Travels with Maggie

This is from the way back machine.  I was reminiscing about this story with my mom the other day and was sure I had already shared it, but if I did I cannot locate it.

When Maggie was three years old, she was invited to go to Lourdes, France with the Knights of Malta. The Knights of Malta is an organization of Catholic men and women (Dames) whose mission is to serve the poor and the sick.  Every year the Knight of Malta take people on a pilgrimage to Lourdes to bathe in the healing waters.

For those of you who aren't familiar with Lourdes, it is a very sacred place for the Catholic Church. It is where the Blessed Mother appeared to Saint Bernadette several times over the course of a few weeks. Bernadette was a young girl but she convinced the local Bishops of the apparition and they built a huge cathedral. The waters of Lourdes are believed to have healing powers. People travel from all over the world to bathe in the waters of Lourdes. There are many miracles of healing associated with those who have visited Lourdes.

One doesn't really turn down an invitation to Lourdes. I mean, really, why would you? A week in the south of France having a once in a lifetime experience with the possibility of a miracle cure. Why yes, yes we will go and thank you very much.

When Maggie was little and did not have the trach and all of its required care, it was much easier to travel with her. She had a wheelchair, but she was just a tiny little girl what we could easily carry around. She sat in a car seat on the airplane and didn't require suctioning or oxygen or anything. We had never actually gone anywhere, though so this was -- well, a leap of faith, if you will. Maggie was very fragile, to be sure, but it was under control. I don't know if this is true in all of the chapters of the Knights of Malta, but many of the Knights and Dames from the Western part of the U.S. were doctors and nurses. That certainly made the decision to go a bit easier.

Steve was going to hold down the fort at home, caring for the boys while Maggie and I jetted off to France with 40 other "malades" (those who needed healing) and probably 50 Knights and Dames of Malta and their spouses.  Maggie was not miraculously cured at Lourdes, but I think I attained a new level of acceptance, which is a miracle in its own right. And I can tell you this: it was a week of pageantry and beauty and I consider it one of the most amazing things I have ever done.

I know there are many who would scoff at the whole idea of this and that's your right. Faith comes in all different forms. It is as simple or as complex as an individual chooses to make it. Some believe unconditionally, others scoff at the tenets and beliefs relying on science. Many are somewhere in the middle.

The best example of this came from Tim, who was just six years old when Maggie and I took this trip. He knew the story of Lourdes but he had a lot of questions, as you might imagine. He wanted to make certain I was considering all angles of this matter. We sat down to talk about things before I left and we had this conversation:
 Hey mom, you know how you are going to Lourdes to get a miracle?".
 Yes.
And you know how Lourdes is in France?
Yes.
If Maggie gets a miracle and learns how to talk, will she only speak FRENCH? (Sub text - Maybe you should head to Cleveland for your miracle)

Really, an excellent question.

I just smiled and said, "Don't worry Tim, if that happens we will all learn French."

And really, we have all been speaking Maggie's language ever since.

C'est bon.

.

Whirlwind escape

I ran away from home this weekend. Just for 24 hours. Maggie was in charge while I was gone. She runs this place like a Swiss train.

 I flew down to Burbank and watched my friend Elizabeth perform in the Expressing Motherhood show at the Banshee theater.  The show consisted of 12 mothers reading, or in some cases performing, a piece they wrote themselves about some aspect of motherhood. There were raucous laughs and some tears, there was unmitigated joy and seething anger just like motherhood itself. If you are in the area, the show goes again next weekend. It was a wonderful escape.

I went with my friend Janet who was already heading down there to visit her mom. We flew down at 2:30 pm leaving us about 90 minutes after we arrived before we were to meet a few others for an early dinner before the show. We went to a brand new mall that looked like Main Street in Disneyland. Dinner and the show were great, I met some new people and made instant connections and we sat together for the show. Afterward, Janet and I each headed to the homes of our respective brothers for the night.  I returned by noon on Saturday. I hadn't been to my brother's house in many years and had a great visit with him and my sister in law and niece before leaving there at 10:30 am to return the rental car, get on the plane, then the shuttle, then the BART train so that Steve could pick me up at Civic Center. It was an exhausting 24 hours, but a great break.

