I Won’t Be a Good Mom.
Trigger warning: This post contains discussions of infertility and trying to become a mother. Please steer clear if these topics make you uncomfortable.
Those who have followed my blog since its beginning in July 2016 likely know a lot more about me than my more recent followers who’ve hopped onto this funky train since the start of 2017.
For the many readers at this point who likely don’t know much of my history, here are the relevant CliffsNotes. (Am I dating myself?) There will not be a test.
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.
💛ribbonrx
14 thoughts on “I Won’t Be a Good Mom.”
I feel exactly the same way about potentially being a parent someday. My limitations due to chronic illness and pain are terrifying to think about when you throw a newborn baby into the mix. I’m sorry you’ve been struggling with this, too.
As for the heat intolerance leading to passing out, I’ve found that cooling gear works wonders. There are vests, wristbands, cold water misters, and even towels that are designed to keep you cool. I also keep a handheld fan with me at all times.
My point is… Don’t give up hope just yet. I hope you can find your loop holes. ❤️
Thanks Dannie! I’ve looked into cooling products a little, but haven’t really had the opportunity to use any since I just stay inside! 😆 Hopefully we can both figure out our motherhood issues someday! 🙂
I can relate to that! 😂 I have a bunch of cooling stuff that I never use because I’m always in bed anyway. ❤️
I’m sorry to sound like the negative Nelly here, but I think having a baby would be the wrong decision, given your health situation. I’m glad you’re realizing that might be the case instead of just blindly rushing into parenting without regard for the future.
I think you’re wise to reconsider having a baby when your health is that precarious. My husband and I considered adopting when we got married. I had already had a hysterectomy, so this was our only option, but I was living with severe Fibro and osteoarthritis at the time and my two kids were 11 and 12. Looking back, I’m glad we didn’t go through with it. He would have been an excellent dad, but my health got worse, and we had some extreme difficulties with our daughter, who ended up using drugs and getting kicked out of the house, etc.
I know it’s hard, when it’s been a dream for so long, but sometimes the realities have to come before the dream. You can’t always power through things no matter how much you might want to, and I know you would NEVER want to put your child in any danger. You and David would never forgive yourselves if something happened to a child or to you if your health issues prevented you from saving someone in an emergency.
I wish you all the best, in every regard. If a miracle happened, that you were somehow cured, then by all means, a baby should be in your life. But not now, with your health up and down.
Hugs, Pamela
Thank you for your perspective, Pamela! It’s always good to consider all sides of a situation, good or bad! 🙂
I read your blog post and cried. I was a young married mom when I found out I had dysautonomia. Oh I had signs and symptoms of it since I was 14. It took me 13 years to get a diagnosis. I managed to earn a college degree, teach school for almost 10 years, and raise my daughter to her senior year of high school before my body completely collapsed on me. However, the road was harsh. The cost at times was high to my body. I should’ve quit my job two years before I did but finances didn’t allow it and when I did collapse, financial ruin ensued. Many of the worries you mention DID happen during our daughter’s childhood. My pregnancy and her birth were difficult. I had preeclampsia, a 32 hour labor ending in a C-Section. When she was 7, I had an ablation and got my diagnosis. I slowly started going downhill, but I fought. Our daughter doesn’t remember me ever being well. Doctors told me not to have another kid. My husband had a vasectomy. When she was 13, I was diagnosed with gastroparesis and progressed quickly. I cannot give you any advice. I can only share my experience and tell you that today my daughter is 22 and I am 42. We are best friends. I’d go back and have her again. She has told me she doesn’t blame me for something I didn’t do to myself. Having children is a serious decision even when healthy. You bring up many valid fears. I wish the best for you and your husband. ❤️
I wanted a baby when I was young. But then fibromyalgia, chronic migraines, depression and vertigo. I really thought that would just be a lot to put on a child when I can’t function myself. My spouse is the one who is sterile. But we decided a bit back to not go any route to have a child. That it isn’t just possible health wise.
