Of weddings and distractions

I went with my friend for her hair trial for her wedding last week.  Her wedding is in April, the month after my due date and it’s been something I’ve been really looking forward to.  My husband and I are both in the wedding party.  When I was early pregnant and they got engaged, I pictured asking my mom to come hang with the baby while we went to their wedding.  When we first got the Down Syndrome diagnosis and they had asked us to be in their wedding, I pictured bringing our little carrot to the hotel to get ready- taking breaks from makeup application to breastfeed and sneaking time in before the reception to pump.  I pictured bringing my baby is his/her little casts for the clubbed feet and the gaggle of girls cooing over him/her.  This image helped me visualize life after birth- life with a baby- life with a baby with Down Syndrome.

 

I got a kick out of trying on bridesmaids dresses 20 weeks pregnant, trying to guess what my size would be one month postpartum. How big my boobs would be.  Thinking about how to get the dress down to pump.  Worst case, I thought about my baby being in the hospital preparing for surgery or something- but I viewed it as a temporary thing.

 

Her wedding is still something I am so so excited about.  I really like talking about it- the preparations, the ups and downs of planning.  It reminds me of planning my wedding (just over a year ago), which I loved. It reminds me of a time when I was really happy and excited for the future.  I’m riding on the coattails of her excitement.  When we talk about her wedding, I kind of forget about what’s going on with me.

 

Now if I think about her wedding, I’m envisioning a different scenario for her wedding.  Maybe there is no baby.  The wedding, though very different than I imagined, might be a distraction from my grief.  Might actually get me out of the house.  Might remind me that not everyone has kids and look at how much fun they’re having!  Might help take my mind off of me and think about someone else for a bit.

 

I know there’s a chance I might not be able to go to the wedding at all, if my baby lives and is sick and needing me.  It’s weird, but that might be something to wish for???

 

She’s using the same hair stylist I used for my wedding and so it was fun to go with her to the trial. She looked great!  I kept thinking she looked like a model once it was all done.  And thebride-to-be seemed to like it too- which made me especially happy because I recommended this stylist.  It was all lovely.  Though the night ended with one last reminder of what is to come.  On our way out the stylist said “Oh the baby will be a month old when at the wedding! I’ll get to meet him/her!.”  I smiled and responded “Yup.”

 

This is the stuff I’ve been trying not to let myself think about.  What happens after.  People I will see, who will ask unknowingly about the baby.  How do I respond? How do I respond if my baby dies?  No one feels good talking about a dead baby.  How do I respond if my baby lives and is really sick?  Do I lie and just say fine?  Often people ask questions to be polite and aren’t prepared for the real answer.  Some people would honestly like to know.

 

I know I don’t need to have answers right now.  I know I don’t even need to think about it right now.  Frankly, I’d prefer not to think about it at all.  But I’m just constantly reminded that this is something I will have to deal with.

 

Distraction.  It is a tool I had been learning to cultivate before my pregnancy to help deal with my anxiety.  Now it is something I use everyday. Being a part of my friend’s wedding is a wonderful distraction.  It doesn’t change reality but it allows me to experience feelings I would have otherwise forgotten.    I encourage others to practice the art of distraction, because you never know when you’ll need that tool.   I used it the other day with a patient who had a terrible needle phobia.  She needed a procedure and I went with her to support her.  I used distraction to help keep her mind off the upcoming needle.  She was going bridesmaids dress shopping over the weekend and we used that as a shared experience- I talked about my friend’s wedding with her.

 

The only downside of distraction is temporary.  It will be interrupted with reminders of reality.  The goal is to take those reminders in stride.

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4 thoughts on “Of weddings and distractions

  1. Meghan,
    I have been making my way through your blog from the beginning. I have wanted to comment on many posts but i felt strange commenting from this point in time after the threads of hopeful and encouraging comments. I just wanted to let you know i am learning from your experience(s) and attitude, and getting more and more of a sense of how fitting the title of your blog is.
    Keeping you and Mabel in my thoughts. xx

    • thak you for reading back typhanie. You made me go back and read this post too, and I am struck at my own words. ” What happens after. People I will see, who will ask unknowingly about the baby. How do I respond? How do I respond if my baby dies? No one feels good talking about a dead baby.” And now I’m living it. My head still swims trying to process it all.

      I remember picking the title. at the time I knew my baby had Down Syndrome, which was unexpected with my age and lack of any family history. And I wanted something to play on the pregnancy- hence the expecting. I figured I’d morph the blog into one about caring for a child with Down Syndrome. I am taken aback about how apt the title was because now I’m in the unexpected. I am not parenting a child with Down Syndrome. It’s like I knew, somewhere deep down that there was more to come…

      thank you for reading.

      • It is disorienting for me to imagine that you had months of living in a limbo, knowing there was something intense coming but not knowing what. I’ve seen in other posts that you tell people who ask you about Mabel that you knew she was very sick. But i can’t imagine you can ever get ready for your baby’s death.

        I am so sorry you had to deal with all this unexpected. xx

      • I thought I was getting ready for it- I really did, but turns out I had no idea. there is no preparing for your baby’s death. I sometimes tell people we new she was sick in a way to make them feel better (I know, I know… but sometimes it eases the horrible awkwardness) and sometimes I tell people we knew she was sick so they know the extent of my struggle. I have been grieving for a long time. And sometimes I tell people we knew she was sick because I want them to know how I put on a brave face everyday and cared for pregnant women, all while holding that secret. And sometimes I dont tell people she was sick, because whether she was sick or not, its all just sad, right? You and I such different circumstances, but still both sad. There is sadness in the suddenness of a baby snatched with no warning. and there is sadness in buying only one outfit for your baby- her burial outfit. babies dying is so very sad.

        thank you so much for reading back. it truly means a lot xxx

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