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.

15 thoughts on “breathtaking”

  1. 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

  2. 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

  3. 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.

  4. 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. 💜

  5. 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

  6. 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.

  7. 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.

  8. 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.

  9. 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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