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. 

Bobble Head

The weekend started off with a bang.  Actually, it was more like a snap. At 5:30PM on Friday, Maggie’s headrest snapped off her wheelchair again.  You may remember this repair was done a few months ago and the Wheelchair tech pronounced is “Maggie proof”. I doubted him then and told him never to say anything like that out loud. Just goes to show you…

Maggie cannot use the chair without the headrest and I thought we were facing a long weekend of laying in bed or lying on the floor, but we forgot that Dad is a mad scientist/genius. He put some brackets on it to hold it together until we can get it fixed today. It is very wobbly sided to side, and Maggie looks a bit like a bobble head, but it’s usable. Dad saved the weekend!!

Good thing, too, because Maggie had some plans. On Saturday we were hobnobbing.  Maggie and I  attended the campaign kickoff for Margaret Brodkin’s run for the San Francisco School Board.  Anyone who has raised a child in San Francisco in the past 30 years knows who Margaret Brodkin is; or they have benefitted from some program she created even if they don’t know her name.  She has been a tireless advocate for children, and has made a few political enemies in this town because she doesn’t compromise her devotion to children. If you want more info on Margaret Brodkin and her campaign, check her out here or on Facebook. If you go to her facebook page you will see this picture of Maggie and I with our friends Lily and Lori.  (you can see Maggie looks less than comfortable because her headrest is loose.)

 Lori is one of those moms I talked about a couple of weeks ago. We connected when our girls were very young and have been a source of support for each other ever since. Lily, who just started high school, is on the Youth Commission for San Francisco.  Margaret Brodkin acknowledged Lily and another member of that commission in her speech. Maggie and I just basked in her fame.    

Sunday Maggie and Steve and I headed up to the Marin Farmers’ Market. It was lovely and I thought Maggie would really enjoy the nice weather, the colors and the aromas of the market. Meh.  She was less than enthralled. I don’t think it’s very comfortable for her to have that thing moving about and she has to concentrate too hard on her to relax and enjoy herself.  I liked it though and we had a delicious dinner with the bounty from the market.

 I sent her to school this morning in that wobbly chair. The first appointment I could get for a repair is at 2:00 PM. I will just pick Maggie up at school at 1:30 and we will head down there together. Maggie and I will hang out on the mat while the chair is repaired. I will caution Chris, the wheelchair tech, against making any proclamations about the chair being Maggie proof.

If she hears that, it becomes a direct challenge.   

New School Year

Busy week 'round here. We are a bit short on postings. Or maybe I've just said all there is to say.

Naaaaah!

Maggie is settling in to a new school year. She has a new teacher and new aides (paras) in her classroom, but the classroom, Nurse Janice and most importantly, the kids are the same so adjusting hasn't been too tough. Her new teacher, Ms. Durkash, knows all the kids because she was the inclusion teacher at Mission last year. Even though she's in a new role as Maggie'actual teacher, she's not a new face. Besides, she's fun and upbeat, so I'm sure it will be a great year.

There's another familiar face roaming the hallways of Mission High too. Teacher Joe, Maggie's middle school teacher, moved to Mission High this year! What a bonus for all of us. I popped my head in to visit the other day and saw him in the hallway.  He is teaching another special ed class, but there will be lots of interaction with him. The special ed community at Mission is a very tight knit group.

Maggie is still adjusting to the rigors of the school schedule. Even though we were out and about every day in the summer, school is another thing altogether. Maggie is dressed, in her chair and  and ready to go at 7:00AM. The bus comes about 7:15 and she is gone until 3:00PM. She's exhausted when she gets back.

Some of her behavior is less than desirable too. Her home nurse Fely is sporting a nasty bruise on her arm from Maggie's successful pinching and scratching efforts. It's embarrassing. Maggie really does know better, but it's all in how you handle it.  Fely just tells her over and over to stop, which makes it into a game with Maggie. (especially when Fely's voice gets a higher and higher pitch) Everyone else just stops whatever they're doing and walks away. If Maggie is going to scratch me while I'm trying to feed her, I'm going to stop the feed. If she wants the food and the interaction, she has to stop the behavior. This is a more successful approach, but I cannot convince Fely to use it. Even when she tries to use it, she's still telling Maggie how she has to stop. It cracks Maggie up. That's embarrassing too.  In a perfect world these behaviors would not exist, but I don't live in a perfect world  We all have to be on the same page to deal with them, though, or they are going to get worse instead of better.

