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Standing in my kitchen, waiting for the coffee to finish brewing. I'm numb, but on the verge of tears. I'm so fortunate in several areas,  and SO unfortunate in several others. I'm probably having a pity party, but I just can't help it right this minute. 

Today is the last day of school, and I should be out running while I can. My boy gets home at 10:30am today. In spite of the trouble it is to get him on and off the bus in his wheelchair, I sent him to school so I could have the last 3 hours of break time before summer starts.  And yet, here I sit. Cup of coffee steaming in my hand, in yesterday's eye makeup and my pajamas. I can't get off the couch. 

Just when I thought we'd had a breakthrough in the direction of positivity with my ex-husband, he has gone back to his typical m.o. of 'bare minimum', but this time with poking the beehive thrown in. Seriously? As if I don't have enough on my plate, and without him actually helping more through the injury. He made it clear that the one day he spent with our son so I could work, was THE only help he was willing to give. Like he's doing me a favor helping out with OUR son. I shouldn't be surprised. I should have remembered to have ZERO expectations of him. And yet, I allowed myself to be hopeful. That'll teach me. 

I feel....bad. I'm exhausted. I'm scared about what the next steps are with my boy's knee.

And I'm lonely. 

Well.....SHIT.

My son has now dislocated his left knee once, and his right knee twice. This past Friday night, while getting out of the car, I heard him make an "oof" sound. I turned around to find him on the floor of the garage, and his kneecap was on the side of his leg. He straightened it himself and it popped back in place, but he still wouldn't put weight on it. The next morning, it was badly swollen and he refused to put weight on it. This was different than the previous two dislocations. By Saturday there was no improvement. So I took him to the clinic. An X-Ray showed a chipped kneecap and a dented femur. With possible bursitis and tendon/ligament damage. 

Furk.

My boy is about 2 inches taller than me, and weighs a few pounds shy of what I weigh. I can't carry him. He can't walk. So I've developed this piggyback sort of way to lug him up onto my back and get him to the car. Our amazing Pediatrician got him in for an emergency appointment with the Orthopedic clinic today....aaaaaand they won't touch him. But they did put him into a knee brace that is less painful and more supportive than the one he had. The immobilizer brace pressed down on his chipped kneecap, and he kept taking it off. He's frigging Houdini. He got through duct tape and got it off when I jumped up to switch out laundry loads. Fergawdsake. The new one has an open patella, and wasn't easy to put on....and hopefully not easy to take off. He is in pain, ornery as hell about it, not sleeping and frustrated. Which makes two of us. 

His wheelchair will be delivered tomorrow. He will be spending tomorrow with his father while I work, because he can't go to school without a wheelchair. Thursday he will see a specialist at Seattle Children's. 

After I posted the play-by-play on Facebook.... I got a message from an Aunt on my paternal side. She said she has Ehlers-Danlos Syndrome, and suffered many knee dislocations as an adolescent. She said my grandfather has it as well. All I could hear was "Ehlers-Danlos". Guess which group of people they've found a link in? A large majority of people with Arnold Chiari Malformation, also have Ehlers-Danlos. My son went through genetic testing at age 2 or 3, but wasn't likely tested for ED because he wasn't symptomatic. And now I know I have a family history of it. 

I feel very.....bad. I feel like I passed down a genetic component that has led my child to terrible pain. I'm not sure what to do with that info. 

One foot in front of the other, for now. One foot in front of the other.