Monday, November 30, 2009
Over the long weekend, she had fun visiting with cousins and was very excited to see her brother Eddie; but it is passive. People come to her, say hello and go about their other social obligations. Maggie is left behind. Part of that are the physical challenges presented by her wheelchair and the equipment and part of it is Maggie’s own stamina. She just cannot do too much without running out of gas. That keeps her on a rather short tether.
I am as guilty as the next person is when it comes to leaving her behind, and I feel terrible. On Thanksgiving, for example, we were hosting Steve’s family and had to cook for 17 people. Once everything was ready, I took the boys and stopped in to say hello to my mom and my siblings who were gathering at my mother’s house. I took the boys, but left Maggie and Steve at home. If we took Maggie we would have to take her down in the elevator, load her into the van, unload her at my mom’s, carry her up the stairs hold her the whole time we were there, carry her back down, strap her into the chair, load her into the van and bring her home. The 45-minute stay would have been 10 minutes and then it is just not worth the effort. Therefore, Maggie stays home.
It is easy to justify this. Maggie would not have any fun, Maggie would be overwhelmed, Maggie would be overtired etc etc. All of that is true, but it still makes a mom feel guilty.
Fortunately, the cousins arrived here before we even got home, so Maggie did not feel too left out. Thanksgiving was fun for her and everyone else. Friday was quiet and we just hung out putting things away from the Thanksgiving fete. She was happy because her brothers were especially attentive. Eddie shaved his head last week and looked like a marine. At first, she was shocked, but soon started laughing and kept rubbing his head whenever he was in reach. That was very entertaining.
Though her social interactions are far more limited than those of most people, there is another fact about Maggie. She is very easily entertained. Sitting with her for a few minutes, reading her a book, or simply including her in the conversation makes her extremely happy. Maybe that is necessity acting as the mother of invention or maybe it is the balance of nature. Maggie cannot do much for entertainment, but it does not take much to entertain her.
Wednesday, November 25, 2009
After my quick (and very moving) trip to Anaheim on Friday I was home for less than 24 hours. I went to VEGAS with my sister Joan from 11:00PM Friday night until Monday morning. I did not win any money, in fact I lost. My lucky sister apparently won the money I lost. Next time I'm just going to write her a check and skip the trip.
I returned just after Maggie came home from school Monday and really got the cold shoulder from her. How DARE I consider taking a break. She's over it now and we're friends again.
When I got Maggie off to school on Tuesday morning I went straight to the super market. Tomorrow I'm having 17 for Thanksgiving dinner and at that point had purchased only the sweet potatoes. I was getting a bit nervous about everythign I had to do. Now that the refrigerator is full to bursting, I feel better.
Today Maggie is off school and I cannot spend any time on the computer or she gets mad. I guess I owe her some undivided attention. (The nurse just arrived, so I snuck away for a quick post).
I will be back after this Thanksgiving hubbub dies down. In the meantime I wish everyone the best Thanksgiving. I hope you are surrounded by family and/or friends and have a feast.
Thankful: I'm behind on these. I'm thankful for the following:
- a beautiful clear day in late November,
- getting a break,
- my sister Joan's joie de vivre
- my understanding husband who picked up the slack
- all of you who read about my life
I'm also thankful that
- Maggie missed me but still forgave me for leaving
- Eddie will be home later today
- Tim is here
- we will all be together with Steve's entire family
- I can pop in at my mom's house and say hello to (most of) my extended family
- and that the best Turkeys' in the world are sold at a store two blocks from here. I just walked over there with my old lady shopping cart and strolled home with a 23lb bird.
Friday, November 20, 2009
Bad news: the noise is still there.
Oh well, at least I know it is safe. It's the lift assembly. I have to go to another other place to address that. I can live with the noise as long as I know the car isn't slowly cracking in half.