Maggie is a manipulative little thing. After she upsets Fely and leaves the bruise, Maggie says on her talker "Fely Love Maggie."  Fely melts and Maggie gives her evil little grin.

Hopefully once she's used to the schedule and not so tired, she won't engage in these bahaviors. Hopefully I'll still have a nurse in the house to help me when that day arrives.

Is This the Party to Whom I am Speaking?

The headline in the San Francisco Chronicle  today said “Summer is here, don’t blink. ” Very accurate reporting.  Summer arrived in San Francisco yesterday and it is supposed to last until tomorrow.  It is wonderful to see some blue sky and wear shorts, even if only for a couple of days! The world doesn’t need to see me in shorts any longer than that anyway.

I sported my shorts on an errand to the Hall of Justice yesterday. Tim was having trouble getting his traffic  school certificate accepted electronically, because, it turns out, we forgot to pay the fee that goes with it.  Mom to the rescue. Since I was going anyway, and he was nice enough to give me a ride down there, Steve asked me to get a court date for his recent ticket. (Scofflaws! All of them!)

I  told the guy at the window that I had two separate things to deal with, one for my son and one for my husband. He gave me a quizzical look. I told him they should all try to drive like me, but he didn’t seem interested. As he looked over Steve’s ticket he said, “You can’t do this for your husband. He has to come in himself or have a lawyer represent him.”  “Well,” I responded “I AM a lawyer”. He looked at my something less than professional garb and asked to see my bar card. I gave him a business card, but he didn’t look convinced. I gave him my bar number and I’m not sure if he looked me up or what, but then I was good to go.

Everything fixed, I left the Hall of Justice to find a bus home. I walked about 5 (long) blocks up 6^th Street toward Market St. Anyone familiar with San Francisco knows this is a less than desirable place for a stroll. It is (what was once known as) skid row. I just kept moving and realized when I got to Market St. I had to go further to catch one of the many busses that come into my neighborhood. Now I was well into the Tenderloin. 

If the  6^th street corridor is skid row, the Tenderloin is skid central.

I felt very conspicuous in my shorts and polka dot bag. I didn’t look like a lawyer in the Hall of Justice and I didn’t look like a bum on the corner of Junes and Turk Sts.  I just didn’t fit in anywhere.! I waited for the bus as a clearly mentally ill/drugged out woman SCREAMED at her companion.  It was lovely.

Once on the bus everything was calmer. The crazy lady decided not to board with her friend, which was fine with me. My phone rang . It was Janice, Maggie’s school nurse. She had already called once. Maggie is a bit “off” for lack of a better word. She’s not sick, but something may be brewing. When she called the second time, I became a bit concerned. However, it turned out Maggie just wanted to talk to me.

When Maggie “talks” to me on the phone, she just wants to hear my voice. She generally doesn’t use her talker in return, she just listens and responds using her  signs for “yes” and “no” as though I can see her.  I speak to her in the normal cadence of a conversation, saying something and then waiting for a response. Of course, I hear only silence, but she needs time to process whatever I say. We just “spoke” for a few minutes and then I said put Janice back on the phone.  Much to my surprise, she did. When Janice said hello, I said excitedly , “did she let you know to take the phone?” Janice said, “no, I could hear you. “  I laughed.

Of course there is zero privacy on a public bus and the man next to me was clearly curious about my phone call. I thought to myself, Boy, if he only knew there was no one responding to me, he would have thought I was the crazy woman.

Oh wait….

Stranger and Stranger

Sometimes I have to experience things differently to realize how hardened I've become to things. Case in point, shopping with Tim and Maggie at Costco last week. Tim was shocked at how often people stare at Maggie. I know they do, but I generally ignore it. With Tim there I was acutely aware of the staring from every corner.

The staring is nothing new. It has always been part of Maggie's life, and all of ours by extension. It may be a little worse now than before because the trach tube is jarring to people and Maggie's constant movements of her hands and face is off putting. Tim is just out of practice, He's been away at school for two year. He has certainly been home a fair amount in that time, but it is always a couple of days here and there and isn't too often that we are out in public with Maggie while he's home.  He received a crash course while we were at Costco.

