Power Soccer

Maggie's wheelchair was fixed and she attended the power wheelchair soccer clinic yesterday. There were several players in attendance, and unlike Maggie, everyone of them was very proficient at driving their power chairs. The players and several coaches, were zipping hither and yon through the drills and eventually the game itself.

Maggie has very rudimentary power chair skills. With a ton of prompting she can go forward, left and right. She cannot go backwards, though and in order to make the chair do that one has to physically lift her head off the controls and reset the chair. In addition she still needs frequent suctioning. Accordingly, Maggie needs someone right next to her when she’s using the power chair.

There were a number of volunteers there and her PT Barb did it for a while, but then it was my turn. It was stressful. The other drivers were very adept at avoiding me, but keeping track of all the different moving vehicles as well as Maggie’s navigation and medical needs was hard work.

Maggie played goalie for a few minutes. She shut them out of course. (Ok, she was only in for a few minutes and there were no shots). The other kids in chairs rallied ‘round her to help when the opposing team got close and one of them stole the ball and headed down to the other goal and scored.

Maggie has to concentrate really hard to work that chair and the sensory overload made that difficult. After a while it was clear that she had enough; you can see Maggie wilt after expending a lot of physical or mental energy, and this required both. She lasted longer than I thought she would and she hit the wall about 10 minutes after I did. Everyone was a wheelchair user, but Maggie was the most complicated, as usual. That was a little tough for me, I forget that even among her “peers” she stands out for the level of her disability and medical stuff.

Her trach care, vision issues and lack of stamina put her behind the eight ball, but I doubt anyone else had more fun than she did.

Maggie using her soccer basket as a foot rest.

Soccer Mom

Maggie is playing soccer on Sunday. There is a power wheelchair soccer clinic at Kezar Pavilion. If anyone reading this uses a power chair, join in. It is free and open to all power chair users. Maggie is a rookie, but I expect there will be many who actually know what they are doing.

There is one problem, though. The power chair Maggie uses is on the fritz. We are hoping that it is a battery issue and can be repaired.

Apparently they knew about the wheelchair issue a week or so ago, but due to a communication breakdown no one ever came to pick it up to repair it. I received a rather sheepish message from her Occupational therapist (OT) the other day. He explained that the chair was still at school and they did not have any way to get it to the Wheelchair shop. He wondered if there was any way I could transport it because I have the wheelchair van. As soon as I got the message, I called him back and assured his that was no problem.

It makes me laugh. Maggie gets services from every conceivable public agency. Every service is free of charge. We have a ton of expenses because of Maggie, but we do not have to pay for the services. They NEVER ask me to do anything. I offer when I remember, but generally, they take care of everything. My boys went to Catholic school, for which we paid considerable tuition. Parents understood that part of the deal involved parent involvement and volunteer hours. I was very active in both the grammar and high school parents associations and happily took part in several volunteer projects. Hence, I was a regular volunteer at the school of my two able bodied, typical developing sons and very rarely volunteer at Maggie’s school or any of the agencies. Strange. Now, if I'm gong to be a soccer mom, I have to get involved. I'm not bringing joice boxes, I'm bringing a 200lb power chair.

Of course, the agencies are not really set up for it and the school does not really reach out to the parents of the most involved kids. That is not an excuse, merely an explanation. When I arrived at school to pick up the chair I assured Cliff, the OT, and all the other adults in the room to hesitate to ask me to do anything. After 14 years at Catholic schools, I am well trained in volunteering.

Yesterday I loaded up the power chair and drove it downtown to the repair shop. I have to head back down there today and hope it is fixed. Maggie might have a future in power wheelchair soccer. Of course, she is still learning the use of the chair so the speed is set very low.

That’s ok; she can do the super slo-mo replays.

Have a great weekend.

Say what???

Maggie is 15, and 15-year-old girls can be mean. Maggie is not immune from this despite all her disabilities and medical issues. Apparently, she was mean to her friend Sierra the other day and really hurt her feelings.

I have written about Sierra before. She is a girl who befriended Maggie – really the first to ever do so. Maggie’s world is limited socially because of her situation. All of her friends were always other special ed kids who had parents with whom I liked to socialize. They were “play dates” way past the age your mom should be picking your friends. The rest of her friends were the adults in her world. Maggie did not have any control over her social life. I knew that and wanted it to be better, but if I tried to control that, I was manipulating it.

Then she met Sierra. I think it was last year that Sierra and the other girls started coming into Maggie’s class. Sierra led the charge and Maggie now has several typically developing friends. That has done wonders for Maggie. She likes pop music because Sierra and the girls like it, she wants to wear certain clothes because Sierra and the girls wear them. All appropriate social stuff for a 15 year old.

Maggie used her communication device to “diss” Sierra in speech class the other day. Sierra does have some learning issues and she attends a group speech class with Maggie. Everyone in the class prepares a sentence to share. Maggie uses her communication device and the other students use pen and paper. Then they take turns sharing. As soon as Sierra started speaking, Maggie hit “whatever” on her talker and then “Speak Up, Sierra.” Sierra’s feelings were really hurt.

