#chdwarrior

Inksolation #1- Isolation

does having half a heart

make me half a human?

can i love like you?

can i live like you?

can i make music or keep time?

or does it make me a moster

half of what i should be

you ask

“what happened to the other half”

i answer

“i do not know”

because my worth is baised on a peice of me thats missing

that i lost long ago

or that i never had

but how can i miss someone ive never had

how

how do i love

how do i live

how do i make music or keep time

when you keep asking

what happened

if im human

if i love

if i live

or if im a moster

or a cyborg

or a cripple

and i respond with

“im a lightning rod”

eye of the storm in the heart i am missing

i am missing

a part of me is missing

a part of me was never here to begin with

In early October, just a few days after my husband Ryan’s birthday- we were given news that the genetic testing we had been going through for our 2nd baby was indeed abnormal, as we had feared and certain early markers had indicated. It was most likely Down Syndrome. I cried in the car to my Mom as my husband ran into the pizza shop next to the hospital to get me lunch on the way to my first day of working at my new job. It was raining. After a miscarriage last year that left us both reeling, we had struggled to connect to this pregnancy. To allow ourselves to get excited. We were hoping so much for relief and instead it felt like we were playing this game of poker that had gone all wrong and we couldn’t fold or leave and had no idea what terrible cards would be drawn next. The deck seemed stacked against us. 

After some confusing and contradicting information from the genetic counselor and doctors and perinatologists- we decided to get an amniocentesis because it was the only thing that could actually give us a solid answer when it seemed like we were drowning in all the maybes of statistics that so often don’t end up meaning anything at all when you’re in that random 1%. I also figured out that while the amnio did carry with it a small chance  of miscarriage, my chance of having a miscarriage anyway was actually higher. It’s funny the information they choose to tell women. We scheduled the amnio and did our best to think positively- something that at the time felt insulting. Sometimes still does. 

We had been planning a trip to Disneyland for months for our daughter Rosy’s 4th birthday. We had no choice but to have the amnio just 2 days before we left. We promised ourselves we’d get lost in celebrating her, lucky to be in a place where they do all they can to shove the joy right down your throat. The morning of the appointment, I was nervous, numb. I mostly dreaded going back to that awful, poorly lit clinic where it seemed like nothing but bad things happened. They sat us down with Jenny the genetic counselor (with whom Ryan and I had both had multiple confusing, sometimes contradicting conversations and had concluded privately that most likely, was a moron.) As I sat at the little round table in her office and she rifled through pamphlets like she wasn’t selling us the disparate possibilities of a grim future, but instead was selling us insurance or some moderately used car, I noticed the framed certificates from Portland Community College certifying her as a genetic counselor. What a terrible job to have.

She told us they would do a detailed anatomy scan before conducting the amnio. They were looking for other indicators of a chromosomal abnormality. The Nuchal Measurement was already high and the blood work came back borderline, or possibly negative? It depended on who you caught on the phone to ask. It was enough to warrant concern and this new found ill-fated relationship with Jenny the genetic counselor. The biggest thing they were going to look at was the heart. Trisomy 21 (Down Syndrome) comes with a Congenital Heart Defect more than 50% of the time. 

I was back on my back in that dark ultrasound room. Before the doctor came in I was cracking jokes with the technician, who seemed friendly. She told us it was a girl. We had been convinced it was a boy because I had been so sick, so much sicker than with our first. Ryan made a joke about being relieved because “boys just set shit on fire.” Once the doctor came in the technician and doctor began mumbling to each other quietly, deliberately so we couldn’t quite understand them. Then the doctor left for awhile and the technician wasn’t as friendly anymore. When she came back she told us it looked like there was something wrong with the heart. She couldn’t diagnose it- but thought that with everything else it was a very strong indication that the baby indeed had Down Syndrome. She highly recommended we get the FISH test- which would get us results on DS specifically within a few days. I held in soft hiccupy sobs and she stuck the 10 inch needle in my belly. Ryan watched the baby grab for it on the ultrasound as I kept my hands over my eyes. 

