Home Again

Hello all. thanks for all the well wishes and good thoughts. Maggie is home and safe. They saw what they needed to see and sent us home. Next steps involve determining what if anything we will be done about it.

Just so you know maggie is fine, check out this picture taken in the recovery room . MAggie looks a little wan yet, but she and her nurse were both wearing nearly the exact same shirt.

Friday Light

We are off to UCSF for a day of anesthesia and tubes. As I said, Maggie is missing the Halloween party at school  Despite that, though, Maggie still manages to have fun. She's been trying on various get ups this week.

Happy Friday. Happy Halloween! Go Giants!

Please, Proceed.

Maggie has a “procedure” tomorrow. Procedure is the hospital word for pretty much everything from taking blood pressure to a heart transplant. This is falling somewhere in the middle of that realm – but what doesn’t?

I used to keep careful count of Maggie’s surgeries. I know the number exceeds 75 at this point, but I do not know the exact number. For one thing, it really does not matter; it’s a lot, no matter what the number. In addition, with the advances in medical techniques, many of these things are not “surgeries” in the manner they were when Maggie was little, so it is difficult to know what to count as surgeries any more.

Tomorrow she will be under anesthesia in the operating room with pediatric surgeons and a pediatric gastroenterologist in there. I guess that counts as a surgery, but maybe not. Happily, they will be using tubes and cameras instead of scalpels and clamps, which is a good thing.  They are looking at her trachea and her esophagus to pin down more specific information about recurring problems.  What we will be able to do with the information they may or may not get is a separate question entirely. That is a bridge to cross on another day; we take things one-step at a time.

Maggie has had this “procedure” several times.  Generally, she comes home afterward, but it all depends on how she handles everything. She could be admitted to the hospital, but I certainly hope not. We have almost all the capability of the hospital at home, but if she is too precarious “almost” is not good enough.

From a parent’s perspective, this is an area where experience does not matter.  Though I am very familiar with this procedure and confident in the doctors I promise you I will be a basket case while I am waiting.  Knowing the routine and knowing what to expect are certainly helpful, but when they take her into the OR from Pre-op and I am standing alone in the hall with her empty wheelchair, my stomach is on the floor.

While she is in the OR I will likely wait in “surgical waiting area” for news. Anyone in surgery – who is not already an inpatient of the hospital with an assigned room – comes in through the surgical waiting room.  In addition to families waiting for news of their loved one’s progress, there are patients waiting to be called into surgery.  It may be the most stress-filled room in America. Some patients are alone or have one person with them. Others have entire families waiting for information. Children are bored and crying. People are exhausted and worried. Doctors come in and out talking to families. Privacy? Hard to come by. Often Doctors take families out into the hallway to talk to them, but sometimes not. I sit there with my crossword puzzle or something to keep me occupied and try not to listen.  You cannot really just plug in the IPOD, because you do not want to miss when they call your name.

Because it is pediatrics, parents get to go into the recovery room. (Families of adult patients have to wait until recovery is complete.  Steve and I hang out with Maggie while she comes out of anesthesia.  That is always when I feel the stress of the day start to melt away. The tubes and machines do not concern me.  That is something you can get used to and when you know what they all do, they are not scary at all.  I generally scan all the monitors to see how she is doing. I might not interpret it all correctly from a medical standpoint, but I know what they mean for Maggie and they help me from a DR. MOM standpoint.

Recovery time is generally a couple of hours. If everything starts on time, Maggie will be gone about the length of the school day. While her classmates spend their school day enjoying a Halloween party, Maggie will be undergoing her “procedure.”  Unfair.

I will be dressed as the unusually quiet, overwrought mother in surgical waiting studiously NOT listening to the stress of other families.  Believe me when I tell you, that is plenty scary. 

I'll check back in after the "procedure" because that's my "procedure."  

Channeling Aretha

 Anyone who has been reading my posts for a while knows the incredible amount of work taking care of Maggie involves. Maggie’s physical needs require specialized care 24/7; but managing everything to meet her physical needs is another 24/7 job. I do both jobs and then try to deal with the rest of my life. Not everyone can do what I do.

Admittedly, I have help with the first full time gig. The nurses work feverishly while they are here. Often they need my assistance, but without them, we could not keep Maggie at home. Even with that help, though, my plate is extremely full and my freedom is extremely limited. My life is not easy, but it is very rewarding. Am I looking for kudos? No. Am I complaining? No. I am simply stating the obvious. 

