Traffic Jam

I've been working at UCSF Benioff children's Hospital for the past few months. I just go in one or two days a week and work in the Family Resource Room assisting parents who have kids in the hospital. It seems I can relate to the things they are dealing with. 

I never wish for Maggie to be in the hospital, but if you are stuck in there yesterday would have been a good day. They were having a special showing of Brave for the kids in the hospital . The kids could watch it together in the playroom or they could watch it from their bed in their own room. Animators from Pixar were visiting the kids and answering questions too.  I thought about bringing Maggie up there to watch it with her friend who is admitted there, but decided that was not right.

I am seeing the hospital through different eyes as an "employee" (really more of a contractor.)  I don't have the bleary- eyed, worried, tunnel-visioned feeling that I have when Maggie is in there. Of course I noticed the kids cruising around the halls in wagons or cars like these, but never appreciated it that much because I was always in my head. When I take away the "worry brain" I can enjoy the magic a little more. Generally you see  kids in these cars with mom or dad rolling the IV pole behind them. They are all making the best of being in the hospital.

Yesterday as I came around the corner, I saw all these cars lined up and just cracked up at the look of them, including the sanitizing wipes on the wall above them. If  you know how freaking impossible it is to park at UCSF, you will appreciate this even more.

A step forward

I know people see this issue from very different points of view, but I have to say I am delighted by the Supreme Court's ruling to uphold the Health Care law. I'm aware of the issues and have no desire to debate them; nor do I wish to do a victory dance that it passed. My delight is from the message that was sent. Today the court said that Maggie and people like her matter.

When your life is so involved in the medical world, you are close enough to see a lot of flaws. One of those is that people - and especially sick or disabled people - are sometimes treated like disposable objects. It is the the sickest and most disabled who were being cut off from, or denied needed benefits. Their medical conditions were used against them to deny them access to medical care. It was a dizzying argument. Today's decision changes that course for a lot of people. Today's decision says that sick and disabled people, including Maggie, matter too.

I feel like society took a small step forward today.

Right tool for the job

When we invited folks to Maggie's big 18th birthday fandango we asked for no gifts. The idea was that the party was to thank all those invited who helped Maggie in some way. Most complied. A few thought that was nonsense and gave her gifts anyway. Maggie did well and had a great time.

One of those gifts was this tool set from Barb, Maggie's Physical Therapist. She thought every girl should have her own tools set, including the cool tool bag. The fact that it was puce and pink was just a bonus. There is a matching hammer, screwdriver (flat and philips), wrench, needle nose pliers, tape measure and a level as well as two sets of allen wrenches. 


Though we have not yet had a use for the level, I believe we have used every other tool multiple times.  


There are a hundred different places on the chair that need help and we always have the right tool to fix it, though sometimes that's not enough. For instance, when Maggie's foot was stuck in the wheelchair a couple of weeks ago, I ripped into the allen wrenches until I found the right size and tried with all my might to get that box off. I had the tools, but not the strength and had to call the fire department for help. (They had the strength, but didn't stop to use the tools and just snapped the bolt - and I'm still fine with that.) 


Maggie's talker has been very temperamental the last few days. I had to keep resetting it and then it would work for a while but stop scanning again. Finally I realized one of the two switches was bad. It was probably failing over the past few days and I was blaming the computer instead of the switch. Once it stopped completely, light finally dawned. I have a few spares, so changing the switch was easy enough.  All I needed was a phillips head screw driver, which is included in the handy dandy pink and puce tool bag.

I figured it was time for Maggie to lend a hand. This was her voice we were working with. It was her switch on her tray and her tools.  I told her she had to give me a hand and she just looked at me incredulously. Me? help YOU? That is not how this set up works.

Maggie would have no part of taking the old one off but became quite fascinated when I unscrewed the old one.She decided it was worth her effort to help me put the new one on. 

She was quite proud of herself when she was finished. I'm sure she's looking for more projects.


