We Need a little Christmas, right this very minute.

I am about to break a family rule. It's December 2 and I am going to address Christmas. My sister Joan's birthday is tomorrow and we would never really talk about Christmas until after her birthday But those were back in the days when Christmas season was limited to a month rather than the three month extravaganza we all enjoy now. So sorry, Joni. You're out.

The Holidays are not easy when you've lost someone. Halloween, Maggies' favorite holiday, was hard and Thanksgiving was even harder. We were unprepared for both holidays. We never even carved a pumpkin for Halloween; and the Thanksgiving box never made it out of its basement storage spot until noon on Thanksgiving Day when I realized I didn't have my pilgrim salt and pepper shakers for the table. Both of those dates sort of sneaked up on us and we didn't get any of the joy of preparation.

Because of that, I decided we need a little Christmas, right this very minute. Steve brought the tree up last night and we will decorate it this evening. The holidays will still be hard, but we can do our best to make them festive. We have to find our joy wherever we can, even if we have to create it.

Part of this epiphany is due to an activity in which Steve took part on Saturday morning. He joined other members of the South End Rowing Club for the "Ho Ho Ho Row." About 15 rowers dressed as Santa or one of his elves, loaded toys into their rowboats and went from Aquatic park to Pier 39 to deliver the toys to the waiting San Francisco Fire Fighter for the Toys for tots programs. I was the unofficial photographer of the event. I stayed on dry land and took pictures as they shoved off, from the end of Pier 39 and when they arrived.

They call this the barge. That is mostly women in that boat.

Steve and my brother in law Vince. (Steve's in the Santa suit)

Steve and Vince Escape from Alcatraz

Fire fighters taking bags of toys.

(lots more photos at www.hohohorow.shutterfly.com)

It was such a fun event and such a great cause. Maggie would have loved it. It put Christmas in my heart and I'm going to do my best to keep it there.

And just because I know you are singing it, here's We Need a Little Christmas from Auntie Mame

And Happy Birthday to Joni tomorrow!!

Heading into the Holidays

My neighbor asked about our Thanksgiving plans. I told him we were having it here and it would be very quiet. That surprised him because he knows how big my family is. I told him this year quiet may be better for me since it will be the first holiday season since Maggie died.  He asked if I was still having a hard time.

 The answer is yes. 

And I'm not sure that will ever change

As of this writing it has been 9 months and 4 days and I feel like I miss Maggie more with each passing day. Maybe it is the approaching Holidays.  Maybe it was getting through Halloween. Maybe it's just because it's Tuesday. It doesn't matter why. I just miss her smile and her laugh and her joie de vivre.

its just not the same without her here.  

The 5th of July

I am really sore today. I spent the 4th of July day working at my father in laws house packing and moving things so that Russ, Steve's cousin in law can spruce it up to sell. I suspect the house will sell quickly, especially with the facelift.  That was at least my fourth trip out there and it is incredibly tiring, physically and emotionally, and I am feeling the effects today.

We just have so much on our plates this year.

I slept in the car as Steve drove us home late in the afternoon. Once we arrived I took a much needed shower, made dinner and then fell asleep about five separate times while watching TV. At 8:30 PM I was awake again and Steve asked me to go watch the San Francisco fireworks show that started at 9:30. Sure. We can't just sit here relaxing, can we?

We drove down toward the Marina, not daring to get too close to Aquatic park and Pier 39 where they were shooting them. Our target was the Marina Green, about a mile or so away. We knew it would be difficult or impossible to park near the water, so we parked just outside the Presidio and walked about a mile to the St Francis Yacht Club, just behind Marina Green. (I complained every step of the way. I know, delightful, right?) We arrived there about 9:15 and found dozens of parking places. Who knew? Oh well.

We wondered if we would see anything because the fog was in, but it wasn't hugging the water, so hope sprang eternal. It was so beautiful down there. We were just below the Golden Gate Bridge, but it was shrouded in fog and barely visible.

We could see the fireworks from Sausalito/Tiburon across the Bay in Marin. There was no fog over there. It was strange. we could see the end of the layer of fog even though we were standing in it. I took this picture with my phone, but it was hard to capture.

  

Then the San Francisco show started. You could basically see the bottom half of the fireworks from our vantage point. The top was lost in the fog. (I suspect those at Aquatic park got a full view, though) It was kind of cool, but there is a lot of watching the fog change color.

We chatted with a man who held his daughter as she slept on his shoulder. I missed Maggie alot as I watched them, like an aching longing. That made me smile in spite of things because I never took her down there for the fireworks. It was too cold (low 50's last night with the wind bowing hard) too late and too crowded. Still, I missed her and I wondered if I was too protective of her. I dismissed that thought pretty quickly and smiled remembering us making a flag cake and watching the fireworks on television together. I kind of missed that too.

