Protect me from my mother!!

On July 5 we all go to court for the hearing on Maggie's pending conservatorship. Because she is 18 and no longer a minor, she needs someone appointed to make her decisions. The likely candidates are Steve and me and we are asking the judge to appoint me.

As part of the process, a court investigator came to the house the other day to get the information she needs to prepare a report to the judge so he/she can make an informed decision. The woman was lovely and treated Maggie with great respect. She explained to Maggie that we wanted the courts permission to continue to take care of her and had to ask Maggie if she agreed. Maggie signed yes.

The woman looked to me to make sure that was a yes and I nodded. Maggie showed her again how she says yes and no. I was smiling to myself because there is no way on God's green earth that Maggie understands what a conservatorship is, or whether she needs one, but we have to go through this. Besides, Maggie  thoroughly enjoyed being the center of attention and wanted to entertain us both.  The investigator seemed to get that too. The questions continued:

"Do you think your mom is the best person to make decisions for you." 
Yes.   


Sometimes a person doesn't want someone else to make decisions for them and they need an attorney to tell the judge that. Do you want your own attorney?


Maggie pauses, grins and then signs YES. 

Ok, here we go.

The woman looked at me again and I just smiled wanly and said "Do with that what you will, but I do not believe that Maggie is comprehending all of this." The investigator agreed saying,  "I'm not sure that was an informed 'yes.'"  I told her that Maggie often says yes just to please people. Maggie was laughing her head off at this, and I thought I caught a bit of a mischievous glint in her eye. I wondered what she was up to.

"Do you know what a lawyer does?" 
 YES!
Do you want mom to be your lawyer? 
(Giant Grin from Maggie and then )   NO! 
Do you want Dad to be your lawyer?
(same grin) NO!

Now Maggie was beside herself with laughter.

I just sat there trying not to laugh as did the investigator. She said she will explain things to the judge and the judge will decided if Maggie needs appointed counsel. Given Maggies answers, counsel may well be appointed. I, of course, have no say in the matter. Technically, Maggie and I are adverse parties if she takes the position she doesn't want this. The question is, can she knowingly take that position. I don't think she can - in fact I know she cannot, but I am not the decision maker for this particular question. If the court wants to appoint counsel to represent her, that's perfectly fine with me, though I believe it will be a waste of  taxpayer money.  In Maggie's case it will not effect the outcome because she obviously needs someone to be in charge.

After the woman left Maggie was very pleased with herself. I just looked at her and said, "Did you enjoy that?" Maggie YES. Ok, let me ask you again, Do you want mom to be your lawyer? YES.

I just looked at her. "Too late, chicky. I have a conflict of interest. Besides, you can't afford me."  She thought that was hilarious, even though I know she had no idea what I was talking about. .

Maggie was quite proud of herself.

Bobby's Tower

Today's SF Chronicle has four letters to the editor. Interestingly enough, my family is responsible for half of them. One is mine and one is from my cousin Mickey (Maureen). What are the chances of that?

Ok, to be honest,  knowing my family, it may not be that astronomical

 Both of us are moms of special needs kids, but the subjects of the letters are completely different. You can read the letters here: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/05/29/EDKM1OP32O.DTL
I am ranting about cuts to California Children's Services, which I talked about in yesterday's post.  Mickey's letter is sweeter than mine, remembering her son Bobby who loved the Sutro Tower, which from here forward shall be known as Bobby's Tower (at least in this house).

My niece and I were talking about Bobby last evening as we entered AT&T park for the Giants game. Bobby worked for the Giants checking bags of people entering the stadium - and no one got anything past him. Not his friends, cousins or even his mom. He took that job seriously. I always think of him when I go to the game. Now I will also think of him whenever I see that tower, which is visible from many parts of the City, including my back deck,  if it isn't too foggy.

Read more about Mickey's son Bobby in these two posts. Maggie World: Re-defining Special and Maggie World: Thankful.

He was a great guy who loved life and he is sorely missed by all.

Leave the disabled alone

Once again, disabled children are being used to balance the California Budget problems. This article ran in the SF Chronicle yesterday describing the elimination of therapy for kids like Maggie. http://www.sfgate.com/cgi-bin/article.cgi?f=%2Fc%2Fa%2F2012%2F05%2F27%2FMNVJ1ONAEA.DTL

 Maggie will actually not be affected by these cuts as she is now over 18 and she qualifies on her lack of any financial means. But Maggie would certainly not be where she is today if she had not received this therapy. For many many years she received both physical and occupational therapy twice a week. That has been reduced in recent years - not really because Maggie's lack of need, but because she is aging. (They point to various things to justify cutting back, but everyone knows that's just sort of how it goes in this program.)  Even with the fewer appointments, though, I cannot deny that Maggie continues to benefit and improve because of the therapy, equipment and support she receives - and has received for 18 years -  from California Children's Services (CCS)

