breathtaking

During the summer of 2000 I found myself on the island of Grand Cayman taking a two-week certification course for scuba diving. I was 30 years old and “highly” stressed out. Oh, my life was full of woe back then, for I had just completed my MBA at the University of Denver and had to leave my beloved Summit County, Colorado (where it is extremely difficult to earn a salary strong enough to pay off an MBA) for my former home of Central Ohio. Yes, I moved back home. With my parents. And as I stated above, I was 30.

To my credit, however, I picked up the adulting gig pretty quickly. Within a year I was an HR manager making a respectable salary, got a spouse, a baby, a reasonably priced starter home in the suburbs… all within a year. It certainly wasn’t the vision I had for myself when I was in Grand Cayman “recovering” from my life as a student in a ski town, but I was making it work. And despite never wanting to be anywhere near infants/toddlers/anything-that’s-sticky, I found motherhood to be quite compelling. I was completely captivated by these little nuggets of joy.

So what, Sarah? We’ve all heard this story before. We know you’re sad because you never thought you could love someone like you love your children and how cruel this life has been because you have to sit and watch them hurt knowing there’s not a thing you can do for either one of them. We know.

I know. I’m just making conversation because I think I’ve forgotten how to do it. I see people in public and words form in my brain but my mouth can’t process it so I say a word like “moop” and realize how ridiculous it sounds and burst into tears. At Safeway. Or the bank. Or in the kitchen. Anywhere, really. I never know when it’s going to come.

It feels like we were introduced to this hospice team a million years ago. It’s amazing how quickly they become a part of the family, like they’ve been around forever and know every intimate detail of your dirty life. But they aren’t there to expose it. They aren’t involved because they’re nosy. They aren’t in it for the juicy gossip. They’re in it because it’s the end of someone’s life and someone has to be there to do it with grace. That’s not me at this point. I’m not doing this with grace. I can’t fucking stand this. But I want to soak in every minute because that’s all there is.

That’s all there is.

And why I was remembering my unpaid sabbatical in Grand Cayman was because it taught me something vital: how to breathe. And, God, isn’t that trite… just breathe, dear Sarah, just breathe. But dammit if it doesn’t work. Breathing works. It keeps us alive. And for the times that our body is too overwhelmed to do it on its own, you die for a second and then remember why you’re here… to keep breathing another day. At least until you’re out of breath.

I learned underwater that when you find the perfect balance, as you inhale, you rise. When you exhale, you sink. Of course, this life is so out of balance there’s a lot of kicking and flailing about, but bringing your mind back to the breath will eventually bring you through. Move forward through the water. Inhale; rise. Exhale; sink. A pattern with momentum and that much control will have you flitting through life like a mermaid. If only I could find a pattern.

I’m quietly watching as my son’s breath runs out. And that is excruciating. Some days I don’t want to. Then I remember that this is my flipping journey and I’m not going to miss a moment of it. If I’m supposed to sit by my son’s side as he slips off this mortal coil, then I’m in 1000%. I will breathe through it. Just like I breathed through his birth, I will breathe through piece of the journey, too.

When the nurse on-call tells you it’s time to open the “comfort kit” you’ve stored in the refrigerator for when things take a turn for the worse, just breathe.

When they suggest buying very dark sheets so you won’t be shocked by the amount of blood loss, just breathe.

When he finally asks for a tiny bit of comfort and lays his head on your shoulder just like he did when he was a toddler, just breathe.

End of life is still a part of life, friends. And even though the breathing gets more difficult, we’re still alive.

Keep breathing.

Comments

68 responses to “breathtaking”

  1. Cheri Avatar
    Cheri

    Wow. You are amazing and so wise. lead the way, bens mom. Lead the way.

  2. Patricia Riebel Avatar
    Patricia Riebel

    Wow I so needed this today Just breath !!

  3. Patricia Riebel Avatar
    Patricia Riebel

    Wow I so needed this today Just breath !!

  4. linda lopez-sadaoui Avatar
    linda lopez-sadaoui

    Sarah I still and will always pray for all the Bens in the world we love you all.

