The fatigue is setting in. For almost 8 weeks we have been referred to more Dr.s than most of my other children have seen in a lifetime. Afua is bravely enduring the appointments, she experiences life with such gentle and joyous spirit that is only a reflection of the way she has survived life thus far.
There are days when we just need to retreat and cocoon (adoption term for staying home to establish a "home base" and family unit for a newly adopted child). I highly recommend cocooning, even in small doses for all adopted children. Kofi and Joy were 6 and 3, but we did not go anywhere for the first few weeks, and then we ventured out slowly. It helped anchor them into our family and we really needed to get to know each other. Afua doesn't have words to tell us how she is doing, so getting to know her is even more crucial. This mean days hanging out on the floor, having her crawl all over me and exploring some of her toys.
I have felt that as more and more medical interventions and appointments come up, that I need to slow down and have a long term view of this. Each week, I look at my calendar and think "next week will be better" but for 8 weeks that has not been the case. Not that any one week is bad, but it's always filled with driving to our Children's Hospital, waiting in various offices, saying the same things over and over again to various medical professionals and then more referrals.
Parenting a child with special needs is a marathon. And in order to avoid burn out, I am quickly realizing we need days that are not medical in any way. I need to set aside all that is to come (surgeries, therapies, procedures, appointments) and simply see her as my little girl.