Radio Silence

Well, the day came and went. It’s now 369. In a way no different from day 365 and yet in a way very different. The day was symbolic, of course, and to borrow a term from my pilot brother, I have been radio silent since as I recovered from and sorted through my emotions.

I spent the day doing not too much- sat on the couch, took Muppet to the dog park and did some light cleaning. I took out Mabel’s box- or boxes, the bereavement box we got sent home from the hospital with, the box of pregnancy related things I had kept, the box of cards and what nots I had saved. I got a little teary eyed looking at her outfit- the pair of pants she didn’t even wear because she was too small. They had pockets.  FullSizeRender_2

Her hat still had strands of blond hair in it- which made me smile because the lock they cut for keepsake looks brown. I opened up the tiny blood pressure cuff and held it to my face- I swear I could just catch the scent of her.

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I packed it all back up and organized it the way I want, keeping her bereavement box in our bedroom and putting some of the other stuff away in a closet.

We visited her grave and brought a balloon- Chris unknowingly bought a Hello Kitty one, but we figured she’d like it.  By the time we got to the cemetery, one of the letters fell off and so it read “Happy Birthday abel.”

The evening we had a few friends over- which turned into a few more- and had dinner and cake.

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Singing Happy Birthday to my dead daughter actually didn’t feel so good, but it seemed like the logical thing to do. We watched her video and my friends got teary eyed, while mine remained dry. I realized I don’t like to cry real tears in front of people. I was reminded of how in the immediate days after her death, with family filling the house, I would sneak up to my room to cry unwitnessed.

My tears came the night before, triggered into a meltdown when one of my midwives messaged me about how on the eve of her kids’ birthdays she often thinks about what she had been doing way back when, and how hard it must be for me to do that. The message was sweet and needed, opening up the flood gates. I didn’t have a good cry again until I crawled into bed on Sunday, crying about some of the disappointments from the day- the people I didn’t hear from. Crying about how my life and relationships had changed so much in ways that I felt I so sad about. Crying about how my daughter was dead-how I have a dead child.

I’ve spent the next few days sorting through it all- trying to focus on all the kindnesses, the so many kindnesses that came with the day and not be consumed by the sadness of disappointments (some of which I’ve since decided were justified, some of which were not).

So in that vein, I want to share with you all some of the many Random Acts of Kindness. There are too many to even list, many I don’t even know about and not enough words to thank those who have done them.

  • Donations to children’s museums- in CT, in RI
  • Cupcakes to my care team- the practice I work for, the midwives who cared for me, the MFM docs who cared for me, Labor and Birth, the NICU
  • "we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes."

    “we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes.”

  • Flowers at Mabel’s grave
  • play dough too!

    play dough too!

  • Carrot soup
  • Books that showed up as gifts (including the one on the right that came from unknown sender)
  • did any of you send the Help Thanks Wow book?  it came without a sender...

    did any of you send the Help Thanks Wow book? it came without a sender…

  • Gifts for children’s hospital in Boston and Indianapolis
  • Shoveling neighbors snow in Massachusetts and Connecticut
  • cards! so many cards!
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  • Donation to help migrant workers and their families in Florida
  • Diapers and kids treats donated to a homeless family in North Carolina
  • Donation to a Down Syndrome organization in Virginia
  • A children’s book donated to my town’s library
  • Letting people go ahead in the airport line
  • Buying ice cream for the kids at the next table
  • Dinner buying for a cancer survivor
  • Baking carrot cake for a friend
  • Coffee bought for people in line behind the buyers
  • A big tip left for waitress, a big tip left for a bartender who is fostering a baby with Down Syndrome born addicted to heroin
  • A donation given to a homeless man in a wheelchair
  • A donation to the Perinatal Mental Health task force in LA
  • Water bottles given out to strangers in LA on a very hot day (hard to conceive in chilly new England)
  • A carrot hat given to me
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  • Presents donated to a local shelter including a carrot stuffy
  • Donation to a high school lunar rover team in CT
  • Handmade carrot wreath for my door
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  • Letters from Thai high school students
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Good role modeling

