To All the Ships at Sea

There is a certain sound my computer makes just as it crashes. It is different from the other dings and alerts I usually get. This single, loud, somewhat prolonged “beep” is generally followed by a blue screen.  Obviously, it is not a pleasing sound.

On Wednesday night before Thanksgiving, Maggie’s talker was making that noise. There was no blue screen, but something was clearly wrong.  Because I am such a techie, I went right to work. I looked at the device, turned it over and turned it off and back on. If that did not work, I was lost. It did not. The talker came back on fine, but there was some weird code on the screen. All the icons were there, but instead of the words describing what they were, there were just lines. This was new, different, and more than a little troubling.

The thought of a four-day weekend without Maggie’s dynavox was daunting indeed. This is her lifeline. It’s not only how she communicates, but it’s how she keeps herself entertained for hours on end. With the long weekend looming, I could not (or would not) contact anyone to trouble shoot.   I took it down, turned it off and put it on the charger hoping it would be magically fixed overnight.

It was not. Thanksgiving morning brought more of the same loud protracted beeps every time she hit the switch. I touched one of the icons on the screen and it did not beep. Hmmm. Perhaps it is something with the switches. Could it just be on some strange setting?

In order for Maggie to access her dynavox with the switches, it has to be set on “two switch” and “scanning.”  Periodically the scanning setting defaults back to a different setting and the switches will not work. I can just fix that but this was different. This sound was something I have never heard before.

There are different settings possible for different types of users. Most users just press the icons on the screen, so the default setting is “touch enter.” There are several others but I have never really looked at them because Maggie does not use them. When I went into the settings pages I expected to see the default “touch enter” setting. I could fix that and then deal with the beeps next.

Much to my surprise, it was not on the default at all. Rather, the setting was on “MORSE CODE.” Suddenly the beeps made sense and so did the strange lines on the icons. Maggie was communicating in Morse code.  I have no idea how that happened and did not even know it was available. There is a chance that Maggie got in there herself and randomly changed it. She looked quite pleased with herself as Steve and I figured it out.

We live about three miles from the Pacific Ocean. Hopefully she wasn’t sending any distress calls out into the night. 

Connected cousins

The holiday was great. Thanksgiving dinner was at my moms'  We were a relatively small number (14)  for dinner this year. If everybody is there, which rarely happens, we are about 40. Exactly 1/2 of the 20 grandchildren were present at my mom's for some of the day on Thanksgiving. Here she is posing with nine of them. (Note my son Tim in the back with the beard. You wouldn't know he's 6'1" tall in this crowd)

 It was just the "girls"  this year.  That's me and my four sisters and our families. My sister Ellen and her  family had to go to her inlaws for dinner but they were there for the appetizers.  Joan's entire family was there, but Kate, Mary and I were missing a kid (or two, in Kate's case) who could not make it home for the Holiday. My two brothers did not come. My younger brother and his wife went to Lake Tahoe. Their daughter is away at school and finals are next week so she didn't come home. Happily, though, she is in school in Los Angeles, where my older brother lives. She went  to her uncle's  house because he was staying in LA with his wife.

The picture above shows only 9 of the 10 grandchildren who were there. Mary arrived after Ellen and her family left so Patrick was missing from the picture. There are a couple of reasons for this. Mary and her family come from the farthest distance, about 2.5 hours away. More importantly, her son Patrick operates best on a shorter time frame. Holidays with all - or even half - the cousins can be extremely overwhelming for anybody, but especially for Patrick. Patrick is 25 and autistic. He lives in a group home and comes home to see his parents every other weekend and on Holidays. 

Patrick sat next to me at dinner. He kept saying hello to Maggie in his very quiet voice and she would laugh uproariously every time she heard it.  These two cousins have a special bond; or maybe all of us have just decided they have a bond because they are both profoundly disabled, albeit in completely different ways. I think it's the former, though. There is a kinship there. 

I was happy to get this picture of the two of them together, both smiling and actually looking at one of the cameras.(There were several. Patrick and Maggie had to deal with the paparazzi.) Usually there are too many people floating here and there, or one of the two of them is absent from the party because of illness or schedule. Not this time.  

