7 years ago I found out that I was carrying a child that was given a “zero chance” of survival on account of her diffuse fetal hydrops. We had an amniocentesis, and found out that she was coming with an extra chromosome, that she had Down syndrome.
Honestly, this is all so ridiculous to me now, it’s hard for me to write this and take it seriously.
The angst I felt! Holy shit. The prayers I prayed, hoping against hope that the amnio would be wrong. The hours that I spent walking and crying. Time spent poring over photos of children with Down syndrome, reading blogs, trying to get a sense of some alternative normal.
The misery. Oh. My. God. The misery! It was so real and yet from where I stand now, it was so stupid.
Maybe it’s not really fair to say that though. I mean, the misery and concern for my child and her health, her well-being, was real. It was very real. The struggle over her home birth was real, and the placenta that was left in me by the midwives after her birth was also real. The paralysis that I got from the infected placenta was real. The changes that I made in my own life and in the life of our family were also very real. I quit my job. I became a stay-at-home mom. I started getting into farming. I became committed to a life lived as authentically as possible. I inspired my husband to want to quit his job and travel down the Pan American Highway in search of a better place for our family. Then we ended up moving here, to the Lost Coast of California, because my brother bought a farm and wanted us on it! I mean, there is so much that changed.
Down syndrome was sort of the catalyst for that change –
Down syndrome came with our daughter Moxie, a part of her physical package.
I can honestly say that Down syndrome changed our lives. But it changed our lives only inasmuch as we let it. We opened ourselves up to change, holding fast to a dream of our daughter’s personal power, with/without the extra chromosome.
Now, I don’t know if that makes sense or just sounds like a bunch of goofy new-agey gibberish to you reading.
It’s like this: we could have gone on with our regular lives in the San Francisco Bay Area. I could have continued to work, my husband, too. We could have put the kids in daycare, and struggled to pay all the bills, living our life on a treadmill. We could have plunked Moxie down for all the therapy that was recommended to her, and I could have swung with the school district when I went in for the IEP. I could have turned into a fighter-mama-“Speechless“-type.
That could have been our life.
That’s not a bad life. I know that many of you reading this are living a version of that life. But for Mikey and I, having grown up as “third culture kids” abroad, we didn’t have strong roots or many friends in the San Francisco Bay Area. It wasn’t worth it to us to go through all that to stay there. We didn’t have enough holding us, and the dream of owning our own place wasn’t in reach there. My stable, great job was probably the strongest thread that was binding us to the area.
That thread was screwed up by getting paralyzed by the placenta that was left in me after Moxie’s birth. That week in the hospital, hemorrhaging blood and with a raging fever really hammered it home that life is fleeting. I had a gut realization that I need to make more of this life than I have, simply because that’s important to me. I need to quit playing it small and safe, because that does no one any good, least of all, me.
So I opened myself up to change.
And I opened myself up to the idea that Moxie has personal power, that she will grow into an awesome person. My job as her mother is to provide her with the right environment, give her freedom and ways of expression.
6 years into parenting a child with Down syndrome
6 years into this parenting a child with Down syndrome and here we are. I am not the fighter-mama-type. I don’t need to be. We are in a highly supportive environment at The Best School Ever. I’m not interested in living in a place in which I have to become the fighter-mama-type in order to have my daughter accepted. Would I move again, if she wasn’t accepted anymore here?
I’d try and make it work first, of course – our community is so small that it would definitely stand a chance. But I would move if that would make it better for Moxie.
I would rather change her environment than change her.
And I know that my husband Mikey feels the same way as I do.
Even though we would do pretty much anything to ensure Moxie’s rightful place in any given community, Down syndrome itself plays a precious tiny bit of almost nothing in our day-to-day lives. Moxie bolts and she has a difficult time talking. She learns in her own way, space and time. But other than those pieces, Down syndrome has no affect on our lives.
That’s why thinking about how it was 7 years ago feels ridiculous. That’s why it all feels so stupid. Because while Down syndrome changed our lives as far as we allowed it to, it plays such a miniscule part of our lives now.
We have a beautiful daughter who will hopefully one day be proud that she has Down syndrome. And it’s an honor raising this really cool person, helping her learn to navigate her way through this world.
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