Thursday, March 28, 2013

Spring Break 2013

Spring Break is already half over and I haven't even complained yet! I must be losing my touch. Actually, we have been very busy girls, and that is the key to keeping Maggie happy.

Monday we took Brisco for a walk in the park. It was quite chilly but we marshaled on until Maggie started saying "Mom, I'm cold." We headed home via Safeway where Maggie lost a shoe.The right shoe. It's always the right shoe. It gets quite expensive, though I do have a lovely collection of left shoes The dog was outside barking incessantly for us as we retraced our steps looking for the errant shoe. I figured she dropped it in the park and gave up. I was halfway down the block when the security guard from Safeway came running after us waving the shoe. Excellent! I left it on the back of the chair where I could keep and eye on it and we walked home.

Tuesday we had our obligatory outing to the mall, and Maggie had a meltdown in the middle of the trip. Not sure what was going on there, but we sat down in the mall until she could collect herself. I think she was so worried we were going to leave, she anticipated being sad and lost out on half the "fun." We did get her some cool new clothes and she bought chocolate bunnies to send to Tim and to Eddie and Grace.



Yesterday we had appointments to get our haircut.  She was excited about it and on Tuesday night said so on her talker. She didn't have a word for beauty parlor and improvised and you know that always impresses me. It's difficult to read the entire thing. It says Dad dad dad I am excited because I will go to the place for my hair Mom mom mom













 Maggie has been needing a haircut for quite a while. We have been using headbands to keep Maggie's hair from hanging in her eyes. I took "this before" picture at the Post Office where we stopped on the way to the "place for my hair"

While she was looking forward to getting her hair out of her eyes, Maggie also loves loves loves the haircut itself. It's hard to cut her hair because she is laughing the entire time. 


When Maggie was done I got mine cut too. When she paid attention she thought that was hilarious, but she mostly checked out herself in the mirrors. Lisa, our cosmetologist, took a picture of the two of us with our new haircuts. 


If I can fill in today and tomorrow, we will have this Spring Break nailed. So w e are off to Clement Street to shop in various stores for various things. It's not the mall, but it will have to do.  


Sunday, March 24, 2013

Ahead of the curve



Maggie, like many of her disabled peers, is ahead of the curve in so many ways.  She is the product of advanced medicine, alive and thriving in a world that doesn't have an infrastructure in place to deal with her needs.  She is a survivor and lives in a world that is not set up for her.

 This is not limited to disabled children, either. Kids with various health care needs are surviving longer. They may need assistance but there is nothing in place because they are the first generation to survive. There is not sufficient infrastructure for any members of society who depend upon the net of social services, but for these first generation survivors, it is really up to the families to get things set up. And families are tired because they are already completely overtaxed.

I do believe that the state and federal government WANT to help, but it chokes on its own bureaucracy. Things are pieced together from this program and that program. If you shove a round peg into a square hole, there will always be gaps.  Change happens, but on a glacial timetable. (Wait, even the glacial timetable is faster now that the polar ice caps are melting so quickly.) The piecemeal approach and the delays in addressing the reality of the populations these programs serve have drastic effects on many many lives.

On Sunday I had the pleasure of sharing the story of Maggie and how we make it all work. I went to Jack's Camp a weekend camp for families who have a child with a brain tumor, or deal with the after effects of the brain tumor, even if those are none. Check out Jack's Camp, it's one of two family camps in California sponsored by We-Can, a non profit organization  was founded by a couple of MOMS to address a need that was not being met for survivors of brain tumors.  This is all funded by the Taylor Family Foundation.

The families at camp can socialize and exchange information with other families who "get it".  I participated in a large group discussion at the Camp and a lot of the discussion involved the ways the system doesn't address the kids who have brain damage and lingering effects of surviving a brain tumor. Maggie has never had a brain tumor, but as I told them, we were simply in different cars on the same road. It was the same story I hear with parents of kids with disabilities from any number of causes.

One mom pointed out she was "lucky" that her daughter was diagnosed with cerebral palsy because that opened doors to programs that her daughter would not have been able to access with only a brain tumor.

Reread that last sentence. Does that make sense to you? Of course not. If there is a child in need of services, and the services are available -- which they ARE -- why on earth would one cause be covered and another not.

