must be going though. I am SO SO SORRY. I am crying along with you.
    "Heavenly Father- please bring comfort to Your son Ben. He is a PRECIOUS gift you sent to this earth but esp. to this beautiful family. PLease bring him peace and comfort in what appears to be his final days. Please embrace this family and envelope them with your PEACE, MERCY and GRACE.
    We THANK YOU for the precious boy you allowed us to see and know. I pray for Your Presence with this child of yours and with this Family. Send them people to comfort and hold them up. Please Lord send this family your PEACE. I thank you for this Gorgeous little Boy and I just pray you be near to this family as they go through this most difficult time. I pray this in Jesus's name. Amen"

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  81. My sister in law shared your story with me. Her 5 year old is also has cancer. so this hits close to home for me . i just wanted to let you know that you and your family are in my thoughts and prayers.

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  82. Book you should eventually read. I have an extra copy... I'd send it if I knew where.

    http://www.amazon.com/Gods-Child-Andrew-Sandra-Johnson/dp/0881411817

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  83. I don't know your family. It is so heart wrenching… the void of "normal" is so awful. I have a friend that has gone through the same thing and his name is John David Crowe… his wife's name is Jessica. Their son Noah was a blast and a joy through all he endured. I believe you will find great comfort in their ministry and their love for families with children and brain cancer. His website is johndavidcrowe.com … His email is John@johndavidcrowe.com I think if you get a moment to send him a note, he will contact you and mourn with you and pray with you and understand with you… because none of us can understand until we live it… I'm just so sorry.

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  85. I cannot even imagine what your going through its hard enough knowing when my dog leaves me but your own child i cannot process. My prayer was that Ben didnt suffer a child should never have to go through that and a parent should never have to see it. I praise God you are Christians because without the knowing where Ben is now and knowing you will see him again is more comfort then you could ever see. Even thought it will feel like forever for you it will feel like seconds for him hes always with you even though his body isnt there he is. You are in my deepest prayers God is holding you all together forever. xoxo

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  86. My prayers are with you and your son! Allah bless all of you! Stay strong. He will be in paradise inshaAllah!

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