We have a lot to be thankful for.. 

Thanksgiving

It's Thanksgiving eve and I'm about to make stuffing. I started out November swearing to list something I am thankful for every day. I failed miserably at keeping the list, but the thankfulness is there nonetheless.

I am thankful Maggie is healthy today and pray she will stay that way for a while.
I am thankful for my husband and his strange sense of humor.
I am thankful Tim just called me and he is 1/2 way home and was out of the snowy, icy mountains before dark
I am thankful Eddie is about to graduate from college and has unlimited opportunity at his feet.
I am thankful that Eddie is spending Thanksgiving with his girlfriend Grace, even though I will miss having him here.
I am thankful I live where "cold" is 48 degrees
I am thankful for my friends from all different parts of my life.
I am thankful for my sisters, brothers and their families.
I am thankful for my mom.
I am thankful I had my dad for so long and miss him very much.
I am thankful for my brave father in law facing the first holidays after losing my mother in law.
I am thankful for the nurses in the house who allow me to live at least a semblance of a normal life
I am actually thankful my life isn't that normal so I can be thankful for the smallest things.
...and I'm thankful the turkey fits in the pan

Happy Thanksgiving all!

It Takes a Village

According to facebook, it is Special Education week. Or it was last week. Or it was two months ago and I’ve only just received word. Whenever it is or was, it exists because facebook deems it so. With the bazillion users on facebook, consciousness can be raised, and that is a good thing. Even though I did not put the bizarre message in my facebook status about special ed kids not being contagious (what!?!) and only seeking acceptance, I applaud the attempt acknowledge this population. 

It is not just the special education students who should be acknowledged, but also the whole special ed world. It is teachers, paraprofessionals, nurses, administrators, therapists and the bus drivers.  It really “takes a village,” and when it works, special ed is that village.  

I know many parents have terrible experiences in the special education world because there are not enough resources to give every child they program they should have. Many parents end up fighting school districts to get the services their child needs. Unbelievable amounts of time, effort and money are wasted in these fights.  If those resources could be directed into the education programs instead of to the fighting, a lot of the issues would be resolved.  There are unreasonable parties on both sides. Some districts simply refuse to make even the slightest attempt to comply with the letter or spirit of the law. Some parents are wrapped up in the fight and forget what their fighting for.  This is not the majority of districts or parents, but many perceptions are based on this minority.  This is not to say things don’t need improving – they do. There are huge issues with unfunded federal mandates regarding education. It school districts are required to do things, they have to get the funding to do it. Funding or not, though. districts need to embrace the concepts and ideals of special education if it is going to work. It can work and it can work well. Maggie is a perfect example of that.

Obviously, we are big supporters of Special Education in this house.  Maggie would not have the success she does without it. I could have instructed my boys in arithmetic, English, spelling etc. They would not be as thoroughly trained as they were by going to school, of course, but we could have muddled through. I could not have done that with Maggie, though, no way. I would not have had any idea where to start.

Maggie’s education started when she was about six months old. Her first teacher was Jeri Hart, from the Blind Babies foundation. She saw Maggie potential immediately and showed me what to look for.  Vision is a huge part of early learning for babies and when vision is impaired, as it is with Maggie, some of the developmental markers will appear to be missing when in fact those markers are dependent on vision. I learned to advocate that point for Maggie immediately.  That prevented Maggie from being mis labeled early on, and kept the door open for learning.

 Maggie started an infant program including physical, occupational and speech therapy. All of those disciplines worked together to lay the foundation for the building blocks of education yet to come. I did everything they said to do, but I had no idea what was going on or why any of it mattered. Frankly, I went to all these appointments to ease the isolation of this new life I found myself living.  I  did not know that learning to reach for switch toys was a crucial first step in her communication.

Maggie started pre-school when she was three. I was supposed to put my medically fragile three-year-old child on a school bus. Right. That just was not going to happen. As fate would have it, just before school started, I participated in a parent panel presenting to the bus drivers at the bus company. The other parents had complaints about busses being late etc. Maggie had not started yet and I told them I was scared to death. I learned then that the bus drivers take a great interest in the special ed kids they drive and worry about their well-being. I met the guy who would be picking up Maggie and many of my fears melted away (Ok, I did ride the bus with her for a while until they put a nurse on the bus.)

