The Unfortunate Traveller Keeps Fighting

Once upon a time, in that naive life before infertility, I thought I was trying to conceive this flower (from a poem I wrote in the summer of 2012):

Somewhere in the manufactured rows of suburbia,
a woman in a wide-brimmed hat, soft in the middle, wrinkles around the eyes,
uses a red-handled spade to gently dig a tiny pocket in the
black loam of the garden in her courtyard.

arriving in soil meticulously tilled.
She nestles a seed into the womb of this soft earth
with tender fingers and a gentle shower from a plastic watering can.
Days flit slowly by and she greets the green shoots of promise with a proud smile,
the delicious anticipation of her creation.

In time, a host of brilliant yellow blooms unfurls in the August sun.

Image by Carol Groenan

In time, however, after multiple chemical pregnancies, repeat IVF failure, and a ruptured tube, I started to draw a warrior-like pride that fueled our tenacity against exhaustion and hopelessness from the realization that my path to conception looked more like this:

Generations of drought, battering winds, lean soil
cruelly stripped the landscape of the weak.
This seed—built by hardship to feast on the wild, unforgiving sun,
to survive the drenching rains that slide in muddy torrents down hillsides—
unwittingly arrives in a flat meadow,
settling into a neighborhood of grasses browned like honey.
It tunnels roots into the earth,
stretches gangly foliage,
snaking through tiny spaces,
until it blooms a broad carpet of flowers,
like orange gum drops,
tiny clementines scattered on the prairie floor,

Image from Dreamstime

And for five months B, Bunny, and I have basked in beams of glory, of victory at long last over the nefarious cosmic and biological forces that nearly robbed us of our dreams. On Monday, as we were wrenched from yet another naive fantasy – the chance for some normalcy at long last – a diagnosis emerged from our 20-week anatomy scan that made us feel, despite our most valiant efforts, more like we had unwittingly cultivated this flower:

The force of an 18-wheeler careening across searing concrete
bends the air and jostles the gossamer threads of a dandelion
thrusting its defiant head from a crack in the shoulder of the road.
In a quiet explosion, the seeds burst and scatter and ride the gust to their fate.

Rainwater washes the road and carries the seeds in a strange river of motor oil, trash, and urine,
depositing one survivor in a sandy crescent forced violently open by the ice of January snows.
It drills deep into the unyielding turf,
sprouts ragged leaves that drink of exhaust fumes,

Image by Martijn de Valk

I can now say from personal experience that the emotions morph and evolve day-to-day, even minute-to-minute after receipt of such news. Of course I feel like we’re trapped in one of the Final Destination sequels where Are you fucking kidding me? and Why me? questions abound because, really, there was a 99.96% chance, according to the prevalence of Bunny’s problem, that this wouldn’t happen. To God or the Fates or the Universe (whatever name you’d like to assign to your vision of spirit), that giant fucking asshole, that juvenile sociopath in the sky who spends sunny afternoons tormenting feral cats and tearing the wings off butterflies as a source of entertainment for his black, rotten heart: we are over. There has never been a more bitter and permanent divorce as you have now crossed the ultimate line, past all chance of forgiveness – you hurt my innocent child.

Inevitably this rage tempers – human beings, animals, are adaptable – and becomes a single shard of darkness in a broader kaleidoscope of response, mostly because we have no choice. Now more than ever, he needs his parents, so adjacent to my persistent rejection of any benevolent interpretation of God lies an acceptance that we have to deal with this reality that’s been thrust unjustly upon the three of us. Unlike some other conditions he could have been diagnosed with – anecephaly or cystic fibrosis, for example – there’s a good chance that Bunny could be perfectly normal in the long-term given highly competent intervention at birth, which means we have to put our energy into choosing a top-notch hospital for his care. The opposing truth of Bunny’s diagnosis is its uncanny quality of being extraordinarily unpredictable, confounding the smartest doctors’ best efforts at prognosis until the baby is flesh and blood in the room and his lungs start to function, so we have no choice but to roll the dice and hold onto hope in an arena of nebulous statistics and virtual uncertainty. I see this as one of God’s most cruel and amusing ironies, to show us unequivocally that he does not have our best interests at heart and then force us into the position of “trusting” him. Well played, douchebag, well played.

Ultimately, as tired as I am of fighting and as depleted as our reserves are, the drag through infertility did force us to develop a certain skill set that prepared us well to meet this challenge. I have become a fierce advocate. I developed a resourcefulness and a knowledge-base that enables me to accumulate a vast education on a medical issue and identify the best treatment in the field quickly and efficiently. I know how to establish a support system outside of my private life, where discretion is best. I can smile convincingly while I’m plodding through hell, which is so essential now, a time when I refuse to allow a birth “defect” to cast a shadow across the joyous anticipation of his life. I am his mother, and I will protect him from that, so in some ways he is the first flower, shielded and nurtured by the gardener.  And while there is no doubt he will face challenges before he’s even cognizant of his fight, we hope he will still prove to be the second flower, with a badge of courage that reminds him for all the days of his life that he possesses a powerful inborn resilience honed across generational struggle.

