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.

 

 

1 Comment

  1. You are helping so many people with your vulnerable and honest blogs. I had Fifths Disease and my sister in law got Chicken Pox both high risk pregnancies allowed abortion as an option. My world would be flat without these two beautiful souls in my life. I researched on my own and made a decision (as did my sister in law) I was comfortable with. Thank you for reminding me of this it was 24 years ago….xoxo.

    Like

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