Grouchy Camper, Grouchy Counselor

Mom Camp is almost over. Summer school starts on Monday. That's a good thing because the camp counselor is getting quite grouchy, and the camper is becoming more difficult to please. When Maggie is out of school I lose the only time I have to myself. Maggie and I have fun together, but everything becomes more difficult and more time consuming. She's bored and I'm frazzled, which is always a very helpful combination.

Yesterday we did our gardening project and everything looks lovely. Maggie was really not that interested at all, though she did enjoy watering our newly planted flowers and herbs this morning. Here are two of the five containers we planted.

We then made a quick trip to the mall, Maggie's favorite place on earth. We were shopping for Grandpa who hit the big 8-0 yesterday. A helpful clerk took us all over the store looking for shorts with elastic in the waist that were not basketball shorts.   He seemed to forget that I was pushing a huge wheelchair as her darted through racks and narrow openings. Finally Maggie and I just stopped and stayed where he could see us so we didn't get stuck somewhere.

By the way, Maggie would like everyone to know that a trip to the men's department does not really count as a trip to the mall. She was quite peeved at me.

The nurse arrived but that doesn't really give me a break because she can't do anything on her own anymore. I had to fetch all the supplies downstairs, lift Maggie and help with all the procedures. I had to time things right so I could be gone for awhile as I wanted to go to dinner with Steve and his dad for his birthday.  Steve was already in the East Bay and was going straight to his dad's so I planned to take BART out there. Before I could do that, though, I to arrange for Tim to be around to help with the next set of procedures so I could go.

When the most relaxing part of your day is a commuter train ride out to the East Bay, it may be time for a break.

The three of us went to dinner and them came back to the house for cake and pie with Steve's cousin Jenny and her boyfriend Scott who live in the house with Grandpa Ed.  The rest of the family will celebrate this weekend at (yet another) graduation, and again in a few weeks at a family reunion; but we didn't want the actual birthday to slip by unnoticed. Ed enjoyed his day, which was the main goal.

Of course two of the three things I bought have to be returned, so Maggie gets another trip to the men's department. She's thrilled about that.

We are both ready for Summer school to start.

Dripping with goodies

Another drippy day in paradise. We are on that line between very heavy fog and actual rain. It doesn't really matter what you call it, you still get wet.

Maggie wants an explanation of this thing we call SUMMER when she's bundled up waiting for a SCHOOL BUS in the RAIN. But as you can see, it doesn't really bother her too much.

The drippy day improved when Nurse Janice arrived. She had stopped at a Chinese bakery en route to our house and bought a box of warm pork buns. She gave me one which I enjoyed with my coffee.  

I guess a rainy day could be worse.

Camp Closed, Gone Fishin

Camp Mom is closed until July 15. Both Mom and Maggie are delighted.  Summer school starts today and Maggie was chomping at the bit to get back to her routine. yesterday she worked on telling me with her Dynavox saying, "Mom I go to school tomorrow. Bus please" Once she had those entire sentences formulated she "said" them 500 times. I think she was ready to go back. 

Of course  this will not be the routine Maggie is used to. Summer school is held at a different site (John O'Connell High school)  and there will be a different teacher and likely a few additional kids in her class. Resources are short and things get combined in the summer, but she will adapt.Nurse Janice is still assigned to Maggie and I believe a few of the paras (classroom aides) from Mission are assigned to her class, so there will be enough familiarity to keep Maggie happy. It might be Monday before she feels totally comfortable, but it is an adventure. 

Her day will be shorter and I have no idea what the program will entail, but I am not worried about it in the least.  I treat summer school more like summer camp. It's fun, it's something to do and she actually derives some educational benefit from it. That's perfect. I will pop in a few times over the course of the five weeks, but they have enough to figure out on the first day without me getting in the way. 

On our last adventure before summer school we were cruising around town and I decided to show Maggie where she would be going to summer school. John O'Connell high school is in a mixed use area with trendy lofts and warehouses along with small businesses and family homes. Maggie looked at the building but I don't think she understood that she would be going to school there. She has to experience it first hand before something like that would work. It's only a mile or so from Mission High and she laughed her head off as we drove by there. 

So, these are my first hours alone in 13 days. Maggie is not here. The nurses are not here. Steve left for work. The house is quiet. I do not hear Lady Gaga singing. Ahhhhh. My first few hours of alone time have been luxurious.  I have a million things to get done and projects that need attention, but for now I'm just taking a couple of hours off.  

Camp is out of session. And that is OK with me.

Lazy Days of Summer

Summer school starts today. After three weeks at home, Maggie is chomping at the bit to get back to school. She got sick the week before Memorial Day, and spent four days in the ICU. She recovered at home for a week or so, finally returning to fighting form maybe five days ago. By then, school was out for the summer. She and I went out together every day, but that is not the same as hanging with her friends and spending the entire day engaged in activities.


Mom, too, is ready for school again. I am exhausted. Maggie requires care every second and the care is physically exhausting. It is a lot of lifting, standing, and multi tasking. My recently repaired shoulder is killing me and I need a break.