I't's 5:24AM and I am leaving in 10 minutes for the airport. I have to fly down to Orange County for a funeral today. A very kind man is being laid to rest after a very long and successful life. It is an honor to be able to pay my respects to him as well as to his wife and daughters.
This is a quick trip. I will be back at 9:00 P.M. and I'm sure I will be tired.
Thankful: Today I'm thankful that I knew Leonard White.
Thursday, November 19, 2009
The noise in the van is directly related to the loud clunk I heard as I hit a manhole cover last week. Maggie was with me in the car and we were driving through an area that was getting re-paved. There was no pavement and the lanes were set by cones. I went very slowly because it was tricky. Good thing. I didn't realize that without pavement the manhole cover was sticking up several inches. My van is lowered to accommodate the wheelchair lift.
All of a sudden - wham! there was a huge noise right beneath Maggie's wheelchair. She thought that was HILARIOUS. She was laughing so hard she was straining her body. I thought she was going to break through the harness on her wheelchair.
I didn't hear any problem initially, so we just kept on truckin. Over the next several days I noticed a noise emanating from the rear right tire when I started and stopped. Hopefully it's as simple as a shock absorber, but that takes the kind of luck that generally eludes me. I probably messed up the suspension. I have visions of the car getting worse and worse until the wheel just falls off while on the freeway. Hence it was time to get it checked out. I will know soon enough.
In the meantime I walk. Keep a good thought that whatever this problem is it's not too expensive.
Today I'm thankful for long sleeves on a cold day and for pavement. Ok, I'm a city girl, so I'm always thankful for pavement, but today more so because of the dangers it hides.
Tuesday, November 17, 2009
I went to bed at the normal time, around 11:00PM. Tim went out just as I was going to bed. His plan was to help his cousin with an experiment for class. They needed six males and were just a block away. He said he'd be home at 12:30. I left the hall light on and went to bed. At 2:30 I woke up and the light was still on. I know he's 19, but it still makes me nervous.
I texted him. He returned the text, they decided to go to Ocean Beach to watch the meteor shower. In all my escapades when I was young I never once used the meteor shower line. But it was actually true, I heard it on the news yesterday. Copernicus returned home shortly thereafter.
I went back to sleep only to have the phone ring at 4:30. It was the nurse from downstairs. Maggie pulled out her trach. I was downstairs in a flash. The nurse was holding the old one in place. It was amazing she could reach the phone from there. I went right to work and put in a new one and tied it. I went back to bed again, but sleep was elusive.
All I could think about was needing to stay awake to drive to Sacramento and back today. That's 200 miles driving alone. On very little sleep. And, unlike my scientific son, I am NOT 19.
That's why caffeine is my friend and constant companion. I will just wire up and hit the road.
I have to be back here before Maggie gets home from school. The guy is coming at 3:00 to repair or replace one of the the suction machines. Generally it's good news when something "doesn't suck."
Monday, November 16, 2009
Juan is unable to speak and uses a dynavox as well. He does not need the buttons like Maggie does, but just uses the communication device directly. When Maggie wants to talk, she hits one switch to move the “cursor” to the thing she wants to say and, once there, uses the other switch to actually say it. When Maggie gets going, she can fly through the screens and selections to say exactly what she wants. When she is not in the mood, she just sits there smiling as if to say, “You know what I want, just do it.” Juan will have none of that. He takes her hand and hits the button with it as if to say, “C’mon, get with it.” Maggie responds to him.
Maggie did not need any prompting on Friday, though. I programmed her talker so that she could say "Happy Birthday Juan" in spanish, which is the language Juan's family speaks at home. It's simply Feliz Cumpleanos. However, that took a while becaue the dynavox doesn't recognize spanish words and I had to spell them phonetically. I believe I entered it "Felleez coompleeaanyos." He loved the message and so did his mom. (Maggie's making points with the mother.)
