As Shane continues to cope with the reality of being unemployed, the issue of primary consideration has been to find a way in which to cover little Nikolina's continuing routine medical needs (routine for her, that is, and well beyond routine for a child with normal health), as well as additional, necessary surgeries. Knowing that Supplemental Security Income, which Noelle and Doah receive as disabled adults, will, under some conditions, provide a monthly stipend for children and, more important, health coverage, I suggested to Shane that he check into that possibility.
So, Shane did an online search of the SSI program and qualifications for it. Based on his research, he decided that Nikolina was not qualified. Why? Because to qualify one has to have a permanent, ongoing disability.
Hm, let's see. She has spina bifida. Not a permanent, ongoing disability? No colon or rectum. Not a permanent, ongoing disability? An ostomy and a reconstructed bladder that gives no indication of ultimate continence. Not a permanent, ongoing disability? Legs that had to be moved with no guarantee that she will be able to walk. Not a permanent, ongoing disability? OEIS Complex, from which only she and one other child (in Pennsylvania) are known by local doctors to have survived. And I could go on, but clearly Shane did not.
Yes, little Nikolina has reached or exceeded all her developmental milestones and appears every bit as bright as her older brother. She has an extraordinarily pleasant personality and does not cry even when her blood is drawn. We figure she is so used to be poked and probed she considers it normal. She can cry, but she uses her tears to control her parents and grandparents: leave the room, she cries; return to the room at the sound of her cries, and she immediately becomes all smiles and excited, wanting to play. Little manipulator! Nothing wrong with that brain.
I understand Shane's response, though. Once you have lived with a child with birth defects, you think not about the defect but about general health: colds, viruses, illneses. From that perspective, Nikolina is very healthy. All her medical visits are follow-ups to her surgeries or about planned surgeries. She has not been sick even one day. That, in Shane's book (and in mine), makes her a healthy baby.
Shane's response reminded me of an episode when Noelle was three years old. We were at the hospital, waiting for an EEG following a grand mal seizure that Noelle had experienced the week before in connection with an intermittent VP shunt malfunction. Paraplegic and in need of surgery prior to being able to be fit with long-leg braces, Noelle traveled everywhere in a stroller. The nurse rolled her away in the stroller after getting a positive answer from me to her question, "Except for this seizure is she otherwise healthy?"
As she rounded the corner, the image of Noelle being asked to get out of the stroller or to stand up, neither of which she could do, dropped into my head. Oops! There was a missing piece of information here! I zoomed off after the nurse.
"Excuse me," I called to her. "Do you consider spina bifida unhealthy?" Of course, she did! I didn't.
What can I say? Like mother, like son!