The Great $tate of California

Tonight our recycled Governor Jerry Brown will deliver his State of the State address for California. I like Jerry Brown and I hope he can return this great state to its prior glory. But I need to give Governor Brown a few last minute pointers before the big speech.

Californians understand there will be more cuts. Pundits indicate most people are in favor of those cuts. I suggest, however, that both the pontificating pundits and the plurality of people will not be as adversely effected by the anticipated cuts as the disabled citizens of California.

Governor Brown, we already know: it's a mess. We all hope you can do something to fix it and all Californians know that we will have to tighten our collective belts and do more with less. I just ask you to remember those who are unable to tighten their own belts because of physical, mental or intellectual disabilities.

Those who cannot do for themselves need people to help them. They need services and care and places to live and food to eat. they need access to medical care and doctors who will accept them as patients. Those who cannot do for themselves will feel the cuts so much more profoundly than their fellow Californians. This is true not only because they need the services more, but also because the services are not providing anything more than basic human needs.

Most Californians will pay more in bridge tolls and gasoline tax as they drive themselves to work, but they won't be left behind.  They will suffer the closure of State Parks and endure longer lines at the DMV. College students will go further into debt as they prepare for a future that is pushed a little farther back because they cannot get the classes they need. None of these are acceptable, but we understand many are necessary. It is a high price to pay to fix things, but most stand at the ready, prepared to do their part.

The disabled citizens of California will suffer those same issues and so much more. Some will be left homeless or be forced into institutions, others will die for lack of care and services. That price it too high.

I ask, then, Governor Brown, that you consider very strongly the cuts that are terribly inconvenient for everyone and differentiate them from the cuts that can ruin or kill a select group of the citizenry.The disabled are for the most part, unable to turn anywhere else for assistance. They will be the responsibility of the State of California in one form or another. Consider the big picture, what state costs are being saved and what are being increased. Institutional care comes at a very high price and that price will be borne by the State.  Protect the basic services that the disabled rely on to survive.

Vote with your Wheels

Maggie decided we should go to the mall today. She would not entertain any other options. The museum? NO! Target? NO! walk in the park NO NO NO! She is a mall rat. It's an age appropriate activity, even if you have to go with your old mom.

We bought some fantastic baby girl clothes for our friend's new baby, which is always fun. It's so easy to pick things out, it's just hard to stop because all of it is so cute! Once that was done I said, let's go get a card so we can wrap this up when we get home and have it all ready to give to the new mama. We went into Papyrus, which is a fancy card store. It's a tad overpriced, but it was right there.

We entered the store and one of the workers was making her way out with three large boxes on a dolly. I pushed Maggie into a side aisle so she could pass. We were cornered because I could not negotiate the tight turn. When she was done I carefully backed Maggie out to the main aisle again. The clerk told me the new baby cards were toward the back on the right. Ok. We started back. A woman was perusing cards and her stroller was blocking my path. I said, "excuse me, please."She looked up and quickly moved the stroller so we could pass.

There was a sharp right turn to navigate with displays on either side. I evaluated how to manage that. Once back to the section I needed I would not be able to reach the cards because Maggie would be blocking the way. I considered my options for a moment and then just stopped.

Why am I shopping in a store that cannot accomodate Maggie's wheelchair?  Why would I spend money on an overpriced card when this establishment makes it so difficult to bring my daughter into her store?

I said to the woman, this just isn't going to work and I started backing out. She said, very nicely, "I will be happy to hand you anything you are interested in."  I pictured myself gesturing and saying "That one, no up, ..to the right. Yes! That one."  Of course I would probably have to do that several times to get something I wanted. I just said nicely, "nope, it's just not going to work."  The woman was very nice. She offered accomodations, but the bottom line is that I could not shop the way I wanted because I had a wheelchair user with me. That just doesn't work for me.

I hope she took note. I hope other people in wheelchairs and their families don't shop at stores that don't have room for wheelchairs. Getting inside the store is not access, you have to be able to shop. Strollers and dollies have to get around too, so it's not just wheelchair users - or their mothers -  who would benefit.

