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.

The Baby House

It seems sort of ridiculous to have a swimming pool when the house sits on the beach.  For several years in a row my large extended family would gather in the Outer Banks for a week of board games, surf lessons and gin and wine on the deck.  We found a house that was perfect- four stories of bedrooms, game room, Jacuzzi, pool, beachfront- and even a motel next store for the overflow of guests.  Then my generation became grown ups and we did things like getting married.  Our weddings became substitutes for the annual reunion.  Our parents’ generation wanted the fun to continue so they would move the reunion to England or Ireland, trips that we newly minted grown ups could not afford. But this year the Outer Banks trip was going to be resurrected.

We sat around the Thanksgiving table with some second cousins on Skype.  I was visibly pregnant and my cousins were announcing their news about their pregnancy to the relatives who couldn’t make it to Turkey Day.  We all knew that my sister was expecting too and so we joked that we’d have two houses at the Outer Banks this year- the main house and the baby house.  Stick all the screaming infants far away from the elders, so they could have their vacation in peace and quiet.  I looked forward to the trip as the time when I would be introducing my baby to my extended family.

Two weeks before Christmas, my phone rang and I could see it was my second cousin calling.  It was the middle of the day, but I was home on the couch watching tTV because my work had kindly given me some time off when we received the news that Mabel’s prognosis was poor.  When I saw my cousin’s name on my phone, I assumed she had heard the news and was calling to talk.  She is the wife of a pastor, so I feel like she has an almost natural calling to minister as an extension.  When I answered the phone she started talking about the Outer Banks- confirming we were coming.  There would be two houses, she informed me, so we really would have a baby house!  I tried to respond, but I was at a lost for words.  Through tears, I was finally able to say “Have you talked to my mom?”  She could hear the choked back sobs in my voice.  After I explained about my baby’s lack of fluid, her failing kidneys and underdeveloped lungs, I said “there might not be a baby!”

On Sunday we will be arriving in the Outer Banks.  Showing up to this long awaited trip with empty arms will be painful.  Seeing my sister with her baby, the one that was supposed to be Mabel’s playmate, will make my heartache in so many ways.  I asked not to be in the same house as the baby- I had to ask.  I hate asking for things like that because it makes me feel like a jerk (I know, I know, I’m not a jerk.  But admitting that I can’t separate the feelings I have about my baby from the feelings I have about others’ babies makes me feel like one).  I feel like I’ll be under the spotlight while there and ignored all at the same time.  I’m not sure which I’d rather.

I’ve debated not going on the trip.  We decided to drive there so we have complete freedom over our schedule- what we do each day, when we leave.  I want to go on this trip, because, frankly, I feel like I’ve given up enough.  I don’t want to have to give this up too.  It’s not the vacation I want- one where I’d have my baby  (or heck one where there would be no babies)- but I’ve already learned we don’t always get what we want.  If nothing else, it is a week off of work.  There is something that still doesn’t quite feel right about it- vacationing and having a good time, all when my baby died.  But this is life; I learn how to do the normal things.  I will learn how to vacation.

So in a few days we go to the Outerbanks.  I will stay in the baby house… without my baby.

The “if our baby dies” vacation

Chris and I were leaving one of the many ultrasounds after the oligohydramnios diagnosis.  Still the kidneys looked small.  Again there was no fluid.  The doctor had given us a potential theory on what had happened- an obstruction that led to kidney damage.  I think we needed to hear over and over again that her kidneys were damaged to really understand what that meant for our baby and our lives.  We walked out of the building talking about dialysis.  We had learned that dialysis for a baby is a daily undertaking.  I realized that if my baby lived, she would likely daily dialysis until she was big enough to get a transplant- at age 2 at the earliest.  That meant essentially we wouldn’t be leaving the house for two years.  No vacations, no trips across country.  I wondered if we would be able to make the 2 hour drive to my parents’ house.

People I know who have had a baby often lament how hard it is to leave the house.  A night out with their partner sans baby is an unusual event.  They can’t remember the last time they even stepped foot in a movie theater.  When Mabel was diagnosed with Down Syndrome, we knew that she would need extra services- therapists of different specialties that would come to our house or her daycare.  We looked into daycares that have worked with special needs babies and the Birth to Three program.  I found a baby sling that was made for kids with Down Syndrome in mind.  I looked into learning sign language and setting up a special needs trust.  We knew that she’d be in leg casts for weeks and then strapped into a bulky leg brace for 23 hours a day, so I thought about what kind of clothes she could wear and whether cloth diapers would be appropriate for her and her little clubbed feet.  So when Mabel was diagnosed with kidney issues, I tried to envision what I could do to prepare.  This preparation was all mental, because we wouldn’t know what we were dealing with until she was born.  I envisioned taking a long leave from work, giving up attending births, leaving my job entirely to care for my baby.  I would be home for my baby.

I never had the opportunity to worry about when I’d ever see a movie in a theater again.  It was a given that we would be pretty much homebound.

So as Chris and I were leaving that ultrasound, we wondered should we go away?  Right now.  We had two weeks before I was to go into the hospital.  Could we make a trip happen?  It was the middle of winter, so the idea of some place warm sounded blissful.  I was 32 weeks pregnant with a high-risk baby, so I didn’t want to travel far and didn’t think getting on a plane was a good idea.  And Chris and I had missed so much work so far, we were hesitant to take more time off.  So we nixed the idea.  I asked Chris in that parking lot, if our baby dies, can we go somewhere?  To get away, reset and forget all this?  We would go somewhere warm.  So in some messed up way, if the worse thing possible happens, if our baby dies, we would have something to look forward to.

Chris and I are going to Fort Lauderdale for four days.  We leave today.  We plan to sit on the beach and do nothing.  This was that something I am supposed to be looking forward to.  I am and I’m not.  We are going on our “if our baby dies” vacation.  How do I look forward to that?