Maggie is getting better at her communication device and she KNOWS exactly what she is doing. Yes, that is a huge breakthrough, but turning on Sierra is not smart. According to the nurse who was with her it was very clear that Maggie knew what she was doing and was not kidding. Sierra was shocked. Maggie used her talker to apologize, and Sierra forgave her.
Maggie is learning more and more the power of communication, not just positive, but negative. Of course that is important because as the saying goes “words hurt”, even if they are coming out of a synthesized machine. She may be exploring that concept and Sierra is a trusted place to practice, but Maggie has to be careful she does not lose the friend that changed her world.

The thing Maggie has to learn, and probably already knows, is if she wants people in her world she has to be MORE welcoming and nicer than others are. Her wheelchair, trach, suction machine, communication device, feeding tube, attendant and just the amount of space she requires in a room keeps people at bay. She will have to compensate for that with kindness to make people feel comfortable. Maggie is very good at using her smile to put people at ease and now she has to learn to use communication the same way.

It is just teenage, middle school drama, with a techno-twist. Maybe they can do a sequal of "Mean Girls" with a special ed, augmentative communication theme. Do you think Hollywood is ready for that?

family and FAMILY

Everybody defines family differently. In my world family has several meanings. There is my (lower case) family, my relatives, which includes several tiers and my FAMILY, which are the people I will do anything for and I know will do anything for me. Most of my family are included in my FAMILY, but other people find their way into that second group as well.

The tiers of the (lower case) family extend out from closest/immediate to distant relatives. As our circumstances change different people move in and out of different tiers. When you’re a kid that first tier is you parents and siblings. When you get married and have kids of your own, they move into the first tier and the siblings each form their own sets of tiers with their own immediate families. For those who don’t marry and have kids, the first tier might remain parents and siblings or might change completely to friends and co-workers.

For me the first tier includes my husband, our children and our parents. The next tier is our siblings and nieces and nephews and the third tier is generally other people we’re related to, aunts uncles cousins etc. That third group is enormous for us. Those delineations are not hard and fast, just general descriptions. Obviously the interaction is less among those in the furthest tiers. Each of them have their own responsibilities in their own immediate families. It is pleasant to hear from them and catch up on things, but they are generally not part of my everyday life.

Then there is my FAMILY – the people I count on and those who count on me. That includes my immediate family and siblings and to some extent nieces and nephews. I say "to some extent" because they are growing up, moving away and changing their lives. They will develop their own closer circles, relegating me to a more distant tier. That's the way it's supposed to work.I say "to some extent" because they are growing up, moving away and changing their lives. They will develop their own closer circles, relegating me to a more distant tier. That's the way it's supposed to work. It also includes friends who have been there for me in hard times. There are some people out there that I KNOW will pick me up if I fall. That is comforting. It comes with responsibility, though. I have to be prepared to be there for them too. I am and I will.

Because everyone has different people in their FAMILY they might not understand why “person x” is in mine. That’s ok. I don’t have to explain it and probably couldn’t if I wanted to. Besides, if they’re asking why, I know “person x” cannot rely on them and perhaps needs me even more.

No matter how big or small your family is, everybody needs someone in their FAMILY.

Coffee Clatch

I do a lot of volunteer work. It is good for me and good for the community. Of course, it is hard to measure the contribution to the community when you are sitting on the board of a nonprofit and attending numerous meetings. Meetings and fundraising are absolutely necessary so those on the front lines can do their work; but the contribution does not feel very real, it’s intangible. Yesterday I was involved in a simple “hands on” event that meant a lot to the people involved. We simply provided food and a little respite for families of pediatric patients in UCSF Children’s hospital. The families were very appreciative of Coffee, pastries, fruit and the opportunity to mingle with other families. Witnessing the effect and appreciation first hand made a big difference for me, too.

The Family Advisory Council at UCSF Children’s Hospital sponsored this event. I have been part of this group for a couple of years. The Council is comprised of several family members like me who have experience with UCSF Children’s hospital. Most of the parents on this board have children who are “frequent flyers” at the hospital on an ongoing basis or had extended stays in the past that are now resolved. A couple of them have lost their children and a couple of them were labor and delivery patients who had lengthy hospitalizations themselves. In addition to the family members, there are hospital staff members on the council from most of the disciplines serving the children on a regular basis. Not the individual services/specialties, like Pulmonology or neurosurgery, but nurses, residents, social workers and child life specialists. It is a good representative sampling of the people running around the pediatric floors on any given day.

UCSF Children’s Hospital is a 180-bed hospital located on the 6th, 7th and 15th floors of the UCSF Medical Center. It is an amazing place with the best care possible, but it is overwhelming for parents, especially the physical layout. In order to get to the cafeteria on the second floor, you have to be able to comfortably leave your child’s bedside for 20 minutes or so, which many parents cannot or will not do. (I’m one of them) Once you get there, you are in an enormous place designed to serve the entire medical center. You can feel very alone is a room full of people.

