Difficult Update on Sweet Mary
I cannot believe it’s true.
I quite honestly have not come to terms with the diagnosis, prognosis and trajectory that has been communicated to me over the past four weeks. It just cannot be true.
Since October 2021, my baby sister has gone through 7 weeks of hospitalization, 3 rounds of double pneumonia, COVID, pulmonary edema escalation and has been in heart failure since this time last year, and went into respiratory failure Christmas 2021. Even after all that, there was hope that she would recover, bounce back, and we could maintain a new (limited) normal. Even with with oxygen support needed 24/7, and needs ramping up every week.
But, then end of July happened. On that road-trip to Chicago that turned into a catastrophe very quickly — resulting in a roundtrip home in less than 24 hours, a mid-way stop at an ER in Louisville and 25 hours in the Vanderbilt ER before she was treated. After 8 days in the hospital, coming home and watching her not recover the way she had been able to previously, her and I both knew something was wrong.
Fast forward to mid-September and she put on 15 pounds of fluid in 3 days from the heart/respiratory failure which landed her/us back in the hospital.
Over the last month, and even more so this last week, we’ve taken in heartbreaking news. The kind that change your whole life. The summary of this hard news hard news is:
Mary’s heart failure cannot ever be fully treated because she is not a candidate for the mitrovalve heart surgery or any other heart surgery.
Mary’s respiratory failure and multiple pneumonia’s + COVID has caused moderate-high damage to both of her lungs.
Her lungs show no improvement since her hospitalization in April.
Her airway has become very compromised and if she needs a ventilator for support at any point, her specialists/medical team do not believe she could come off of it without major long term impact.
She is not a candidate without major, major risk of a heart cath or bronchoscope procedure.
She has developed a very, very rare lung disease called hemosiderosis. Which can only be fully supported or slowed down by replacing the mitro-valve in the heart, of which she is not a candidate.
Ultimately, telling us that she has a few months to a year left to live.
This coming after all of her specialists in pulmonary, cardiac, and internal medicine came to the same joint conclusion; the next time Mary comes down with pneumonia or another infection that escalates requiring a ventilator (of which she was 1 Liter away from at Christmas) would put her in a crisis situation of which there is no life saving measure that would save her quality of life. That plus the addition of continued escalation of heart and respiratory failure.
I still can’t believe it’s true.
While the season ahead of us feels unbearable and heartbreaking, I’ve been reminded through many tears this last week, I am, we are, just walking her home. That because of the God we both love that she will be okay, that I will be okay. But, in the meantime…..there are very hard, beautiful, and difficult days ahead.
Mary is joy, love, wonder, sass and kindness personified and as she goes through this journey, I am committed to ensuring her days are filled with that equal joy, love, wonder and kindness. Because, while my heart is already broken at the very thought of losing her this side of Heaven, I want her to know how deeply loved she is — as these days of escalated illness unfold.
At twenty-eight years old, she has survived three open heart surgeries, weathered three moves across the country (WA-FL, FL-WA, WA-TN), two bad car accidents, not having a healthy or present father, sexual abuse by the same father, over 15 moves, losing her life as she knew it when our mom suffered her stroke three years ago, debilitating psoriasis, severe hearing loss, and so much more. She has been a fighter her whole life, and has only brought love and magic to us all amidst it the scope of her pain.
It’s not time for more than sharing with our communities what is ahead of her, ahead of us — and inviting you into ways to journey with her and I along this next season.
I am praying for as many miracles of minutes, days, weeks, years as could ever be possible — and I equally am praying for her not to suffer.
There are some very tangible ways, if you feel compelled, to support Mary:
Mail: She loves mail; cards, letters, tokens. If you would like to send her mail message me for our address. She loves pink, art, rainbows, movies.
Financial Support: over the next year, I need to employ more robust care until she transitions into hospice care, home support, resources to execute her bucket list of wishes and pre-arrange future end of life plans. I am solely responsible for Mary, and any financial support is deeply appreciated. You can learn more + give here: https://gofund.me/41a15f8f
Prayers: please join us in praying for her healing, for her comfort and peace, for the escalating pain to cease and for me as I walk in step with her through this season. Will you pray for our family? Would you pray for me? This big sister is heartbroken and weary from three years of caregiving, hardship within the world and our family. Would you pray for hope, for peace and for so much miraculous joy.
To those that have already surrounded me and Mar — thank you. Your gifts of presence are appreciated beyond measure.
To those that will come alongside us as these next months unfold — thank you.
We love you,
Suz