I Know the Exact Moment I Lost Hope

They say there are five stages of grief. I suppose there’s science behind it and the framework holds true for many people, but I’ve only known one stage since we first learned four months ago that Stephanie’s life would be cut short… heartbreak. It’s what I immediately felt on that cold Sunday morning in late January when we learned she had a rare liver disease, Primary Sclerosing Cholangitis. It’s what I continued to feel when she didn’t respond to traditional treatments. It’s what I felt when her third biopsy finally confirmed our worst fears and we learned there were no treatment options. And heartbreak is still what I felt this afternoon as we worked so hard to get a few bites of food to stay down after days of nausea and vomiting.

Over the last four months, the odd companion to my heartbreak was hope. Despite the constant blows, each morning I opened my eyes expecting some brightness to emerge, some little joy to unfold in the middle of all the horror we were facing. And more times than not, it did. Even when we learned Steph’s bile duct cancer was too advanced for the scant treatment options available for this rare disease, I had hope we would find a way to make the best of her remaining months.

So, off we went to Vanderbilt earlier this month for a procedure to internalize two of Steph’s biliary drains and hopefully improve her quality of life. Shedding two of the bile bags was expected to reduce her pain, improve her mobility and make everyday life a little easier. But the procedure was only partially successful in that her cancer had spread much faster than they had anticipated, and it was no longer possible to stent major sections of her liver. They did their best to get some bile flow through the remaining healthy lobes of her liver and then in the gentlest way possible, they told us there was nothing more they could do for her.

After a few days of recovery, she gained strength and her spirits improved – one bag was certainly better than three. But too quickly the positive momentum started to vanish. Since then there has been no such thing as a good day, so we learned to cherish the few good hours we were intermittently granted.

Heeding the warning signs, we contacted Hospice a week ago to set up the support system we needed in place for the next phase. I’m grateful I didn’t wait to make that call because over the next couple of days, Stephanie was barraged with nasty symptoms that came out of nowhere to attack her suddenly frail body – nausea and vomiting, blood in her urine and stools, and pain beyond anything she’s ever known.

This past Thursday was Steph’s 31st birthday and cancer’s gift to her was bladder failure. My sweet girl who spent all year anticipating her birthday was robbed of her greatest joy … her special day. I will forever be haunted by her looking up at me through teary eyes and mumbling, “worst birthday ever,” as the nurse inserted the catheter.  Thankfully, the excruciating pain she had endured for the previous 48 hours as her bladder function declined, was immediately relieved. But there was no celebrating. As Stephanie watched that catheter bag fill with liquid more the color of Merlot than urine, I witnessed the life fading from her eyes. And along with it, all the hope from my heart.

I’m inadequate against this foe. We all are. In the worst moments this past week I wanted to surrender; I would have gladly given myself up to end her misery. But of course, it doesn’t work that way. Seeing her in such distress, and being helpless to do anything about it, has crushed my spirit. I failed her this week; she suffered too much. At the very time I wanted her to feel nothing but love and comfort, this beast of a disease that she’s never come close to understanding launched a full assault on her already weakened body.

As I’ve sat watching over her in the days since her catheterization, her body too weary to manage much of anything except sleep, my tears have refused to flow. Instead I’ve felt them filling the giant void my lost hope left in my heart. A twisty knot has formed in my chest, the weight of it growing each day. It’s equal parts sorrow for the pain and misery she has endured, and terror that she could experience even more of it. I pray for mercy in her last days or weeks, or God willing, months. Stephanie seems to have so little fight left, and I fear now when she’s needed most, her guardian angel has abandoned her.

I never thought this would be easy. And I certainly never expected we would win. But somehow, I assumed by making the best of the Down syndrome card she was dealt at birth, Stephanie had already paid her dues in this life. I guess I wanted to believe that my darling daughter with such a tender soul that never hurt anyone in her life, would be spared the kind of torture this disease is inflicting. Of course, I know everyone wants that for their loved ones. But life isn’t always fair, and neither is death.

Back to this idea of five stages of grief – denial, anger, bargaining, depression and acceptance. We’re at the point in this illness when people are starting to worry almost as much about us as they are about Stephanie. I watch the professionals try to figure out where I am on the spectrum. Let’s just say I think I confuse them. Denial– I’m far too logical to deny what’s happening right in front of me – I’m more a “deal with it” type of person. Anger– yeah, I’ve had my moments but when did that ever get anyone anywhere? Bargaining– sign me up, but like I said, it doesn’t work that way. Depression– not in my nature to stay down very long. Acceptance– accepting reality is very much in my nature so I got there pretty quickly.

But of course, grief doesn’t end with acceptance. I imagine I’ll be solidly entrenched in heartbreak for the foreseeable future.