From the infant program to high school, Maggie has had great teachers, great classes, and great staff and has achieved tremendous success because of the entire village.

 Tomorrow I will show you some of the “Village People”

Who's the Boz?

Maggie did have to go to urgent care on Friday. We spent over three hours at UCSF but we got a lot done. She had a chest xray, a flu shot, a respiratory treatment, some steroids and two prescriptions. She was sicker than I thought. The chest xray was not terrible, but it was not clear either.They said "maybe" a viral pneumonia, but definitely a sick girl.

 Getting the xray is always a chore, but I have to say today went fairly smoothly. The woman in charge was helpful, knowledgeable and actually listened to my concerns.

 As always I donned my lead apron to ward off the radiation and helped hold Maggie in the various positions.
When they do the lateral view I'm supposed to hold her hands over her head while she leans forward in the chair.  This is extremely difficult. Maggie has difficulty lifting both hands over her head at once and if she doesn't want to do it, you cannot believe the strength she has to fight it.

 I used her favorite song against her.We listened to Beyonce sing that song about 20 times today, so I know exactly when she would react. I waited for the right moment and said
"All the single ladies, put your hands UP".
She did. I grabbed them and they got the picture. The picture was clear, but the lungs were not.

Incidentally earlier in the day we were putting various tunes on the Ipod. Maggie actually let me play a different set list. I heard the song linked below and tried to explain to her that this was my high school song. This was my "single ladies." She smiled sympathetically, much as I did to my parents as they tried to convince me how great Glenn Miller and Tommy Dorsey were. Turns out they had a point. Perhaps Maggie will see the light one day too.

For all the St. Rose girls out there, here's Boz Scaggs doing Dinah Flo

http://www.youtube.com/watch?v=bBMltO6yvog&playnext=1&list=PL2E0DF64D49EA0179&index=13


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Sick Sense of Humor

Maggie is under the weather. You can tell by looking at her. She has been fighting off the blahs for several days and it finally caught up to her. Hopefully it is only a cold, but Maggie’s system is so sensitive that any disruption in the force sends her into a tailspin. I have called the doctor, but I do not think we need to go unless she gets worse.

Right now, I have her hooked up to the oxygen because she keeps fading away without it. It is like gas in the tank. It is exactly like gas in the tank. The problem is when the oxygen works its magic, Maggie’s energy comes back and then she yanks the oxygen tubing off, which causes her to fade again. We will play this game all day. It is not particularly fun.

This morning Steve was running around looking for nail clippers because Maggie had a broken fingernail. He went upstairs grumbling when he could not find them in Maggie’s room. While he was up there I just fixed the issue with my hand.

Ok, alright, I pulled it off.  If it were on my hand, I would have done that. You would too, be honest.

Steve came back down the stairs and I said I already took care of it.  He said you didn’t yank it off did you? I smiled and nodded. He jokingly chastised me a bit saying you are not supposed to do that.  I teased him back that he would have us head to the ICU for a broken fingernail.    Maggie just listened with a weak smile on her face.

As Steve was leaving for work, he told Maggie to feel better. He asked where it hurt and she pointed to her throat area. He said “Anywhere else?” She looked very tired and reacted in slow motion. Eventually she grabbed her finger with the now repaired nail and gave a sly grin.  Steve gave me a look of (mock) disapproval.

She may be feeling ill, she may be a bit weak, but her teenage attitude and sense of humor are just fine, thank you.

NPR Story

This story on NPR involves now 21 year old Olivia Welter from Illinois, who has issues similar to Maggie's. She sounds healthier than Maggie, but more physically involved. This story about her home care is almost exactly what we deal with in California. The "Katie Beckett" waiver is handled slightly differently by each state. I have no idea if the California version expires at age 21 as the Illinois version does. But you better believe I'm going to find out. Maggie will be 17 in March.

This is a balanced story about technological advancement, mortality, cost, budget constraints, and the reality of cutbacks on the most vulnerable members of society and their families..

