Hanging with Joni and Vince

The logistics of arranging  four days away are daunting, but doable.  It was worse last year when I was trying this for the fist time because I was convinced it could not be done. Armed with a successful trip to New York last year, I knew we could make the Chicago visit work. But it was going to take a lot of organization and luck.

The first thing is to arrange for more nursing hours while we are gone. I have to start that a few months ahead of time because without that in place the rest cannot happen. That requires making and justifying a request, waiting while the Regional Center suggests various options to consider, explaining why those won't work and then waiting for approval. It's a bureaucratic process that takes a couple of weeks, but they came through for Maggie.

Right now we have a good group of nurses, but two of them cannot lift Maggie on their own. That meant they could not do a shift while I was gone because there would not be anyone here to help. I gave them plenty of notice and shifted things around so they wouldn't lose out on shifts.

But Maggie needs someone here besides nurses. She gets too lonely and really mad otherwise.  Last year Tim was here to keep her grounded and entertained so that part was easy. This year Tim is in Chicago - in fact that's who we were going to visit. I called my sister Joni. She has two boys away at college and lives about 35 miles north of here - but she works 20 miles north. My hope was that she could do the opposite commute from here. Her husband has a territory to cover and can use pretty much anywhere as home base.  Initially she was worried because she said you have to teach me when and how to suction and all that. I assured her the nurses would do all the medical stuff and that Maggie just needed someone else around. She said "All I have to do is LOVE her? That's easy."

They all got along famously. I got pictures and texts and phone calls. I finally exhaled and figured this really was going to work. I didn't realize how well it was working until Joni sent me a text while we were at Wrigley field asking if I needed oxygen.  I thought she was referring to the game and made a wisecrack in return. She texted again - NO! The guy just called, do you need the oxygen filled? I laughed my head off at that because I realized wasn't thinking about home at all. I was actually relaxed and not worried (oh and I had the tank filled on Wednesday before I left.)



I checked in frequently. Everything was fine. Every nurse showed up when they were supposed to and Maggie was happy and well cared for. Joni and Vince enjoyed our location and took full advantage of Golden Gate Park and the other amenities of the City.  They also had a front row seat on the circus like atmosphere here. She took the dog on more walks than he's been on in a month, got to know the workmen next door and quickly picked up on the quirks of the different nurses.  Her texts were hilarious. She even sent me a video of her and Maggie hanging out.  (After I saw it I told her how to fix Maggie's headrest so her head would not be so far back. ) If you don't remember Maggie's signs - putting her had to her face is "yes" and slamming her hand down is NO! She has a rather emphatic NO in this video which makes my sister laugh..

There were a couple of  moments that caused Joni a bit of angst, though I never had a clue that there was any concern at all. She heard the nurses changing shift early in the morning and though she heard Maggie had a rough night. She said she was downstairs in a flash, but everything was fine. Also,  I told her that the school nurse would ride the bus with Maggie on Friday, but I didn't tell her she arrived separately from the bus. The bus pulled up and Joan quietly freaked out that the school nurse wasn't on the bus. She was just about to lose it when Nurse Janice walked up from her car. Obviously it wasn't a problem, but it scared the bejesus out of Joan. She didn't tell me that until I got home but she said she realized right that one little slip by any of the players screwed everything up. She said "I cannot believe how many things have to go RIGHT for things to work in Maggie's world."

The reason I have so much fodder for this blog is that things so often go wrong.But the amazing thing is that they often DO go right. It just takes a lot of organization to get the puzzle to fit and then and a lot of luck to have things go right for four days in a row.

It also takes a great and generous sister and brother in law who were the final and most entertaining piece in the puzzle.

Where to next?

Toddlin Town

Our brief getaway to Chicago was great. The weather was cold and the wind was blowing, but we really had fun. I just wore everything I owned and kept moving.

