At the point of the publication of this post, it's been exactly a year since I've began writing this entry. Why has it taken so long? It's hard stuff to share. What does it have to do with The Struggle is Renal? I dunno. I guess it's a hurt, although fairly recent, which has shaped me into the person I've become.
As I write this entry it is a few days before Mother's Day (2022) here in Canada. One of my contrastingly favourite and yet most-hated fabricated holidays.
Favoured because I can convince my husband to shower me with my favourite breakfast foods and I can indulgently nap the day away under the guise of "self-care" and pampering.
Hated, because I was blessed with two mother's growing up: one was my grandmother. A beautiful and flawed woman who is no longer here with me; and my biological mother with whom I have a painful and conflicted history. Currently we're estranged and I'm not sure that will change. (Author's note: as of 2023 we begun communicating again)
Last week the world was shocked by the controversial leaked American Supreme Court documents that indicate that it's about to overturn the Roe V. Wade decision. Effectively reversing the legality of abortion in 'Murica.
Wtf.
Abortion is not a topic in which to indulge at casual gathering of workplace acquaintances, unless you're prepared to open a social can of worms that invites debates, moral judgement and personalized attacks on the scale of a Nordic epic.
In the days and weeks that follow I've read lots of supportive comments. Some negative ones, only when I can't avoid the hate-spew.
Through it all, I've been taken back to the June 2015 and the worst week of my life. On this Mother's Day I choose to share my story for a few reasons:
Because with or without my baby beside me, I'm still his mother. He loved. I knew it. Now others know him too.
It's my gift to myself.
Andrew and I had been married less then three years. Having more children was NOT a goal. At th time we juggling the needs of two small, sweet little undiagnosed gremlins. Life was hectic and crazy. Life was also sad. Earlier in the year my father was diagnosed with terminal cancer.
Allow me to set the scene: a young(ish) mother. Two neurodivergent kiddos under 6. One dying father. And oh, did I mention that I just entered my last semester of university? Plus I was newly accepted to graduate school.
Even though I don't owe anyone an explanation; I feel like it's an important part of my story:
I was not planning on getting knocked up. I was using a reliable form of birth control as prescribed by the doctor. Alas, such measures fail, even when done "right."
We found out early. A fluke really. Routine blood work. Surprise! We were about 4 weeks pregnant. We talked abortion. We seriously considered it. Knew it was likely the responsible option.
But something didn't feel right. We'd had a traumatic pregnancy loss fairly early into our engagement. Something about this pregnancy told me I wanted this baby. So we waited out the first trimester- the so called-danger time. We waited to tell our parents. The time came and went and we had our second trimester imaging and testing. All was good.
We made our joy public. Facebook official and everything.
Shortly after my sixth month of pregnancy I started feeling off. Firstly, I hadn't really "popped." Being naturally fluffy that didn't freak me out. I felt the baby move. The baby, a HE I knew him to be thanks to my most recent ultrasound, seemed fine and dandy.
Still niggling doubt sent me to my family doc just for saftety of mind. A few additional tests later I was home again. My father was in his last stages of palliative care at home. Administering his pain meds and seeing to his last days, were the only worries that burdened my mind.
In my bedroom I had begun my nesting. We had selected a sweet little grey homecoming outfit already. We're debating strollers.
He would have been named Robert Gordon Reiche. He would have carried my father's name.
A distinctly stodgy and anglo-Saxon monicur in contrast to his siblings Cash and Nahanni; but the name was his nonetheless.
A few says short of my seventh month of pregnancy I received a phone call from my family doctor.
It was late on a Friday night. Way past casual office hours.
Interestingly, I've known my family doc for a couple decades now. He went to my highschool at the same time as me and he's always been a caring and smart person.
This night, there was no amount smarts or kindness that could blunt the force of the bad-ittude of the news that was coming.
Calmly and kindly, Dr. Jeff told me there was something wrong with my test results.
