04/05/2025                                                                            
                                    
                                                                            
                                            As a parent, this is me everyday                                        
                                    
                                                                        
                                        Our grief is never about WHO our children are, or the could have/should have beens.
Our grief is for their struggle.
It’s not about academics or delays.
It’s about knowing that the brain + body will always run into disconnects. That the heart and mind know, but the body just won’t always listen.
This grief isn’t about lack of verbal communication. It’s about yearning for our children to be heard, in whatever means that works best for them. {sometimes the JOY is connecting in all that is NOT said.}
The grief comes in waves… often without warning. 
While filling out unending paperwork, answering questions varying from “can your child use a fork” to “does he want to kill himself?”
No parent of a five-year-old should have to contemplate such things.
Or in line at a pharmacy, a tiny wish slips in that maybe, someday, your child won’t need those little orange bottles to be able to tolerate this world.
The moment your child is diagnosed, you begin the race against time {your own mortality} to support them in building the most independent and fulfilling life possible.
Grief isn’t in the acceptance that you will fight your whole time on this earth to make sure your child is loved, accepted, understood, and included. 
It’s about not knowing who will fight once you are gone.
Who will listen to everything that is not said?
This is where our grief lives.🖤