When I returned Maggie was happy to see me, but not for the reasons you would expect. I came in and she gave me a smile and waved and then immediately pointed to her nurse and beamed. She was over tho moon because her nurse Josephine was back after a month off. Steve said when they went to the park in the morning Maggie said on her talker. "Dad I am excited. Josephine coming to see Maggie." Steve said that's right Maggie and who else is coming home?"Eventually, Maggie threw me a bone and added me at the end of the sentence.  "Mom's coming."

It's nice to be missed.

Feasting in Feasterville

We are still basking in the enjoyment of our whirlwind trip back East. I wrote about our two days in New York, but the focus of our trip was a wedding in Feasterville PA.

 Manhattan and Feasterville could not be more different, so it was like two separate trips. Both great, I might add.

I doubt I could or would have made this trip at all if not for the wedding. We received the save the date card months ago. Since it was  a wedding the date was not going to change and that gave me the focus and the time to consider going, make the arrangements and actually get on the plane. And I'm so glad we did!

When you attend a wedding 3000 miles from home and you don't really know anyone and still have a blast, that's a great wedding. Janine, the bride, is the daughter of Steve's client and friend Joyce. I've actually only met both Janine and Joyce once before though we've communicated on the phone and by email often and I had never met Paul, the father of the bride or Mike, the groom. Didn't matter. We were treated like family from the outset and included in lots of festivities. 


When we arrived at our hotel there was a gift basket waiting for us. It was full of cookies and treats, kleenex and sundries etc. I thought that was so sweet and figured everyone staying at the hotel received one until I saw THIS shirt for Maggie in the back of the basket and realized this was done specifically for us. Maggie loves it!

The wedding itself was beautiful. Janine and Mike have been together a long time and the love and support in both the church and the reception was palpable. They are good people who love  their families, friends, community and  each other and the joy was infectious.

Janine is a special ed teacher (I told you she was cool) and had these key chains at each place. They were made by a group of students in an  Autism class taught by her friend.  In lieu of any wedding favor, the bride and groom made donations to Autism Cares and Special Olympics.

Are you starting to see why I love these people?

I hope Janine and Mike have a wonderful life together. If even a a fraction of the love and support we witnessed at the wedding continues to surround them, they will be set. And it will because of the people they are.

Sleepless in San Francisco

Very little sleep for me last night. I went to bed and fell asleep fairly quickly, but I woke up about 2 in a panic and never really went back to sleep after that. Why the panic? Was there a problem with Maggie? No. Did the nurse take ill? No. Were there burglars, raccoons, skunks or other invaders? no no and no. I was imagining everything that could go wrong when Steve and I go out of town later this month. I knew the worry would hit sooner or later and I'm glad it took so long to arrive, but it's here now. 


Travel has been out of the picture for us for some time. Taking Maggie with us is unthinkable and leaving her behind is a logistical nightmare. We took a couple of trips when Maggie was little and we could carry her with ease and change her diaper without causing a public spectacle. Now she's bigger and has the trach and requires constant care. Taking our show on the road is not manageable, enjoyable or the least bit relaxing for any of us. Leaving Maggie behind requires an incredible amount of planning and scheduling of nurses, visitors etc so that Maggie is not completely bored while we are gone. It is expensive because we have to pay for the extra nursing shift out of pocket in addition to whatever travel expenses there are. It is easier to stay home and that's what we do. 


But every once in a while, you just have to make plans and go. In the 18.5 years of Maggie's life, we have gone away for a single night together twice. Last year we threw caution to the wind and went for two nights for our 25th anniversary. We were just up the coast and could drive home in 3 hours if necessary - and it almost was. One of the nurses was hospitalized and I spent about 4 hours of our 48 hour getaway frantically calling every nurse on the list to get a replacement. I managed to pull it off, but only because one of the nurses took pity on us. 

This year we are going for it. We are actually boarding a plane and heading to New York City and then to Philadelphia to attend a wedding. Steve and I have not been on an airplane alone together since 1989. That is 23 years ago - before the existence of Homeland Security or the TSA. You could bound onto the plane with shoes intact. I think it's time we tried this. We will be gone four nights and five days. I am really looking forward to it and I am  scared out of my wits at the same time. 