When Maggie was little, her OT, Lidia started working with her on making choices. Eventually that let to using switch toys. Maggie could do some things well and others not so well. I didn't realize it at the time, but Lidia was providing Maggie the building blocks to use her dynavox, which she does through a complicated use of switches.  Other OTs continued this work and helped make the switches work for Maggie and her vision issues and her left handed dominance and everything else. The Physical therapists started with a child who could not ride comfortably in a car for more than a few blocks. They ordered equipment that would help, they worked her body and helped her learn to help herself as much as she possibly could. That child who could not be in a carseat for more than a block or so now sits comfortably in a customized wheelchair, (designed and paid for by CCS) most of the waking hours of the day. Recently she added a walker to her regimen and works with all her might to make that thing go where she wants it to..

I do not know where she would be today if she did not have this support for all these years and I worry tremendously both about the Maggie's who are born today and their mothers who won't get this support.

Because I don't know what else to do, I fired off a letter to the editor of the Chronicle trying to explain why this is so important and how devastating these cuts will be. They are short sighted. Providing therapy to children will prevent a lot of higher and more frequent costs down the line. More important than the money, though, is the improvement in the lives of these children. Maggie is an extreme example because she has extreme disabilities. For many children whose bodies are less compromised, the differences are even more obvious and dramatic. For some it's the difference between walking an life in a wheelchair.

Someone needs to put a price on that.

____________________________________
Just got word the Chronicle will print my letter to the editor. If it does any good, I am delighted. My problem is they only allow 200 words and I need about 2000

Mama Bear, with authority

Camp Mom starts today. Maggie is finished with school and we have two weeks until Summer school starts. That means I am chief cook and bottle washer for the next two weeks. We will have an outing every day, but I have no idea what those will be. Maggie is about the easiest person in the world to entertain, she takes absolute joy in the moment and is perfectly happy with an outing to the mall.  The mall is the easiest, but it drives me to drink so we have to mix it up a bit.

Generally we just have to fill the mornings and the nurse comes around 1 or so. That way I can split up the hours. Today the nurse is not coming until 3:00PM because we need to cover the hours this evening as I have tickets to the Giants game. (Seats are non accessible, so Maggie is out for this one.)

We do, however have to be home at 1:30 as the inspector from the court is coming. I filed papers to be Maggie's conservator and the court sends someone out to determine if Maggie really needs to be conserved. The hearing is in July and the inspector has to file a report for the judge before that time.  It's a good thing that they investigate. Once someone is conserved they really lose a lot of rights. They cannot run their own affairs, handle their own money or make their own decisions. Care must be taken that there are no shenanigans going on.

In Maggie's case it is really a formality. Obviously, one who cannot care for her own physical needs must have someone looking after and advocating for her. It is also pretty clear I'm not trying to take over her life to control her vast wealth. (She has about $80.)   It is for her protection and ours. Now that she's 18, she is an adult. Without a conservatorship, people don't have to check in with me on decisions involving her.  In a worst case scenario, doctors could prevent me from making decisions or even being informed about her health status. I'm not too worried about that but it would be stupid not to be prepared.

 I will have to report to the court annually to show what we did with her money, report where she is living etc. That's totally worth it to be able to shut people up who attempt to manipulate her, or us,  in any way. If the conservatorship is granted, I will have the courts permission to continue to act as Mama Bear, without the hibernation.  I think I know how to do that job.

Off to figure out some entertainment for the morning. Too bad she's not into drinking coffee and chatting. That would be my activity of choice.

Golden Gate Bridge

Tomorrow May 27, 2012 is the 75th anniversary of the opening of the Golden Gate Bridge. Festivities are gong on all weekend and all year.  The Bridge is a marvel of architecture and is among the most beautiful and iconic structures in the world.

In addition to its beauty, the Golden Gate Bridge is key to the success of San Francisco. It connects the City to Marin County and points north. It is a crucial link for commerce, leisure and everything else.  I just read that over 1 billion vehicles has crossed the span in the 75 years since it opened. And I believe that most of them were in front of me on a Friday afternoon.

Like every other San Franciscan, I feel a close connection to this bridge. Mine is more than civic pride, though. My grandfather, John J. Casey was the City Engineer at the time the Bridge was completed in 1937. He was very involved in the building of the Bridge. Of course when I was a kid, I was convinced that he single-handedly built the entire bridge, but I have come to recognize there were a few others involved.

John Casey, City Engineer April 1937 (my grandfather)

Engineers at the Last Rivet Ceremony. From left - Clifford Paine, engineer,  Joseph Strauss, chief engineer of the Bridge, John Casey (my grandfather) SF City Engineer,  Arthur Brown, engineer, not sure who the guy in the hat or who the child is. 

