Get OFF My Lawn

There's nothing quite like scaring the crap out of two grown men first thing in the morning.

They are doing a massive remodel to the house next door to us. Work started a month ago and  will continue for another five months. The neighbors had to move out and the house is completely gutted at this point. The demolition was particularly noisy and as I write this, there is some heavy equipment running. They are pouring concrete and a tractor type thing doing God knows what. But, like anything else, you get used to the noise and it fades into the background. The contractors are nice guys. There are a slew of workers over there and the two boss types are both Irishmen. It's always a pleasure to listen to that accent and they are very friendly and accommodating to us.

I've mentioned before that I live in a row house. There is zero space between the properties. Before the work started I told the neighbors and the contractors that we would be fine with whatever they had to do, but they had to be mindful of wheelchair access. Our elevator is in the backyard and we take Maggie out through the garage.  That area abuts part of the remodel. A week or so ago they took part of the fence down between the properties. They told me they might be in our yard, and I said that's fine, but remember the wheelchair issue, and they assured me they would. They did what they had to do and there was no problem.

Yesterday they poured the concrete for the new foundation. I traded pleasantries with the foreman as the truck got into place. I walked to the store, came back, waved at the guy again and went inside.  They never mentioned that they were using part of my yard to brace the foundation. If they had asked  I would have said yes, of course, but once again I would have reminded them about the wheelchair access. Steve was moving something at 11:00 PM last night (don't ask) and couldn't get through because the forms were blocking the path.  

They arrived at 7:00AM. I called over there from the back deck, but they didn't hear me. I went out in front and the two boss types were standing in the driveway. The looked up and smiled. I just said, "Hey, I am happy to cooperate with you, but you have to move those forms so I can get the wheelchair out to the bus in the next 15 minutes. And If you are doing something in my yard ASK ME or at least tell me. I am going to say yes, but I do NOT like surprises."

Jaysus! They hopped to! That stuff was gone in a flash.

I took Maggie out to the bus with no problem and the big boss was falling all over himself apologizing. I said "it's ok, but you have to understand we have emergencies all the time and I cannot have something in the way that I don't know about. Even yesterday I had to leave early because of a problem with her feeding tube. And that doesn't really qualify as an emergency around here."

 He looked sheepish and genuinely contrite. I don't expect there will be any more issues like that. Or at least no surprises. I put the fear of God into them. Or at least the fear of the crazy lady next door. It was only a matter of time until they discovered the real me.  Steve just said, "ah, the poor lads" in his best Irish brogue.

Poor lads, indeed.

It's nice to know I still have it.

Morning has Broken

There is just nothing like awakening to the sound of the nurse calling my name at 5:30. I could tell from the tone in her voice that it wasn't a dire emergency, but she definitely needed my help. That's a good start. It's much harder when I'm afraid.

 Maggie's feeding tube broke. All right, I'm up and moving. I was glad it was her g-tube and not her trach and very glad she did it at 5:30 and not 2:30. This way I'm just up an hour early instead of missing a nights sleep. We have to find gratitude where we can.

As I headed downstairs I figured  I must have done something wrong when I changed it yesterday. I change it every few months and it's no big deal. The tube is held in place by a small balloon that is inflated with water. Perhaps I didn't put in enough water.

How silly of me to think I made a mistake. The tube was defective, the balloon was popped. In the 19 years I have been changing g-tubes, that is the very first time I've had one break so quickly. Generally the balloon pops after a couple of months and we just change it. Sometimes I change it and the balloon is still intact.

 No big deal, I'll just switch it out. Then I remembered. For the first time ever, we changed the tube before we received a spare. I don't have another one. I've never changed the tube without a spare available and it has never broken in less than 24 hours. Of course both happen this time.

Unbelievable.

This is problematic. Maggie cannot go without it because she cannot get her meds or eat without it. #@$^(%(%$#!!! More immediate than that, though, the surgical hole will close without something in there to keep it opened.  I don't want to have to go to the ER for this. It's stupid and wasteful.  Think think think.

For starters, we can keep the site open by putting the old one in. The nurse chastised me that it would not stay because the balloon was broken. I said, that's why God invented tape.  Maggie now looks like a football player taped up for the game.  One problem averted, now what to do.

