This is especially true for raising a special needs child. After all, there are plenty of how-to books on raising kids, but what if your child has a learning disability? Stimulation or sensory issues? Physical disabilities? No two cases are the same, and even something more common, such as autism, cannot be addressed with a generalization.
Namine’s heart defect (double-inlet left-ventricle) is a well known defect. The three surgeries needed to amend it (I won’t say “fix,” because there is no fixing it) are just as well documented, but even that can vary. Namine herself provides the perfect example – her heart surgeon had to adjust the first surgery in order to suit Namine’s unique physiology.
But caudal regression is whole different story. Even the name for the defect is just a generalization – it basically means something went wrong on the tail end of the body. Treatment depends on the patient. Is there a partially formed sacrum or no sacrum at all? (Namine’s is partially formed.) What about the pelvis? Are the hips dislocated? (Yes.) Are kneecaps present? (No.) Can the patient move their legs? While Namine can move her legs, her hip movement is restricted, and her left knee hardly bends at all.
Each child is unique, and each child develops and progresses at his or her own pace. Not everything goes smoothly; Namine needed a trach, thus pushing back her vocal development. She can talk now, but still has trouble with plosive sounds. She was born with clubfeet, so she is only now, at two years old, learning to walk – and that would not be possible without the repair surgery, which has had its own complications.
But children are stronger than we know, and perhaps more than we give them credit for. Namine has proven this to us time and again, and still we forget. Today is another reminder, and another milestone: in therapy, Namine walked with a walker. And every day, she climbs and stands using anything she can reach that will support her. Chairs, the couch, boxes, you name it. Far from avoiding work, she strives for it and uses anything she can to strengthen her legs and feet.