I have spent the last month or so working on this. I asked for and received approval for the cost of the additional nursing hours, so the cost is just the travel. I have been working on scheduling nurses with the admonition that they cannot cancel or get sick. The first layer of coverage is in place and now I have to work on a safety net - or an "on call" layer in case a nurse gets sick or injured.  I have to lay in supplies and medications and make sure Maggie gets out a little bit while we are gone. Tim will be here, and he will be a huge help keeping Maggie happy, but we will NOT be able to turn around and come home if something happens. 

Nothing will happen. Nothing will happen, Nothing will happen. Nothing will happen. 


I don't think sleep is in the cards for July. 

Today we say Auf Wiedersehen to Vanya and Betty. Their stay has come to an end and they are headed back to Germany this evening. It has been a great three weeks and I'm glad they stayed with us.

Betty asked if Maggie could come to Germany when the San Francisco kids come in May. I wish that could happen, but it's just not possible. (But I am giggling at the thought of going through TSA security with the suction machine and the cans and cans of her food pleading ,"No, really sir, she needs more than 6 ounces of liquid for the 10 hour flight."  I think I would suspect us because it's too ludicrous to be true. )

The morning madness will settle back to its normal overdrive level. We have been in super duper overdrive adding lunches and a ride across town to the already unbelievable mix. The other day I was making lunches and maggie was banging on her bed  which is her way of "calling" me. I said, "just one minute Maggie. you are NEXT on my list." I heard the night nurse start to laugh because Maggie made a face. The nurse said, "oh no, she did NOT like that. This girl needs to be FIRST on every list."

Other than the mornings, though this has been fairly effortless. We were lucky to get such lovely your women to join us because they made it so easy.  

We will miss them and wish both young ladies well as they travel home to their families and friends. I hope they know they have a little of both right here in San Francisco if they ever want to.

Graduation

Another cousin graduates from high school today, and once again Maggie and I are staying home. It is hard to miss so many family milestones, but we have to do what we can with what we have.

Remarkably this is the only graduation in the extended family this year. There have been as many as 6 graduations from various levels of education in past years, so having just one is amazing.  The next generation in our family is big. There are a total of 24 "kids" on both sides of the family. Those "kids" range in age from 15 to 36, so we are nearing the end of the high school years. Mike, who finishes today is #20 out of 24. They don't get any less exciting or important, though.

Of all the levels, I love high school graduations the most. It is such a milestone. Don't get me wrong, college graduation is an amazing feat but high school is something special. It is the end of childhood. Often it is celebrated with friends with whom you have spent your childhood, those you you will be leaving behind as you move on to college, perhaps in a different city of state. The kids know it's a big deal, but they can't really grasp the significance until they look back on it years later.

It can be bittersweet for the parents because they do know what an important step it is. The little bird is ready to fly and though they might not want them to leave the nest they are full of pride at reaching the threshold. Parents know, though that even the best little bird might need a little help flying and their job is not done - not by a long shot. My poor boys will be sending their own kids off to college and I will still think of them as little kids.  

Steve picked up his dad and Mike's grandmother Sally (beautiful name) and is heading up to his sister Marie's house in Mt. Shasta. They will attend the ceremony and the party following and come back on Sunday.   Since travelling is just out of the question for Maggie we are staying here sending out congratulations to Mike and to his mom and dad too. Well done, all of you.

Wish we could be there.

Graduation

Eddie and his girlfriend Grace

We survived graduation weekend. Maggie survived the weekend without us. I am exhausted, but very happy we went. 

Eddie had an entourage in town to join in the festivities. There were 11 of us for dinner on Friday and 15 for lunch following the graduation. We went to an Irish Pub for lunch and the food and service were both excellent. The menu was hilarious with various Irish dishes, real (Sheperds' Pie) or invented (Irish egg rolls). Steve felt compelled to order the "Scotch Eggs" which are hard boiled eggs rolled in sausage and then deep fried.It sounded like something that would stop your heart immediately. I tried a bite. Not delicious, but not as disgusting as it sounds, either.

The highlights - well, graduation itself, of course. My mother wearing all silver jewelry because she was in Nevada, the Silver state, and putting Grace's parents, who we just met, through the acid test of an outing with our family. 

 

Missing the Pomp because of the Circumstances

At a time when I should be beaming with pride, I am nervous and sad. Eddie is graduating from college on Saturday and we are going to be there to witness this with our own eyes.  I'm scurrying around getting things in place for my 48 hours away. Yes, for only the second time in her life, we are leaving Maggie for two nights. She will stay home with the nurses and Steve and I will head up to Reno for the graduation.

