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.

Chance encounters

When you have a child with dramatic issues, people tend to approach you. Usually it's a very friendly hello or sweet smile. Sometimes it's not. (I've written before about some of the strangest encounters I've had.) It's just part of the whole package and you have to get used to it. It gets tiresome being "on" all the time, but there are certainly rewards. I had one of those encounters yesterday, and it turned out to be a wonderful surprise.

Maggie and I went to the Ferry building and walked along the Embarcadero enjoying the sun. We went to the fountain at Justin Herman plaza and I took Maggie's picture to continue our "Where in San Francisco is Carmen San Diego" series.

 There were two young girls playing behind Maggie and I waited a moment for them to get out of the shot. They were having so much fun I had to smile at the mom who was with them. She offered to take a picture with Maggie and I together and I said "no thanks, I just take pictures of her on our outings and post them on facebook to bug people."

She laughed and asked if I was from SF and I said yes. She told me she moved away 9 years ago and that she has a 12 year old a son in a wheelchair and wondered what it would be like to raise him here. I looked a little closer because I know a lot of  other kids in wheelchairs in SF and have since Maggie was born. I didn't recognize her. I asked where she moved to and she said Jacksonville Florida.  That's when the light went on. I remembered a family who moved to Florida  I said "I know you. You're August's mom." It clicked for her at the exact same moment and she said "is this Maggie?"

 Funny. we remembered the kids names but had to ask each other what our names were. That makes me smile.

It was a very chance meeting and it took us both by surprise. Ilene said she never says anything about her son to strangers and doesn't know why she said it to me. Perhaps she knew on some level that I was not a stranger.  She keeps in touch with another friend from here, but the time and distance and the realities of our lives caring for our kids has taken its toll on relationships for all of us. She was out here on vacation with her daughter while her husband stayed home with her son. I can certainly relate to that. Her husband is the author of  A Life Beyond Reason, which  I posted here a few months ago. (If you didn't read it then I recommend it now.)

It was funny to hear her trying to explain to her daughter, who was born in Florida,  how she knew this lady. Her daughter and friend were as sweet as can be and she took our picture with her mom's phone.

The whole thing was surreal, but great.  I reconnected with an old friend in person and then we found each other on facebook, instead of the other way around.

I'm glad we went down there yesterday.

Gray Skies are Gonna Clear up, Put on a Happy Face

There is a strange yellow ball in the sky surrounded by pale blue sky. Hallelujah! Maggie's summer vacation started 10 days ago and this is the first sun we've seen.  It's 7:30 AM, we are getting OUT OF THIS HOUSE in the next 30 minutes. (We have to I have to move the car by 8:00 for street cleaning day.)

One learns to take advantage of days like these. They are far too infrequent. Summer weather in San Francisco is generally about 10 days in June and then again for a couple of weeks at the end of September/beginning of October. This rain cut into the front end. The dreariness really wears on one, especially when you know the summer fog is just a couple of weeks away. It also puts a major crimp in our outings.

 We did manage a walk in the park Sunday but kept one eye on the gathering black clouds and didn't stray too far. On Saturday there was a deluge and Steve was busily rigging up a giant umbrella over Maggie's chair.

 I watched for a while but finally stopped him. I said "this child has not been able to keep her oxygen numbers up for  a month, perhaps a walk in the pouring rain is unwise." Steve just looked at Maggie and said, "I hate it when she's right".  We' drove to the museum at the Legion of Honor instead.

Yesterday Maggie and I went to the California Academy of Sciences which houses the aquarium and multiple other attractions. We can walk there in about 10 minutes, but once again it was raining. We went in the car and parked about 100 yards away. We went inside to find that every single child in San Francisco under the age of 7 was there. Holey Moley it was crowded and extremely loud.  We stayed for a while kind of humoring the situation and one another. Maggie used her talker say "Mom. I want to go. Mom I go to car." That was all I needed to hear - we went for a ride instead.

We did reconnaissance for today's outing, checking out possible parking spots for our outing. There were rumors that the rain was going to end and we are bound and determined to get some sun and fresh air.
We are headed down to the Embarcadero for a walk along the Bay.

If only I had more faith in the nice weather rumors, I would have purchased these glasses Maggie tried on at the Academy of Sciences.

San Francisco's Bravest

About four years ago we had to call 911 twice in a period of two or three weeks. It was not too long after Maggie got her trach and things were terrible. I was working frantically to get Maggie to breathe and Steve just dialed three little numbers. In a matter of minutes a truckload of firemen arrived followed closely by the paramedics. Both times Maggie was taken to by ambulance and admitted to the hospital and both times she recovered. That recovery is in large part thanks to the assistance of the San Francisco Fire Department.

It is a source of some pride to me that with all the medical emergencies we have dealt with that we have only had to call for help twice. It is also a source of great relief to me that the excellent help was so readily available. Those professionals took care of Maggie and they took care of me too. (see Maggie World: Memorable Statue).   Happily we have not needed them since, but I have rested a little easier knowing they are there if we do.