  

I found these original pictures in a book when my aunt died a few years ago. I sent some of them to an exhibition at the Marin County Fair last year an, probably because of that, I received a letter inviting me to come to the History Tent this morning because of my personal connection to the Bridge. I immediately called my mother, Carmel Casey Coghlan. My personal connection is her. Her connection is first hand. This morning, Steve, Maggie, me, my brother Pat and my mother will head down to the history tent so she can share her information.

She can tell them how, years after the fact, my father tried to impress her by telling her he was on the bridge the day it opened and she responded that she was on it the day BEFORE it opened to the public, riding in an official City car.  She can show them these pictures of her father standing on the Bridge in April 1937, one month before the opening. Because she gave tours of the bridge for many years, she can - and likely will - tell them facts they don't know. My brother and I will sit back and watch her and marvel.

Today history will be shared, perhaps even rewritten a bit. I just hope everyone is ready for it.

 Here are other pictures. I sent scans of these  to the SF Library and was advised these are official Department of Public Works photos. If you look closely you can see the date and general description at the top. All pictures were taken at the Last Rivet Ceremony in April 1937

Top:  Mayor Angelo Rossi and other dignitaries Next: Marin County Side showing the connection to the logging industries in the North Bay.  

The last Golden Rivet donated and handcrafted by Charles Segerstrom of Sonora (in fancy hat)

Hammering in last "golden" rivet. Hammer was too strong for the soft gold and it disintegrated.

Avengers on Hold

Tomorrow is the last day of school.

Sigh.

I remember a time when I looked forward to that. Not anymore. It means it's time for Camp Mom once again. Maggie and I have two weeks before summer school begins and we will have to start hitting the City's hot spots once again. I am tired already.

Though the academic year started off with Maggie fighting to keep her stamina up, it quickly improved and so did her health. In the beginning we were trying to convince Mr. G, her new teacher, that she wasn't really like this. I don't think he believed us. Finally around Halloween Maggie woke up and became her old self again. Then she flew through the rest of the year. All in all, her healthiest year in a very long time. One night in the hospital in November for a procedure and that's it. Hopefully we can repeat that next year.

First, though there is summer school to contend with. This is the first year in several that Maggie's regular teacher is staying to do summer school. It's great. It is so hard with all the transitions; having consistency is important. last year it was a new school and a new teacher, but the nurse and the staff were the same. This year she still has to go to a different school but there will be the same kids and the same teacher, nurse and staff.

Or so we thought. New school? yes. Same teacher? yes. Same nurse? yes. Same staff? NOOOOOOO!

It was just revealed this week that the paras (para professionals or teacher aides) in her class are not getting assigned to her classroom for the summer. Apparently they aren't being assigned anywhere because they are not senior enough and there are so few para positions in the summer. That is confusing because they all had jobs last year and they were less senior then.

There are three aides in her class, Ms. Eva, Ms. Laura and Mr. David,  and they are incredible. I feel terrible that they are being left out in the cold - and not just because I'm such a kind person. Oh no. I have selfish motivations as well. It is a lot safer for the kids if there are people around who know how to move them. These three actually know how to communicate with Maggie and with her classmates. They know and can program the communication devices and they know the kids. Each of these kids requires total care which means lifting, re-positioning and diapering several times a day. Seniority may not be that helpful for some of those skills. Transition to summer school things could have been seamless, but that would have been too easy. I've written to the powers that be pleading for some sanity, and asking for the kids safety to be considered, but I don't know what good it did..

I feel a little bit sorry for whatever more senior para gets assigned to this classroom if they don't know what they are getting into. It is not for the feint of heart. They may go running from the room.

We shall see what happens.  These three are like the Avengers, doing jobs very few can and I have a feeling one or more  may be called into action.

Hope so.

_______________________________________________________________________
Pictures: Maggie and Mr. David both wearing horse head shirts on the same day - by coincidence! Steve and Maggie with Ms. Laura, Nurse Janice and Ms. Eva at special olympics last week. Too bad Steve couldn't be a little taller here.

Daniella

A couple of Saturdays ago I was mindlessly folding a mountain of laundry and looking out the front window. I could see a knot of very well dressed teenagers taking pictures and getting ready to pile into a car. It was my neighbor Daniella and her friends taking off for the prom. They all looked fabulous and excited and were ready for a big night. I smiled as I watched them. How could I not. No matter what heartbreak or disappointment you remember from your own experience, the prom remains one of the key rites of passage for American teenagers.

I stopped mid fold because I realized I was smiling and thoroughly enjoyed the moment. It used to be that watching Daniella do anything broke my heart just a little bit. I didn't feel that this time and that made me happy.

Daniella has been my neighbor her entire life. she was born about 6 weeks after Maggie and was typical in every way. That's what was so hard. She started to walk, and Maggie didn't. She talked, and Maggie didn't. She had her girlfriends over, and Maggie didn't. I watched her hit and surpass milestone after milestone that Maggie never met and it hurt every time for a very long time.

