15 items or less

Grocery shopping with Maggie is always entertaining. I push the wheelchair and pull the shopping cart behind me. We are quite the little train and people just get out of our way. Generally they are suppressing a smile because Maggie is cracking up. Here's a shot of our "Little Engine that Could." I stand between Maggie and the grocery basket.  Cornering is not pretty.

It is not the most efficient way to get the grocery shopping done; hence I only bring Maggie occasionally. This week, though we went together twice and both times had very strange experiences in the parking lot.

As we were walking in the other day I pushed Maggie toward the wheelchair cutout. This cutout is in the middle of a slight ramp that extends in either direction. The left takes you to the store, the right gets you to the bike rack, water machine etc. I was just entering the ramp. A shopper was coming down with his groceries and backed up to let us by. Just then an employee of the store started down the ramp from the right. He was pushing extra shopping carts and he was BOUND AND DETERMINED to make sure he beat me to the ramp, even though  we were already there and he was about 10 feet away. He actually started speeding up so he could to cut us off. It wasn't even close - he was like a crazed driver on the freeway. I just said , "Hey, You pretty much have to let us go first. One, we are the customers and two it's really bad karma." He slowed down to avoid rear ending us. The other customer caught my eye started laughing and said "Is HE kidding?' I smiled, shrugged and kept going. Bizarre.

Stranger still was the next visit. I was loading Maggie back into the van. The wheelchair loading area is also a pass through for customers returning to their cars. There are other ways to get to the cars, but this is the first one and most people use it. That makes perfect sense to me. Why not use the space for more than one thing. I'll bet Maggie is one of the very few wheelchair users who frequent this particular store. It will only very occasionally be used for both and even then the non wheelchair users have another path back to the parking lot.

Win win, right?  Of course not.

As I loaded Maggie in I heard a woman with a strong Russian accent say

"You are blocking" (which sounded more like "blooking")
I just (fake) smiled sweetly and said what was patently obvious to everyone, "Yes I am, but I'm loading a wheelchair."  
She said, "This space is for people to get back to cars."
I smiled again, pushed Maggie up the ramp and said sarcastically, "Right it's for both loading wheelchairs and for getting back to cars. I guess when they designed it they figured people might be considerate of the occasional wheelchair." 

My sarcasm was completely lost on her, but the man behind her guffawed at my crack. By that time Maggie was in and I pushed the button for the ramp to close, I had to stand there to make sure Maggie didn't get her hand stuck. I "blooked" her for no more than 45 seconds.

The two incidents, which happened about 48 hours apart, were so ridiculous in their own ways that I could not even mock outrage. They just left me shaking my head. I was grateful for the other shoppers in each incident who let me know I wasn't completely crazy.

Eddies home!

My son Eddie an his girlfriend Grace are here for a few days. Eddies friend Nick is getting married today and they are all decked out for the wedding. Grace looks so cute for a summer wedding. Too bad it's about 58 degrees here

Feasting in Feasterville

We are still basking in the enjoyment of our whirlwind trip back East. I wrote about our two days in New York, but the focus of our trip was a wedding in Feasterville PA.

 Manhattan and Feasterville could not be more different, so it was like two separate trips. Both great, I might add.

I doubt I could or would have made this trip at all if not for the wedding. We received the save the date card months ago. Since it was  a wedding the date was not going to change and that gave me the focus and the time to consider going, make the arrangements and actually get on the plane. And I'm so glad we did!

When you attend a wedding 3000 miles from home and you don't really know anyone and still have a blast, that's a great wedding. Janine, the bride, is the daughter of Steve's client and friend Joyce. I've actually only met both Janine and Joyce once before though we've communicated on the phone and by email often and I had never met Paul, the father of the bride or Mike, the groom. Didn't matter. We were treated like family from the outset and included in lots of festivities. 


When we arrived at our hotel there was a gift basket waiting for us. It was full of cookies and treats, kleenex and sundries etc. I thought that was so sweet and figured everyone staying at the hotel received one until I saw THIS shirt for Maggie in the back of the basket and realized this was done specifically for us. Maggie loves it!

The wedding itself was beautiful. Janine and Mike have been together a long time and the love and support in both the church and the reception was palpable. They are good people who love  their families, friends, community and  each other and the joy was infectious.

Janine is a special ed teacher (I told you she was cool) and had these key chains at each place. They were made by a group of students in an  Autism class taught by her friend.  In lieu of any wedding favor, the bride and groom made donations to Autism Cares and Special Olympics.

