Friday, March 30, 2012

Birthday Wish

Yesterday was the birthday of a new friend of mine. We've only recently met, but I can honestly say I adore him. I think he likes me too. He smiles at me regularly, though he doesn't say much.

Of course he's only 1, so that is to be expected.

He spent his first birthday, and much of his first year of life, in the hospital. It brought me back to Maggie's first year, the majority of which was spent in the hospital. She didn't spend her first birthday in the hospital, though.* The fact that my new friend had to is spectacularly unfair. Of course he didn't care. He just gave smiles to all and snuggled with his mom.

I know from experience how surreal and difficult it is to spend weeks in the hospital with your little one and I admire this mom, and all the others, very much. Perhaps it helps them to see me, a veteran of the war they are fighting, perhaps it doesn't.  I did realize something as I was walking home the other day. It is very different to have BEEN THROUGH something than it is to BE GOING THROUGH something right now.

While I remember the exhaustion and the surreal nature of that existence, I am acutely aware that I am not experiencing it right now. And believe me, the existence IS surreal. You adapt to the new world but can't remember how to live in your old world. Parents in this situation can converse easily with doctors and nurses using Latin terms like Caeser himself. But  if they are like me, they might have a hard time making a coherent sentence to family and friends. You know that the earth is knocked a bit off its axis and spinning unevenly, but you also know others don't feel that. They want to help and they do help, but they are not experiencing what you are experiencing. I felt like we were alone in this new world. It can be very lonely.

I remember the feelings. I remember the fear and the helplessness and the exhaustion and my general lack of "place" in the world. I remember the odd day when  I would actually get OUTSIDE and breathe fresh air and the way that felt for the first minute or two. It is not fun to remember those times, they were the hardest of my life. But I know I wouldn't be where I am now if we hadn't gone through them. And I know these other moms will look back the same way I am.

Fast forward 18 years and here I am - on the outside looking at parents who are doing what I did. I can relate and empathize with these parents, and tell them I really do know haw they feel, but I can also be happy that I don't have to feel like that everyday.

So listen Buddy, I have a birthday wish for you.  Get better. Get out of there. I want your second birthday and all those that follow to be at home with your mom causing all kinds of trouble. I want her to forget all the anatomy and Latin she has learned because I don't want her to need it anymore. I want her to buy you trucks and cool clothes and I want you to give her fits when you are a teenager. That's a tall order for such a little kid, but if anyone can do it, I know it's you. Happy Birthday.

_______
*If I remember correctly Maggie only spent one birthday in the hospital and she was admitted on her actual birthday. When you consider the hundreds of admissions she's had and the length of time she's been hospitalized, that's pretty good.

Thursday, March 29, 2012

Looking Back

My sister in law sent me an envelope full of pictures the other day. These were pictures she brought up for Maggie's birthday party and displayed on the table. There are several, all of which are good, but this one just melted my heart.

It's from 1998. Tim (age 8) is carrying Maggie (age 4) out to the dance floor at my niece's wedding. I love The proud look on Tim's face. I also love that Steve is letting Tim do it, but standing at the ready to support Maggie's head . I wonder if they danced like that.



This is Kelly's wedding in Helena, Montana in which Maggie was the flower girl. I've written about that before in Maggie World: Big Sky Invasion. Seems like yesterday, but Kelly and James are approaching their 12th anniversary and has three lovely daughters, all of whom are older than Maggie is in this picture.

Steve looks a lot younger than he does now, which is interesting because I haven't aged a bit.

Tempus fugit.

Wednesday, March 28, 2012

March Madness

No, not basketball: equipment.

This month has been a giant fail for Maggie's various equipment needs. Some of that is my fault, some bad luck some design problems and some chronic failures. No matter what the reason, the problems have been annoying and inconvenient to say the least.

