29. Chapter Twenty-Nine
Chapter Twenty-Nine
Jane
O n the second of May I received an email from the genetics lab confirming that I was the parent who passed on vascular Ehlers-Danlos syndrome to my daughter. I stared at my computer screen, my mouth dry, my heart in my throat.
True, I had assumed I was the guilty party, but reading the words “ Result: Positive ” took all the guilt roiling in my gut and strangled me with it.
I never should have married Meg’s father.
And having made such an egregious error, I should have realized my choice of spouse had been a gross lapse in judgment years before I actually got pregnant.
I should have realized something was extremely wrong with me. I’d had enough signs—the bleeding incident on the plane, the easy bruising, the thin hair, the narrow bridge of nose, the tiny earlobes, translucent skin through which I could see my entire vascular structure, sinew and bone, wounds that took weeks, sometimes months to heal—these were all signs of vEDS that were overlooked by every medical practitioner I’d ever seen prior to visiting the Moya Clinic.
After my second miscarriage, I’d had some blood tests and subsequently was told I might develop a disease of the connective tissue. The insane thing was, I’d already developed a connective tissue disease. I had been born with it.
Thirty-odd years ago, after a stillbirth, they’d tested my chromosomes, but those results had revealed nothing abnormal.
Why didn’t someone suspect vEDS? I read somewhere in all the literature that it had been a known disease since the 1930s.
Why?
Because I didn’t have issues with hypermobility as with cases in Classic EDS ?
Because vEDS is rare? Because a mere one in fifty thousand people are affected? Because there are too many rare diseases out there for doctors to ever be expected to know about them all?
It was just not fair to bring Meg into this disaster—for her to find out that not only her life was in danger, but my grandson’s life was hanging in the balance as well.
No, I wouldn’t give back Meg’s childhood for a million bucks. My every breathing moment has been enriched by having my daughter in it. She is smart and vibrant, and over the years she has opened my eyes to so many of my flaws, making me work harder to be a better person, a better mom.
And how have I rewarded her for being an exemplary daughter? Guilt is an illogical emotion. I know I had no power to prevent Meg from inheriting the gene mutation, but I still felt responsible.
By God, she got this from me and I am going to do everything in my power to support her.
At least she didn’t have FMD. The genetics counselor I spoke to on the phone told me they had not found a gene connected to FMD, and though I definitely had both vascular diseases, it was clear that my daughter did not.
It was raining outside, so I grabbed my umbrella, a light jacket, and walked to the library.
I found Meg in the beautiful children’s section that she had designed and painted. She took one look at my face and led me to her tiny office where there was barely enough room for the both of us to sit, our knees touching.
I was grateful for the privacy.
I showed her my genetics report and she read it with a face of stone, not revealing an iota of emotion, which was very unlike her. On the opposite end of the spectrum, my heart was shredding. Every inch of my body felt weighed down and ached as if I were eighty-five years of age.
“I told Dr. Sandy about your ruptured uterus.” Meg handed the report back to me, a long sigh slipping through her lips. “She’s already decided to have a team of people on hand during the cesarean to sew me up.”
I clasped her hands and squeezed. “At least they have forewarning. That’s a very good thing.”
Her resolve cracked as tears dribbled from her eyes. “W-what if I die?” she asked, her voice haunted.
“Oh, Baby.” I pulled her into my arms and held her tight, rocking slowly. “You are not going to die. You and your son are both going to live. ”
Meg’s inhalation stuttered. “What about your miscarriage, your stillbirth? That could happen to me.”
My heart twisted as a statue of Gandalf wielding his wand caught my eye. If only I could wave a stick through the air and change reality. “I never talk about it, but the stillborn babe had Down syndrome so I don’t think you need to worry about that.” I rubbed my hand around her back. “I know you’ll take super good care of yourself, and that is the most important thing you can do for your baby. Focus on what you can control. That will keep you sane.”
“B-but they already have me on three blood pressure medications. They’re telling me I might spend the whole third trimester in the hospital. That I might develop pre-eclampsia.”
I needed to face the cold truth that a critical difference between Meg’s pregnancy and mine was her hypertension. She might be receiving the best medical care in the world, but her life was still in danger. “Well then, you’re going to do whatever they say.” As her mother, my job was to help my daughter through this in any way I could. “A trimester in bed will be worth every second once you hold your son in your arms.”
“I—I’m so scaaaaared!”
I choked back my tears, steeling myself—at least enough to keep my voice steady. “Of course you’re scared. I’m scared, too. But you are one of the strongest women I know. You survived eleven years of straight winters going back and forth between the US and Australia. You have what it takes to pull yourself through any adversity.” I held her at arm’s length and gazed into those red-rimmed, tear-filled eyes. “You have been blessed with a miracle, and you will hold your baby. You will be an amazing mother and will be there to watch as your son grows into a man. I know you will.”