 Of course the focus of the trip was to visit Tim, our 22 year old son who moved to Chicago in January. He lives right in the heart of Wrigleyville - just two blocks from Wrigley Field and the 10,000 bars and restaurants that surround it. We stayed in a hotel about a mile away which was a perfect location. We were close enough to walk to see Tim but away from the noise of the nightlife.

We planned to go that particular weekend because the San Francisco Giants were playing the Cubs in Chicago. Steve jumped on line to get the tickets and we were surprised how easy it was and how reasonable the price was. Then we got to the game and understood. It was freezing, it rained and the wind was howling. There just wasn't a lot of demand for these seats in mid April. At least half the stadium was empty. I bet those same seats in the summer time are a tad more expensive. There was a four game series. The Giants won 3 out of the 4 games. We went to the only won the Giants lost. That didn't stop us from having fun.

We met our Friends Austin and Dee at the game and had a quick meal with them afterward. They went home but we kept going. Tim took us to an Improv show so we could experience his comedy world. If you find yourself in Chicago on a Friday night, check out the "Improvised Shakespeare at the IO (Improv Olympics) in Wrigleyville. That was hilarious.

 We did make it to the Magnificent Mile on Saturday morning and walked around while the snow fell on out heads. The tulips are really trying to bloom but the snow and cold keep them at bay.  I understand it's flooding there today, but assuming things survive that, you can tell the City of Chicago is about to burst into spring.

We also traveled a bit North of Chicago to Austin and Dee's house to see how people lived outside of the fraternity atmosphere of Wrigleyville. It was great to catch up with them too. Steve and Austin have been friends since college days, so there were lots of laughs.

Meanwhile, back in San Francisco, Maggie was entertained by my sister Joni and her husband Vince. The nurses were here to do all the medical things Maggie needed, and Joni and Vince were here as grounding forces for Maggie. She thought that was hilarious. In fact, that really deserves its own post.

It was fun. Exhausting but fun. I told Steve the next "vacation" we take will involve a hammock, a beach, and drinks with little umbrellas.














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Catching up and checking out.

Halloooo out there.

Sorry for the delay. All is well, it's just been CRAAAAZY busy around here.

Over the weekend Maggie's private designer, Anne Marie came with the final fitting for the prom dress. It is AMAZING, and it looks incredible on Maggie, but I'm going to make you wait until next week because it is a school project and Anne Marie wants to turn it in and let people see it in person before they see it on the internet. That's fair. Suffice it to say the Miss Maggie is over the moon excited about it. (and I may have accidentally posted a pic on a certain social media site as well...)

In other news, I started a job on Monday. Well, to be precise, I increased and existing job and have a new title. I work as a Parent Liaison at UCSF Benioff Children's hospital three days a week. I've been working in the Family Resource Room on Fridays for the past several months but the powers that be decided to increase my time and sort of formalize what I have already been doing. I have really spent an inordinate amount of time in the hospital and have a pretty good idea how things work. Now I can share that experience and knowledge with other parent and know that it was not for naught and it will be put to good use.

But the biggest news is this. I am leaving this morning for Chicago. Steve and I are going to visit Tim and watch the Giants play the Cubs at Wrigley Field on Friday. At least we hope we will. This is the forecast for the weekend in Chicago.  Steve left this morning so it includes Wednesday. FYI I talked to Steve and so far this is spot on.

Wednesday

HIGH/LOW

42°/37°

Several rainy spells, possibly heavy and with the potential for thunder and even some hail, sweep the area in several clusters Wednesday.

The periods of rain are likely to be separated by precipitation-free cloudy spells. Wider coverage, more frequent downpours develop Wednesday with thunder and possible hail Wednesday night. Blustery, chilly, damp and raw through Wednesday night. Unseasonably chilly daytime highs 15-degrees below normal. Northeast winds 12 to 24 mph Wednesday increasing 13 to 28 mph with some 30+ mph gusts Wednesday night. Widespread rainfall of 1 to 3" is possible by daybreak Thursday morning.

 

Thursday

HIGH/LOW

48°/33°

Another cool damp day for most sections

Breezy east winds hold area temperatures in the middle to upper 40s (50s to lower 60s far south) during the day. Occasional showers and thunderstorms with some heavy downpours.

