Bravery

Sometimes I need to be reminded that I’ve done some hard things. I have survived. I am brave. I am brave because….

I hung up the phone, the news of a Down Syndrome diagnosis for my baby still ringing fresh in my ears. I took a deep breath, basked in a moment of acceptance and relief, and then continued on my day, keeping my personal life and professional life separate. I continued seeing my patients that day, all pregnant with healthy babies, all while holding my news secret.

I said yes.  Yes to a baby with special needs.

I walked into the CT Down Syndrome Congress annual conference, scared but trying to keep an open mind to learn all I could about what life is like parenting a child with Down Syndrome.

I left the hospital with a likely life limiting diagnosis for my baby, choosing minimal fetal monitoring until the baby had any hope of survival, knowing that I was choosing to preserve my fertility over heroic measures for a baby that would likely die, knowing that I might forever struggle with guilt if she was stillborn before the set date we were willing to intervene.

I told the doctors to take out the vent and held my baby as she died.

I held my lifeless baby.

I handed my baby to the nurse, never to hold her again.

I left the hospital empty handed.

I continued to live life.

I went to my first support group, though I cried tears of fear in the hallway before going in.

I went back to work and told hundreds of people, “my baby died,” and continued to care for them with a smile.

I chose a new career path.

I talk about my baby to strangers, to try to break the silence.

I try to ask for what I need.

I had had another baby despite crippling anxiety that I might lose him too.

I’ve been to baby showers.

I’ve held babies.

I write about my feelings here, for all to see.

Why are you brave?

The High Chair

I’ve always been a fan of yard sales. Apparently what you call them hints at where you were raised- yard sale, tag sales, garage sale. I have memories of going with my dad to yard sales- once excitedly finding a Mr. Potato Head! We would hit up the annual town fundraiser, sometimes filling up a garbage bag and paying by the pound. Out of college, I hit up craigslist and estate sales to help furnish our first apartment. The habit continued into grad school and even when I was making a decent salary in my first job, I still was drawn to the yard sales. I often would pick up furniture left out for free on the side of the road, so I am no stranger to other people’s discardings.

After we had our big ultrasounds- the anatomy scan and the heart ultrasound- the ones that told us Mabel didn’t have any of the typical birth defects tht often come with Down Syndrome, I finally felt comfortable enough to start buying some baby supplies. Chris tacked down some secondhand cloth diapers on Craigslist and we nabbed a bunch of those. We drove an hour to buy the carseat we wanted from another ad on Craigslist. We made a trip to try out rockers at Babies-R-Us. We started a registry on Amazon. But when Chris came home one day with a high chair he picked up off the side of the road in our well-to-do town, I couldn’t find my usual warmth for this secondhand find.

Chris was confused. “We’ll bleach it,” he said, knowing my affinity for the cleaning product might sway me. I had already narrowed down the high chair I wanted, looking at reviews and prices. I think in my head I wanted to pick out the high chair special, not get whatever we could find. I agreed to hang on to it, figuring I’d eventually sway him into getting a new one. Until we deep cleaned it, it sat in the basement.

A few weeks later we were given the news that we might not need that high chair. The low fluid diagnosis at 27 weeks did not bode well for our baby and so we absorbed the words of the doctors when they said she might die.  Her kidneys weren’t working and the resulting low fluid would make her lungs small- perhaps too small to support her.  We stopped buying baby supplies. I cancelled my baby shower. We hid our registry. The high chair got moved to the basement.

A few months later, Chris packed up all the baby stuff and hid they in the attic, so I wouldn’t see the painful reminders of my dead baby. The high chair, though, stayed in the basement, tucked deep into the utility room so I wouldn’t cross its path when I did laundry.

Chris and I had a day off this week and ended up using it to simply do housework we had been avoiding. One task we crossed off the list was bringing the big pile of clothes and housewares to Goodwill. I threw the highchair into the car. I wasn’t fond of it before, but now I resented it, a symbol of what I did not get to have. Chris relented and we schlepped everything off to Goodwill. After unloading the bags and boxes, the highchair was the last item he brought to the storefront. He returned to the car with it in hand.

“They don’t take baby stuff.”

So we still have the highchair. I know of a few places that will likely take it, but they will take some extra coordination and trips.   We might just find a dumpster and ditch it, which we both hate the idea of because it’s in fine shape and there are people who would gladly take it.

I now hate that high chair. It’s haunting me.

What haunts you?

I forgot.

A few months ago, in my early days of grief, I walked around with a constant sadness, like a bag full of sorrow slung over my shoulder.  I could shift it from one side to another but it was always there.  As the days progressed, my grief did too.  The moment to moment sadness got lighter; I could function better.  Now instead of the constant heavy weight on my shoulders, I get smacked in the face with that sack full of sorrow.  When it was constant, there was almost a comfort in it- like an old friend.  But now when it hits, it hurts so bad I have trouble recovering.

Yesterday I was smacked hard.  I got my period- I realize this might be TMI, forgive me- and regardless of whether I’m trying to conceive or not (I don’t think I’ll be advertising that decision here anyways), most women don’t celebrate day 1 unless you’re happy to not be pregnant.  As I return to some new normal of a monthly schedule, it’ll be a reminder that I‘m no longer pregnant, I’m no longer recovering, I’m not breastfeeding and I no longer have Mabel.