Are you starting to see why I love these people?

I hope Janine and Mike have a wonderful life together. If even a a fraction of the love and support we witnessed at the wedding continues to surround them, they will be set. And it will because of the people they are.

Cooking with Maggie

Maggie is delighted that we are back and she can help me cook again.

She handles the equipment, I do the clean up.

Back to Reality

Maggie seems to have forgiven us for leaving her and we are slowly getting back into the swing of life here. Yesterday was a bit of a fog because we were exhausted. We didn't stop once in five days. By the time we arrived home Monday at 2AM Pacific time we had been up for about 20 hours straight. I planned ahead and had a nurse in the morning, but my body clock had me wide awake at 7 anyway.  I did grab a nap before the nurse went home so I think I should be back to "normal" today.

We hit the ground running (or walking) when we arrived in NYC. My friend Grace Young, the cookbook author,  lives in Manhattan and despite our delayed arrival she came right to our hotel on Wednesday night  and acted as tour guide and mentor for us. We walked around Grand Central Station, Times Square and Rockefeller Center and then walked to a new hot spot on the West side where we enjoyed this fantastic view of the city at night.

 Thursday we did all the touristy stuff and loved every minute of it. Of course I did not have the right shoes and have blisters everywhere. That made the walking excruciating, but I bought new shoes and band aids we kept at it. 


I was amazed how very friendly everyone was. Even Ironman was giving directions. (my favorite picture  from our time in NYC) 

 
When we arrived back at the hotel in the evening we found this tray of chocolate covered strawberries and a bottle of wine in the room waiting for us. It was from  from Steve's law partner Michon, who is now my bff. Bonus!!

I just enjoyed a glass of wine in the Waldorf Astoria and rested my sore and bandaged feet and thought life is pretty good

Chicken Little returns

We made it. We left Maggie for five days and the sky did not fall!

Lots to report but there's a certain someone who would is a leetle bit in need of some attention from her mother at the moment. She is not particularly happy with us, as you might imagine.

Wait until she realizes that I have now figured out that even though traveling is a ridiculous amount of work and requires organization weeks in advance,  it is not impossible.

Maggie really does love New York, but does NOT love her parents being THERE while she is HERE.

En route

We left this morning. maggie was stoic but a bit sad. There was bit of a delay taking off because a flight attendant became ill. Better before the flight than during I guess.

We were supposed to land in NYC at 3 but it is now 530 and we are currently in beautiful Syracuse new York. We were diverted here because I thunderstorms. It's sort of a joke because Steve is famous fro bringing rain with him on every vacation. (you are welcome for the respite from the heat new York). Generally he's camping or backpacking when this happens and everyone is miserable. This time we are dry and comfortable even if a bit cranky.

Supposedly we will take off around 7 but flights are being cancelled all around us. They say we will NOT be cancelled. I certainly hope that's right

Oh well. New York can wait a few more hours for us. It's the city that never sleeps, right?

T minus 45 hours

We are getting on a plane on Wednesday morning and flying across the country. And by "we" I mean Steve and me . Alone. Together. Maggie is staying here.  I have been working on the logistics of this for months and I think it's all in place. I won't know for sure unless something goes wrong. I have not slept in days and don't expect to for another week.

I received approval for five additional nursing shifts, though I have YET to see that in writing (and I've asked 5 times.) With great difficulty, I arranged for nurses to cover every shift even though one cancelled a shift just last week. I found a replacement.. The nurses all have their schedules and the relevant phone numbers. They all know they CANNOT cancel. I have a net in place if something doesn't work out with the nurses. There are holes in that net, but I have an emergency backup plan.  Tim is here. Dr. Aicardi, our wonderful pediatrician, is on alert and will help in whatever way is necessary. My mother and my siblings know and some will stop by and say hello to Maggie. Every single bit of laundry will be done. The oxygen man is coming today. I am bringing supplies upstairs to the dining room so that the nurses don't have to go searching for anything. I have prepared a medical folder with copies of the insurance cards and all Maggie's medical history in a file on the dining room table.  I am packed. I am ready. I am excited and I am beyond nervous. 


Vacations are so relaxing.

Chamber of Secrets, alright

When Maggie is cooperative, Steve reads to her. She is very picky about reading material though. He has read her the Harry Potter books - or at least some of them. It's a slow process because she will only tolerate a few pages at a time.

I came across the book sitting on a chair in the living room and had to take this picture. Who else in the world uses a catheter wrapper as a bookmark?

Nothing goes to waste in this house.

