Life in the land of special needs. On duty 24/7. Feeding, toileting, bathing, shaving, entertaining, guiding, nurturing. Guilt that I am not doing enough. Irritability that there is not a moment of peace. Cross that I have to do this for the rest of my life. Love is: when he requests a family hug. Joy over every little bit of progress. Amusement when he happy dances to pop music. Delight because he can say 'oh shit'. Thick skin from dealing with stares and rude people. Sadness.... comes with the territory. The awareness that 'small stuff' is not important. Understanding that it is always possible to make a plan (if you want to!). Relief that we can leave him with trusted people... and take some time out. Happiness because we can now take him on adventures. Our life is different than most, yet similar to many others who walk the same path. Such is life!
