It doesn't get easier. I think a few years ago, I was sure that time would heal, that progress was a certainty, and that, without a doubt, this would get easier. But is hasn't, and I am pretty confident that it won't. That's not to say I'm not up for the challenge, but it isn't any easier. None of it is. Most days we plug along just fine. Every day except Sunday is chalk full of therapy, school, doctor visits and so on, and we roll with the punches as they come. Every now and then we get a healthy dose of perspective, and are reminded that even amidst our many struggles, we have an AMAZING support system, and countless things for which to be grateful. Avery's "progress" or lack there of, has not been one of them. I feel so foolish looking back. After all, I have worked with over a hundred kids with Autism... so I thought I "knew" the path. Boy was I wrong. Avery is "special" in more ways than one, so she is truly unique, and is on her own journey. Some days I feel like she was really handed a raw deal, and the guilt overcomes me and the memories of her as a healthy, typical baby are to painful to even think about. Other days are full of joy, giggles and smiles... helping to remind me that "progress" is overrated and to be thankful for what today brings.
I just returned from Avery's 6 year old "WELL" visit. Though in every way her body and mind are far from "well." Questions like "can she feed herself?" "Is she potty trained?" "Can she say any words?" "Can she run or jump yet?" All of which I have to quietly answer "no" and explain that it is not for a lack of trying. Despite thousands of dollars each month of therapy, special diets, a variety of protocols, biomedical intervention, medications, supplements, prayer, and wishes... another year has passed and according to her chart, "minimal to no progress has been made in most areas." We were urged (just like last year) to go BACK to the neurologist, oncologist, dermatologist, allergists to seek more tests for which have yielded no definitive answers in the past, more scans, more specialists, more opinions, more hope, then more heartache as NO ONE seems to have a clue as to why Avery seems to keep regressing developmentally, and biologically as her Masto symptoms year by year only get worse and worse. I hate to sound overly despondent, but I can't begin to describe how gut wrenching it is to not be able to help your suffering child. Every now and then, it is just too much. And it is NOT any easier.
So what is the take away? What lesson have I learned from the bucket of tears I have shed today? On a day when so many negatives were pointed out to me, what is there to celebrate? Avery. My sweet, unknowing, simple yet so complex little girl is SIX years old. She is someone to celebrate. Without her I would be so boring. My life would be so "normal." My heart may be a little less wounded, but no where near as strong. She gives me courage, purpose, strength, wisdom, heartache, joy, hope and Grace all wrapped up into a little person who can't speak a word or follow a simple direction. Avery Grace is someone to celebrate, despite her medical mysteries and uncertain future... today and always she is my precious, perfect, first-born daughter who deserves every penny we spend and every sleepless night we survive.
THIS is not easier. But WE are ALL BETTER because of her. Celebrate that.