Just venting

I seem to have a hard time with new SMA parents, well not all of them, but some... They seem to think that life goes on as normal, but it dosent. SMA kids are so touchy and delicate, the slightest change in weather can set them off. Our kids require constant attention, be it be with breathing treatments, CPT, cough assist and suctioning, to neb treatments. Our kids also require physical attention, and allot of it. My day is 90% Skylar (and thats no joke) the house and other motherly things happen when Sky is sleeping and or napping. And you have to keep them going and doing, they dont move like a regular child, and you do 90% of the moving for them, be it be repositioning, playing games, reading, drawing, arts and crafts, you have t be there all the time. So I wish that doctors could teach these new parents how to care for an SMA child, but helping them to understand they are also children who sometimes get a cold bug, and that if your doing what you need to be doing your child does not have to go to the hospital every time they get a fever or a little something. Its not easy being the parent of a very special needs child, but its worth it every second of every day. Ok Im done now....