 On March 1, I cracked up the van which is an extremely important piece of equipment for Maggie. That was in the shop all  last week and we were car less. But they did get it back to me last Friday afternoon which was twice as fast as the other place would have had it. It was expensive to fix, but I have insurance and my outlay was limited to my deductible.  It is shiny and new looking and I'm really looking when I merge so I can keep it that way.

But the car was only the beginning. Even thought the car was back Friday, in time for Spring Break, we were only able to use it on Saturday for an outing. We haven't gone anywhere in it this week  because her wheelchair broke Sunday morning. Steve did an excellent job of stabilizing it temporarily, but it wasn't really safe enough to go in the car. Her physical therapist found some replacement tubing we could use. A repair guy from National Seating and Mobility CAME TO MY HOUSE yesterday and repaired it. That is excellent service. We can finally hit the road today.

In addition to our mobility woes, we have been dealing with Maggie's new dynavox, which arrived on March 6th and set up a few day later. The excitement of that was tapered by the glitchiness of the program and some design flaws that make it difficult to work with the wheelchair. Apparently there is a "fix" for the software problems but we just have to live with the design problems. You can imagine how pleased that makes me. I spent a week trying to get someone to acknowledge the problem - which they seem to think I was making up. I repeated the issue a dozen times saying it seems like it was not designed for someone in a wheelchair. After telling me it was my imagination and there was no problem, I hear, "Oh, this particular device  was designed for an ambulatory user". Uhhhhh. Isn't that the same thing as NOT being designed for someone in a wheelchair.  Once they "got it"  they basically said it's too bad for us. Man, for the amount of money they charge, you think they might be a bit more accommodating.

The lift system we have in the house has never worked right and while I can't attribute that to the month of March, it is another fail. I spent a few hundred bucks to fix it, and it only lasted a few weeks. I'm not sure what to do about that. I don't want to throw good money after bad, but I have to do something. It is getting more and more difficult to lift Maggie in and out of bed.

Now March is drawing to a close and the car and chair are working and we will get the software issue fixed for the dynavox and, because we don't have a choice, will learn to live with the other problems. The lift remains a conundrum, but it is on my list for April.

April is a month for Spring flowers and chirping birds.We can certainly deal with a busted lift.

Here are the lovely Spring Flowers I received last night for participating in a parent panel at UCSF. How can April not be better?



 

Monday, March 26, 2012

Make it snappy!

Maggie sat patiently in her chair while Steve tried yet another repair of her headrest. If we can get it somewhat stable, Maggie and I can go out and have some fun. Being stuck in the house on Spring Break is no fun. I just received an email that a repair guy will come to US tomorrow! Yay!!!

Once Steve was done I knew Maggie had things she wanted to say but she also needed to eat. I asked "do you want your talker?" she signed "yes." I said, "Ok, do you want me to feed you first?" She slammed her hand down in an emphatic NO!  She wanted her talker so she could communicate. I laughed and started setting up the talker. That process takes a few minutes. I have to affix the tray and the pole and then the talker. She turns it on and it has to boot up, which takes another minute or two.

I finished and looked at her and said, I know exactly what you are going to say" She smiled wickedly and made this sentence

"Mom, breakfast now, I'm hungry." 

Food tastes so much better when it's ordered.


Steve also entertained Maggie by juggling oranges. if you're stuck in the house, it's good to have an entertaining Dad. (see I didn't even call him a Clown!)

           

Sunday, March 25, 2012

Day of Rest?

Ahh Sunday. A day of relaxation and rest.

Not today.

We started out quietly enough. The nurse was delayed leaving because of a flat tire, which was a bummer for her. Maggie was nagging me to get her dressed so we could go out. I promised her we would go to the park if the rain stopped but I started the crossword in the Sunday paper. Maggie was getting increasingly impatient and for good reason; I was ignoring her.

By the time I really paid attention to what she was saying she had created a very lengthy sentence. She was asking me to get her dressed and telling me she wanted to go out. Here's a quick video of the effort

 She even added the dog, indicating he could come for a walk.