Abandoned

This article really got me down, but it does shine light on an important problem

This story is heartbreaking - from every perspective. A mom of a young mentally disabled woman abandoned her daughter so that the state would have to care for her. Because the young woman is 19 and technically an adult, the mom has no criminal liability for this because the mom doesn't have any legal obligation to provide care for her grown daughter.   I understand and believe that the mom had no choice; and I know there are very few services out there for disabled adults and it scares the crap out of me.

I wonder if Maggie will always be able to live with us. I worry that she will not.  I certainly do not have any plans to change anything, but I fret about that and how very hard it will be to place her somewhere else,  if some place could even be found. I know it would be the hardest thing I would ever have to do. I know many parents who have had to make that decision and no one does it lightly. Every family has to do what's right for them and for the disabled person in their life and those who make thoughtful decision have my respect, whether if I would reach the same decision or not.  

The mom in the story took her daughter to a place where she thought the young woman would get good care, and I suppose that is one small mark in her favor; but there are so many better ways to go about this. Pretty much anything would be better than leaving her daughter on the side of the road without any information whatsoever about her identity, medical needs, wants, like and dislikes. The young woman must have been so frightened. That part is unforgivable. 

I understand that the mom was at her wits end and did nothing illegal; but there is legal conduct and then there is moral conduct. 

I hope that young woman finds some love in Tennessee.

Get off the computer, Mom.

I may have just set the record for how many tasks one can do at a time.

This morning I got up very early and decided to go online. I know better than  to sit at the computer for even one second before I have Maggie all ready to go. It's so easy to flit away a few minutes and then a few more. That wasn't going to happen to me today, though. I had plenty of time. I got up and filled the oxygen tank and I programmed Maggie's dynavox while the computer was starting. Very organized and efficient.

That gave me a false sense of time security.

Suddenly I had about two minutes before the bus and 10 minutes of things to do. I quickly fed Maggie, put her jacket halfway on, put the tray outside and told the school nurse, who was already outside, that I was coming as fast as I could, put Maggie in the chair with just the leg straps and headed out the back door to the elevator.

I had the hairbrush and her trach scarf in my hand and the IPOD shuffle in my mouth. My plan was to brush her hair and tie the scarf during the 90 second ride downstairs. Of course I would have to do both with one hand because the elevator requires one to hold the button in place to keep it moving. No problem, I've done that before.

Just as we started down, Maggie did one of those coughs really needed to be suctioned. The Ipod, hairbrush and scarf moved to the same hand I was using for the elevator button and  I reached for the suction. Good thing I moved the IPOD, because I needed my mouth again. The tip of the suction was inside a glove for cleanliness, but it was stuck on the glove material. I pulled the glove off with my teeth. Not so sure about the cleanliness now, but I only bit the outside of the glove and managed to suction her while we were descending. I also managed to get her hair brushed before we arrived at the ground floor. .

The dog was barking furiously, which means the bus is outside. I opened the garage door, quickly tied her scarf and put the IPOD with the player. Nurse Janice, who had already retrieved the tray from the front porch, put Maggie's other arm in the jacket and together we did the chest and waist straps. The bus driver just grinned at the flurry of activity kindly dismissing my apologies.

As he loaded Maggie onto the bus, the driver said, "Now you have plenty of time." I just looked at him and said, "Now I don't need it. My work is done."

Songs in the KEY of Life

I manage to get myself into the strangest situations. Or maybe the situations are run of the mill annoyances that are made extraordinary because Maggie is present. Either way, it can be head shaking.

All day yesterday I carried around a card that I was sending to a friend. I wrote it early in the morning, addressed and stamped it. I went to the post office and forgot to mail it. I went out five more times and forgot to mail it every time. Late in the afternoon I was out with Maggie and her nurse, Joy. We were in the Inner Sunset District. I remembered the note and knew the post office there picked up mail until six o'clock and it was about 5:30. I was feeling quite smug about finally remembering, even though it will take the card less time to get to its destination than it took me to remember to put it in the mail box. 

I saw a parking spot and grabbed it. It wasn't a handicapped spot, but it didn't need to be. Maggie and Joy could stay in the car while I pop my letter in the box. All I had to do was turn off the engine and run to the mailbox about 30 feet away.


The car key I was using is the spare and it is a single key without a ring. I should not be using a single key. I do have a set of key with the van key on the ring, but I grabbed the spare as we were walking out the door because Joy and Maggie were waiting for me and I didn't bother to hunt for my keys.  The spare key is broken and cannot be attached to a ring. The key works fine, just the little plastic part that allows one to attach it to a ring is broken. Considering those keys cost $200 to replace, I figure this can be a spare. 
  