There are a few individuals in wheelchairs who make a living setting up businesses for claims. I hate that. The professional litigant in the wheelchair is giving other wheelchair users a bad rap.  Those people are taking advantage of the laws to further their own interests and they are causing unnecessary grief for the small business owners. Neighborhood Businesses are closing because of this activity. I do not condone this in the least and have no intention of filing any type of complaint.

But I don't have to shop there either. We rolled out, voting with our wheels.

Willing to Watch

Due to her visual impairment, or perhaps her higher intelligence, Maggie does not watch television.  If we are watching television she will use her talker to say “I don’t like tv” over and over again. Sometimes we turn it off and sometime we say,   “Too bad, we do.” She finds that hilarious.

Maggie’s visual impairment makes it difficult to process the movement of the images on a screen. She can see it but she cannot keep up with the changing images.  She will simply turn her head away.  There are certain camera angles and tricks that bug me, rapid fire image changes or the panoramic shots moving 360 degrees around an object that stays in the center.  I always look away from that type of thing. I’m not sure if it’s right, but I imagine every image on the screen creates that feeling in Maggie.

When we are watching television, I position Maggie so that she is not facing the screen.  She is either at right angles to the screen or has her back to it. She can hear the television and spend time with us without being visually assaulted.  It isn’t perfect, but it seems to work.

The other night we were watching an old episode of Glee. It featured the music of Lady Gaga. As you may know, Lady Gaga is one of Maggie’s favorites. She was sitting with the screen almost directly behind her when the Glee kids started singing “Bad Romance.”  The first chords of the song make her stop and sit up very straight. I motioned for Steve to watch Maggie. When the song started she was trying with all her might to turn her head around.

We laughed and put her right in front of the screen. She was going wild with excitement. I got some of it on video.

I guess Maggie is willing to sacrifice for the arts.  

Fashion Package

When I picked up the mail the other day there was a large bright green envelope addressed to Maggie. I noticed the return address was that of Joan P., an old friend of my parents. I admit, I was curious, but I had to wait for Maggie's bus to arrive so she could open it. After all, it's not like Maggie gets mail every day. (Well, actually she does, but it's never anything fun, just insurance statements, medical bills and notifications about services.) I knew the bright envelope would entertain her no matter what the contents.

When she arrived Maggie was delighted to have the envelope on her tray. She pulled and yanked. Finally I helped her open it and she pulled out a soft inner package in wrapping paper along with a note. I read Maggie the note as she ripped the wrapping paper to shreds. Joan said in her note that she admired how Maggie always had a scarf that matched her outfit and sent her 5 more in various colors. 

Maggie has a ton of scarves, but she needs them. She sometimes goes through 10 or more in a day.  They serve various functions. They cover the trach from prying eyes, the catch secretions and they look good. We try to emphasize the last function. 

The five new scarves were still on the table on Saturday when Steve and Maggie and I went for a walk in Golden Gate Park. In an amazing coincidence, we ran into Joan P, and I think that's the first time that has ever happened. Of course I've seen her at events and things numerous times over the years, but I have never crossed paths accidentally. She knows all about Maggie from this blog and gets news from my mom, but she had never met Maggie first hand.  Funny how the universe works  Maggie started out a bit shy, but she gave Joan a big laugh and wave when she heard it was the lady who sent the scarves. 

Yesterday Maggie wore the cool black and pink one and I don't mind telling you she looked HOT

(Note Maggie flashing the peace sign to match the peace sign on her sweatshirt. That is purely coincidental. Maggie cannot generally isolate the movement of her fingers like that.)  The only thing that was deliberate was matching the hot pink outline of the scarf with her hot pink shirt (not visible) and the sweatshirt.

Thanks, Joan for your thoughtfulness and your contribution to the Maggie fashion fandango! The bright green envelope was also great.

Small Things

Steve and I stole away on Friday night for a quick bite. We don't go out very often and we always have a great time. I really needed to get out of this house but didn't have the drive to come up with any thing. I jumped at Steve's suggestion that we go out to dinner.