There are six kids in Maggie’s class and I assumed the party would be those students, the adults in the class and a couple of parents. I arranged my day to get to Juan’s party at 1:00PM, just as it was beginning. Or so I thought. When I arrived at 1:05, there were at least 25 people in the room. Juan made invitations on the computer in the classroom the day before and went all over the school distributing them. Even the principal stopped by. It was a happy group of people.
Juan was decked out in a suit and tie, and he looked marvelous. He greeted each person, including me, with a big hug. When the noise became too much for him he put on his headphones for a few minutes until he was ready to deal with it again. He is a man who knows how to handle himself.
I did get one picture of Maggie and Juan with my phone. However, I missed the best part. I received an important call and stepped out of the room for a minute. While I was gone, Juan was dancing with Maggie, holding her hand and twirling her around in the wheelchair. The teacher and nurse were looking for me, but I was in the hallway. Of course, it happens the minute I step out.
Then again, maybe it is no coincidence. Juan saw the old lady was gone and made his move.
Gratitude: I am thankful Maggie has such wonderful people around her. In all honestly, I am also thankful Maggie is not 18 yet.
Thursday, November 12, 2009
Maggie loves it, but she does not get to go to the grocery store very often. I’ve mentioned before how much of a spectacle we are. I have to push the wheelchair and pull the grocery cart. We are a train chugging around the aisles. Early Saturday is the perfect time because the store isn’t crowded. Driving that train through packed aisles is impossible. Other shoppers are quite taken aback at the sight of us. Many are overly helpful. I get an almost pleading, “Can I DO something for you” to which I respond (overly cheerfully),” Nope, just grabbing a gallon of milk.” The fewer people in the store, the fewer conversations and the easier to get around.
I was just about finished when I decided to bring home some doughnuts for breakfast. As I neared the bakery department a priest entered the store. I presumed he was a Catholic priest because he had on the black suit and the collar. He was probably in his 60’s, tall and thin and carried himself in a very regal manner. He took in the scene with our little train and gestured – something between a nod and a bow. Anyone who’s spent any time around a priest will know the move. I smiled at continued my trek toward the bakery.
The doughnuts are in a free standing case for self service. As I moved toward that the priest was standing in front of me, looking me in the eye and pointing at me. I wondered if I knew him. I was raised in this neighborhood and know people connected with all the parishes around there. Nope, his face was not familiar. Then he spoke. In a thick Russian accent he said “Got ez tadusteeng gyu” Say what now? It was almost accusatory. He said it again, and I realized he was saying “God is trusting you.”
Oh, ok, thanks.
Don't get me wrong; it's nice, but it's freaky.
He approached and took Maggie’s face in her hands and said some prayer. The look in her face was priceless. Her eyebrows were knit together and she was frowning at him. I tried not to laugh. He looked up again and said “God is trusting you” again. I smiled thinly and he walked away.
I looked down at Maggie and said, “Well, if God is trusting me, I better not steal these donuts.”
Today's gratitude: I'm thankful for the free coffee my son gets every week working at Starbucks.I'm particularly thankful for the Verona blend.
Wednesday, November 11, 2009
Get your hankies out and watch this clip. YOu'll be thankful too
Happy Veteran's Day
Tuesday, November 10, 2009
Monday, November 9, 2009
1) I'm gratefufl that people are reading this close enought to catch that omission.
2) I am grateful that Eddie was riding his bike with his medic roommate when he crashed.
3) I am also grateful there is so much granite in the world and my new kitchen counter will last as long as Yosemite.
When we moved in it needed everything. We tackled things slowly over the first five or so years we were here. The original kitchen, complete with trash burning stove, was still here and was in desperate need of remodel. It took us a couple of years to get to it. We were broke, had a baby, etc etc. In 1989, we gutted the whole thing and remodeled. Over the years since, we have replaced the floor because of water damage, redone the lights and replaced each appliance at least once. However, the cabinets, countertops and overall design have not changed. It is perfectly functional. A bit tired, perhaps, but functional.