One woman was looking at Maggie like she had two heads and we kept running into her, which was awkward. The best, though was a family that we only encountered once. There were four of them and they were turning into an aisle just as we were going to exit that aisle. All four stared at Maggie open mouthed an blocked our way. It was just a moment where the three of us were facing the four of them, mouths agape. I said sweetly, "excuse us, please" and we went by. As we rounded the corner Tim said (just to me and Maggie), "Hey folks, strap up your chins and get the HELL out of our way. We all cracked up at that.

Lest you think everyone is as boorish as these people were, there was another woman who made our visit.

We paid for the ridiculous amount of items and I stopped at the desk to inquire about getting Tim a card of his own. Tim was next to me holding onto the cart and I was holding onto Maggie's chair, but my back was to her. Maggie was facing away from the counter. By this time Maggie had had ENOUGH of Costco and wanted to get out of there. She kept saying on her talker, "Mom, I want All the Single Ladies Put your hands up" which means, of course, that she wanted to listen to Beyonce.  I absentmindedly answered Maggie while I completed a form for Tim. Maggie repeated her sentence again an again. Out of the corner of my eye I saw a woman approaching Maggie. I turned around and there was a woman just steps away from Maggie waving her hands in the air. She had on a muni bus drivers uniform, which made it even funnier. She said, "I'm a single lady, girl, My hands are UP."    I told her that meant Maggie wanted to listen to her music and she said, "well, get goin, mom"

Maggie was delighted and Tim noted how one cool person can make up for so many idiots.

Hats Off!

One of the many difficulties with dressing Maggie is finding things that will work with her wheelchair. I've mentioned before the difficulty of wearing skirts because of the wheelchair straps at her hips which come up through the legs. It is just not acceptable for a girl to sit like that with a skirt on, even if you didn't go to Catholic school.

Another problem is the headrest on the chair. It is a complicated two part system that does a great job keeping her head in the right position, but wreaks havoc with any hat she might want to wear.  Brims are OUT. The hat gets knocked forward or completely off her head. Baseball hats work for a few minutes, but Maggie's constant movement and rubbing against the headrest makes the hat slowly knock down over her eyes. It's a problem when it's cold or particularly sunny (not a problem this summer). We can't keep her head warm or shade her face from the sun. 

Lately, though., Maggie has found success from a varied collection of hats. They may not be completely practical, but they have been entertaining. 

The easiest fix for the cold, of course is hooded sweatshirts. The hood stays on and keeps her warm. Of course Maggie discovered the string for the hood and has a great time wearing it like this.

 It is a little dangerous when we're driving and she can't get out of it, though.

Undeterred, however, Maggie recently acquired other head wear that stays on her head and she can't get herself into danger wearing either. In fact, she looks quite frightening in both - except for the HUGE smile she's wearing.

This hat was only a loaner. She wore it for a few minutes at the giants game the other Day. I believe this was a giveaway at a giants game earlier in the season. We posted this on facebook and my cousin Dennis said Maggie has to attend all the games and wear this hat because she brings them luck. He may be right. They haven't won since the day she wore it. 

But the best hat of all may be this gift from Nathan T. Nate is the son of some friends and recently traveled to Ireland with an organized group of kids around his age. (14?) He purchased this lovely pink viking hat that says "Ireland" across the front. Maggie is quite the imposing looking marauder, don't you think? When she's wearing this we should really use the full Irish name, Mary Margaret McDonald.

Thanks Nate, Now we can keep her warm, safe, and a little scary. That's perfect. 10th grade is tough. Even for a sweet little Irish lass.

Able Closet

First day of school went great! Maggie was wiped out when she came home and was asleep a little after 7:00PM and didn't wake up until 6 this morning. We both have to adjust to getting back into the crazy morning routine, but we will. 

As we were waiting for the bus this morning I was looking around the basement at all the crap we have in there. Unless you've seen it, it's hard to believe. There is no room for a car in there and there hasn't been for years. In face I have to fight to keep a space wide enough for the wheelchair to get through. 

Steve's workshop takes up about half the space. He has all the big power tools and the supplies, but it's worse than that. He is something of a mad scientist and we have bits of this and boxes of that all over the place. Nothing goes to waste. He saves everything in case he can build something with it later. He can build anything, but he never uses the stuff he's saved. When he's not looking I recycle old yogurt containers. (oh-oh, now I'm busted). There is also a boatload of goodwill stuff down there, at least 10 boxes and that's going out today! Whoo hoo!

