First chance is too long for an update.

July:  Fuck me. We hired M on the 18th. Did not show up over 50% of the scheduled time in July. I covered. Little accomplished in the house, some outside plus managed a very small potted garden. New care takers own health, auto and  offspring all interfered with the ability to be reliable. Continued requests for extra hours were met with  strenuous emphasis on reliability. Time will tell as no others have surfaced.

Also the van. Fucking van.  Mother fucking fucked up van… fucker.

Most of July it was at one dealer (wheelchair conversion) and through the first week of August  at the other (Chrysler).  His PT ended in mid July waiting for insurance approval. Not a bad thing since  all transportation was by manual chair in the car. It is hot outside and the air is shit from the fires in Yosemite and surrounding areas. Going to town sucks, so he remains at home is physical discomfort.

So we made it even better to get around by losing one foot of his manual chair. I am pretty sure we left it on the curb at his Physical Doctor’s office. We checked but never found it there.

Regardless, transporting with one manual foot would not be easy.  I called the chair dealer and manufacturer trying to find a replacement.  It should not have been so hard. Ordering replacement pieces (in pairs) would cost more than the fucking chair.  The dealer never returned my calls. The spacing between pins and where the locking bracket was is very specific. Specifications were not always listed in measurements, instead more general terms of “universal”. After 2 weeks of searching I took a chance and ordered a pair. It was $36 so I was expecting them to fail. When they arrived in early August they worked. By then we had finally gotten the van taken care of. But we have 2 feet for his manual chair again.

The parts for the van suspension took 6 weeks. The van was due for registration in mid July while still at the conversion dealer. So at the Chrysler dealer we planned to have it smogged, after the DMV fees were due (of coarse!).  The dealer told us there was a tag missing from the gas tank that cleared it for California emissions. Ended up taking it to a specialty center at a very specific time way the fuck in the middle of nowhere. Sat at a table sheltered from the sun and waited for them to do the inspection. The technician was miffed at the dealer claiming they should have been able to cross reference some shit only they care about and pass it.

He was cool enough to put some official sticker in the door assuring us we would not have to do this again. I would like to think that is true. But then again, it is the CA DMV.

Through July he endured pain and over medicated stupors. When the meds released him he worked so hard at his therapy. His therapist challenges him every session.  It was hard for him to go most of July without his sessions. The insurance requested additional information from his therapist so he went a month before being approved for more.

Fortunately, we were able to do many exercises and therapy at home. He used the rik shaw for his triceps as well as the exercises prescribed by the therapist. A, D and I all knew the routine. He did the stander as much as he could tolerate. He never stopped trying. As difficult as it is to watch my child suffer and struggle every day I am so very proud of his resilience and tenacity. My little man is so strong and adaptable.

Early August we finally met with the pain specialist. Colin is ready to look into the spinal pump. We learned a lot. The pump is a heavy metal flat cylinder weighing about 2.5 lbs. It gets inserted under his ribcage internally. An internal catheter is threaded through him to puncture his spinal fluid around the injury level. Micro units of anti spastic medication and then pain medications are administered directly to the spinal fluids. In time he can be down to 2/6 medications.  In addition we are told insurance pays for an anti spasticity  study that allows for a 7 -10 day stay in the rehabilitation hospital to optimize his medications within days instead of months. We schedule his spasticity screening for early September. The pump size is concerning. I worry about injuring him when we transfer him or get him in the stander. what if the van breaks again. Will we be able to safely cram him into the car?  I guess we just have to wait and see.

Colin turned 25 on July 30. He made his usual cake request (white cake, chocolate frosting and colored chocolate sprinkles) and dinner menu. Cedar plank grilled Salmon, pan seared Scallops, broccoli and garlic potatoes. He enjoyed it all. The family BD celebration was what he wanted and it was nice to see my boy pass the quarter century mark.

He had his BD party with friends the first weekend of August. D arranged to stay out late with him to go hang out at a friends and socialize. The built a ramp for him to get into the house. He was able to see a lot of people he was not able to regularly. He did not get home till 3:30 am. He chatted about his party while I got him in bed. He was passed out and snoring 45 minutes later when he was all set up and I turned out his lights.

By early August I was in a panic over home care.  No new prospects, still the same tenuous schedule. A had stepped forward and filled in for PT and appointments when D was unable. Colin even took A out late to his friends a few nights. All seemed to go well. If only M could come through.

Mid August I returned to work and we had a visit from Ian. They both seemed pleased to be hanging out together. Their cousin made it one night, everyone enjoying the reunion. It was not nearly long enough. Never is. Ian left too soon and I had to return to public service.

During the end of August my employers messed up my required schedule. This led to an hourly schedule as requested with much more personal time investment. Like I have any of that. What the fuck ever. Now I spend the evenings with my back to my family preparing for the following couple of days as well as doing Colin’s care. I do not get to bed before 11:30. Colin sleeps through the night about 50% of the time.  No surprise by the end of August I have a goddamn cold.

By the end of August Colin is back with 10 weeks of therapy approved and a full schedule. We are managing but barely. A now has family health responsibilities as well as D. M is not quite ready to be alone.

Labor Day weekend and M cannot make it on Saturday again.  This is another lost training day for her. I must ask D to cover A, visa versa and get M trained more. Maybe September will bring balance. between the schedules and needs.  One can always hope no matter how unlikely.

The summer was not easy. The start of the new school year is no more promising in terms of ease. Too many new demands on all fronts. I watch as my plate fills, spills over. I am the only one who will stop the servings. Nobody else even notices how much they put on me.

I have been back at work for 2 weeks. This year seems more demanding of my time and energy. Colin is still dealing with pain and medication balance. His voluntary finger movements are greater in ability but sporadic in frequency. Pain interferes with far too much.  As usual there is never enough time, money, support nor energy.

It is like the universe is suggesting it’s time to get over the tragic alteration in our lives and get on. Somehow nearly 2 years after his accident it doesn’t feel like there has been nearly enough time for adjustment. I have no idea when, if ever, we will make it to whatever is the next milestone. I know it feels like a lifetime away. Every instant I feel a sense of stability, life throws a few wrenches in to sober me up to reality.