  5. linda lopez-sadaoui Avatar
    linda lopez-sadaoui

    Sarah I still and will always pray for all the Bens in the world we love you all.

  6. Carol Merz Avatar
    Carol Merz

    You’re in my heart and on my mind unceasingly. May God comfort and protect you.

  7. Carol Merz Avatar
    Carol Merz

    You’re in my heart and on my mind unceasingly. May God comfort and protect you.

  8. Jeanne Shellabarger Avatar
    Jeanne Shellabarger

    Sweet Mama….your grace and strength is beyond belief!! Your words so inspiring and yet so heartbreaking. Soak in every breath, every second you have with your baby boy! Etch them in your heart and mind..these will help you take those breaths. I am so sad for you! Please know I pray for you and your family. It isn’t the same but may it help in some way to know you are not alone. Jeanne

  9. Jeanne Shellabarger Avatar
    Jeanne Shellabarger

    Sweet Mama….your grace and strength is beyond belief!! Your words so inspiring and yet so heartbreaking. Soak in every breath, every second you have with your baby boy! Etch them in your heart and mind..these will help you take those breaths. I am so sad for you! Please know I pray for you and your family. It isn’t the same but may it help in some way to know you are not alone. Jeanne

  10. Gabriele Baca Avatar
    Gabriele Baca

    Oh my friend
    I’m reading your post , and I’m in tears !! I know and feel evey emotion of what you are going through right now !
    This breathing “thing “ should be a normal body function, happening naturally right ??? But what you are going through right now , the things you have to think about , the steps you have to take to be able to not lose your “shit” is one of the most difficult task that your brain will ever have to deal with ! And on top of it all , you need to tell it : keep breathing!!
    I read the other day : the reason the fear and grief is coming in waves over time , if it all would hit us at once: it would kill us instantly!
    Nothing can make this any easier and there are no words or “advice , instructions “ that will make this any easier ! But you got it right : keep on breathing, and to your amazement, you will be able to function!
    I’m still trying to remind myself to take those breath when my mind wants to stop it all ! Even after more then 4 years!
    Love and more love to you and your family

  11. Gabriele Baca Avatar
    Gabriele Baca

    Oh my friend
    I’m reading your post , and I’m in tears !! I know and feel evey emotion of what you are going through right now !
    This breathing “thing “ should be a normal body function, happening naturally right ??? But what you are going through right now , the things you have to think about , the steps you have to take to be able to not lose your “shit” is one of the most difficult task that your brain will ever have to deal with ! And on top of it all , you need to tell it : keep breathing!!
    I read the other day : the reason the fear and grief is coming in waves over time , if it all would hit us at once: it would kill us instantly!
    Nothing can make this any easier and there are no words or “advice , instructions “ that will make this any easier ! But you got it right : keep on breathing, and to your amazement, you will be able to function!
    I’m still trying to remind myself to take those breath when my mind wants to stop it all ! Even after more then 4 years!
    Love and more love to you and your family

  12. Aimee Reeves Avatar
    Aimee Reeves

    Beautiful

  13. Pam Avatar
    Pam

    Oh Sarah, I read this twice because I realized I was holding my breath the first time. I don’t know you but I love you, I love the mother and friend you are to Ben and Maddy. I love your strength and your willingness to share your pain. You are a rock star Mom.

  14. Pam Avatar
    Pam

    Oh Sarah, I read this twice because I realized I was holding my breath the first time. I don’t know you but I love you, I love the mother and friend you are to Ben and Maddy. I love your strength and your willingness to share your pain. You are a rock star Mom.

  15. Sue kreft Avatar
    Sue kreft

    I so love your spirit and words. Your amazing Sarah! Big hugs for all. Always in our prayers

  16. Sue kreft Avatar
    Sue kreft

    I so love your spirit and words. Your amazing Sarah! Big hugs for all. Always in our prayers

  17. Marie Winters Avatar
    Marie Winters

    Sarah, I’m so sorry.

  18. Marie Winters Avatar
    Marie Winters

    Sarah, I’m so sorry.

