Thursday, June 30, 2011

Language is Power



A friend  proudly posted on her facebook wall about her son’s first word.  He said “bye bye.” They tested him several times to see if he would do it again and indeed he did. That is a momentous thing. It is the start of one exercising control over what happens to them. There is a reason so many toddlers are adept at the word “NO!” They finally have a say in what they do, eat, wear, etc, because language is power.

We learn to talk and we learn to listen. We learn through language eventually figuring out how to read and write, thus conveying language in additional forms. Language is the basis of all our interaction with one another and it comes in all forms.  I cannot even guess how many spoken languages there are (or were); and yet many of us are limited to just one. The deaf, who cannot hear spoken language, learned to communicate through sign, which is one of the few international languages.

Language is just one of those things you take for granted, at least until you cannot understand someone.  Of all the disabilities and medical problems Maggie has, her inability to speak is the most difficult for me. If I could magically fix it all I would do so, but if the magic extended to fix only one thing, it would be language. She might have a different opinion on this matter, but she can’t tell me what it is, so I don’t  know.  And that’s the problem.

Before she had the trach, Maggie did say an occasional word. Her favorite was “mama” and she would say that in various tones and at various decibels to convey what she wanted. She would call me, chastise me, greet me, correct me and laugh at me all with one word.  It was hilarious. The tracheostomy tube silenced that along with her joyful laugh. I miss both terribly.  But it could not keep her from communicating

Language is just one form of communication, though, and Maggie can communicate even if she cannot speak. Communication is necessarily a two way street, it requires  a sender and a receiver.  If there’s no one to receive what you are saying, there is no communication.  Maggie is an excellent receiver. She understands everything. Everything.  In fact, if she gets any better at “speaking” I may be in serious trouble. She knows all my secrets.

Maggie does “speak” somewhat. I’ve written at length about her amazing abilities with her dynavox. She is getting more and more adept at using that every day. It is not a perfect set up, but it is a wondrous thing. The machine itself presents some limitations  and Maggie’s  ability to utilize the incredible things it does have to offer limits her even more.  The biggest limitation to it, though, is that others don’t really accept it as actual communication yet. Those who recognize the machine are amazed at her abilities, but don’t really “listen” to what Maggie has to say. The technology is still off putting for many. That will change over time as more and more people get access to this technology, but for now it is another  roadblock to capturing all the power that language has to offer. The technology  is unbelievable and it has provided Maggie  with some of the power of language.  The taste of that power, limited though it may be for Maggie, just makes her hungry for more.

I can only imagine what Maggie would have to say if she could tell me what she is thinking. Think about it. She's 17 and I have been her mouthpiece her entire life. There is an outside chance I have read her wrong once or twice. If she could call me on a lifetime of errors, I might just get an earful. 

If only.

Tuesday, June 28, 2011

Floored

After five  years of ignoring the need, we are getting our hardwood floors sanded and refinished. It will look amazing and I will be absolutely delighted when it is done. I have to keep telling myself that  because getting from here to there will be a challenge. The very thought of the preparation for this is exhausting.

 Any type of home repair or improvement  is very difficult to accomplish with Maggie in the house. We operate with very little room for deviation and the noise and disruption of construction or repair are too much. We let things go far longer than we should to avoid upsetting the delicate balance of our little eco system.  However, when you reach the point of no return, you just have to bite the bullet and do it. That’s where we are with the floors.

Hardwood floors fun throughout the entire house, with the exception of the kitchen and bathrooms. In order to get them refinished, we have to completely move out, lock stock and spice rack. Everything.  The furniture, the rugs, stuff in the closets, everything.  We decided not to do the bedrooms this time because we have to have someplace to store everything. We can do those another time and simply vacate the upstairs without disrupting everything.  We are also leaving the carpet in Maggie’s room so we don’t have to move things out of there.  Now we can put the biggest pieces of furniture in the kitchen and in Maggie’s room, a bit in the basement and all the chairs and boxes of things in the bedrooms upstairs.   Four days later we will put it all back and reclaim our house with its gleaming wooden floors. (Refrain) I will be delighted when it's done..