At some point it stopped hurting. When kids are little it's hard not to compare, but as they grow into their own people comparisons generally stop. Maggie and Daniella were completely different from the start, it just took me a while to come to grips with that reality.

Don't get me wrong. Daniella is very sweet to Maggie and to all of us, but she and Maggie are not friends or peers in any way. The only thing they have in common is their age and the street on which they live. They have lead completely different lives, attended different schools, have different abilities and different everything.

Perhaps if things had been different, they would have been close friends. Maybe they would have covered for each other as they did whatever it is teenage girls do in secret. But that was not to be. I think I mourned that for a long time. Maggie never got the chance to be "normal" and have the normal kid experiences. Watching Daniella enjoy - or even protest - those experiences was a constant reminder of that.

Saturday Daniella graduates from high school and this Fall I will watch her leave for college. (To be honest, the college thing might hurt a little.)  She is poised and beautiful. She is ready to fly and I am happy for her.

 But a couple of Saturdays ago as I watched her and her friends leave for their prom, the first thought that crossed my mind was this: Daniella is wearing the same color dress Maggie wore to her prom. Instead of watching her experience something Maggie would not, I was making a connection to a similar experience of Maggie's. Now Maggie and Daniella have their age, the street on which they live and the color of their prom dresses in common.

And that made me smile.

Thank you Katie Beckett

A 34-year-old woman died in Iowa on Friday. I did not know her; in fact, I did not even know she was from Iowa until Friday. Nonetheless, when I heard of her passing, I felt both sad for and very grateful to her and her family. The woman’s name is Katie Beckett and I firmly believe that I have her and her parents to thank for the quality of life that Maggie has today.   

Katie Beckett changed the life of many individuals who have disabilities and chronic health care needs. She spent the first three years of her life in the hospital because of the care she needed.  Her parents wanted her home where she could be part of the family, but their health insurance benefits were exhausted. The only way Katie cold continue to get the care she needed was through government programs  and in order to qualify for those she had to be in an institution.   A child living in her parents  home would not qualify for government programs  if the parents income was above poverty level.  If that same child was  institutionalized, though, the benefits were available to them regardless of parental income.  Under government programs, individuals who needed ventilator care, or trach care or other constant skilled medical care could only be served in an institution such as a hospital or skilled nursing facility. Neither quality of life nor life expectancy was very good in those places.  

The Becketts fought the system. They approached their Congressman and pointed out that Katie’s care could be done better and cheaper at home. The Congressman,  Tom Tauke of Dubuque Iowa,  listened.  I know how long it takes to affect even small change, and this was anything but small.  This proposed change in the way the government cared for its most vulnerable citizens.   It meant changing an entrenched system. Change happened and the “Katie Beckett Waiver” became federal law was a waiver from the requirement that one had to be institutionalized to receive government benefits.  The income of the parents was not considered, the focus was on the needs of the child. That waiver allowed individuals to be cared for in their own home instead of in institutions.

It took a while for all of this to trickle down to the various states.  I don’t know for sure when it hit California, but I know that it hit Maggie 15 years ago and at that time they told me she was the first child in San Francisco to complete the process.   When Maggie was about three she was “institutionally deemed,” which is the California version of the Katie Beckett waiver.   That meant, as far as the State of California was concerned, Maggie was entitled to all the benefits and programs of those individuals in institutions.  Maggie became eligible for medi-cal, California’s version of Medicaid. That opened to door for nurses at home as well as protection for things our insurance did not cover.  Maggie’s supplies and equipment were easier to access. Though we still had a ton of things to worry about with Maggie, we no longer had to worry about having her live in a hospital.  Life became a little bit easier.

 I have no doubt that Maggie owes not only her better quality of  life but her very survival to this program and to the Beckett family who stood up to make this change. I am eternally grateful to them and to Katie who was at the center of the storm.  I offer my sincere condolences to them on Katie’s passing.

Rest in Peace, Katie.  And thank you.

Warning: Wild Weekend ahead!!

Lots going on around here this weekend. There are dinners and picnics and graduations and Bay to Breakers. Fortunately the sun came out for the first time in days, so perhaps we can enjoy all - or at least some of - the activities without the miserable gray fog we've had in recent days. I do wish these things were spread out over different weekends so we could enjoy everything, but it's a busy time of year and there are lots of things going on.

Graduation time is busy even when there are no graduates in your house. This weekend alone there are three graduation events, one nephew graduating from college, one from high school and our good friend Lexi from law school. We have to miss the one for Jeff, my nephew who is graduating from high school. We just cannot be in three places at once. I'm certain he will party heartily without us and know we wish him well.