In addition to all his stuff, there is all of Maggie's overflow equipment and supplies or unneeded equipment and supplies.  I can't really donate it to goodwill because it is so specialized. For years my friends and I considered opening up some sort of clearinghouse for all this stuff because it's unbelievably expensive and so much of it is sitting unused in basements around town. Of course we never got around to it. But, thanks to a reader named "webkinzlover," I learned that someone is finally doing that in the Bay Area. 

It's called "Able Closet" (http://www.ablecloset.com). Families can donate unused or unneeded equipment to 

Able Closet for a tax deduction. Able Closet then inspects it, cleans it up and lends it out to a family in need. It is a fantastic idea and I will be gathering up some of Maggie's stuff to donate. I contacted them and they are taking donations for all over the Bay Area and storing it in a warehouse. Check out their website - you won't believe the equipment on there. Need a ramp for a step, no problem, Need a lift? a stander? You will find it there. 

I contacted Julie Bursey  DPT, one of the co-founders of Able Closet and she is interested in getting the word out about the organization both for donations and for families in need of borrowing something. They are also building a bank of names and references for those who work with our kids. So all of you parents of disabled kids or therapists reading this, spread the word and check out the website. 

It is a fantastic idea and I will be gathering up some of Maggie's stuff to donate.  As soon as I can dig my way down to it. 

A sight to behold

Maggie's Last Day of Summer

Hello all.

The staycation is at long last over!!! Maggie is going back to school today.

Is there prettier site than a school bus at your front door? I don't think so.

Unlike many kids, Maggie has been excitedly awaiting the arrival of the first day of school. This weekend she repeatedly named her classmates and said "I want to go to school." On Sunday she reminded me that Monday was the first day. I got this video, but we were both laughing too hard to make it quick. (It's just under 2 min.)

Remember, when she touches her mouth she is saying "yes."

I cut it off when she started choking. I mean fun is fun, but enough is enough.

Friday the 13th

Maggie's brother Tim has been home for the past two days. Maggie has been beside herself. She knew he was coming on Tuesday and kept making her talker say "Tim, Nice to see you." This went on for hours before he actually arrived. When he did, she was delighted. They had a ton of fun together at Costco yesterday. Well Maggie did, anyway. She just said "Tim! Tim! Tim! on her talker over and over again. Finally he would lean down next to her and say WHAT?. That cracked her up. She will be sad to see him go, but he has to go back this morning. 

Today is the last weekday before school starts. (cue Halleluia chorus). Maggie and I have to go do something fun for our last outing. We have been on an extended staycation since summer school let out. We have gone someplace every single day since then so that Maggie would have some fun. Ok, I know, Costco is not generally considered fun, but I promise you it was very fun for Maggie. Not sure yet, what we will do today but we will end summer with a bang. . 

Today is the second anniversary of this blog. I started writing in on August 13, 2008. At the time we were losing our nursing care and had to set up a system to do it ourselves - that is to find the nurses etc and then get reimbursed from the state. I thought that was an insurmountable challenge, but now I've been doing it for two years. 

No wonder I'm tired.

Happy Friday the 13th all.

Low Tech Communication

Quick Video post to show Maggie's low tech communication. She has long had signs for "yes" and "no". It's basically up and down. For yes she touches her mouth and for no she puts her hand on her leg (or tray if she's in the wheelchair.) We decided the other ay she needed on for "thankyou" and settled on her putting her hands together. She picks it up immediately.

I took this video as she was settling down for the night. You can hear the night nurse in the background - but mostly you hear me. Maggie always says "no" when I ask if she loves me. Well, almost always. If seh's sick or scared she says yes, but if she's in a good mood she say and emphatic NO and she thinks its very funny

X-Ray Vision

Maggie had to have x-rays taken yesterday. It was time to get updated films to see how bad her scoliosis is. We already know she has some, and it is time to see if the curve in her spine is increasing. This was requested/required by the doctor at California Children’s Services and it makes good sense to have the information.  They requested it at least six months ago and when Maggie went back for her semi-annual checkup last week, they noted they never received it. “Oh,” I said sheepishly, “that’s because I never did it.”  Maggie has so many appointments and requires so many tests that it is hard to gear up and follow through for something done on a prophylactic basis, even if it makes good sense.

