Surviving Till Sunday

I was diagnosed with placenta percreta at 22 weeks gestation during the pregnancy of my third child, Banks. It is a rare diagnosis, affecting as few as 1 in 550 pregnancies. Essentially, the placenta attached too deeply into my uterine
wall and penetrated through to my bladder causing a potentially life threatening situation at delivery. I also developed complete placenta previa as well as gestational diabetes, complicating matters even further. In addition, Banks was diagnosed with a VSD, duodenal atresia, and several other
soft markers for Down Syndrome. Because of the complications I faced, an amniocentesis was out of the question so his official diagnosis had to wait until delivery. I was hospitalized at 28 weeks, delivered at 29 weeks and was placed in ICU on a ventilator. I lost 26 units of blood the night of my delivery
and earned myself the title of “the girl who lived” among my medical teams.

Though I was only 27 at the time, the surgery required a hysterectomy to stop the hemorrhaging, the most common course of action in cases such as mine, and I have a scar that ranges from just below my chest to my pubic bone.

Banks was transferred to another hospital to have surgery and begin care in the NICU while I recovered. I didn’t meet him until a week after he was born. After a long year of recovery, on the eve of his first birthday, I penned the following words:

So….what now?

It’s an odd question to ask yourself on the eve of your child’s first birthday, huh? Yet, I find myself sitting here typing on a blog I rarely post on, posing the question as if someone will offer direction.

It’s not the first time I’ve asked this very question, since delivering Banks one year ago on January 15th. In fact, I think I’ve asked it several times, most often in therapy. The wonderfully aggravating thing about therapy is most questions such as the one above are met with more questions. I’m happy that we’re here. Please don’t mistake my questioning as ungratefulness because nothing could be farther from the truth.

It is not now, nor will ever be, lost on me that it is a privilege to breathe in and out. And when I begin to feel ungrateful, a gentle brush of a hand across my midriff reminds me just how lucky I am. It’s just, well, milestones-especially this
milestone in particular-is a difficult one to navigate.

On one hand, we are celebrating. My 3lb miracle baby boy is a happy, thriving child absolutely bursting at the seams with life. He’s made leaps we didn’t know were possible and overcome every single obstacle in his way. His smile will melt your heart and his eyes are so full of hope. He can’t be stopped. And
praise God for that. He is curious and funny and tender and oh so dramatic. He’s the most perfect “last baby” I could ever dream of. He completes our family and has our whole hearts.

A year ago, he made his way into the world. And we were afraid. Because of the complications I faced, Banks was born under the effects of anesthesia, so I am assuming, no tiny cry pierced the air that night. His cord blood was banked, he was placed on a ventilator, and whisked to the NICU to begin care. With an overwhelming number of soft markers for Down Syndrome, we prepared ourselves to raise a special needs child the best way we knew how and had to wait several days for the results. There was no skin to skin contact between us.

No placing him on my chest. No crying. No labor. No…anything. I wouldn’t meet him for a week later. His birth, in some sense, was simply one portion of a very large surgery. But at the same time, it was a miraculous event all on its own.

Banks spent 59 days in the NICU following his birth. The VSD he was diagnosed with before birth closed on its own. He was transferred to another hospital and had Duodenal Atresia surgery in the days following his delivery.

Though we still deal with reflux, his digestive system has healed well. He faced a variety of hurdles in the NICU as a 29 week preemie, but overall, did really well. His cord blood results indicated no Down syndrome, nor any other chromosomal manipulation. He had a second surgery in December that was urological in nature and has since healed really well. He’s overcome all of the odds and is currently doing his best to take his first steps.

The journey from where he started to where he is now has not been easy. There have been LONG days (and nights), but also, it feels like a whirlwind. However, though we are celebrating his birthday, and his incredible life, January 15th is also a mourning for me in a sense. It’s the day of my surgery. The day everything changed for me.

When Banks was born, there was also a death of some sorts. Granted, that figurative death was almost a literal death and I do not take that lightly. I am GRATEFUL to be here. I did remarkably well in my healing and I have too beat all of the odds in my way. But… I’m not the same. And that hurts still.

With Banks’ birth came the elimination of my ability to have any more children. Granted, we were done having children. But still. My choices at the time were a hysterectomy or death, so it’s not like the options were abundant. And I guess, there’s a resentment that at 27 years old that was my reality.

And perhaps that’s the thing that still bothers me the most, that even a year later, it’s hard to process that this is still my reality. Maybe there’s part of me that wants to believe that the surgical end of things was all a bad dream. That my birth was normal. And my body is the same. And that all of the people I
met and things that I faced were nothing more than a bump on the head that landed me in Oz and at any moment, I can click my ruby red heels and go home. And yet, I wake up in my bed and run my hand down the ridges of my incision and know that I am home. And that it wasn’t a dream. And that, moving
forward rigid and weak, is the only way to go. Because what was, isn’t coming back. And this is reality.

Which brings me back to my original question: What now? So what do I do with a story so special? What do I do with a body like this? How do I live suspended between great joy and great loss in a world that- despite my desperate plea doesn’t stop spinning?

And honestly, I don’t have an answer. I would like to tell you I had a plan. Or a book deal. Or something spectacular. But I don’t. At the very end of December I sat across from a new primary care physician and asked her what I was supposed to do now, and do you know what she told me? Nothing. She told
me that I’m still healing. I didn’t like that answer. I told her so. She smiled through her mask and also told me this: “You have a brand new body now and it’s shattered who you were before. And I know you feel weak, but now, we get to start rebuilding”.

I don’t know what that looks like. But it is hopeful, isn’t it? When I suffered a miscarriage several years ago, the one that lead me to start a blog in the first place, I clung to a particular verse that also seems to apply here: 1 Thessalonians 4:13. It’s the one that says “we grieve with hope”. And perhaps
the fact we can do that, is reason in itself to celebrate. Today (though I am writing this the night before) will be weird for me. There are parts of it, especially this year, that will be hard to process. But it’s also Banks’ birthday. And he is the most joyful boy to celebrate. So today, I’ll grieve. And I’ll
celebrate. And somehow, both will coexist. Because that is the reality of living. And the truest illustration of hope.
XO, B.

Angel Kane - Kane & Crowell Family Law Center

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