It was not to be, however. Her wheelchair broke again. If it's not one thing it's another.The headrest snapped off at a central weld. It's not safe for her to be transported. I did my best mom engineering to make it safe enough to sit in. It's known as Duck tape in some circles. She's not very happy about it. I can't even do my crossword because I have to keep my eye on that "fix" as there is the outside possibility that it won't hold.



Of course it's Spring Break and now she is stuck at home - but he would have been anyway because there is no way the bus would have taken the chair like this. I am waiting to hear where to take it and will do that  tomorrow as soon as the nurse comes.

It's going to be a long 24 hours. 


Thursday, March 22, 2012

Signed, sealed and delivered

Despite my best efforts to get all the paperwork done, I had to make another trip down to Social Security yesterday. Our lengthy visit a couple of weeks ago and the follow up phone call wasn't enough. Somehow in all the confusion we never completed the paperwork for me to be Maggies' designated payee for her benefits, when they start to come.

The call came from the worker I went to before. When I arrived he said he didn't know why things weren't approved already because her case is so obvious. That's nice to hear, but I never expected it to be done so quickly. He was busy and asked his co worker to assist me. Of course his co worker has never seen Maggie.

I had to complete a lengthy interview and show my good moral character and promise, under penalty of perjury, not to steal or misuse the funds intended for Maggie. OK. Sure. Of course now that Maggie is 18, she has to agree to this. Since she had already been down there, he said I could bring the paper home to have her sign it.

I just looked at him and then said, "Umm.... she cannot sign a piece of paper. She cannot hold a pen and would not have the foggiest idea of what she is signing." He said, "OK, just have her make a mark and then have two witnesses." I shrugged. "OK. Will do."

I vowed to have the conservatorship ready to go when she turned 18 to avoid precisely this type of thing; but of course I put if off and delayed and it has not yet been filed with the court. This was an excellent impetus to get that done.

As soon as Maggie arrived from school I solemnly put the paper before her and told her that she had to sign it so that she could get Social Security. After she dropped the pen four times I decided we needed to get this on video. It was hard to do because I had to help her with the pen and we were all laughing at the same time, but you will get the gist. We tried to make it as formal as possible.

I'm sure you will agree that Maggie's rights were adequately protected here. And now you can all witness it too.

In addition to being her designated payee, I am also the designated sealer and deliverer. Maggie signed, now it's up to me to seal and deliver it.

Please let this be the end of it.

Wednesday, March 21, 2012

Dented Door Blues





Vanless. That's my lot this week. After the great mis-merge of 2012, I had to get the van fixed. No van means no way to transport Maggie.  Come to think of it,  it wasn't a "Miss" merge at all. If I had missed her when I merged, I wouldn't have this problem.

I took the car in on Monday morning and, fingers crossed, I will have it back by Friday.  I really hope that happens because going into what promises to be a rainy weekend without any way to get Maggie places will not be fun. We are fortunate to live where there is so much to do withing walking distance, but we cannot take advantage of that if it's raining. I should hear from them today if  they are ready to paint. If they are it will be dry by Friday. Otherwise it will be Monday.

I originally took the van to the place the insurance company recommended, but that shop was crazy busy and wanted to have the van for a minimum of 6-8 working days and THEN paint. When you factor in weekends that meant two weeks without the van. Not workable.

The new place is called International Sports Motors - because my minivan is so sporty. I know Adam, one of the guys who works there, and his nephew is a peer of Maggie's and he "gets" the need to have the van back.  He actually fixed my old van when Eddie had an encounter with a wall several years ago and did a great job, so I am confident this will work out too.

Right now the sliding door won't close unless the front door is open. The damage is mostly where the two doors meet, but there is a nice scrape on the rest of the sliding door. Fortunately, I did not damage the lift in any way.