A new freestanding Children’s Hospital is in the works, but it won’t be completed until 2013 or 2014. By the time it’s done, Maggie will no longer be a pediatric patient. A lot of the family issues will be addressed by the free standing dedicated pediatric center. Everything in the new hospital will focus on children and the unique issues presented by pediatric patients. The Family Advisory council has been focusing a lot of its time providing input on the design of the new hospital to meet the real needs of families of patients. That has been interesting, but it too is intangible. Will I even notice if the parents seating is within reach and sightline of the patient as I suggested? No, because 1) Maggie will never use these rooms and 2) if we were in there and it wasn’t set up that way I would just grumble and move it around as most parents would. (My point to the designers: Parents do not need their own “privacy zone” in the pediatric hospital room. They are there simply to care for their child.)

Providing that little break yesterday, right on the 6th floor, gave families the ability to grab a quick snack and we even delivered to the rooms of the patients whose families could not leave the bedside. There were at least 30 families in and out of the room and many others served in their rooms. It was also an opportunity for these families to mingle. Not everyone wanted to, which is fine, but for some it was the chance to get out of the room and commiserate with other parents in a similar situation.

I watched one little foursome chatting with each other. It was an unlikely group from my purely observational viewpoint. A white man in his mid 50’s was chatting with a Chinese woman who had some difficulty with English, a very young African American mother and another white 40ish woman with a US NAVY shirt on. I have no idea what the stories of each of these people were, but I bet there are not too many situations that would find them exchanging pleasantries. Having a sick child or grandchild is definitely an equal opportunity situation, every parent can relate to every other parent on the most basic level. Despite the differences in their age and appearance, each had the exhausted almost vacant look that I know I get every time Maggie is admitted to the hospital. As I watched them chat, I notices each looked just a little less vacant after spending a little time together. That was a very tangible reward for me.

Times being what they are, funding for this event was very difficult to obtain. The hospital is strapped like everywhere else. Becky, the Child life specialist who organized this, told me she spent $350 on the food, but it is unlikely she will get that money again. I have to believe that we can get bagels, donuts, fruit and coffee donated once a month. Even donors like to know their contributions are going to tangible things. Caring for families with sick children is very tangible indeed.

So now, it is my mission to hit up the local bagel places and grocery stores for donations to make this event happen at least once a month. It will be good for me and this time I KNOW it will be good for the community.

Special Olympics

Maggie at Special Olympics May 2008

I was disappointed to hear President Obama joke about his low bowling score with a Special Olympics reference. Very disappointed. Here is a president seemingly so tuned in to groups of everyday American often forgotten or overlooked. That little slip, and it was really nothing more than that, reveals that his fine-tuning does not include the disabled.

B U M M E R.

Disabled individuals and their families are often isolated because of their situation and excluded from everyday activities. This is not out of unkindness or malice; instead, it is the reality of the disability not working with the activity. The Special Olympics provides recreation, competition, inclusion, fun, camaraderie and entertainment for thousands and thousands of disabled individuals all over the world. Without Special Olympics, these individuals would continue to be excluded. To quote their own website

Dignity, acceptance, and a chance to reach one’s potential – these are human rights worth promoting for everyone. Since 1968, Special Olympics has been bringing one message to the world: people with intellectual disabilities can and will succeed if given the opportunity. (http://www.specialolympics.org/What_We_Do.aspx)

Can the children compete with athletes who are not disabled? Generally, no. Are there exceptions to that? Of course.

Power wheelchair race

But here is a newsflash: that is not the point. The point is to provide healthy competition and fun in an environment that works in the disabled world, not in the typical world. By doing this the Special Olympics raises awareness and opens doors for acceptance. They are, in their own words, “Creating a World of Acceptance.” The success of Special Olympics is legendary.

Those making fun or making jokes about the Special Olympics have not opened their heart and minds to the realities of the world of the disabled, the human dignity involved or the wonders of the Special Olympics. Now, it appears the President is among them. Bummer again.

President Obama has already apologized for his comment. I accept that apology on behalf of my daughter and myself. I hope that this slip will create a dialog that will remind everyone of the human beings involved in Special Olympics. Those human beings, both the athletes and the staff, are working as hard as they can to make a difference in the world in their own ways. That should be applauded, not ridiculed.

Take a moment today to consider those involved in Special Olympics. Contribute something if you can. It doesn’t have to be money. It can be time and, probably most important of all, it can be respect.

Stop making fun of it and you just might learn something.

Using your Head

Maggie has been working on driving a power chair for several years. This is an incredibly difficult thing to master, especially for one with limited motor control. We do not own a power chair but there is one at school. It belonged to a student who passed away some years ago. Repairs and updates to this chair are tricky because they cannot be attributed to a single student. Through the dedication of the therapists, their ingenuity and their endless supply of duct tape, the chair continues to be an asset for Maggie.