Though there are thousands of parents similarly situated, society really does not have a convenient slot for us. We are in between slots. Though the focus of our life is caregiving for our children, we do not really fall into the “stay at home mom” category. But we don't work outside the home so we are not professionals either. We are knowledgeable unlicensed medical providers and social workers. 

We are often exhausted and stressed. This is the one category that people apply. Always. Any justifiable complaint or concern we raise is immediately attributed to the stress we are under. Yes, we are under stress, but sometimes - just sometimes – there might be something more. Having someone decide that the stress of my “situation” is the only driving factor in my life disrespects me as a person as well as the hard work I do every day. That disrespect is difficult (or impossible) to tolerate.

One thing I do expect in my life is respect. Respect the work involved and for the effort expended to lead a “normal” life, despite the limitations. Respect the fact that I do not have the same freedom as other people. Respect the fact that even though we make it look easy it is not. Respect our positive outlook. Though the water in the glass is tilted a bit because my life is wildly out of balance, that glass is more than half full. Respect the fact that just maybe you just do not know everything that goes on in our house and our lives and your suggestions and comments are not appropriate. Most of all respect Maggie for the incredible person that she is.

Generally, we are respected, Maggie and all of us. Sometimes, though, all of that effort is for naught. Well meaning but ill-advised acquaintances extend pity or platitudes, make unwelcome comments, give inappropriate advice or take advantage. I get that they mean well and I get that they do not know better, but it is tiresome. After all this time, some should know better and not making the effort to understand is itself disrespectful.

Ghandi said, “be the change you want to see in the world.” That means if I want respect, I have to be respectful. All I can do is try my best to maintain respect for those who do not show respect for me. Honestly, that becomes more and more difficult with the passage of time. This may come as a shock to some of you, but there is a slight possibility that Ghandi was a tad better person than I am.


If I can’t be Ghandi, I’m going to have to identify with another icon. Sing it Aretha http://www.youtube.com/watch?v=6FOUqQt3Kg0&feature=player_embedded

I'll take the blahs, thank you.

This getting up and ready in the middle of the night is for the birds. (Owls, I guess). It is so dark in the morning that I feel out of sync all day.

Once I get Maggie all prepped and ready to go in the morning, we roll the chair out onto the deck and get in the elevator in the dark of night. I have to grope for the light in the basement to find my way to the front of the house and it is still dark when we're outside waiting for the bus. It gets light pretty quickly once we're out there. The whole process will definitely be easier after the time changes. (Of course then I'll be complaining that it's dark too early in the evening.)

The dark mornings make it hard for me to start my day and the mid afternoon blahs are quite present. Yesterday was no exception. The afternoon nurse arrived just ahead of the scheduled time for the bus. I was working and trying to stay awake. That's when the phone rang. I saw it was the school nurse and thought, oh, the bus is going to be late, maybe I can sneak in a 15 minute nap. I was half right. The bus was going to be late, all right, but I was snapped out of the blahs by the rest of her news. The bus was in an accident.

WHAT!?!?! She assured me that everyone was fine and that the accident was minor. They were only a block away from the school. The bus was stopped at a light and was rear ended by the vehicle behind them. There was a very loud crash that scared all the kids (and the adults) on board, but there was no damage to the bus and no injuries. The car behind them didn't fare as well there was front end damage to his car.

Suddenly I went from "I need a cup of coffee to stay awake" to "I need a cup of tea to calm down." My initial plan was to head down there and get Maggie home as quickly as possible. But there are protocols and procedures to follow. They wouldn't let anyone off the bus until the supervisor arrived and the reports were done.  I understand that completely, but it was difficult to just sit here and wait. I didn't think I could add anything positive to the scene and would only complicate things by bringing my van to the congested area. So I waited. Maggie arrived 45 minutes later not any worse for the wear.

I asked her about it and she gave me a sad face, so it clearly scared her, but she's fine. It scared me too. I know how precarious Maggie's well being is, but I feel like she should be immune from the regular dangers and perils of life.

If you are suffering from the mid afternoon blahs, enjoy them. They definitely beat the alternative.

Pennant!

The Giants just won the pennant. There was a lot of shouting and carrying on here. Maggie was laughing her head off at ever cuss word coming out of the front room; and she had plenty to laugh about. (I'm going to blame my son Eddie to protect my reputation.)

Ever since the last few days of the regular season, I have been posting this picture of Maggie at a Giants game this summer decked out in her Giants' gear on facebook.