  19. Mary Kay Beall Avatar

    Melva sent me your recent comments…a stunning and heartwarming reflection on the sanctity and power of life and the sanctity and power of death. I am, like so many others, unable to say with truth, “I know what you mean!” because most of us cannot really know what you are experiencing but “Thank you so much ” for helping us to share your thoughts and to get a glimpse of the joy and pain of life in the shadow of death. Rev. MK Beall

  20. Mary Kay Beall Avatar

    Melva sent me your recent comments…a stunning and heartwarming reflection on the sanctity and power of life and the sanctity and power of death. I am, like so many others, unable to say with truth, “I know what you mean!” because most of us cannot really know what you are experiencing but “Thank you so much ” for helping us to share your thoughts and to get a glimpse of the joy and pain of life in the shadow of death. Rev. MK Beall

  21. Tina Avatar
    Tina

    I’ve got a tattooon my wrist as a reminder “just breathe”. I get it. I love you. ❤️❤️❤️😭

  22. Tina Avatar
    Tina

    I’ve got a tattooon my wrist as a reminder “just breathe”. I get it. I love you. ❤️❤️❤️😭

  23. Sara Schmidt Avatar
    Sara Schmidt

    Sarah, you are amazing. Your kids are amazing. I can not even fathom what you’re going through but I do know that you are PRESNT. You are all in, 100% for those kids. You, Ben, and Mandy are always in my thoughts and prayers.

    1. Sara Schmidt Avatar
      Sara Schmidt

      *Maddy. Sorry for the typo

  24. Sara Schmidt Avatar
    Sara Schmidt

    Sarah, you are amazing. Your kids are amazing. I can not even fathom what you’re going through but I do know that you are PRESNT. You are all in, 100% for those kids. You, Ben, and Mandy are always in my thoughts and prayers.

    1. Sara Schmidt Avatar
      Sara Schmidt

      *Maddy. Sorry for the typo

  25. Kelly Hickler Avatar
    Kelly Hickler

    Thinking of you today my friend. XOXO

  26. Kelly Hickler Avatar
    Kelly Hickler

    Thinking of you today my friend. XOXO

  27. Andrea Schropfer Avatar
    Andrea Schropfer

    So many emotions, so many breaths, the ups and the downs, the in and the outs. Sarah, my hugs and love pour out to you, Mady and Ben. Hang in there Strong Momma Bear. Praying for peaceful transitions.

  28. Andrea Schropfer Avatar
    Andrea Schropfer

    So many emotions, so many breaths, the ups and the downs, the in and the outs. Sarah, my hugs and love pour out to you, Mady and Ben. Hang in there Strong Momma Bear. Praying for peaceful transitions.

  29. Vicki Roles (O'Brien) Avatar
    Vicki Roles (O’Brien)

    You have been a friend of mine for many years and I am so sorry that I cannot be there to breathe with you Sarah. I cannot even fathom how hard a deep breath must be to take.
    I love you very much! Your beautiful family continues to be in my prayers. 💜

  30. Vicki Roles (O'Brien) Avatar
    Vicki Roles (O’Brien)

    You have been a friend of mine for many years and I am so sorry that I cannot be there to breathe with you Sarah. I cannot even fathom how hard a deep breath must be to take.
    I love you very much! Your beautiful family continues to be in my prayers. 💜

  31. Pat Hinte Avatar

    Praying without ceasing for all of you May the Lord continue to hold you in the palm of his hand.

  32. Pat Hinte Avatar

    Praying without ceasing for all of you May the Lord continue to hold you in the palm of his hand.

  33. Tammy Avatar
    Tammy

    Nothing but love friend. ❤

  34. Tammy Avatar
    Tammy

    Nothing but love friend. ❤

  35. Kellie Avatar
    Kellie

    Sarah,

    you are amazing…..it’s something else to see how eloquent you express all the feelings, emotions we go through when we are walking this ugly path with our child. It’s been 19 years since my son lost his battle and I wish I had been able to articulate (and document) our journey as you have. Ben and Maddy are so lucky to have you.

    hugs
    Kellie

  36. Kellie Avatar
    Kellie

    Sarah,

    you are amazing…..it’s something else to see how eloquent you express all the feelings, emotions we go through when we are walking this ugly path with our child. It’s been 19 years since my son lost his battle and I wish I had been able to articulate (and document) our journey as you have. Ben and Maddy are so lucky to have you.