Before anyone out there pounds their fist and screeches about too much government, I am not saying that we necessarily need more services, but they must be available to the children who need them. And under the antiquated service delivery system in place they are not getting there. The system doesn't recognize the Maggie's of the world or the disabled survivors of childhood brain tumors because they simply weren't part of the world when the system was set up. But they are here and part of every community.

We Can, and the Taylor Family Foundation are doing great work, but they cannot do it all. With an efficient system delivery service at the government level, organizations like these could get so much more done.



It is time to streamline and upgrade. Governmental agencies need to stop protecting what they conceive to be their territory and make sure the services get to the people who need them.  I am certain that services could be delivered in a more efficient and cost effective way and help more people.  And isn't that why they are in place.



Just don't make the families do it all. We have been pioneering for years and we are really really tired of the hardscrabble life on the Prairie.





Friday, March 22, 2013

Growing up and ditching mom

I had a bit of an epiphany the other day. Usually i am stressing about how tied down i am. Finally i started looking at it from another angle and i realized its Maggie that needs more freedom from me.

Maggie had the opportunity to socialize with some cool older folks who are accomplished AAC* users. It was great. Maggie was a little intimated but that was appropriate. She was younger than all of them and didn't know them very well. But there will be more opportunities and she will get more comfortable.

I know Maggie can hold her own communication wise when she's comfortable in a situation. I just received this picture from her classroom via text. It's a compound sentence she made on her dynavox. That is incredibly difficult to do and she does it with abandon.

If you can't read it, it says: Miss Laura, I am excited because it will be spring break and Josephine is coming to see me today.  (FYI - Miss Laura is a para in the classroom and both of those statements are correct.)


Maggie just needs the social confidence that she will gain by going on outings withOUT me. Maggie needs more freedom and a "voice" of her own.Hence Maggie now has her own Facebook page (Maggie McDonald). We have to start somewhere and this way so that she can communicate directly with folks. I will be her translator for a while but eventually she will get it on her own.

I may be in trouble when she figures out how to pay me back for all the pictures of her that I have posted. In fact, we ALL may be in a little bit of trouble.


*AAC is assistive and augmentative communication. Maggie's dynavox is an AAC device

Tuesday, March 19, 2013

From Angelina with love.

My Uncle Jack Casey passed away the other night. He was a great guy and I am sorry he's gone. He was 91 years old, and he lived every single one of them. He was still driving and and going to work right up until he suffered a stroke in December.

I come from a large Irish American family. Jack was one of seven kids. One died in infancy but the other 6 lived long busy lives producing 32 children between them. With his passing, my mother is the sole survivor of those siblings. That is hard to believe because each personality was so distinct and such a part of my life, I can't imagine they are all gone. What a reunion must be going on in heaven now!

Jack was the patriarch, the host of the family reunions, the teller of family stories and the keeper of family history. Many of us heard the stories multiple times, some only once or twice. Once you heard them, though, you didn't forget them. Thanks to Jack, my kids know about my great grand father Michael Casey as well as their own great grand father (my grandfather) John Casey and their contributions to San Francisco and to our family. That is a tremendous gift for which I am ever grateful.

Uncle Jack also had a great sense of humor. When I was a kid I was just a little bit darker skinned than all of my fair Irish cousins. There were several blonds, a few redheads and many brunettes. Even the brunettes had the fair Irish skin, though. Except me. I had dark hair, dark eyes and eyebrows, and skin of a more olive complexion. Because of this my Uncle Jack thought I looked Italian and always called me Angelina Baciagalupi.

And I always answered to it.

The other day my mom and I went to see him in the hospital. We knew from his kids that the end was near and wanted to visit. My mom was at his bedside and though he was weak and half asleep,  it was clear that he recognized her and was happy to see her.  I was next.  I wondered if he would know who I was. (He was Uncle Jack to a LOT of people). As I leaned over to kiss him, I remembered what would set me apart and said,

"Hi Uncle Jack, it's me. Angelina Baciagalupi."

His face reacted immediately. My cousin Alice, his youngest daughter said," Well THAT brought a smile." Alice didn't know the reference because she is younger than me. The whole Angelina thing was done by the time I was about 10 and she was too young to remember. I pulled that out of the deepest recesses of my childhood memories. Besides, even if she was old enough to remember,  I like to think that was something just between Jack and me.

It probably wasn't necessary. Uncle Jack knew exactly who was who and what was what until he drew his last breath. But getting that last smile from my Uncle Jack, a guy who was always smiling, made my day.

Godspeed Uncle Jack. Thanks for everything.