For the past few games a few folks have been requesting it. (baseball fans are very superstitious)  Maggie is now a lucky charm.

Today I posted this one of Maggie and her brothers at a Giants game in 1997 (or 98). This will likely be posted throughout the word series. Not sure how happy her brothers will be to see that - especially Tim in his eye black and missing teeth.

Hopefully the Giants will keep winning and Maggie won't learn any more words from the front room. 

Buzz Kill

It's one week until Halloween.  That's hard to believe. Halloween has been Maggie's day to strut her stuff for many years. Her costumes are show stoppers.

This year Halloween is on a Sunday. The school Halloween party is on the Friday the 29th. Sadly Maggie has a procedure scheduled for Friday. She will be under anesthesia and cannot take part in the Halloween festivities. We are bummed

Here are some costumes from past years to show you how much we get into it. These are 2004 - 2008. I can't find last year's pirate ship. The devil is called "hell on wheels" and my personal favorite is the chef. The "stove" is cardboard.  Credit my husband with these fabulous creations. 

Maggie will be fine by Halloween day but there's no place for her to go. The social part of Halloween  for her is school. And she's going to miss it. Bummer. 

She can dress as a healthy recovering girl, I guess. Seems like she was that a lot. 

(Looking at his) Watch dog

As soon as I get up in the morning, I begin my ritual of getting Maggie out the door to meet the bus. This morning was no exception. I talked with the nurse about how the night went as I unplugged the charging Dynavox and suction Machine and loaded them onto the chair. I filled the portable oxygen tank and put that on the chair as well.  The chair tipped from the weight because Maggie was not in it yet. I rearranged things to make it safer.

Maggie was already to go. Her jacket was on but she was still in bed. The nurse cannot lift her so I do it. I get everything else ready before I put Maggie in the chair. Not sure why, it is just my routine.

I was more efficient than usual because I had 10 minutes to spare.  Nice. I sat down at the computer. Mistake.  In the blink of an eye, it was late.

Janice, the school nurse was already parked in the driveway. I told the night nurse, who was leaving, to tell Janice we were coming. I quickly grabbed Maggie and fastened all seven buckles to secure her in the wheelchair, tied a scarf around her neck, ran a brush through her hair attached the tray and pole and headed toward the elevator.

It is a very slow ride down. No one can see us because the elevator is in the back of the house (it goes from the back deck to the backyard); but I was not worried, I knew they would not leave without us because Janice knew we were en route.

I knew that. Brisco did not. Our 12-year-old dog does not like any deviation from the routine. This was unacceptable. He was pacing back and forth at the top of the elevator whimpering and then ran down the stairs and stared at us through the glass doors of the elevator until we made it to the bottom. I knew from his actions that the bus must be outside.

Generally I get down to the basement/garage bring Maggie through. Open the garage door, fill up the dogs bowl and bring her outside.  Today I rushed through the garage, hit the button to open the door and pushed her outside to the waiting bus. Brisco stood next to his bowl apoplectic. He was barking up a storm as if to say Wait! Wait! Wait! You forgot a step. I said Brisk – you just have to wait a MINUTE. 

Janice did her check to make sure she had all the necessary equipment and that it was all working properly. Brisco kept barking. Maggie’s hood pulled back a little and I realized I never brushed the back of her head. Oops. Janice will take care of that at school.  Brisco kept barking.  The driver loaded her onto the bus with Brisco barking the entire time.

I am certain my neighbors who don’t work 9-5 were extremely appreciative of the commotion and the barking dog at 7:15. The bus left. I went in an immediately fed the dog. He looked at the food, but he was not really interested in eating. He just needs me to stick to the routine. 

Great. That's what I need. Someone else to answer to.  

Meet the Quarterback

I participated in a panel presentation yesterday at UCSF Benihoff Children’s Hospital. There were four parents on the panel. Each has a child who is/was a patient at the hospital. All four of us are members of the Family Advisory Counsel for the hospital and making these presentations is part of our “Parents as Educators” program. The audience was hospital staff, including all level of doctors, from resident to the medical director, nurses, therapists, child life specialists, social workers and other staff.  The audience seemed interested and engaged as each of us answered questions and gave them the view from the “other side”

The presentation was called “Meet the Quarterback” referring to parents as the play callers in the child’s care.  The name came from something I said at a meeting some time ago. The discussion involved making sure staff was welcoming parents or caregivers as part of the medical “team.”  I said, “They want to make me part of the team but what they don’t understand is that I’m the head coach.”   They loved that crack because it was obviously coming from a completely different perspective. "Head coach" became "quarterback" to avoid offending any doctors who are under the (mistaken) impression that they are the head coach.

