Jul 2

Know before you need

Emmanuel nurse Tennille shares a lighter moment with Stephen

As a business owner, I strive to support the organizations Sabo PR represents. I fly exclusively through the Gerald R. Ford International Airport. I shop and dine at Woodland Mall and with the other retailers and restaurants we represent through the Gaslight Village Business Association. I depend on Warner Norcross + Judd for our legal needs. I bank with a longtime client.

I never expected, though, to need the services of Emmanuel Hospice at this juncture in my life – but when I was told in March that my younger brother, Stephen, would benefit from hospice, I turned immediately to Sara Lowe and her amazing team.

We have provided public relations and communications support to Emmanuel since 2016, helping this nonprofit provider of compassionate, person-centered end-of-life care share the tremendous work it does for patients and families in our community. At the beginning of our engagement, Sabo PR created key messages, which I can quote without peeking:

  • Emmanuel begins with the question, “How do you want to live?”
  • Emmanuel relies on an interdisciplinary team, with the patient and family at its center.
  • Emmanuel strives to honor the whole person, body, mind and spirit.
  • Emmanuel recognizes the sacred space families invite them into at end of life.

My initial call was met with caring, concern – and immediate response. Every call I made after that first one was treated in the same way, even those late-night frantic calls where Stephen’s agitation and pain had gotten the better of him and I didn’t know what to do. I did know where to turn – and for that, my family and I are beyond grateful.

For those of you who don’t know, Stephen was born with spina bifida and given a life expectancy of 16. Medically complex, he faced a host of health issues throughout his life, but they seldom got him down for too long. He relied on a wheelchair to get around and, in his final years, a host of nurses and aides to provide the daily care he needed to get up and going.

COVID had sequestered him in a long-term care facility. Like so many families separated by the pandemic, we communicated via Zoom and through windows for 15 months. His admission onto hospice care gave me the ability to see him in person, but after just a few of those visits, I knew I wanted to bring him home for his final days. With Emmanuel as our quarterback and the support of Meca’s Angels, which provided skilled nursing and aide support, and Age-N-Grace, which offered companion care, I was able to do so.

Having Stephen in our home allowed me to work — and to pause when needed

Stephen’s last month with us was punctuated by golden moments – we sat on our deck and listened to frogs and watched for deer. We looked through photo albums and reminisced about our childhood. I made many of his favorite foods – and he sat by me in the kitchen, asking questions as I cooked. We threw the rules out the door when he asked for a gin and tonic at 10 a.m. on a Wednesday morning. We welcomed some of our favorite people for visits. We built a wall of support, posting cards, kid art, letters, poems and other demonstrations of love for Stephen. And I slept by his side for three weeks, just as we did as children, so he would not be alone.

We were not alone – we were never alone. True to its word, Emmanuel Hospice provided a team to support us every single step of the way. From his amazing nurses, Tennille and Sarah, to his aide, Tressia, massage therapist, Joan, music therapist, Miranda, social workers Michele and Brandy, spiritual care giver Sr. Faustina and all the behind-the-scenes folks who answered the phone and provided sanity and support, we were lifted up every day. We received similarly loving care from Amanda, Yasmeen, Kathy and Amy through Meca’s Angels, who treated Stephen with love and respect, even during his crankiest of hours.

When Stephen drew his last breath, I was honored to be at his side – and grateful Tennille and Amanda were with us, Sr. Faustina joining us a short time later. Stephen’s body was washed and prayed over. It was one of the most beautiful, peaceful and sacred moments I have ever been privileged to witness. It was  all that hospice could be – and everything I hoped Stephen’s death would be.

The same was not true when my father passed away in 2010 after eight months of worsening health issues. When his Ohio care facility told me he would benefit from hospice, I took their recommendation. I knew nothing about hospice and was stung at the suggestion my father wouldn’t recover. That decision wound up being a huge mistake – my father was at a for-profit facility that steered grieving families to its for-profit hospice arm, which did the minimum, and not even that at times.