Determining how to best maneuver the chair is a huge step. I really hoped Maggie could use a joystick on the arm of the chair, but that was not to be. She gets the concept, but cannot sustain the control over her hand in one position. The movement that way was very start and stop. Roselle and Cliff, two different types of therapists worked together with Maggie and the chair and found the best way for Maggie to access the power of the chair. She uses her head and switches on her tray. Leaning with her left temple makes the chair go and taking the pressure off make it stop. Turning right and left is accomplished by waving or sliding or placing her hands over “proximity” switches mounted underneath her tray. They are called proximity switches because all you have to do is get near them to activate them. They are placed on the left and right or her tray so she just moves the arm on the side of her body that she wants to turn. Reverse is beyond our technical or conceptual capabilities at the moment. (I can make the chair reverse, but we do not have Maggie doing that yet)

Maggie has become quite proficient at this. It is slow going, and certainly, some days are better than others are but she gets it. Maggie can do it herself for the most part but also responds to instructions. For example, “Maggie, you’re going to hit that pole, you better turn right.” And she does it – usually. Occasionally she gets and evil grin and just heads for the pole and we have to hit the KILL switch on the back.

The level of trust between Maggie and her therapists is huge. Maggie has never been able to move herself through space. She has had to depend on others to do that. This gives her the power to control some of that herself, but she has to trust the people working with her to overcome the fear of the unknown, and her limited visual capabilities.

I would say it has worked. Maggie can literally drive the chair with her eyes closed. I received this picture of Maggie leading the Chinese New Year parade at school. The pic is grainy, but Maggie is wearing the Lion Head while driving the chair. Roselle is next to her prompting the turns etc.

Maggie is always using her head!

Top of the Mornin'

Blessings on the Feast of St. Patrick's to everyone.

Maggie's real name is Mary Margaret McDonald. She is the only Irish American in her class, including adults and she makes it her business to spread that Irish cheer. Maggie left for school with soda bread for the teachers and the bus driver and she was dressed like a leprachaun. Steve handed her a shamrock as she was boarding the bus. It was a bit over the top, but she was having fun.

I tried to take pictures, but the camera's display wasn't working and I didn't realize it was on the wrong setting until after she left. It's a bit fuzzy, but that's life.

Here are a couple of Irish Blessings to get you through your day. They have slightly different feels to them

One - Traditional

May the road rise up to meet you,
May the wind be ever at your back.
May the sun shine warm upon your face and the rain fall softly on your fields.
And until we meet again, May God hold you in the hollow of his hand.”

two - Toast

May those who love us, love us;
And those who don’t love us, May God turn their hearts
And if he doesn’t turn their heart, may He turn their ankles
So we’ll know them by their limping.

Have a grand day everyone. And lookout for the limpers.

A Star is Born

Maggie does not watch television or movies. She is visually impaired. Maggie can see fine, but the nature of her visual impairment is such that she just cannot process the moving images on a screen. It is too fast for her. She often looks away rather than look at the screen.

This morning I went with her class to the Planetarium at the California Academy of Sciences. I was not sure how she would do with it. The show was fantastic. The planetarium just opened and the room is designed perfectly for its purpose. The kids in the wheelchairs entered from the top floor and had perfect seats at the top or the very steep room. (However, I suspect every seat was perfect).

The show started out in the daytime with a view of the very building in which we were sitting. It became dark and we “travelled” first to the moon and then all around the solar system. It was very cool. I looked over at Maggie next to me; she loved it! The celestial sky moved slowly and she was drinking in the constellations and the planets. We learned about the rock planets, Mercury, Venus, Earth and Mars, and the gas giants Saturn and Jupiter. The room, filled with schoolchildren, was quiet. The music was soothing. It was very relaxing.

Very.

Relaxing.

I feel asleep before we got to Uranus and slept right through Neptune. When I woke up they were talking about Plutoids (poor Pluto – it had a MUCH bigger role when I was a student).

Though it lulled me to dreamland, Maggie was enthralled. I think we found the right pace for her. She was gazing at the stars with a huge smile on her face. We “travelled” back to Earth and eventually back to the building we were sitting in.

I always knew Maggie was a big picture girl, I guess I never realized how big the picture really was.

Circle of Friends

Like many people, my life can be separated into various chapters; family, childhood, high school, college, working, law school, professional life, marriage, parenting, and, in my case the world that I’ve become part of because of Maggie. Each of those chapters overlaps with some of the other, but each is separate and distinct in its own right. I am happy to say that I have circles of friends in each and while those circles overlap some, for the most part they too separate and distinct.

In the past 24 hours, I have had contact with someone from every one of those circles. That makes me feel rich indeed.

Today is a special day in several of these circles. My wonderful friend Deborah is celebrating her birthday today. We have been friends since my sophomore year in college in 1976. We were roommates for that bicentennial summer but other than that have never lived in the same city. We often joke that is the reason we have remained such close friends. Happy birthday Deb! Lori is someone I met in Maggie’s world. We have been friends for 13 years since her twins were babies. She is celebrating a resolution of an ongoing battle with her ex-husband and this Friday the 13th is a lucky day for her.