As daunting as all of that sounds, it is only the beginning. We also have to figure out WHERE to go that can accommodate Maggie’s access needs and handle all the equipment and things we will need , including nurses coming and going at all hours. In addition to Maggie’s clothes and wheelchair, we have the oxygen (and tubing), the compressor (and tubes), the feeding pump (and bags), the suction machines (and tubes), the nebulizer (and tubes), the dynavox, the pole, 13 different medications and syringes, trach masks, catheters (two kinds) , extra trach tube and extra  gastrostomy tube, two cases of food, feeding tubes, diapers, chucks, wipes, and of course the IPOD full of Lady Gaga tunes with the player.  (Note, list is not exhaustive, that’s just off the top of my head).

We considered going to my mom’s house, but the flight of stairs into the house means carrying Maggie more than I can safely handle. We planned to go to my father in law’s house, where we can get Maggie onto one level easily, but it is an hour away and I wouldn’t have any nursing help.  Plus there would be no way to monitor what’s happening at the house and if we forgot anything it would be too difficult.  I considered a hotel but the cost is outrageous.  My brother Pat offered to let us stay at his house in the City. He will be out of town that week and his house has a bedroom and bath on the ground level.  We can have the nurses there and we can run back and forth to our house to deal with the contractor and to retrieve any forgotten supplies. As of this moment,  that is the plan. It is the best possible option and I appreciate it tremendously.

Still,  I am not looking forward to all the work and hassle of this. I just keep telling myself it will be worth it. And we won’t have to do it again for 15 years. It will need it in 10, but we will ignore it for 5 years. 

(Refrain) I will be delighted when it's done.

Monday, June 27, 2011

Pub Crawl


2011 Mother of the Year may be out of reach for me. I took my severely disabled, underage teenage daughter to a bar on Saturday.  Above picture taken from outside through the picture window But first we had to get through the wild partiers in various stages of dress and undress.
Basically, her mom took her to do things other 17 year olds have to sneak out to do. She had a blast!
This was the going away party for Maggie’s teacher Tanya Derkash who leaves San Francisco for her adventure teaching in an international school in China. This party was not limited to friends from school; this was Tanya’s good-bye to friends from various parts of her life. There were just four students there as well as the classroom staff and others from Mission High. Maggie was beside herself to be out clubbing on a Saturday night.

Maggie with Nurse Janice, Ms Laura and Ms. Derkash

Getting there was not easy. The club was across town, but it should not take more than 15-20 minutes to get there (not including parking). It took over an hour!  In fact, I had to pull over to suction Maggie at one point. I took the most direct route completely forgetting it was Gay Pride weekend and found myself trapped in traffic because the “Pink Party” had streets closed around Dolores Park. Cars were just not moving and I was one in one of them. Initially I was exasperated by it, but I decided to just enjoy the energy of the revelers around me. There were some wild outfits and huge smiles everywhere. Changing attitude is the key to surviving traffic jams.

When we finally arrived at Tanya’s party, there was no sneaking in. We had to open both doors of the saloon to fit Maggie’s wheelchair. Believe it or not, most bars are not set up to accommodate a giant chair like Maggie’s with the attached computer, but there was absolutely no problem here. It was crowded, but nearly everyone in there was part of the celebration and people were happy to meet a couple of Tanya’s students.  Lepa, another student, who has disabilities somewhat similar to Maggie’s is already 21 and promptly ordered himself a beer. Others helped him as he consumed it through a straw.  Cindy a speech therapist I have known since Maggie was little said, “You know I met Lepa when he was three and I just never imagined than I would be sitting in a bar having a drink with him.”  The other two students, Patrick and a girl I do not know came with their parents just like Maggie. Patrick just kept telling me that he was happy, and his smile confirmed that.

We did not stay too long. Maggie still needs all her procedures done and the long ride over there cut into our celebration time. We were home before 9PM, wild women that we are, but we crossed a new line. Maggie is ready to see what else is out there in the San Francisco nights.  

Maybe next week we will hit the track. Maggie can bet on the ponies.  

