Fall/Winter 2015 20

The Road I Would Have Never Asked to Walk

By Mindy (Albrecht ’03) Sauer

I know that many go through life with similar expectations: house, kids, and success. Our standards of success may be different from non-Christians, but we still believe that God has good things for our future. We want to raise our kids with the knowledge of good and evil. To show them that they can rely on God because He is the same yesterday, today, and forever. We want them to use their God-given abilities to better serve the Lord and further His kingdom.

One problem. Life happens. Stuff happens. Good stuff, bad stuff. It just happens. Our only choice is how we choose to react.

FamilyLast January, my husband Andy and I were thrilled to find out that we were pregnant with our fourth child. After already being blessed with twin boys and a little girl, we felt our hearts could just burst with joy at the thought of welcoming another. And then just two weeks later, we found ourselves living every parent’s worst nightmare. Our four-year-old son Ben, who was otherwise completely healthy, started complaining of headaches. A few days later, it was discovered that Ben had a brain tumor. It was a cancerous tumor. An aggressive one. And the doctors said he had just weeks to live.

Phew. That’s a whole lot for a young family to process.

After the initial shock, my reaction was one of determined faith. I have been a Christ-follower for as long as I could remember. Andy was, too. God has always been good to us–even through life’s tragedies–and we knew Him well enough to know He would never leave us. People rallied around us in prayer and support. We were praying for a miracle. But as time passed and the treatment only seemed to stimulate its growth, my attitude started to change. My faith had turned to frustration. I was angry. Really angry.

God, how could you do this to me? This wasn’t part of the plan! This wasn’t supposed to happen! How could you do this to such a good sweet boy? Why won’t you heal him? Such a horrible, tragic time in our lives. I still can’t think back on it without my stomach welling up into a knot.

Ben-and-JackOur son Benjamin is a twin. His identical brother, Jack, watched the whole thing unfold right before him. Never having navigated a road like this before, we only explained what we felt was necessary for a four-year-old to understand, but he was there through it all. He and his two-year-old sister Megan watched Ben cry in pain at the intense headaches, they watched his hair fall out after the aggressive radiation and chemotherapy treatments, and they saw his desire to run and play outside progressively decrease. He didn’t have the energy to run outside anymore and eventually, he lost his ability to walk completely. Hospice nurses set up a bed in our living room so we could care for him at home. Ben slept at odd times of the day which meant we had to keep the other kids quiet. He gained a lot of weight in his face and torso because of the steroids that were helping to keep the swelling in his brain down. His appetite was through the roof. He grew very moody. And anxious. We couldn’t allow people to come over because he grew agitated at their presence. It got to a point where Andy and I couldn’t even leave the room to use the bathroom. Such a change from our sweet, easy-going goofy little boy. Our peacemaker, the one who acted as the go-between the siblings. It was absolutely heartbreaking.

We were still praying for a miracle. And though we never lost sight of that hope, it was miserable to realize the horrific possibility: we were watching our son die.

Ben-at-beachIt ended up being about ten weeks from Ben’s diagnosis to the day he took his first heavenly breaths. A mere three months. In some ways, it felt like forever. In other ways, it didn’t feel long enough. Parts of me refuse to acknowledge it even happened at all. Those months were the darkest of my entire life. Newly pregnant, caring for two other healthy kids, and ushering my sweet second-born into his heavenly home. Oh, the emotions that conjures up even as I write those words.

The disconnect from my mind and my heart has seemed vast at times. There are things that I know in my mind to be true: God is in control. Heaven is real. Ben is no longer in pain. And yet my heart says, but what kind of God allows this to happen? How could He not spare him? And why do I need to be grateful that my son is no longer in pain? It’s just not fair! I’m finding that much of my grief journey is a constant battle between my mind and my heart.

I’m learning, though. I’m learning that it’s okay to be angry. Frustrated. Sad. Joyful. Sometimes, all within a matter of moments. God is God and I am not. I’m learning that it is normal for sadness and joy to exist at the same time. I’m realizing that grief is not a linear path but rather, a complicated labyrinth. I’m learning to extend myself–and my husband–some grace. To not be so hard on ourselves. To applaud ourselves for getting out of bed some days. For taking a shower. For planning for tomorrow. And to look for ways to encourage others. Because we’ve found there’s no greater way to pull ourselves out of a deep emotional pit than to think of how we can come alongside someone else who is struggling.

We are still learning. I can’t imagine ever getting to a point where we will be done. Where we will have learned everything God wants us to know. But I’m not going to stop trying.