I am very proud of Eddie, but that pride is clouded somewhat. I wish Maggie could come with us and tried everything possible to make that work. This is an important family milestone and she has to miss it. That makes me incredibly sad.

The amount of equipment we would have to bring is daunting. Oxygen, nebulizer, suction, compressor, trach collars, 12 different meds,  feeding tubes. diaper, catheters, food, etc etc etc.  Plus we would have to bring a nurse to cover some of the time or Steve and I would be on duty 48 hours straight. We have to at least be awake enough to see Eddie in his cap and gown. I was in the midst of arranging all that when the reality of 20 degree weather stopped me, well, cold. Maggie has never been in weather that cold and she is especially fragile this time of year. Besides, if they get a snowstorm how would we flatlanders ever be able to maneuver the wheelchair. Maggie will be more comfortable at home. But it still makes me sad.

I switched gears and hired nurses to fill the extra time that I usually cover. All are her regular nurses, so they know what to do. My neighbor Debbie, who is also a nurse, agreed to be an emergency contact for simple things. Obviously anything big and they have to call 911. Right after that they have to call me. There will be multiple phone calls, but I hope they are all coming from me checking in.

 I made a flight reservation home for Saturday night in case there are any problems. If all is cool I won't use it, but I will drive home with Steve on Sunday. Flying is not really any faster when you consider the security check in time. But in the event the roads close I need to know I can get out. It takes about four hours to drive without being slowed by snow or traffic - both of which are very likely. Reno is not the problem, weather wise, it's getting TO Reno. We have to cross the Sierras and that means going over elevation exceeding 7000 feet before heading back down the other side of the mountains.

Maggie will be fine. She will be mad at me when I get back, but she will be fine. This weekend is about Eddie.

Can somebody shut her up?

A couple of weeks ago I referred to the moment when I found my voice as a parent and advocate for Maggie.  A couple of people asked when that was. I could have sworn I already told this story, but I looked through my archives and did not see it. My “filing” system is terrible, though, and I may have missed it. If this is a repeat, I apologize.

Maggie spent the first three months of her life in the hospital and then was in and out most of the next two years.  I was at her side every possible moment and did not realize how much I was absorbing and learning about medicine and Maggie.  Sometime during that first summer, when Maggie was about 5 months old, we took all three kids to Lake Tahoe. My parents had a place up there and it was a relatively easy vacation.

Maggie has always had a feeding tube. Today it is a “button” to which I attach the tube when she needs to eat.  Then, however, it was just a long tube. Of all the things going on with her, this was the least dramatic. Her respiratory and other issues were more pressing.  Accordingly, I received very little instruction regarding this tube, had no idea that it could fall out and did not have any replacement. Of course, it fell out while we were in Tahoe.  I did know that you had to get something in there immediately or the hole would start to close and she would have to undergo another surgery to reopen it.

 My parents were out to dinner so we just packed the three kids into the car and drove 7 miles to the urgent care center in Tahoe City, a town of about 2,000 people. Believe it or not, Tahoe City is not known for innovative medical care. The doctor took one look and said we had to go to the ER in Truckee, a town of perhaps 10,000, another 14 miles away. Off we went.

Needless to say, the Truckee hospital did not get too many feeding tube issues either. They wanted to send us to Reno about 45 minutes to the east or to Sacramento about 100 miles west. That was ridiculous. I did not know much about the tube, but I just knew in my heart that it did not warrant any more car trips or any more delay. I said, “No. This is easy and we can do it here.” The doctor looked at me as if I was crazy. I said just stick a tube in there, anything; we have to keep the hole opened. He was clearly not comfortable with that at all.

I gave him Dr. DeLorimier’s phone number. Dr. DeLorimier was a world-class surgeon who had already operated on Maggie 5 or 6 times in the few months she had been on earth. The kind Truckee doctor said, “Wow, he’s famous.” I said, “Yes, he is. Please call him.”  By the grace of God, Dr. DeLorimier was on call that night and talked to the Truckee doc. When the doctor came back into the room, he looked perplexed.

“What did he say?” I asked politely.

The doctor looked me in the eye and said, “He said to do whatever you say.”

