And Then We Hit a Bump

A bump. A very big bump. I think it's more of a hill or a mountain than a bump actually. Sometime between parking my car at 9:30 Sunday night and 8:00 Monday morning my car was stolen. My 6 month old car that I depend on to get the kids and I around town, between here (Boston) and West Hartford (where we're moving) and most importantly to medical appointments. I have full coverage so eventually insurance will pay for it, but the people who stole the car took away much more than insurance can/will replace.


Most importantly, Little Man's new found freedom in the wheelchair he was just given was in the trunk of the car and is now gone. Without a car we've had to rely on public transportation and his little body just cannot hold up. He's tripped so many times, even wearing his AFOs (leg braces) and his feet and legs are a mess. Before the chair we got around by driving directly where we were going and minimizing walking as much as possible. Basically we didn't go out more than we had to. The car insurance will not cover replacement on any of the personal contents in the car. Eventually, after we have things set up and go through all the new doctors, specialists, appointments and everything, we can try to get his health insurance to replace it, but all this takes time.


It's heartbreaking to see your 11 year old stumbling along while you're trying to make sure the kids basic needs are being met. He's so brave he rarely ever complains of pain, then you get home and his ankles are swollen and look bruised and he can hardly walk through the house. Some days are definitely better than others and I'm not sure why that is. Just one of those things I guess.

This heatwave is making things even worse. Neither Beans nor Little Man cope well with the heat and not being able to hop in the air conditioned car has been just another strike against them. Beans has been teetering on the edge of needing IV fluids for several days, so far we've been able to hold them off and its supposed to cool down tomorrow so I think we'll make it. I've been bolusing tons of Pedialyte into him. He's been getting < 350 calories per day because the formula makes him so sick in the heat.

There aren't even words for how frustrated and heart broken I am right now. I just want our family to have a good life. This is just another stumbling block and we'll get through it, I know that, but it's a huge setback in getting things done. Thank goodness for family and friends cause without their support right now I'm not sure how we'd pull through. One day at a time. When I have these precious faces to look at every day, how can I not just pick myself up and keep moving?