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Going Home

November 11, 2011

Okay. The story is about a little wave, bobbing along in the ocean, having a grand old time. He’s enjoying the wind and the fresh air-until he notices the other waves in front of him, crashing against the shore. “My God, this is terrible,” the wave says. “Look what’s going to happen to me!”

Then along comes another wave. It sees the first wave, looking grim, and it says to him, “Why do you look so sad?”

The first wave says, “You don’t understand! We’re all going to crash! All of us waves are going to be nothing! Isn’t it terrible?”

The second wave says, “No, you don’t understand. You’re not a wave, you’re part of the ocean.”

From

    Tuesdays with Morrie

      By Mitch Albom

Yesterday was a long, long day. My morning started around 5, reading a facebook message from my sister. My grandmother, who has been in declining health for the last 6 years, is not doing well. She lives 600 miles away from us. Our little family has made the decision to live where we do in large part because of the services available to our children. This, of course comes at a cost. All of our extended family (grandparents, aunts, etc) live 600 miles away. It can be lonely, and at times like this, it makes me feel so helpless. Those who know me know that I am quite the control freak. To be this far away really puts me out of my element. So while I have all these thoughts of my grandmother spinning around in my head, I have to remind myself, that I have to be on my game today. Too much is going on. I had an ITSP meeting for my son today. This is very similar to an IEP meeting, where I have to be very careful how I phrase my son’s progress and regression, so that the insurance company will approve the therapies prescribed for him. Not only that, but since my husband (did I mention he’s a pilot?) was on a trip, I had all three of my children with me. So there I was, holding it together, waiting for potential phone calls from home, fighting for my child. I think it went well, but we’ll see if we get the official approval. From there we raced over to the School for the Deaf, where we have a playgroup that focuses on ASL. From there a quick lunch in the car, while trying desperately to get updates on my grandmother over the phone, while we drive over to the other school for speech and hearing, where they try to teach My youngest nonverbal deaf autistic child to speak. Yes, we are trying any and every form of communication with this little one. . From there we pick up my son at school, come home for a bit and head off to social skills group. Between all this, making phone calls to my parents, the hospital chaplain, and my in-laws, trying to figure out travel plans, rearranging therapy schedules and dealing with multiple meltdowns among my children. Exhausting doesn’t even begin to describe today.

How do you explain the end of life to a child with autism? In our house, you just don’t define it that way. We explain it as going home to God. It is just another journey that we all make. My children seem to undstand it that way. They know that they will miss Grammy, but that she is going to a wonderful place, when she does eventually go. This is, of course, another difficulty of living so far away. I really have no clear way of knowing how sick she is.

For as long as my children remember, Grammy hasn’t really lived in reality. She is often confused, talking to people who aren’t there and telling my son about the car she just bought (she hasn’t driven in almost 7 years.) But they seem to treasure those kinds of conversations the most. These confused, imaginative conversations that they have with her amaze me. Maybe it’s because they are children. Maybe it’s even because they have autism. They have the unique ability to meet her exactly where she is, whether that is in reality or in fantasy. My son went on and on with her about cars the last time she talked about that new blue car she just bought. He knew she was confused, but he’s so used to his one-sided perseverative conversations about cars, he easily ignored the inconsistencies in her side of the conversation. It was really beautiful to watch.

So today we will start the long drive home to my parents’ house in Massachusetts. It’s a 12-hour trek with DVD players, Nintendo, diaper changes, and potty breaks. The whole way there I’m sure my thoughts will drift back and forth between the generations of my family. My children and their great-grandmother. All of them working so hard, fighting so hard to be right where they are in this life. So we will start our journey tonight, to visit with my grandmother, as she nears the completion of hers. In one way or another we are all going home.

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