It is very difficult to organize Maggie's care when there are busy weekends with a lot of activities. She still needs all of her things right  on schedule, even when the schedule is crazy. Generally we divide and conquer, Steve hitting one thing and me another, but that wouldn't work this weekend. I had to beg on Jeff's party because it's in Santa Rose and I just cannot get there with Maggie unless I have Steve or someone to help me.  There is a dinner tonight for Matt, my nephew finishing USF and we will leave Maggie home with the nurse. Tomorrow there is Matt's graduation ceremony and a picnic and then Lexi's graduation ceremony and a dinner following. I don't think we are even expected at  Lexi's ceremony and I had to beg off from Matt's ceremony because I can't get a nurse for that and get one for the dinner. And taking Maggie to a lengthy and crowded graduation ceremony is not my idea of fun. Nor is it hers.

Fortunately the picnic is within walking distance from us in Golden Gate Park. Maggie and I will walk over there and join the fun so she can see the cousins, aunts and uncles and Matt's friends who will be there. Before that, though I have to take her with me downtown to get some law books I need. I plan to have Tim walk around with her while I'm doing my legal thing and then we will be back here before the picnic even starts.

Sunday is Bay to Breakers and we always walk into the park to watch the throngs of runners go by. The elite runners do the 7.6 mile race in about 25 minutes. The hoards of other runners take quite a bit longer. We are guaranteed to see lots of costumes which are very entertaining and several naked bodies, which are not. (I'll spare you the pictures of the naked runners)

It's not like things let up after this weekend either.  Memorial Day weekend is the 75th anniversary of the Golden Gate Bridge and we will be hitting a few of those events, and then more graduations the next weekend. and the weekend after that. Maggie's last day of school is next Friday. I have to ramp up Camp Mom again too.

I need a nap.

And in case I forget, I have to congratulate all the graduates: Matt and Jeff and Lexi this weekend, and Jack and Nick whose celebrations are in the next few weeks.

Home at Last

This is in response to writing prompt was on a  on a couple of other blogs I follow, (Motherhood and Words and A moon, worn as if it were a shell.) You should try it.  Elizabeth has instructions on what to do with your essay here
:

Sensory Details as a Way to Begin 

Think about the time when your child (or one of your children) was born, when she first arrived home, or even before she was born. If you adopted your child, maybe you want to focus on the first time you saw her photo. Is there a certain smell, sound, taste, texture, or picture that comes to mind? Start with that. Write it down. What other concrete details do you remember? Let your mind wander. Jump from image to image. Try to use as many sensory, concrete details as you can. Don’t pick up your pen—just keep moving it across the paper—and don’t worry about grammar or spelling.

If those early days and months feel too far removed, choose another period in your child’s life that seemed particularly vivid to you, and begin writing details from that time.

_____________________________________________________________________________

Home at Last

I arrived at the hospital carseat in hand.  During our stay, I had seen so many parents come into the Neonatal Intensive Care Unit (NICU) with their carseats ready to take their babies home.  I remember asking the dad of triplets that went home at separate times “How are you going to do this?”  He laughed and shrugged.  Another mom arrived with the carseat only to discover her baby could not go home yet after all. That was crushing for everyone in the NICU.  Her baby did go home a few days later healthy and strong and everyone applauded.  I completely connected with those parents but never saw them again after they walked out with their shiny carseats. 

Today was our turn.  It had been 11 weeks and 2 days since Maggie was born and she was finally coming home. I was ready. Ready to have her home, ready to stop spending days at the hospital learning so many things I did not want to know.   I was ready to have my entire family under one roof, ready to stop pretending to my three and 5 year old sons that everything was ok. I would not have to pretend when she was home. It would all be fine. I knew all about the gastrostomy feedings and the colostomy. We could give her oxygen at home just as well as they could do it at the hospital.  I was scared, but I was ready.

It took hours for everything to come together so we could go home. It always does, but that wait was interminable.  I needed to have my little girl home.  I needed to be mom, I needed to be in charge, not to rely on nurses or wait for doctors anymore.   The time dragged while we waited for all the necessary pieces to come together.  I had to demonstrate that I could do the procedures Maggie needed. All the specialists had instructions and follow up appointments to confirm. There were well wishes and celebration too. Finally, the hospital had to ensure that we had all the supplies we needed to care for Maggie at home. Colostomy bags? Check. Feeding tubes? Check Syringes? Diapers?  Check. Oxygen?  Oxygen tubes? On the way.

Oxygen, life sustaining though it may be, was almost my undoing. The oxygen guy showed up at the hospital and started loading “e-tanks” next to all my stuff. There were at least six of them.  I was supposed to move these tanks along with all Maggie and all of her supplies and her shiny car seat.

My resolve failed. This was more than I could do. I could not even get her home. How in the world could I take care of her? 

 I stared at those tanks knowing I was a fraud. The nurse saw my stricken face and asked what the problem was. I fought back tears, pointed to the six heavy tanks, and said I cannot move all of those. Without hesitation, she barked at the oxygen guy saying, “You cannot leave this stuff here, take it to the patient’s house.”  She was the type of woman you do not trifle with. He sighed and loaded the tanks back onto the dolly.

