Some Victories

At the beginning fo this week I began drafting a new post about how it was another year and once again we were fighting to get an air conditioned bus for Charlie to ride on. For those of you that don’t remember, Charlie’s brain damage has left him unable to properly regulate his body temperature. When in the heat, he turns very pink and then becomes limp and lethargic. Our neurologist has informed us that if we aren’t careful, this could even lead to a seizure (like when a child seizes from a high fever).

Last year I let Charlie ride the bus in the morning, but the afternoon was a no-go, so I picked him up from school. By the end of the year, I was so completely exhausted from Parvo and pregnancy I paid someone to bring him home every afternoon, which the school didn’t really like.

This year I’ve got two infants (and a hernia), so I knew that I needed to have the afternoon bus as an option. I had it written into the IEP in May, had the neurologist write a note, faxed it to the nurse before school started, etc. On the first day of school, it was the same bus as last year–the one with no air conditioning.

I pretty much resigned myself to another year of picking Charlie up, but his teacher was very nice and faxed the request to transportation for an air conditioned bus.

The next day, a new bus driver called–she has the route now and has an air conditioned bus.

And me? I feel like a horrible person. I’m the reason that the old bus driver lost her route. And what happened to her? I don’t even know. I like the old bus driver. She was really nice on the days when I was late getting out the door, and she made gift bags for the kids. She really cared about them. It doesn’t come up much here on the blog, but I am a HUGE fan of community and this feels distinctly un-neighborly. Ugh!

So now we have our air conditioned bus. Charlie can ride to and from school and I don’t have to worry at all about overheating or seizures. We got exactly what we needed without having to beg or fight or anything. This is just what we wanted.

Some victories are bittersweet, though.

one twin screaming and the other looking at him

No good picture of Charlie, so here's one of the twins that cracks me up.

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Comments

  1. Congratulations on the bus, and I am sorry about the bus driver. It is tough when things work out…but not how you intended them to. UGH!

  2. Yay for the bus sad that the old bus driver couldn’t just get a different buss. So hard. That picture is cute.

    • That picture cracks me up–Lou is screaming his head off and August is just looking at him like, “what, dude?”

  3. Hi! She likely got a different route and I’m sure she understands. No worries :)

  4. I’m very sorry for the old bus driver, but you have to protect Charlie’s health. You shouldn’t feel guilty.
    I love the way August is looking at Louis! I’m surprised that he didn’t cry along with his brother.

  5. If the bus driver is as nice as she seems to be, she will totally get why she needed to have her route changed. A couple of my students are in the same situation as Charlie and it is written into their IEPs as well. Here they didn’t change the driver though, they just changed the bus. Love your pic of the twins and glad the bus situation is resolved.
    Lisa

    • Well, I wish they could have just changed the bus! You make a good point, though. Maybe she does understand. I hope so.

  6. It is unfortunate that the driver just couldn’t get a different bus. Sometimes things just turn out to be more complicated than they really need to be! I am sure the driver understands that you had to get Charlie what he needed. Glad that Charlie can ride to school in air-conditioned comfort and you don’t have to worry about him overheating or figuring out a way to pick him up.

  7. It’s sad about the bus driver…. sad because our school system should automatically come with air conditioned buses. It shouldn’t have to be an issue.

  8. I totally agree, I am sure that driver understood. Ultimately, you had to do what is safest and best for Charlie, of course—there really wasn’t another option.

    That picture cracks me up too!

    Max has some temperature regulation issues too—his hands and legs can get really cold. So lovely when he crashes in our bed in winter and snuggles up next to me. :)

  9. I’m betting that the bus driver simply got a new route and probably totally understands why. One does wonder why a bus trade wasn’t made but maybe a bus with AC is a seniority perk. No matter, Charlie’s health is what matters. You’re lucky you are not in my California School District; we don’t have any air conditioned busses. In fact, very few of our classrooms are either. Because we do have one student with a similar problem the district had to install AC window units in the special education classroom. Your boys are getting more handsome by the day – cute guys.

  10. Well I’m with you. Yay for Charlie being able to ride the bus in the afternoon, but…man. I guess maybe the other driver got a new route. She’ll be alright–but more importantly, now so will Charlie. And ug! You have to stop with the twin pictures. Because I’m about to run out and get pregnant just so I could cuddle a baby half as cute.

  11. All that being said, I think it very sweet that you care about the bus driver. Many would not.

    We live in a small town. Very small. We have this eyesore sewer drain that our crap home builder did not sink into the ground properly. It sticks out 8 inches from the soil. Had the local guy come out to look at it, works for the Village of Galena. Ultimately I looked up the Codes and laws and in the end, the County is responsible for it, since technically they had to approve the development.

    But times were SO bad, this was around two years ago or so, that to have the county come fix it would have essentially wiped out the budget and he would have lost his job. Couldn’t do it. So we have to figure out some other way to conceal it, like a fake rock cover that you can buy for several hundy.

    I think you’d have made the same decision. Community, online, local, church or otherwise, is key. And you know what? I’ll bet the bus driver, wherever she is, understands the reasons why, was told why, and is happy to shift her route on Charlie’s behalf.

  12. Do you just go looking for things to feel guilty about? The old bus driver probably has another equally enjoyable route where she can be patient with busy moms and make gift bags. And she’s probably very happy that Charlie can have the bus with AC. Count your blessings.

  13. Your first duty as a mother is to keep Charlie healthy don’t worry about the bus driver I’m sure they are plenty of other routes :)

  14. Aw, what a fun picture! Glad Charlie got a new route & I wouldn’t worry about the bus driver, I’m sure she’s taken care of. :) I have been feeling really overwhelmed with my 3 lately & Only one of them is a newborn – I can’t imagine how busy & exhausted you must be!!! Praying for you!

  15. That picture cracks me up too!!

    I’m glad he has a bus with A/C now, for both of you. Sorry you lost the driver you really liked though. Geez.