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. 

Living on the Edge

Someone asked what kinds of things entertain Maggie. She is physically unable to do things other kids do, such as run around, hang out etc. She does not have the dexterity or the visual skills for video games; and those vision issues make it unpleasant to watch television and movies. She cannot use a cell phone and when she goes to the mall, it's generally with her old mother. 

 Despite these limitations of “normal” teenaged activities, Maggie has a great time. There are two reasons for this. First, she is the most easily entertained person in the world – she lives exactly in the moment – and second, she thrives on any human interaction, especially from peers. Hence, Maggie is thoroughly entertained by someone talking with her or including her in anything.

The best activities involve someone pushing her wheelchair very fast. This is true now and has been for  long time. When she was little, her brothers used to tear around the grocery store with her.  I would say “not too wild, boys” and other shoppers would stand frozen as they came tearing by. The surprised looks on their faces generally turned to grins when they saw how much fun Maggie was having.

My mother and I were reminiscing about an event like that at my parents’ 50^th wedding anniversary party. It was a fancy cocktail party and dinner at The Spinnaker in Sausalito. There were probably 150 people there including most of the 20 grandchildren.  This was 11 years ago; my kids and many of their cousins were too young to appreciate the cocktail hour and found other ways to entertain themselves. You can only eat so many maraschino cherries before you have to find something else to do. Several of them went outside to hang out on the deck. Eddie and Tim brought Maggie out there with them.  I always have one eye on Maggie.  I was aware of what was going on and not the least bit concerned.

The Spinnaker is a restaurant out on a pier and sits right on the Bay. In order to maximize the view the railing on the deck surrounding the banquet room is made of Plexiglas. From inside, it appears to be an open deck without a railing or protection of any kind.  It's difficult to describe, so I snagged these pictures off the internet.

It is a beautiful and serene setting unless, of course there are 15 or so Coghlan grandchildren tearing about the place.  

At one point, I was standing in a group of about 10 or 12 of my parents friends – who were all in their 70s at the time – when a couple of them gasped and everyone turned their attention outside. Eddie was pushing Maggie as fast as he could across the concrete deck with Tim and a half dozen cousins running behind.  The group I was in was starting to panic, as was another group with whom my mother was standing. They thought the kids were racing wildly with Maggie on an unprotected walkway with a straight drop into the water. They were horrified. I laughed and pointed out the rail, which was all but invisible.   

I believe there may have been another round of drinks for that crowd before we sat down.

My mom told me some of her friends still mention that image. It took them a little longer to break into grins, but once they did, the image was lasting. 

Howdy Neighbor!

I received one of “those” calls last night. Nothing major but it gets the heart beating a little faster. Seems Tim over corrected as someone turned into his block and hit his neighbor’s car. Since Tim and Eddie moved into this house on August 1, this is not a good way to meet neighbors. Still, it was minor, and no one was hurt. I like to think these little things make it less likely that something big will happen. 

I cannot get mad at him; I did something worse to one of my neighbors a few years back. (Some of you will remember this story.)

Now that there is a two hour time limit it is better, but parking on my street used to be impossible day and night.  Our street was the closest unrestricted parking to USF and the hospital up the hill and getting a spot on the street was a nightmare.  I had to use the driveway between errands. That should not be a big deal, but our driveway, like everything else about our house is narrow and there is not enough room to get the wheelchair ramp down and load Maggie into the car. Generally, what I did was bring Maggie downstairs,   “park” her where I could see her and back the car into the street, put the ramp down and load her up.

One day I did just that. Maggie was sitting in her chair just under the door. As I got into the car, Eddie arrived home from school. He said hello to Maggie and me. I got into the car to move it and he proceeded upstairs.  The button to close the garage door is at the bottom of the stairs. As Eddie walked by it, he instinctively pushed the button.  As the car slowly backed up I saw the door coming down and it was going to hit Maggie.  I JUMPED out of the car and screamed for him to stop the door. EDDIE EDDIE EDDIE EDDIE HIT THE BUTTON!  (Why didn’t I push the button in the car? I dunno. Why didn’t I just hit the door, which would have stopped it? I dunno.)  He hit the button immediately and the door stopped. Maggie was unharmed.

Crisis averted.

Or so I thought.

I turned around and the car was still in reverse and backing itself out of the driveway. I screamed again and ran to get to it before it hit the car across the street.  I tried to jump in but it was moving. Of course, the door was open and in my head I was doing some sort of mathematical analysis to figure out how I could get around the door and into the car and hit the brakes before it smashed into the parked car. I was yelling through the whole thing – which was no more than 10 seconds.  About ¾ of the way across the street, I knew it was impossible. I just threw my hands up and watched it crash into a car across the street.

Immediately some random passerby started yelling, “I saw that! You have to leave a note or it’s a hit and run.” I just looked at him dumfounded – “Buddy, I live RIGHT THERE (pointing at my house 10 yards away) where do you think I’m going to go.”

I moved the car back into the driveway and got out to find Eddie standing next to Maggie looking shocked.  We were both silent for a moment and then Eddie said, “I’m sorry mom, but that was HILARIOUS!”  He started imitating me screaming and waving my arms and then just throwing them up as it was clear I could not prevent what was going to happen. I looked at him for a ling minute but he was right and we both started laughing.  

From that day forward, Maggie has parked either in front of or behind the track of the garage door never directly underneath it.  On the upside, I did get to meet a new neighbor that day and she turned out to be very nice and understanding. And yes, I paid for the damage to her car.

Big Brother is Watching

Maggie's oldest brother Eddie came home this weekend. We hadn't seen him since April, so it was good to have him here for a quick visit. No one was happier than Maggie, though.