 I looked at the nurse and gave her a wan smile. This was a house of cards and we both knew it. We just had to get home before a large wind came and knocked out house down.

 That was 18 years ago and oxygen tanks, still part of our life, do not scare me anymore The house of cards still stands.

______________________________________________________________________

The "Do Not Say" List

People often tell me they are afraid to say anything to people with disabilities or parents with disabled children because they either don't know what to say or are deathly afraid of saying the wrong thing. I always say, it's  pretty hard to go wrong with "Hello."

Yes, certainly I have had strangers say some weird things to us, and I've written about them here many times. (see Strangers tab).

I do have to something to add to to the "DO NOT SAY" list. And just to be clear, this is not limited to conversations with moms of disabled children. It's equally applicable to all women.

If you see a woman struggling with a large wheelchair in the pediatric specialties clinic it is probably wiser NOT to start a conversation with: Is that your granddaughter?

It's just a non starter, conversation wise.

In defense of this otherwise very kind man,(or perhaps in my own defense)  he was younger than me and he WAS there with his grandson.

But still.

Much better to err on the side of the compliment. Asking "is that your daughter" to a grandma will only win you points. However asking "is that your granddaughter" to the mom will get you nowhere fast. You will have played and lost Final Jeopardy.

When I told Steve the story, I noted that pickup lines have really changed over the years.  

Happy Mothers Day

Happy Mothers Day from Maggie and me. I am a mother and I have a wonderful mother and I'm thankful for both.

I hope everyone who is, was, has or had a mother is having a wonderful day. Greetings also to those who play the role of mother to children who need it and to single dads who are both mom and dad.

 And a special greeting to all your mom of special needs kids out there. It's a different job for us, that's for sure, but it is definitely worth it.

Here are Maggie and me and my own mom at a past special olympics.

Special Olympics

Maggie had Special Olympics on Friday. It was great. Perfect weather and 700 kids ready for action.This was done through the San Francisco Unified District in partnership with Special Olympics, which is the only way Maggie has even been able to participate.

If you have the chance to spend some time at a Special Olympics event, I highly recommend you do so. It will make you happy. The smiles are everywhere and I can promise you that you have never seen a more enthusiastic opening ceremonies parade. There is unabashed  pride in the Star Spangled Banner and Pledge of Allegiance and especially in reciting the Special Olympics pledge. I don't get teary eyed in Maggie's World very often, but this is so incredibly sweet it's difficult not to. Unless you are made of stone, you will be moved, awestruck, delighted and humbled all at the very same moment.

It was track and field day today and Maggie participated in two races, beating out her classmate and friend Robert by a nose in each race. Here they are laughing in the stands just before their event.


There were so many kids of all school ages ready to compete and the event seemed far more organized than in past years.  None of it would have worked  without the incredible teachers who do so much behind the scenes. There are also volunteers from various group; lots of kids from the typical school population, but also corporate sponsors. There were at least 10 people there from Torani, the syrup you mix in various drinks. I love that stuff anyway, but now I will buy it with pride. They were cheering on Maggie and all the kids in all of the events. They were also having just as much fun as the kids. Win. Win.

The whole experience was just made even better by the beautiful day we had here. The weather could not have been better. Blue sky, big sun, light breeze. Perfect. I dropped Maggie and the nurse off and had to go find a place to park, which turned out to be easy enough. When I walked into the stadium I had to stop for a minute and take in the scene.  There were a lot of people there. Student athletes, volunteers, teachers, support staff, event staff, family members and more. Some of the schools had classes of typically developing kids there to cheer on their schoolmates to victory. They had signs to root for thier particular school. It was a wonderful thing to see and to be a part of.

As I entered, I was struck by how many people were there just to make sure these kids had a positive experience. And I'll bet every one of them did. I can tell you one mom certainly did. 

Everyone really IS a winner at special Olympics.  

Maggie with her cheering sections, Dad, Miss Laura, Nurse Janice and Miss Eva.

Mothers Day approaches

My sister in law Julie sent this to me and my sisters and other moms in her world. I think it is the best tribute to mothers I have ever read and I want to share it with all the rest of you "mothers" out there. (and I mean that in the nicest possible way).

I hope you all get lanyards.