I (smiled to myself and) said, “Good, let’s get to work.”     

That was the moment. I just KNEW this was not that big of a deal and having this famous surgeon back me up to another doctor was the icing on the cake.  I trusted my instincts and they paid off, and I have trusted them ever since. I found my voice and have not shut up since. .

Just to finish the story - In five minutes, Maggie had a new tube. The doctor, now fascinated with her story, was asking all sorts of questions like “what else is wrong with her?”

All this time Steve had been entertaining the boys who were 4 and 6 years old.  They went for Ice cream and got toys to keep them entertained in the waiting room. When Maggie and I were finished, Steve was reading a real estate magazine because it was the only thing available.  Steve, who had no idea what had gone on in the exam room, said, "Did you know you can buy a 4 bedroom, 3 bath house here for $160,000?"*  I just looked at him and said, "Unless you want to buy me a helicopter to get Maggie back and forth to UCSF, I am NOT moving here."

*remember this is 16 years ago. Couldn’t do that now. Wish I’d listened to him then…

I forgot my thankfuls yesterday.

November 8, thankful for my brother Pat, who has a birthday today. He always makes me laugh.

November 9.  Thankful for a clear crisp morning, and a beautiful walk on ocean beach with a friend and our dogs.

Today, thankful for Irish pubs, which are the same everywhere, and for making arrangements to host Eddie’s graduation party at one in Reno.

Mayrose

When I was preparing to go to college, my father was concerned about my heading off to UCLA. He wanted me in a smaller school, preferably Catholic. He knew I wouldn’t go for that, so he suggested I consider going to University of California in Berkeley (Cal) and live at home. The commute was easily done, I could drive from my house across the Bay Bridge or take BART (rapid Transit) to Berkeley in about 30 minutes, and I could live at home for nothing. It was a futile attempt and he knew it. That was not attractive to me. I was looking forward to being out on my own and I wanted to go away. My older three siblings had all gone away and now it was my turn. Of course, each of them had attended relatively small Catholic colleges and I was headed to a (gasp) public school with over 30,000 students. Cal was also a huge public school, but if I stayed at home, he could keep a closer eye on me. I knew that too and that was part of the reason I wanted to go away. : )


My aunt Mayrose faced a similar issue 40 years earlier. In the late 1930’s a college education was not accessible for many people, and for a WOMAN, even less so. However, my grandfather encouraged his kids to excel at everything they did. Mayrose was smart and she applied, was accepted and wanted to go to Cal. Various priests apparently spoke to my grandfather about how much more appropriate it would be for Mayrose to attend the local girls Catholic college, but that was not to be. She knew what she wanted and went after it. She went to Berkeley during the depression, and lived at home with her dad, five younger siblings and two aunts who moved in to help care for the family following her mother’s death a year or two earlier. That right there might be enough to make a young woman stray off course, but not Mayrose.

She commuted to Cal every day and her commute was not quite the same thing I would have faced. The Bay Bridge was completed right around the time she would have started college, but people did not have cars the way they do now. You did not just hop on the Bridge and drive over there, and there was certainly no rapid transit. She would walk to the streetcar, ride all the way downtown to the Ferry Building, cross the bay on the Ferry and then take a train up to the campus. The trip had to take a couple of hours each way. She did this until she graduated because that is what she had to do to get what she wanted.

Like many of the women in my family, Mayrose had many different names. In fact, only the San Francisco contingent calls her Mayrose, her given name. Her siblings referred to her as “sis” and everyone in Seattle simply called her “Casey”. Jim, One of my SF cousins was up in Seattle last week and as soon as she heard him say “Hi, Mayrose” she perked up because that meant it was someone from San Francisco. She loved San Francisco and as her daughter Peg told me, she left a big part of herself here when she moved away. In the last few years, she has had difficulty with short-term memory and though she has been in Seattle surrounded by her loving family for about 70 years, it was the early days in San Francisco that she could converse about easiest.

I have not seen Mayrose in a very long time. She was the only one of the Casey siblings to move away from the San Francisco area. She met Uncle Fred during World War II and moved to Seattle where they raised a huge family and had a great and happy life. I have not been able to travel since Maggie was born, and her travels were getting restricted by age. The last time I saw her was nearly five years ago when she came down with a bunch of her kids and grandkids for a family reunion.