 You can hear the story at the NPR website.

http://www.npr.org/player/v2/mediaPlayer.html?action=1&t=1&islist=false&id=131145660&m=131168874

The war on (or for) drugs

Maggie is back on the regular antibiotic. This is a regimen now - four weeks on, four weeks off. The "on" was supposed to start at the end of the week, but the doctor said to start it early because Maggie has been below par for about a week. Hopefully the early start will help her fight off any bacterial infection that may come a calllin'.

The drug is inhaled tobrimyacin (Tobi) delivered via nebulizer. (one of four nebulized medications she's on) It takes about 30 minutes to finish the dose and she has to have it twice a day. This is a powerful drug. Since it is delivered via nebulizer the fine mist is all over the room. The nurses have to wear masks while they deliver it. I'm not positive if that's because of potential allergy or too much exposure or both, but that's the protocol and we follow it. 

Tobi is high end stuff and it's ridiculously expensive. The drug store doesn't keep it in stock and they don't even order it until the insurance has approved it. This prescription was approved six months ago, but it had to be applied to the the new insurance with the same company. I picked it up yesterday without delay. Generally the label shows only the co-pay, which is then covered by medi-cal.  For some reason that part wasn't done yesterday and the label had the full price on it.  The clerk looked at it and said to me, "Oh, what do you want to do with this?" I glanced down and saw the price:

$4,890.09. 

 I smiled, patted my empty pockets and said, "well, I certainly don't want to pay it."  She looked confused and I suggested she find out if the coverage went through. I knew it had or it wouldn't have been ready for me. Paperwork fixed. No problem. 

As I walked back to the car I looked down at the bag in wonder. How can this POSSIBLY be that expensive? And what do families do who don't have insurance or medi-cal?

I don't even want to think about that because I think I know the answer.

Something is very wrong with this.

I'll take crazy mothers for 100, Alex

My post yesterday elicited many responses. A few people mentioned Munchausen Syndrome – or more specifically Munchausen syndrome by proxyThis is a rare but serious mental disorder where the parent – usually a mom – is deliberately MAKING their child sick to garner attention from the doctors. What I referred to yesterday stopped at exaggeration. I am not aware of anyone who has actually hurt their child.

There is nothing funny about Munchausen by proxy, but the term reminded me of a story. 


Really?! How very unusual.

There was a particularly bad period several years ago. Maggie must have had 10 shunt surgeries within three months. Maggie has hydrocephalus, a buildup of fluid on the brain. There is a shunt – or a tube – in her head to take the fluid off the brain and drain it to other parts of the body. Sometimes the shunt gets clogged, or breaks or gets infected. The only repair is surgical. When it is infected, the treatment involves two surgeries, 10 days apart, one to externalize the shunt and one to replace it, once the infection clears. During the 10 days, Maggie is in the intensive care unit with the shunt coming out of her head draining the fluid. Sometimes these things happened in bunches, but this period was horrific. She had repeated broken or clogged shunts, and at least three infections. She would come home for a day or so and then show signs of infection again and back into the hospital, we would go. 

If you think you can imagine the worry and fatigue we were under you are wrong. Triple whatever you are thinking and you are about halfway there. It was bad. You cannot concentrate on anything. You cannot read a book, you cannot finish an article in the newspaper, you sleep in two-hour spurts and you get more than a little rummy. I found things like People magazine to be enthralling. A one-page article about some celebrity was about the limit of my comprehension. 

Maggie was in surgery (again) and I was reading an article in People about a woman in Florida who had Munchausen by Proxy. She had been harming her child using the gastrostomy tube and catheters to put nasty things into her child’s body. I thought to myself, wow! Maggie has both of those things. Then I read that those with Munchausen by Proxy tend to be knowledgeable about medicine, which is how they fool the doctors. I thought, wow, I am very knowledgeable about Maggie’s medical stuff. 

Then I paused. Could they possibly think I was DOING this to her? Never mind that she was not having any problems with her intestines, bladder, or anything else that I could actually access. The distraction provide by People magazine became another source of stress. I was fighting panic on multiple fronts. 