Sunday, June 26, 2011

Just give it to me straight, I can take it.

I'm fooling around on the computer and I told Maggie I needed to go get in the shower before her nurse goes home. Apparently she agrees because this is the sentence she  just said on her talker:

"Mom, go to upstairs. Mom is stinky. Hurry up. I miss you mom"



I think I better go get in the shower. 

Friday, June 24, 2011

Timothy P. Shriver: The Bitter Truth

This article appeared on the Huffington Post on Friday. Tim Shriver is the head of Special Olympics and represents people with Intellectual disabilities, but his eloquence speaks for every person with disabilities of all types. Take part in the dignity revolution.

Timothy P. Shriver: The Bitter Truth

Thursday, June 23, 2011

Fellini, Table for 2

After making the comment about the parking structure at UCSF, this story popped into my head. that means, it is time for another trip down memory lane.

Maggie was little, maybe two, maybe not quite.  Though not positive of the date, I can confirm it was a terrible time for her medically. That was the case for the entire first three years of her life. The morning started at 8:00AM with a potential problem with the shunt in her head.  I cannot recall the symptoms now but I had to make a mad dash up to see the neurosurgeon. That is never good.

As I drove toward the massive parking structure at UCSF, I spotted a car leaving on the street. Impossible! (In the 17 years I have been going there with Maggie I think I have parked on the street about 5 times.) Even though there was a parking meter, we can park all day with the handicapped placard. This spot would save me at least 15 minutes. I snagged it.

I started down the long hall to Neurosurgery. (For those of you who know UCSF, it was in a different location then.) I passed Pediatric Surgery, a different department. Maggie’s surgeon Dr. deLorimier was standing in the hall. He asked what was happening and I told him. He looked grim faced and wished us well. (see earlier post on Dr deLorimier at Maggie World: Big Al)

We spent the day undergoing various tests, a ct scan, a nuclear medicine test, etc. Finally about 8 hours after arriving, they decided Maggie could go home and be monitored there. It was 4:45 PM. As I left, I saw Dr. DeLorimier way down the hall. He was heading up to the hospital to do his rounds. He raised his hands as if to say, “What happened?” I gave him a thumbs up and he clapped.

This is before Maggie had a wheelchair and I carried her everywhere, which was not easy. She was little and light; but she has never had head control, and it took two hands to keep her steady.    We loaded back into the car. Someone saw me leaving and immediately stopped to grab the coveted parking spot. I started the car, fastened my seatbelt, put on the blinker and pulled the emergency brake. 

The handle of the brake release came off in my hand.

For a moment, I thought I pulled the hood release by mistake.  That doubt was erased when I looked at the thing in my hand and it read “BRAKE RELEASE.”  I can still see those words as clear as day.  Sadly, the brake did not actually release when it pulled out and I could not move the car.  The driver awaiting my spot was honking. The traffic was backing up behind him. I showed him the brake release and hanging cable as if to offer some explanation.   

I unloaded Maggie and went back inside to find a phone booth. (You remember those…back in the days before cell phones.) Naturally, at 5:00PM there was a long wait for AAA just to pick up the phone, not to mention the wait time for a truck.   I balanced Maggie on the little area next to the payphone and waited for them to answer. I felt a tap on my shoulder.  I turned around and there was Dr. deLorimier again, returning to his office from his rounds upstairs. He said, “Are you ok.”  I silently handed him the brake release, which was still in my hand. He was very sympathetic.

He said, “Can I DRIVE you someplace?”  I smiled and said “no. I have to deal with this and I need the car. I’m sure it’s just some button to push, but I don’t know where it is." He looked at an obviously exhausted Maggie and a frazzled mom and said, “Are you sure?”  I nodded and gave him a grin. I said, “My life is a Fellini movie.”  He doubled over laughing. He knew I was right.

The tow truck came. I learned how to release the brake with my foot, which I did for about six months until we got around to fixing it. 

Maggie and I went home exhausted. The next day they had to do the surgery. 