Tonight I will meet with three women I know from my professional life. This is my “club”. The “club” does not do anything, does not stand for anything, and does not meet very often. There are only four members but this “club” has been meeting for almost 25 years. When we started in the mid 80’s we all worked at the same law firm where I was an attorney, Pavan and Kathleen were paralegals and Anna was a secretary. Pavan went to law school shortly thereafter and has been an attorney for about 20 years now. We would get together for dinner every couple of months cooking elaborate dishes for one another. One by one, we left that firm, but we continued to meet regularly. As some of us had kids, the dinners got less and less elaborate, more infrequent, and finally we just met for drinks and appetizers. Sometimes we let others join us but it never really clicked with anyone else. We decided we were an exclusive club and membership was closed. We do allow guests periodically.

The club is coming to my house tonight. Steve is out of town and I cannot really leave Maggie alone with this nurse, so the girls are coming here. We are getting back to our roots, but it still will not be elaborate. There is one rule, no gossiping until all members are present. I hope no one is late. There could be an issue when my sons arrive home for the weekend. We have a strict “no boys” rule, though we have generally made an exception for offspring. In reality, I think the boys will be happy to make themselves scarce for an hour or so. GAH! Mom and her friends? No thanks!

Another group of people are those who disappeared when Maggie was born. I know some of that is just life and time and the changes that come with both. However, for some it was a choice to distance themselves from our situation; that is their loss. However, knowing they are out there makes me treasure even more the many circles of friends that I do have.

I feel very rich indeed.

Bon bons and soap operas

Today is get better day. I have been sick all week. I caught Maggie’s virus and wow, it knocked me for a loop. I tried to ignore it on Monday and stayed in all day Tuesday. I tried to ignore it yesterday and I’m home all day today. I hope that staying in today will knock this out once and for all.

I hate sticking around here when I don’t have to. There are so many days that I have to stay close to home to finish something or wait for somebody, but not today. I do not have any work projects at the moment, the house is clean (but there is a pile of laundry to do) and I am not expecting any deliveries.

It is actually unusual that there aren’t deliveries or somebody at the house. Today is Thursday and it is the first time all week I do not have to wait for a delivery. The g-tube supplies and the food came yesterday, the diapers and those supplies came Tuesday, the trach supplies came Monday and the oxygen was delivered last Friday. Someone has to be home to collect this stuff and they all give that “delivery time window” that never really applies. Actually, the diaper delivery will leave them on the porch but everyone else needs a body here.

Caring for Maggie is as much or more hands off work as it is hands on. There is a lot of “management” involved. I have to keep all the supplies flowing, satisfy all the requirements for the insurance, medi-cal, the Regional Center and California Children’s Services, deal with the school district, arrange the nursing, do all the nursing paperwork (that’s about 10 hours a week by itself), keep the elevator, wheelchair and other equipment serviced etc, and program her talker every night. There are also the almost daily trips to the pharmacy or calls/visits to anyone of a number of medical professionals or runs to the school. This is in addition to the emergencies and the lifting, feeding, diapering, suctioning etc that I do when the nurse isn’t here or help the nurse with while she is.

Of course, that is just the extraordinary stuff; I still have the regular household responsibilities that everyone else has.

Sometimes I even get to just be mom.

Not often enough, though.

This is why I get a little more bugged than most by comments suggesting I have "nothing to DO” while Maggie’s at school. Or by people volunteering me for things because I have free time. I do not have any free time. Zero. I am not even familiar with the concept of “free time”. Because I am stuck in the house so often I find time for writing and other projects, but I am not free to do what I want. I have options within my narrow range of opportunities, much like a person who works full time. Only this job never stops.

So today, I will just concentrate on getting better and be happy that the doorbell will not

ring. Maybe I'll just eat some bon bons and call it a day.

Hob Nobbing

Today is Arbor Day. The City of San Francisco is committed to increasing the number of trees in this city and, over the past five years has planted over 25,000 new mature trees. Today a tree planting was being dedicated to Dr. Ellen Wolff who was a champion for disabled and under served children in San Francisco for many years. California Children's services asked if a few kids could come down for the dedication.

It was done rather last minute so it was too late to organize a field trip and arrange for transportation etc. The teacher asked if I would bring maggie down to the ceremony and I agreed. He was going with another student but the nurse could not leave the school with Maggie because she has another patient who needs her. I said sure, I can be the nurse and bring Maggie down there.

We were surprised to see San Francisco's Mayor Gavin Newsom there. He came over to greet Maggie and Yu Tao, her classmate and agreed to pose for a picture with them. I snapped this, but sadly I cut off the teacher's head trying to get my cell phone camera to work.

Maggie took part in the ceremony and shoveled dirt into the hole where the tree was planted. She got some help from Mr. B, the teacher.

Maggie was unfazed by the Mayor, but she likes shoveling the dirt. Hmmm, Maybe she is ready for politics.

No tip required

Maggie started choking last night.

