Tuesday, December 31, 2013

Holiday wrap up

This bust of Giovanna Sposa is at my mother's house. She is always decked out for Christmas. 

It's been a wild week around here. Grandma, aunt uncle and a cousin were here with Maggie's brothers and grandpa on Christmas Eve and then we headed over the river and through the woods to grandmothers house (about 4 miles) and visited with more cousins aunts and uncles there on Christmas Day. Maggie got time with Steve's Dad and with my mom as well as many of the cousins.

This week was the first time both my boys were home at the same time in over a year. I finally got a picture just as Eddie and Grace were leaving on Sunday.

Tim and Maggie shot off some nerf rockets while Eddie loaded his car. That was hilarious. 

Maggie was sad that Eddie was leaving until I reminded her that Ms Emily was visiting from Poland, so we had some yucks on Sunday night. 

All this and I've been sick since Christmas Eve. Not flat out in bed sick but the kind where you still do everything but you drag all day and cough all night. It's exhausting.That's nothing compared to health issues other family members are facing. All in all it's been a wild ride.  I'm hoping 2014 starts out healthier for everyone.

And now it's New Year's Eve. Wow. The holidays are drawing to a close. Maggie and I wish everyone a very Happy New Year. I hope 2014 is as good a year for Maggie as this one has been. And I hope it's good for all of you as well. 

Monday, December 23, 2013

Merry Christmas to all

It's hard to believe that Christmas is upon us again. It's a busy busy season that ends so peacefully. I like the busy-ness in the beginning, but long for the peaceful ending. The fact that I have to do food shopping for three big meals, and clean this cluttered house before that peace comes does not enthrall me, but it's all part of the whole Christmas gig.

Maggie thinks any season that involves a ton of shopping is a good season, no mater what your religious affiliation. We have shopped downtown, in Fishermans' Wharf, in Westlake, in Stonestown, in the neighborhood, on Clement Street and on the Embarcadero.(online too, but that does NOT count in Maggie's view.) Life is good for a shopaholic like Maggie. I have to work at the hospital this morning, but we will made one more run to the mall late this afternoon. Maggie needs to get something else for Tim. We found out yesterday someone else gave him what Maggie bought.

In addition to shopping, we do have certain traditions that go along with the Christmas season. Once is to ride the glass elevators at the Hyatt Regency. We did it every year until a couple of years ago when they decided to go all Homeland Security on us. We couldn't get in the elevator without a room key. We joined hotel guests when we could but it wasn't the same. We went this year and were able to ride again. Some floors were locked off, but we did get plenty of time in there. The hanging lights are always spectacular, especially as you ascend into them in the glass elevators.

 I think you can see how very much Maggie loves it.

Just in case we don't get back here before Wednesday, I want to say how very much I appreciate you taking the time to read about Maggie's antics and adventures.

Maggie and  I wish everyone a very Merry Christmas. If you don't celebrate Christmas, we wish you a very Happy Wednesday and all the Blessings of the Season, no matter how you celebrate.

Friday, December 20, 2013

Garbage Grinch

I think this is at least my fifth post about garbage. What can I say, it's a big part of my life.

I suspect we had a substitute garbage man working on our street this morning. I say that because I have a nice nodding relationship with the regular guy who laughs at me as I bring just one more bag down the stairs to the truck. He sees Maggie and waves and is generally a nice guy.

Whoever was assigned to our street today would definitely NOT fall into that category. I confess we have a lot of garbage. I mean A LOT. We already have the largest trash can they will give us and it is aways overflowing. Sorry, but you try fitting about 90 weekly diapers and other medical waste in addition to the regular garbage and you too will overflow. Everything is neatly in plastic garbage bags but today there were probably five bags sticking out the top of the can. That happens almost every week, though this week did seem especially bad.