Maggie came out of surgery and went right back into the ICU. The surgery team came up with her. If a patient goes to the ICU, they do not go to the recovery room. The patient “recovers” in the ICU. Her room was full. The team from the OR was there reporting to the ICU team. There must have been 10 doctors and nurses working feverishly. I was standing out of the way. Things calmed down a bit and the handoff to the ICU team was almost complete. Just before the surgery team left, I said to everyone. “I have to say something”

I announced to all these professionals that I had just read this article in People magazine about Munchausen syndrome and if anyone thought I was doing this to Maggie, they were wrong. Everyone stopped and looked at me strangely. One of the anesthesiologists, who I knew by name, came over to me, put his arm around my shoulder, and said, “Uhhh, this would be a tough one to fake.” 
I looked like a complete idiot, but I needed to say that. It was important to me in my exhausted overwrought state that no one was even considering that. They were not, but I am sure they had various other diagnoses for me.

I have not read People magazine since.

Here Comes Trouble

When Maggie was younger and we were facing life and death things all the time, we had a hard time relating to the everyday problems in life. When folks would lament over traffic jams or having to host a holiday meal, we were very poor listeners. We were too distracted. Steve and I had a catchall saying for how we dealt with this in those days, which was, “They need more to worry about.” Today we don’t live on the edge of the cliff like we did then and can partake in the normal ups and downs of life like everyone else.

Now I find myself witness to a phenomenon that screams the opposite. I know and encounter several people who exaggerate a child’s circumstances to make things look much worse than they really are. Instead of saying “they need more to worry about,” there are people to whom I want to say “You have nothing to worry about. Be happy for that.”  Can anyone explain to me why some parents want to exaggerate the issues their child faces?  To make a situation seem dire when it is not? What could possibly motivate them?

Before going on, I want to differentiate this phenomenon from parents who have a hard time dealing with the issues their child DOES face, (even if I would trade them in a minute.)  That is completely understandable. Parents can handle only what they can handle. Any issue a child faces  -- from being teased at school to an isolated medical problem, or a chronic situation -- is difficult on the parents.  When a parent in this situation says to me, “I shouldn’t complain to you, look that you have to deal with,” I tell them my situation has nothing to do with theirs. It is not a contest and there is no measuring of grief or concern.

What I’m talking about are people who exaggerate or simply lie about their children, or children they know.  Perhaps others have not witnessed this, perhaps it’s some strange reaction elicited because of my life with Maggie. Perhaps these people are trying to relate.  I cannot explain it, but I see it regularly.

If they are trying to relate, I can tell you it is not working. It makes me want to run in the other direction. I have the exact opposite mentality. My glass is half full. Maggie’s glass is half full. And, as I told a friend recently the reason the cup is only half full is that I already took a big gulp and enjoyed every drop. We put the best possible spin on everything and proceed accordingly.  Sometimes that is hard to do, but it’s just the way we roll.

I get that everyone does not share this attitude, and I probably drives a lot of people crazy. I get that depression and concern are part of this life for all parents and some can handle things better than others can.

 What I do not get are those who take news and deliberately ratchet is up several notches to alarm themselves and others in the child’s world, perhaps even the child him/herself; or worse, those who don’t even get any news but simply decide a problem exists when it does not. These people I want to shake and tell them to thank their lucky stars they do not have real problems. I don’t shake them, in fact I generally raise one eyebrow and then ignore them. It’s easier. If that doesn’t work I give them this one line and go about my business.

 “Don’t look for trouble. It will find you.”   

A life Beyond Reason

I read this today and want to share it with everyone. It is an essay entitled "A Life Beyond Reason"  by  Chris Gabbard, the father of August, a severely disabled 10 year old boy. I don't know the author personally, but I did know his wife when they lived in San Francisco when August was a baby.  It's long, but very thoughtful. It's so nice to see something from the dad's perspective.

http://chronicle.com/article/A-Life-Beyond-Reason/125242/ 

Garbage in, Garbage out

Maggie had a young nurse fill in the other night. She is a recent graduate from nursing school, in fact she was in Eddie’s class in grammar school and high school!  She did a great job and did all Maggie’s skilled care with enthusiasm. She had been here a couple of times before training under Fely, but she did this shift on her own. I was home if she needed any help, but she handled things perfectly.