I was at the computer just outside her room. The nurse was rinsing something in the bathroom sink. I heard a strange sound and thought Maggie needs suctioning, but the sound was different. I ran in there and she was really struggling. I started the suction but nothing was improving. I called for the nurse who could not hear all this with the water running. (A separate concern.)The trach seemed clear but Maggie was wide-eyed and clearly gurgling. I suctioned her mouth, but nothing was improving. The nurse was giving her oxygen and I kept trying different suction methods to no avail. I was confused but finally realized what was going on. I said, “she’s choking.” This is not a normal thing for Maggie because she does not eat by mouth. Generally, nothing goes into her mouth at all.

Maggie had part of a 5ml syringe in her hand. I asked the nurse where the other part was. She said Maggie had the whole thing, but she could not choke on that. It is too big to go in her mouth. Nevertheless, I knew right then that she was choking on the rubber tip of the syringe. We continued to work frantically – well I was frantic; the nurse seemed to be operating in slow motion. (That may be my perception only). I presume Maggie finally swallowed it because we never found it, but the crises passed. It was a very frightening few minutes. Maggie was very scared and fighting back tears. The nurse found the syringe plunger on the floor and, sure enough, the rubber tip was missing.

That should be the end of it, but with Maggie, we may still have things to worry about. Generally, when you swallow something it will just make its way through your system in a day or so; but Maggie’s system does not work very well. She swallowed a tooth a few years ago; it never came out and I did not really think anything of that because I figured we “missed” it. Wrong. A year or so later she was having various medical issues and the pulmonologists were stumped. A strange mark on an x-ray had them call in the GI docs. It was the tooth. The tooth never dropped into her stomach; it was stuck in the lower part of her esophagus. They had to go in and get it out in what was probably the most expensive tooth extraction in history. The tooth fairy needed to leave A LOT under her pillow that night. Now I have to hope we do not have to do the same thing for this. The tooth was organic material and caused a big problem. The little rubber tip of the syringe plunger is not organic and can only be worse.

Last night would have been much worse without the trach. I am certain it saved her life. She was choking, but she could breathe because of the trach. I have a love/hate relationship with her trach.

Today it’s more love than hate.

Low Tech Mom in a High Tech world

I was sitting at my computer last Thursday trying to finish things up for the big fundraiser. A screen appeared saying “Miss Emily” was trying to contact me. My first thought was this was some sort of pop up ad and was just going to close it when I realized I was getting a skype call from our friend and Maggie’s former teacher, Emily. We never called her “Miss Emily” and it did not register at first.

Emily is in Poland now teaching at an international school, When she left I set up the computer with skype and a camera so that Maggie could see Emily and communicate with her. We used it a couple of times before, but not for several months. I could not remember how to make it work. I clicked on skype and her face appeared on my screen. However, I could not hear anything and began frantically pushing buttons telling her to wait. It was comical. Emily was laughing at me and I presumed she could see me. I could see her responding, but there was zero sound on my end.

I wondered aloud if she could hear me and she started hitting her chin. I cracked up – that’s Maggie’ sign for “yes.” Of course she would sign that to me. She knows that’s how I roll. Emily was using low tech while I fumbled with the high tech.

Emily, of all people knows Maggie’s signs. She relied on them to communicate with Maggie as Mag was learning her dynavox. We could all frame every question into a yes or no so that Maggie could answer. Her yes/no was and still is very reliable. There are times, of course, when Maggie toys with us and says no to everything, or when she wants to please and says yes to everything; but generally the yes/no response is a good low tech way to communicate.

I insisted when Maggie was little that she needed some way to say yes and no without a machine. Machines are inherently unreliable especially when they depend on people like me to charge and program them. I wanted her to be able to answer a question even when her mom forgot the cord, or the battery was dead or any number of other scenarios.

There was great discussion about what would be an appropriate sign for yes and no. ASL was not an option because of the fine motor skills required. One therapist wanted her to smile for yes and frown for no, but I balked at that. Maggie had several surgeries. I did not want her to have to smile if I asked if something hurt.

I’m not sure how we came up with the hand to her chin for yes, but it worked beautifully. Her no is an emphatic hand down – to her leg or the tray of the wheelchair. She loves to smack her hand down when she says “No”.

Once Maggie learned the signs she would use for yes and no, she had to take the next leap into applying them to actual questions. She knew the signs for the words, but didn't really know what the words meant in the world. I could ask her how do you say yes and she would dutifully put her hand up to her mouth, but if I asked her , “is your name Maggie” she didn’t know to use the “yes” sign to answer. That abstract step is difficult to teach. We worked on that for a while.

Once again, the remedy was low tech – she needed another kid to communicate with her. She figured it out from her brother, Eddie who asked her a question and followed it with yes or no? Do you like Eddie, yes or no? You could see her figure it out. Her face lit up and her hand flew up to her chin for a YES response. For a while, we asked every question with a “yes or no?” at the end. That dropped off naturally as she no longer needed it.

As I watch Emily using the low tech signs that are so reliable, I considered just having a conversation where I asked her yes/no questions. But that seemed stupid. As the $6 million man said, WE HAVE THE TECHNOLOGY.