Maggie is very good at living in the moment. We could all learn something form her ability to do that. She is happy every day, but when her brothers are here, she is over the moon. Everytime Eddie came into the same  room as Maggie, she would laugh uproariously as though this was the first time she had seen him in months. When we went out for our 4th of July walk in the park  she reached out for Eddie on his bike to make sure he was gonig to join us, which he did. 

 He went into the basement for about 5 minutes and when he came back upstairs she stopped working on her sentence, reached her hands out for him and laughed. It was a great big WELCOME HOME over and over again.

If both boys come home at once, we may have to sedate her.

Cyber Monday

Everybody complains about the Monday after a long weekend. It is difficult to get yourself up and back in the swing of things. Not me. I am always happy to start the routine again. Once Maggie gets on the bus and leaves for school the day is mine. It is not that, though. Maggie is happiest when she gets to go to school. Social activities are extremely limited for her and school is a wonderful social outlet for her.

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.

Outside the Box

Having a family member and especially a child with multiple disabilities has some obvious difficulties. Friends and strangers alike express concern for Maggie’s well being or offer blessings and prayers for her and for me, as her mom. Other than Maggie, I am probably the focus of most of the sympathy and prayers. It is kind and thoughtful, but a bit disconcerting at times, especially when it is coming from strangers. I’m not looking for sympathy, but I appreciate kind efforts to understand that there are differences in my life because of Maggie. The fact that strangers can only see the negative changes is not my concern.

My husband does not have to deal with the comments from strangers as much as I do. There are a couple of reasons for that. I spend more time out in the world with Maggie than he does and encounter people more often. Many of the comments come from other women, who may be more comfortable approaching a mom than a dad. In addition, Steve is much better at blowing people off than I am. He does not care what anyone thinks or says. That may sound like he is cold, but he is not. He is content and does not need input from strangers about his family. Though his experience with strangers is different, he does get the same amount of concern from friends and family. Steve, as dad, has all the same emotional pressures that I do. In addition, his freedom is enormously curtailed by our inability to travel or just take off for a few days. On top of that, he had to become the sole financial support for the family.

The impact on my sons’ lives was/is more subtle. Now that they are away at college, the day-to-day impact is less than it was. However, growing up with a sister as medically fragile and disabled as Maggie was had its challenges. They spent a lot of time in hospitals and doctor appointments. It seemed like Maggie had a medical crises on Tim’s birthday three or four times. They got a lot less attention from me. And medical issues? Please. Nothing could compare to what Maggie was going through so scraped knees and turned ankles were not treated with the same concern they might have been. The boys were shipped off to “visit” cousins a lot. The family was great at welcoming them and making it fun, but they knew there was no one at home to watch them. As they got older, they were frightened for Maggie.

Maggie’s disabilities became a central issue for Eddie in grammar school. Actually, the issues were not so much for him as for the teachers at the school. The slightest bit of misbehavior or sadness was immediately attributed to his “situation”. At a parent teacher conference, I was frequently told, “you know he HAS a disabled sister.” (No! really! I had no idea.) I offered to bring Maggie in and explain her differences to the students (and faculty). No thank you, not interested. I ignored that for a while thinking these women would wise up. When they did not, and I heard again about his disabled sister I said to the nun, “Well, yes sister, but we’re KEEPING her, so what do you suggest?” I was the one who wised up. I realized they had put Eddie in a box where he didn’t belong and were not the least bit interested in letting him out or learning anything about it.

Shortly after that, we switched schools. Best thing we ever did, for the boys and for all of us. We went to another school (also a Catholic school) where they jumped at the chance to learn about Maggie and let the boys be little boys. The school was supportive and helpful, not closed minded and judgmental. Soon after moving to the new school, both boys realized that when they were pushing Maggie around the schoolyard, they were far more likely to get the attention of the girls in their class. In their adolescence, we referred to Maggie as a “chick magnet”, a role Maggie loved.

As the boys got older they were far more cognizant of the dangers of Maggie’s medical conditions, but it just became part of the fabric of our lives. They would hop into her bed in the ICU, read her stories, and watch TV. They would listen to and understand what the doctors said and figure out how long until we were home and things would return to “normal.” However, “normal” in this house is different from normal in other houses. They were the only ones in high school to learn to drive using a wheelchair van. They were the only ones whose friends were pressed into service moving medical equipment when they came to visit. They were the only ones whose parents were ALWAYS home.

Then and now, Maggie is just their little sister. The differences in her life and theirs are part of the men they have become.

As I’ve said a million times, different does not mean worse.

Big Week

Monday Morning. One week until school starts!! Yippee. Maggie loves school and I love the freedom that the school day brings. Before Maggie goes back, however, her brother Tim leaves for college. He's going to the same school as our older son Eddie. It was a big adjustment when the first brother left and this one will be even tougher. With both of them gone Maggie will be stuck only with us. I'm not sure Maggie gets that, even though we've told her many many times.

Both boys really hang out with Maggie when they're home. Tim holds her in the chair on lays on the floor holding her while watching TV. Maggie doesn't really watch TV because of her visual impairment, but she LOVES watching her brothers react to the television. Both of them include her in their chatter or commentary about whatever they're watching and she loves that. They can be watching the most violent gangster movie and Maggie's just cracking up. If they're watching something funny she laughs at them laughing. Often she's laughing so hard we have to make sure she's still breathing. It's not the same with the old parents.

Tim leaves Wednesday. It's hard on Mom and Dad and it will be very hard on Maggie. I don't really think it will be that easy for Tim either. Starting college is scary for anyone. He's lucky that he will have his brother Eddie in the same town, but I doubt he'll need that after the first week or so. Tim is very close to Maggie and she adores him. He is going to miss her more than anyone else.

Above: Tim and Maggie with the birthday cake she helped prepare. Right: the prep