It’s been nineteen months since Ben died. I miss him like crazy. Every single day. His face is wrapped around every memory in our history: raising twins in the city, welcoming another child, moving to the suburbs and then getting pregnant with Kate just before the headaches started. His pictures are hanging all throughout my house. I see his dimples in his brother’s face, his sparkle in his brother’s eyes. Many times, I laugh when I see his picture, at the goofiness of his actions or the gentleness behind his sweet hugs. Other times, tears start falling without me even realizing. I hate the fact that Andy and I are Bereaving Parents. That Jack is a Twinless Twin. That Kate is a Rainbow Baby because she was born after her brother died. That Megan no longer has her protector. I hate it. I totally hate it.

But after I’ve cried my tears of sorrow, God wipes them away. He lets me cry, get it all out. And He just holds me. Sometimes, I can physically feel the weight of His arms wrap around me as I lay awake at night. Comforting me. And whispering words of peace. And if I listen closely, I would know that He was weeping with me. Because the God that I know is a good God. A God of life. And I know that He knows my pain because He lost His Son, too.

I never asked for this. Never in a million years would someone ask for this. Never. And yet, my family doesn’t have the corner on the market on tragedy. So many families have been asked to walk other difficult roads. But even if I were to try and turn around I could never undo what has been done. And so we walk. One foot in front of the other, one day at a time, one moment at a time. Until the day that God calls us home.

Mindy (Albrecht ’03) Sauer is a former sixth-grade teacher, staying at home with her children and her husband. The Sauers live in Clarence Center, NY, and are very grateful for God’s provision.

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  • Bill King says: December 18, 2015 at 6:51 pm

    Thank you.

  • Sheila says: December 18, 2015 at 7:02 pm

    Your honesty and vulnerability is so welcoming. Thank you for allowing us to pray for you and share in your pain. God is bringing something good from something so horrible. I will be so honored the day I meet your Ben. In God’s Love, Sheila

  • Tammy Sams says: December 18, 2015 at 11:34 pm

    Slowly slowly, the pain and anger ease with time. I lost my niece, Holly, an identical twin, a baby B, six weeks after my identical twin boys were born. She was a healthy six year old who started to have symptoms and was diagnosed with a brain stem glioma. This was in 1994, she died 10 months later. (10 months of hell I pray I never have to watch again). Who knew you could cry in your sleep? Or cry without realizing you were crying? At work, at the grocery store, during a nighttime baby feeding, at a parade, shocking how many tears a human can shed!!! I’m praying for you, I’m a friend of Melody Weaver. Oh those baby B’s. Mine is 20 and had a MAJOR surgery last January to repair a fail of a major surgery he had when he was 3# and 23 hours old. I thank God every day for letting my baby B live. I can’t understand why my brother lost his and you lost yours. It’s a question for when I get to heaven. At the time I felt like my baby B was a sorry consolation prize for what we’d lost. How foolish I was!!!!!!! May the God of all peace bring you comfort, all I can say is that it never fully goes away, but it eases. For me, the anger left first. I will pray for you

  • Sara says: December 19, 2015 at 1:34 am

    I followed your story on FB and find myself still praying for you and your family. And will continue to do so.

  • Michael and Victoria Hoyt says: December 19, 2015 at 4:57 am

    Love you guys and I wanted you to know that your always in our prayers. ..I wish I could journal the way that you do for Vicky and I are taking care of my mom with alzhiemers and my used to be very strong dad who is now disabled…you’ve coined the phrase your new normal…well I guess this is our new normal..thanks again for your honesty

  • Sarah says: December 19, 2015 at 9:43 am

    Thank you.

  • Judi says: December 19, 2015 at 4:30 pm

    God Bless you and your sweet family as you continue this journey.
    It is not an easy road you are traveling but, I am glad to hear how you feel God walking through this with you.

  • Jenn Miller says: December 19, 2015 at 6:17 pm

    May God continue to bless you Mindy. Thank you for sharing your heart and being real about your faith walk. Jenn

  • Betty Carpenter says: December 20, 2015 at 4:00 am

    My son died suddenly 29,almost 30, years ago. He was 15. He died because the flu virus attacked his heart and destroyed it while we never knew what was happening. He went to school one day and never came home. We never got to say goodbye. I understand the anger at God. I also now understand the depths of God’s love for me that He would sacrifice His only son that I might have eternal life. How great is that love! This journey is still heartbreaking and painful but God is always here to hear my sorrow and wipe my tears. And I trust in His promise that we will be joined together once again in heaven to rejoice and praise God for his love. Without that promise and hope, I could not face the days ahead. May our God give you strength.

  • Lisa Berryment says: December 20, 2015 at 3:01 pm

    Thank you for sharing this, Mindy. Our tragedy is still fresh as my beloved niece passed just 2 months ago after a 4 year battle with glioblastoma. She was 22 and her cousin Daniel (my son), a freshman at Houghton, endured the sorrow while making it through his first semester. It was very difficult for me as his mother to have him so far away to process his grief on his own, but there was great comfort knowing that he was in caring, Christian community at Houghton.

