Abodah and sweet six

It doesn't seem possible, as I tuck Scarlet into bed tonight, that she is now six years old. Birthdays are such bittersweet milestones with autism. In so many ways, I had expected to be much farther along, but in so many other ways, Scarlet has surprised us. I heard a father of an autistic daughter once state that at first when your child is diagnosed you try everything and throw everything in the world at the autism in the hopes that it will go away, then at some point you realize that it doesn't go away and this is what you are left with. Sometimes Scarlet's future seems like a large open window looking out onto the world, with each birthday the fingerprints on the window get more pronounced and numerous making the future seem more clouded by autism. A sort of familiarity numbs the edges of the diagnosis, but it never makes it an easy bedfellow. Even as I celebrate the major accomplishments Scarlet has made this year, praising God that he has given so much of her back to us, a part of me aches for the Scarlet I will never know.

As long as Scarlet has been vocalizing, she has been saying a word, "Abodah". We have affectionately termed that word "Scarlet language" in our home. Imagine my surprise in finding out that there is an actual Hebrew word pronounced "Abodah". This particular word came to be as a result of the temple building going on in Israel at the time of Solomon. It was a word penned to express the particular worship involved in building the temple. It involved the concept of work as worship. The Israelites wanted to say that their work on the temple was an act of worship and so coined the term "Abodah". When Paul called me from his doctorate studies to tell me that his professor had just mentioned the word "Abodah" in his lecture, I could feel all the blood in my body drop to my toes. Is it any coincidence that the most frequently pronounced "word" in Scarlet's vocabulary is a Hebrew word meaning our work is our worship? I felt at that moment a sort of sanction in all the knocking down the doors for help, hours of cooking specialized food, repeated lessons on a voice output device, and well, yes, toileting. This "work" is my worship and my privilege.

This morning I was scheduled to be on worship team. I love to just worship with the band and the church, sing out loudly with abandon and declare how amazing God is. I am always so excited to offer this worship up to God and consider it an honor when it is my turn to use my voice to praise. It has been so long since I have had a chance to be on worship team because of several factors all stringing together to make it several months since I have sung. Today after first service (our church has a 9:15 service and an 11:00 service) I was met with a very foul smelling Scarlet. She had an accident in her pull-ups that leaked all over her church clothes. She really stunk, I mean gagging kind of stink. I tried to clean her but the stink stuck and I had no other choice but to leave early and take her home to the tub missing the second service. I was sad to miss out on worship team yet again, but in the back of my head I heard "Abodah". Really every day is an act of worship and my Scarlet is a cathedral that I build as an act of worship. So even though this sixth year comes with a bit of an ache, it is bound up by the thought that this autism gives me a chance to worship God in a profound yet simple kind of way.

"Take your everyday, ordinary life - your sleeping, eating, going-to-work, and walking around life and place it before God as an offering" Romans 12:1-2 (The Message)