I want to be compliant and get the docs what they need, but there are a couple of reasons for lack of motivation and the delay in getting these tests completed.  For one thing, no matter what the x-rays show, Maggie is not a candidate for the scoliosis surgery. It is an amazing surgery and can make a huge difference in a kid’s life, but not Maggie.  She could not handle the surgery; and even if she made it through that, the recovery would be impossible. Another factor in the delay: though not painful, getting x-rays done on Maggie is HARD WORK.

Yesterday was no exception.

I have written about this before. The difficulty is that the technicians have no idea how to accommodate her disabilities.  Therefore, they simply ignore them and pretend everything is fine. Yesterday they told me Maggie was supposed to sit in a chair turned sideways with her back to the x-ray plate. English was not the first language for either of the two women dealing with us. They both spoke English fine, but their choice of phrases was both insistent and inartful.  

The woman in charge said, Oh, I remember you Mom, you very helpful. That good. We need help with this girl.” You tell her to sit over there and stay still. She have to stay very still”

Me: “Did you hear that Maggie?”...  (waits) “Ok, that’s just not going to happen.  She cannot sit in that chair and she cannot stay still.”

X-ray tech: It’s ok, tell her she only have to sit there and stay still for a minute. It will take longer if we do it on the table.

Me: well, she’s right here. She can hear you perfectly fine, and I can tell her anything you want, but that’s not going to make it happen. We have to use the table

Maggie’s cerebral palsy causes motor impairment. She cannot walk or stand at all and cannot even sit up on her own, partly because her trunk is so weak.She falls over immediately and it frightens her terribly.  In addition to that, or perhaps more specifically, she has neurological movement disorders including a combination of dystonia, chorea and athetosis (together known as choreoathetosis).These are three different types of involuntary movements.Suffice it to say Maggie is a girl on the move. Her body is never fully at rest unless she is in a very deep sleep.  She cannot stop moving involuntarily and cannot use her motor functions in any meaningful way.*

None of this had any effect on this tech who has worked with her before.

Tech: "No you can hold her up, just one side and you tell her to keep her legs just like this." (what she was describing was completely impossible)

Me:” I cannot hold her up, hold her in position, keep her legs the way you want them, keep the lead aprons on her and me and not be in the picture.  And I don’t think anyone is interested in my bones.”

Tech: Ignoring everything I said, “you tell her stay still.’  

Me: “Maggie, stay still.”  Maggie laughs uncontrollably and waves her arms around like crazy. I looked back at them “That is impossible. If one of you wants to try it, that's fine with me, but I am not willing to do that. (they didn't because they didn't want to be exposed to the radiation - I, however, did not get a choice.) Finally I said, "whatever time we would have saved has been wasted by this conversation.”

We used the table and no less than 6 times, the woman said how much easier it would have been in the chair. I ignored her five times. On the 6^th one I said, impatiently – “forget the chair, the chair is impossible for her, that ship has sailed, let’s just finish this.” She still said it three more times. 

When the last picture was taken I put Maggie back in the chair. Only when she was completely strapped in did they realize the last picture did not get the tailbone and they had to do it again. I told them “Maggie doesn’t have a tail bone” (which is true). They looked at each other as though they were trying to translate what I said. “Honestly, you can retake the picture, but you will not find a tailbone.” 

 The woman then said in perfect English, “then we REALLY need to get a picture.”

 I smiled. Of course they were right, but it was fun to shake them out of their comfort zone a little bit. And it was fascinating how the English improved. The whole chair/table debate was O V E R.  

*The fact that she is so good at using her talker is amazing and credit goes to her team of teachers and therapists who figured out how to harness this movement and impairment in a way that works for her.  

  

  

A Game of Inches

Welcome to those of you here from the Disability Blog Carnival!

I have often written about strangers and the things they say or do when they encounter Maggie in her wheelchair.  Often those encounters are strange, but sometimes they  are quite pleasant.  The other day a woman watched as I loaded Maggie and her wheelchair into the van and she said, “Wow, she is a lucky girl.” I smiled. That’s not something I hear very often.  The woman was referring to Maggies’ ability to be out in the community thanks to the adapted van. And she was right, Maggie and I are both lucky to have it. It’s good to be reminded of that sometimes.

