5 Surprises While Disabled & Pregnant

 

1. I’m an “older” mom (I mean, I guess! I was only 34) and they wanted to do the non-invasive prenatal test (NIPT).My husband said yes because and only because the doctor mentioned it and we’d find out the gender verysoon. I was taken aback at how uncomfortable it made me. I’m prochoice, but they wanted to take a disabled persons blood to make sure that the baby inside the disabled persons body was not disabled. If they were disabled there would be talk of “what to do” and “choices.” What do we do about this baby? You would never ask that about a typical baby. You wouldn’t even joke if you still wanted to keep it, but if it was a disabled baby its life was up for debate. You can’t test for bipolar disorder —but what if you could? My mom lost her first baby from amniocentesis. When I asked her about it recently she said, “Not everyone wants a disabled child.” They didn’t try the amniocentesis with me — and I’m disabled. If she knew — would she have kept me? She’s a disability activist now, but that’s because of me. The weirdest part was no one else felt this way. No one understood my hesitation. I ultimately had the test so if there was a problem we could address it after birth — but not to end the pregnancy.

 

 

2.When I went to the ER very late at night for bleeding and cramping at 17 weeks, I figured we’d be waiting awhile. Nnnnnope. People love unborn babies! I cut a bunch of people in line. Once, 18 and suicidal, I was turned away from the ER because, as the nurse told me, “there are actual sick people here.” My mom was enraged. I remember her yelling, “She IS sick, you’re not going to help her?” She’s an advocate and loves and respects my advocacy… but I still can’t get that sentence out of my head: “Not everyone wants a disabled child.”

3.In my pregnancy I developed spd. I became temporarily physically disabled and used a walker. The worst night was when we drove to labor and delivery and as soon as they heard I was bipolar, they would not treat my pain with oxycodone as my doctor prescribed. My husband said, they think you’re lying to get drugs! I told my doctor the next day, whose sister has bipolar disorder, and he was pissed. I’ve never been in so much pain and not believed by doctors.

4.Chronic pain is awful. I never really thought about what it might be like, but you can’t think, you can barely concentrate to read or write. It’s a nightmare. I would wake myself up screaming in pain. I was getting little sleep. Every nurse and doctor said, oh, that’s normal. I said yeah,but I’m bipolar — if I dont sleep I’ll go crazy. At the end of pregnancy I got closed eye visuals. My OBGYN was not concerned. My psychiatrist was! Luckily I had my gorgeous daughter and was able to take painkillers as needed.

5.I chose to formula feed so that I could take new and higher doses of my medication to ward off any psychosis.. I was expecting to go crazy and had a support system. I never went crazy, and I was supported, but I got some heat about formula feeding from uneducated friends and family members. I wasn’t expecting it from the medical community. Time and time again I was told that breast is best – but having psychosis and a new baby at the same time spells trouble. My breast milk felt laced with poison. Once I was sitting under a sign that said a breast fed child will be smarter than bottle-fed baby. Then the nurse said,are you still on the following medications? Prozac?

Yes.

Lithium?

Yes.

Lamictal?

Yes.

Seroquel.

Yes.

Klonopin?

Yes.

Oxycodone?

Yes.

Are you breastfeeding?

unmm, nope.

If you are going to embark on a medicated pregnancy, keep these things in mind. Advocate for yourself. Don’t go on “typical” pregnancy sites because people there will tell you need a kale smoothie. Have a kale smoothie, that’s great, but you need more than kale or yoga or acupuncture. Set up a dream team of advocates that will be by your side and ready to fight for you. Your pregnancy doesn’t have to look like your friend Cynthia’s pregnancy. Find the love and joy in your own pregnancy and have back up plans for your back up plans.

 

 

Monday Magic At Home

Watching Elro enjoy the outdoors where I grew up made me realize how the landscape shaped me and made me wonder if my mom and dad’s decorations also influenced me. So, I took a little tour of my house and the answer is, yes! I see pieces of my personality as well as what kind of things I’m drawn to making strung all over the house. Here are some examples:

1

Monkeys in love.

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Two of my mom’s rugs — she uses them to decorate in every stage they’re in which I think is awesome.

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Elro enjoying my bed.

 

 

I bought and painted (and added paper) to this house box. My mom added this ceramic scene.

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A simple, handsome bird.

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Lots of different kinds of pictures on the wall (taken by my dad) with a vintage mirror.

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Adding quartz to a shell.

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My grandmother’s needle point.

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I think of this little plush girl every week.

Thanks for taking a little trip to my favorite things inside the house I grew up in!

♥️,

Rae

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Creativity vs. Anxiety

The absolute main way I deal with anxiety is with creativity. Anxiety is a destructor and creating something, to me, feels like a solution.

Here are some ways to become more creative:

Pinterest! Get and pin ideas.

Keep a craft journal and draw out your plans.

Find out what your friends do to get crafty and join in.

Planning the craft is the most therapeutic part for me. There are always certain items I’m looking for and thinking about. For example, thinking about this little thing got me through a tough week. I wanted to find vintage salt and pepper shakers to use as vases. It’s a simple idea but I got to think about what stores to shop at, if I could make them picture frames, too. I switched from an anxious thought to a vintage salt and pepper hunt. So soooooothing.