I pulled my single key out of the ignition and it flew out of my hand. I saw it fall down below the raised floor below the drivers seat. Remember the van floor is lowered about 18 inches to accommodate the wheelchair, so there are large metal boxes below the two front seats so that one's feet don't dangle in the wind.  Now the key was underneath this large box in a dark abyss.

OK, this is problematic. I was finally understanding why the key had a panic button on it, but of course I could not find the key to hit the panic button.

I was very close to the car next to me and had to squeeze out of my door. I opened the sliding passenger door on the van side and knelt on the street trying to see underneath the large box for the errant key. My legs were just behind the tire of the car next to us. I told Joy to tell me if anyone got in that car because they would run right over both my legs if they backed out, and, in fairness, they would never expect someone to be back there.

Incidentally, Maggie thought this was particularly hilarious.

I could see nothing. I flailed my hands all around and felt nothing. I dumped out my purse in case the other set happened to be in there. They were  not. I was stymied.

We could have easily walked home, it was less than a mile, but I could not get Maggie out of the car. There were cars on both sides of us and  no room to lower the lift. (see picture) We were trapped.

I felt incredibly stupid and I had no choice but to call Steve to come and rescue us. Steve is used to these strange calls from me and doesn't even lecture. He was still at the office downtown, and just started gathering his things and shutting down his day. Still, by the time he went home, located my keys and came to rescue us it would be at least an hour.  I told him I would try to get a stick or a coat hanger from someone and if I succeeded I would let him know.

Meanwhile. Joy is now kneeling on the ground and reaching as far into that dark space as she could. She could see something in the same space that I could see nothing. (old eyes don't work as well). Before I hung up the phone with Steve, Joy comes up with the key.  She was definitely the hero. I took it  from her very carefully and started to get back in the car.

Joy had to remind me to mail the card.  

SFMAGGIE

Took this picture of Maggie at the DeYoung Museum yesterday. This enormous map of San Francisco is in the observation tower. I stepped back and there was SFMAGGIE in the flesh.

Or, as I said on facebook, she's the queen in her throne surveying her realm.

For those interested, I joined twitter over the weekend. So far I've retweeted one thing. I'm still learning how it all works, but if you want to find me I'm coghlanmcdonald

Done deal

It's a done deal. I have been appointed Maggie's conservator. It really doesn't change anything, but protects both Maggie and us in the unlikely event someone wanted to cut us out of any decision making, especially medical decisions. 

When we arrived we had to watch a 20 minute film about the responsibilities of being a conservator.  The film was designed for someone who will be the conservator for an elderly person, which are the bulk of the cases. One person in the film summed up the responsibility as that of a parent watching out for the best interests of a child. Right. I get that. 

Fortunately we did not hook up Maggie's dynavox because she would likely have said what she always says when we are watching something: "I don't like TV." 

  

Steve and Maggie and I all sat at the counsel table together. I did manage to grab a picture of my co-counsel before the judge entered the courtroom  When the judge took the bench he greeted Maggie by name saying, "Good morning Mary Margaret."  She just gave him the stink eye as if to say,  How the HELL does he know my name. Steve asked her if she was going to wave but Maggie took that question under submission and continued to eye the judge suspiciously. I smiled sweetly at her and then the judge and said, "She'll wave in a minute." We proceeded with the hearing and sure enough about two minutes later, Maggie started waving like crazy (emphasis on like crazy.)

The entire hearing lasted about 5 minutes. The best part was when Maggie coughed and the judge visibly jumped in his chair. It is quite a jarring sound. We are very used to it but people hearing it for the first time are always taken aback and the judge was no exception.  Steve considered suctioning her but decided it might be better to wait. I had suctioned her several times during the film, but the judge wasn't present for that. Suctioning isn't really part of the decorum of the courtroom. (Obviously if it was necessary we would do it, but this was one that could wait.)

We waited for a few minutes in the courtroom after the hearing for the judge to prepare a modified order in his chambers. We set up Maggie's dynavox while we waited.  She immediately said "Mom is beautiful" and the bailiff/deputy sheriff started to laugh. Steve looked at him and said, "I'm sure you can't imagine who taught her that." 

I just smiled and said Maggie is good for my self esteem. The court staff loved it.