Ahhh.  School! She has an extra one at school. I am going to take her straight to school and meet the nurse there. We will get to school around 7:30, do a quick change and Maggie will just go on with her day.  I will get on the phone to the supplier post haste get a couple more. If this happens again, I am all out of ideas.

Ok. It's 6:30. I have done hard thinking and problem solving. Now I have to get dressed to get her to school by 7:30.  But first I need coffee.

Junk Mail

 There is such a hullabaloo over the proposed cessation of Saturday delivery by the Post office. I see problems for bills and checks as well as issues with timing for deadlines. Then there is the (very) occasional important or fun piece of mail that comes. Despite these concerns, though, I think we can survive without Saturday mail. Maybe the post office will save enough money that they can discourage some of the junk mail, whether it is delivered on Saturday or any other day.

 In this day of environmental awareness, can we all just agree that direct mail ads and junk needs to stop. It is incredibly wasteful and annoying.  When the mail arrives I take it and stand next to the recycle bin and toss in whatever I can. Generally that's about 80-90% of my daily mail. No, I will not send you money, no I am not interested in a cruise, or in selling my house, or in refinancing my house, or in repairing my house or in cleaning my house, or in seventeen new credit cards or anything else with which you are bombarding me.  There must be folks who respond because I cannot imaging these companies would practice this annoying and wasteful practice if it wasn't profitable.

Over the years I have seen more than my fair share of junk. This house I live in used to belong to my grandmother. She died at 97 years of age but I would continue to receive offers addressed to her for LIFE INSURANCE for several years after she died. (Yes I was tempted, but the threat of jail time stopped me.) We received a lot from the military when the boys were in high school though they seemed to have the boys ages reversed. The military really wanted Tim at about age 13 but ignored Eddie until he was older. *shrug*.   Maybe Tim is bionic or something. Who knows? More for the recycle bin.

 We receive mail addressed to Steve's dad, who has never lived here, for my deceased aunt, who never lived here, for the boys, who no longer live here, and for those of us who actually do reside here. Today I had some sort of newspaper flyer that I didn't even look at, two credit card offers for the boys, one for me, a travel offer for my aunt who died four years ago, another refi offer, and something for Maggie and..... Hmmm. I had to open Maggie's. I just had to -- because as stupid as direct mail is, it's even more stupid when you apply it to Maggie's life.

It was a credit card offer from First Financial, a special offer for kids "heading to college" so they can learn how to use a credit card. No interest for a year, and then the typical/usurious rate of 29.9%. (so all that free interest spending would pay off for First Financial eventually) I read everything carefully and there would be absolutely nothing to stop Maggie from filling out this card, sending it back and heading to the mall.

Oh, that is, nothing except her inability to hold or use a pen or to read the card.

 There was also a special message for us, her parents.

The good news is, though, apparently she's headed to college. I have to admit, I feel a little sorry for whoever draws her as a dorm roommate but I wonder what her major will be.

Spidermom

"Will you walk into my parlor?" said the Spider to the Fly, 

                                                        (The Spider and The Fly 1929 Mary Howitt)

Maggie's complicated set of services and benefits is intricate and interdependent. In fact it is often referred to as a "web," which describes it perfectly.

Theoretically the web catches all the needs and issues. There are holes, of course but the strength of the web prevents anything from slipping through. Again, that is the theory, practical application varies tremendously. 

Part of the problem is that none of these strands see the entire web and none realize (or care) how crucial their role is to the whole picture. As long as they are doing their part it doesn't matter whether or not they understand the entire picture. But when one part fails it matters tremendously. Someone has to keep the web intact and in Maggie's life, that someone is me.

Generally the web works pretty well; but it is only as strong as the weakest strand. If one thing fails the entire web is compromised. Recently, a strand we never had to worry about weakened and now the holes in the web are gaping. Lately things look more like this.

I have been spinning new webs as fast as my eight spidermom arms can work, and supposedly things are will be back in place today, but it has been difficult. Maggie has been going without things she really needs, including some medications. The medications too are a web of protection for Maggie. It took years to find the right combination of things to keep her healthy. Now there are holes in that web too. We have to just wait and see if she gets sick from the gap.  