Bob’s yard was picture perfect, though it was not quite as gorgeous as mine. He’d filled my flowerbeds with splashes of vibrant colors—in a varied assortment of flowers that would bloom all summer long. After the snow melted, the grass grew in green and healthy, and my lilacs filled the house with fragrance .
When I showed up on Bob’s doorstep for dinner that evening, I thought I’d painted on a pretty solid poker face. But as soon as he opened the door, he asked me what was wrong.
“We need to talk,” I said as he ushered me inside his quaint brick cottage located just below Grandad’s Bluff.
“Okay…of course.” He led me to a worn loveseat in a cozy living room with a big brick fireplace and a good-sized television in the corner. “Can I get you something? A glass of wine? Water?”
I shook my head, my gaze captured by a wall festooned with pictures of his daughter. “Maybe with dinner?”
“What’s happened? Is it Meg?”
I tugged him down beside me. He needed to know the truth about everything. Sure, he knew a little, like Meg was having issues with her pregnancy which I’d mostly attributed to hypertension. “I’ve been keeping something from you.”
He grinned. “You’re married?”
“I wish it were that simple.”
Bob’s face fell. “Seriously? It’s bad? Are you dying?”
Who knew that question would hit such a chord? After all, I was already nine years past the average vEDS life expectancy. “We’re all dying.” I pulled the genetics report out of my purse and handed it to him. “I received this today.”
He read the first page and stroked his beard. Actually, it wasn’t until page three where it got really interesting and talked about ruptures and dissections. But I didn’t wait for him to wade through all the medical jargon even though he had been a pharmacist.
Instead, I slipped it from his fingers and told him about my cesarean disaster, then fast forwarded to our dissection events and the fact that I was diagnosed with fibromuscular dysplasia because my arteries were twisted and torturous with a beaded appearance. “Meg doesn’t have FMD and so the doctor at Moya in Rochester sent her for genetic testing.”
He tapped my report. “And they found this mutation?”
I nodded. “Vascular Ehlers-Danlos syndrome.” I opened the report to page three and pointing out that Meg and I can have arterial ruptures at any time, that I had four aneurysms that they’re currently watching, and because of Meg’s pregnancy, she was in danger of having a ruptured uterus.
Bob ran a hand over his head, the corners of his mouth tight. “God, Jane, this is awful.”
“I should have told you earlier.”
“Why didn’t you? I’m a healthcare professional.”
“I know, but—”
“What?”
“I didn’t want to burden you.”
“You’re never a burden to me, Sweetheart.” Bob pulled me into his arms and kissed my forehead. “You do know that you’re the best and brightest thing that’s happened to this old guy in decades?”
“Really?” I asked, sounding a little juvenile. But I didn’t care. “I’m so afraid of losing you. You’re my best friend and I haven’t had a solid friendship in years.”
“You can stop worrying. I knew you were an amazing catch the first day you opened your door, then my mind was made up when you smiled at me with pink paint on your face.”
I snorted out a laugh. “Even though I’m damaged beyond repair?”
“Who says?”
I took the genetics report and folded it. “These assholes, that’s who. If you read the data on vEDS, I should have died years ago.”
“But you didn’t, did you?”
I shook my head.
“That’s because you take fantastic care of yourself. Because you’re as ornery as a tomcat, and you have the intestinal fortitude of a dragon.”
I laughed. “I think Meg’s the dragon. She has shown more strength through all this than I ever dreamed she had in her.”
“Well, there’s no doubt you’ve been an excellent role model.”
I wish I hadn’t been so hell-bent on climbing the corporate ladder. What kind of role model was I, always working? Even when I took Meg to her lessons, I was usually on my phone or on my computer analyzing numbers. “I don’t know. I’m just glad she moved in with Mike. At least if she has something happen in the middle of the night, he’ll be there to help her.”
“He’s a good man.”
“So much better than the yahoo she met on her cruise to Bermuda.”
A buzzer sounded in the kitchen. Bob kissed my cheek. “The roast is ready. Are you hungry?”
“Absolutely.”
“Good.” He stood, but before he shifted his attention to the oven, he crossed his arms and gave me a pointed look. “In the future, I don’t want you to keep this kind of stuff from me, okay? It’s too important. ”
I nodded. “Okay. Sorry. I’m not used to having a partner, I guess.”
“We’re a team, aren’t we?”
“Yes.” I followed him into the kitchen and nabbed a piece of lettuce out of the salad bowl. “Thank you.”
“For what?”
“For being understanding. For not kicking me out.”
Bob used two big forks to move the roast to a cutting board. “Why would I do that?”
“Because my arteries are twisted and I have four aneurysms? Because I passed on bad genes to my daughter? Because she’s facing a high-risk pregnancy?”
He brandished a carving knife. “All families have problems, but that’s not why I haven’t asked you to leave.”
“Why then?” I slipped the knife from his fingertips and started slicing the juicy roast to avoid staring into those penetrating eyes. “Why when things are so bleak on my side of the street?”
“Because I’m in love with you.”