People keep asking me….how did you not know Goldie had anencephaly?
With a neuro tube defect that caused her skull and parts of her brain not to form, anencephaly is extremely easy to diagnose in early pregnancy during an ultrasound. In fact, I've only found one other woman (so far) who carried to term and had no idea there was a problem. When I was pregnant with my son Moses, we had a few unnecessary concerns through ultrasounds that brought with them mountains of fear we had to fight against. So this time around after praying about it, we chose the midwife/home birth route. The only ultrasound we had was at 18 weeks at a non-medical facility to simply find out the sex of the baby. They weren't looking for any medical problems—they were looking for gender.
And every day, I thank God that's all they found.
Because I was blissfully unaware of Goldie's condition, I was able to to enjoy every moment of my little girl growing inside of me, bonding with her, loving her–loving being her mommy for those glorious 9 months she had on this earth. There was no fear, no angst, no dread, no tears. I was able to go on being the best mother I could be for my son Moses, the best wife I could be for my Studhub, Lucas. I was able to travel the world speaking and ministering, coming home to write songs and be with family—doing everything I needed to do during pregnancy while enjoying every minute of our intimate mother/daughter relationship.
Knowing wouldn't have changed anything. We still would have prayed and blessed her spirit every night, believed for her wholeness, believed for a pain-free birth, and of course, I wouldn't have thought twice about carrying her to term. Most women are encouraged to abort, (in fact, statistics show that 90 percent of them do) given the information that anencephalic babies are blind, deaf, mute, and can feel no pain.
And I'd like to take a moment to say….what a load of absolute, total, pure garbage.
On many, many occasions while carrying Goldie, I had the opportunity to pray for people during times of ministry. And EVERY SINGLE TIME I would start praying, her little arms and legs kicked and banged as though she was attempting a jailbreak to get her hands on the person I was praying for! I'd just laugh watching her little limbs dancing under my skin, exclaiming “That's my Luca! My little healer!” And every time, she'd stop her movement the second I quit praying. If someone had their hand on my belly, she was going to kick. In fact, one night in a worship service, I finally had to ask my mother to take her hand off of the left side of my tummy where Goldie beat up against the exact point where her hand was–for a solid 10 minutes! If I was worshiping, she'd suddenly get active and kick along with the drums. If I would get up to use the loo in the night, she'd kick on my bladder. The girl was so aware, so present, so in tune.
Up until 5 years ago, anencephalic babies were referred to as ‘monsters' in medical textbooks until a midwife fought to see the term changed. And most insurance providers still won't even cover a woman who chooses to carry to term, reinforcing many women's decision to abort. In many states, carrying an anencephalic baby to term is illegal (that's right….I said illegal). I was mortified when talking to several girls who found out their babies had anencephaly early into pregnancy, and how doctors immediately shamed and chastised them for their decision to carry life and not abort or induce early. One friend had to stop her doctor from referring to her son Eaton as ‘it,' and informed him that she had a SON in her womb and he would refer to him as ‘he' or she was leaving.
Now hear me out. I'm not trying to get in a debate about birth preferences, medical practices, or that my decision to forego medical ultrasounds is the ‘right' decision to make. I'm saying…..it was right for me. I'm simply grateful that I didn't know of her condition. I thank God for it every, single day. I had a hard pregnancy, but it was still one of my greatest treasures—those 9 months and 40 minutes I got to spend with my baby girl on this earth.
Without the dread of death. Without the fear of pain. Without the anguish of loss.
When you lose a child, women who have lost children come out of the woodwork. Each story is equally as painful, but in some ways, you don't feel so alone tucked inside this sandpaper cocoon called grief. One of the mothers I met through a friend after Goldie passed is a beautiful songwriter named Alisa Turner. She found out, as most mothers do, that her little London was anencephalic during her first medical ultrasound and wouldn't survive. And her beautiful song ‘Dear Death' has, on many occasions, brought me quickly to tears.
It's excruciating to watch her sing to death while carrying her son as he still lives in her womb—knowing that he won't survive. But even in the agony, this beautiful song from a mother to the death that will soon take her son—-it's a glimpse into the hope of eternity.