Saturday, December 6, 2003

Day 17

I feel raw, overexposed. My outsides feel as raw as my insides and I don't know how to stop it.

Day 17 of Hunter's stay at Hawthorn. Day 17 of 92 -- more or less. No one knows.

Hunter's first "ride" pass -- from 4 - 8 PM.

Matthew and Connor joined us for the visit.

The first 90 minutes of the visit were shaky and "familiar" to me. Henry, Matthew and Connor visited a sports store while Hunter and I went to Bed, Bath and Beyond. Hunter was anxious and agitated when we entered the store and escalated to agitation and frustration quickly. At one point Hunter dropped to the floor and refused to get up. I asked for a ten-to-collect -- which he also refused. His voice and body movements showed him to be on the way to a full meltdown. His voice was louder, higher pitched and on the verge of screeching. His arms were flailing his feet in tantrum mode. The entire incident lasted about ten minutes and we moved on to the next store (Barnes and Noble). At B&N Hunter still seemed anxious and agitated but more interested in the contents of the store. We poked around craft kits and the children's section -- but he was totally attention deficit.

He seemed so interested in his surroundings that he could not focus on just one thing. Several times he wandered off to other areas -- but never far enough that I was concerned because I was able to quickly spot him. He seemed to just meander around -- and I think he was overstimulated. The store was semi-busy, not chaotic -- and that could have contributed to another floor-sit and ten-to-collect.

After purchasing a book for him we left the store, reconnected with Henry and the boys and drove to the movie theatre.

We chose "Brother Bear" and everyone enjoyed it. Hunter even produced a few belly laughs. During the movie he ate a pretzel and drank an Icee. He was quite squirmy during the entire movie and I escorted him to the bathroom (because he needed to use it).

After returning from the bathroom he continued to squirm and reposition. I had created a nest of coats next to me so he could lean against me -- which he did several times. It appeared no position he chose was comfortable for him and I tried to analyze why.

We did have a few moments where he snuggled right up to me and held my hand.

When the movie was over we still had about an hour before returning Hunter to Hawthorn. We decided to stop at Best Buy. When we were near the entrance to the store, Hunter threw up all over the sidewalk. (No fever.) Although he said he felt better, he seemed (to me) to become quite lethargic. Hunter and his brother's played video games in the store and Hunter eventually lay down on the floor to rest. I rounded everybody up and we headed back to Hawthorn.

When I checked him back in I spoke with Nurse Sue and briefly explained the behaviors and throwing up. She said a virus was making its way through the center and that she would monitor him closely through the next 24-hours.

I want to say that the pass went well, but I have to take into account his inability to control himself (agitation showed loud and clear) and lack of focus.

I saw most of the behaviors on the pass that I've seen before admission to Hawthorn. I didn't have pie-in-the-sky expectations that he would be completely different. I was just hoping I wouldn't see so much drama (that we're more than used to) in his inability to cope and pull himself together faster because I was there supporting and coaching him.

High points: cuddling, kissing and interacting outside of Hawthorn. It felt more "normal" and real -- less therapeutic/hospital-like.

Low points: his anxiety, agitation and inability to redirect his frustration constructively (verbally: "this is what's wrong"). His mini-meltdown also distressed me because it was too familiar.

Next steps: continue visitation, support and communication with Hunter; look forward to the next pass by taking one day at a time.

I think I feel raw because I took quite a bit of time talking to Matthew and Connor about Hunter, the shift in where Henry and my focus would be -- back on them. I was completely honest and admitted we were aware our attention to them always came second. I also told them we didn't "blame" Hunter because he had no control over his brain. Neither of them comprehended the seriousness of Hunter's condition so I laid it out in black and white. It is imperative we surround and support Hunter in his treatment now because if we didn't -- or didn't continue to -- one of two things would happen: he would kill somebody or kill himself. That statement got their attention -- because they finally "got it". They knew I was serious and telling them the truth. I told them that they have a brother with a disability -- he was mentally ill. Connor "thought he was just bipolar" and I told him it was the same thing.

There seems to be so many things happening all at once. Although the chaos of Hunter and his constant needs, troubles and behaviors has been temporarily removed -- other things have begun to fill that emptiness.

Matthew's grandfather is at the end of his life. That makes me sad because he and his wife Ginny were always good to me.

The divide between Henry and me doesn't seem to be closing very quickly.

We have been focusing all of our energy on Hunter that we don't know what to do with each other.

We've been through so much together -- besides Hunter -- and I truly believe our relationship is strong enough to bring us back together.

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