Mayrose passed away over the weekend at 90 years of age. She was feisty until the end, and leaves kids, grandkids and great grandkids to mourn her. Though she has not seen many of us in a while, she also leaves her extended family in San Francisco and beyond. I have always admired her spirit and independence. Her granddaughter summed it up well on face book, where she wrote: “In loving memory of Casey Baisch, may everyone be lucky enough to have a kick-ass woman like this in their lives.”

Could not have said it better myself. Women like her made it easier for women like me to follow our dreams 30 years later.

Can't Get There From Here

My freedom is directly linked to the length of Maggie's school day. I have to have all my errands and fun done by 3:00 PM every day. Once she gets home I have to be here. Yes, we have a nurse here but Maggie is a two person job these days. Once she gets home and we get her out of her chair and settled, I can get out for about an hour or so, but I have to be back in time for the next transition to the chair or next procedure. It's a drag, but generally it works.

Once in a while I try something very ambitious and push the envelope a bit. I made plans to go to Sacramento today, which is almost two hours from here. I can take care of things there and be back here by 3(ish). Ambitious, but do-able. Of course that means everything has to go right.

Getting in and out of San Francisco means you have to cross a Bridge. And the fastest way to get to Sacramento is across the Bay Bridge. Because of a stupid accident on Tuesday, the Bridge is closed. That means the 100,000 + cars that use it every day have to find some other way to get into and out of the city.

When I say the accident was stupid, I mean just that. A repair done over Labor Day weekend failed and a 5000 lb chunk of steel fell from the top of the bridge. Horrible, but amazingly only one person was just slightly hurt. The reason it fell? The engineers forgot to account for the vibration of the bridge.

Really? An 8 mile stretch of roadway suspended high over the San Francisco Bay with howling winds and thousands of cars trucks and buses crossing it every day might vibrate? In earthquake county? Who knew? Sheesh! I can feel that thing vibrating when I'm sitting in my car. And I was and English major.

I almost cancelled my trip because the excess time makes this ambitious trip impossible to complete. We have to go north across the Golden Gate to get East to Sacramento. So does everyone else, and it will be S L O W going. But I need to get up there. Steve can't come home early because he has some hearing. I called around and made arrangements to have someone here, but I'm not 100% confident that will happen. I told the nurse even if all that falls through and I''m an hour late, Maggie will be fine just sitting in her chair.

Wish me luck!

Going for it

This weekend is the collegiate National Mountain Bike championships. (http://www.usacycling.org/news/user/story.php?id=4491) This year it is hosted by the University of Nevada Cycling team and my son Eddie (pictured above) is the president of that team. He has been working on this for months. Hosting the Nationals means finding a venue and submitting a bid to USA Cycling for consideration. There are nothing but mountains surrounding Reno, so there were several venues to consider. The races will take place at Northstar at Tahoe, best known as a ski resort. Eddie and the rest of the Nevada Cycling team has been working with both Northstar and USACycling to make this event work. It has been an education for him, that's for sure.

Northstar uses the ski lifts and trails for bikers in the summer months. The lifts close the first week of October, because the weather is so unpredictable after that. Thia is a win win for Northstar. They get to host the event without disrupting any business. But Snow or pouring rain (like it is right now) could kill the event. This storm is supposed to blow right through and the forecast is for clear skies. The event should go on as planned, which is great. This has been a ton of work for Eddie and he would be crushed if it didn’t happen.

Northstar at Tahoe is about 3.5 hours from here. Originally we planned to take Tim and Maggie up there to support Eddie and his team. I was worried about taking Maggie because of the altitude.(6500 ft) Also, I’m not sure how we would be able to watch a downhill race on the side of a mountain with a wheelchair. Undoubtedly I would spend the entire weekend in the condo. Sigh.

Tim then announced he could not go. He had to take last weekend off work because of his wisdom teeth extraction and cannot get another weekend off.

Hmmm. Tim will be here…..do we dare go without Maggie?

In the 15.5 years that Maggie has been on this earth, Steve and I have NEVER gone away together for two nights. NEVER. In fact, we have gone for one night only two or three times in all those years. There is so much to organize and arrange, it hardly seems worth it.