We went to a little Mexican place we like. It's always crowded and very ALIVE. Every inch of that small restaurant is decorated with brightly colored paint, pictures or other things. You can't stay down in the dumps for long if you eat there. Here's Steve posing by the beers and you can see some of the decor in the background.

In addition to the decorations on the walls, every chair has a name painted on the back. The names are random, there will be Jordan or Ann next to a Julio or Mike. It's just another part of the energy of the place.

I signed in for us and we waited about 20 minutes for a table, wandering into a nearby bookstore for a few minutes. We came back just a minute before they guy said "Sally, for 2" I said "right here." He held out my chair and I had to point this out to him (see picture). He smiled and said I'd love to tell you that was on purpose, but we are a little busy to match the chairs with the customers.

My phone rang during dinner. I always keep it on the table in case the nurse calls about Maggie. It wasn't the nurse, but a number I didn't recognize. I don't know why I answered it, but I did. The woman on the other end said "Sally?" I (checked the chair and) said YES?
This is Anna Romo.

Anna Romo is the lady who was so nice to Maggie and gave her the bread the other day. (see two posts from earlier this week) She received Maggie's thank you note and the note I enclosed with a copy of the post and a business type card.

I motioned to Steve and ran outside where I could hear her and she very sweetly thanked me for the note and told me how Maggie is a blessing in our life.  She invited us to visit her at Boudin Bakery again, and I promised to do so.

I came back to the table and told my confused husband that it was Anna Romo. (It was Steve's idea that Maggie write the note). I said, she got Maggie's note and was very happy about it. We smiled at each other and Steve said simply "Small Things."

What he meant by that was what a difference small things makes in someones life. Anna showed a small kindness to Maggie, Maggie sent a small note of thanks,  Anna made a phone call to thank us for that and to invite us to visit again. Three small things that add up to a lot.  And my chair had my name on it!

Everyone feels good. Everyone wins.

Remember the small things. They really do matter.

 

Fish Face

Maggie and her classmates had an art project making fish prints. I haven't seen the results yet, but the picture the teacher took of the process is hilarious. All Maggie had to say was that the fish was stinky. It looks like a stare down

A moving farewell

I cancelled the bus Thursday because Maggie had  an appointment at 2:30 and we would be late if she took the bus. That appointment was subsequently cancelled, but too late to get the bus back. So I drover her to school and picked her up. 

I arrived at school around 2:10, a bit before dismissal. There were some kids leaving and others milling in the hallways, just like we all remember the end of a high school day. When we were leaving I found myself in the midst of a group of about 6 guys who looked quite cool. As they separated, some going downstairs, some out the door etc, they were saying their good byes.

In MY day it might have been "See ya later" or just "later" then it was "Be cool: or the ever popular head nod. 

In parting one of these cool guys said to the other - "Stay Regular""

"STAY REGULAR?" That's "good bye?"

I will say that at my age that means something very different. 

New Arrival

A  baby girl was born last night. I don't know her name yet, but she entered the world a few weeks early. 

There was quite a scare in the past few days. The young mom was told there was a liklihood that the baby was not getting enough oxygen. This is obviously extremely bad news. Mom knows better than anyone the dangers of that. Her first child is had extreme disabilities and health problems, many of them from a similar issue. She is an excellent mom and takes care of her son with love and devotion. But again? It just wasn't fair.

Mom was scheduled for some emergent tests yesterday because of this. I wanted to call and ask about the tests but I didn't want to intrude.  Apparently after the tests the doctors decided it was time for this baby to join the world. 

I received a text last night from mom's sister that said :"baby born today. She's big and HEALTHY!"

I just started to cry. 

A Note of Thanks

We thought it was only right that Maggie should write a thank you note for the kindness shown to her by the lady at Boudin Bakery. I wanted it to be from Maggie, not from me. She's 16 years old and can do this on her own. We don't have the software at home to translate things she says on her talker to print, so I asked her teacher if Maggie could do it at school. She wrote it yesterday and they decorated it with glitter and sent it home today after it dried.