I received no calls, no emails and no visits during his final months when I travelled to spend long weekends with my father. On what would be my last visit, Easter Sunday 2010, I called hospice and asked if I should stay – from my reading, it seemed my father had entered the active dying phase. “Oh, no,” said the nurse via phone, “he’s fine. You go home and come back next weekend.”

So I made the five-hour drive home that afternoon, my heart unsure, only to receive a call from my brother the next morning with the request to hurry back. I missed my father’s final breath by 15 minutes.

Fifteen minutes.

No one from the hospice agency met us at his bedside. Nor did anyone call in the following days after to check on us. Nor did they reach out over that next year to offer grief support or see how we were doing. “If this is hospice,” I remember thinking, “I don’t get why people find it comforting.”

I returned to Grand Rapids the week after the funeral and vowed to educate myself. Through our initial PR work with Hospice of Michigan, I learned the differences between nonprofit and for-profit providers. I learned what to expect – and what questions to ask. My knowledge of hospice has deepened through our work with Emmanuel, and I had all the information I needed BEFORE I needed it to make a decision that was right for our family.

There are organizations like Emmanuel that do tremendous work in our community without most of us needing to know they exist. Our former client and community treasure, Mary Free Bed Rehabilitation Hospital, is another prime example – until you or a loved one has a brain or spinal cord injury, stroke, amputation or other life-altering diagnosis, you won’t need them.

The same is true for the Children’s Healing Center, the nation’s first year-round recreation center for kids with compromised immune systems. Since opening its hyper-clean facility in 2015, the Center and its incredible team have provided an oasis for sick kids and their families to connect, play, rejuvenate and be seen as more than a diagnosis.

Guiding Light performs daily miracles through its no-joke addiction recovery program, helping men lost to alcohol and drugs find a way to recover and reconnect – with themselves, their loved ones and their community. But until you love someone struggling with addiction, or know a child with a life-limiting medical diagnosis or have a friend who’s recovering from a car accident, you may not realize these programs and services exist. But oh, when you DO need them, you’ll be grateful and amazed we have such world-class caring people and programs right here in West Michigan.

I know I certainly am.

The last six months have been incredible – and incredibly hard – as we navigated Stephen’s illness and death. Having a strong team of people supporting our family made all the difference in the world. Thank you, Emmanuel Hospice, for being such a tremendous part of #TeamStephen.

18 thoughts on “Know before you need”

  1. Robin K. says:

    What an incredibly beautiful and personal post, Mary Ann. It took bravery to write about your heartache.

    1. Mary Ann says:

      Thanks, Robin. It is always helpful for me to write my way through things. If I can spare even one person the pain of my earlier hospice experience, I’ll be gratified.

  2. Tennille Marie Dobbs says:

    You just can’t find a more genuine vulnerable soul than Stephen Sabo. With everything life threw at him he came through stronger and better for it – in Stephen style of course. I was incredibly honored and blessed by him (yes I know he was sticking his tongue out at me in that picture but it was his love language) and also by both you Mary Ann and Jeff. I will forever hold in my heart those moments, thank you for letting me journey with you to the end – or rather – to his new beginning! #goingrogue #teamstephen #mycaptain #emmanuelhospiceondeck ❤️

    1. Mary Ann says:

      Tennille, it was definitely his love language — and you know you were truly inside the tent when it was directed at you. Thank you, my friend, a million times over for Stephen’s beautiful final chapter on earth. I can truly say I have no regrets. I am beyond grateful for the amazing care, love, support and atta-girls that always were so perfectly timed. Tshirts are coming, I promise! Thank you for being part of #TeamStephen — and continuing to be part of our lives.

  3. Gloria Bronkema says:

    Beautiful ❤️
    We also had Tennille for our end of life for my husband.. We could not have made it thru this time without the Support & Love we had thru Hospics & Tennille…

    1. Mary Ann says:

      Gloria, thank you for taking time to read and comment. I am so very sorry to hear about the loss of your husband. Emmanuel and Tennille are such an incredibly combination — it’s truly hard to put into words. Sending you strength and healing. Mary Ann

  4. Tom Rademacher says:

    This beautiful essay brought me to tears, Mary Ann. Partly because our own mother’s journey was mapped out by Emmanuel Hospice as well.Partly because I have met Tennille and Sister Faustina and know the gifts they and others from Emmanuel bring. But also because I got another glimpse into your heart…sleeping beside Stephen at the last like you did as kids is a postcard I’ll always treasure.