This time taking Maggie with us might be more work than leaving her home. I called to get some portable equipment for travel and was told the (giant) equipment I have IS portable. Unhh. We would have to bring the mister, the nebulizer, the suction, the oxygen, all the supplies for feeding and diapering, tubes to make all those machines work and all the medications. In addition I would have to be the nurse for 48 hours straight, and there is still the high altitude and logistical problems to worry about. Hmmmm.

So we’re doing it! We’re leaving Maggie here. The way this all sort of fell into place makes me pay attention. I have to give it a try. Besides, if Eddie can talke his life in his hands to speeed down a mountain, I can do this. I arranged for two additional nursing shifts that I will pay for out of pocket. Tim will be in and out and can keep Maggie from worrying.

Of course, I’m not sure who will keep me from worrying,

Dance of Joy

I like to think of myself as interested in and open to new things. And I am, really. But as the last days of summer fall away, I find myself craving the predictability and schedule of the school year. I can organize myself, and my day when I know Maggie will be in school. In fact I did a very brief version of the Dance of Joy when the school bus door closed. It was brief because I haven't slept in two nights.

We did go on our little adventure up the coast. It was beautiful, but exhausting. Maggie's health issues were there and added a little more to our already busy schedule. She really did ok, but we kept on top of it. Maggie needs something done every second and digging through the multiple bags of supplies to find the needed item was frustrating. At home things are arranged and organized - ok, maybe not organiazed, but we know where things are. We can do things alot more efficiently. Maggie was very excited to sleep with us and could not settle down. Steve handled the first part of the night and I did the second. Neither of us slept much and I was lucky enough to have the oxygen and suction tubing going over my body all night. But waking up to see the Pacific ocean and the cliffs of Mendocino county was not too shabby. This was the view from our room.

Even lying awake is restful when you're looking at that.

Restful yes - but a night's sleep is a nights' sleep. The new nursing arrangement started last night and I was looking forward to the nurse arriving so I could fall into bed. But in a cruel twist of fate: SHE DIDN'T SHOW UP!!! No Call, no nothing. ARRGH! So I was up all night again last night. I did sleep in the lounge chair in her room for about an hour so I am areally ready to rock and roll today. Actually, I think I'll hit the hay right now. Don't call.

Planning what?

We decided to take a short road trip. Just the three of us, Maggie, Steve and I. The boys are off to school so they're not invited. We have not taken Maggie anywhere overnight in at least two years. She's either been too sick or it's been too much trouble to organize. But this weekend is different. Maggie has been healthy - complicated, but healthy. It's time to give it a try.


These plans were made about a month ago, shortly after we learned that our nursing agency was abandoning Maggie as a patient. They gave us 30 days, which ends tomorrow. Hence, tonight is the last nursing shift. Since we weren't going to have nursing anyway and I was going to be up all night every night for the rest of my life, might as well go somewhere. I can miss out on sleep anywhere. Since then we have been working with golden Gate Regional Center to find another way to handle the nursing. Of course it means thousands of dollars and a ton of work for me, but at least I can sleep at night. We have nurses starting under the new system on Sunday. That still leaves 36 hours without nursing, so we planned the trip. We have learned to squeeze alot of entertainment into very short periods of time.


We're leaving at 6am tomorrow, when the night nurse leaves. Or at least we are supposed to. As if on cue, Maggie's having some trouble today and I believe I will be spending the day at UCSF Urgent care. I cold take her to the ER right now, but I know from expericnce that they will send us over to wait for urgent care to open. (Perhaps it should be - NOT THAT URGENT care. ) You may think I'm inattentive typing this while I'm on alert for a dash to the hospital. But I have learned. Thousands of days in the hospital have taught me when to observe and when to rush. Relax. We are in observation mode and I can see her from here. The osygen is on and she's improving, so this may be nothing - but I suspect she's developing pneumonia. Pneumonia is serious and Maggie has had it at least 50 times. At least. Every single time is scary, though.

You know the fear doesn't change. The experience of handling emergency after emergency teaches us how to handle a lot of things, and people often marvel at our ability to deal with these crises. We don't have a choice, so we do what we have to. Experience has also taught me that observation mode can change in a heartbeat. So we are always scared.


My antenna is up and plans for our mini vacation are up in the air. Maybe I'm wrong and we will go after all. Maybe I'm not and she'll be admitted. If that's the case I hope we at least get a room with a view.