The San Francisco Fire Department, probably like fire departments all over the country, seems to be made up of men and women that you want to hang out with. They are real life heroes who just go about their business and seem to have fun in the process. They wave at kids while on their way to put out fires and respond to every possible emergency in all parts of the city.  They're as cool as cool can be. Really, who doesn't love a firefighter?

A few years ago a friend was awakened by a firefighter banging on the door telling her to get out of her apartment as the building was on fire. As she stood outside on the street in the early morning hours, she asked a firefighter if he would get her pet rabbit to safety. He went right in and pulled the frightened but unharmed bunny out, cage and all.  How sweet is that. 

In another case I witnessed a traffic accident. A little girl and her mom were in a car that was hit by a red light runner. The car was messed up and could not be driven. As the paramedics tended to (the slightly) injured in the other car, a fire fighter went to the little girls wrecked car, pulled out a wrapped birthday present, put her on the fire truck and drove her to her friend's birthday party. They turned a scary situation around for her and I'm sure she was the talk of the party when she arrived in a fire truck. 

 This week another family had to call for help as their house suddenly caught fire. The family escaped as the fire truck arrived. Without hesitation the firefighters rushed in to do their job. Two of them didn't come out. For the first time since 1946, two San Francisco Firefighters were killed in a fire. The fire department and the entire city is bereft. 

My heartfelt condolences go out to the families of  Lt. Perez and Firefighter/paramedic Valerio, and to all members of the San Francisco Fire Department. We take you all for granted far too often. I thank you for all that you do every day. 

I also feel badly for the family who called for help that day. These men were doing their job protecting that family and paid the ultimate sacrifice. I cannot imagine what they must be feeling.  But I think we all know that it could have been any of us calling for help and they would have come. 

 Because that is what they do. 

Learning the Retail levels

Mom Camp, week one was a study in retail levels, something every girl should learn. We started at the top and moved down. We had  Tuesday at Tiffany's, did Wednesday at Macy's and Thursday at TJ Maxx. I really should have done things in reverse order to give Maggie a sense of accomplishment.  

I'm sure this will shock you, but Tiffany's is not a normal stop for me. I've only been in there a couple of times in my life. Maggie and I popped into Tiffany's out of the rain looking quite bedraggled and unlike the typical Tiffany's customer. I left my necklace - a gift from Steve for our 25th anniversary - to be lengthened and off we went. I can't believe I didn't take Maggie's picture amongst the finery. We cruised around Union Square after that and I thought of going back for a picture, but it started to rain (again) and we were three blocks from the car. We opted for a bee line to the car instead. 

We also manage to squeeze in a a trip to the pulmonologist, which is always exciting and ended the week with a ladies lunch. Maggie went to lunch with me, my sisters and my mom to celebrate Grandmas' birthday. That was fun. We went to the Spinnaker in Sausalito. The dining room, which sits over the bay, is completely made of glass. It's like a reverse aquarium, the people are sitting inside the glass watching the sailboats. Maggie thought that was great, but not as sun as pulling off her oxygen tubing about thirty times during lunch (I think she's feeling better.)

Before we went to lunch, thought we did Maggie's favorite thing. She got her summer haircut. I think she likes it.

Now I have to get cracking on activities for this week. There is always golden Gate Park, just steps from our house, but it has to STOP RAINING first. Otherwise, we'll have to do Saks 5th Ave, Nordstom and Marshalls this week. 

Summer school starts Thursday. 

Sand castles

Maggie's room is small and oddly shaped. We had to add a shower to the half bath and that required using space in the room. The room is  full to bursting. It was never designed to be a bedroom. It is the converted breakfast room of the house. Accordingly there is no closet and no storage. And this girls has a LOT of things that need storing.

Her clothes that need a closet are hanging in the hall closet. Her extra supplies are in the basement - taking up numerous shelves. Her room contains her giant bed with the built in drawers, a chair for the nurse, another dresser, one of those little plastic drawer sets full of tubes and supplies and a set of shelves that are spilling their contents. The bathroom has two cabinets full of supplies and a bath seat in the shower. these days the bath seat is largely used to dry tubes and pieces of the nebulizer of suction machines. Maggie is just too big to fit in the shower anymore.

In addition there are the machines. She has an oxygen tank, a suction machine, a compressor for the mist, a feeding pump, a nebulizer, There is no room for the pulmo vest so that lives in the dining room.  Another suction Machine and the dynavox stay in the living room to charge at night. The wheelchair is only in her room if she is sitting in it and then passage is impossible unless one walks over the nurse's chair to get out to the deck or into the bathroom.

There is simply no room for anything else. I had to draw a line in the sand and say no more. People want to give Maggie lovely decorative things but I have to say no. We are at capacity and beyond.

But now she needs another machine. The doctor says the CPAP machine is necessary at night to get Maggie's lungs to open, and she says it's only the size of a toaster. Ok, where will that go. She will need it all night every night as she does all the other machines, so we have to find a place.

I have to go move that line in the sand. We need more room in the castle.

Camp Mom is all wet

So far Camp Mom is more like Camp Granada. They say we'll have some fun if it stops raining.