Stuff with Annie has been intense. Those of you on my prayer emails know that we’ve just dealt with a lot of diagnoses, therapies, appointments, and the like. This past month, we got the official cerebral palsy diagnosis, which was supposed to help get us more resources, but has thusfar only resulted in a new med that makes her vomit again and extra therapy sessions only offered an hour’s drive away, because we’re in the middle of nowhere. We’re pretty much living off of various Costco prepared meals that generous friends have brought us, and I’m walking around in a state of mental and physical exhaustion. Today while I was on the phone talking to the CCS nurse who is handling our Cerebral Palsy extra assistance, finding out it is actually all going to be not that helpful, after all, the Movement Disorders Clinic at Children’s Hospital LA called to cancel our appointment this month with their CP doctor who was going to hopefully agree with me that the CP meds she’s on are causing more harm than good. The doctor had a medical emergency and is out for two months. Rescheduling will happen this summer, if we’re lucky. Then my social walker walked in the door for her biweekly visit, and I almost cried at how this, coupled with the news yesterday that she no longer qualifies for speech therapy because her expressive language is all caught up (even though she still needs oral help) and Derek’s report that she had cried nonstop all her new occupational therapy session this morning, just has me worried and stressed and feeling inadequate. Alicia looked at me and said I’ve got this, Annie is thriving, and it’s going to be okay. I’m trying to believe her. I just sometimes want to curl up and cry.
But. When I look at this beautiful face, there is no doubt in my mind that all the stress, paperwork, driving, medical drama, birth family complications, and the like are all 100% worth it. And I’m going to keep doing it all, as long as it takes, because I am her Mommy, and I love her more than life itself.
That is the best picture yet of Annie!