Wednesday, June 22, 2011

Lucky Wednesday after Bad Tuesday

Yesterday was not fun. Maggie's scare in the middle of the night and the sleeplessness that followed were a bad start. However, after posting yesterday, I realized the guilt train was going nowhere and jumped off.  Incidents in the middle of the night are just one of the many reasons she has a nurse at her side. Maggie is fine. The nurse did what she was supposed to do.

The day got worse before it got better, though. I was eating a lovely cous cous salad with kalamata olives for lunch. Healthy...or so I thought.  I was unaware that the olives had pits and broke a tooth clean off. Arrgh. What's worse? The actual breaking of the tooth (which COMPLETELY grosses me out), the pain of sitting in the dentist chair to get it repaired or the shock of the fee. None if it is fun.

My dentist was on vacation and I had to call someone else. I called one of the three dentists who covered emergencies when my guy is out of town. I had no connection to any of them and just randomly picked one.   As I relayed my tale of woe, the kindly woman on the phone said they could help and asked my name. I told her Sally McDonald,  but Sara for insurance purposes. (Yes my given name is Sara but no one has ever called me that.)

There was a pause and then she said, "Is your maiden name Coghlan?"  Whaaaa? How could she possibly know that. I use both names professionally and on my email etc, but not in conversation. I thought about it a moment and could think of one friend who worked in a dentists office. "Kennedy? Is that you?" Sure enough. my old friend Kathy Kennedy was the receptionist. We go back to grammar school and high school days, which is a long time. We still get together for the occasional lunch or other soiree.  If you've been here long enough, San Francisco becomes  a very small town, even though it is a large city.  Knowing she was there  took away a lot of the fear of dealing with a new dentist. Score.

My appointment was at 8:45 but I had to make a quick trip to UCSF to drop off more lab work for Miss Maggie first.  Generally "quick" and "UCSF" don't belong in the same sentence, but today it really was. I had to pull into the 8 story parking structure because there is no place to park, but I whipped in, dropped off the stuff and whipped back to the car. Much to my delight, they didn't charge me the $3 parking fee because I was less than 10 minutes. Score!

As I left my friend Kathy called to tell me I might have to call another dentist because there was no assistant available. Since I was already en route I said, let's see what he can do. I feared I would be referred for a root canal anyway. Glad I didn't cancel.  He worked some magic that was almost painless and will keep things covered until my own dentist can return and make a crown. I can smile without looking like a hobo and breathe in air without pain.  Score again.

It seems this is my lucky day, which is a good thing because tonight I am participating in a trivia contest tonight to benefit Advokids and their work with children in foster care. Not sure how it will go but I will finally have a forum to air my cache of useless knowledge.

But first I will buy a lottery ticket.

Tuesday, June 21, 2011

No rest for the weary

Any mom knows how to sleep with one ear open. It's instinctual. You develop this skill with newborns and it never really subsides - because you need it again in their teenage years. I have a very finely tuned ability at this because I have never been out of crisis mode and Maggie never developed normal sleep patterns. I am up and halfway down the stairs at the slightest sound. Steve sleeps, generally unaware of the sound, my concern or my departure.

Last night was different, though. At 2:30AM the nurse was yelling for help and I heard NOTHING. I was in the deepest possible sleep. Steve, said almost in his sleep, "Sally I think Etoy is yelling for help. I was out of bed like a flash, but the house was quiet. I called, no answer. I thought Steve must be dreaming, but I went down to investigate. The lights were on and clearly something had just gone down. Maggie was white as a sheet with the oxygen turned all the way up. Etoy was pumped up on adrenaline. I was confused.

Maggie got into some strange position and her trach tube popped out. Then she started freaking out and flailing around so Etoy couldn't get it back in. She was screaming for help and I was sleeping through it. It is very difficult to handle Maggie when she's freaking out like that, She arches and flails and turns blue. It is not fun. She flops around like a fish and I swear one day she will flip herself right out of that bed. When you add in the need to get the trach tube replaced, it becomes nearly impossible.  Etoy handled it. She didn't like it, but she did a great job.