The Lanyard - Billy Collins

The other day I was ricocheting slowly
off the blue walls of this room,
moving as if underwater from typewriter to piano,
from bookshelf to an envelope lying on the floor,
when I found myself in the L section of the dictionary
where my eyes fell upon the word lanyard. 
No cookie nibbled by a French novelist
could send one into the past more suddenly—
a past where I sat at a workbench at a camp
by a deep Adirondack lake
learning how to braid long thin plastic strips
into a lanyard, a gift for my mother.
I had never seen anyone use a lanyard
or wear one, if that’s what you did with them,
but that did not keep me from crossing
strand over strand again and again
until I had made a boxy
red and white lanyard for my mother.
She gave me life and milk from her breasts,
and I gave her a lanyard.
She nursed me in many a sick room,
lifted spoons of medicine to my lips,
laid cold face-cloths on my forehead,
and then led me out into the airy light
and taught me to walk and swim,
and I, in turn, presented her with a lanyard.
Here are thousands of meals, she said,
and here is clothing and a good education.
And here is your lanyard, I replied,
which I made with a little help from a counselor.
Here is a breathing body and a beating heart,
strong legs, bones and teeth,
and two clear eyes to read the world, she whispered,
and here, I said, is the lanyard I made at camp.
And here, I wish to say to her now,
is a smaller gift—not the worn truth
that you can never repay your mother,
but the rueful admission that when she took
the two-tone lanyard from my hand,
I was as sure as a boy could be
that this useless, worthless thing I wove
out of boredom would be enough to make us even.
June 24, 2005

A Bowl of Cherries

When I was a kid I loved to read the Cherry Ames books. She was a nurse in various settings and had excellent adventures, often solving mysteries which were sometimes of the medical variety and sometimes not. These books were akin to the Nancy Drew books, but not as popular - or at least I didn't know of too many other who were into them like I was. Nancy Drew was just a girl with a keen mind, time on her hands and apparently unlimited resources, but Cherry Ames was making things happen with her career. When I think about it, she may have been the only  professional woman character in pre-teen books back in the dark ages of my youth.  I thought Cherry Ames was really something.

Because of Cherry Ames, I thought I had a pretty good idea what it was like to be a nurse in various settings. I read about her as an army nurse, a student nurse, a visiting nurse and even a department store nurse. (Department store nurse? Now you'd need one after seeing the prices. Cherry would be BUSY!)

Then Maggie was born and I met many of the real Cherry Ames of the world, nurses in so many different roles doing so many important things. Without nurses in our lives, Maggie would not be able to live at home, or go to school. Let's face it, without nurses, Maggie probably would not even have survived infancy, and would certainly not be thriving as she is today.

Maggie was whisked off to the Newborn Intensive Care Nursery within moments of her birth. In there I met my first Intensive care nurses, who were so incredible and so highly trained. Carol, Ginny, Amy, Ann (no E) and Anne  and so many others were  Maggie's earliest nurses and they helped me deal with the shock of Maggie's congenital problem while teaching me how to care and advocate for her. They taught me to question the doctors when I felt the need and I haven't shut up since.

They were the first in a long line of nurses that have been in our lives every single day since Maggie was born. There are critical care nurses in the various ICU's, acute care nurses on the floor of the hospitals, chronic care nurses every single day at home. There have been nurse practitioners at the various specialists and nurses in the doctors offices. There are nurses at the insurance company, nurses who are case managers at the hospital and at the various government agencies with which we deal.

There have been several school nurses who make it possible for Maggie to attend school. And for those of you who might have the wrong idea, the school nurse is not the lady in the office who hands out band aids and calls your mom when you throw up. They are in the classroom giving kids a chance at some normalcy in life.

I'll bet I have conversed with thousands of nurses over the years and at least two or three every single day.
Nurses come in all shapes, colors, sizes, and temperaments. They are men and women, tall and short, fat and thin, nice and mean, strict and not. They are as varied as any group of people you will ever encounter, But every single one - even the mean ones - are compassionate and skilled.Without exception, these people have helped us - both Maggie and the rest of the family (especially me).

I appreciate everything they do for Maggie and for all of us. I don't say it often enough, but I do appreciate it with every fiber of my being.

 This is nurse appreciation week. Get out there and kiss a department store nurse!

Maggie's entourage

Maggie's off to school but she is definitely in tired mode. We all are. Whew! What a weekend.

Of course the main focus was the prom and Maggie continues to bask in the glow. I read her all the comments from here, facebook and email and she loved them. I think Maggie's joy is infectious. I suspect every girl is just as excited to get dressed and head out to her prom, but high school girls have to be "cool" and not show it. Maggie does not have to act cool so the pure joy comes through.

Maggie told me to say thank you to a few people. Before I forget again, I have to give credit where credit is due. Maggie's costume designer is Anne Marie Hanley. She is the daughter of a friend of mine and has an excellent eye for fashion. I suspect you will all hear her name in the fashion world in a few years. She gave Maggie the dress and matching wrap knowing how perfect it would be on her, and she was right. .

Of course the dress was a tad too large and I had to rely on my friend Rose to do the alterations. My lack of ability with a needle and thread are legendary. Steve does some mending but the work on the dress was above his pay grade. There is no way to do a fitting on Maggie and the alterations had to be done by guesstimate. Rose guesstimated perfectly and Maggie looked fabulous.