Medical personnel change all the time, especially at a large teaching hospital like UCSF. If your child has a chronic issue, you better be prepared to provide necessary information to new practitioners. If your information is not accurate or up to date, your child may have to endure unnecessary or repeated procedures. It helps everyone, especially the child, if the parent is part of the team.

Not every parent is the quarterback (or head coach) or wants to be. They happily cede all decision making to the doctors. I would venture to guess, however, that is not often the case when a child has chronic problems.  Though many parents may not speak English or have cultural differences that preclude them from taking part, they are still parents and they know their child better than anyone else does.

We tried to impress upon the audience the pressures of having a sick child and especially the sick child they see in the hospital is not the whole person. Maggie’s disabilities and conditions are part of her but they do not define her. It is just one part and the doctors (et al) bring their expertise to that one part. The parents have to balance the illness with the rest of the child’s life and that of the rest of the family, including other children.

The panel addressed how they have been empowered as parents to assume the quarterback role. The answers were as varied as our children and their conditions, but each of us could point to a time where someone said, simply, you are the mom, you know best. I told them the moment that happened for me when Maggie was a very small baby.  

I have not shut up since. 

Snake Charmer

October is turning into a long frustrating month. It is the one month we are on COBRA for health insurance. COBRA is the law allowing one to continue on a group health insurance plan for a period of (up to) 18 months after leaving your place of employment. Steve joined a new firm in September and there is a short waiting period before the health insurance for the new firm kicks in on November 1. The old plan expired September 30, so we are only talking about one month having to use COBRA.  I would not recommend that any family go without health insurance if it is avoidable, and with a child like Maggie, continuous coverage is absolutely essential. COBRA is not cheap, but it covers the one-month gap in coverage for us.  

Except there is a problem. Today is the 18^th of the month and it does not seem to be kicking in. We paid the premium immediately and heard nothing. I called several times last week and was advised that I could get an ID # on Friday the 15^th, but I wouldn’t have actual cards for another week. I waited as long as possible to renew Maggie’s 14 different medications, but I cannot wait any longer. I have seven of them waiting to be picked up at Walgreens. 

On Friday I stayed on the phone for 45 minutes and finally got the ID# but the insurance still wouldn’t work because “the computers are down: (Really?) The pharmacy tech at Walgreens was on the phone with them for 45 minutes in the morning and told me to come back in the afternoon. I came back around four and she was on the phone with them again. They told her it would be another 24 – 48 hours. I am not even sure if the weekend counts. I could not get the medications.  My choices were to either pay hundreds of dollars out of pocket or wait for the insurance – hopefully today.  I already paid $1000 for the premium; I do not think I should have to pay another $1000 for the meds that are covered. We are waiting. I generally renew the prescriptions before they are completely gone, so I have until today. I did not make it with one of the drugs; we were completely out by Friday. Walgreens’ was nice enough to front me enough pills to get her to Monday evening.

If this is not settled today…....heads will roll. (Shout out to my 4^th grade teacher Sr. Carolyn who taught me that line, even as she scared me half to death.)

I need this coverage for one month and it will take all of that time to get it up and running. What, pray tell, is the point? If it is supposed to fill the gap, perhaps it should be available when the gap is present. This insurance, like most, works best only if you do not actually need it.  

I was wondering how it is that this insurance is called “COBRA.”  I know it is an acronym for the Consolidated Omnibus Budget Reconciliation Act, but what in the world do all those names have to do with health insurance?  Given the amount of time and effort it is taking to make it work, I am guessing the name was a warning. It is a cobra, and it may eventually do what you want, but you have to be a talented snake charmer to make it work.  

I'm tuning up now.

Scattering the puzzle pieces

This is Eddie getting air during a race earlier this year. I believe it was taken by a professional or someone with a very good camera because capturing these guys is very hard on a point and shoot. 

Eddie is competing in the collegiate national mountain bike races this weekend. This is his fourth straight nationals and the last one because he is graduating in December and will no longer be in the “collegiate” category.  Like last year, the race is taking place at the Northstar Resort near Lake Tahoe.  We had plans to go, and rented the same condominium as last year. I had mixed feelings because it is so scary to watch these races, but it is my last chance and we had a blast last year. However, it is not to be; Steve is going without me and I am bummed out.