This old spider will not be happy if that happens. 

Pop Star Fangirl

Maggie is a fickle fangirl.

Those of you who have been reading this blog for a long time know of her love for Beyonce.  "All the Single Ladies" was her first favorite hit song. (and it still makes her react). Then she loved all things Lady Gaga. She also had a brief relationship with Carly Rae Jepson, because who didn't get caught up in the "Call me Maybe" fun.  But time and pop music waits for no woman.

Maggie has a new favorite. It's Taylor Swift. Taylor has been on every Maggie Mix and Maggie has always liked her, but these days Maggie goes crazy. She laughs her head off and waves her arms whenever she hears the chorus of We are Never Ever Ever getting back together. She likes the entire song and perks up as soon as she hears it, but when that chorus starts she sorts of gets herself ready to crack up, and then does.

This video from this morning catches it somewhat. But there are times her reaction is far stronger.

I don't know who "done Maggie wrong" but I can tell you this, they are NEVER EVER EVER getting back together. 

Tragic Flaw

Like everyone else in the world, I was shocked at the recent arrest of Olympic runner Oscar Pistorius and even more shocked that the charge was murder of his girlfriend Reena Steenkamp.

I don't know what happened. I know that a young woman is dead and that police had been called to the home previously for domestic violence issues. Oscar Pistorius is the only living soul who knows and he says he shot who he thought was a burglar. The police dismissed that theory immediately. I really want to believe it because I want it to be true.  It is possible, I suppose, but not very plausible.

The whole sordid story is very Shakespearean. He was the hero of his own making brought down by his own doing. He had a tragic flaw that led to his ruin. Pistorious overcame unbelievable adversity to compete in the Olympic games. A foot racer without feet. Unimaginable.Heroic.Moving. He was the epitome of grace and sportsmanship throughout the Olympic games. Now we see a darker side that is anything but.

 Many thought his "flaw" was physical. Many defined him by his disability. But there was more to the story. There always is. Usually it's something good that no one sees because they cannot see past the disability. In a TV movie he would be a senstitive artist or the savior of the town or something. But in real life that's not the case. Often there is no happy ending. Certainly not in this story, no matter what the truth turns out to be.

Human beings some in all shapes, sizes, colors, and ability levels. We cannot define them by any of those traits. Some humans are good. Some humans are bad. Some get caught in terrible circumstances. Some do terrible things. Some are tragically flawed.



Rest in Peace Reena Steenkamp

Good news shoutout!

Maggie will be 19 in a couple of weeks. In those 19 years, I have been fortunate enough to learn what amazing things happen in children's hospitals. Maggie was born with body parts disconnected or connected incorrectly, with some things missing and with duplicates of others.  Little by little, step by step, the doctors fixed what then could and improvised elsewhere. A generation earlier she wouldn't have lived a single day and now she is about to graduate from high school. It is truly miraculous.

These miracles happen ever day in children's hospitals all over the country. Perhaps they seem somewhat less miraculous as they become routine. But the miracles continue every day, even if the awe has diminished.

One such miracle happened last night. Maggie's friend Justin received his lung transplant. Think about that: A LUNG TRANSPLANT. Talk about miraculous!

Through the wonders of social media and the generosity of his parents, I know that he is out of surgery and likely back in the ICU as I write this. He still has a long road to recovery, of course, but the surgery is done and went well.

 Please send prayers/good vibes for Justin and his family. Include the family of the donor as well because in order for this miracle to happen, someone had to lose their life.

Godspeed Justin. You have received the greatest gift imaginable. Get better and enjoy it!

This picture is part of a big facebook movement to get shoutouts to Justin from all over the place. Everyone is welcome and encouraged to join in.  If you want to send him your good wishes email a picture to shoutout4justin@gmail.com or go to shoutoutjustin on facebook.

Happy Valentines Day

Maggie says Happy Valentines Day to all her friends out there in Blogland. Hope you had, have, or find someone to love.