Nobody laughed harder at Jack's stories than Jack himself.

Jack's obituary in the SF Chronicle is  here





Monday, March 18, 2013

Christmas in April

Ok, I know it's only March. But the title works better with April.

This morning I awoke to the sound of a truck idling outside. Oh good. It's 6:30 AM Monday and the contractors are back at work next door. The hammers start flying at 7, but today we had a nice early arrival of some sort of large truck. Excellent.

I understand the need to get to work early, and I have to admit I am impressed with the work ethic of the crew. There is not a moment wasted, those guys are hard at work form 7:00AM to 5:00PM. But this is week number eight - of about 24 -  and it is getting tiresome, to say the least.

Things are going as well as can be expected with such proximity and bother. There was the incident I wrote about before when the bracing was in my yard blocking Maggie's wheelchair access. The boys hopped to and fixed it straight away. Last week someone tipped over the portable toilet and I called the owner of the house to let him know. In fairness, that was probaby some high school kids  Then the other morning,  I got Maggie downstairs, and opened the garage door just in time to see the bus pull away. Seems the big boss told the bus to move so he could hitch up his trailer full of crap and take it away. That required him to block my driveway for several minutes delaying the bus access for several minutes while he worked on the trailer. That was REALLY not cool.

I didn't say anything at the time because I was so mad I was fuming. I know that it is best that I keep my mouth shut when I'm that angry because there is just no telling what will come out. Steve made the mistake of making light of it when I came back into the house and I nearly tore his head off. (It's a dangerous job being married to me.) I said/screeched, THEY DO NOT GET TO MESS WITH MAGGIE. (and I may have used a different word than "mess".) Steve quickly understood that I was NOT pleased. The next day I mentioned to the foreman that was unacceptable and that I instructed the bus driver to ignore them from now on. He got it right away. I think he was very sad to see that garage door open before he finished and knew he was caught red handed. I told him they can do their job, but they cannot interfere with my life - except for constant noise for six months. Even a day later, my tone was clipped.

I believe we have an understanding now.

It is difficult because this is a row house. They have a lot that is 25 feet wide and it abuts my lot that is 25 feet wide. To give you an example, this is what I saw while I ate breakfast the other day. It is a workman redoing the window in my neighbors dining room, and it is taken from my dining room table.


Today has been particularly loud and shaky. A picture frame on my bookshelf fell over a couple of times. Finally I just laid it down and will put it back up when they move away from that corner of the house.

I am glad Maggie is at school all day - but next week is Spring Break so I'm not sure what we will do then. Lots of outings, I guess.

Oh and just to complete this Monday morning I have to share another ridiculous fashion choice by the nurse.  First of all, the nurse I have on Sunday night does everything in the morning, which is very helpful. Maggie is in her chair with all the equipment attached which saves me at least 15 minutes in the morning. It's good thing though, because I often have to change Maggie's clothes when this particular nurse is here. There have been some very odd outfit combinations.

This morning Maggie looked fine, though I was a bit perplexed at the 4th of July shirt. Didn't matter, Maggie is a proud American and she can show it all year long. I left it. It wasn't until I was getting ready to head downstairs that I noticed the socks.


Sure,  St. Patrick's day is over, so lets' get out the fuzzy Christmas socks with the snowflakes.

We changed those while we waited for the bus to arrive.  The workmen watched and wondered, but they seemed to be staying on their side of the hedge.

They don't want to cross me again so soon.






Thursday, March 14, 2013

Six years and counting.

Yesterday was one of those weird anniversaries, the kind you really don't want to remember but you can't avoid. March 13 is a lot of things. It's the birthday of one of my oldest friends, and several other people I know. (Thank you facebook). This is random, but for some reason I remember that in 1982 it was the day I received my acceptance to law school. Those things, while important, are not the reasons I remember March 13. I remember it mostly because it is the day Maggie got her trach.

It was 2007,  the worst year of my life. My father died in January, my mother's house was robbed in early March and the very next day Maggie got sick.  Really sick. Obviously, she had been sick many times before, but nothing like this. She was in the ICU with the oxygen turned up as high as it would go and still gasping for air. It was very hard to watch.

Withing a day or so we were told that either Maggie had to get a trach or we had to prepare to say goodbye. Even typing that now makes me shudder. We knew we couldn't watch her struggle anymore and agreed to proceed with the surgery to place the trach.

It was awful.

Awful.