In order for the two of us to go away together over night, about 100 things have to fall into place for Maggie. It is like putting a jigsaw puzzle together. I started down my list ticking things off one by one. I have to arrange for extra nursing to cover the extra 8 hours a day that I generally do. This comes out of my pocket, but it is worth it occasionally. I also had to have some backup in place. My mom and sister agreed to pop in and visit with Maggie because she gets very confused and a bit mad when I am gone for too long. Last year when we did this Tim was home for the weekend and that’s how it was even possible at all.

I needed only one more piece of the puzzle to fall into place. If I could get Margie to take her old Saturday night shift then Lucy could fill in on Saturday and Sunday afternoons.  Denied. Not only was Margie not available on Saturday night, she could not work her regular Friday night shift either because she was going out of town with her family. That was a deal breaker, because Lucy would have been the backup. Now Lucy will work both Friday and Saturday night, but I do not have anyone to fill the extra shifts – so they are on me.

Getting a nurse to cover on the weekend is hard enough, but if I am not here, it has to be someone who is totally comfortable on his or her own. It cannot be someone new who is unfamiliar with all Maggie has needs and supplies. If I am not here to help and guide, a new person could not do it alone – and I would not be comfortable leaving.

Yes, Steve could stay and I could go, but he has more fun watching these scary races than I do.  They come tearing straight down the mountain at breakneck speeds jumping over rocks and trees on the way. I stand on the hillside with my eyes closed.  It is terrible when I constantly repeat to Eddie that one kid in a wheelchair is enough for me. He was hurt in a collision in last week’s double slalom event and considered pulling out of nationals because he is still recovering. But it’s nationals and it’s the last time; he registered and plans to give it a go this weekend.

Therefore, I wish Eddie well from the relative safety of home. I hope the race goes smoothly, that he does well, keeps all his teeth in his mouth and his bones attached to one another.  Maggie and I will await word from our scout on the front lines. 

I said in the last post that Maggie was likely recovered from her weekend and her strange sleep pattern caused by the heat. However, after I received this picture from the teacher showing Maggie sound asleep while she "works" at the computer, I'm thinking maybe not.

The fog is supposed to roll in tomorrow, so she will be right as rain by the weekend.

Hot-tober

It is hot here. I believe the temperature hit 90 in San Francisco yesterday and it will be about 85 today. Whew! As you might imagine, Maggie and the high temperatures are not compatible. She wilts like a flower and we need to keep the fluids moving for her. She was tired before the day started and the heat really did not help.

Maggie may have had too much weekend. The weather was nice over the weekend. Not hot by normal standards, but a little warm for Maggie. We went to the Columbus Day Parade in North Beach parade on Sunday and  Maggie posed with some of the Knights of Columbus in full regalia.

We also stopped in at the Bazaar at Sts. Peter and Paul. Maggie posed We had to visit the miniature golf course that Steve and Rob made when the boys were in school there 7 or 8 years ago.We were delighted to see that there was a sign calling it the McDonald/Pinotti golf course.  It is a classic, all the "holes" are San Francisco landmarks. You can see the Golden Gate Bridge, Coit Tower and a Cable Car in this picture if you look closely. It remains a huge hit with the little kids.

I tried to keep Maggie in the shade while we were there, but the bazaar is in the open school yeard and there is not shade to be found. We didn't stay too long down there because Maggie just doesn't have the stamina and the excitement of the bazaar, and the parade and all the people along with the warm weather is just too much.. Besides, we had guests and were planning a big dinner. She and I came home after about 90 minutes and busied ourselves here.

Monday was a holiday from school and Maggie slept for four hours in the afternoon, which is very unusual for her, but given all the excitement of the weekend, not terribly surprising. Of course all that sleep during the day meant very little at night. She awoke at 2:30AM for the day. Great. With the lack of sleep and the heat she spent most of yesterday in a haze. She took a shorter nap yesterday and slept well last night, so hopefully we are back on track.  

This morning Maggie was in a good mood waiting for the bus with me and Etoy, her night nurse. This picture is from a couple of weeks ago, but here we are waiting for the bus on another beautiful October morning. It's funny, in the past few weeks it is a LOT darker in the morning. It may be 90 degrees, but it's mid October.

Stay cool out there!