The three-story house loomed above me, waiting to swallow me up whole. A wide wooden staircase led to the front door like a path to its mouth. The house was one typical of the Outerbanks, an oversized and luxurious rental occupied on a weekly basis by large families or groups of friends. After nine hours in the car, my legs celebrated the freedom to go up those stairs but my heart was heavy. I had arrived at the family reunion that had been in the works since I was pregnant. It was a trip planned when we thought Mabel would live, when we thought Down Syndrome was her biggest hurdle. Now I was here without my baby, starting the shadow of the vacation that was supposed to be. I didn’t know how it would be interacting with many relatives there who I had not seen since Mabel died. Would they acknowledge her? Would they say something well intentioned but secretly painful? I was especially nervous because there was going to be a two month old in the house and my mind had already imagined many painful scenarios- everyone sitting around passing the baby with oohs and ahhs, no one recognizing the other new family member who couldn’t be there, people giving me a hard time because I’m not as engaging as I once was. Luckily, my mind was more creative than reality.

When I walked through the door, the family was spread out, some seated on the couch in the great room, some around the large dining room table, some I could see through the windows out on the deck. I scanned the area and could see the baby was out on the deck, so I could at least easily make my entrance. As people started noticing our appearance, they came up and gave the typical friendly family welcome- a hug, questions about the drive, offerings of a drink. At first it was how I feared- just the same old family reunion, without anyone saying anything about the life altering events of the past year. When my great aunt saw us, she came up to me and gave me a big hug, saying loudly in front of everyone, “I am so sorry for your loss. And I’m so sorry we couldn’t make it to her services.” I breathed a sigh of relief, the tension in my shoulders releasing into her hug. “Do you have pictures? I would really like to see pictures.” I smiled and mentioned the video I could show her later.

My aunt did me a great service. She easily and quickly acknowledged my Mabel and did it in front of many others who had not yet. It was wonderful role modeling. The matriarch of this family reunion opened the door for others to speak up- and they did. I am so grateful for her kind words upon arrival and for those that followed in her footsteps.

After the initial hellos were said and people went back to the puzzles they were doing and the conversations they were having, I found myself standing in the great room looking out the window. I could see my sister sitting in a deck chair with her back towards me, holding her baby. I just stared. That’s what I should be doing. I don’t get that. The universe has not allowed me to mother a live child. Thoughts raced through my head. I didn’t realize what I was doing until an observant cousin sidled up to me and whispered “We know this is hard. We are here for you.” I was caught off guard, not realizing I was staring and certainly not realizing anyone else saw me doing it. A wave o f emotion hit me at that moment and I turned on my heels, heading back out the door. I needed air. I sat on that large wooden staircase crying until Chris found me.

I sat on the steps, unknowing another cousin was on the deck behind me, witnessing my meltdown, but it was okay. Those seeing my tears saw just how hard it was for me. After a few minutes I pulled it together, re-entered the house and started my week.

Some days are so bad.

I had to take Tylenol my face hurt so bad.  My forehead and sinuses were aching from the crying.  Some days I am amazed at how “good” I’m doing, meaning how I can find satisfaction in parts of my day.  Not happiness, but satisfaction.  I spent the weekend gardening and cleaning like a madwoman while Chris was off at a bachelor party and at the end of each day, I felt satisfied, productive.  I went to work and maybe made it through a day without tears.  And then there are the bad days.

I woke up from a dream that was awful.  I was trapped in a house with a potential killer and was trying to signal to those outside to call 911.  Rescue me.

When I woke up I was having a bad morning, for many reason.  It was bad enough that I didn’t want to get out of bed.  I actually yearned to go back to sleep, even if it meant re-entering that dream.  Somehow that felt more appealing than my reality.  In the book I’m reading right now, the author talks of her brother who developed Bell’s Palsy.  She tries to imagine what it’s like to wake up every day and in the fuzzy haze of near-sleep think everything is normal and then stumbling into the bathroom, seeing half your face paralyzed and reality hitting like a brick.  That is my everyday.  Half my life is paralyzed.

A friend called me at one point during the day and she could hear the pain behind the fake calmness I was trying to put on.  She asked what was going on.  I didn’t want to talk about it, so I simply said, “I have good days and I have bad days.”

Some days are so bad.

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.