We have a phone in Maggie's room that the nurses can use to  call upstairs, but 99 times out of 100 I hear her calling anyway. Last night was the 1 in 100 time I don't hear. Things were happening so fast she couldn't step away to call on the phone.  I turned the oxygen back down to its normal level and Maggie was OK. Everything was fine and I went back to bed, but I could not sleep.I've been awake since 2:30. It scared me that I didn't hear anything, and though I should have been there to assist, I am glad Etoy handled things on her own.

Maggie went to school this morning, no worse for the wear. Etoy is undoubtedly home in bed after a rough night. I am very tired but I am sitting here experiencing another maternal phenomenon: Guilt. .

Monday, June 20, 2011

Sunshine!

Ahh Monday. The bus has come and gone and taken Maggie to school. We were happy to bid each other adieu. It was a nice weekend - incredibly nice weather wise. And today is another spectacular day.

This is actually typical June weather in San Francisco. The rain earlier in the month was freaky, but the wild flowers from all the rain are spectacular. I took this with my phone as we were walking up at Lone Mountain on the USF campus (about 6 blocks from here). Actually it was foggy by the time we finished this walk, but earlier the day was great.


 The fog rolls in just in time to screw up the 4th of July fireworks and stays until September. Today will be 78 and perfect. July  and August will be 58 and foggy. We learn to enjoy the good days while they last.

Yesterday we went out to see Steve's dad  and make him breakfast. He lives about an hour from here, but with Maggie that might as well be 10 hours. It is just very difficult to take her anywhere. It is much hotter out there and Maggie was pretty listless in the heat. But then again, so was I. We are temperate climate people.

Steve's dad lives in a split level house. We can get Maggie into the Family room from the back yard because it is at ground level. There is also a bedroom/office and a bathroom on that level. It is open to the kitchen/breakfast room, but those are 3 or 4 steps up. Then the bedrooms are up another full level. Despite the relatively easy access to the family room, it is actually more difficult to maneuver Maggie and her wheelchair in this house than in ours. We were eating breakfast about 10 feet from where she was sitting and she kept saying "Dad, I want to go upstairs." It was a bit heartbreaking. She could see and hear us perfectly well, but she wanted to be included at the table with us.  

You might think it would be easy to just bring her up there, but you would be wrong. We have learned that sometime we just cannot do it. Maggie weighs 76 lbs and her chair with all the equipment on it weighs about 140. We cannot do the lifting to get her upstairs knowing we will just have to bring her back down. Maggie survived and we went back to the family room as soon as it was done, but I felt bad.

On a happier note, our friends Mark and Vicki stopped by. They have been bringing my father in law dinner every Sunday for well over a year now. God bless them both. Mark and Steve have been friends since high school and they live fairly close to my father in law. They brought beanie babies for Maggie to fling around the room and she did not disappoint. It was great to get to visit with them.

Mark found this card and thought of us. I laughed so hard I had to scan it when I got home. This is taken at the Legion of Honor about a mile and a half from here. It explains a lot about both our raccoon problem and the problems with the Muni (San Francisco's bus system)

Enjoy your Monday!

Friday, June 17, 2011

Happy Birthday Tim!

Today is Tim's 21st birthday. That is just a little bit mind boggling to me because it seems like yesterday he arrived in our lives. It is fascinating to me that my offspring can be adults while I have not aged. The wonders of Science!

Tim was born on Fathers Day. He was a few days late and I was more than ready to be done with the pregnancy. That morning I gave Steve two Father's Day presents, one from each child, because I assumed we would already have the baby by Fathers Day. As I handed the gifts over to him I said, "if this baby isn't here by midnight, you have to give one of those back". Charming, wasn't I. Tim did not let his father down, he arrived in time for the 10PM news.

When Tim was born something clicked in me. "I thought, OK, this is a FAMILY." I don't know why. Eddie was already two years old and we had been caring for him and doing all family things since he was born. But the arrival of child #2 was the end of the novelty of being a parent and the beginning of honest to God real life parenting. On the way home from the hospital I was completely overwhelmed with this thought. As we drove, we passed my old high school and other landmarks from my childhood. I was thinking - I had a whole life before I even knew Steve and now we have TWO KIDS!. Steve, not knowing what was going on in my head asked why I was so quiet. I looked at him wide eyed and said/shrieked:

"We have two children and I hardly know you."