She mentioned how much we recycle and reuse things here, which of course is very different from the hospital. When there is only one patient, you don’t have to worry about spreading germs. Cleaning things well generally takes care of things. It was actually good to hear that she thinks we are efficient with our supplies because I feel like all we do is contribute to the overflowing landfill.  

Maggie generates and incredible amount of garbage. There are at least two large plastic trash bags a day along with a bag or two of recycled food cans  and paper/cardboard from Maggie’s room every day. The rest of the house generates maybe half as much as Maggie does on her own.

The garbage presents something of a problem. The garbage cans are downstairs beneath the deck that comes off of Maggie’s room. Unless one is going to head down the stairs and put the plastic bag directly in the can, I don’t want the garbage outside at night. The raccoons will rip it apart looking for food. That leaves garbage, including diapers, strewn all over the place. Not pleasant.

Generally, I deal with the garbage in the morning. I throw the bag over the deck, put Maggie in the elevator, ride down and then put the bag into the can when I get downstairs. This picture will describe it better than I can. There are the (overflowing) cans along the fence line just at the edge of the deck. You can see the elevator shaft behind the garbage cans.

It’s efficient. Drop the bag, hear the thud, open the elevator door, get in, go down, pick up the bag, toss it in the can and proceed out to the bus.  

I did that this morning before we went shopping. But something wasn’t right. I paused and cocked my head to figure out what was wrong. Then I realized, there was no “thud.” I peered over and saw this.

The garbage was hung up on the cyclone fence. I’m just glad it didn’t land in the neighbor’s yard. That might be difficult to explain at 7AM.

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.

Fresh as the Morning Dew

Maggie's respiratory issues require constant vigilance. She coughs almost continuously and with the weather getting colder this will only get worse over the next few months.  Some of that is simply her anatomy, some if it is the trach, and some of it is the allergens present in the environment that irritate her airway. I can't do anything about the first two things, but I am trying to improve the dust level around here. 

Today was an all out assault. The housekeeper was here (cue Hallelujah chorus) and I also made arrangements to have the heating ducts cleaned out. I was hoping to arrange for them to come when Maggie wasn't here, but it didn't work out that way. I was concerned that the work itself would raise all sort of dust but that was not a problem. Not only was everything fine for Maggie's health, but had an absolute ball watching them. She cracked up every time they fired up their giant vacuum and attacked a new air duct. Maggie was laughing so hard that she was making herself cough and having trouble breathing. How's that for irony. 

Years of household dust and dog hair were sucked into that machine. The guy was concerned that we hadn't done this in a while. He's right. We haven't. Ever. I'm not proud of that, especially knowing what a difference it made. The Mother of the Year prize may have slipped through my fingers for neglecting this for so long, but it's done now. In fact if Maggie wasn't coughing so much I probably wouldn't have thought to do it at all. But it smells so clean in here right now, that I won't be so lax in the future.

I feel like I'm a Glade commercial. 

Have a Seat

Finally checking back in after several days of feelin’ poorly and not posting. Friday I snuck off to Monterey with two of my sisters, despite feeling less than 100%. That was fun, but I overdid it and felt worse when I returned.  It was totally worth it.We spent the day laughing our heads off, driving to beautiful Monterey and visiting my niece Bridget. It was a real day off for me. I was gone for 11 hours and it felt like a week’s vacation.  Nurse Josephine was here to meet Maggie’s bus when she arrived from school. Those two have a great time together so Maggie was not even mad at me when I returned. (If I am gone for a change of shift, Maggie really gets “mad” at me.)  I had to go to bed not long after arriving, though because I was exhausted, so she spent the rest of the evening with Steve.

On Saturday, I decided not to be sick anymore and just went about my day. That caught up with me by the end of the day.  We need a new chair for the nurses to use in Maggie’s room. The one that‘s in there is shot. This is not an easy task. It is difficult to find the right chair because it has to fill so many requirements at once. It has to be sturdy and comfortable but it cannot be too big because space is at a premium.  This chair will be in use 16 hours a day with people of various shapes and sizes getting up and down constantly. Because of the configuration of the room, this chair will have to be able to sustain numerous hits from the wheelchair, which means it should be upholstered, not wooden so the dings will not show. Finally, the night nurses need to be able to put their feet up and relax a bit when Maggie is snoozing, but there is no room for an ottoman. We have had a slim recliner in there for years; that seems to be the only thing that fits the bill. They wear out, though and need replacing every few years.  