For a moment we sat in silence. The only sound I could register was the steady thump of my father's oxygen machine behind me.
"I'm sorry Ang. But I think we need to send you to My Sainai's in Toronto ASAP."
As soon as possible turned out to be four days later. Andrew wasn't able to get the day off with such short notice, so one of my oldest and dearest friends accompanied me.
Sitting in the waiting room and later laying on the cold clinic table, I'd never been more thankful for her unyielding support.
I watched Bobby on the ultrasound screen. He was moving but in a slightly peculiar way. The tech was kinda nda. But the strained neutral look on her face gave away the bad news that the attending physician gave me minutes later.
What was originally believed to be hydrocephalus, was something different. Something less treatable. Images revealed several development abnormalities.
My baby had hernias within his chest cavity. His lungs, stomach and vicera were stuffed into his upper rib cavity putting immense pressure on his heart. It was possible to surgically correct. But with immense risk and a low threshold of success.
Worse still, his little brain had a neural tube defect. Not anencephaly, instead Encephalocele. Basically a portion of the baby's brain developed outside of the skull. One in 10, 500 chance of occurrence. What a lottery to win.
Prognosis wasn't good. Long-term sever disability, mental impairment and that was if the multiple brain surgeries were successful.
Combined with the reality of simultaneously needing major reconstructive surgical interventions for his herniated chest issues, the doctor presented a choice.
We could carry the pregnancy to term, rally ourselves for months of emergency life-sustaining surgeries. Should he survive those, years of follow-up surgery and treatment for the rest of his short lifespan. A lifespan that has never exceeded 6 years in any other documented case of similar complexity.
Additionally, he would be in a medically induced coma to deal with the constant pain.
OR
We could choose a medical therapeutic abortion. Late-term it would be done sooner than later and would be done at Mt. Sainai's in Toronto.
What a choice.
Later that day after lunch and an ugly public cry with my friend, I drove myself home to speak with my husband.
That night my mother watched the kids while Andrew and I went for dinner. We ate. Discussed options. Then we got a little drunk.
We decided to terminate.
The decision was the most painful thing we have ever done. But it was the only gift that I had left to give to my baby.
That was June 18th. Our procedure was scheduled the next day for June 22nd, with a pre-op procedure for June 21st.
My entire life when shit hit the fan I could count on one person to guide me through it. My dad.
I wanted nothing more then to go to his room and through myself in his arms and cry myself to sleep. That wasn't an option this time. Nor would it be again.
On the morning of June 20th I awoke to find my dad bright eyed and bushy tailed. He was down right chatty. It was the morning of his 88th birthday.
For the entire length of my life my father HATED his birthday. He'd be a grump in the week leading up to the day. We'd tease him about it relentlessly.
That day in 2015 it made sense. I knew he was leaving me that day.
At 11 AM I made Dad a rye and ginger ale. He'd been sober for years before and after I was born; but I figured one last toast couldn't hurt now. He drank it with a smile and held my hand. He told me how much he loved me. How he would always be with me and that he didn't want me to spend my life crying for him.
"Laugh baby. Remember our good times and laugh."
At 1PM I brought the babies into his room and put them on his bed with him. He cuddled them and hissed thier brows. I was on the stairs to the basement from dropping them off to be with their dad when my mom called out.
2:30 PM dad stopped speaking. 3 PM dad closed his eyes and started laboured breathing.
I held his hand the entire time. A few moments before the end I felt it coming.
"I love you daddy. I love you. I love you. I love you." I just repeated it again and again until he was gone.
The funeral home sent the two smallest, frailest undertakers I've ever seen.
My dad, even lying dead; skin and bones from cancer- was a big man. The undertakers loudly wrestled him into a body bag behind closed doors.
I couldn't stand to hear that struggle. Thinking about his body being handled so.
When they brought the stretcher to the stairs it was clear they couldn't heft his body.
He had carried me so many times in his life. I could carry him on his last day.
We made it to the front door when the little old man at the other end of the stretcher lost his grip.