I drove Maggie to school today and the garbage truck was up the street when we left. When I returned about 30 minutes later he was long gone.I could see the truck about four blocks down my street. Unfortunately, he didn't seem to appreciate our overflowing trash can as he left the five bags that were over the top of the can. He threw them on the ground in front of the now empty can. He had to go to extra effort to toss each bag onto the ground rather than just move the can to lift onto the truck. Seems he was intent on sending a Chritmas-y message. Sweet.

My neighbor was in his window and saw me reacting to this. He had a face that seemed to say Yikes!  i just said, if they think this is bad, just wait until next week hen we add Christmas stuff to it. I picked up the five bags and put them back in the can, which made it half full before the new garbage week even begins. I was wondering what to do when I noticed that the truck had not yet done the other side of the street. Perfect I took the five bags and distributed them in the cans of my neighbors across the street. Yes, that's probably against the rules, but I really don't care and neither will my neighbors. The garbage grinch might, but I'm not telling.

As I type the the truck is nearing the other side and I will get a lot of satisfaction when he picks up the trash he used to send me a message. Maybe I will see him as I leave and give him a sweet "Merry Christmas."

I'm sure his heart will grow three sizes - or five bags.

Tuesday, December 17, 2013

Who are all these people in our shopping areas?

Maggie had her dream weekend. We shopped both Saturday AND Sunday. Life doesn't get any better than that for her. Both days we were out early to make parking a little easier. No parking problem either day. However, there is a bit of a problem with the amount of people out and about so early. Generally when Maggie and I hit the stores early, there are very few others to get in our way. Not so in mid December.

With Christmas fast approaching, I needed to get a few things I had a specific idea in mind for somebody and we headed down to Cost Pus at Fisherman's wharf. That is a huge store full of colors and bright things that are entertaining to look at and to buy. They are also entertaining to try on. Maggie modeled several hats for the passers by.

Of course they didn't have what I was looking for, but we found something else. We put our stuff in the car and wandered around the wharf area. We stopped at Boudin to watch them make french bread and found out old friend Anna there. We say hello to her whenever we are around there. The bakery is a real working bakery, but there is a large exhibition window in the  front for tourists and others to watch. Anna interacts with the people outside the window via a microphone/speaker set up. As soon as she saw us the speakers blared, "Maggie, Hello! How are you doing?" Maggie thought that was hilarious and all the tourists were trying to figure out who Maggie was. Fame! So many things to worry about. 

After that we walked around the wharf for a while and admired the boats decorated for Christmas.

Sunday we returned to Stonestown for the first time since the great elevator outage of 2013. It was fine. Crowded and overwhelming, but fine. We did get a chance to try on some pink glasses, so the day wasn't a waste.

Like many malls, Stonestown has those kiosks in the middle and the sales people really hawk their wares. It is incredibly annoying. Generally you can avoid them but it was difficult maneuvering the wheelchair with the crowds.  It was freaking Maggie out a little to have these sales people in our face. One guy who insisted on trying to wrap some pillow around me and them Maggie was particularly annoying. I said "No Thank you" and he tried again. I stopped, looked him in the face and said, Look Buddy, I said no thank you - now BACK OFF. Very very Christmas-y. But it definitely cheered Maggie up for a minute but then  she ran out of energy pretty quickly after that happened.

We came home and caught the last quarter of the 49er game with Tim. As he often does, he grabbed Maggie out of her chair so they could sit together and watch the game. Hanging with him makes her very happy. 

All in all an excellent weekend. Now it's the last week of school and then vacation.

 We could shop every day. 

Oh save me. 

Wednesday, December 11, 2013

Dos and Don'ts for Helping a Friend with a child in the hospital

Maggie continues her run of good health. I am thankful for that every day. She hasn't been in the hospital in over two years, which is the longest time ever - by about 18 months. Prior to this run, she was in the hospital hundreds of times and, while I got more used to the routine, the fear and exhaustion were there every single time.

 Now I work part time as a parent liaison at UCSF Benioff Children's Hospital, helping parents navigate their child's hospital stay. Because I've been there, I can completely relate to the parents needs and wants. The faces, diagnoses, and circumstances widely differ, but the basic parental fear and protectiveness is almost always the same. 