Vanless during the week is not a problem. Maggie takes the bus to and from school and she is pretty wiped out after school anyway. I can walk to the supermarket, bank and post office or hop a bus to go anywhere else in town. Better yet, I could actually clean the house and clean out drawers etc. Note: I haven't yet (and it's Wednesday) but I could. The problem is the weekend.

Steve is going away this weekend and we won't even have a backup vehicle. Not that his car would help much. But in a pinch we could put the wheelchair in the back of his car and put Maggie in a specialized car seat. I probably wouldn't try that anyway because the 100 lb wheelchair would have to be lifted in and out of the back and laid on its side. But knowing it won't be here makes me a tad nervous. Obviously in a real emergency I could and would call 911, but something less than dire is always possible in Maggie's World.

With any luck at all I will hear today that we are on schedule for Friday and can take Maggie to the mall or any number of other important places this weekend.

___________
Update - they just called and the car is being prepped for paint now and will be done be Friday, barring any earthquakes, power outages or other catastrophes. Yay!


Tuesday, March 20, 2012

Maggie's World Goes International

There will be a slight deviation from a Maggie centered post today so I can brag about a friend of ours.  Perhaps I will impose that rule whenever someone we know is appointed to an important federal/international position.

J. Christopher Stevens is a good friend of Steve's. They were roommates for a while at Cal Berkeley 30 years ago and have been friends ever since. He is a great guy and comes over for dinner whenever he is in the Bay Area visiting family. I took this picture of Steve and Chris in our living room last October.


We saw him again in January, but now it may be a while before we see him again. President Obama recently appointed him Ambassador to Libya. 

Chiris is a career diplomat and has served all over the Middle East for the past 20+ years. Most recently he was the special envoy to the opposition forces (now transitional government) in Libya during the revolution. He was in Benghazi throughout the fighting. The United States closed the Embassy in Libya, but Chris and others were there.

Studly.

Today is the Senate Confirmation hearing which I intend to watch on C-Span. Don't think me unpatriotic, but I have never before tuned in C-Span and I'm not even sure what channel it is. But I will be sitting there just before noon West Coast time, popcorn in hand to watch the hearings.

I'm very proud to know him and count him as a friend, even if it's only by marriage.




Sunday, March 18, 2012

A Grand Day!

Hope everyone survived St. Patrick's Day unscathed. We did the traditional corned beef and cabbage dinner here with family. We were nine for dinner and went through a ton of food. But, happily, there's still a ton left! That was just the end to a great St. Patrick's Day. No, we didn't go to the parade or anything. Maggie and I horned in on my sister and her husband as they revived an old St. Patricks' Day tradition from my family.

The day started typically enough. Maggie and I were up early just hanging around. It was still a bit dark. My sister Joni started texting me pictures. She and her husband Vince were in the middle of San Francisco Bay in a rowboat. They were piloting the Coghlan Beach Swim for the South End Rowing Club.

I've written about Coghlan Beach before, It's named after my dad, Frank Coghlan, but really only the Bay Swimmers call it that.  (check out the story Maggie World: Coghlan Beach). Joan and Vince were in a rowboat watching out for the swimmers in the water. Here's Coghlan Beach from the rowboat and a stunning picture of Ghiradelli Square
                                                                              
She also sent pictures of the two of them in the boat. 

It just looked freezing, so I sent her this picture in return.
  


Still I was impressed with their adventure and  decided Maggie and I needed to get down there for the presentation of the St. Patrick's Day Shillelagh.  This is something my dad used to do after the Coghlan Beach swim. The shillelagh was presented to the winner of the swim and my brother in law, who is also a member of the South End, was going to make the presentations. 


Maggie had been fed and was all dressed. Steve and Tim were still asleep so we just took off. By the time we got there the swim was over and the breakfast/award ceremony was beginning.Vince gave a great speech about my dad and the history of the swim. He commended the swimmers for braving the 51degree water, stating he knows his cold limit is 53 degrees. (Ay yi yi!) People were excited that two of Frank Coghlan's daughters and one granddaughter (Maggie) were there. It was cool


I hadn't been in that club in about 20 years and I forgot how cool it is. There are all these beautiful rowboats and various swimmers and rowers all around in various states of undress. They are definitely characters. Different faces than I remember, but the same type of individuals. It's also cool that there are a ton of pictures of my dad on the walls.