(There is a slight possibility the hormones were at play there.) That phrase has become a staple in this house. If I ask Steve something mundane, e.g.if he wants mustard on his sandwich, he will sigh and say, "You hardly know me." It still makes both of us laugh.

Tim was a wild man as a baby. His favorite thing to do was to bang his head on the hardwood floor and then give a huge grin when I would rush over to stop him. He was big and brawny from the get go and he and Eddie were a hilarious pair. They still are.

When Maggie arrived, she and Tim formed an instant and lasting bond. He loved to hold her when she was little. I've put this picture up a few times, but it is my favorite.
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If he's here and watching the game or something, he will pull her out of her chair to sit with him. He talks about the strategy of baseball. Maggie is a great listener. If something goes wrong in the game, he tells her, That guy is a BUM and Maggie signs yes.



Maggie adores Tim. She adores Eddie too, but Tim is here and I get to see it more often. When he walk into the room she starts jumping around in her chair, even if he's just been upstairs for 20 minutes. He gives her advice about school and boys. She listens intently and then laughs in his face, as any little sister would. He gets s stern face and points at her and then she laughs so hard she almost stops breathing. By then he's laughing too.

Tim is the middle of the 3 kids and in many ways the anchor for the other two.  He is fiercely loyal to friends and family and absolutely hilarious to be around. He was here last night and left at 11:00 to ring in his birthday at midnight. It was off to a rousing start, but having to be at work at 7AM may have slowed things down a bit. Maybe I have aged a bit, because that is FINE with me.

Here he is in his white sport coat, circa 1962 and painting shorts as he heads out for what I'm sure was his very first beer* on his 21st birthday.



*oh, except for the one in his hand.

Thursday, June 16, 2011

Breathing Easier

During football season, you often see a player on the sidelines sucking in extra oxygen. I never understood why that was helpful to them. They are big strong athletes in top physical condition, why do they need that?  After watching Maggie's long slow recovery, I'm starting to understand it better. It just gives the body a little boost to work more efficiently. Maggie needed it to get back to her baseline. Presumably these guys use it to stay at their peak, Since these athletes are pushing their bodies to the limit, the extra oxygen may help keep them in top physical shape throughout the span of the game. It's the same thing from two different extremes.

 Maggie's issues tend to drag on a little longer than a four hour football game, though. After 6 weeks it seems Maggie has kicked the supplemental oxygen habit. She didn't need it over the weekend, but slipped back on Monday. It's pretty easy to tell when she needs a little help because she gets quite pale and her energy level just drops. This is a pretty picture of her I took while Steve was getting the trach mask set up to give her oxygen the other day. She's not jumping around like normal so I got a good shot of her beautiful face reflecting off the light form her dynavox. It's a good example of how we know even without measuring the levels. (but we did that too)

She got sick the first week of May and basically recovered after about three weeks. But she could not keep her oxygen levels up where they needed to be. The doctor said there were likely areas of collapse. Her lungs were not fully expanding. She said it was like trying to blow up a balloon that's wet inside. It can't be done without a lot of effort and Maggie could not provide the extra effort. She was just too worn out. The supplemental oxygen gave her the boost she needed to get her strength back.

Now she's gone another two days without extra "O's" during the day. (Night time is a different story, but that's normal for her) If she needs it again, fine, but the fact that she can go two full days is a sign that this episode is finally winding to a close. And feisty Maggie is back. .

 Maybe we'll go hit the 49er training camp. She can show the guys a thing or two..

Tuesday, June 14, 2011

Short, sweet and to the point.

Still here. Running as fast as I can on the hamster wheel but not getting anywhere.