 I saw an ad for a sale at the lazy boy store and went for a ride to South City to check it out. South San Francisco is not very far away but it takes a long time to get there from here. There are lots of signals and slow going, but eventually I arrived and started testing chairs.

Let me give you some advice. When you are physically worn out and pretending not to be sick, do not go test recliners. Every single one of them is so comfortable; it was all I could do not to fall asleep.   I decided that was like grocery shopping when hungry and left the store without making a purchase.

It's a good thing I didn't see this one, though. In addition to whatever physical bug I'm fighting, I'm still not over World Series Fever.

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November Thankfuls

November 5 – for my sisters, for the beautiful California coastline and for clam chowder

November 6 - for recliner stores, afternoon naps and for young enthusiastic nurses who want to care for Maggie

November 7 – that Tim arrived home safely at midnight and will be here until tomorrow.

November Thanks

November is Thanksgiving time and I try extend that to the entire month. I want to point out one thing I'm thankful for every day this month.  I'm late this year because I was swept up in the World Series fever, so I will catch up now

November 1 - Thankful that the Giants won the World Series!
November 2 - Thankful for my sister Kate, (who's birthday was Nov 2) and that certain candidates won and others lost in California
November 3 Thankful for 75 degree day in November and Maggie watching the computer at school trying to find me in the crowd of 250,000 people.
Today - thankful for another beautiful day and the opportunity ot catch up with a friend i haven't seen in many years.

the Little Engine that Could

Yesterday was election day. Like everyone else, I won some and lost some. Everyone who votes has a favorite for the big offices, but the smaller ones often slip by unnoticed unless you have an interest in that particular area. I know all the school board members because that effects Maggie, but I really don’t have any idea or opinion on the community college board. That doesn’t mean it’s any less important, it’s not. I just focus my interest more narrowly.

I did make a point to vote for a specific individual in an area that doesn’t usually get my focus. I made a appoint to find someone running for the BART Board. BART is the Bay Area Rapid Transit. I never heard of him before Monday and I voted for him on Tuesday. I can’t even find out if he won, because it’s just not making the news. 

Maggie had the day off school on Monday. We went out in the morning to run some errands and went to Safeway to pick up a few groceries.  Generally, I don’t take Maggie to go grocery shopping because it’s so difficult to push the chair and pull the cart at the same time.  Monday was different, though. What turned out to be the final  World Series game was going to start at 4:30 and the stores are packed in the hours leading up to the game  We had to get it done early that day and Maggie had to come with me.  

There were very few available carts.  I had to leave Maggie and walk way into the cart storage area to retrieve one. She was about 15 feet away from me in a relatively small area just in front of the entrance to the store. Maggie was not alone. There was one guy trying to get folks to sign petitions to get MORE initiatives on the next ballot (please!) and a nun collecting donations of food for the elderly and there was my new best friend passing out flyers and asking folks to vote for him. Come to think of it, he may have said the candidate was his friend, I’m not even sure. It was difficult to navigate through these three plus the shoppers coming and going out of the store and everyone was just sort of staring at me.  The candidate (or his friend) stopped what he was doing and said, “can I push this cart in for you.” I just smiled and said, “No thanks. Unless you want to wander through the store with me I have to figure it out.” I threaded my train into the store and smiled.

I appreciate the offer, really I do. It was a bit of an awkward moment and he bothered to notice and try to improve it. That gave me the opportunity to stay upbeat and keep control of the situation. As I walked into the store I made a mental note of the candidates name and decided right then to vote for him. He wants to be on the governing board for Rapid Transit?  Sure! Obviously he has a knack for keeping things moving. 

update - he did NOT win. 