All work done on the house since then has been to accommodate the wheelchair and Maggie’s needs. We talk about changing things in the kitchen, look at stores and magazines for ideas, but we just never get to it. The talk has been entertainment enough.
On Saturday, almost on a whim, we went to a granite place and ordered new granite counter tops. They are beautiful, darkish green granite. They will be installed after Thanksgiving. It could have been sooner, but we are woefully unprepared for installation. The old counters, backsplash and sink have to be removed. We have to purchase a faucet and have everything ready to go. Once installed we can’t use the countertops for three days and I can’t take the chance that prepping Thanksgiving dinner would have to be done without counters, so we will wait.
The problem with this is that now we have to replace the backsplash, and the floors will not match. Ca-ching! In addition, if we are going to need a new stove and dishwasher in the next year anyway, maybe we should just get it now. CA-ching! We are debating those extras but we are proceeding with the granite installation. You have to start somewhere. I can live with mis-matched stuff for a while. With Maggie and her needs, we cannot simply move out and have everything done at once.
Our floor choice will be extremely limited. We want to get tile, either natural stone or porcelain. Steve pointed out, however, that we will have to stop Maggie from “cooking.” You may recall Maggie “cooks” by flinging the pots, pans and anything else she can reach onto the floor. The crashing will break tile and dent natural wood or laminate. I said no. She gets to keep doing that because there are so few things she really has fun doing. If we have to have a resilient floor, so be it. Resilient is my middle name.
The excitement of the new purchase was dampened by a phone call from Eddie, the bike-racing son. He crashed on his bike and was enroute to the emergency room with a self-diagnosed separated shoulder. His diagnosis was spot on – perhaps because he is experienced with this particular injury. He has done it before.
He is the one who needs the resilient floor.
Friday, November 6, 2009
Around dinnertime, I was just getting ready to go meet a friend of mine whose daughter has extensive disabilities as Maggie does. I am very lucky to have a group of parents with whom I can connect. Maggie was in her bed and the nurse was just lowering the side of the bed so that we could catheterize her together before I went out. Maggie’s bed is high. The mattress is just below chest level for me. It is perfect because Maggie can be safe and the caregivers do not have to bend over constantly to tend to her needs. The side of the bed simply folds down like a flap so that it is against the bed when it is down. You have to stand back for just a second to give it room to come down.
I was standing at the head of the bed while the nurse lowered the side. We have done this a million times and it is just automatic. When the side was at about 90 degrees, Maggie moved unexpectedly and rolled right onto the outstretched wooden side. The nurse was holding this with one hand when it suddenly became 65 lbs heavier. I screeched and lurched for Maggie and lifted her right back on to the mattress without incident. Maggie looked surprised and we both looked frightened. Fely, the nurse, remained professional. She never reacted at all. I do not know how she held that thing in place but she did. Crises averted, but it is a good thing there were two people there.
I went to dinner knowing that Steve and Tim would be home a few minutes later. All was well. When I got home, Maggie was wide-awake in her bed throwing pillows and anything else she could find. I talked to her for a while and then sat and talked with Steve.
The nurse was coming in from Maggie’s bathroom and I suddenly heard the nurses alarmed voice calling “SALLY! SALLY! SALLY!” I was in there in one step. Her trach tube was out and sitting on her chest. HOLY MOLEY! This time the nurse was panicking and I was just quickly getting a new one in. We keep a supply of clean trach tubes taped to the head of her bed. The rule of thumb is to keep the correct size tube and one smaller in case there is difficulty getting a new one in. You have to move quickly so that she doesn’t get into respiratory distress. (Note: the ostomy (opening) contracts quickly). Maggie was fine, in fact, she was grinning like a Cheshire cat. She loves to make everyone jump.
