this season is…

hard to watch, hard to hear, feel, see, repeat and repeat and repeat

todays chat to the doctor was hard. reset your expectations. reset your self care. accept his journey, reset your anxiety. reset reset reset. how when who, to let him live so agitated and so upset and so unpredictable, live while he survives, we are surviving to keep him surviving. no one is living really. we are hanging in there. we keep going. we try not to scream, cry and fear. this is not fair on anyone. this isn’t the usual blueprint and thats ok, but its not fair to watch see feel him suffer. the tics and the anger and the tears. it feels so wrong but we are doing all we can. we are so tired and our hearts break for him we want him to be happy and feel joy and feel calm. feel safe. why cant we find him his peace.

tonight my husband and i, we both cried, we yelled, we never yell at each other, but we are so tired. we feel so lost and alone. and we have not much left to give and keep going. its like a dark hole we keep being pulled into. the world keeps spinning but we cant keep up. we feel like no one notices, no one really is worried, they don’t know the hurt and pain of each day living in chaos and stress and isolation, we cant share it all, we cant give up all our feelings, we are so in love with our children but we are so sad we are failing them, we cant fix this, we feel more alone , the more we ask for help and its knocked back or too hard or costs too much or not how it fits, the more it hurts.