I just saw this article on Huffington Post and thought I would share it. I can't say that I am 100% on board with it but probably 95%. Everybody has their own thing that works or doesn't work, but this is pretty close to right on. Here's the link http://www.huffingtonpost.com/dr-karin-l-smithson/conscious-relationships_b_4350876.html and I copied the list below too 

My take on this:
Change #1 to texting/emailing rather than calling. It's hard to field calls because there are so many interruptions in the hospital. 
#2 I don't expect anyone to look up anything and really don't want medical advice from well meaning friends who found something on the internet. 
I would never ever expect #3, but I would probably appreciate it. 
#10 and #11 should be in all caps and underlined.
#13 I reluctantly agree with that. Junk food is fun, but not what one needs when stuck in the hospital. Many hospitals, including UCSF don't have gardens (but the new hospital at Mission Bay will.)  That walk migh be through the halls and you will get an eyeful, but just be there. 

15 Dos and Don'ts for Helping a Friend With a Child in the Hospital
1. DON'T stop calling because you feel like you're bothering them.
DO check in and let them know you are here.
We pull back because we "don't want to bother" someone who is struggling. Let me debunk that myth: Your friend needs to hear from you. If you stop connecting, that communicates that their situation is unimportant. They will remember.
2. DON'T forget the diagnosis.
DO ask questions, remember the major issues and look them up.
Ask for the spelling of the diagnosis and care enough to be informed. You don't have to speak the medical language, but by understanding their child's issues, you will give a tremendous gift. And if you have questions -- ask. That shows you care.
3. DON'T forget a major surgery or test.
DO mark your calendar and send a message of support.
Someone remembering means the world. They will be blessed by your words, even if they don't have time to respond. This is especially true as they sit in the O.R. waiting room... waiting...
4. DON'T ignore them because you are scared they might cry.
DO have the courage to check in, even if it means you might hear emotion on the other end.
Our culture is afraid of tears. Please don't be. Just say, "I am so sorry that you are going through this. I care about you and your little one so much. I am here." Then be there.
5. DON'T forget that they are in the hospital when you are celebrating holidays.
DO recognize that they need love on special days.
While they don't want you to miss time with your family, they would treasure being remembered by a phone call, handmade card or video chat with everyone standing around a sign that says "We love you!"
6. DON'T believe that they "really don't need anything."
DO drop off a meal, clean or offer to take their kids. And you can always, always give the gift of prayer.
The majority of people have a very hard time asking for what they need, and knowing that they have food, a clean house or prayers lifted can get them through the day.
7. DON'T overstay your welcome by insisting on a sit-down visit.
DO bring food or supplies over, understanding that they don't have the energy to entertain you, unless they are clear that they need to talk. Then stay, help and listen.
Their schedule revolves around the hospital, family, sleeping and meals, so stay aware that they have a lot to get done while they are home. If your friend insists that having you there is comforting, stay and help.
8. DON'T get your feelings hurt if they cannot answer the phone.
DO know that they need to reserve their energy.
Understand that this does not reflect how much they love you. They are just doing their best to stay afloat on very little sleep and zero free time.

9. DON'T forget to respond to emails/texts/posts.
DO send a response to their messages saying something supportive. They are checking, because they need it.
While they may not have the time for one-on-one conversations, they will find great comfort in the middle of the night as they lie awake in the hospital checking messages -- reminding them that they are not alone (because they feel like it).

10. DON'T simplify or dismiss their child's medical condition by saying, "Everything happens for a reason." Please.
DO validate the seriousness of the illness by confirming that they are facing something very difficult.
Speak words of care and hope. Talk about the preciousness of the child and your love for them. Don't dismiss the crisis. Say, "I am heartbroken you and your baby are going through this. Hang in there and know there are so many people who care about you."
11. DON'T act like you can relate to the seriousness of the medical complication unless you have been through the same thing.
DO acknowledge that you are trying to understand it.
Do not try to trump their story with one of your own. If you can relate, offer to walk alongside them.