We have to change her trach tube every week. There are many times that Maggie has broken the tube because she is constantly pulling on the ties. She even does it in her sleep (see picture - note the knot is on the opposite side from where she is pulling).The flange gives way and we have to jump to change it. I presumed that’s what happened this time, but no. Steve looked at it and said, "it’s not broken, she unknotted it." Apparently, while the nurse was in the bathroom and I was out of the room Maggie was bored and went to work on the ties that hold her trach in place. The trach ties are triple knotted to prevent this, but Maggie is very persistent. She was probably working on that for hours whenever she was alone.
Because of the advances in the world, many (most) trach users have Velcro ties. I laughed at that knowing that would not even present a challenge for Maggie. Now she can get triple knots out. Great. I am going to have to get out my Girl Scout manual and find some new knots.
I am meeting other friends for dinner this evening. I think I will sneak out and sneak back in.
Today's gratitude: I'm thankful for many circles of friends
Thursday, November 5, 2009
We have two cars and we have a house that has a garage for one car and a driveway for the other. Theoretically. We cannot really use the garage to park a vehicle because we need to get the wheelchair through the garage to the elevator in the backyard. There isn’t room for both. Because of that, the garage has slowly filled up with stuff. It is ridiculous and out of control. I have to fight to keep a path wide enough for the chair to get through. It would not surprise me if Oprah showed up to expose this so that the viewing public could marvel at how strange this is and blame our behavior on the stress of having a disabled child. Actually, we just have too much junk.
Even without a spot in the garage, we still have the driveway, right? Well, not really. We leave the driveway open for the night nurse because it is impossible to find parking at 11:00PM. Now we cannot use it during the day much either. Recently, the City made our street a two-hour parking zone. Because we are residents, we have a permit that allows us to park on the street all day. The permit, a sticker on the bumper cost a lot, but far less than the inevitable parking tickets I would get. The school nurse brings her car here and rides the bus with Maggie. Her car is here all day every school day. Now I give her the driveway during the day so she won’t be ticketed every single day. That means I have free rein to use my driveway from 3PM until 11:00PM every day. However, I had better get the car parked on the street before 11:00PM or I can plan to spend 20 minutes searching.
On top of this constant dance, there is street cleaning. You cannot legally park your car on the side of the street being cleaned on certain days. On our side of the street, it’s the first and third Tuesdays from 8-10 AM. On the other side, it’s the first and third Thursdays. It used to be every week, which was actually easier to remember. Now I feel like I have to consult a sundial and a calendar to determine whether I have to move the car. In October, there were five Thursdays but only four Tuesdays. It is too much information to process. We have to pay $53 a pop when we forget, which is definitely several times a year. Inevitably, I hear the street cleaner coming and yell, “Where are the Cars?” but by that time, it’s too late. The parking ticket people come before the street cleaner. Perhaps today I will pay for the ticket we got two weeks ago.
Today is the first Thursday and both cars were on the wrong side. I put Maggie on the bus and saw there was no parking available yet. I needed to wait for people to start leaving for work. I set the timer so I would not forget. At 7:50, I moved both cars to our side where they could sit until 12 days from now when they clean our side.
Unfortunately, we may have to use them between now and then.
Today's Gratitude: I'm thankful for my kitchen timer.
Wednesday, November 4, 2009
I can tell you this, though – that sharp instinct was not maternal, per se. It was something that kicked in only for Maggie, not necessarily for the boys. Maggie’s life and death situations honed my responses to such a fine point , that I often overlooked the bumps and scrapes of everyday childhood. None of those compared to rushing off to the hospital for a neurosurgery. I guess I was something of a specialist but couldn’t hack the general practice.
As I my boys can tell you, if they weren’t bleeding or on fire, they got zero attention from me for medical issues.
The best example of this happened in 2007. That was a rough year for us. My dad died in January of that year and then in March, Maggie became very ill and spent over three weeks in the hospital. When she came out she had the trach and her care went from complicated to ridiculous. There were numerous complications and emergency trips back to the hospital after that and things have really never been the same since.