  • Lori says: December 21, 2015 at 8:59 pm

  • Anna Whiston-Donaldson says: January 5, 2016 at 4:09 pm

    I am so very sorry you are walking this road, Mindy. Your essay so beautifully articulates the feelings associated with being a bereaved parent and a Christian.

  • Laura says: January 5, 2016 at 6:07 pm

    This grief does come in waves. I lost my 7 month old 13 days ago after a tough battle with various issues brought by her genetic syndrome Wolf Hirschhorn. Like you I’ve questioned those who say “At least she is no longer in pain”. I’m always thinking “Well it isn’t fair she went through pain in the first place!” I’ve just started realizing little by little that this grief and pain is never going away, but I’m praying that it get’s bearable eventually… that it get’s to the point were eventually I can go more than an hour without breaking down and crying and feeling this heaviness in my chest. Hopefully one day I can just think of the happy times without reliving the painful ones over and over again. My prayers to you.

  • Marylene Rizzo says: January 6, 2016 at 1:42 am

    We lost our daughter Julianna Rose, on January 23, 2002. She had the flu,as we all did, but unexpectedly she passed, and we were devastated. I had a 1st grader,and a 4th grader, girls at the time. Little girlies and their sister was gone. I admire your devotion to Jesus. I feel as tho I wouldn’t have survived it it wasn’t for him,but I still struggle. We were blessed with a son,Frank, in 2003. I guess our rainbow child. Blessed beyond belief, miss Julie. Everyday

  • Jan says: January 6, 2016 at 3:19 pm

    Thank you Mindy for expressing my feelings so well and yet giving hope. I didn’t get to say goodbye to my Josh.. He was 24 and was killed on his ruckus on a back road by a ” distracted” driver… Fortunately for him he died instantly. I can’t imagine he pain of watching Ben’s suffering! Josh and I had a special relationship.. He was the peacemaker between the other two boys and was so lighthearted and fun to be around! I am in an anger stage and still asking God why even though I have faith and believe I will see him again one day… I’m just mad right now… Others want me to say things are better… They are I guess because I’m still here but everything is colored by the loss.. On 4/11/14… A day where I lost part of my heart and soul forever …. Thanks for sharing your journey and I pray for your family and all those who mourn the loss of a child…

  • Jill says: January 6, 2016 at 8:46 pm

    I can only imagine how difficult it was to write this, but it was beautifully written – full of hope and truth. Thank you for sharing such a personal experience.

  • Sherry Palmucci says: January 7, 2016 at 3:16 am

    Thank you for sharing so poignantly and honestly. The Joy of the Lord is your strength! Neh 8:10. Your story and your willingness to share it is a gift to many. Keep the faith!

  • Alisa Jeremica says: January 7, 2016 at 4:03 pm

    Thank you so much for sharing your story. We walk that same painful road with you. We never really got to know our angel but we still miss her everyday. We had ID twin girls in June. Evee was born healthy and happy, Emmy (my baby B) was still born, passing away several weeks before birth. While we didn’t watch her suffer, we suffered for her, watching her sister grew every week in ultrasound and seeing her lifeless little body, her still little heart refusing to beat again. We worried everyday for the survival of her twin. We know we are so blessed to has Evee. They she was born full term and is escaped all the serious risks she was under because of her situation. We are grateful to watch her grow and see her sister in her eyes and her smile and her crazy hair. Every day is a struggle. I agree. J would never chose this path. All I can do now is embrace the new me. To make the best of the changes she has made to my life and my heart. My therapy now is helping other families that have lost a twin in utero to prepare for their Angel’s arrival. This is my project and my healing. Pictureustogether.org . I pray for peace for you and your family. Thank you again for sharing.

  • Tessa McDonald says: January 7, 2016 at 6:44 pm

    I’m sitting here in the nicu department of UCSF with our baby B. Our baby A passed away in the womb, just before baby B was delivered at 29 weeks. Tears are rolling down my face. Your words are pure and beautiful. You describe the mourning of your son so perfectly. We as well are trying to navigate through this and have found out that there are different degrees of mourning. Some mourn a lost pregnancy really early, a still born, a young child, a teenager-they are all children. The degree in which we mourn is different but the pain is the same. You are a gift to those around you. Your entire family is. May God continue to hold you close.

  • Linda Bolt says: January 13, 2016 at 11:42 pm

    Thank you for writing this honestly and openly. Over the past year, our 23 year old son has been fighting a rare pediatric sarcoma that is not considered curable. Thank God, he is doing well at the moment. This experience has opened my eyes to the young parents who have very young children with cancer, and it is absolutely heartbreaking. I don’t have many answers, either, but I appreciate your staying strong in your faith, even in the face of this unimaginable loss.

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