Now we have to ease ourselves back into the reality of Monday morning. It won't be easy.




.

Prom Recap

The Prom was a rousing success. The kids looked fantastic. As "Teacher Joe" said, they really didn't look like kids at all but sophisticated folks out on the town, which is exactly what they were.

Maggie was so excited before we left I had a hard time getting her dressed. And once she was dressed, the excitement only increased.

Maggie's night had two separate and distinct parts, and each was important to the entire night. I wrote a couple of weeks ago that Maggie had an actual "date" for this prom. That was a first for her. She was excited. Tyre, who is also non verbal, had his mom call to find out if Maggie would go with him and wanted to know the color of her dress so he could match and get appropriate flowers.

But it was not to be.

Tyre had to go in the hospital and could not go to the prom. I called his mom the other day and asked if Maggie could come by on her way to the prom and take pictures with him. I didn't want to make it harder or sadder for him but I wanted him to be part of the night if his mom thought it was a good idea. She thought it was a great idea and planned to get Tyre dressed in his matching outfit for the photo shoot.

We headed up to the hospital on our way to the prom. Tyre was ready and waiting, and he looked spectacular. They both did. He had flowers all ready for Maggie, which complemented her dress perfectly.

Tyre's mom and I took a ton of pictures and the kids were getting really tired of it. Maggie finally gave her "Paparazzi, Stop" pose.

With some sadness, we left Tyre behind and headed to the prom. It was at the MoAD, Museum of the African Diaspora, which was very cool. I want to go back when it's not packed with dolled up teenagers. 

Maggie and her friends hung out together and then hit the dance floor. The dance floor was packed and everyone was having a great time. The music was pulsing, to say the least. I can assure you I never heard lyrics quite like those at St. Rose Academy. 

There weren't too many of Maggie's special ed peers there, but enough that we had a good time together. Best dressed award definitely went to Chuy.

Maggie had fun with Miss Laura, who looked beautiful and with her teacher,  Mr. G.

Maggie's oldest friend Anthony was there too and he was having a great time. They have been in the same programs and classes since infancy.  By the end of the night, he and Maggie were holding hands. 

Fickle girl, that Maggie.

 All of us are a little worn out this morning, but it was a great night.

Off to the prom!

And someone is a little excited

Forget it!

All week long I have been waiting for Thursday morning so I could get rid of the temporary crown in my mouth, which tasted like stale gum, and get the new one popped on. I couldn't forget May 3 because it's my wedding anniversary. Steve and I can go to dinner tonight with my beautiful new crown in place.

I woke up early this morning to get my shower done before starting Maggie's morning routine because I knew I wouldn't have time after. The bus was a little later than usual, but Maggie got off to school without too much trouble. I came inside, talked to Steve. We exchanged gifts and laughed because both were so practical. Hey, that's likely what got us to 26 years.

 I did this and that and the looked at the clock. 8:58. Almost 9:00. Hmmm... What did I have to do today? Then I remembered. 8:58?  Jeez, I have to be at the dentist at 9:00. I flew out the door in my sweats and with coffee on my breath. I  called the office as I got into the car and zoomed down there.

Since I have the nicest dentist in the world it wasn't a problem for him.  I, however, am a little troubled by it. I used to have a mind like a steel trap but now there is just too much going on and my little brain cannot keep everything straight.

Of course I had just finished fouling off another curveball. Maggie's nurse called in sick at the last minute yesterday because her back hurt. Ok, these things happen. I found a replacement lickety split. The she called back last night to tell me she would be out for a week because she has shingles. (Third case I've heard about this week.)  Ok. Bummer for her. I checked online about exposure to shingles and I'm not worried about Maggie because she had the chicken pox vaccine. (You can't "catch" shingles, but you can catch the virus and it causes chicken pox in people who never had it).

Maggie went off to school and then the school was concerned if Maggie was exposing other students to chicken pox. I didn't think so, but I had to check with the doctor because online sources are notoriously unreliable. This time they were right on the money.  Everything is cool, Maggie is not in fact Typhoid Mary (Margaret) and she is not infecting anyone at school.

Somehow, though I am going to blame her for my memory lapse. It couldn't be my advanced age. It must be something we catch from our kids.

Right?

Prom Prep

The Prom is Friday night. Maggie is excited. My friend Rose is coming over to do some alterations on the dress today and Maggie is ready to model. Maybe we'll tease with some pictures later. Stay tuned

In a sad turn of events, however, her date will not be able to go because he is stuck in the hospital. I called his mom yesterday and asked if Maggie can come by before the prom to visit. If it would make him happy, great. If it would make him sad, then we wouldn't do it. She agreed it was a great idea.

Once she is all ready to go, Maggie will stop by the hospital in her prom dress and he will be in his suit, with the shirt that matches Maggie's dress, so they can take pictures.

Maggie will love it and he will love it.

Sows ear, meet silk purse.