Hello! Thank you for sharing. I, too, went through infertility (secondary), and after trying drugs, I was so excited to get pregnant with the aid of our 2nd IUI procedure. It was one of the most difficult times in my life. I can relate a lot to your story. I, too, have/had endometriosis and had several excision surgeries & a ruptured ovarian cyst. I have Epilepsy that has been so severe, that it has taken me from my profession as a therapist working with children, to being on Disability. I have severe, chronic headaches/ migraines,partly due to the concussions Ive had during falls related to seizures. My father died 3 weeks before my precious baby boy (the one concieved through IUI), was born. My father was my absolute hero. I think, due to all of the emotional stress, I developed severe preeclampsia right after his death & the baby had to be delivered immediately. My blood pressure remained dangerously high and my baby was released from the hospital before I was. High BP can easily trigger seizures. I was on meds for BP for months and was told I had developed a rare case of “posteclampsia”. But then, suddenly, I began falling a lot. I was getting hurt, even broke my arm. To make a long story short, after a stay in the hospital and many tests, I was diagnosed with POTS. My body went the opposite way and now my BP was way too low. The drs feel the pregnancy triggered it. My POTS is quite severe and is very difficult to live with….but I do. Recently, Ive also developed a severe immune deficiency and am in the middle of more testing. I may be on IVIG for the rest of my life. I deal with chronic clinical depression, and have since I was 18. Sorry to write so much…I DO have a point to make. Ive wanted to be a mother and have known it as a calling, since I was very young. I knew that, no matter what, I was going to be a mom. When I was diagnosed w Epilepsy, in 2004, after suffering a massive seizure at work, I feared my dream of being a mom, was over. But…I wasn’t going to give up. My family was terrified and discouraged me from getting pregnant, but after seeing drs and specialists, I decided I wasnt giving up. My 12 yr old was born in 2006 & I cant imagine life without him. After my dad died, I couldnt fathom how I would be able to care for a newborn, in the midst of my grief. But, I did. I had to. I didn’t have a choice. And now, I don’t know how I would have made it through that time without my son to take care of. Then came the POTS, with a newborn & 7 yr old (who was insanely jealous). How would I be a good mom, especially with the fatigue?? But…I am. Im an amazing mom, to two amazing kids. My kids keep me going. I never lay on the couch all day, even though there are certainly days I wish I could. I push myself for me….and for them. Im too stubborn to let chronic illness make me give up my many dreams. Im a fighter. Ive found strength I never knew I had. You can, too. My little one is extremely active (I see ADHD in his future…which is ok), and I HAVE to keep up with him. I plan playdates, go to every school function, DESPITE how bad I feel. Being a good mom, means doing things that are hard, for them. It also means I have to take care of myself, too. Anyway, I could go on and on. Im a fighter. I wont let POTS, Epilepsy, Endo, Depression etc, keep me from living my life. We only get one chance. Don’t take this the wrong way, but some people can get stuck in feeling sorry for themselves. You are only limited by yourself. POTS sucks. It really does. But you can do whatever you put your mind to. I wish you luck and urge you not to give up.
I can relate to this oh so much (my husband’s name is David as well!). I want a baby more than anything, but with all of my health concerns, I don’t know how I’d cope. We’ve tabled the discussion for now because we are moving, and my health isn’t stable right now anyways, but at some point we will have to decide. My family have said to me that I can adopt if I can go through a pregnancy, but I’d still have to raise the kid! I now won’t tolerate anyone talking to me about it because it’s upsetting, and I am sick of people pushing me.
Anyways… I know what all of this is like. Many hugs.
Oh lovely, I don’t quite know what to say. You have been so open and honest with this post and I can feel your pain, the yearning for a child yet the worry and concern over your health and the future and how the two go together. I would agree with comments above about not giving up hope yet; while you may not see how it could be done right now, that doesn’t mean that around the corner the distance starts to look a little different. A few years ago you wouldn’t imagine being where you are now. In a few years, you will probably say the same again, but hopefully with a happier, brighter outcome. The child issue is a difficult one for me because part of me shuts off from thinking about it, having the same thoughts as you about not being a good mum, if I could even get pregnant that is, and it is crushing to think about. You have been through so much, and you’re still fighting the good fight day in, day out. Take heart in how far you’ve come and what you’ve got through. The answer to your question isn’t an easy one but it doesn’t need to come yet, give it time. I’m sorry I can’t say or do anything to really help or make this any easier, but please know I’m thinking of you ♥
Caz xx
I think there is a certain degree of mama strength you can rely on. My baby is two months old and I’m willing to go above and beyond for him to the point my strength has surprised me. But there are days where my fingers are too swollen to do his bottles and I need help. Physical limitations are no joke. I’ve also heard from other moms that kids are often really kind and understanding of their parents limitations. Just some food for thought. 🙂
That is such a difficult decision. You are right to think about those things. I think you would only be able to manage the needs of a baby and toddler if you had a lot of support in place, for instance if you had some family members who could stay with you or a nanny to help out during the week. Or possibly a night nanny to so you could get some rest and then you could cope better during the day.
Nobody can decide this but you. I still beat myself up sometimes after 28 years of motherhood. I knew I had a lot of symptoms all my life, but nobody gave any diagnoses until after I had kids and was so fatigued that most of the time they were little I spent on the sofa while they played and watched TV. We were often stationed a long way from family, and it was difficult for me to find friends that could occasionally help, but we managed. Sometimes my presents for special occasions were that my husband would hire a reasonably priced maid. When the kids got big enough to go to school, they usually came home to find me napping in bed. I missed most of their school and extracurricular events. Some of my family’s health problems got passed down to them. Once when they were home for Christmas, I broke down crying that I was so sorry I hadn’t been able to be an active mom for them like their friends had; they told me they loved me and were grateful I was always there for them whenever they really needed me. They aren’t thrilled with some of the genetic chronic conditions, but they have life which they usually love and they know it was because I made the effort to have them and raise them the best I was able. I don’t know what I would have decided if I’d had more information about my health 30 years ago. Prayers and gentle hugs 💚
Thank you, Shana! It sounds like despite all your challenges, you’ve been a great mom. I think one thing that writing this article helped me realize, through the advice of parents such as yourself, is that what matters most to kids is that you love them. And you clearly love your kids! 😊 I’m worried about passing down some of my conditions, such as celiac disease, endometriosis, and EDS, but at least as time goes on, those conditions are becoming more manageable. Hugs to you too! 💛