Gary and I were now empty-nesters! After all the fiascos of finally getting Jeffrey settled into his dorm room at ERAU in Arizona (Is the Ride Over Yet?), we were finally back home in Oregon. And having the freedom to just go and do whatever we wanted whenever we wanted was very strange – yet exciting at the same time!
But when we still hadn’t heard anything from Jeffrey for close to 2 weeks we were starting to get a little worried. Then our fears came true when we started getting emails from the nursing company stating our sweet boy wasn’t living up to the arrangements we’d made.
The schedule for the nursing company was to be at Jeffrey’s dorm room 6:30-8:30 PM each evening to get him ready for bed, and prepared for the next day. That, unfortunately, was the latest they felt comfortable scheduling it, as they didn’t want their staff wandering around a college campus late at night. However, they did state that if Jeffrey had something he wanted to attend late one evening, he could call them in advance and they would try and work something out.
Jeffrey was totally okay with that arrangement – at least to everyone’s face. However, the nursing director told us he had been coming back to his dorm room later and later every evening – without informing them. Not good.
In a strange way, I understood where Jeffrey was coming from. He’d always had adults around him organizing his schedule, and now he could suddenly come and go whenever he chose to do so. What teenager doesn’t want that freedom?
Yet Jeffrey wasn’t a normal teenager – at least his body wasn’t.
The nursing director had talked to him repeatedly about the importance of staying on schedule – often the nurses would be sitting in his dorm room wondering where he was, and if, indeed, he was okay.
Jeffrey’s body may not work like a typical body, but his mind is very much like yours and mine. Every time we talked to him he said he was sorry, and that he’d try and do better. Gary and I warned him that if the nursing company decided they couldn’t care for him any longer – and disability had yet to come through – we would have no choice but to bring him back home.
Everything would be fine for a day or two, but then Jeffrey would go back to his old behavior.
One day the nursing director sent us a copy of an email Jeffrey had just sent them, stating that he was canceling their services at night, because he had a college friend who was now going to be taking over the evening care.
Whoa, whoa, WHOA!!!
Gary and I were starting to panic. If you recall from my post Truckin’ Forward, we had decided not to become Jeffrey’s legal guardians because our attorney had stated he felt the court probably would not grant us guardianship. So the bottom line was that Jeffrey did have the authority to cancel the services if he so chose.
After a few days of frantic phone calls with everyone we could possibly think of in Arizona, we finally got Jeffrey to agree to try using his friend just a couple days a week – and to use the nursing company the other days. We did feel bad for Jeffrey, because he told us how embarrassing it was to always have to be back in his dorm at a certain time. He felt like he still had parents keeping track of his every move.
So the trial run started, and evidently Jeffrey’s friend did help him to bed – a couple of times. But then one morning the caregiver arrived at 6:30 AM and found Jeffrey sitting in his wheelchair in a corner of his room, soaking wet. He’d been there all night. His friend had never come to help him, and Jeffrey had been too embarrassed to call the nurses – or try and get his roommates to help.
The nursing caregivers were all getting frustrated with Jeffrey, and we were really wondering how much longer they would continue to care for him. They finally gave us a deadline of when they would terminate services. I made phone call after phone call to Jeffrey’s DDD caseworker to find out if the disability payments might be approved soon so that they could take over his care.
Isaiah 40:30-31 is one of my favorite passages, and I found myself clinging to that – especially when I found out Jeffrey was no longer attending church, and wasn’t getting involved with any of the Christian groups on campus:
Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Lord, hold Jeffrey close to You. Please keep him uplifted by Your right hand.
Nope, I’ve never tried bungee-jumping as roller-coasters are quite enough for me to handle. However during that time, I was starting to feel like I was falling off a very high bridge and wasn’t sure my life-line was around me tight enough to bring me back up.