 

Friday

HIGH/LOW

38°/30°

Mostly cloudy, blustery and cold with some rain or wet snow.

Quite chilly as temps remain in the 30s most of the day. Partly cloudy and cold at night. North to northeast winds 15 to 30 mph.

 

Saturday

HIGH/LOW

43°/35°

Partly sunny start to the day, then clouds build with a chance of brief showers.

Continued very cool with highs holding in the lower and middle 40s. An increase in high and mid-level clouds at night. Northwest winds diminish and become light variable overnight.

 

Sunday

HIGH/LOW

55°/43°

Thickening and lowering clouds with an increasing likelihood of showers and thunderstorms in the afternoon..

Not as cold as afternoon highs surge to the middle 50s. More showers and thunderstorms possible at night. Southerly winds 10-18 mph.

 

 I might accidentally get on a plane headed to Hawaii. No, what's a little weather for a California girl who owns a ton of sweaters? I am looking forward to seeing my son who left for Chicago at the beginning of the year and also catching up with friends who live there. I'm sure we can find plenty of ways to entertain ourselves if the Giants are rained - or rather snowed - out. There seems to be plenty to do.

Maggie is staying here with her nurses and my wonderful sister Joni and her husband are staying in the house while we are gone. Joni can't do any of the things Maggie needs medically and she wondered what her role would be. She asked "am I just supposed to LOVE Maggie?"

I said exactly.

See you all next week and pictures of the amazing prom dress will be unveiled.

Tim's Excellent Adventure

It's Monday and Maggie went back to school. Generally I would be doing my dance of joy right now, but I don't feel very joyful. I'm a bit sad, actually, because Tim left this morning. In addition to putting Maggie on the school bus, I put Tim on an airplane to Chicago.

   

This is a new adventure for Tim. He is moving to Chicago for an indefinite amount of time. Could be three months, could be a year, could be forever. He's been stagnating here and he was smart enough to recognize that so he decided to take a leap and follow a dream. He will take classes at Second City and see if he can break into the very competitive world of stand-up comedy.

Kinda cool. Kinda crazy. But he's 22 and that's exactly when you should give things like this a shot. At 22 everything is possible and there is nothing holding you back. So you sell your truck, pack your bags and go. No matter what else you may think, this is an incredibly brave thing to do.

To be honest, there's a big part of me that's jealous.

And then there's the mom part of me that's worried.

Tim has never been in weather like they have in Chicago. That made Christmas shopping very easy. I just bought him the proper clothes and accessories for a California boy to handle an Illinois winter. Or what a California mom thinks are proper clothes to handle an Illinois winter.  We shall see.

Tim seems to have found a place to live, though he has to meet with his new roommates and landlord tomorrow to finalize things. He has a friend he can stay with for a week or so until that is settled. In a stroke of kismet (and the absolute wonder of facebook), Tim and potential his new roommate have a mutual friend, which they discovered only after connecting on facebook. The mutual friend is in London but vouched for each guy to the other. Nice little insurance for everyone.

Of course he will have to find a job immediately if he wants this adventure to last more than a few months. Tim is personable, reliable, capable and experienced in a variety of things, so he will find something. I will calm down a bit more when I know that has happened.

So the adventure begins. He said goodbye to Maggie this morning and she gave him a big hug. You can see her hand reaching up over his neck in the first picture. Once we got out in front she grabbed for his hand, which was so sweet.

He told Maggie over and over that he was going to Chicago, but she really doesn't know what that means. She will likely call for him on her talker for a while. "Tim, come home see Maggie" or "Tim, come downstairs." It will take her a few days to realize he is really gone and she's stuck with just her parents again. (Oh the humanity!) But we can skype with him and that will entertain her to no end.

Godspeed, Timmy. You are taking your shot and I admire that greatly. If anyone can make this work it is you.

One other thing: if you hit it big, please remember your mother.

And not just as a punchline.