I don’t even know where to start with this…

…so I suppose I might as well start where it all started.

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“When those thoughts won’t come, I know that the shakes will. I’ve got no gun to my weary head. Hell, I couldn’t even hold the barrel still. Everybody loves a catch twenty-two. Damned if you don’t, son, damned if you do. Outside it’s another day that I got to make it through.”

— Jason Boland

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Not sure I said anything about it here before…but Sabra’s pregnant. She’s a little more than 18 weeks along. We went to her midwife’s appointment Wednesday to have an ultrasound done. She had gone for another ultrasound about three weeks ago, and everything was fine. We were thinking everything was gonna be fine this time too. We were gonna have the ultrasound done and bring home a DVD with pictures and/or video, we were gonna share it with everyone, and it was gonna be great.

We were wrong. We were so, so horribly wrong.

They did the ultrasound…but they had to call another ultrasound tech in because of some abnormalities they saw. And we got an appointment with a fetal medicine specialist for last Thursday to confirm what they suspected at the midwife’s office. And it was. Our baby has a very rare condition called limb-body wall complex. (Limb-body stalk the doctor called it.) It occurs in 0.7 of every 10,000 births. Completely random, not a chromosomal defect, no known cause or prevention. The baby has no pelvis or diaphragm, one of his/her legs is missing, s/he has a severe case of scoliosis, and the baby’s heart and intestine are outside the body. They are attached directly to the placenta, and there is only a nominal (2cm) umbilical cord. The heart and lungs aren’t going to develop like they should. I knew it was very bad when Sabra asked if they could tell us the gender. We’ve always been adamant that such remain unknown until the baby is born.

The condition…this limb-body stalk…the condition our baby has is fatal. There’s nothing that can be done about it. We’re going to take the pregnancy to term and hopefully be able to hold our baby and say goodbye; the baby won’t live long if s/he makes it out alive at all. We have chosen a gender-neutral name due to the inability to tell our baby’s gender. Our baby’s name is Psalm-Angel Guadalupe.

I am holding up the best I can, and I am finding my shelter and comfort in my precious family’s embrace, but right now I am just absolutely destroyed. I have dealt with death before, but never has it been so up-close and personal as it’s going to be in the all-too-near future. It’s one thing to deal with the death of a beloved relative who lived a somewhat long life, but quite another thing to deal with the death of your unborn child, and I’d be lying if I told you I wasn’t utterly horrified at the prospect. This too shall pass, of course, but I know that this is a wound that will never heal and that none of us will ever be the same. I have so, so many questions, most of which I won’t find out the answers to in this life, but that I’ll probably be asking until Sabra and I see our precious little baby again in that land where there is no more death, no more sorrow, crying or pain.

Please keep us all in your thoughts and prayers.

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“Love is everything. It’s a rose on a stone, it’s the words in a song that the choir sings. It’s the tears of goodbye and the place that you fly to, to get your wings.”

— George Strait

Tags: personal