That gave St Patrick's day the right feel. 

 

Thursday, March 15, 2012

Maggie's New Voice



Someone pointed out to me that when I talked about the love/hate relationship with the trach, I left out the fact that it silenced Maggie's voice and her giggle. That definitely falls into the HATE category.

I find it amazing that someone had to point that out to me, though. For the first few years I couldn't stand it when Maggie laughed or cried and no sound came out. I guess, like everything else in our lives, that has become "normal." Her new laugh, though silent, is just as mirthful. Though I miss the sound I know she is happy and apparently that is now enough..

Of course Maggie's abilities with her dynavox have exploded in the past few years and her communication skills are better than ever. Five years ago, before she had the trach, she as still learning how to operate the device and we never heard the things we hear now. I don't think she was still learning to formulate a sentence. She started telling her jokes after she got the trach too. So much of Maggie comes through that dynavox that it is hard to even remember when she wasn't as well versed in communication. I still miss the sound of her voice, but she "talks" so much more now than she did then.

This week she is learning a new dynavox. After much study of the various options and months of waiting for reports, and then denials so we could get to proper approvals, her shiny new Dynavox Maestro arrived. With the help of Maggie's AAC specialist I was able to transfer the pages from her old device to the new one. There are glitches and things to be worked out, but this machine is very cool. Check out the two next to each other. The Maestro  is smaller and lighter than her old one and has a lot more capabilities.



There is a new "voice" on the Maestro which sounds a little like a techno-Marilyn Monroe, sort of breathless and flat at the same time. That's hilarious. For some reason the speaker sounds like it's blown but only when its performing some functions. On others it sounds fine. It's annoying, but fixable. Other glitches are equally annoying, but likely can be remedied fairly easily once we learn what we are doing.There will be a steep learning curve for a while. The dynavox rep told me I could hook it up to the internet and download fixes right to the machine. Right. I can barely figure out how to turn it on.

One criticism I have is that this very expensive machine does not have a case that works for a wheelchair user, and I would guess wheelchair users are a significant percentage of their customer base.  It does have a slick case sort of like an IPAD case, but if the case is on you cannot attach it to her wheelchair. Also the strap for the machine is on the bottom so you cannot hold it while attaching the machine to the pole. It is very difficult to mount it without dropping it. I have asked whether there is another way to protect the machine from both of these problems, but have not yet received a response. I'm hoping there is some easy fix to this stuff too.

Maggie will also have to learn the tricks of this new device, but I'm sure her success will be much faster than mine. This is her voice, after all.  


Tuesday, March 13, 2012

Trach-a-versary

Today is the 5th anniversary of Maggie getting her trach. Five years! that is unbelievable to me.

Right after her birthday in 2007, Maggie was admitted to the hospital with pneumonia. Though she had pneumonia many times before (and since) then, I knew it was bad. She needed the highest possible levels of oxygen and was still gasping for air. Her trachea, which was never anatomically correct, was collapsing and she could not get the air she needed into her lungs. We already knew from tests done months earlier that her airway obstructed her breathing during sleep and they had discussed a trach already, but I was sure she wouldn't need it. My rationale: She had this airway problem since birth and she had always done OK. We know what we are doing. On most kids the airway problems resolve on their own. It didn't with Maggie and as she grew it was getting worse. Then the pneumonia hit, and her body just couldn't keep up with her increased oxygen needs.  After about a week in the hospital we were told that she needed the trach to survive. No more rationalizing.