Daddy's body came crashing down with a boom. And....a fart.
Our bodies are wonderful and gross things. And in that moment I thought how dad and I would laugh like mad men if we were watching it transpire together.
So I laughed. Maybe a little more hysterical then I intended. But I laughed and I cried watching the Hurst drive away that night.
One day later Andrew and I checked into a hotel in downtown Toronto. In another reality it could have been a romantic weekend away; in this one it was a somber Wednesday pre-op appointment.
Arriving at the front doors of Mt. Sainia, we were greeted by a small handful of pro-life protestors. They were handing out flyers with thier philosophical ranting.
Walking by them felt like a punishment in that moment. A cruel, mocking punishment from a make-believe god who was supposed to favour the weary.
After several invasive inspections; at least four new people knew what my vagina looked like and I had been prepped for the next days abortion.
Because my pregnancy was so far along, my cervix needed to be artificially dilated.
I spent the next 16-hours feeling fake contractions readying me for a false birth.
The next morning we checked in. We were brought first to an administrative room, where we were asked our preference for disposal of the body. We were cautioned that it was our choice but the rarity of our case made medical autopsy a major boon to future parents in the same postion. So we opted to donate our child's remains to science.
I barely remember signing the forms.
Andrew was not allowed to go into the operating room with me. I was alone when I was tied to the cold operating table. Tears blurring my vision, I felt the gloved hand of a nurse in mine.
She wiped my eyes and stroked my brow and I cried.
"I wanted him. I wanted him so bad!" I sobbed. "I'm a killer. I'm killing him."
The doctor patted arm.
"I know you wanted him. You aren't a killer. And we are honoured you are trusting us with this. We promise to take good care of him and you." He said. Then he asked me to look at him and breathe like he did. He stood with me and breathed with me and the nurse held my hand as I drifted to sleep.
An hour later I awoke in recovery.
Still crying even in sleep, the hand in mine was now Andrew's. It was him now stroking my head. As I regained my thoughts I noticed the doctor and nurse from the operating room at the foot of my bed.
"We just wanted you to know something. We hope it might give you a bit of peace. While the baby had a heart beat yesterday at pre-op; when we began the procedure there was none. He was already gone."
2 weeks later I went to GBGH for a routine check-up to clear me of any post-op infection. The week before I had buried my father.
Driving to the hospital I passed a dozen picketing pro-lifers with signs reading "abortion is murder" and other horrific claims.
I was overwhelmed with rage and I've never before wanted to swerve my car into a group of people before, but I wanted to that day. I made do with slowing my car down and shoving middle finger out the window.
We are not owed happiness by virtue of being brought into this world. The idea of "fair" and being "owed" equal treatment by some is laughable to me.
Sometimes life is poopy.
We can choose to bear it with grace and optimism or anger and resentment. Either choice is yours to make and endure. I can say from experience that the latter will not magically pressure some mystical superpower to intervene on your behalf. There is no magic wand that will poof away life's evils into a cloud of pixie dust.
A major peeve of mine has developed since becoming terminally ill. Once I came to terms with what my illness meant, I joined several online support forms. Time and again, posts about: "my sister refuses to give me her kidney; it's unfair!" Or "how can I make my relative give me their kidney?" Gave me pause. I've realized life is too short to choose entitlement. To choose misery.
Made a million mistakes in my life, and I don't want another being a hasty proclamation of guilt over another's choice.
Don't be a shit-bird. Keep your negativity to yourself.
If you get the urge to police another person and their decisions try to look at things from their perspective first. I guarantee you don't know better than they do. And your kindness will help a million times more than your negativity.
I will always cherish my memories of my nurse and doctor. I will always hate the memories of how the protestors made me feel.
Don't be a dick. Be kind.
"Actions have reactions don't be quick to judge. You may not know the hardships people don't speak of. It's best to step back and observe with couth. For weeks all must meet our moment of truth." -Guru Gangstar
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