 If I come home and she's remodeled the bathroom, I will be delighted. 
. 

Brave

Haven't seen this movie yet and I want to. From what I've seen of the previews the heroine is like Maggie if Maggie was verbal and ambulatory and medieval and animated.

Weekend

Nice weekend. Yesterday Maggie and I went downtown yesterday to the Westfield Mall and San Francisco Centre, which are connected at each floor. Maggie enjoyed cruising around two separate malls without having to get back in the car. Twice the entertainment. And we still didn't buy anything.

Today we went down to the Hyde Street Pier, but Maggie slept through the entire outing. Even the Balcutha, which she usually loves (because she had a field trip there in the 5th grade) could not entertain her.

Imagine that. Taking a teenager on an outing and having them act bored or sleepy through the entire thing. Shrug.


This evening we are just hanging around. Maggie is catching up on The Economist. She finds those articles so very inciteful, even upside down.

Hope your weekend was good.

Having it all, whatever that is.

Today I read Why Women Still Can't Have it All  by Anne Marie Slaughter in the Atlantic Monthly.  I have seen it everywhere I turn today. If you haven't read it, you should. It's long, but worth the time spent. The author dares to speak some truths about valuing family obligations despite societal expectations. Though her specific experiences are very very different than mine, the underlying similarities are there. We need to not only respect the choices people make regarding their families, but to honor them and give them a place in a successful career. We need also to find a way to respect situations different from our own without judgement, especially where the luxury of choice is not present. 


  I started practicing law in 1985 when I graduated from law school and passed the bar exam. I went steadily up the tiers toward partnership for a few years and then had a baby. I went back to work full time and managed everything very nicely. Then I had another baby and did the same thing, though the juggling act was markedly more difficult with two kids. I thought I resumed my climb but found out later that those two maternity leaves were really quite the career error. It was made very clear to me that despite my aptitude for and commitment to the work, I had been placed on a "mommy track". And the mommy track at this particular place was not a different track leading to the same place, but a dead end. but  It was blatant sexism. I changed jobs and started up again.

As Professor Harold Hill says: The sadder but wiser girl is the girl for me.

A couple of years after all this happened Maggie was born. At first we thought she would have a complicated course in infancy but would be OK after several surgeries. Things became increasingly complicated over those first weeks and  it became clear very quickly that my career was over - or at least on a very significant hiatus. I suppose it didn't have to be my career, it could have been Steve who left work. I don't remember ever even having a discussion about that. And to be clear, I don't feel even the least bit resentful about that. (and I don't think he does either.) 


Some people understood the situation. Others did not. I was asked when I was going back to work, why couldn't I meet them for drinks, why was I giving up all my expertise. I was told that I wasted my education, that I was too smart for this. Other people had expectations of me. I had expectations of myself. All those expectations went out the window when Maggie was born. For a long time I grieved for what I lost, but I had to reinvent myself, and we had to reinvent our family.  


It wasn't a conscious choice in any way. Something had to give. This wasn't just a matter of daycare versus at home parenting, this was life and death. Maggie could not go to a daycare and we could not afford the round the clock nursing care that she needed.  Maggie needed me in different way than most babies and the boys needed me in a way that all kids need a parent with the additional issues of worrying about their baby sister. I needed to care for all of them - for all of us; moreover, I wanted to do it. We were under siege and I was protecting my family. It was instinctual. It was hard. It was expensive. It was scary We had to change everything and work 24 hours a day to keep everything moving, but we did it. 

We slowly built a new life and learned everything there was to know about all of Maggie's medical and developmental issues. I was her advocate, her voice. I kept the boys on track and weaved all of this medical stuff into our lives in a way that felt almost seamless. It was working. Then one day someone said to me,, "I know she's sick, but you have to live your life too."  That was especially offensive. I WAS living my life. I AM living my life. 