43 thoughts on “The Unfortunate Traveller Keeps Fighting

  1. A diagnoses? Oh my god. What have I missed? This is…. I can’t even… There are no words to express the unfairness. You are warrior. Keep fighting my dear, I am sending you and Bunny and your family all the strength and love.

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  2. You are extraordinary. I admire you and believe in you.
    Find your best team. Arm up . Be ready. Until then you are still the gardner. Stay in your heart.
    I’m sending you strength and love and outstretched hands from afar.

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  3. No, no, no. This is absolutely unfair. I’m so sorry you’re going through this. That you have to continue to use skills learned during IF on your living child is the bitterest of ironies. Oh, I wish you all the strength, love, and compassion available as you fight for and love your child.

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    • Yeah, there’s what’s deserved and then there’s what’s really happening. I just wish I didn’t constantly have to be the statistic.

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  4. Sigh, the real truth is just that bad things happen, even to people who don’t deserve them.

    I know some of how you’re feeling .. I know you’ll find him the best care and do everything you can to bring him out on the other side as healthy as he can be.

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    • Yes, we’ll do our best, but, sadly, fatality rates are high for this Dx. We also stand the chance of coming home with a feeding tube, which felt very scary for me as someone who has to go back to work eventually and will need to secure daycare. For those reasons, I had thought of reaching out to you, so I’m glad you stopped by.

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      • By all means, if you want to talk, let me know! I’ve done the medically complex newborn (toddler, child) thing, and it’s not an easy road – but they are so so worth it.

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        • Thank you! I will probably reach out at some point…once I know what my questions are. We’re actually choosing between Boston and Philadelphia for care, so I may end up in your neck of the woods when it’s all going down.

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          • I absolutely loved the team we met at the Boston Children’s Fetal medicine program, for whatever that’s worth! We see a bunch of departments there, and there’s a very active fb page for families, full of people who can help point you to (and away from) certain doctors and services. If you decide to head up our way let me know!

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  5. I am so sorry to hear that. I have been following your website for a few months – it has helped and inspired me so much!
    Life can be such an unfair endeavour!
    My thoughts will be with the three of you.

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  6. Oh sweetie. Such cruel chance. I hope the necessary interventions are immediate and complete, and your little one never has to know how scared you were for him. I hope he is as perfect physically as he is in your heart.

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    • Yes, “immediate and complete” would be awesome. With this, the more complicated it gets in the NICU the more collateral damage there is.

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  7. Good grief. How can this be? I’m sorry. So very sorry. If there is anything I can offer by way of support, I am here. I have the utmost faith in you valiant three. You are a tremendous advocate and a fierce mama bear. You are and shall remain in my thoughts.

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  8. I’m so very sorry. To struggle for so long and then to be dealt this hand. It’s just not right. But then again there’s not much “right” with anything you’ve been through. I know you will fight tooth and nail for him…you have to this point so why would the future be any different, right? He is a very lucky Bunny to have you in his corner. (((hugs)))

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    • That makes two of us, though it’s settled in at this point. Now I’m dealing with the labyrinthine clusterfuck that is the American health care system to try to set up good care for the poor little guy.

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    • Aw, I appreciate the offer. We’re @ CHOP today for a work-up and headed to Boston Children’s on Friday. Those are the best of the best, but so much of this is dependent on the little guy and his functioning.

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  9. Oh no my dear IF sister…I’m sitting here gulping my tears trying to make sense out of all of this. Just…no words, haven’t you endured enough already?? We can ask “why” a million times and we will never get an acceptable answer.
    You are an inspiration to so many and your grace and strength in handling this will be your crowning moment. Your boy needs you…and if he takes after moms intelligence, resolve and fighting spirit just a tad then it’s gonna be ok. I can not imagine the pain and confusion you are feeling…and how you want to curse the universe and everything in it… but I just want you to know your going to be OK. No matter the outcome with B you will survive one way or another and there is happiness out there for you, I just know it. There are lots of us who want to support you through this so if there is anything we can do to help please don’t hesitate to ask. With care…

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  10. After reading today’s post and gasping for breath, I read back to here to see how I’d missed this unfathomable news.

    Words are completely inadequate so all that I can offer is my comforting thoughts and deepest condolences.

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  11. Pingback: The Lottery | The Empress and the Fool

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