She was in the hospital a total of three weeks that go 'round. Two weeks before and a little over a wee after the surgery. We couldn't go home until it was safe to change the trach tube because they had to be certain we knew how. Of course it wasn't safe to even try to change it until the surgical site had several days to heal. When she finally got out of the hospital, we came home to a room filled with much more medical equipment and supplies. It was the most overwhelmed I felt since Maggie first came home from the NICU when she was three months old.

 I've said many times that we have a love/hate relationship with her tracheostomy. The love part is easy: Without question that thing saved her life. I don't think she would have lasted the week, five years ago or today, without it. The hate part is more complicated.

Before Maggie had her trach, caring for her was time consuming and difficult, or so we thought. After the trach, her care needs went into the stratosphere. She has to have someone intervening to suction or do some other intervention every minute of so. The constant vigilance is exhausting.

The first year or so after the trach was placed we almost lost her a number of times. It seemed the trach caused as many problems as it solved. After a few 911 calls,  multiple hospitalizations, changes in treatment plans and scary episodes, many of those resolved and we settled into our current state. There are still emergencies, in fact we had one on Saturday evening. The trach tube comes out and Maggie gets into distress fairly quickly. Though I have done it alone several times, it is really a two person job to get a new trach tube in and tied properly.

On a less dramatic front, the thing is scary looking and made my beautiful daughter into something of a freak. It was bad enough before the trach. The wheelchair, the communication device etc, but the trach tube is on her body and it creeps people out. Stupid, I know, but that's part of the "hate" side of the equation.

In the five years that she's had the tracheostomy, Maggie has thrived. She continues to have unbelievable medical needs, but she is far healthier today than she has been in many years.  In those five years she completed middle school, started high school, attended two proms, has friends, discovered Beyonce and pop music, really took off using her dynavox to communicate and figured out how to order us around. She is living her life and that would not have been possible without the trach.

I think the love outweighs the hate.

Monday, March 12, 2012

Now THAT'S a Glamour DON'T

Many years ago I worked with my friend Anna at a law firm. If someone made a fashion faux pas Anna would say under her breath, "Now THAT"S a Glamour Don't!" I would laugh every time. I hadn't thought about that term for a very long time. This may be difficult for some of you to believe, but I am not a regular reader of Glamour Magazine. I don't know if they still have the "Glamour Dont's" section, but boy oh boy, I know one when I see it.

Generally I am a morning person. I get right up and hit the day head on. This does not apply on the morning after daylight savings time starts. As soon as I woke up this morning I joined people all over America (except Arizona) in group denial about the time and grumbled about how dark it was. I thought I had accidentally set the clocks back two hours. Nope. It was really time to get up.

I stumbled downstairs trying to wake up all the way. As soon as I greeted Maggie the sleepiness disappeared. I have seen some strange clothing choices on Maggie and I almost always keep my mouth shut. Not today.

Maggie was already in her chair almost ready to go down to meet the bus. The nurse we have on Sunday night does 90% of the morning madness for me, which is great. Today I had to redo a lot of it.  Maggie was sitting in her chair in THIS jacket and pants combo. Yes, wild geometric black and white print pants with a leopard print jacket and a flag print bandana!


Here's a close up of the bandana in case you can't see it.

I quickly had to assess the rest of the outfit. Maybe I should just not say anything. I wondered what could possibly be under the jacket. I unzipped it a bit and saw a bright floral print shirt. 

Four articles of clothing, four completely and wildly different prints in every conceivable color. I could not ignore or let Maggie go out of the house like this. She looked ridiculous No. this was not going to happen. I don't care HOW dark it is.

When I am dressing Maggie I generally give her a couple of items from which to choose so that she has some control over what she wears. Of course I first make certain that all of the choices work together because people are already staring at Maggie and she doesn't need any additional fodder for the staring. 

I told the nurse this was not OK and that Maggie needs to look at least somewhat "put together" when she leaves. She offered to change her but I said I would do it. As soon as she left I asked Maggie if she wanted to wear things that matched and she pulled her shirt up as if to say, Get this off of me!