 People feel sorry for us because of our circumstances,we have a disabled child, we had to sacrifice 50% of our income, I had to give up my career, we can't travel, etc etc etc.Our life did not turn out the way anyone expected, least of all us. 


Do I miss my old life? All the time. 
Did we wish for this life? Certainly not. 
Do we wish things were different? Of course. 
Did we expect this life? Not in a million years. 


Did we survive? You bet!


Have we made the best of things? Absolutely.  


Am I proud of that? 


You better believe it. 






  

Hurry up and wait

Getting Maggie out the door for the bus for summer school is proving to be a challenge. The morning routine has always been ridiculous but now it's besting me. The bus is scheduled to come at 7:32 but every morning when I get downstairs, he is already waiting. It's uncanny. Every bus in Maggie's 15 year scholastic career has arrived on time or late. Maggie is the last one picked up but still the bus is early. It's like Magic.

I am consistent about getting everything ready the night before. I program the talker, program the coffee pot and charge everything that needs charging. Some things have to wait for the morning. I cannot fill the oxygen tank the night before or it will be empty again in the morning. The last thing I do in the morning is feed Maggie so she can head off to school with a full stomach and be on schedule for the rest of her feedings at school.

This morning I was bound and determined to be ready. I plopped Maggie in her chair, filled the oxygen, unplugged the fully charged and already programmed dynavox and the suction machine and packed them onto the back of the chair. I brushed Maggie's hair and put on a scarf. I put the tray on the front porch for easy retrieval from the front and headed down the elevator. I put Maggie's music and a bottle of water and added the diapers and case of food she needed  The clock said 7:15. I still had to feed her, but I could do that downstairs.

Feeling quite smug that on Day 7 I finally beat the bus I opened the garage door and the bus pulled up that instant. Arrrgh. I still needed to feed her. The school nurse was there and said don't worry about it, he's early. Still. it's a thing with me. I don't like to keep folks waiting. Janice told me that she would feed Maggie when they arrived at school  I learned that because they arrive so early arriving, the driver cannot unload the kids. There are no teachers or anyone else there to meet them.

WHAT?!?!?! I'm busting my butt to get downstairs so that Maggie can sit on the bus for 10 or 15 minutes when she arrives too early at school??!!??

Tomorrow I will be downstairs ready to go at 7:32 and not a moment earlier.

Playing Catch

It is perfectly normal to go to the park to play catch with your daughter, but when we go we play catch WITH our daughter. And she loves it. Fortunately neither of us has ever failed to make a catch.

Green Acres

As we went downstairs to catch the bus on Thursday morning, it was instantly apparent that a skunk had sprayed in the back yard. The stench was strong. After Maggie left I took a shower and went back into my room and realized the smell was very strong in there too, which was odd because my bedroom is in the front of the house. That's when I realized that Brisco (the dog) was the recipient of the skunks spray.

Steve went right after the smell with dawn dish washing soap (we didn't have any tomato juice.) The dog was less than pleased with this part of the process.

It did a pretty good job, and the lingering smells finally dissipated. There were tell tale signs of digging etc in the yard and we knew the skunk would be back. Steve decided to set the "Humane animal trap" that he purchased after Brisco was attacked by a raccoon.

This morning Maggie and I went out to water the back yard and lo and behold, Pepe lePeu is stuck in the trap.











Great. Now what? How does one get a skunk moved without getting sprayed all over again. I grabbed the dog (who was oblivious to the presence of the skunk) and headed back inside. Steve was sleeping in for Father's day, but this was a little more pressing. I woke him saying, "It's Father's Day. Congratulations it's a skunk."


Animal control came out and we learned that it is illegal to trap a wild animal because, after all, they were here first.

The skunk was relocated - but not far from here and we presume he will find his way back. We presume right about now there is a convention going on in the urban wildlife union hall and they will all be here to strike tonight.

Chillaxin

Maggie is enjoying the more laid back pace of summer school. In fact last night as she was hanging with Tim on the couch, she thought she should help herself to his beer. We had to convince her not to start drinking on school nights.