Later that day I opened the mail and found two cards in nice envelopes hand addressed to me.  I’m still getting an occasional condolence card, which means the world to me.  I opened one from a long ago friend, and was cheered.  I opened the other and it was an invitation to a baby shower.  It was accompanied by a note from the expecting, recognizing how this could be a stab. No matter how the invite was dressed, it would still sting.  I wasn’t fortunate enough to have pregnancy that warranted a baby shower.  I wasn’t even fortunate enough to have a pregnancy that produced a take home baby.  Another reminder that I no longer have Mabel.

As these reminders hit, I began to cry.  The cry grew into sobs and then a guttural howl.  I had this tightness in my chest that I needed to release.  At one point, through my tears and in between moans, I said to Chris, mournfully- “it’s still there!” Despite all my screaming I couldn’t get it out.  It was a hurt that pounded in my chest, trying to eat its way out.  It was a gnawing, scratching, pulling at my core, that no amount of howling would release.

In the midst of my meltdown, I had a sudden realization.  Despite these reminders that I no longer have Mabel, I had forgotten it was Saturday- Mabel’s day- the day I visit Mabel.  I was so overwhelmed with my emotions that I forgot.  I hate to even write those words.  I forgot.  I didn’t include her in the schedule of errands to run for the day.  I howled at this realization because I felt like a bad mother.  I forgot.  I have one thing to do to parent my daughter and that’s to visit her.  I like visiting her.  Sometimes I go and just sit with her.  I had gone by myself just two days before to celebrate her three-month birthday.  But on this regular day, I forgot.

The day was eventually salvaged.  I was so distraught that I wanted to cancel all my plans for the rest of the day- but I knew that would add to my sadness.  So we went to Mabel’s grave and I apologized to her.  I spent time with some friends, who gave me good distraction.  But the pain still lingers today.  I now know what it’s like to get my first monthly reminder.  I now know what it feels like to get my first baby shower invite.  There will be many more of these triggers to come and I have to find a way to cope.

Who needs a baby shower?

This past weekend was supposed to be my baby shower.  It was going to be a really cool baby shower- a bit non-traditional.  It would be an evening shower at a local vintage clothing shop, with dress up games.  Unique.  Fun.  Totally me.

 

When we were first diagnosed with ologohydramnios, I had Chris put away all the baby stuff (what a sweet man).  I told my sister and my cousin not to send out invites for the shower.  Then two weeks later, after one ultrasound where the doctor said the lungs “didn’t look hypoplastic,” I started feeling a little more optimistic.  There was a moment or two that I thought maybe I could still have a shower?  Maybe?

 

After all our research and plan-making, it became clear to me that I didn’t think a baby shower was a good idea.  I can’t even look at baby stuff right now without a pit in my stomach.  I am so sad I’m not having a baby shower.  A shower makes my pregnancy real and a time for celebration.  Not having one makes me feel like my pregnancy is not valid or nonexistent even. It hurts.  Its my choice not to have one, but I hope people also recognize that I’m still pregnant and this baby is real.

 

My sister, who lives in California, was flying in anyways for a combo work-week in NYC and what was to be my baby shower this weekend.  Though no baby shower was on the agenda, she came up for the weekend anyways.  And she and my cousin reclaimed the day and took me to the spa instead.  If I couldn’t have a baby shower, the spa was truly the next best thing.

 

I felt truly spoiled- four treatments (pedicure, massage, facial, makeup) and lunch.  We spent the day sitting around in our bathrobes.  I seemed like I was busting out of my bathrobe, while my sister sat comfortably in hers.  I figured I am just more pregnant than she is (she’s due two months after me).  After my massage therapist tracked down a larger robe for me and we reassembled, we discovered that I had been in a regular bathrobe and my sister was in a 4XL.  Hah!

 

This is a very gracious thank you to the both of them.  My sister, pregnant herself, has been super supportive.  She calls when she knows I have ultrasounds.  She’s heard me cry over my fears- including ones from the beginning that seem small now.  She was very sensitive when telling me she was pregnant.  She told me in a way that allowed me to be happy for her and recognize that our experiences would be different. And that it might be hard for me at times because she is growing a healthy baby (thank goodness) and I am not.  I can not express how appreciative I was of simply how she told me.

 

My cousin, too, has been a big source of support.  From the beginning she has been unafraid to talk about whatever is happening with my pregnancy.  Some people hear Down Syndrome and don’t quite know what to say.  With the new diagnoses of oligohydramnios, kidney problems and potential lung problems, people are at a loss of how to respond.  Many try to give words of encouragement, which are so very well intentioned but often fall flat.  My cousin asks questions- which is helpful.  I usually just want to talk about things, to explain how hard this all is.  And she can take a step back when I’m sick of talking.  She has also been my backup ultrasound buddy.  My husband works an hour away from our ultrasounds, so coming to them all often entails taking a half day off of work.  We try to work around his schedule but with weekly ultrasounds in addition to meetings with specialists, sometimes it’s just not doable.  And I refuse to go to ultrasounds alone- just in case I get more bad news.  That’s where my cousin comes in.  She came for a follow-up ultrasound for the clubbed feet.  She was there at the ultrasound when the oligohydramnios was first discovered and came with me to the hospital while my husband drove to meet us.  She came with me last week and listened to me cry on the sidewalk afterwards.   She also lets me shower at her house after bootcamp in the morning (its my latest exercise/anxiety release. And I wouldn’t be able to do it if she didn’t live so close and let me mooch her hot water). Plus she brings me ice cream (the good kind) whenever there is a new complication (did I mention how much I like ice cream?)

 

So ladies, thank you.