A garden stone my mother had made for us

Parenting is easy and filled with constant, never-ending joy, said no one ever. The decisions are hard, the nights are sleepless and the heartbreak can be debilitating. But the love is real and worth all of it, otherwise, I’m not entirely sure why we would keep procreating. On that note, happy Mother’s Day! I remember the days of making bright, paper flower bouquets and awkward, silhouette drawings for my mom and being thrilled to honor her. Then, at some point as I got older, Mother’s Day got emotionally complicated. Of course we love a day to celebrate our mothers and for those of us that are mothers, to be celebrated. But the day can’t go by without thinking of friends who have lost their mothers, or who have lost children, or pregnancies, or who wanted to be mothers but it wasn’t meant to be.

Fair warning, this was a challenging post to write and may be a tough one to read. I ask that you please read in full and with an open mind. It’s been nearly five years since we found out at our 20-week ultrasound that our pregnancy between Jackson and Adelaide was not ok. We were referred to a high risk ob-gyn for a second opinion and a second grueling ultrasound. I lay on the table trying to hold in my fear soaked sobs so the technician could get the pictures the doctor required. Not long after the technician left the room the doctor came in and explained that my baby had a condition called thanataphoric dysplasia, in Greek this means “death bearing”. Anatomically speaking, his rib cage was too small and his lungs severely underdeveloped among a slew of other issues. The doctor explained there was no grey area here, it was one of the most black and white cases of a fatal fetal anomaly that she had ever seen. As long as he was inside me he would probably survive, but death was nearly guaranteed during childbirth if not shortly after. The thought of carrying my son, that I wanted more than anything, to term so that he could suffocate at birth was debilitating. Miguel and I made an impossible decision to terminate the pregnancy and protect our son from a painful death. **While we’re here, The AMA and the Royal College of Obstetricians and Gynecologists state that the earliest a fetus can feel pain is 30 weeks. The point of this post is not to debate this point and I will ask that you not use my forums to debate it either, thank you, byeeeee**

Prior to this nightmare beginning, Miguel and I had been having a hard time deciding on a name for our second son. My father, wanting to refer to him as something other than “the baby”, began calling him Elvis, and it stuck. I love all three of my children more than I have words to say and try my hardest to make the best decisions for each of them. I’ve never tried to hide Elvis from our life story and, prior to Adelaide’s birth, had written publicly about our experience. But once we realized Adelaide’s medically complex condition I grew hesitant to share further, for two reasons: 1) I didn’t want our decision to change anyone’s mind about donating to a non-profit with which we aligned and 2) I knew people would wonder if we would have terminated our pregnancy with Adelaide if we had known. Since then I have decided that anyone who would refrain from donating to an organization, whose mission is to cure lives, because of an excruciating choice we made, has their priorities wrong anyway. And regarding Adelaide, I honestly have no idea what we would have done, but questioning the answer is not a valuable use of my time when I can be fighting for the life she has and enjoying every moment we have with her.

For several months following the loss of Elvis, I was horribly depressed and at times inconsolable but never have I regretted our decision. I did, however, become aware of the laws in other states prohibiting women from making the same decision we did because they were considered “late term”. I listened as the President of the United States spoke at the State of the Union and incorrectly claimed that doctors were ripping full-term babies out of the womb moments before birth. Then I read this week about the state of Georgia signing a “heartbeat bill” into law which will prohibit women from receiving an abortion after as early as six weeks. Every time these abortion rights are attacked I am thrust back into that ultrasound room, tears streaming down my face.

Disclaimer time: By no means am I advocating for the termination of special needs pregnancies. Far from it. My son was not going to survive birth - no amount of prayer or medical intervention could change his genetics. That said, knowing first hand what went into making our excruciating and very personal decision, I don’t know how anyone could ever presume to make that decision for anyone else under any circumstance. Now for a moment, let me juxtapose (yes, I just used the word juxtapose and am damn proud of it), a question we’ve been asked when entering the hospital with Adelaide: should she stop breathing would we like her to be resuscitated or will we be signing a DNR. Every time the question is asked it feels like a punch in the gut but considering Adelaide’s fragile condition, and that she has been resuscitated more times than I can recall, it is an understandable one. We fight day and night for Adelaide’s life because she shows me that she still has fight left in her. But I know someday she will show me that she is tired and we will be faced with another impossible decision to sign the DNR. The difference here is that no one will try and stop me. There are no politicians telling me how I should make these medical decisions for my daughter and if we decide to not resuscitate her one awful day, thus ending her life, no one will look at me or her doctors as criminals.

On this Mother’s day, instead of just giving the lip service of an over-priced greeting card, let’s acknowledge the mothers in our society as the strong, intelligent and compassionate humans they are. If the government deems me responsible enough to make life and death medical decisions for my severely disabled child living outside my womb then I should also be able to make the same medical decisions for my child that I carry inside my womb. Period.