Day in Court

I am dressed like a lawyer this morning. Maggie and Steve and I head to court for the hearing on Maggie's conservatorship. I am basically asking the court to appoint me to do exactly what I have done for 18 years. When the child is under 18 and a minor, no conservatorship is necessary because the parent is legally making the decisions anyway. After 18, the parent has zero authority. Maggie turned 18 in March. Obviously, Maggie cannot make decisions for herself, or at least cannot make people understand what those are. She needs someone running interference for her and I'm asking that person be me.

I am virtually certain this request will be granted. In a case like Maggie's it's merely a formality, though the judge does want to make certain I am the right person for the job. (No one is opposing it.) I learned in the course of this process that only 7% of the conservatorship cases are people with developmental delays. The bulk of the cases are dementia and cases involving the elderly.When one can no longer make decisions for themselves they also need protection because elder abuse runs rampant, especially for those with money. People are ripped off all the time and having the court oversee things hopefully prevents that. Those appointed to serve as conservators have to report to the court periodically and account for the money and treatment of the person conserved.  Maggie doesn't have any money, except what she gets from SSI, but I presume I will still have to report to the court on some schedule.

 While I am happy that this will be formally in place, I am feeling the weight of the all of this. Perhaps its the court formalities, perhaps it's simply telling the judge in no uncertain terms that my daughter cannot take care of herself, perhaps its just exhaustion after 18 years of doing this; but I approach this hearing with some trepidation. Not a concern that I will "lose" but rather that it is automatic that I will not.

If and when the judge agrees with me that my beautiful, smart, entertaining but very disabled daughter cannot care for herself I will not really feel like celebrating.

Happy 4th of July

Gorgeous day here but the fog is supposed to arrive before the fireworks show, which Is an unfortunate tradition in San Francisco. No matter Maggie is ready for all the festivities.

I am making flag cake as i do every year and we are adding a new patriotic dish as well. How can anyone pass up red white and blue star shaped ravioli? How did we live before Costco?

Hope things are bright and shiny where you are.

Sleepless in San Francisco

Very little sleep for me last night. I went to bed and fell asleep fairly quickly, but I woke up about 2 in a panic and never really went back to sleep after that. Why the panic? Was there a problem with Maggie? No. Did the nurse take ill? No. Were there burglars, raccoons, skunks or other invaders? no no and no. I was imagining everything that could go wrong when Steve and I go out of town later this month. I knew the worry would hit sooner or later and I'm glad it took so long to arrive, but it's here now. 


Travel has been out of the picture for us for some time. Taking Maggie with us is unthinkable and leaving her behind is a logistical nightmare. We took a couple of trips when Maggie was little and we could carry her with ease and change her diaper without causing a public spectacle. Now she's bigger and has the trach and requires constant care. Taking our show on the road is not manageable, enjoyable or the least bit relaxing for any of us. Leaving Maggie behind requires an incredible amount of planning and scheduling of nurses, visitors etc so that Maggie is not completely bored while we are gone. It is expensive because we have to pay for the extra nursing shift out of pocket in addition to whatever travel expenses there are. It is easier to stay home and that's what we do. 


But every once in a while, you just have to make plans and go. In the 18.5 years of Maggie's life, we have gone away for a single night together twice. Last year we threw caution to the wind and went for two nights for our 25th anniversary. We were just up the coast and could drive home in 3 hours if necessary - and it almost was. One of the nurses was hospitalized and I spent about 4 hours of our 48 hour getaway frantically calling every nurse on the list to get a replacement. I managed to pull it off, but only because one of the nurses took pity on us. 

This year we are going for it. We are actually boarding a plane and heading to New York City and then to Philadelphia to attend a wedding. Steve and I have not been on an airplane alone together since 1989. That is 23 years ago - before the existence of Homeland Security or the TSA. You could bound onto the plane with shoes intact. I think it's time we tried this. We will be gone four nights and five days. I am really looking forward to it and I am  scared out of my wits at the same time. 


I have spent the last month or so working on this. I asked for and received approval for the cost of the additional nursing hours, so the cost is just the travel. I have been working on scheduling nurses with the admonition that they cannot cancel or get sick. The first layer of coverage is in place and now I have to work on a safety net - or an "on call" layer in case a nurse gets sick or injured.  I have to lay in supplies and medications and make sure Maggie gets out a little bit while we are gone. Tim will be here, and he will be a huge help keeping Maggie happy, but we will NOT be able to turn around and come home if something happens. 

Nothing will happen. Nothing will happen, Nothing will happen. Nothing will happen. 


I don't think sleep is in the cards for July.