Winter is depressing.

I have been training the new lady, F. She works hard and is very willing. Her vehicle is not dependable. She is driving a massive V8 with no suspension, the rear end rides on the springs. I hope it lasts till she gets a better one, which she is working on.

Colin’s myoclonus is not any better. We were excited about seeing the neurosurgeon in late December, but they rescheduled to mid January. D is not working at all through the winter and early spring. F may have a reliable vehicle but if not,  we will deal.

Depression is heavy on my shoulders. I look forward to nothing. Everyday is a battle to keep back screaming in frustration or weeping in despair.

He cries when I turn him, dress him and care for his wound., which is slowly getting better. He is in discomfort 24/7 with no end in sight.  He cannot do therapy, he cannot play his game. His clonus makes it impossible for any movement without severe, debilitating muscle contractions.

No caregiver to replace the entitled baby boy F so I still have no breaks.  Weekends are full time care.

No break during vacation. No fun. As usual, each day I just go through the motions until I collapse in bed.

My daily routine blows; Fuck menopause.

Woken, again, by heat. So hot.Must get relief. Push the covers off. Let the freezing air flow over. Breathe. It will pass.

It’s 3 am. I am now awake and battling night sweats, or whatever the current term is. Menopause. Hot flashes. Fucking bullshit. My appendages seek cold sheets, freezing air. It is barely enough to relieve the increasing internal temperature. I pant and expose myself to the cold cold air. Eventually I doze.

Now woken by cold. So cold. Body exposed, pulling comforters over me to bring the warmth. Soothing and relaxing. It’s 3:28 am. I need the warmth to sleep. Finally give in.

4:10 am. So fucking hot! Sweating and pushing covers away. Sticky and damp. No relief. Get this shit off!! Feeling the cold air. Relief. relax. Sleep.

4:43 am. So fucking cold! Where are the covers? Pull them up. Try to sleep. I feel the stickiness from being hot and curse my body. How much longer until it realizes I am fucking old! Can’t my physiology just accept the fact and move on without torturing me every goddamn moment!?

5:10 am. Hot again. Fuck it. The alarm will go off in 20 minutes.

I just need to sleep. I don’t remember what being rested feels like. Soon the alarm will go off. Soon he will be awake. Soon every moment of my day will be pre programed and instantly modified, until I collapse into bed some 16 hours later. I feel too old for this task. Yet there is nobody else to take it on. Care for my son. Keep him healthy and optimistic without going insane myself.

And the Neurosurgeon appointment came to fruition. The result is a different Neurosurgeon appointment. It was made. Obviously it was was getting their attention.  We met with the specialist and Colin has a cyst thing filling with fluid, pressing on his spinal cord. Requires neurosurgery to drain. Scheduled for March 27. Fucking A!

We had an appointment with his physical Dr. Not our favorite. He is old, still uses pen and paper and complains about the size (depth)  of Colin’s chart. He gets testy and condescending. He tells us the same fucking thing 4 times. We endure him. We need him for medical equipment   We sit in the exam room while he pats himself on the back fo “knowing” what the neurosurgeon told us.  The spinal cord cyst thing. The thing his neurologist told us to call a neurosurgeon. The one the neurosurgeon scheduled surgery for. He “knew”,  and said nothing to everyone.

Fuck him. What good does that knowledge do Colin if you keep it to yourself fucking asshole..

Finally, mid January a weekend CG is found. S has quad experience, is strong and professional. What’s going to go wrong?

She is great! I have some time to relax. Plan things with my husband.  Sleep the fuck in!

It lasts about 5 weeks. She wants to leave earlier lhaving me to get him in bed. She did say she would stay over if asked, but she does not want to work the time she was hired for.

The shoe drops. I still need to expect to care for him due to lack of responsible workers.

I understand entropy is powerful. No guarantees. The same old story.

Colin’s father came to visit late February. He tells me his younger sister has died.

WHAT THE FUCK?!!

This is a woman who was a part of my young years. My twenties. We backpacked, hung out, were pregnant and experienced new motherhood together. Our first born boys are cousins and we spent days together for the first few months until they moved to Portland about 1990.

She was barely 60. Collapsed and died out of nowhere. Fucking yoga instructor and RN.

How am I still alive? No preparations for my family if I go suddenly.  This is FUBAR!

So Spring is here now. Rain and snow and wildflowers.

Colin’s surgery went well, his myoclonus is gone. The surgeon said there was a lot of pressure on his spinal cord. He was admitted around 10 am on a Tuesday. His surgery was done by 2:30. The surgeon said it was multi-lobed also. He had a non private room by 6:30 and I was allowed to go up. He was complaining about having to share a room as they were “documenting” the bedsore. They completely messed up his medications (as usual). He was not given any oral baclofen for the remainder of the day.  He was in misery.  I kept him as comfortable as possible. His “roommate” was moved around 9:30 pm. He was happy about that. They told me I could stay with him so I ended up confiscating the guest chair from the other area and making a ghetto bed. A bunch of pillows and a blanket. Colin did not sleep at all that night. He woke me up several times to redo the WiFi connection. SOP for hospitals must be “move new patients into a shared room at 2:30 am, turn on all lights, be as loud as possible to ensure everyone is disturbed.”  They do not deviate from that.

There was a plus side to this new roomie. His bed came with a DVT pump that attaches to leg cuffs. Colin had the cuffs, but a pump “could not be found”. This guy had no cuffs. So at 4:30 am I took his pump and got Colin all set up. Seriously, if I had a way, I would have taken that nice quiet pump and I doubt they ever would have noticed. As it was I had 5 bags of pillows and 2 backpacks full of his supplies. I couldn’t carry anything else.

By 8 am he had had the neurosurgeon check in and discharge him form neurosurgery care. We needed the floor doctor to discharge him form the hospital. He had visits from PT and OT but they could not assess him without his baclofen. By 5:00, we were out the door, loading up. Just in time for the medical worker masses to be getting off. Onto the freeway. With us.

Colin had just had neurosurgery. We are in a van with DISABLED PERSON plates. I cannot move quickly whether it be turning or braking. People are such assholes. People going home after work are total fucking assholes. I kept leaving space between the car in front of us so I would have time to brake gently. The douche opportunists relentlessly  crammed into that space forcing me to brake quickly. No consideration for the condition of the DISABLED PERSON inside the CLEARLY MARKED van. Fuck all you losers. I can only hope karma gets your sad inconsiderate lives and you get the same in return. You people deserve nothing less. Fuckers. Stay the fuck away from us. I will ALWAYS put as much space between us as possible but one of your com padres will take it. I hate people because of people like you jerks.

His bedsore is getting better but it’s a slow process. He starts feeling poorly when he’s in bed all the time, so we get him up for a few hours. He plays games online and has little teams of players from around the country. One is a childhood friend in San Diego. And his brother is getting in on the fun as well.

We are getting ready to return to therapy and if all goes well, we will have him back where he was nearly 2 years ago. Hard to believe we have finally gotten that particular problem solved.

Back to weight control. catheter management, bed sore healing. The usual 2 steps forward, 3 back.

F is not going to work out. She is unreliable. Doesn’t show up and won’t call. Happened twice now. S will be leaving in July and I believe our original D will not return once his school is done.

We really need a live in but it’s so hard to share our space. People are not often respectful of our things.

A plan for the summer. Make a will, and find some long term care for him. I don’t know if that’s possible so we are going to find out.