A charming and delightful child

The other day Maggie joined me outside as I was trimming some overgrown shrubs in front of the house. We chatted for a few minutes with a woman who was parked in front of our house. She was there for several minutes because she decided to sneak a cigarette in her car. (I don't ask) She was listening to Maggie and I "converse," me on the ground cutting back overgrown shrubs and Maggie in her chair behind me using the dynavox. Maggie kept saying "Mom" and I would say "what?" this went on for about 5 minutes before I realized the cord was loose on the machine and she couldn't advance it. I fixed that and she said "Mom is working." The woman was fascinated by the machine and asked how it worked. I explained and said Maggie why don't you say something to this nice lady. 

Silence. ...  Don't you love teenagers? 

I said, "come on Maggie she wants to know how it works." Maggie just looked at me and signed "no." I didn't bother telling the lady what she was saying. I just looked at Maggie and raised my eyebrows in the universal "mom" way. I swear Maggie rolled her eyes a little bit.  Maggie started hitting buttons and smirking. I wondered what was coming. She hit the button and I hear:

"Hello my name is Maggie, You are charming and delightful." 

The woman was wowed. I just smiled, and Maggie was grinning ear to ear. I didn't bother to tell the woman that Maggie was being a smart ass.

Maggie has several different ways of using her dynavox. Sometimes she will make a specific sentence, choosing each work individually, and sometime she will use some of the complete sayings that are on the talker for her. These sayings did not come with the machine, rather each was programmed in by various teachers or by me to reflect something she was interested in at the time. "You are charming and delightful" is one of those pre-programmed sayings. lt was the brain child of teacher Joe a couple of years ago. He wanted Maggie to say something nice about folks and she used it all the time. Maggie got away from using the pre-programmed sayings  as her ability to make her own sentences improved, but she does occasionally use one and she always uses them appropriately. Now apparently she also can use them sarcastically.

I guess that's progress.

Friday!

My mother and I attended a funeral on Friday morning for Larry, a man who was a great friend of my dad's and really of the entire family. There were a lot of people there to honor him and his family did a wonderful job.

As they so often are, this funeral was a bit of old home week It is probably terrible to come home from a funeral feeling so good, but I do.  It is one of the perks of remaining local to the area in which I grew up My high school principal was there as were many other familiar faces. When we entered, Maggie's' former Physical therapist, who is a relation of Larry's by marriage, came up to me and asked how I managed to stand in high heels.I laughed.  No one in Maggie's world ever sees me in heels. I assured her I would be mostly sitting and I would soak my feet the moment i got home. When she left, my mom greeted the lady in front of us. Before I could even register that it was Joan  another family friend, she said, "Sally! I want you to know I check you blog every day and when there's nothing new I think Now what is she up to?"  I had to laugh again, but I was very flattered.

 This is a shout out to Joan P and all the other people who are following Maggie's story. I really have no idea who checks in but I appreciate everyone. Also, just so you know Joan, I will be very busy this weekend and posts may have to wait a couple of days.Don't worry, we're fine! Look at it this way, I'm probably out there in the middle of the stories I will tell next week.

 Have a great weekend. It will be a wild one in San Francisco. The Giants will hopefully win Game 2 tonight (maggie's wearing her Orange) and there will be lots of things going on around town.  The Blue Angels are screaming over head as I type this. Maggie and I were on the deck watching them but it got a little too loud for her.

that's four jets flying over the neighborhood. Taken from the back deck

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Say Cheese

Maggie's school picture arrived yesterday. It's "ok" not great. Capturing Maggie in a bright moment without her face in a grimace can be difficult. This is exacerbated by her trepidation in front of all the equipment and the stranger telling her to smile. Despite this, there have been some excellent ones over the years, but there have also been some very bad ones. One was so bad that I let the company have it for even printing it. Why would any parent accept that? They refunded my money. Last year's picture was very good indeed, but I forgot to sent the money in so we never got any photos, just the student body card.  Between her facial movements and my forgetfulness, getting a good school picture of her is s a crapshoot.

Everybody has good ones and bad school photos.  My son Eddie used to take some doozies, but he had good ones too. I don't remember any terrible ones of Tim. My own history was spotty though. In a couple of years early in grammar school I decided to set my own hair. Wow! Those are some wild shots.

With pictures everywhere now, the annual school picture has lost a bit of its importance. Still, this will be your face in the class picture for all your classmates to see and pull out of dusty boxes 20 years from now. You just want to look good.

This picture of Maggie isn't perfect, but it definitely catches her wild side a little bit. I guess it's a keeper

Welcome to the Club?