Just a normal Wednesday

Over the past year or so I have been taking note of more and more things. Things that are not earthshaking, but "normal." It's true, in the abnormal world in which I live, there are days that are unbelievably normal.  Perhaps after so many years without normal days, I learned to appreciate and even celebrate the normal things.

Today is one of those days. 

I sent Maggie off to school looking great with her hair nicely brushed and everything where it should be. Today, Maggie is having her graduation picture taken. That's a very normal thing. 

And one I never ever thought she would experience.

Today is a good day. 

Slithering along

Today is the Lunar New Year. Gung Hay Fat Choy. It is the year of the Snake.

 And I start it with Health insurance troubles. Connection? You be the judge.

I have been communication with Anthem Blue Cross at least weekly (weakly) since the the other New Year. I have written before bout the imposed changes in the prescription coverage that is wreaking havoc with managing Maggie's care. They are requiring we jump through hoops for two of her 14 medications by utilizing their "specialty" pharmacy. However, that  pharmacy is so very special it will not work with Maggie's medi-cal coverage thereby denying her the medication she needs without a hefty co-pay. If medi-cal is involved the co-pay will be taken care of.  The will mean  ANOTHER $300/month that Maggie is somehow supposed to absorb.

I have completed forms, made phone calls and written long sad letters in an attempt to be exempted from this program that effectively screws Maggie. Forms are mysteriously "never received," phone calls go into a black hole and the letters are seemingly ignored. It is all very fulfilling for the consumer.

Over the weekend several of Maggie' meds needed to be refilled. I thought it strange that the refills weren't automatic, but sometimes things get out of sync. I called to fill four medications and talked to the pharmacist to avoid any confusion in case auto refills were pending.  The pharmacist, who I obviously know very well, gave me the news. Their efforts to renew the prescriptions showed Maggie's Anthem Blue Cross coverage was dropped effective December 31,2012.

Ummmmm. WHAT?

That, of course, does not make any sense at all. Nothing changed at the end of the year. We have paid our outrageous premiums, they covered all of her prescriptions in January, and, as noted, I have been in contact with them numerous times since January 1.

So I start out the year of the snake dealing with this bit of business. I decided it was best to hit it first thing and went through the five minute voice mail system, complete with several sales pitches, to get to customer service. After jumping through all the electronic hoops I hit a wall.  I was too early and have to call back after 8:30 AM. Silly me, I presume people in other time zones have similar problems and Anthem might accommodate frustrated customers to the East. But I was wrong - at least about the second part of that sentence.

So the year of the Snake starts the way the Year of the Dragon ended.  I am still breathing fire and they are slithering along in the grass. I have to polish up my parseltongue* and be their first caller in the New Year.

________________


*the capability to speak to snakes (parseltongue), known to be only a feature of those who are direct descendants of Slytherin. (from the Harry Potter books)

Survival of the IEP Fittest

IEP was fine, as I knew it would be. But it was exhausting too. The meeting started just as school ended. Maggie went home on the bus. The nurse was waiting for her. That gave me two hours until I had to get home and help the nurse with the lifting and procedures etc.  I told the teacher that and we muscled right through and finished in exactly two hours. I came home, helped Maggie and then took a nap for an hour.

It really is quite amazing to listen to everyone describe my daughter so accurately and so thoughtfully. One of the team members said, "Maggie continues to improve in EVERYTHING." It really doesn't get better than that. There were also lengthy discussions about Maggie's ability to lie and try to mess with test results. Of course her ability to do that tells them more about her intellect and understanding than anything.  I had to point out that if I were in a meeting with my sons' high school teachers it is unlikely they would be so excited about the student's ability to lie. But Maggie's team knows a strength when they see one even if its unconventional.

So Maggie's educational program is set for another year. Today I have to meet with the Regional Center to do her program for the non educational services.This one should be quicker though.

 Have a great weekend. It's a long one for us. Maggie gets Monday off school for Lunar New Year.

In other educational news I recently discovered I am HOMEWORK!  My blog is assigned  reading for a student at a Midwest university.

I might have to start using bigger words. .

IEP Day

Today is Maggie's IEP meeting.

