All that work…

I feel like this is some cruel joke.  Here I was being all pregnant, expecting a baby but hahaha! Just kidding! You don’t get a baby!  Fooled you! Its almost like it didn’t count.

At first I was obsessively looking at pictures.  Proof that it all did happen.  It was so fast- my labor and then her life.  Too fast to process as it was happening.  I looked at her birth photos a lot, to remind myself that she really did come out of me.  I looked at photos of her on the ventilator and then after we took it out.  I looked at the photos of her after she died, some of my favorites because she looks just like a little doll.  And then it became harder.  I could only look at them if I was ready.  We had her framed 8×10 photos from her wake displayed around our dining room.  I found myself sitting with my back toward them.  It was too hard to interact with people in some sort of normal fashion while looking at my baby.  And then here I am obsessing over photos again.  I want her photos everywhere- a shrine to her in my dining room.  I feel like when I move them- and just move them to the bookshelf and the bedrooms- I’m making a statement.  A statement that I’m done with the initial grieving.

Sometimes it’s easier to get through the day pretending it didn’t happen, which is not really fair to me or to Mabel.  But the pain is just so so much.  Sometimes I feel think she is speaking to me through them- there is one just after we took out the vent where she’s looking up at me.  It could be a look of  “Mom? Help me.” Or  “Thank you, Mom, I’m ready.”  I hope my baby did not suffer.

I remember earlier in pregnancy when I knew about Mabel’s Down Syndrome and found out people were pregnant, I would be very emotional.  Chris and I had been doing a lot of work adjusting to the idea of having a baby with Down Syndrome.  We joined facebook support groups for people who had a prenatal diagnosis and chose to continue the pregnancy.  I posted frequently with updates on my pregnancy, asking questions “Has anyone taken choline?  Anyone else have experience with clubbed feet?” and responding to others queries, often relying on my midwifery knowledge.  We went to our state’s annual convention for the Down Syndrome Congress- met other people with children with Down Syndrome.  I learned about a clinic nearby that helped coordinate care for children with Down Syndrome and how to potty train a child with Down Syndrome. I was reading memoirs about parents adjusting to the diagnosis and raising their children, with and without medical problems.  I talked to others in the area who had children with Down Syndrome and furtively wrote down their recommendations.  We started investigating therapists and childcare that could handle a child with special needs.  I was trying hard to accept the diagnosis- and I think I was doing it well.  What scared me was the risk of loss.  A midwife’s worst fear.  And with such a high risk of loss, the pregnant women around me were reminders of that risk.  At the time, I was thinking mostly stillbirth, but ultimately I was just afraid that all these people around me would have one, two, three babies and I would have no babies.

And that’s where the cruel joke sets in.  I did all this work and don’t even get to bring a child home?  My fear came true.  Is life trying to teach me a lesson? I worry too much, so life is teaching me the real things to worry about?  Showing me the worst, so that when I go on, I’ll be able to see just how strong I am?  No thank you.  I know plenty of others who are strong but don’t lose their babies.  I thought I proved my strength by welcoming a baby with Down Syndrome?  Why did I do all that work for everything to be taken away?  It’s not fair. Just so simply unfair.

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7 thoughts on “All that work…

  1. Hugs….it’s not fair!! It’s cruel, tragic, and devastating that we lost our babies. It doesn’t make sense, and in this lifetime, it probably never will. I’m so sorry that little Mabel isn’t here with you. I am praying for you

  2. It’s cruel and unfair and there’s nothing that will ever explain it. You wrote that you have a colleague/friend who told you that everyone has a purpose. And as you so beautifully said at Mabel’s service, she paved the way for the safe delivery of her siblings. Your Mabel is a pioneer. Here and reading, with love from Boston.

  3. Mabel was a pioneer indeed! Because of you and Mabel I am learning a lot about Down Syndrome! I even started looking at what types of foundraising events we have here in Boston so I can participate. I am still reading and sending love your way!

  4. I hope you know that we all still have you in our thoughts even in the weeks and months to come, I’ll be thinking of you. Following your story and thinking of you. xo

  5. I’m an enormous over thinker. Sometimes it can be debilitating but mostly it helps me organise my thoughts and be at peace with what happens in my life. Long term I find that because I have thought of every angle and every best/worst case scenario I am able to handle the emotional roller coaster a bit easier. I cant imagine what you are going through but be kind to yourself. You are grieving.

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