Today I was at Target buying some diaper related stuff and found these guys on clearance for two dollars each. I loved that they all matched so I bought them — and I immediately started thinking of the next project I want to do. I’m glad I developed this habit to trick my brain from focusing on negative thoughts. ♥️

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Barbed Wire Cats

I was following a poetry prompt from The Mighty because I’m trying to strengthen the poetry muscles that motherhood weakened.

The prompt was to write “behind our illness.” I personified my illness and wrote the following:

—-

Behind My Lashess

is a woman built of broken glass,

inky veins,

barbed wire cats hissing,

fireworks in bloom.

She plays the top hits of the 80s,

collects shrieks before death

and rainbow anything.

I hate her.

——-

I posted it to Instagram and was then unrelatedly contacted by a woman asking if it was true she could be married and have a baby because the doctor who diagnosed her as bipolar told her that — yet I was obviously married with a baby and super bipolar.

I immediately deleted my poem before she saw it because I didn’t want her to think it’s okay to think your illness is another complicated person inside you — a part of you you’re allowed to hate. Expected to hate. 

Should I hate that part of myself? It has brought me grief and pain… but without it I couldn’t help anyone. If rather be a ray of light than just a basic Rae and all my experiences have brought me to my current situation, which happens to be gorgeous.

I asked my brother what he thought and he said, “Expressing something artistically doesn’t necessarily count as self-hate. It might make things better. Is the expressing transforming the artist more toward healing(of self, of others) or does it build momentum for the deathwish and/or self-hatred? We all have complicated relationships with the parts of ourselves we struggle with.”

Then I thought about all the times I’ve written about my illness as a negative thing that could destroy me and — naming that can be powerful. It has helped me. It has given mE a complicated villain I can defeat. Telling the truth matters. There are some cute felt animals on this blog and plenty pics of my wonderful daughter….but now there are barbed wire cats hissing as well.

And that’s okay. Because it’s true.

Mindful Monday

It’s March and my March resolution is to stop apologizing constantly. I’ve replaced most of my apologies to “thank you” as I’m usually apologizing when help is offered.

This week’s goal is to paint a tree in Elro’s room. Here is a leaf I made for it:

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I’m trying to get back into writing poetry more often, so I’m reading more poetry which is the key to learning how to write it!

Our tabletop policy (nothing in it but flowers!) is going strong! Makes everything more peaceful in the house.

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I’m still adjusting to my new meds but it seems to be getting easier.

The featured picture and the one on the leaf was taken yesterday and makes me feel like spring is coming. ♥️♥️♥️♥️♥️♥️ I can’t wait. That’s probably why I’m painting a tree in Elro’s room while it’s pouring outside.

Here is a quote I found for the week in a poem by Marge Piercy:

The pitcher cries for water to carry and a person for work that is real.

♥️

Have a great week! Here was our February in the one second a day app:

 

 

 

“This Is Us” guest post!

::This is a guest post by Lisa Albright Ratnavira, who is an amazing poet and dear friend. Her relationship with her husband, artist Gamini Ratnavira, is one I look up to and hope to emulate.::
This is Us…
Over 20 years together side by side selling art and raising children, traveling and hustling…once I said, “in our next life let’s be the buyers, not the sellers!” We laughed until we cried.
These years have brought us closer through sold out art shows to not selling a single painting; to kids in sports and college creating and falling in love to an empty nest; to one returning.
We have survived the worst nightmare a parent can endure…the loss of our precious daughter Natalie over 6 years ago to an atrial venous malformation or brain hemmorhage. We fell apart, we cried, we took time to grieve deeply and then we began building scholarships and a nature center in Sri Lanka in our only daughter’s memory. I wrote poems about the labyrinth of grief; Gam added a dragonfly to each painting in memory of her effervescence.
We love deeply; we begin each day with a cup of tea and watching our birds at the feeder. We garden, we work together and we count our blessings for each one of our children.
We are two people who met over our love for elephants; fell deeply in love, fell completely apart; but never once let go.
This is Us.
::follow Lisa @lisaratnavira and @gamaniratnavira::
Author bio:
Lisa Ratnavira resides in Fallbrook, CA with her husband, wildlife artist, Gamini Ratnavira.  Their art and poetry connect in her books Maiden, Mother & Crone (written with Rae Rose and Penny Perry) and Traveling with Pen and Brush and Grief’s Labyrinth and other Poems.  She has actively published in San Diego Poetry Annual for over a decade and holds an MA Degree from Concordia University in Irvine, Ca.  Lis has traveled to over 16 countries including: Singapore, Sri Lanka, England, Africa, Bermuda, Bahamas, Bali, Trinidad, Panama, Costa Rica, Spain, Canary Islands, the Maldives, Japan, Canada, Mexico, and throughout the USA.  Her sons Beau and Brooks reside in Japan and Fallbrook.  Her daughter ,Natalie, is free from an earthly address.  She often visits in the form of a dragonfly.