I had to scan the typed message inside the card. There is no question that Maggie wrote it.

I'm delivering it this afternoon.

Two Turtle Loaves

About an hour after posting about being a local, we took Maggie on one of her favorite outings. We played tourist and walked through Fisherman’s Wharf. It’s a great outing for Maggie. There is a ton of activity with the people, the boats, the birds and the sights. We can just wander about for an hour or so and then come home.

Whenever we go, we always stop at the Boudin Bakery. It is a two story working sourdough bread bakery and its all visible to passers by. You can watch the bakers make sourdough bread through the picture window while baskets of fresh bread pass by over their heads. The fresh bread moves slowly  on an elaborate conveyer belt system from the the racks where it is cooled to the shop where people line up to buy it and lots of other good food and kitchen supplies. It is living theatre and you can eat the results.

Here's a shot of the baker working in the picture window taken from upstairs looking down. You can see the folks watching her. The baskets of bread go by on the track system at the top of the picture. 

The baker working in the window is often making bread in the shape of various animals including Dungeness crab, alligators, turtles and the like. Saturday was no exception. The woman was shaping together pieces of dough to create sourdough turtles. 

It was only ten AM, which is earlier than most tourists bother with Fisherman’s Wharf, so we were the only ones at the picture window. The baker waved at Maggie and then motioned for us to come around to the door. We did that. She came outside, introduced herself as Anna Romo, and presented Maggie with a gift of two small turtle loaves, which are pictured above..

 Maggie was surprised and didn’t really react at first. Anna the baker asked where we were from and seemed surprised that we were locals.  I told her we love coming down here because of the excellent energy. She smiled. Maggie then decided it was time to wave and smile at her too, which made  Anna happy. Maggie was very proud of her turtle bread and held the bag herself for a while.

Anna has probably done this for other children as well because her manner was so comfortable and kind. It may be part of her job to occasionally make gifts like this.  Maybe not, I really don’t know. All I know is that she did it for Maggie.  So often people overlook or ignore Maggie, because she makes them uncomfortable and it’s easier to pretend she’s not there.  When someone singles Maggie out to do something nice for her, it warms my heart and it makes up for 100 times she was ignored.  It is a small thing but it is an incredibly nice thing.

Anna Romo, baker at Boudin Bakery did that. Her one act of kindness and generosity erased so many annoying things that Maggie has to put up with. Anna is a great ambassador for all the visitors to Fisherman's Wharf. 

Even the Locals.  

 

We tried to get a shot of Maggie and Anna together. The sun and glare from the window  kind of washes Maggie out, but I wanted to get Anna at work.

Local Yokels

San Francisco draws people from all over the world.  Most people who live here came here from somewhere else.  Those transplants are always amazed when they meet a native San Franciscan.  But there are quite a few of us around.

  I am a San Francisco native. I live four miles from my parents house where I grew up.   I haven’t gone very far. It doesn’t seem strange to me because I know so many people who are also natives and still live in the area.  One benefit of staying in the same small geographic area is the ability to stay in touch with friends and acquaintances from so many different parts of your life. For some that might be a nightmare, but I love it.  San Francisco is not a very big city and those that stay tend to see each other over and over again.

My friend Lori, who grew up in Los Angeles, is always amazed at the number of people I know . It has become something of a game to see if I will run into somebody I know when we are out. I always do. I can’t help it, I know a lot of people.   

I grew up here. I am one of seven children. I have 31 cousins, 25 of whom also grew up in San Francisco.  I attended Catholic schools where many families were the same size. That is a wide net right there.  It’s not just my old friends I see, but their siblings or friends of my own siblings.   I worked downtown before I went to law school and made friends at that time. I returned from law school and joined the legal community. I have many friends from that part of my life. I married Steve and inherited all his friends from growing up and from college.  I raised my kids here, sending the boys to the same Catholic school system I attended. I met many friends this way. When Maggie was born, I met an entirely new set of people in the world of disabled children and healthcare, several of whom I count as very close friends.  We have lived in this house for 24 years and know many people in the neighborhood as well. Now friends of my sons are out in the working world and I run into them as well.  