I don’t want to belong to a club that would have someone like me as a member

                                                                                    --Groucho Marx

As a parent of a disabled child, I am a member of a group on one wants to join. The club is not exclusive by any means. It absolutely does not discriminate based on race, religion, sex, age, sexual orientation, socio-economic status or any other classification that I failed to mention. Disabled children are born into every conceivable type of family, in big cities, small towns and every other part of the world.  Where in the world you happen live often dictates the child’s survival and quality of life, but the disability happens everywhere.

I remember when Maggie was just venturing out into the world. She was about four months old and spent the first three months in the ICU. We went to pick up Eddie from his end of kindergarten picnic. The mother of one of his classmates came over to admire the baby. Everyone in the school knew about Maggie and her saga. The woman, an immigrant from China, looked at Maggie and said in broken English, “You are lucky she was born here.” I knew immediately that she was right. In many places, systems are not set up to handle the Maggie’s of the world.  Doctors may lack the skills or the support to save the child. In many other countries and in many parts of the USA, Maggie might not have had a chance at life.  She got that chance here and I do feel lucky in that regard.

In reality, though things are better here than in many parts of the world, the US as a society, is not really set up for the Maggie’s of the world either. People think they are, which almost makes it worse.  The infrastructure needed to provide care for her and her peers does not really exist. Rather, there is a series of disconnected, overlapping services that does not have a central intelligence or hierarchy. It is a competition between various departments of the government to avoid providing service. Each points to another department to provide what a family needs. It is the family that has to find its way through a morass of governmental, non-profit and private services. It is the family that has to track everything down and make it all work for their child.

Emotionally overwrought? Buck up.  Need money? Get a job. Can’t work because you have to navigate for your child?  Welcome to Catch 22.

No wonder no one wants to join our club.

When I hear of a family having to join our club, I feel bad. That does not mean I hate my life, I am used to it; but I know how hard it is for the parents to deal with everything.  It seems lately new members are arriving every day. Hopefully some will have only a short stay and their child’s issues will resolve. That happens to a few lucky ones. Some are lifetime members. This club changes you. Once you are a member, even if only for a short time, you see things differently. You learn quickly to appreciate whatever gifts your child and everyone else’s child brings to the table.  

Current club members embrace and assist new members in any way we can, but we’re really not in the market for new members. Nonetheless, they keep coming. 

Tubular!

Maggie’s room is not designed to be a bedroom. It was the breakfast room of this house originally. It is on the main level of the house and has been reconfigured to meet her needs as best we can (there’s still no closet). Her room opens right on to the deck, which we added along with the outdoor lift/elevator. We also reconfigured the bathroom to add the shower. It is getting more and more difficult to get Maggie into the shower these days (more bed bath than showers lately). That shower comes in quite handy, though. We use it to dry various tubes we need for Maggie’s care. The shower resembles a pasta rack, with tubes hanging everywhere. 

There are hundreds of tubes in Maggie’s room all the time. We have oxygen, nebulizer, humidification, and suction tubing. We have three types of feeding tubes, catheters of various types and or course the trach tubes themselves. There are also the things attached to the tubes on both ends, the canisters or the various tips.  They are all essential to Maggie because they provide a means to give her what she needs (food and meds) and take away what she does not.   

 Every single tube as well as the machines to which they are attached are breeding grounds for bacteria. Some of the tubes are so bacteria filled they simply have to be thrown away every day or after a single use.  Most, however are re-used for a month or more. That means they have to be cleaned very well ever day or Maggie will get very sick.  If you look in Maggie’s bathroom you will see some tubes soaking and other hanging to dry form the showerhead and any other handy spot.   

Getting the tubes really clean and bacteria free takes more than soap and water. Soap and hot water is just step one.  After the tubes are washed, many of them, especially anything used for respiratory issues, have to be soaked in a vinegar solution.  Vinegar is a natural bacteria fighter.  We use  one part vinegar to three parts water and we change the solution frequently. That means we go through a LOT of vinegar.

Every couple of weeks I head to a nearby store that sells large quantities. Not a warehouse store per se because that place seems to sell only gourmet vinegar. There’s nothing gourmet about what we are doing and no need for the extra ingredients (or extra price). Just the plain white vinegar for me, thanks. I buy two or three gallons at a time.   I don’t really need anything else at this store so it’s generally the only thing in my basket.  Often I get strange looks from people as I put my three gallons of vinegar on the conveyor belt. Once in a while someone asks why I’m buying so much vinegar and I tell them, but generally I just get quizzical looks.  The looks are not unkind or inappropriate,  just quizzical

The other day I was loading gallons of vinegar into my cart when I saw that look from another shopper. Our eyes met briefly and I think she was just about to ask. She was placing a large package of spaghetti into her cart. Unbeknownst to her, the package was opened and as she was looking at me dried spaghetti noodles were going all over the floor. Now my eyebrows went up. She looked down at the now empty package in her hand and the mess on the floor and gave the greatest me the greatest look ever. It was resigned, exasperated and amused all at the same time. I very dryly said, “I wouldn’t buy that one if I were you.”  We both laughed. I moved my basket heavy from all vinegar and the spaghetti noodles crunched under the cart. We both started laughing at the sound.