We switched the shirt for a solid gray and put on her gray jacket and she was ready to go. I failed to get a picture of the bandana du jour but we went with a lovely green number to offset the look.

It took so much time to change, though. that I didn't have time to dress myself. I met the bus in my bathrobe and clogs. That too is a "glamour don't," but fortunately for me, Maggie can't work the camera on my phone. 







 



   

Thursday, March 8, 2012

Steve's thank you


Steve made a short and lovely speech at Maggie's party. Many people in attendance have mentioned it since then and others want to know what he said. Fortunately, my sister in law had the video camera going so I can share it. These words apply to everyone in Maggie's Village, whether or not you were at her birthday party.  




video


(I won't know for sure if this worked until after I publish it, so fingers crossed!)

Wednesday, March 7, 2012

Back to Reality, in super slo-mo

.


We are all still exhausted from all the activity and excitement of the weekend. There is a giant basket of cards and things that we need to go through with Maggie, but she has been so busy or so tired that we haven't had time.  I opened all of them but I need to sit down with her and read them to her.

Life slowly returns to normal after the Big Birthday Bash. It's time now to get back to the day to day realities, like preparing her conservatorship papers for the court. Oh Joy.

Maybe tomorrow.

Still, things are getting accomplished, albeit slowly. I did manage to finish up the Social Security with minimal effort. Now we wait to see if the US Government thinks Maggie is disabled or not.

There is one other matter to deal with. I mentioned the small accident with the car last week after leaving the social security office. I did get the repair estimate, which is $3200 (eek!), The insurance will take care of most of it, but you know we will pay that back over the next few years.

The biggest problem is that the car will take like 9-10 days to fix. I have no idea what we are going to do without the van for that long. Maggie will be in school during the week, but there'as at least one weekend in there.  I could rent a car, but it doesn't really help me unless I can transport Maggie. If she stays healthy it's fine. We do have Golden Gate Park in our backyard and there are lots of things to do within walking distance. But is she gets sick, we are in trouble.

The car is definitely damaged but  it's completely operational and drives fine.   I could wait to have it fixed, but I will still have this problem at some point. What to do, what to do?

 I'll decide when I have more energy.

Monday, March 5, 2012

The Village Party





Maggie's "It Takes a Village" party was a raucous celebration. it was a Thank you party to every one of her
'Village People" that helped her not just to get to 18, but to thrive.

There was family, close and extended, friends old and new, teachers and therapists current and former and so many others from Maggie's World. I tried to load this slideshow, but it needs to be in video form and when I put it in video format, it was blurry. Hence I will just provide you with a link to watch the actual slide show. It should give you an idea of the festivities.



Maggie's Party Pictures!!!!!


I can tell you this: No one had more fun than Maggie!!!!!!!!!!!!!!!!!


And I realize there is a typo in the word Stanford.  Perhaps that's because I didn't GO to Stanford (that was for  you, Fiona)

Saturday, March 3, 2012

Birthday time in Maggie World

Happy 18th Birthday to the amazing 
Maggie McDonald!

Let the royal celebration commence!

Friday, March 2, 2012

Security, social and otherwise

You have not lived until you've spent 90+ minutes at the Social Security Office with Maggie. We went to do her intake as she is turning 18 (tomorrow!). When they gave me the appointment, I asked if it would be better to wait until after her birthday and was assured that one is eligible as an adult disabled person 90 days prior to her 18th birthday. Ok. Let's get this done.