There is some overlap in the different groups, but not too much. For the most part the groups are distinct. That is not purposeful, just the way it works out.  Admittedly, most of these folks fall into acquaintance rather than real friend category, but there is almost a guarantee I will run into someone I know.  It used to drive the boys crazy, but now it is happening to them as well.

A lot of those acquaintances really are good friends too. They have stood by and with us since Maggie was born. Some faded away because it was too much to handle, but most have been there throughout asking what they could do to help. I don’t say it often enough, but I am so very grateful to everyone in my life who is willing to provide the support we need. It keeps us going.  

Weeks go by and we don’t get to see any one. Then there are weeks like this one in which  I have spent time with friends from several of these groups.  We laughed with friends from Steve’s high school and college days, my high school, raising the boys and my days of practicing law.  Spending time with each allows me to focus on different parts of my life. I may not have wandered very far, but I certainly have a multi faceted life.

It’s good to remember that .  In the last few years my entire life has been completely focused on Maggie’s care, which it needs to be. It can be very isolating.  But I am never alone. I draw strength and love from all these amazing people in my life.  

Energy Crises

I have tremendous respect for pneumonia. The illness manifests in many different ways, but it always kicks your butt.   Maggie is recovering from her latest bout with this bug now and she is doing fine. Until she isn’t. It just sort of sneaks up on her and saps her energy. She will be mid sentence  with  her talker and suddenly fall sound asleep.

 Pneumonia ordinarily means  horrible coughing and a high fever.  In her countless past episodes of pneumonia, I’ve certainly seen both more than once.  She has neither this time around. Her chronic cough is a little worse than usual, but not terrible.  Her usually low temp is more in the normal range, but nothing I would call a fever.  This time it is all issues related to energy and stamina.

Maggie was exhausted for a week before I took her to the doctor on Monday. I assumed she was adjusting back to a full school day after two weeks of Christmas vacation. By last weekend she was needing a little oxygen during the day, which is unusual. That little bit would reenergize her for  several hours.  I sent her to school Monday warning the nurse that something was off.  After a couple of hours the nurse called to tell me that she needed oxygen constantly or her oxygen levels would drop.

That was my tipping point. If she needs that much help it had to be a pneumonia. It was time for the doctor.

Now we are on day 5 of antibiotics and Maggie is much better. I tried to send her to school yesterday but she didn’t last more than a couple of hours.  She’s a wee bit stronger today, though and she went back to school this morning. She has already lasted longer than she did yesterday. Now theres a  three day weekend, so she should be in good fighting shape by Tuesday.

Then we’ll get back to the wind sprints.  

Frugal Pioneer

I know there are many who feel the cost of caring for the disabled is too high. Most of those are too polite to tell me their position, but there are always a few who let me know. Fortunately I'm (usually) too polite to tell them what I think of them.

So it all works out

I have to admit I had some hesitation about talking to a reporter doing a story on the financial aspects of raising a child like Maggie. When Rob Reuteman, the author of the piece contacted me I asked him specifically if this was going to be a "these kids aren't worth the money" piece. If it was, I didn't want to be part of it. He quickly assured me that was not the case and I found his story to be realistic without being alarmist. (check out the story here)
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As we march into the abyss of inevitable budget cuts in California, I will not justify the government's support of Maggie and her peers. It is the responsibility of a decent government to care for its most vulnerable citizens. Besides, I know two things to be true: 1)We are saving the state a ton of money and 2) Maggie is a pioneer and deserves the government support.

The care Maggie is getting here, though costly, is far far far less expensive than it would be if she were living in a facility. She would have all the same costs PLUS lodging. Also, we can deal with things like her current pneumonia at home instead of in the hospital. One week in the hospital is about two months worth of in home care. In all of last year Maggie spent three days in the hospital, compared to weeks and weeks in other years. It is not that Maggie is healthier than in previous years, because she is not. It is because we can catch things early before they get out of hand and because the doctors know she will be well cared for at home and the we have everything we need.