 It was funny, though, because as this woman marveled at the automatic ramp starting to lower itself, I was swearing under my breath. Someone had parked partially obstructing the wheelchair area next to the handicapped zone and I knew there wasn’t going to be enough room to load Maggie without moving the car.  It was only a matter of inches, but it makes all the difference in the world.

The ramp on Maggie’s van is 52inches long. The chair, with Maggie in it is another twenty four inches. There 

needs to be enough room to lower the ramp and then clear the chair off  the end of it.  That means we need a minimum of 76 inches, or 6’4” of space to get in and out of the van.  If someone parks  even a few inches into that space I cannot get her out. If it’s close, I can get her all the way to the end of the ramp and pick up her chair and lift it  just an inch or two over the lip at the end of the ramp.  Maggie is little, but with the chair and the equipment this is  about 200 lbs. Since my shoulder injury and subsequent surgery, I decided this is not a smart thing to do.

An additional 6 ft is space is hard to come by in San Francisco.  It seems every inch of this city has something on it. When parking at the curb, we have to make certain there isn’t a tree, a pole or a newspaper rack blocking the ramp. (see picture).There is nothing more exciting than finding a great parking place  and nothing more deflating than realizing it won’t work because you can’t get the lift open.

 Sometimes there is plenty of room, but some unseen and very small obstruction interferes with the proper operation of the ramp. Bricks and sidewalk breaks are the biggest issues. The ramp gets stuck on the edge of a brick and fails to open completely as in the second picture.  My husband was marveling at the damage to the front of my leather shoes. He couldn’t figure out what I was doing until he saw my remedy for fixing the ramp when its stuck on something. Rather than bend over and lift the heavy ramp, I simply put my foot under the ramp where it’s stuck on the bricks or cement and flip it open over the tiny obstruction. Wreaks havoc with the shoes, but saves the shoulder.  

Though she doesn’t have independence,(and I sincerely wish she did)  Maggie is luckier than many others who require the use of an adapted vehicle because she has someone to deal with things like this. I can hop in and back up the van a few feet, or kick the ramp loose from the bricks. A more independent wheelchair user could not do that.  If, for example,  someone is able enough to drive their own van, they have to be able to get in and out of it. If s/he can’t get into the car that small infraction or obstruction can be insurmountable.

A couple of inches can make the difference between total independence and total exclusion.   

Half Awake

I awoke this morning to a ringing phone. Is there anything that gets your adrenaline going faster than that? I didn't panic, though, because Steve is in Yosemite and he said he was going to call before they started up Half Dome. There wasn't anyone on the other end of the phone, but reception is unpredictable so I didn't worry.

I put my head down and the phone rang again. I picked it up and heard the nurse's voice. I glanced at the clock at the same moment and realized I forgot to turn on the alarm last night. It was after 7 and she needed to go home. Her ride was outside waiting for her. I leaped out of bed and was downstairs in a flash all apologies. This woman works with Maggie all night while I snooze upstairs. She shouldn't have to wake me to get to go home.

In the ten or twelve years we have had night nurses for Maggie I think this is the second time I've overslept.  (and it was only 7:10).  Even on days I forget to set the alarm, I wake up naturally. Seven days a week, 365 days a year I am up by 6:30. Sometimes earlier. Not sure why this didn't happen this morning. Perhaps because Steve isn't here. Make no mistake, he doesn't get up at 6:30, I do; but he is always here. My routine was altered because he is gone.

That's it. I'm blaming Steve.

He never did call this morning but they were scheduled to be on the Half Dome trail by 6:00AM. (He is with his Marie and Cliff, his sister and brother in law). It's a 17 mile hike with 4800 ft elevation change. They should finish around 4:00. As you're trudging through your Monday, think of that.

Here's a shot of Half Dome from the famous Ansel Adams collection (www.anseladams.com)

Update: Steve called me from the top a little before noon. They started at 6:45 AM.  It's all down hill from here!

Beauty Day

Maggie got a haircut today. We made an appointment, got in the car and went to North Beach to get it done. This is a departure for Maggie. Generally one of her nurses cuts Maggie's hair while she sleeps. That works remarkably well but every once in a while we have to go get it "done".

I called my friend Lisa who cuts my hair. She was surprised to hear from me because I was just there last week. I asked if she would consider cutting Maggie's hair. With her beautiful thick Italiam accent she said I would LOVE to cut Maggie's hair. You bring her to me."  Today was the day.