If there's anyone out there that doesn't know what that means, I will explain it. For typical children, there is a curriculum set by the district or state. A child with disabilities often cannot keep up with the curriculum and needs something tailored to meet his/her specific educational needs. Every child receiving special education services has an Individual Education Plan (IEP). This is basically a road map for meeting the child's specific education goals outlining the services and accommodations the child needs.  The annual IEP meeting is the time the road map is written.  It is done by the IEP Team, which consists of those who will be working with the child or who the parents believe should be working with the child, representatives of the school district, the parents and sometimes the child themselves. (Maggie will not be attending.)

For many people the IEP meeting is a battle for services. That has never been my experience. Maggie has been very well served by the San Francisco Unified School District since she started at three years old. Perhaps that is because her needs are so extreme and her response to the teachers and therapists is so good, perhaps just because they want to do the right thing. Who knows. It's working, so I don't care.

The meeting is long, 2+ hours, and each of the people who work with her gives a report. That means the classroom teacher,  the orientation and mobility teacher, the vision teacher, the speech therapist, the AAC specialist, the physical and occupational therapists and more. Maggie has probably 10 different people who work with her. They all love her and want her to succeed and I am very grateful for their dedication.

Even though I don't expect any problems,  I am not looking forward to it. It's just a long hard meeting. This is where we take stock. I sit and listen to all her progress and realize another year has gone by. They are measuring Maggie against Maggie, as it should be. And she is always moving forward and she is extremely impressive and I am very proud.

 But I will sit in there and realize she is almost 19 years old and we are excited that she can make complex sentences, and sometimes position herself to assist someone lifting her out of her wheelchair, and that her behavior when they are changing her diaper is improving.

These are all good things.

But it's a long hard meeting..

Birthday

Hello after a brief respite. It's a crazy week for me. Lots of places to be and things to do. It seems I have meetings or appointments stacked up with little time between for posting.

Today is my birthday. I have been eating nonstop for days and really need to stop, but it's just too fun. As my friend Linda said last night, the holiday eating pretty much goes form Halloween to St Patricks Day. Almost home!

Maggie knew today was my birthday. She has been saying it on her dynavox for a few days. Mom, Wed February 6 is your birthday mom"  I made a video of her saying one of those sentences last night. This one was particularly long as she was saying goodbye to her nurse Fely for the evening and saying she would see her tomorrow on my birthday.

But the best was this card she made me at school today. The school nurse told me Maggie wrote all the sentences and she knew EXACTLY how old I was turning.  She's brilliant - or she knows how to make her "36" year old mother very happy.

I sure feel tired for 36.

SuperBowl day!

The city is posed and waiting for the game to begin. Hopefully the 49ers win and hopefully, no one goes crazy in the streets afterwards. One of those two things is very likely.

We are all set here. My mom, my brother Pat, and his wife Julie are coming over as is my friend Lori and her daughter Lily. That's perfect. A few people, but not so many that we can't concentrate on the game (and the commercials).

We have always been 49er fans, though I fully acknowledge that I am more into baseball than football. I was a die hard Niner fan when I was young. In fact my brother Pat and I went to the game where Dwight Clark made the catch. We didn't have tickets, but decided we HAD to be there and bought tickets off some kid that got us into the stadium, but didn't have a seat attached to them. We wandered for a while and finally sat down on about the five yard line, in a perfect position to see THE CATCH.

After I had kids I found it harder and harder to watch the hard hits. Tim played football for one year in high school and I sat in the stands with my eyes covered the entire time. Now that the boys are grown and won't be getting killed on the football field, I am enjoying the games more.

Of course the boys were always fans. Here's Eddie and Steve when Eddie was six months old.

When Eddie was in pre school, he had a jacket just like one that Joe Montana wore on a commercial. We pointed that out to him and from that day forward it was his "Jontana" jacket.  In the early to mid 90's, there was a defensive back for the 49ers who was also named Tim McDonald. Three year old Tim would introduce himself and tell people, "I'm Tim McDonald, but I'm not the one who plays for the 49ers."

 Oh, thanks for clearing that up, kid.

Maggie is ambivalent about the whole thing, though she will greatly enjoy the company and the revelry. When everyone cheers or gasps, she thinks it hilarious.  So she wins either way.

GO Niners!