I didn't think she - or we - would survive it. We wondered if we had put her through that surgery only to lose her anyway.

She stayed in the hospital for three weeks and then came home. Her care needs increased into the stratosphere and we struggled to keep up. Those first months after the trach placement were very very hard. Basically I lived that entire year certain every day was Maggie's last. She was in and out of the hospital several times, each admission scarier than the time before. But Maggie is the toughest girl in the world and kept fighting.

Eventually things settled down. Maggie recovered from the surgery. She adapted to the trach and the complications of it all started to subside. We became more comfortable caring for the trach and all that entailed.  By the time 2008 started Maggie was actually healthier and has steadily grown stronger since then.  

Now I have a love/hate relationship with the trach. I love it because it saved her life and made her stronger. I hate it because it is ugly and ties her and us to an unsustainable schedule, which we have nevertheless sustained all this time. .

Now six years have gone by and, as the saying goes, it is what it is. I realized the other day that we have all adapted.  Maggie had her graduation picture taken and my neighbor asked how we were going to cover the trach. That question took me by surprise because it never even occurred to me to try to cover it. First of all, she needs it to breathe, even while the picture is being taken, and I'm not sure how we could cover it and have her breathe at the same time; but, in addition, the trach is just a part of Maggie. Ugly as it is, a picture of her with the trach hidden would be bizarre to me.

It was funny to come to that realization because I would have done anything to hide it, or get rid of it, when it first became a part of her. I presumed our ability to adapt took all these years, Then I spied THIS guy sitting on Maggie's bed and realized the adaptation started within days of getting the trach,.

This is a picture of Patrick the Frog. He was a gift to Maggie from her nurse Fely. She wanted a green stuffed animal because she gave it to Maggie on St. Patrick's Day 2007, just four days after she got the trach. We put a trach on him then and it's been there ever since.

He is breathing easier too.

Still,  it's not easy being Green.


Tuesday, March 12, 2013

Fit for a Queen

Maggie's Prom dress is taking shape and she is beyond excited. She had a fitting this weekend with her designer and everything is looking great!

Not too many 19 year old girls have their very own dress designer, but Maggie does. I wrote before about Anne Marie who decided to design and make Maggie's prom dress for a project at her high school. (check out Maggie World: Designing Woman). She is designing the dress so that it will work with Maggie's wheelchair and straps, which is amazing. The straps come up between Maggie's legs making dresses pretty much  impossible for Maggie to wear. When she went to her earlier proms, we had matching shorts underneath to avoid exposure. That won't be necessary with Anne Marie's clever design.

Anne Marie and her mom Clare (my college roommate) arrived on Saturday afternoon with a boatload of fabric choices for Maggie. She chose a soft pink which Anne then whipped into a lovely skirt. There is a black overlay which dresses it up quite a bit. She envisions a black camisole with a sash type piece draped over it. It's quite incredible, really.

More than that, this young woman is making it from her own drawings, not from a pattern. She is able to eyeball  it and make it work for Maggie.

We put Maggie in her bed for the initial try on and Anne Marie made various measurements etc for the next phase. (Note the pink shirt is NOT part of the overall ensemble)



Then we tried it in the chair. All straps are underneath the skirt and invisible to any passer by.
Maggie also selected the fabric for the sash, which is part of Anne Marie's vision. It will be beautiful and can be the scarf over her trach for that evening and will be removable for easy care. 

This girl has it all figured out. 

We cannot wait for the finished product. Maggie would happily have taken it "as is" and dressed like a princess all day. Hey, if the tiara fits...

Personally, I remain flabbergasted at Anne Marie's generosity, skill and insight. I think there may be quite a niche market out there for this

More to come as things develop.  

Edit: I've already been asked, so let me add that Anne Marie will turn 16 next week.



Friday, March 8, 2013

Get yer International Woman right HERE

How handy that today is International Women's day and we have our very own International woman right here under our own roof. Our friend Emily has been staying with us this week. She lives in Warsaw Poland but she's in San Francisco for a seminar and she's staying with us.

Emily was Maggie's teacher in grades 3 through 5. That was her first job out of college. Starting your career with Maggie in your class! Yowsa! She left San Francisco for a job in the International school in Warsaw nearly 5 years ago. She's been back to visit San Francisco since then and usually stays with us. Maggie and Emily have a special bond.

Actually, all of us and Emily have a special bond.

