03-30-2011 Update

03-30-2011 Update

We went to see Tessa last night. It went very well.

Tessa was very calm and went about her business mostly oblivious to us, which was in its own way both reassuring and sad at the same time.

Julie had brought her some markers and notebooks. We took Tessa up to her room and she immediately started her routine, tearing the front and back covers off and then coloring methodically on each page. Sometimes when she does this she seems obsessed with it and will continue for literally hours but last night she seemed very content to do it for a while and then move on to watching videos on her PC. She just had a calm and unhurried attitude that is pretty rare for her.

We took her downstairs so she could take her evening medications. Tessa held and drank from a glass (!) with watered-down Diet Coke and took her medicine without fuss.

Then Julie took her to the bathroom and she went upstairs and crawled into bed. We kissed her goodnight and after talking to the house mother for a while, we went home.

Rewind: The 'moment' for me was after she took her medicine and walked back into the dining room. Julie was in the bathroom telling Tessa to "come in and go potty".

Tessa paused next to the door leading out to where she knew our truck was parked. She made a tiny little sound. My interpretation of her actions at that moment was 'Come on, can I go now? Can we be done with this? Let's get my stuff and end THIS, whatever it is. I want to go HOME to MY room and MY bed and MY life. THIS experiment, whatever it is, is NOT MY LIFE. I WANT MY LIFE BACK! WHY CAN'T I HAVE MY LIFE BACK? I'm tired of the watered down drinks and no YouTube and this strange house. You remember, Dad, how it was? My LIFE? Just a few days ago? What we all had together as a family, OUR THING? I want THE OLD WAY, I WANT MY LIFE BACK!'

Thank God she only paused for a second and then moved on to the bathroom where Julie was waiting.

When Austin was born I remember there was a process I went through that really hardened my heart. Initially when we learned that Austin had Down Syndrome there was a grieving process that we experienced. It's painful emotionally to consider that your child wouldn't grow up to drive a car, have children, be able to live independently, etc., like other kids.

The first realization of these facts is excruciatingly, even physically, painful. But the second time you contemplate the challenges your child faces, it becomes a tiny bit less painful, even if you don't realize it at the time. Each successive time you consider your child's future two things happen: it hurts a little less AND you steel yourself to the prospect.

Eventually you evolve to a point where you mostly just don't let your mind go there AT ALL. It's just too painful plus there's no upside to it, for you or your child. And that change hardens you. And while you can empathize with other peoples' similar experiences down the road, they don't affect you as profoundly, because you have already been THERE and it's changed you, forever.

Other people probably think you are cold or unfeeling but the fact is that you can't do anyone any good if you let yourself go THERE. Not that you don't sometimes let yourself slip into that mindset but you know that there's nothing to be accomplished by allowing yourself to wallow in the sense of loss, the anger, resentment, and bitterness.

So with Austin I trained myself not to go THERE and when Tessa fell victim to autism the lesson was reinforced.

The hardened heart is pure survival instinct. You cannot move forward without it.

I can sit around and wring my hands about Tessa's plight but what good does that do Tessa? And what good does it do me? Julie? Austin? None, none, none and none.

When Tessa paused last night, I really NEEDED that hardened heart because I must tell you, I really, really, really wanted to GET ALL HER SHIT and GET HER THE HELL OUT OF THERE. I wanted so badly to end the 'experiment' and take my little girl HOME, to her REAL HOME, where Julie, Austin, Tessa and I have OUR THING, our lives. That's all I could think of. But Thank God the moment passed. Because while my heart broke, my mind made my body do the right thing. Which was absolutely nothing.

Anyway, not to be Stevie Downer or anything, but those are the real, raw facts. I guess I could lie and say it wasn't like that for me, or just not mention that moment, but I feel there is some real value to me in acknowledging the emotions and moving on from there. And hopefully there's something to be gained by my sharing this with you.

The upside of the callous approach is that it (hopefully) lets you do the RIGHT THING instead of the thing that you WANT to do, which may be the WRONG THING. The callous approach potentially brings reason and sanity to your decisions as opposed to following your heart, which would often ultimately bring disaster. And the callous approach allows you to be POSITIVE about what POTENTIAL there is for your child, instead of the defeatist, fatalistic view that your heart projects on the situation, all the while it's breaking in half.

I have no doubt that there is a parallel thought process for parents of 'un-challenged' children, albeit on a different level.

I have to admit that at the time Tessa was hesitating, I heard a little voice in my head that said "WTF are we doing here?".

One day at a time, one foot in front of the other...

All in all, last night was positive, even if that one moment does still nag at me, and will forever.

More visits coming up and the target for her Bauer Court visit is 4/16.