I stopped fiddling with skype and the webcam and thought more basic. Finally, I realized the speakers on my computer were on mute and voila, we were connected. We had a nice long chat with complex multi-word responses. The high tech prevailed, but I knew I could have communicated anyway.

Maggie and Emily - last day of elementary school 2006. (Note, no trach yet)

Your Tax Dollars at Work

As Maggie’s favorite fictional character Junie B. Jones would say, “I have frustration in me”

Today was the annual meeting with the social worker from the Regional Center. This meeting always happens right around the birthday of the client, which for Maggie was two days ago. Hmmm. Maybe that is why her birthday is often so melancholy. I know what’s coming.
The Regional Center is a private agency that contracts with the State of California to provide state services to the developmentally disabled, like Maggie and thousands of other Californians. They are the gatekeeper of sorts when it comes to services. They can open that door and get what a client needs or stand there shooing folks away. There are many of them in various regions of California (hence the clever name). Ours is the Golden Gate Regional center, which is, by reputation, better than many.

California, like many places, is really screwed up financially. We may actually take the cake in that department; because, in addition to the financial crunch being felt across the country, California has an inept and ineffectual state government that spends more time deadlocked over issues than anything else. I think about five legislators are really running the entire state. And they are doing that with smoke and mirrors. Reimbursement for nursing is being cut 3%, which is tolerable, but there is an indication of more cuts to come, which is not.

The annual meeting is designed to determine what needs the client has and what will be done to meet those needs. The social workers are stretched beyond capacity and generally cut and paste reports from previous years to get the paperwork done and signed as quickly as possible. It doesn’t have to be right, just complete. They comply with the letter of the law, but no one -- and I mean NO ONE -- is paying attention to the spirit.

The documents were already filled in and I was just supposed to sign them indicating everything is peachy keen and working perfectly.

Except it is not.

And I didn’t.

The poor woman was somewhat flummoxed. She was very nice and understood my concern. She wanted me to sign it anyway and PROMISED to change it when she got back to the office.

Sorry. No can do.

She will email it to me for review before I sign. That is better. Nevertheless, the documentation itself is all so silly.

I feel strongly that documentation should be correct, especially as Maggie approaches adulthood. I understand the budget constraints. I understand that not everything will be fixed. Concerns should be documented even if they cannot be addressed by the system. Seems logical enough. Bzzzzzzzzzz, wrong. For example, there is a section called “unmet needs.” That would seem to be the perfect place to list needs a client has that are not being addressed. But no, that would be logical and therefore BZZZZZ.Wrong again. You just cannot do that.

You can only use the unmet needs section to address to needs that the state is already capable of addressing. If there are needs outside of the current array of services, they are not “needs” as defined by the state.

I’m sorry…what? That means there are no “needs” outside of the system. And we all know that the system is absolutely perfect and operates like a well-oiled machine.

Pssst…..your well-oiled machine is leaking. Sproinggggggg.

History

Maggie apparently has some fans. Yay! And there has been a request from two of the coolest fans, eight-year-old twin girls. They want to know more about Maggie’s past and how she learned some of the things she knows. I am flattered and delighted to try to answer these or any other (appropriate) questions.

But I have a confession. I am not sure how Maggie learned to do some of the things she does. She is a smart girl, that is for sure. I am going to post stories from the past occasionally. Maybe we can figure it our together. The best place to start is the beginning.

Maggie’s incredible medical journey began when she was developing as a fetus. The best estimation is somewhere between 6-8 weeks into my pregnancy, something went awry. It’s not anyone’s fault. Sometimes that is how nature works. Because that is so early in the pregnancy, there are some very central things developing; and I mean that literally – the center of your body is forming. Almost everything that is different about Maggie is right in the center of her body.

Of course, we had no idea this was happening. From the outside, everything seemed fine. I went to the doctor regularly, took care of myself and did all the tests. The tests showed everything was fine and that we could expect a healthy baby girl. Obviously, the tests were wrong. That was fifteen years ago and the tests only went so far. I do not know if the issues Maggie had show up on tests today or not. We were very excited to learn we were having a girl. (After two boys, we were looking forward to a change.) I am glad we learned that early and celebrated it. There wasn’t much to celebrate the day she was born.

Our first indication of a problem was about an hour after Maggie was born. She was about 4 weeks early, so the delivery room was full of doctors and nurses. However, that did not worry us; her older brother was also born a bit early. We knew the drill. Or so we thought. They took the baby away to the NICU, checked her out, cleaned her up and brought her back. But they didn’t come back. Instead the doctor showed up at the door and said simply:

“I have to talk to you about your baby.”

We knew right then that things were not going according to plan. I will never forget that moment if I live to be 1000 years old. That was the moment we knew; our lives had changed forever. We were frightened ,worried and very sad.

However, we did not know then that while Maggie would face unbelievable challenges, the changes she would bring to our lives were just that: changes. Some were bad, some were good; and all of them have been an adventure.