I asked Maggie if she was ready to get a haircut and she was excited. She kept grabbing at her hair all morning. I'm not sure if she was saying "take this away" or "I'm gong to miss this hair"

Maggie thoroughly enjoyed getting her hair cut - but the blow dryer Lisa used to clean off the hair all over Maggie was a bit much for her. I put a cover on her trach to prevent any errant hair from getting in there. When Lisa was finished she asked Maggie if she wanted it shorter. maggies signed yes and Lisa started to laugh and said. "Ok, Bella, we will make it shorter"

Now Maggie has a new pixie cut for her return to school

Next stop, mani/pedis

Tuesday Night Group

When I had the boys, I had so many places I could turn for parenting questions. I could ask my mom, or Steve’s mom, or my sisters or my friends about various infant issues.  Even though my two sons were very different babies, they were both in the realm of the “typically developing” child. Therefore, I could always find someone who would say “yes” to the question, “did your baby do THIS?”  

That was not true with many of Maggie’s issues. When Maggie was a baby, I was desperately trying to find my footing, trying to find answers to questions about raising a child like Maggie.  My mother raised seven kids, but she did not know anything about gastrostomy tubes or colostomies. (Go figure) I had to find other places to ask those types of questions.  Of course, many of the questions were medical, and I have always had wonderful support from doctors and nurses and especially from her pediatrician Eileen Aicardi; but a mom needs someone to brag to and commiserate with about the successes and setbacks of parenting a baby.

In order to find that support I had to go outside of what you might call your “natural support” system. I had to find other parents in similar situations. I could celebrate the day Maggie raised her hand to her face for the first time, even if she was eight months later than her typically developing peers. I started going to the “Tuesday night Group,” which was a support group hosted by Support for Families, a nonprofit organization in which I used to be very active.  I heard about it long before I went because I was sure it was not for me. Various therapists working with Maggie were encouraging me to go and connect with other parents, but I thought I had all the answers.  I finally went, with some hesitation, mainly just so I could tell them I did and get them off my back.

That group became my refuge. We would spend two hours every Tuesday night sharing our stories and the successes or failures of our children that particular week. More Tuesday nights than not were spent laughing at the foibles of the system and the frustrations of trying to adapt a complicated set of services to meet the needs of even more complicated children.  There were plenty of times there were tears too as we shared the constant crush of bad news. The parents in that group, mostly moms, bonded and became friends. We could turn to each other about issues with wheelchairs, medical supply companies, special ed and doctors. Best of all, we could brag about our kids to an audience that listened enthusiastically and celebrated every tiny victory.

Helen Rossini moderated that group with ease and grace and brought out the best in all of us. I went  for a couple of years and met some people there who have been my friends ever since. There was a core group of about eight or nine of us with kids around the same age. We started going out to dinner when we outgrew the Tuesday night group.  The dinners waned a bit over the years, perhaps one or two of us getting together here and there.  However, we always caught up with one another. The group endured.  A couple of the kids have passed away over the years, but those moms are still part of our group. One mom moved away, but she is as much a part as ever.

 Six of us got together for dinner this week for the first time in about three years. Appropriately enough, it was on a Tuesday night.  It was as if no time had passed. These women helped me in a way that no one else could have at a time when I needed it most. And I helped them right back.  It just so happens that the women in this picture all have daughters with special needs, but I only realized that when someone said it the other night. It was not the “girls” that brought us together, it was their status as “special” and that applies equally to boys and girls. In fact, one of the missing members of our group has a son and he was always at the center of our stories.  Hopefully, she can come to the next dinner. Hopefully it will not take us three years to get around to it.

So thanks, ladies.  I would not be where I am today without all of you and those missing from the picture. You know who you are. 

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.

Maggie's Request Line is Open

I posted the other day about Maggie making song requests. She has two song lyrics programmed into her computer. One is "All the single ladies put you hands up" which is Beyonce's Single ladies and the other is "I want to hold them like they do in Texas, Please" - which is Poker Face by Lady Gaga.

This morning she was not pleased with the music that was playing and kept slamming her hand down - which means NO! - and then started making her request. I got the camera to record it and she slowed waaay down because she thought the camera was funny. I did manage to capture her request and this short video (3 min) will give you a good idea how she works her talker. It's a bit tough to hear in the beginning because the music is on. You will note how pleased she is to get what she wants.