The social security office is in a federal building, so there is a TSA like security system in place. Only less efficient. When you roll up with a wheelchair as loaded with equipment as Maggie's it takes a while. In fact it took us about 25 minutes to get through security. Again,  they were very nice and just doing their jobs, but OH. MY. GOD.
As is often the case, there is a very large man with a big booming voice doing the security. He could easily be a bouncer at a nightclub and toss people out on the street. He was kind, but he was going to be very thorough with Ms. Maggie. He'd seen her type before, she obviously looked suspicious to him. Every single piece of equipment had to be explained, examined and x-rayed. WHAT IS THIS? A suction machine. WHAT IS THIS? That's her computer that she uses to communicate? TAKE IT OUT OF THE BAG, I NEED TO SEE IT. Done. PUT IT BACK IN THE BAG. Done. WHAT IS THIS? That's the pole that we use to attach the computer to her wheelchair. WHAT IS THIS? That's her oxygen tank. WHAT IS IN THIS PINK BAG? Oh, that's a spare tracheostomy tube and supplies in case the tube in her neck falls out. (The guy looked a little queasy on that one). And WHAT IS N THIS PLASTIC BAG? Oh, that's an ambu bag in case she stops breathing. (He teetered a little bit there too). 

Everything went through xray, fine, but the guy knocked over the oxygen tank and it started to whistle. They all jumped at that noise. WHY IS THAT MAKING THAT NOISE? CAN YOU STOP THAT NOISE? I explained that the tank has to be upright and stood it up. The guy barked at me to lay it down for the xray. Ok, but it's going to whistle. When it came through the xray it was "smoking" and that freaked them out. I told them it was just leaking oxygen (which is why it needs to be upright.) 

While all this is going on scary looking guys were whisking right through security without a second look. We were just getting started. They wanded Maggie all over the place. He asked if she could put her arms out to her sides and I told him no, but she could possibly do one at a time. Up until the wanding, Maggie was amused. But when he started waving that thing in front of her she started giving him the stink eye look and I was trying not to laugh. He had no idea that she was DONE with him. 

After all that I thought we were too late for the appointment, but we made it into the building with exactly 3 seconds to spare and waited less than a minute to be called. That brief moment of efficiency was not to last, however. Even though the information I received is correct and one can apply for SS 90 days before they turn 18, the computers aren't programmed for someone to enter the system before 18. I figured that out in about 5 minutes. The person doing the intake did not want to give up, though, so we sat there for 90 minutes while he very kindly tried to make it work.I kept telling the guy we could come back and he said, you are here now, let's make it work. 

The guy was working, and checking with his supervisor, The woman at the next desk was helping him. Meanwhile Maggie was charming everyone in the place. She was laughing and reaching for me and cracking up whenever I talked to her, which was about every 30 seconds. Then she was growing weary of the waiting, though I was the only one that really realized that because her demeanor did not change. It was her words.  Maggie was using her talker. "Mom. Go to car Mom. Drive to school." Ok Mag, in a few minutes. "Mom, Saturday is my birthday mom" Yes, dear I know, that's why we're here. Mom I want to go now"

So do I, Maggie. So do I.

Finally we set up a telephone interview for Monday so the computers will recognize that she is 18. Even though I filled out a form for two hours at home, spent nearly two hours getting to and sitting through the meeting yesterday and now I have to do another 90 minutes on Monday, I jumped at the opportunity for the phone call.

Anything to avoid going through security with Maggie again. She is not to be trusted.


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Thursday, March 1, 2012

In like a lion indeed


March is not starting well.

We went to Social Security and after 90minutes they decided we need to do a phone application on Monday - for another 90 minutes. Sigh. Ok. There were definitely high/hilarious parts of that visit which I will put in a separate post

We left there and I took Maggie to school. As I left the school, I got in a slight fender bender with another car. No one was hurt but both cars are damaged. We were completely blocking traffic so once we disentangled, we pulled over to trade information. I was right in front of Maggie's high school and pulled onto the only available open spot, a bus zone. The other driver was right behind me. She was a very nice woman and because it is pouring rain, she invited me to sit in her car and we traded information.

As I sat there I saw the ticket guy and jumped out of the car to explain why we were stopped there. He didn't care he had already written the tickets for both of us. $255 for stopping in a bus zone in addition to whatever the damage to the car is and the deductible and and and.....  Now the other driver and I are united in our fight against these tickets. 

Waiting for the "out like a lamb part"