Monday, October 3, 2016

Our Scarlet Letter(s)

It struck me last week as I walked down the aisle of the grocery store, Mildred sitting in the cart in front of me watching all the people and all the things (per usual) that so much has changed. I have changed so much. We've come so far in just 16 months, this Millie girl and I.

I vividly remembered walking the aisles of my favorite store (which shall remain nameless, but its logo is a big red target), overcome with a paralyzing uncertainty, wondering what everyone saw when they looked at my baby. I, of course, was infatuated with my newborn love (because what Mama isn't? But also:

yeah. that's what I thought. ;)

I felt like there was this enormous question mark hovering above our heads in true Hester Prynne fashion. I felt the eyes of every new adorer as they seemed to search her closely for answers: "Does she?...Doesn't she...?" I was defensive against an attack that I never actually encountered, but felt that somehow would come. I felt that the whole world could see a diagnosis that I had missed, and I still couldn't see it. I also could feel the weight of people's questions as they fought to keep them inside, unsure of how to ask them. 

I remember feeling desperate for people to just tell me what they were thinking, or wondering, but also being terrified of the answers, or lack thereof - feeling like I owed the world an explanation, but resisting feeling like I was putting a disclaimer on my own daughter.
It is interesting to look back now at that time of confusion, and pain, and postpartum hormones (so many hormones!) and see it with different eyes. What was I so afraid of? So much. I was afraid of so much.

 What will her life look like? Will she be a vegetable? Will she have a fulfilling life? Will she ever go to college, get married, have kids? Will she be able to be independent? Will we always be outsiders now? Is everything going to always be hard and different? Will she still be beautiful? Will people make fun of her? What will her ability level be? What is it going to be like to have a special needs child? 

Here is what I realize now: those questions aren't all that dissimilar from first time (or new again) parents. The difference is how much we take for granted as being a given. The hard truth is that nothing in this life is a given (save for death and taxes, as my Papa Joe would say). Eating, breathing, crawling, walking, reading, speaking, interacting, etc., they are not guarantees. Each of those things is an accomplishment in and of itself, just ask any special needs parents and they'll tell you how amazing each of those steps are. And we so easily forget that health is not a given for any one of us, Down syndrome or not.

Down syndrome has given me the gift of perspective.
Because of Down syndrome, we get to work really hard, and truly celebrate each milestone with gratitude.

So...
when you're in the store and you run into the newly postpartum mom or dad, what do you tell them?

"Congratulations. He/She is beautiful! What a gift!"

because no matter what, they really truly are.

1 comment:

  1. Maegan, while reading these last two post I think what you seem to be forgetting is how "We" constantly tried to compare Mildred's growth to the text book growth of a most children. For months we used friend's children and children we encountered to measure Mildred's growth against theirs. Of course trying predict the severity of our Mildreds's obstacles. Maegan, with the education you have provided us and watching her development over the past 16 months the question as to weither she will ever do it no longer exists! As any other child she will do it when she wants to. Mildred is her own unique self and we should never compare her to others. Dad

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