    hugs
    Kellie

  37. Cheray Holmes Avatar
    Cheray Holmes

    Oh my dearest, we love you and your family with all our heart. i lost my mom to cancer last year. I’m still in denial because she had beaten it before and no one said this is the end. I am in no way comparing Ben to her. She had a wonderful life. Ben has truly been jiped. I have prayed for you all for years. Through the good and bad. My prayer now is that Ben won’t be scared, that you all will get through and that my beautiful mommy will be there to rap her arms around him. She knew of Ben and your family. God love to you all. Wish this wasn’t the outcome. 😔😚

  38. Cheray Holmes Avatar
    Cheray Holmes

    Oh my dearest, we love you and your family with all our heart. i lost my mom to cancer last year. I’m still in denial because she had beaten it before and no one said this is the end. I am in no way comparing Ben to her. She had a wonderful life. Ben has truly been jiped. I have prayed for you all for years. Through the good and bad. My prayer now is that Ben won’t be scared, that you all will get through and that my beautiful mommy will be there to rap her arms around him. She knew of Ben and your family. God love to you all. Wish this wasn’t the outcome. 😔😚

  39. Donna Smerker Avatar
    Donna Smerker

    Much love to you

  40. Donna Smerker Avatar
    Donna Smerker

    Much love to you

  41. Sandi Rectenwald Avatar
    Sandi Rectenwald

    Just jumping in. Praying…

  42. Sandi Rectenwald Avatar
    Sandi Rectenwald

    Just jumping in. Praying…

  43. Terry C Avatar
    Terry C

    Oh dear God please watch over Ben and his family. This is heartbreaking to hear but I admire your courage and strength. So many of us can learn from you keep writing, your beautiful! Terry C

  44. Terry C Avatar
    Terry C

    Oh dear God please watch over Ben and his family. This is heartbreaking to hear but I admire your courage and strength. So many of us can learn from you keep writing, your beautiful! Terry C

  45. Jennie Rilinger Avatar
    Jennie Rilinger

    So sorry. I will pray for strength and peace for you and yours.

  46. Jennie Rilinger Avatar
    Jennie Rilinger

    So sorry. I will pray for strength and peace for you and yours.

  47. Connie Buhlke-Hassan Avatar
    Connie Buhlke-Hassan

    Oh Sarah….no words. We love you all. 💔💔💔💔

  48. Connie Buhlke-Hassan Avatar
    Connie Buhlke-Hassan

    Oh Sarah….no words. We love you all. 💔💔💔💔

  49. Connie Buhlke-Hassan Avatar
    Connie Buhlke-Hassan

    Oh Sarah….no words. We LOVE you all!!!! 💔💔💔💔

  50. Connie Buhlke-Hassan Avatar
    Connie Buhlke-Hassan

    Oh Sarah….no words. We LOVE you all!!!! 💔💔💔💔

  51. Patti Avatar
    Patti

    Love you ❤️

  52. Patti Avatar
    Patti

    Love you ❤️

  53. Kathy Avatar
    Kathy

    Today I recognize the 8 year anniversary of my 26 year old son’s death. It was suicide. After reading your journey, I wonder, maybe it was a blessing not knowing death was nearby. Or knowing it was his decision and not a curse if this world. I witnessed his emotional pain his whole life. But his last few days were happy and he left us with wonderful pictures to remember. I don’t understand either of our journies except somehow we carry on. May God hold you in his peaceful arms and carry you through this heart breaking time. Yes, breathing is a must ❤

  54. Kathy Avatar
    Kathy

    Today I recognize the 8 year anniversary of my 26 year old son’s death. It was suicide. After reading your journey, I wonder, maybe it was a blessing not knowing death was nearby. Or knowing it was his decision and not a curse if this world. I witnessed his emotional pain his whole life. But his last few days were happy and he left us with wonderful pictures to remember. I don’t understand either of our journies except somehow we carry on. May God hold you in his peaceful arms and carry you through this heart breaking time. Yes, breathing is a must ❤