12. DON'T tell them all of the details of your week at the beach while they are in the hospital.
DO encourage them to do something "normal" if their child stabilizes. Offer childcare or a group date when they need it.
Remember, they haven't felt "normal" for a while -- and they miss it.
13. DON'T show up with junk food.
DO care enough about them to bring healthy munchies. DO take a stroll around the hospital with them.
Since their self-care is suffering, healthy food and movement will help their bodies. Bring homemade vegetables, a tray of sandwiches or cut-up fruit. Help them air out their tired souls with a walk in the hospital's garden.
14. DON'T forget to wash your hands or to stay away if you are sick.
DO wash your hands when you walk in the room, and only walk in with perfect health.
Understand that a virus on your hands can mean a catastrophic infection for their child.
15. DON'T forget to ask the parents how they are doing.
DO ask "How are you?" Then wait for the truth after they say, "I'm fine."
People often forget to check in on the parents. They are struggling with exhaustion, confusion and fear. Be there for them by being present to their struggle. Just listen -- they know you cannot fix things. They just need love.

Tuesday, December 10, 2013

I wish to go in the Bay

Christmas is coming, San Francisco style

Tuesday morning, 15 days to Christmas. Yikes. There is just too much going on.

Saturday morning, we took a break from all the hustle and bustle of the holidays to check out an event down at Aquatic Park. There was a fundraiser for Make A Wish Foundation that was sponsored or heavily involved with the San Francisco Police. San Francisco's hero "Batkid" was going to be there as was the Batmobile he used while saving Gotham City/San Francisco from all the evil doers last month.  We figured it was worth a look see. It did not disappoint.

The Batmobile was parked on the sidewalk for all to admire. Of course this being San Francisco, its friends at the SFPD slapped  a parking ticket on the windshield. (fake of course)

If it only had a wheelchair ramp, Maggie could save the world. 

It was freeeezing down there. It was in the low 40's at best and when you were in front of the water with no buildings to block the wind, it felt another 10 degrees colder. That didn't stop about 50 cops and other supporters from jumping in Bay. It was part of the fundraising challenge. Some were in police uniform, some were in swimming attire, some were in Santa Suits and some were in costume. It was hilarious.

We were so cold standing there watching that I was worried about Maggie. It hurt for me to breathe and I don't have a trach allowing the cold air to go directly into my lungs like Maggie does. Plus I can move around to keep warm and she cannot. We left shortly after the plunge into the bay. Still, the plunge itself was great and we were all laughing. I'll bet the water was warmer than the air - but getting out in soaking wet clothes would NOT be fun.

The fireboat salute at the end was pretty cool too. It made its' own rainbow.

Make a Wish is a wonderful organization. They granted a wish for Maggie many years ago and we had to do absolutely nothing. Everything was arranged from beginning to end and we could just spend time together as a family. It was nothing on the scope of Batkid's wish, but it meant just as much to us as that did to him.

If you are looking for something to support this Christmas, think of Make a Wish. They do so much for so many kids, generally without the fanfare they received for Batkid.

And hats off to the SFPD for their support of Make A Wish.

And for jumping in the Bay

Thursday, December 5, 2013

Won't you be my neighbor?

Every morning after Maggie is fed, changed and dressed, we quietly do all the frantic rushing. We get the talker programmed and packed, fill the portable oxygen tank, hang the fully charged and equipped suction bag on the back of the chair, and put a jacket on both Maggie and me. We put the pole for the talker on the chair and put the wheelchair tray out side the front door.Then we get out the back door, down the elevator, through the basement and out the garage door to wait for the bus.

The bus arrives somewhere between 7:30 and 7:40 On good days we are down there all put together and calm at 7:30. On other days we open the garage door while holding a feeding tube and buckling the last of the 7 straps and hope the bus isn't already out there with the lift down waiting for us. Good days and other days are fairly equal in number. Today was pretty good. And that gave me a few minutes to observe others in front of their houses getting their mornings underway.