I have been working on an article that will be published in a magazine in December and it's taking a lot of my time. They want me to tell Maggie's story, what she is like, what it's like to raise her, the costs, financially, emotionally and socially etc. That's not a problem for me. Conveying her story in the allotted space is quite difficult, however. It should be about the length of this post - but to date I have written 643 posts describing those things. How do I get in all in one piece. When it is cut down to the right length, it feels sterile. When I add my style it is too long. Oh well, I will get there. 


I have not met the editor of this magazine. She and I have engaged in a lovely correspondence back and forth as the various drafts are sent. I realized the I might not be getting all the needed description of Maggie when, on about our 4th exchange she suggested I put in a quote from Maggie or a conversation the two of us have had and ended her note with  "the more I read the piece, the more I wanted to hear Maggie's voice too. " 


I looked at those words for a long time. 


How had I failed to convey that Maggie was non-verbal. How had I omitted this in all the correspondence we exchanged. I thought about what to say in return because I didn't want her to feel badly, this was my omission. I figured, the best way was to just say it outright. 


 "...it's interesting that you want to hear Maggie's voice....So do I. She is non verbal, but that is not the same as non communicative. " I went on to explain the dynavox, hand signals, facial expressions and the telepathy or whatever it is that is the basis of the communication between Maggie and me.  


Now she want to hear more about that, but it already needs to be shorter. By half. 


I have to get my shears and get back to work.



Saturday, June 11, 2011

The sit down comedienne

Maggie and I are on our own this weekend. We decided it was time to post another video of Maggie using her dynavox, this time telling jokes. You don't have to worry about the jokes coming too fast or furiously in this tape, you will have plenty of time to hear them. There are only two jokes in the 2 minute video.
video

She's here all week!

Friday, June 10, 2011

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.

Thursday, June 9, 2011

Camp Closed, Gone Fishin


Camp Mom is closed until July 15. Both Mom and Maggie are delighted.  Summer school starts today and Maggie was chomping at the bit to get back to her routine. yesterday she worked on telling me with her Dynavox saying, "Mom I go to school tomorrow. Bus please" Once she had those entire sentences formulated she "said" them 500 times. I think she was ready to go back. 

Of course  this will not be the routine Maggie is used to. Summer school is held at a different site (John O'Connell High school)  and there will be a different teacher and likely a few additional kids in her class. Resources are short and things get combined in the summer, but she will adapt.Nurse Janice is still assigned to Maggie and I believe a few of the paras (classroom aides) from Mission are assigned to her class, so there will be enough familiarity to keep Maggie happy. It might be Monday before she feels totally comfortable, but it is an adventure. 

Her day will be shorter and I have no idea what the program will entail, but I am not worried about it in the least.  I treat summer school more like summer camp. It's fun, it's something to do and she actually derives some educational benefit from it. That's perfect. I will pop in a few times over the course of the five weeks, but they have enough to figure out on the first day without me getting in the way. 

On our last adventure before summer school we were cruising around town and I decided to show Maggie where she would be going to summer school. John O'Connell high school is in a mixed use area with trendy lofts and warehouses along with small businesses and family homes. Maggie looked at the building but I don't think she understood that she would be going to school there. She has to experience it first hand before something like that would work. It's only a mile or so from Mission High and she laughed her head off as we drove by there. 

So, these are my first hours alone in 13 days. Maggie is not here. The nurses are not here. Steve left for work. The house is quiet. I do not hear Lady Gaga singing. Ahhhhh. My first few hours of alone time have been luxurious.  I have a million things to get done and projects that need attention, but for now I'm just taking a couple of hours off.  

Camp is out of session. And that is OK with me.

Wednesday, June 8, 2011

Chance encounters

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

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


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

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

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

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

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

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

I'm glad we went down there yesterday.

Tuesday, June 7, 2011

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

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



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

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




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

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

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



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



Sunday, June 5, 2011

San Francisco's Bravest



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

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

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

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

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

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

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

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

 Because that is what they do. 







Saturday, June 4, 2011

Learning the Retail levels

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

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

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

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

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

Summer school starts Thursday. 

Thursday, June 2, 2011

Sand castles

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

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

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

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

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

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

Wednesday, June 1, 2011

Camp Mom is all wet


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