So we went to Disneyland determined to show our Rosy, our sunshine girl- this human representation of our experiment gone “right”- the best time of her life. Not to let this dark sadness and confusion cut through her well deserved, whimsical joy. The universe could sucker punch me, but so help me  I would protect my already living baby from this sorrow. A baby with Down Syndrome, guaranteed to have major heart problems, and likely other major health complications. We were at a loss, but as the days went by, we were drifting closer to the conclusion that maybe we weren’t cut out for that. Would I want to live that way? I wasn’t sure. But one DS diagnosis increases another. We had just recovered from a near second term miscarriage last year and it all just seemed...wrong. “Is there any chance we will have a.... healthy baby?” I asked her.

“No.” She said.

Rosy had disappeared into Goofy’s house in Toontown when 3 days later my phone rang. It was an Oregon number. We decided not to get any news until after we got back to Portland. I picked up anyway. There are few things worse than my imagination set wildly free in the dark unknown, at Disneyland. I felt so self conscious of my burgeoning belly. I wanted to just take it off and hide in a dark hole. “Well it’s not Down Syndrome” she said. My heart sank. “I know. We thought for sure it was too, but it’s not. We think you should move forward with scheduling an appointment with a cardiologist. There are 63 other chromosomal abnormalities we are testing for and should know about those by the time you come in for the Echo.” What? Wait. What?? What did we do with that information? “Is this... good news?” I asked. 

“I don’t know. I mean what’s good news?” 

10 days slowly passed and we were finally back at the dreaded poorly lit clinic where nothing good ever happens. Except we found out all of her chromosome tests came back normal. Was that good? I had lost my sense of expectation, direction or grounding. I guess it wasn’t bad? All it was was not what we thought it would be. Again. 

The cardiologist eventually gave her the diagnosis of Double Inlet Left Ventricle. Click on that link if you want the dirty details but it basically means that she has 3 chambers in her heart instead of 4. She will require major, multiple reconstructive surgeries after she is born. 

 I am 29 weeks now. We have pretty much decided on naming her Iris. She is OK as long as she’s in my womb- but shortly after birth will require her first of 3 open heart surgeries at 5 days old. The second occurring between 3-6 months, the third between 3 and 6 years. After many conversations with our parents we decided to go home to Salt Lake City, UT to deliver her so she can have her first surgery, the Norwood,  at Primary Children’s Memorial Hospital- a highly nationally ranking children’s hospital where 3 sets of our parents also happen to live. 

They call babies with congenital heart defects, “heart warriors.” A term I’m trying to embrace. On days when I feel sad, when the worst case scenarios are painted in comic jewel tones dark and clear, or the haunting stupid statistics and the paranoid and unhelpful anecdotes that swing both ways creep into the heaviness in my chest, when people tell me how “strong I am” and I still don’t know what that means- I think about her genes. About the women that came before me; the babies they lost, the ones that survived, the husbands involved and not so involved, the dismal medical technology of yore, and I am grateful our Iris is coming to us, today and not last year or 30 years ago, or 50, that she has her woke-ass, non-toxically masculine Dad who cries with me, with us, and hopes with us, who put up her crib with his strong, gentle hands, like some physical way of taunting the universe, showing it that we aren’t scared, when we are. I think about the fact that she has the blood of Oakies and Mormon Pioneers, Sailors and Ranchers; of these people who had to survive their own journeys across different kinds of mountains and seas. I feel her flopping and kicking around in there and sometimes I think maybe she really is a warrior and maybe everything will be OK. 

I know I have like 7 followers that are actually people but I need somewhere to share this.

For the last ten months, my little brother has been in the hospital waiting for a new heart. When he was born, he had a CHD (congenital heart defect) called Hypoplastic Left Heart Syndrome, HLHS, where in utereo, the heart is malformed: half of his heart just wasn't there. He had three open heart surgeries before the age of five.

Last September, he'd been kind of wimpy. Always tired, but would feel better after a nap. This continued, worsening, until eventually, in January 2017, my mom took him into the hospital where she was told he was in late stage heart failure. He was taken to the children's hospital. We got him on medication to keep him alive and he was listed for a heart transplant shortly after he arrived.

Yesterday, my mom got the call. We had a donor heart. We have been waiting ten months. Ten months, even for me, is an eternity. I can't even begin to imagine how it would be to be almost ten and stuck in the same room for ten months. My mom stayed with him the entire time.

Right now, he's in surgery. Mom didn't want anyone to be there except her mother, so I'm still at home. I cannot stop crying. But this is such a good day. For me, it's the first time in ten months that I've had hope. There's a something out there standing behind my family giving them strength. I don't know or particularly care what specifically it is. I'm just so grateful for it.