Pracess

The Americans with Disabilities Act (ADA) did so much to improve the life of people with disabilities, including reasonable accommodations in the workplace and physical access to pretty much everything. There are, of course, those who have taken advantage of things and demanded ridiculous accommodations for questionable disabilities as well as those who have made a living “setting up” business owners who haven’t provided access in accordance with the law. They are, however, the minority. The ADA went a long way to really including disabled individuals into society.

 It is probably greedy to want more, but I do.

What I want cannot be legislated. It will likely take a couple of generations of raising society’s collective consciousness before it can be achieved.  The access assured by the ADA is a great start, but what I want is more than an ability to get into a room or building. I want Maggie and her chair to be welcomed when she gets there. I want PRACCESS – or practical access.

Maggie’s wheelchair is big and cumbersome. No one knows that better than we do. Ramps or elevators get this big chair into the building, but the groans and exasperation when we arrive are something less than welcoming. It happens everywhere and most people are completely unaware they are doing it.  We hear comments like, there really isn’t much room here or you are going to have to move, or why don’t you leave her over there etc. It’s not that people are being mean (usually) it’s that there really isn’t room. Often a fully accessible event will have no practical way for wheelchairs to get around or even to get the door opened. Wheelchair users can get in the building, but cannot participate in the event or activity because they are in the way. 

We hear it at the hospital all the time and that is particularly frustrating. Yes I realize space is tight, but we aren’t using the chair to be difficult. When I went into the recovery room the other day it happened twice. As I gathered everything to leave the surgical waiting area, the attendant said, “you can leave that here.”  Surgical waiting in on the first floor and the recovery room in on four. I just smiled and said, “unless they did something AMAZING during this test, I’m going to need it to get her out of here.” She said, Oh, right. When I arrived on the fourth floor, there was an audible groan when they saw the wheelchair. I just smiled again – but it was fake. Obviously I have to have the chair there. They found a place – but only because the next bed space was empty.  

I am not suggesting for one moment that every single place in the world needs to fit Maggies’ wheelchair comfortably. That is not practical. I know that from my own house. I am constantly shifting things around to make Maggie fit in someplace. When we do go places Maggie is always off to the side or way in the back because she’s just in the way otherwise. It is frustrating because it prevents wheelchair users from being full participants.  A better attitude toward the inconvenience a wheelchair  presents would be most welcome. If you think it’s inconvenient to accommodate the chair, try living with one.

Just smile and make a little room. That will go a long way toward making someone feel welcome.  Space will always be an issue in our ever more crowded world, but it should not prevent “pracess.”  

Halloween (Candy) Hangover

Halloween is over. We had a gaggle of trick or treaters and I was worried we were going to run out of candy. I adopted a more miserly approach to handing it out. We made it - and then I found the OTHER bags of candy. I KNEW I bought enough. I have two giant bags of Reese's peanut butter cups and Kit Kats in the freezer. Neither sounds appealing to me, I have that "I wish I had a teeth cleaning" feeling today from sneaking pieces of candy.

Trick or treat time coincided with the Giants World Series game. We watched the game as the doorbell rang over and over again. Excited little kids came to the door as their parents at the bottom of the stairs asked the score and the inning. They didn't really need to ask, though, because everytime something good happened you could hear shouts all over the neighborhood including our house. Maggie jumped every time we shouted but would then melt into giggles as we celebrated along with our friend Lexi  who was over to get a trick or treater fix and watch the game..

Maggie did not participate in trick or treating. It's not because she was ill, it's just not something we can practically do.  Stairs and wheelchairs don't mix and Halloween candy and feeding tubes don't mix. One of her nurses brought over a bumblebee costume for Maggie but is wasn't going to work in her chair. She just wore the yellow and black leg warmers on her arms. We decided those were good luck. The second I put them on her one of  the Giants hit a home run in the World Series. We wouldn't let her take them off until the game was over. She happily complied.  She ripped them off as soon as the Giants won, though.

This year the pumpkin carvings had a Giants theme. It was too easy. The Giants colors are Orange and Black and pumpkins like this with the Giants loge were everywhere.

We were, however the only family to have carved watermelons at all, and the intricate baseball theme was greatly appreciated and widely photographed.

All credit to my husband for the creativity.

All credit to the Giants for going up 3-1. They can win it all tonight!