She agreed

Connections and elections

It used to drive my husband and kids crazy that I would run into people I know all over the city. I told the boys if you stay in San Francisco, the same thing will happen to you. San  Francisco is a world class city, but it is not a huge place. If you grew up here and stayed here like I did, you know a lot of people, especially if you are part of a smaller community within the city. I am a part of several smaller communities including the community of disabled children and special education. I have met countless people through Maggie. But that cannot hold a candle to the San Francisco Catholic school connection. 

I went through the Catholic schools as did all six of my siblings, my parents and most of my cousins. Many people move away, but like many who stay in the City I sent my boys through them too. That just multiplies the effect as the next generation of connections is made. It is an enormous group of people but you can make a connection in less than 30 seconds. If you didn't actually go to school with them you knew their brother or lived next door to their cousin or something. Even though we move on and meet new people and socialize with friends we've met as adults, those childhood connections are strong. Even stronger if you have kids doing the same thing. We are basically raising our kids just as we were raised. 

On of those people is my friend Nancy Hayden Crowley. I have known her since I was in the 5th grade and she was in the 2nd grade. She was a hilarious kid and is a hilarious adult. As a kid she was friends with my sister Ellen, though as we got older and age differences didn't matter any more we all hung out together. She has a son Maggie's age and a daughter a bit younger, but it is not the kids that connect us. It is so many years of knowing each other so well. It takes you back.  Whenever I run into her, which is often, I instantly feel like I am wearing my middy and tie in the St. Stephen's school yard. She lives in the house she grew up in, sent her kids to St. Stephens and  remains an active member of that neighborhood and community. Now her husband FX Crowley is running for supervisor of District 7.

I drove past her house the other day and she was organizing her husbands campaign workers as they canvassed the District. I stopped and she ran over to the car to talk to me and say hello to Maggie.  She gave us campaign buttons and offered donuts, even though we live in District 1. We laughed through our entire conversation, which was only about 10 minutes because she had to get back to work. 

As I drove away I thought to myself,  I cannot pretend I am on the school yard anymore. Of course I know other people in City government but this is different. If FX Crowley wins this election Nancy will be the first lady of District 7.  I don't think San Francisco supervisors host too many State Dinners in their districts, but I would love to see Nancy presiding over one.  

Middys and ties will be de rigueur.

my 6th grade class picture from St. Stephens

Dance of Joy

Maggie was very excited to head off to the first day of summer school. She has her paramedic story to share and a couple of battle scars to show as well. 

As the bus pulled away, I started to hear the peanuts theme in my head and had to keep from starting my dance of joy until I got back in the house. I have a reputation to maintain, after all.

 Now I'm dancing! And I have a feeling Maggie is too.

911. What's your emergency?

Let me start this by saying Maggie is fine.

But we had a helluva afternoon. I think it is safe to say that the boredom of mom camp was shattered.

Yes that is a picture of the San Francisco Fire Department in my dining room looking at Maggie’s medical background for their paperwork.

Maggie was home with the nurse and I was running errands like a crazy woman, trying to get back in time for her next procedure. I knew I was going to be late, but she is ok for another 30 minutes or so and I just had to get some groceries. I was standing in line to pay when my phone rang and it was Maggie’s nurse, Fely. I answered and without waiting for her to speak said, “I’m almost done and I’ll be home in 20 minutes.” She said, Sally, something is wrong. Maggie is very upset and she is turning blue. WHAT!?!? Is she ok? She is now, but she is crying uncontorllably. Is she blue now? No. The trach was plugged and I cleared it.  I am giving her oxygen. Ok. 

Lest you think I'm inattentive, this does happen with Maggie. It's never good, but once it's over it's over. Still I wanted to get home to see for myself. 

