Looking back, it is remarkable to me how resilient we parents can be. There is no way I will be able to deal with this and stay sane. But somehow, we manage. We need to manage for our children. As parents quickly become educated about the medical complications associated with SMA, we naturally speak with other parents who seem to know a lot more than we do.
Many parents have very sensible and practical suggestions.
Other parents are cynical, or even angry, at the medical establishment because of the lack of knowledge about SMA or the treatment their child has received. Yes, we do become experts about our own child, but no two children are exactly alike. What works for one child may not be appropriate for another child. Doctors may not know everything, that s true, but it s also important to remember that parents, although experienced and knowledgeable, are not doctors. Because SMA is a relatively rare medical condition, most doctors have seen relatively few SMA-affected patients.