 While awake, Maggie is really a two-person job - or she is for everyone but me. When I am on duty there is generally no second person to help (unless Steve is home), but when the nurses are here I am the second person. While the nurses take the lead I can do all the other stuff that Maggie requires, like order supplies, make my (almost daily) trip to the pharmacy, take her to appointments, schedule, juggle, and pay the nurses, and do all the paperwork so I can be reimbursed for that. We have nurses in the house 16 hours a day, including over night. The days Maggie is in school, I can get some of that ancillary work done and maybe find an hour or so for me. So, yeah, I am ready.

At 2:00PM on Friday afternoon, Maggie and I were at home and I heard a “pop” from her wheelchair. That is never a good noise. I looked over and she had sheared the bolts off her headrest. Maggie constantly moves and she extends through her spine pushing hard against the headrest. It is ironic, though, because despite all this power, her trunk and neck are very weak and she needs the full support of that headrest. Without it, she cannot use the chair.

Without the chair, she cannot leave the house. Without leaving the house, she cannot attend school. It had to be fixed. Steve can often cobble something together, but he was gone for the weekend. My “cobbling” skills involve duct tape and bungee cords, neither of which was going to work in this case.

I called the Wheelchairs of Berkeley, the place that fixes her chair. The office is in Berkeley, but there is a repair shop in the City too. You have to go through the office to schedule anything. They did not answer. I have the SF shop on my cell phone (there is lots of maintenance for Maggie’s chair.) Wonder of wonder, Chris answered. He knows us very well. I asked if he by any chance had any time immediately. He said he did but he would only be there until 4. The shop is downtown, I was alone with Maggie, and I could not transport her in the broken chair. The nurse was supposed to arrive at 2:30. If everything went absolutely perfectly, this could actually happen.

I took all of the stuff off Maggie’s chair – the talker bag, the suction machine, the ambu bag, the emergency trach etc. It was ready to roll if the nurse showed up on time. She did!! I took off like a shot. As I drove downtown weaving through Friday afternoon traffic, I felt elated. Things never fall into place like that for me. Chris had it fixed in an hour. Maggie and I went out several times over the weekend.

Last night I told her Maggie she was going to school today. She was delighted. So was I. We went through the prep in an exaggerated manner, programming her communication device and getting all the supplies. She is so happy to be returning.

I got up at 6 and hopped in the shower. Her bus comes at 7:30 and the out the door ritual takes a good hour. While I was in the shower, the phone rang waking Steve out of a dead sleep.

It was the school nurse, the one who cares for Maggie while at school. (She has a different nurse for this week; her regular nurse will be back next week). The person whose presence allows me the first break I have had in three weeks.

She is sick. And apparently, there is no replacement. (None that I’ve heard, yet) That means Maggie cannot go to school. Or, she can go if I go with her and act as her nurse; but of course, she cannot take the bus without the nurse, so I also have to act as bus driver.

I have to go pack my lunch.

End of the Rainbow

Transition day. Summer school ends today. Maggie will move on to high school next month. One of her classmates is also moving to high school, but he will be in a different class. Maggie will not be alone in the new class, however, she will rejoin friends from years past. There just are not any that many students in Maggie’s situation – that is kids with significant physical disabilities who have good cognitive skills. The few that are near her age in the San Francisco School district have generally been in her class since kindergarten. There are a few just older than Maggie who are already in high school and those kids will be back in our world once again.

Not all of the physically involved kids are in special day classes. Those that can handle it are in full inclusion (regular classrooms) so they are not in Maggie’s class. Maggie could not keep up with that and would be miserable. She would make everyone else miserable too. She’s a smart kid, but she needs things to be paced in a certain way and presented so that she can process them visually etc. It is a laborious task, but when it is done correctly, she can really demonstrate her intellect. Often kids as physically involved as Maggie also have significant cognitive impairment. Maggie’s impairment is not significant. I am certain that the damage to her brain and the repeated surgeries and illnesses have affected her cognitive abilities somewhat, but she is a pretty smart chick. She wants to interact and show everyone what she knows.

This past year she was the only one in her class who had the ability to use the communication device. That meant a lot of attention was focused on her, but it also meant she did not have any peers using a similar device. There was plenty of communication with her girlfriends and with the other kids in the class, but having a peer using a similar form of communication challenges her. And she rises to the challenge. In the class she will enter, I know at least two other kids use these devices. Maggie will love that, even if it means she is not the Queen Bee for a while. It may be bumpy getting adjusted, but I am looking past that and expecting a good experience.

Before she gets there, though, we have a month off school. Rather than a week at the beach, we will spend part of it trying to get to the bottom of whatever these medical issues are. The school nurse called again today with more alarming news that necessitated a call to the pulmonologist. They are scheduling the procedure to scope her airway and lungs and her GI tract as well. There are some freaky colors coming out of her various tubes – but she is smiling and generally healthy. Go figga. I have learned from experience, however, that anything strange is a harbinger of problems to come. You cannot ignore it; you have to deal with it.

When they investigate strange occurrences with Maggie, you always get a very strange answer. It inevitably starts with, “Well, Mom*, this is something we’ve never seen before.” And my knees get weak. I can hear the rest now. “All these strange colors…. Maggie seems to actually BE the end of the rainbow. Good news: We found a pot of gold. Bad news, it’s in her right lung. Oh, and she’s allergic to it.”

*cringe – I hate it when they call me mom