    1. Mary Ann says:

      Thanks for the kind words, Tom. I am grateful your family knew the comforts of Emmanuel and its incredible team — they are truly such a gift. And I have learned so much about writing from you over the years. Thank you for walking alongside me in this chapter and helping me continue to grow. Your friendship is such a gift.

  5. Elizabeth Brink says:

    Just…simply…beautiful. As the first thing I read this morning, it brought tears to my eyes. But it also brought hope and inspiration to live each day with joy, gratitude, and determination. It also was a great reminder to find pleasures in the small things and the beauty that surrounds us all. It sounds like Stephen had an incredible life, and loved his sister with all of his heart. You are not alone as your journey and grief continues. Prayers for healing and comfort. (And a gin and tonic at 10 a.m. every once in awhile!)

    1. Mary Ann says:

      Thanks, Elizabeth. This whole process has reminded me of so very many things, all those you highlight chief among them. While Stephen had his physical challenges, he did live as fully as possible. Cheers to the occasional 10 a.m. G&T!

  6. Nicole Gasper says:

    Wow, Mary Ann…that is the first word that comes to mind… a beautifully raw and genuine tribute to those organizations who wrapped around you during the most difficult of times. I’m sorry for your loss and grateful to learn through your story. Hugs and prayers coming to you.

    1. Mary Ann says:

      Thanks, Nicole. I process best when I’m able to write. And if I can spare even one person from a heartache similar to my father’s passing, I will have been successful. Appreciate your reading and commenting.

  7. Meegan E Holland says:

    Hospice taught me so much when I was caring for my mom. Thank god for their support … and I’m so glad you had an excellent program as well. Thanks for spreading the message about these wonderful non-profit organizations. And again, my sympathies on Stephen’s passing. I’m sure he knew how lucky he was to have you, Jeff and hospice in his life and death.

    1. Mary Ann says:

      Thanks, Meegan — we are so fortunate we were able to have Stephen with us for the last month of his life. I’m glad hospice supported you so wonderfully with your mom’s passing — they so make a difference!

  8. Cathy Cole says:

    Mary Ann, what a beautiful love letter to your brother, the organizations who supported you both and what it means to love wholeheartedly and for a lifetime. It is a tribute to your brother, your family ties and to those who are dedicated to helping others to live through end-of-life. Thank you for taking the time to write this so eloquently and share your story with all of us. May you find comfort in your memories, family and friends to help you through this time. Sending love and support.

    1. Mary Ann says:

      Cathy, thank you so very much for your kind comments. I wrote this the week after Stephen passed as I wanted to capture the memories while they were still vibrant. Thank you for your support and these gentlew ords of comfort from across the pond.

  9. Brian Kolesar says:

    Mary Ann, this was so well written as only you can do. Again, my condolences for the loss of your brother Stephen. We were on parallel journeys, in different states, with our loved ones in Hospice care at the same time. One never knows when that will happen, but when it does, the Hospice process is incredible. Your description of the care and support given through Hospice is so accurate, thank you for building this awareness. Hospice care givers are like angels given access to our homes. I am so glad to have had a similar experience. Thank you again for all the Sabo-PR team did for my Dad during his lifetime and for your kind words of support during his Hospice care. May Stephen and my Dad Rest In Peace.

    1. Mary Ann says:

      Brian, thank you for the affirmation and the kind words. Angels is such a good descriptor — I could not do what this team does, day in and day out. A social worker friend once described a hospice team as river guides, which is so apt. We have far fewer journeys than they do, so we can lean on their guidance for this strange river. Denise and I shared many a text message during both Stephen’s and Bobo’s journeys. I am glad you had the support of hospice for your father’s final days. It was a true honor to know him. I loved the piece from Stormy Kromer, which is a great tribute to a wonderful man.Yes, may they both rest in peace — and may both our families continue to find comfort in their memories and strength from family and friends as we continue to navigate the grief in this new chapter.

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