I thought of my grandmother, and my mother, and my great-aunt LaVerne, and all the women I’ve known and their white-knuckled strength in the face of the unspeakable, when I read this:
When
your daughter is nine months old, a neurosurgeon will say to you, “We
believe resecting the left side of her brain will help control the
seizures.”
The
seizures that she has all day, every day, dozens, hundreds; she was
born with a massively deformed brain, what did you expect?
You
think a minute, and you realize the doctor is saying they are going to
take out half your daughter’s brain, and throw it away, so much trash,
and you’re supposed to sign the consent form for this.
And
after the surgery, when the seizures come back, you will sit across the
table from the man who is now your ex-husband, the man you adored, but
life can kick the ass out of any romance, even yours, and you will
order a very large glass of tequila, and you will say, “What the hell
are we supposed to do now?”
And you hope the answer is going to be about slaying ten men and Satan, because you’re capable of that.Yes.Heroic
action? You are totally down with that. But the answer is, you are
going to go home and do the best you can to make a life out of what
you’ve been given.
You want to read the whole thing.
A.
that’s my uncle and his wife and their daughter, who is 19 i think now. but still a very heavy big baby. their marriage survived. but their lives revolve around alexa. it’s unimaginable to live thru the suffering these children suffer. not every baby is perfect.
but karl is a very good daddy.
Wow.
Reminds me of the first time I read Robert Rummel-Hudson’s “Schuyler’s Monster”.
I’ll be sending out some major r’fuah shleimah (healing and health) vibes to Jessica and her family August 10th, I know that. Thanks for sharing it.
Incredible. Thank you for sharing the link.
powerful. thank you for giving us the link.
Reading the bit you excerpted, my brain was pushing back. I didn’t want to finish it, much less click that link.
But you told me I had to and I did and I’m glad. Thank you.
Thanks, A.
My wife had twin boys at 26 weeks, both less than 2 pounds. One died on Christmas day (thanks God!) while the other spent 78 days in the NICU hanging by a thread at times, got an infection that a great doctor began treatment for on a hunch (and that probably would have killed him if he hadn’t), had the skin and flesh on his ankle burned down to the bone because a shitty nurse didn’t notice an infiltrate for several hours, and had eye surgery before he came home to correct the damage done by the oscillating vent that kept him breathing for the first few weeks.
He came home on an apnea monitor but that was it. No developmental issues now.
The lady you quote has it harder than me. I think burying my son was easier for me than having to permanently care for a daughter with all those problems is for her. Having a child die ravages you with grief, and it never goes away, and the wound is always fresh, it always bleeds, it never scabs or scars, but the terrible finality of it is still probably better than the psychological grind of having a child perpetually in distress. My heart goes out to her.
I didn’t think I would make it through that article. On Monday I attended a funeral for a 16 year old boy who struggled with an illness for much of his life. Couldn’t help but think of his parents, especially his mom, as I read it. Fortunately mom and dad are still together, although dad had to leave the state to find work.
Powerful story. What an amazingly strong woman–and great mom!
Thank you for sharing that. I’m married to a pediatric neurosurgeon, so I hear second-hand about the sort of experiences that woman and her daughter are going through. She put it so powerfully, and movingly. There will be a lot of prayers going their way.