Maggie is absolutely a pioneer and she benefits from the pioneers who came before her. The American government has always supported pioneers. We're not looking for a land grant, just the ability to live the life the medical advances saved. Medical technology and practice is improving every day. Medical advances are much faster than the social infrastructure. They can save people, but society doesn't have ability properly care for them. Society fumbles along to create the services that weren't there. By the time they are in place there is another level of care necessary. Maggie is in that "next level."  But she's not the last. I have my daughter today because a mother a generation lost her daughters and the medical world figured out how to change that. Maggie is living the life she is so that a little girl a generation form now won't have to because medical advances will continue.

There is no question that caring for Maggie and others is expensive. Is it worth it? Yes, I think so but admittedly I'm biased. She's my daughter.

 Let me ask you this. Is your daughter worth it?

Dr. Mom

Maggie is sick. At 8:00 AM I called the doctor to report symptoms of Maggie's and thought she had pneumonia. she was doing all right and I sent her to school, but something was "off". I had to go get her because the school nurse had to keep giving her oxygen. She wasn't terribly ill, but this is not normal.

I called urgent care and waited 30 minuted for someone to answer the phone (do they understand the definition of "URGENT?")  They gave me an appointment and then called back and instructed me to go straight to the ER. I silently groaned. Maggie wasn't really sick enough for the ER, it would take longer and we would be taking up apace that someone else could use. On the way up there my call to the pulmonology nurse was returned. I told her we were on our way. 

While we were in there Maggie kept telling me on her talker that she wanted to go home. her sentence was"Mom, I want to go in car. Home" I said Sorry, Mag, we have to wait. Finally the resident came in. He was a handsome young guy who was very sweet to Maggie. He ordered a chest xray and left the room quickly grabbing Maggie's hand to say good bye.

Maggie paused, cleared her talker and made the following sentence, "Mom, I am sick".

I laughed at her and said, you just want to hang out with the cute doctor, don't you. she signed "yes" and laughed so hard she started coughing like crazy.

After 3 hours, they decided Maggie does indeed have pneumonia.  I ran into someone in the elevator back to the car and told him the story. He said, Dr. Mom is always right. As I left the elevator full of doctors I said, "My life would be so much easier if they would just give me a license."

I'm off to the pharmacy to get two more prescriptions.

_________________
in other news (literally) I was contacted by a reporter named Rob Reuteman recently. He was doing a story on the financial implications of raising a seriously ill child. Maggie and I became the example family. For someone who never met Maggie, he really managed to "get" her and the situation. Check out the article here http://www.foxbusiness.com/personal-finance/2011/01/10/newborn-unexpectedly-unwell/

Up the Down Staircase

I live a horizontal life in a vertical house. I need to move things around easily, store a ton of supplies for Maggie, and maneuver her wheelchair, yet I live in a house that’s 25 ft wide and three stories high. That means a lot of stairs and a lot of up and down.

 Brisco the wonder dog  and I have had quite a morning on the stairs. This dog loves to follow me up and down the stairs just in case there is a chance I will grab a leash and open the front door. You can almost hear him ohboy  ohboy ohboy ohboy. He has to follow because he is depending on his vision more and more. He can’t hear me call him when it really is time to go out. It seems Brisco’s hearing has really faded to almost nothing.

I have been up and down the stairs a lot today. There are several rugby players from the University of Nevada staying here this weekend so they can attend the Kraft Fight Hunger Bowl on Sunday. (Nevada v Boston College) We have a futon and floor space in the laundry room downstairs, but I have to get all the laundry done so a couple of guys can use that room. Every load is a trip down the stairs and Brisco follows expectantly.

In addition, Maggie's new mattress arrived and I had to get the other mattress back upstairs.I'm the only one home but I figured I could move a single bed mattress.  It was more difficult that I anticipated.; it took several tries as the staircase is rather steep. I could get it as far up as the bend on the staircase, but it would slide back down as I tried to navigate the bend. I kept stepping out of my shoes as I pushed and pulled. It did not help that Brisco was walking between the mattress and the wall pushing the mattress against me so that he could stay as close as possible.  (It’s up there now because I refused to fail.)