In the last week of August of 2007 Tim had just started his senior year of high school. He complained about a stomach ache and I ignored him. He complained the next day and I said, without even looking up, “it’s probably just the start of school and the change in your schedule.”
In the middle of the night on Thursday of that week he came into my room doubled over saying in a desperate voice “You’ve got to help me.” Allright. I got up and went downstairs with him and gave him a glass of water. Maggie’s nurse was here and said, “Sally, you’ve got to take this boy into the hospital.” I said “ok” but didn’t really share her concern.
Because I spend a lot of time in Emergency rooms, I prepared myself for a long stay. I made a pot of coffee and gathered the crossword puzzle and other parts of the paper I hadn’t read. The nurse was pacing nervously and Tim was clearly uncomfortable. Steve stayed behind to deal with Maggie in the morning and finally we left for the hospital. I still felt like I was placating the nurse and Tim.
Once there, it took about five minutes to diagnose appendicitis.
Yeah. I felt pretty bad. I apologized to Tim over and over. He was on pain meds until his surgery several hours later. Once the pain was gone, he didn’t care.
It has actually become something of a family joke. Tim told Eddie not to worry if there is an emergency and he gets real sick, mom will be right there with a glass of water.
Hey, it's the least I can do.
Thankful- November 4 another beautiful day in San Francisco. I'm thankful Tim is taking the car today so I have an excuse to walke the dog in the park.
Tuesday, November 3, 2009
Last Friday Maggie finally got her flu shots. It was October 30 and she went into the doctor’s office in her pirate outfit. I did have to remove the pirate ship from the outside of her chair, though. My van can fit her wheelchair, but alas, mateys , no room for the good ship.
We were scheduled to go in a week earlier, but Maggie was having some respiratory problems and we had to delay getting the shots. On Friday there were some squirrely symptoms in the morning, but we decided to go for it. It’s a balancing act, trying to figure out when she’s healthy enough to get the shots. Of course I don’t want her to get sick, but I don’t want to miss the window for the flu shot either. It was worth the chance on Friday because I could keep a close eye on her all weekend.
The flu clinic is upstairs, but we cannot get up there with the wheelchair, so they were going to do it in the office. The doctor told me to have the person come out to the car so Maggie would not be exposed to all the sick kids in her office. That would have been great, but the parking lot was jammed and we could not get close. We ducked inside and she received the inoculations in the hallway.
The H1N1 was a nasal spray and that just shocked Maggie. She looked insulted when not one, but two nostrils were infiltrated. Before she even recovered from that, the seasonal flu vaccine was being injected into her arm. Maggie quickly drew in a breath when the needle hit. I waited for the tears or sad face or something, but it was just the opposite. By the time the needle was out Maggie was laughing her head off. The medial assistant, a passing doctor and I all started laughing at her. There she was, dressed as a pirate, with the tattoo on her cheek laughing at the pain. It was as though she was saying “Really? Is that all you got”
I am thankful for that attitude because it is probably a huge reason she has survived all the surgeries and illnesses over the years. Besides, it’s very entertaining to watch people when the little girl in the wheelchair surprises them with her strength or sense otf humor or intelligence or whatever.
Monday, November 2, 2009
November is Thanksgiving time. Everybody know that. But one day with relatives and turkey and pie just isn't enough. I think the whole month should be dedicated to giving thanks. And that's what I'm going to do. Everyday for the month of November I'm going to state at least one thing I'm thankful for. Might be big, might be trite. But it will do me good to note the good things in my life. After today I'll just add these to the bottom of my posts.
Focus on something positive every day for a month. Not a bad idea.
November 1 - I'm thankful for lighter mornings, leftover Halloween candy and living in walking distance to the museum so we could enjoy a day with Maggie.
November 2 - my sister Kate's birthday. I'm thankful for her and all my sisters and brothers, my mom and all my family. I'm also thankful for 80 degree weather in November.
Back to our regularly scheduled program tomorrow.