At 3:30 AM on April 3rd, I woke up with mild contractions. I was a week over my due date and thrilled to be finally in labor. A quick 3.5 hours later, I pushed my 3rd darling son into this world.
By 10AM, I was happily snuggling my newborn and chatting with my husband and parents, contemplating trying to convince the midwife to release us early from the hospital.
By 2PM, a neurosurgery resident and a pediatrician walked in a change my world forever...
Not really my world, but my son's. (Let's call him Aramis.) He was born vigorous and alert and healthy. And with a large puffy spot just above his butt - a kind of 3rd butt cheek. The pediatrician assured me it was probably just a big bruise or fluid bubble - but he'd send us down for a quick ultrasound to make sure. A 'quick ultrasound'. On a Saturday. I should have been clued in. I definitely began to worry when the quick ultrasound turned into a long ultrasound that snaked up to his neck. My dad had gone down with Aramis and I and we locked eyes for a minute - he was in a position to see the screen, and I knew it was not good. But my experience, "not good" was temporary. Either surgery or meds would fix whatever was wrong and Aramis would be fine.
I wasn't ready for the diagnosis, the lifetime sentence. I wasn't ready for the words: catheterize, impaired mobility, multiple surgeries, followup team... I wasn't ready for the long word that meant Aramis' third butt cheek was made up of his spinal cord and fatty tissue, covered by skin. A rare form of spina bifida called lipomeylomeningocele.
It has been a month and the shock is slowly wearing off. I have shed many, many tears. Grieving for the boyhood that his brothers are experiencing, that Aramis may not. But that is a different post...
My maternity leave has been spent worrying for the future of my boy - this is the first time that anyone in my immediate family has need of the social safety net (excluding Social Security/Medicare) and it is a very vulnerable feeling. He will be needing surgery in the fall, and a lifetime of doctor's care. He should walk, but will probably need crutches and braces and physical therapy.
I am relieved that HCR has eliminated pre-existing conditions. He is born with a helluva pre-existing condition, a costly one. And the ability to extend coverage until early adulthood eases my mind. The disabled are under-employed and I can cover him until he gets a job with benefits (providing they still exist.) This is no small comfort... Thanks to all the Kossacks that worked to make HCR happen.
But what about school? With all the budget cuts (Michigan is really hurting ) will there even be PT (physical therapy) and OT (occupational therapy) for him?
The scary part is that it all can disappear on a political whim.
For the first time, the personal is very political for me. Politics isn't an exercise in outrage and a spectator sport. As I rock and cuddle him, I am promising myself to be more active for progressive causes. His quality of life depends on it. If it was just will and work that would determine his outcome, I'd have no doubt - he comes with fierce parents.