What a week Ms Maggie has had. It started with Emily's arrival, included her birthday and Emily even did her nails.


 Maggie is glamorous and quite taken with herself. I'm not sure what next week holds, but it will be hard to top this one. That is for sure.

Last night the two of them were really causing trouble. Emily offered to do Maggie's "news" on her talker That was hilarious for a bunch of reasons. First of all Emily did a very long post, including phonetic spelling of some Polish words, and then accidentally cleared it before saving it. I videotaped her anguish which was hilarious.  I will just share a still because this is a family friendly blog! (but do surf my youtube channel) Suffice it to say it is beyond frustrating when that happens.


Emily figured at Maggie's age there should be some cuss words on the device. I said no because if they were on there, Maggie would press those buttons all day long. She figured if it was just in the news a bit that couldn't hurt. Maggie loved it. Here they are playing it back for the first time. 

How will I keep her down on the farm now?

Emily leaves tomorrow and it will be hard to see her go because it will probably be another year before we see her again. We can't wait until next International Women's Day.




Wednesday, March 6, 2013

Language Cop RetuRns


It's that time again!


TheRe is Room in this big beautiful woRld for some many diffeRent types of people. TheRe aRe men and women,  they aRe tall and shoRt, fat and thin, happy and sad. They aRe black and white and bRown and yellow and Red and many other coloRs. They live in diffeRent areas, pRactice differeRnt Religions and cultuRes and go about theiR day in dRamatically diffeRent ways.

Some of the diffeRences matteR to us a great deal and otheRs do not. Religion and cultuRal diffeRences have been foddeR for many a waR, but I am unawaRe of stRife based on height - except peRhaps in middle school oR on the basketball couRt. Still, even the ones that don't matteR can be the basis for huRt and angeR. Name calling and mockeRy happens among all groups.

Some of the mockeRy is so bad that society has stepped in and set limits on ceRtain things. It is not cool to make fun of someone foR being shoRt or fat and decent people will put a stop to it in a social setting. Commenting on otheR diffeRences are less toleRated, (though it still happens faR too often.) The most obvious of those aRe Race and gendeR. TheRe aRe ceRtain woRds and attitudes which, if shaRed in a social setting, will be immediately coRRected. Some woRrds are so rRprehensible they are not spoken even when coRRecting someone. They aRe RefeRRed to only by the fiRst letteR.

FoR the past seveRal yeaRs I have been tRying to convince anyone who Reads this that the "R" woRd is equally Reprehensible and needs to be Retired. In fact, I am no longer going to even type out the entiRe word.  If you can't figuRe it out, you can find it on the link at the bottom of this post.

Some folks aRe Resistant to this believing that if they use the "R" woRd to mean stupid, oR dumb oR asinine, they aRe not doing any haRm. They aRe wRong. the woRd is faR moRe poweRful than they aRe. It is packed with hatRed and discRimination and needs to go.

TheRe aRe so many ways to descRibe people or situations. TRy using another woRd, almost ANY otheR woRd because the R word has to go.

Today is the day. Take the pledge not to use the woRd and help be paRt of the solution instead of paRt of the pRoblem. I uRge you to go http://www.r-word.org/ and take the pledge.






Tuesday, March 5, 2013

Bejeweled

It is difficult to think of appropriate gifts for Maggie. She gets a lot of clothes which is great but many styles won't work for Maggie or won't work with her wheelchair. Button down shirts are lovely, but Maggie simply unbottons them so they won't really work for her. She's also very small and it's often hard to find clothes that are not designed for little girls. She did get some more sophisticated clothing for her birthday as well as itunes cards for her favorite music.

This year I tried something new. I saw these bracelets and knew I wanted Maggie to have one. I had to ask the sales lady how to secure it. (Just pull the string) Maggie can wear it without breaking it. She can't get it off and that is just fine with her. She is thrilled to have some jewelry and shows it off proudly.


I think the message is perfect for her. It simply says "TOUGH" and we all know Maggie is as tough as they come.  In fact, I can think of a few other peers of Maggie  who should wear one too. I'm especially thinking of Sophie who has a birthday today. Happy Birthday Sophie!

You won't meet a tougher bunch of kids anywhere.

Hopefully I can get a discount if I buy in bulk.

Sunday, March 3, 2013

Birthday Girl

Today is Maggie's birthday.

She is 19.

And that just blows me away.



Happy Birthday to my smart, funny, delightful and amazing daughter.