  55. Lucy Perlin Avatar
    Lucy Perlin

    Your words are so powerful…this is so incredibly raw, and real, and profound…my heart breaks for you so much, Sarah…I wish I could say something wise to soothe your pain, even if just for a moment, but I have no words…just love and prayers…so much love and so many prayers…xo

  56. Lucy Perlin Avatar
    Lucy Perlin

    Your words are so powerful…this is so incredibly raw, and real, and profound…my heart breaks for you so much, Sarah…I wish I could say something wise to soothe your pain, even if just for a moment, but I have no words…just love and prayers…so much love and so many prayers…xo

  57. Carol Kupp Avatar
    Carol Kupp

    No words….lots of tears, deep breathes, & soooo damn many hugs around you, Ben, & Maddy 🙏🏻😓

  58. Carol Kupp Avatar
    Carol Kupp

    No words….lots of tears, deep breathes, & soooo damn many hugs around you, Ben, & Maddy 🙏🏻😓

  59. Leslie Avatar
    Leslie

    Sarah – I knew you were special for the day I met you (the new mom with the HR job and house in the burbs). So special that God gave you the gift of Ben and the spirit (and spunk) to see this through with amazing grace. Thank you for sharing your journey with us, we all love you very much.

  60. Leslie Avatar
    Leslie

    Sarah – I knew you were special for the day I met you (the new mom with the HR job and house in the burbs). So special that God gave you the gift of Ben and the spirit (and spunk) to see this through with amazing grace. Thank you for sharing your journey with us, we all love you very much.

  61. Nancy Ritchie Avatar
    Nancy Ritchie

    I feel as though I know you and your precious son. I’ve been following your journey on Facebook. Celebrating the good times with you and feeling pain for all of the suffering you’ve endured. One thing that always shines through is your love for Ben and Maddy. You are a wonderful mother Sarah.

  62. Nancy Ritchie Avatar
    Nancy Ritchie

    I feel as though I know you and your precious son. I’ve been following your journey on Facebook. Celebrating the good times with you and feeling pain for all of the suffering you’ve endured. One thing that always shines through is your love for Ben and Maddy. You are a wonderful mother Sarah.

  63. Lynn G. Avatar
    Lynn G.

    I have missed hearing your voice on this page. You have such an amazing gift with translating heart emotion and feelings into the most stunning picture – even if tragically beautiful. I will never not think of you all when I hear Blackbird, or need a reminder of what true strength looks like. You guys are permanently etched into my heart and my families hearts and I’m thankful for that. Holding you all close in thoughts and prayers as you are going through the unimaginable.

  64. Lynn G. Avatar
    Lynn G.

    I have missed hearing your voice on this page. You have such an amazing gift with translating heart emotion and feelings into the most stunning picture – even if tragically beautiful. I will never not think of you all when I hear Blackbird, or need a reminder of what true strength looks like. You guys are permanently etched into my heart and my families hearts and I’m thankful for that. Holding you all close in thoughts and prayers as you are going through the unimaginable.

  65. Candyce McCann Avatar
    Candyce McCann

    Oh, Sarah. As I read this, I kept thinking about the pictures of Ben, always smiling, even in the photos of “Oh, Mom – not again…”. And those of Ben and Maddy – priceless. I have followed Ben’s story for a number of years, and as such, have followed you. You have always given us a glimpse into the raw emotions of a family whose child has fought cancer for a hundred years – or so it seems. I am just heartbroken as Ben’s “girls” surround him now. But I know that the love the three of you have will pass from one to another, reminding each other to breathe.
    With love and admiration from Virginia….

  66. Candyce McCann Avatar
    Candyce McCann

    Oh, Sarah. As I read this, I kept thinking about the pictures of Ben, always smiling, even in the photos of “Oh, Mom – not again…”. And those of Ben and Maddy – priceless. I have followed Ben’s story for a number of years, and as such, have followed you. You have always given us a glimpse into the raw emotions of a family whose child has fought cancer for a hundred years – or so it seems. I am just heartbroken as Ben’s “girls” surround him now. But I know that the love the three of you have will pass from one to another, reminding each other to breathe.
    With love and admiration from Virginia….

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