The best, though, was the attempt to put away Maggie’s supplies. The diapers, “chucks” (underpads for changing) catheters etc arrived in three huge boxes as they do every month. They just leave them on the front porch. I wish they would leave them in the driveway so I could eliminate some of the work of putting them away. I have to store these in the basement because there isn’t any other room. The boxes are too big to carry so I have to unload them a little at a time and bring the stuff downstairs. There are 16 packages of diapers (12 in a pack)  and 8 packages of chucks (12 in a pack) to bring down. (note this is not enough to last her the entire month, I have to buy an extra case of each.  Don’t be jealous) They’re not heavy, but bulky and I cannot carry too many at once, but I always try anyway.

I start down the stairs with some of the chucks, which for some reason are packaged in plastic bags that are open on one end. They will slide out if you pick them up from the wrong end.  Brisco waits for me to start down the stairs and then has to race me. You can imagine what happened. He brushed me as I was trying to balance too many packages at once and everything went kaplooie. I teetered but did not fall; I did, however drop the packages and there were orange chucks everywhere.  I was afraid to take a step for fear I would slip on the slick plastic so I just backed up the basement steps, went out the front door, down the front steps and into the basement form the front so I could clean up the mess safely.Here they are all stored on two shelves in the basement.

Brisco was beside himself when I went out the front door thinking for sure it was walk time. He looked at the hook where the leases are and looked back at me as if to say “WHAAAAT?” I had to laugh.

 Maybe it’s time we both went for a walk. 

Goldilocks and the three beds

We are about to give Maggie her second new mattress in three days. That's painful when the Christmas bills are still rolling in. So much for that spending freeze we were going to go on.

As I mentioned the other day, I am on a tear to get rid of things in this house. I want to get my office out of the dining room and into one of the bedrooms upstairs. The dining room will look better and I can hide my mess upstairs.  It's hard for me to get any work done when the nurse are with Maggie. When they need my help I can run downstairs. On the other hand when I'm on my own with Maggie I can just bring the laptop down, I don't need all the supplies and machines around me all the time.

Before I can do that, though, we need to clean out as much stuff as possible from that back room. We do need to have a bed in there still, but we are going to make it a full instead of a single - or at least we were. That's out now. The single bed in there has a fantastic mattress. Maggie's mattress is terrible and old and should have been tossed years ago. Ironic, isn't it. NO one sleeps in the bed upstairs and Maggie probably spends 2/3 of her life in or at least on the bed.  Out with the old one and bring the good one down to Maggie's room.

Turns out the good one is too good. It has a pillow top on it and it is too high to be safe for Maggie. Maggie's bed was custom made by Steve. It is a large box set about four feet up off the ground.  The side rails are the key to keeping this constantly moving child in place.

There is still a little bit of room between the top of the mattress and the rails, but when she gets going she could easily fall out. It has to go back upstairs. Here's a comparison of the old and the new. Look at the openings on the rail. There is at least four or five inches of difference. When shes on top of the new mattress she is right at the rail. You can see in the old mattress pictures how she hangs her legs over the edge. No question she could flip herself right out and it's a long way to the floor from there.

old

new - and being replaced

The old one is NOT coming back, though.It's too disgusting.  I went to Mattress Discounters and bought a new one yesterday. I might be the first customer they had to insist the mattress could not be too high. I started to explain why, but just stopped mid sentence. It was too complicated.

The mattress was supposed to be delivered today, but the only time they could do it was between 5 and 8 PM. I told them to wait until tomorrow. They won't guarantee that will be any different, but hope springs eternal. I need to get it covered in the allergy/dust cover and then get the bed made, which requires some rigorous climbing. I can't do that when Maggie is in the house needing all her interventions. If they can't do it while she's at school tomorrow I will have them leave it and Steve and I will do it Saturday morning.