Of course it took FOREVER to get checked out and for the first time in about 1 year I was shopping at a different store, not my neighborhood Safeway. I was at least 15 minutes from home but I had to get out of the store. As I loaded the groceries into the car Fely called again. She sounded more worried. I said, “I’m coming now. DO you need 911?” She said no. She was giving Maggie O2 but she seemed to be in pain.

I drove as safely as I could while fighting panic. Tim was at work in Marin. I called my neighbor who is an RN to see if she could pop in and do an assessment. No answer. I called Steve to see if he was almost home. He was still in his office. He said he would leave right away, but I know I would get home before he did.

When I arrived, Maggie was in distress. Fely was giving o2 and her respiratory numbers were fine – but her heart rate was in the stratosphere.  I made sure the trach was clear. I was perplexed, for sure and said, let’s get her in bed. As I tried to get her out of the chair, I saw it. Her foot was completely wedged in behind the foot box on her wheelchair.  I could not move her and I could not free her foot.

I grabbed the tools and tried to loosen the box but I was fumbling around like an idiot. I finally found the right sized wrench but I couldn’t budge the bolts.  I was freaking out. I needed help and I called 911.

In a way, this is like a normal kid problem, right. Granted, it involved a wheelchair, but she needed to be freed. She could have been up a tree or locked in a closet or something like that, right? This could happen to anyone, right?   As I kept giving information to the 911 dispatcher, I realized maybe it wasn’t so normal. 

“San Francisco 911 what’s your emergency”

My daughter has her foot wedged in behind a piece of her wheelchair and I cannot free it.

Is she injured?

She is definitely in pain, but I can’t tell if it’s injured or broken or just stuck (note – I was not calm)

How old is your daughter? 18.

How did she get her foot in there?

 I don’t know?  She has CP and gets herself into some strange positions, I have never seen her foot back there before.

Oh. I see. What does she say happened? Can she tell you how she did it?

No. She’s non verbal.

Oh. I see. How long has she been stuck?

At least 25 minutes I’m trying to get the foot box off, but I’m not strong enough to move it (shrieking a bit)

Ok ma’am. Take a breath. [When he said that I realized I hadn’t taken a breath in several sentences] The Fire Department and paramedics are en route.

It took about 4 minutes. That is a very quick response, but it is a very long time to wait.  I did have the presence of mind to put the dog outside so he didn’t bother the firemen when they arrived and to call Steve and tell him what was happening. I did not want him to have a heart attack when he saw the Fire trucks and paramedics in front of the house.

First came the firemen – about 5 of them. They surrounded Maggie. I couldn’t even get into Maggie room. I heard a “crack” and knew the chair was broken. I  Did Not Care.  More rescuers arrived.  They just kept coming. There were at least 10 guys in my house. The firemen left when the paramedics took over. We were down to five guys and then three. At some point Steve arrived too. The paramedics  determined her foot was bruised, but likely not broken. They were concerned about Maggie’s breathing and I assured them her weird breathing was her norm. When she started grinning at the firemen and doing her own version of flirting, I knew she was really ok. She pretty much owned every guy in the room.  She was stressed, but fine.

 I was just stressed.

A huge thank you to the very kind firefighters, emt’s and paramedics and everyone else who was here. We 

do not need help very often, but we did today. It is sure nice to know help is there when we need it. 

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.

Changeable plans ahead!

My plan was to take Maggie on a Bay cruise today, but she's been a tad under the weather and I figured maybe rolling around on the Bay wasn't a great idea for someone with some intestinal problems. Besides, I'm not sure that's something I want to do without an extra pair of hands.

The weather looked fabulous this morning. The sky was blue and Maggie's room in the back (east side) of the house was warm and cozy. I dressed Maggie in her new halter top that we bought yesterday. She looked great. She thought it was hilarious when Dad came in and said, What are you wearing young lady? Where do you think you are, Las Vegas?"