Unless our next door neighbors happen to see us getting in to the elevator on the back deck, no one sees any of this. They really have no idea what it takes for us to get out in front by 7:30 AM (ish).  By the time the garage door opens we are together and ready to greet the neighbors walking dogs or driving by. For all they know we are carefree and easy going. But I also have no idea what it takes for them to be outside and ready to go at that hour either. While their circumstances are not like ours, the frantic rush may be in their houses too. Once we're out in front, that is all behind us.

This morning it dawned on me that they put up with a lot having us as neighbors. We are in a row house so there is a lot of togetherness. They can hear the drone of the elevator every time we take Maggie up or down. They can see the lights on in the middle of the night as the nurse works with Maggie. They hear the van that drops off the night nurse and picks her up again in the morning - especially when it honks its arrival. (I ask them not to). They see the delivery vans or the oxygen guy double parked in front of my house every few days.

In short, we are not the most convenient neighbors to have.

But none of them complain. Ever. This morning I watched my neighbor try to pull out of her driveway and navigate around Maggie's school bus just as she does almost every morning. Her kids need to get to school too, and they generally leave when the bus is here. She just waves at me and carefully maneuvers out of her driveway.  I watched my other neighbor wait for cars to go by so she could get around the bus and proceed on to work. She rolled down the window and yelled good morning to Maggie as she did that.   I watch the young guys next door come out and say hello to Maggie asking her questions that she can answer with a yes/no and marveling when she does so. They are a lot closer in age to Maggie then they are to me. All they want is to go get their morning cup of coffee at the nearby cafe but they always stop to say hello.

They all accommodate us in 100 different ways every single day and I never really stop to appreciate that. I bet they think nothing of it, it's just part of being a good neighbor. Even if they don't know the specifics of what goes on in our house, they get that we need a wide berth to get things accomplished. Life would be very unpleasant if they didn't make these accommodations for us, or if we even had to ask them to make them.

Asking is very awkward  because either the people feel bad that they didn't think of it themselves or, rarely, they really don't want to make the accommodation and resent being asked and lash out.  That is unpleasant for everyone. But we have never had to ask our neighbors anything.  They just do it automatically. And that's so nice.

 It's a neighborly day in this beautywood.

Monday, December 2, 2013

Rolling toward Christmas

How can it possibly be December? Thanksgiving is over, Hanukkah is half over and we are steaming toward Christmas.

This is the first year in many many years that I did not do the cooking. We spent Thanksgiving at my father in law's house and other than my contributions of mashed potatoes, stuffing and vegetables, I left the cooking to my sisters in law. Dinner was great. My father in law lives about an hour from here and going there is a little hard on Maggie. She does OK for a while and then melts down. This year was no exception. She melted down before dinner and I couldn't get her to calm down. I had to call in reinforcements in the person of her brother Tim. She always responds to him. 

It really is easier to stay here but it would have been difficult for my father in law to make the trek to our house, so we went out there. That house may be harder for Maggie's wheelchair than this one is, because it's a split level. You can't go anywhere without encountering a few steps. But there has to be a little give and take with these things. Maggie survived relatively unscathed. 

Thanksgiving notwithstanding, the high point of Maggie's weekend was attending a bowling birthday party for her friend Ben. Ben's family reserved 7 lanes and there were about 30 people at the fandango. There were at least 10 wheelchairs and maneuvering around was hilarious.  In order for Ben to get his turn, one chair would have to move forward and another back up to make room. All the folks enjoyed the slow motion chess game of getting chairs into the proper places. 

Maggie got smoked bowling. Both Ben and her other friend Clay have their own bowling ramps and a couple of others had personalized bowling balls. They were well prepared ringers! There aren't too many sports these folks can take part in, but bowling is definitely very friendly for the disabled. Check out Maggie's perfect shot. OK, maybe not perfect. It slowed down and veered right just before hitting the pins, but she's getting there.  She will give them a run/roll for their money yet.

I think I'm gong to get her this shirt for Christmas