Because our little Goldilocks has to have a mattress that's juuuuuust right.

At Full Tilt

Someone asked me recently how Steve and I feel after 16+years of raising Maggie. My first (and flip) thought was “tired” but I did not answer that way. Instead, I said what I truly believe. We feel like every other parent of a 16 year old. Despite the drama and complexities, parenting Maggie has many similarities to raising any other child. We love her, worry about her and want whatever is best for her. The specifics are different but the general ideas are the same.

Of course, the devil is in the details.

Many parents of 16 year old girls have to worry about academics and getting into the right college, the impact of certain friends, whether she will make the sports team,  is attending her music lessons or, on the darker side drugs, depression and teen pregnancy.  We don’t have to worry about any of those things, good or bad. We worry about oxygen saturation and tubes of all shapes and sizes to meet Maggie’s physical needs and worry about boredom and difficult logistics when it comes to meeting her social and emotional needs.

The common denominator is worry. That is what parents do.   Whenever someone says, “I couldn’t do what you do,” I feel very uneasy.  Of course they could and they would if it was their daughter.  Parents do what they have to do to protect and care for their child. I cannot say that either, though because people don’t want to imagine themselves in our situation. They find it tragic and sad and do not want to think of their own child like this. That makes me uneasy too.

Our life is not tragic and sad. It is simply life.  Trying to fit a nice clean label on it just does not work, and the words “sad” and “tragic” never work. This is Maggie’s life. This is how she was born. She is a fully engaged young woman with a range of things to offer. If anything I wish people would try to appreciate the wonder of our experience and save the labels for the jam jars.  

There are times when our life with Maggie is unbelievably difficult, but there are also raucous celebrations of the simplest achievements. You cannot spend 30 minutes with Maggie and still find anything about her life “sad” because she will have already made you laugh 10 times.

Maggie is living her life at full tilt and we are just along for the ride. In her case  the tilt is much steeper. It’s a tough climb up the steep incline, but it’s a great ride down. 

It’s all in how you look at things. Just move your lens a little bit and what you see won't be so scary.

Photos by Håkan Dahlström.  

Back to School

Today is the first day of school of 2011.

   

I remember trying to get the boys moving on school days. It was not an easy task. The first day back after vacation was nearly impossible. There was cajoling, and pleading coming from me and sloth-like grunts coming from them. I used my cheeriest (and most annoying) voice to wake them while turning on the light and singing a song. If a pillow wasn’t thrown at me, it was pulled over their tousled heads. When they did come downstairs, it was generally with about two minutes to spare.  They would eat a banana or a piece of toast as they left the house. Communication from either of them was rare. My singsong “have a nice day guys” was generally met with a tilt of the head or a single eyebrow raise.  

 Not Maggie; she was chomping at the bit to get going.

After two weeks of partying, and hanging out together every morning, we had to get up, face the morning routine and be outside for the bus at 7:10. Getting up at that hour is not a huge change, it’s not like we slept in during vacation. The nurse leaves at 7AM every morning so I was always up. Maggie was awake almost every morning, but not ready for her day.  Being “up” and being “ready” are two very different things. During vacation I got up at 6:55 and padded downstairs half asleep. In order to actually be ready, I have to be up around 6:15, load up the chair with the equipment and get Maggie downstairs.  When that alarm went off earlier than it has for the past two weeks, I really felt it.

 When I came into Maggie’s room this morning she was already in her chair waiting to go. Lucy had done almost all of the preparation and we actually had a few minutes. Maggie was jumping around in her chair, anxious to start down in the elevator. I had to laugh, even thought I wasn’t surprised. Last night Maggie kept using her talker to say, “Mom. Tomorrow is Monday I go to school.” When I said, “that’s right, are you excited to go back to school?” Maggie would waive her arm as though someone had plugged her in.

Now Maggie is at school. The house is quiet, there is not pop music playing. I can put away the Christmas decorations and get some work done. Or, for the first time in two weeks, do nothing at all.

(raises one eyebrow) That actually sounds good. I think there's a newspaper around here somewhere.