Maggie was born on March 3rd and had to stay in the hospital until May 21. Those 11 weeks in the Neonatal Intensive Care Unit (NICU) were our first introduction into our new world. We saw unbelievable things, both good and bad. Over those weeks I learned when and what to question and what to accept. The nurses helped me trust my maternal instinct and encouraged me to speak my mind. I’ll bet they regretted that.

Once I found my voice, I never shut up.

Happy Birthday Maggie

Today is Maggie actual birthday. She was born 15 years ago, on March 3, 1994. That was a hard day in my life. I've written the whole story, but it's too much to think about now.

Yesterday was frustrating. Maggie stayed home from school because she is still ill. It was special olympics day, so I took her there myself. I figured she could do that much and then come home. She was dressed and ready to go in her new basketball socks. We arrived at the gym and there was no way to get close in a car. It's very pretty, set way back in a grove of trees. It looked very far away in the downpour. The kids had to walk through the rain about 50 yards to the gym. The path was full of puddles; I could see some of the kids feet were completely submerged. That was daunting.Pushing a wheelchair through standing water is very difficult.

It was also on a fairly busy narrow street and there was no where to unload the wheelchair. I called the nurse on the cell because the class was already inside. I explained my dilemma. She said they had a hard time getting the other kids in because the path was also very steep. I asked where the bus unloaded and she said they just blocked traffic for about ten minutes. It's one thing for a school bus to do that and quite another for a personal vehicle. Besides, I couldn't just leave Maggie out there while I parked the car. The closest spot was about three blocks away.

The nurse offered to come and help me, but I said, I think we have to skip this. It was POURING rain, Maggie was sick, her eye was still swollen shut, and the access was just ridiculous. Somebody was a little unclear on the concept. Special olympics should not have access issues.(No one's fault it was raining, but it's the first week of March and that's entirely likely).

Maggie was NOT happy with me, but sometimes mean moms have to make the tough calls.

I needed some Irish tea so we went to buy that. We parked inside and she never got wet. The store was a bit difficult to maneuver in the wheelchair, but we managed. She was wiped out when we got home.

In fact, she's home today as well. We're going to go say hello at school if this downpour stops. She's sick, but she has stretches where she's doing well. And it's her birthday, so we can't just hang out. I suggested a bowl of ice cream with a candle for tonight, since we had a big cake on Sunday. Remember, Maggie doesn't eat cake or ice cream. Actually I don't really eat cake either. But Steve does. And he thought that was a dumb idea. So we'll make another cake today. That will be fun for Maggie anyway.

My girl is fifteen. Amazing. Though remembering the day she was born is difficult, every day since has been a miracle. I never in a million years thought she'd be here on her 15th birthday. She's here and thriving. (Present illness notwthstanding).

One Eyed Jump Shot

It has been an interesting weekend. Maggie’s birthday party was yesterday. It is the first time in years that we actually had a party. Birthdays can be tough and the celebratory feel just is not always there.

This year, Maggie discovered music and made some good friends at school. That made it easier. We had a dance party. I sought input on the music from the girls, from my niece Nina, downloaded it, and had it playing the whole time. For the Piece de resistance, Maggie received a disco ball as an early birthday present from my friend Linny. Dad rigged it up with a motor and lights.

There wasn’t a lot of dancing, but with four wheelchairs in the house, there wasn’t a lot of room anyway. With the teachers and attendants et al, there were over 20 people. It was crowded and fun.

Maggie had fun; but she would have enjoyed it more if she felt better. Friday evening she had an “episode”. She turned blue and was really having trouble breathing. It was about 6PM, just as the doctor’s are gone for the weekend. Perfect. We know what to do; we gave her oxygen, changed the trach, and got her back and stable. It took several minutes, though and the trach change did not really help. This was a different problem. I considered the ER, but Friday night in the ER is craziness. We watched her closely and though she needed more oxygen than usual, she was doing all right. When she still needed oxygen in the morning, I knew we had to go. I presumed she had pneumonia. The docs decided the same thing, even thought her x-ray was clear. She started the med, had a good day and Saturday we were a “go” for the party. Saturday night was a little dicey, but that’s par for the course.

Sunday morning as I was leaving to pick up the cake, the doctor called from the ER to tell me that Maggie has RSV, respiratory syncytial virus. For normal healthy people at is a bad cold, for babies, or children with trachs (like Maggie) it can be much worse. In addition, it is highly contagious. Arrgh. I called as many people as I could. One decided not to come and one decided not to bring her little kids. Other than that, everybody came to the party. It is pretty easy to stay away from Maggie because the wheelchair is a natural barrier. I hope that the guests left only with their treats and not with any bugs.

The capper was about an hour before the party when Maggie started reacting to something. Her left eye just swelled up and closed. We gave her Benadryl right away, but she has looked like this for the past 24 hours.

Could be the prescription, could be just the illness itself. Nevertheless, she went through her party as Popeye. Today we are waiting to hear from the doctor. She is not going to school this morning, but I am going to take her over to Special Olympics. She has been practicing so hard for this.

Of course, it’s basketball, so I am not sure how accurate her shot will be with one eye closed.