I proceeded to the checkout still laughing and mentioned to the checker that there was a problem in the spaghetti aisle. He nodded and said, what’s with all the vinegar?

Can you handle THIS?

 What a weekend. We had Eddie visiting for one night, we were invaded by a raccoon, we watched the Giants clinch the West, and we celebrated Steve’s birthday.  None of those things was the highlight for Maggie, though. Rather, a little home improvement project caught her fancy.  

After 20 years of plain wood in the kitchen, Steve put drawer pulls and handles on the kitchen drawers and cabinets. My friend Grace said it’s like putting on the perfect necklace with a dress. It just completes the look. In our case, there is an additional bonus. A certain teenager in this house thinks these handles are GREAT! The drawer pulls are at exactly the right height for the wheelchair.

Maggie could not get enough of these wondrous things yesterday morning when we were making Steve’s birthday cake. She got a hold of the drawers and had a great time opening and closing the drawers. She was tossing dishtowels around the kitchen with great abandon. Late in the afternoon her nurse brought me a key she found in Maggie’s chair. Oops. I tried to keep her out of that drawer but I was obviously unsuccessful.  

Maggie was enjoying herself tremendously when her brother Eddie came up behind her, leaned over and said in his deepest possible voice “Maggie, what do you think you are doing.”  She found that delightful.

Having her brother here, even if only for a couple of hours, was almost as good as having the new drawer pulls. Maggie comes to life even more when either of the boys come home. She will have to wait until Christmas to see Eddie again. We will have to work on getting Tim to come home and give her a brother fix. Forget raccoons and baseball and birthdays. She can show him the new handles.  

Happy Birthday Dad!

Maggie made Steve a birthday card for his birthday today. She made it at school on Friday. The teacher told her to "write" what she wanted to say to her dad. She simply used her talker and everything that went into the speaking panel  was  transferred to the computer. I didn't even know that was possible, but I freely admit I know only about 25% of that machine's capabilities. (that includes things I KNOW about but cannot make work)
Maggie "wrote" for several minutes. When she was done the teacher printed the message and put in inside the card. I laughed my head off when I saw this

.Remember it's phonetic. I starts out "why I ought a..." You can see how she starts losing interest in dad toward the bottom and talks about her friends Juan, and Cui Peng,  her nurse and her teacher.

Steve loves it, of course. 

Don't mess with the Dog's routine

I got up this morning to start Maggie's morning routine and knew I couldn't do it. I was sick in the middle of the night and didn't sleep at all.  I called for Steve to take her downstairs after I got her ready. I went back to bed when he came down.  As I lay in my bed I could hear Steve and Maggie and the school nurse outside waiting for the bus. Soon they were all laughing hysterically. I was too wiped out to get up and see what was so funny.

Once the bus left Steve came in a brought me a cup of tea, sweet guy that he is, and I asked what was so funny. It seems Brisco (the wonder dog) was quite worried about the change in personnel.  Nurse Janice noticed  he kept looking at the front door apparently wondering where I was. She pointed it out to Steve and Maggie. Brisco came up the front stairs and poked his head in the door as if to say, "uhhh, Sally where are you?" The bus pulled up and they were loading Maggie and he kept watching Maggie and whipping his head around to the front door in disbelief that I wasn't there. 

It's nice to know my dog worries about me. He came in and saw I was in bed and curled up on his pillow at the foot of my bed. Alls'right in his world, now.


Later in the morning Maggie's school called because of some concerns with Maggie's breathing, but she's fine. The nurse put the phone down to Maggie and he used her dynavox to say, "Mom are you ok?" which was very sweet. 
I still don't want to eat anything, but I'm sure the worst of this is over. Thankfully, the seventeen bikeriders opted to camp closer to the race than stay here so I don't have to play house mother. Eddie is still staying here and it will be good to see him.



I'm tottering off to make another cup of tea.