Trigger warning: This post contains discussions of infertility and trying to become a mother. Please steer clear if these topics make you uncomfortable.
In the past, I wanted to be a mother more than anything.
My husband David and I started trying to conceive in the fall of 2013, when I was 28. (Primarily at my insistence. David wasn’t so sure he wanted a baby until he turned 30 in 2016). These attempts were derailed when I landed myself in the hospital with pelvic pain and was diagnosed with endometriosis in June 2014.
That first endometriosis surgery, mentioned above, was a procedure called ablation. This type of surgery is inadequate to successfully treat endometriosis. It only made my condition worse. I was told by my OB/GYN to either take a drug that would put me into temporary menopause or to take narcotic pain medications so we could do the act necessary to conceive. Yes, you read that right. Sex was so painful, a doctor suggested I take narcotics to be able to get through it and get pregnant.
Once I had proper excision surgery to treat my endometriosis in October 2014 at the Center for Endometriosis Care in Atlanta, we hoped a baby would not be far behind.
2015 was an unmitigated disaster as far as that was concerned.
But that didn’t hold a candle to 2016, when the reason for my infertility was finally discovered through a simple blood test and an MRI.
In 2016, I had pelvic surgery, brain surgery, and an aneurysm stenting all within a four-month timeframe.
In the past, I wanted to be a mother more than anything.
But now? But now. Now I have a type of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). Basically, the part of my nervous system that controls “automatic” processes such as heart rate, blood pressure, digestion, and sweating doesn’t work properly. My blood volume is too low and what blood I do have pools in my lower extremities. This causes low blood pressure, an elevated heart rate, dizziness, lightheadedness, confusion, and brain fog.
In the past, I said, “I’ll do anything to have a baby.”
But now? But now. Now all I have to say or write about the subject is this:
I would be a terrible mother.
How can I be a good mother when there are days I can’t even get out of bed? When the baby is, well, a baby, you can plop them down wherever. But what about once they’re mobile? There’s no way I can chase a toddler around without potentially passing out.
And what about when they’re older?
What if they want to go swimming with friends in our pool when David is at work? I’ll have to sit out on the deck in the summer heat to watch them. That heat could make me pass out.
What if they play sports and I can’t go to their games because I either can’t sit upright that long or it’s too hot?
What if they want to go to the beach up the road and I have to sit on the hot sand in the summer sun? Again, passing out is a definite possibility.
What if they want to do a family trip to Cedar Point? Amusement parks are one of the worst enemies of someone with POTS.
What if they have a band/orchestra/choir concert and I can’t go because I can’t sit upright in a chair that long? (My max is about two and a half hours).
What if they want mommy to play tag? Or chase them in the snow?
What about field day at the end of the school year when the parents help with the games?
What about chaperoning school field trips?
I don’t want to be the mother who can’t be there for her child. The mother who can’t watch her children have fun and do the things they love. A parent being absent from activities that carry such meaning to a child can be devastating. I remember being crushed when my dad had to miss one of my middle school concerts because there was a jury out for deliberation. Of course, I wasn’t mad at my dad; it wasn’t his fault. I was mad at the defendant for being stupid and committing capital murder in the first place. But if it had been a constant thing…if my mom or dad had never come to my concerts…I would have been crushed.
It means everything to a child to have their parents see them do something they’re proud of.
My Own Limitations
David keeps saying I’ll be able to do these things. I have to remind him that so far, my track record is awful.
I can’t even keep my house at an acceptable level of cleanliness. There’s far too much for David to be able to do it all himself. I’m quite literally ashamed of my home and for the most part, I refuse to let people come over. It just makes my feelings of being a failure even worse.
I can’t go on long car rides because I can’t sit upright for that long. (Again, that two and a half hour limit.) That’s why I crashed into a flare after a recent doctor’s appointment. I was upright for two hours and twenty minutes total. Certainly close enough to my max. It resulted in a four-day long flare during which I could barely crawl out of bed. I haven’t even left our city since November 2016.
For the same reasons, I can’t go to a movie theater. I can’t go to a salon. (Which is why I haven’t cut my hair in a year and eight months and it’s longer now than it’s ever been in my 32 years of existence.)
You Can’t “Push Through” POTS
David keeps trying to encourage me by telling me I’ll be able to push through it. I told him it’s not like being tired or even being exhausted. I can’t push through tachycardia and low blood pressure. I can’t push through the feeling that I’m going to pass out that I experience when I stand up or when I go outside if the temperature is above 65ºF. This is something that is very difficult for people who don’t have dysautonomia to understand. Attempting to push through when my body is telling me “STOP!” will only make the symptoms worse. It can even be dangerous.
He also said he thinks once we have a baby, I’ll somehow find the mama strength to take care of it. I tried to explain, “Being all happy about having a baby isn’t going to convince my autonomic nervous system to start functioning properly again. Celiac disease and the brain tumor screwed up how my nervous system works. My underlying medical condition is not going to change because I’ve given birth.”
The thought of being a mother with dysautonomia terrifies me. I know it can be done with tremendous difficulty, but…should I agree to knowingly subject a child to having a mostly absent mother? Do we attempt to bring a child into the world? My heart is so torn and conflicted. I don’t know what to do.
Read more about Laura's story on her blog: https://ribbonrx.com/