That label is reserved for sick kids-- severely sick kids. My kid isn't sick. He's not. He's... not. Right?
That was me, from the minute my son was born, and we knew he was different. My husband could see his right arm, and his smaller, out-of-proportion-from-the-rest-of-his-body, sweet hand flailing about as the nurses cleaned him up after my c-section.
He whispered, "There's something wrong with his hand," and leaned his forehead against mine as I lay on the operating table, slipping in and out of consciousness from the extra dose of anti-anxiety meds I suspect the anesthesiologist pushed through my epidural just then.
Those few days in the hospital were a daze. It didn't feel like we had just welcomed a precious new addition to our family. It felt wrong, off... like a dark cloud hovered over us in the recovery room. The nurses could feel it; they could sense the shock we were still in.
Once we took him home, though, it seemed to get better. To have him occupy the spaces we had been anticipating seeing him in for so long-- in the swing, on the changing table, in his crib with the carefully selected bedding-- it changed our perspective, slightly. The shock still hung in the air, but it was wearing off. The hand would be dealt with, but in the meantime, he was still our precious newborn, and that giddy, new parent feeling began to emerge.
Twelve days after he was born, right as he was starting to get a routine down, we noticed how fast he was breathing... nearly three times that of a normal newborn. We rushed him to the ER, and from there he was flown to a children's hospital two hours away.
It was then that they began taking inventory of all the things wrong with our baby we didn't know he had.- One non-functioning cystic kidney.
- Two heart murmurs, one of which was quite large and disturbing.
- His small hand.
- A large inguinal hernia.
- An immature 7th nerve, resulting in paralysis of his left eye and eyebrow.
- A partially-collapsing airway.
- Aspirating his foods, which required the installment of a G-button.
All of these anomalies together, according to the geneticist, gave him a diagnosis of VACTERL Association. It is not a chromosomal or genetic abnormality, rather just a name for an observation of body system malfunctions that are often seen together. At this time in the research, it's thought to be due to environmental factors, or lack of blood flow at a certain point of development. Thankfully, thankfully, it's not often associated with any mental deficits.
It was in the middle of discussing with a nurse about us needing a medical supply company for his g-button equipment that I realized... these are special needs. This is what a special needs conversation sounds like. This is his life, and our life, now.
Special needs is not derogatory. It doesn't mean he's defective, or wrong. It doesn't mean he'll be special needs forever... or maybe it does. It just means that right now, there are some things his body can't do on its own-- like, close his left eye, or swallow formula, and he needs extra help, from doctors, nurses, specialists, and his parents.
It's not about the label. It's about getting those extra things, whatever they may be, to help your child grow and thrive.
Jackson is a special needs baby. I embrace that now, and it doesn't scare me. And, my husband and I are special needs parents. New ones, nervous ones, but also determined.
However, above that label, Jackson is our baby; he's the final piece to our family. He, along with his sister, complete our lives.
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