Because of the lovely weather, Plan B was a walk along the promenade above Ocean Beach. There is a walkway that goes for about a mile or more and when it's nice it's a great place to walk. As we loaded into the car I realized it wasn't quite as warm as I thought.  We headed west for a couple of miles until we hit the beach. The wind seemed to pick up with every few blocks we traveled.  I parked, opened the door, lowed the lift and immediately closed it again. It was blowing so hard out there that sand was flying everywhere. Blowing sand is no fun for anyone, but especially not for someone with a trach. It was not exactly wheelchair friendly either; the walkway was covered with the blowing sand.
   

Time for Plan C. Maggie and I turned south and hit Home Depot in Daly City. We bought new shades for her room (she pulls and yanks on them and we have to replace them regularly) and we decided to starts a new project as well. We bought a bunch of plants, flowers, herbs, tomatoes, seeds and even some bulbs. Tomorrow morning we are going to plant them in containers on the deck so Maggie can be part of watering them and watching them grow.  Stay tuned to see if we actually get this project going.

Mom Camp goes Science!

Changing her spots

Maggie discovered some loose fabric on her headrest and started pulling. In a matter of moments the thing was in tatters. Big brother Tim decided to fix it up. My friend Kathleen sent some wild duct tape the last time we had to cobble her chair back together and it was just the ticket for this problem.

She's a bit peaked today, but even with that, she looks a little tougher, don't you think?

Milestones A-Mundo

Wow. Another busy weekend. These graduations and birthdays have us hopping. This weekend we went to another nephew's graduation (I have a total of four graduating nephews this year, Two from high school and two from college.) In addition we had a birthday party for my mom.

Saturday's graduate was Jack, my sister Joni's son up in Petaluma. Joni's house is flat and it's the one house in my family that is easy for Maggie's wheelchair. She hardly gets to go to anything, because it's too far away, or too long or not accessible or something; but this one would work. It is about a 45 minute drive, but Steve drove and I sat in the back with Maggie. Since we had my mom and Tim with us, it was easy. We arrived and got Maggie into the house and went straight through to the back. They have an enormous back yard and the party was out there. The day before the party by brother in law put the finishing touches on the new deck, which looked great. Unfortunately, he decided to drop it down about a foot and now there was a two step drop outside. BUMMER. Maggie stayed inside for a bit and then we lifted her down to the deck. It was not difficult and this house is still the easiest of all of my siblings, but the ease of movement was gone.
Oh well, the party was great.

Joni had SOOOOO much food that she gave me a Caeser Salad to take home. I don't mean just a salad for dinner, I'm talking about a GIANT salad - she had two of them plus a ton of other food. I was hosting a brunch on Sunday and I could put that Caeser to good use. To give you an idea of the size of the thing, Steve and Tim and I had only salad for dinner on Saturday, I fed it to 16 people for brunch, four of us had it for dinner on Sunday and there's still a full sized bowl full left. It was delicious.

The brunch was in honor of my mother's birthday. It's a big one, but I won't publish her age here. Believe me when I tell you she doesn't look or act it; but it needed celebrating. My brother came up form LA with his wife, three of my sisters and their husbands and 6 of the 20 grandchildren came here for brunch. In a birthday miracle, the fog cleared long enough to enjoy the back deck for a while. It was a whirlwind fiesta but there was a lot of laughing, and loud talking. Maggie sort of checked out and just snoozed in the living room.

Pictures - above, the birthday girl is blowing out the candle on the LIME cheesecake that my sister Kate made from the gazillion limes in her garden. Oh MY, that was good. Below is me and Steve, my sister in law Dianne and the birthday girl. It was a fun afternoon.

Once everyone was gone, Steve took off on his bike for a few hours. Tim and Maggie and I kind of  lazed around and recovered. I am still in a bit of recovery mode, but today, Mom camp resumes. It is up to me to make sure Miss Maggie is entertained.  It's a drippy day out there, so we may have to do something indoorsy. Maggie is fine with that as long as the focus stays on her.  No more of this honoring others nonsense for her. It's back to Maggie as the Center of the Universe.

All is right with the world.