Fireworks over, we walked back to the car and went right past the Palace of Fine arts, which is simply beautiful day or night - but especially at night.  It kind of put the fireworks to shame. (and it kept me from complaining on the walk back)

We were home before 11 and I climbed into bed and fell sound asleep, tired from a long day of activity.  I woke up this morning and realized another holiday has come and gone.

I guess that's what ths year will be, just checking them off and remembering.

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. 

The Most Wonderful Time....

Tuesday morning dawns rainy and wet. the start of several days of expected rain. Oh well, it is December, after all. It is curious to me that Christmas, Hanukkah, Kwanzaa, Yule and holidays from all the religions fall in the coldest time of the year, at least in the Northern Hemisphere. Many attend church services only this time of year when everyone is coughing and sick. Talk about sharing at Christmastime! "Hello sir, peace be with you, have some germs."

I understand that all these holiday are rooted in tradition and each brings hope and light at the darkest time of the year. I'm just saying, the darkest time of the year is also cold and flu season. Keeping Maggie healthy this time of year is particularly challenging. It always has been, but especially so since she's had the tracheostomy tube. It's like a germ superhighway into her lungs.  We are fighting off infection left and right. My hands are raw from washing.

Maggie seems somewhat healthier today. Perhaps this medication that is causing such problems for her gastrostomy tube is actually working. I had to change the tube four times last week and it's not very comfortable for her. (Usually the tube lasts more than a month). Even though we flush the tube after giving the medication, the residue seems to harden inside the tube and it becomes totally blocked. That means no food can get in and we have to fix it. Obviously I don't have that many clean tubes, so I've been washing them and re-using them, which is not cool. New tubes are on the way. Maggie has another week of this medication to go, too

Though changing the gastrostomy tube is a hassle for me and uncomfortable for Maggie I am glad the medication seems to be working. Maggie has this chronic condition that rears its ugly head periodically. There doesn't seem to be a thing we can do to fix it and the medication is simply a band-aid. We have tried various medications and not all of them work. Dealing with a blocked tube is a small price to pay if it works. Let's hope it keeps the symptoms at bay until after Christmas, at least. I'm so overwhelmed with all the holiday madness I don't think I can squeeze in an afternoon at UCSF.

Of course if we have to go, we have to go, but I would prefer if we did NOT, thank you very much. The hospital clinics are the worst place to be if you're sick. All that coughing and sneezing, it's worse than church.

Stay healthy, my friends.



.

Sure, Maybe!

The Holidays are here. That means parties, activities, and gatherings of all types. We do more in the last six weeks of the year than we do in six months. What do you do when you cannot get it all done? Just say no, and sit home with a movie and a fire in the fireplace. (Oh, wait, those are not allowed here in Nor Cal right now, we have to wait for the rain). There are worse things.

In our case, getting it all done includes all the holiday hustle and bustle that everyone else has. But we have additional considerations and responsibilities before we can take part in any social activity.

If it is an adult event, and kids are not invited, our issues are like those of someone with small children needing a sitter, but a bit more complicated. We need to get a nurse. Lately this has not been a problem and our fingers remain crossed for the holidays. In addition, frequently we have to hire an assistant for the nurse, someone who can lift Maggie and help with the care. This is more of a wild card. If we were in an age group where our friends had small children, this would not be that big of a deal. But we’re not. Most of our friends have grown children and haven’t had to consider this for a long long time. In fact, they’ve never had to consider the added complexities.

Sometimes folks are hurt when we cannot join in a given activity. It is often difficult for people to understand that one or both of us cannot make a certain outing. Often one of us will go alone, something we are very comfortable doing. (It’s either that or no one ever goes out.) Though we are comfortable doing it, it does not make either of us happy.

If it’s something kids are invited to there are even more things to consider:
1) Is Maggie included? I mean really included? Let’s face it; she freaks many people out. I do not want to take her places where she’s not welcome.
2) If so, can she physically get into the place – is there access? Public places are accessible but private homes are not. If there is access, is it meaningful. Just because you can get a wheelchair into a place doesn’t mean you can maneuver once inside. Will we be off in a corner to keep out of the way? No thanks.
3) What about the activity itself? Can Maggie take part, even as an observer, without getting stressed out? Movies are out because of her visual impairment. She cannot see or cannot process the moving images and the volume and the dark would freak her out.
4) Is it too cold for her? She gets sick easily.
5) Is it too crowded? That is just stressful for both of us. In addition to the maneuverability issue, there is practicality. Does Maggie really want to stare at everyone’s butt? Probably not.
6) Will she have fun? If yes, then let’s go and we will figure out 1-5 later.
7) Is she healthy enough? It’s December, everyone is sick. Winter’s are the hardest time of year for her (and everyone) health wise, But if Maggie gets sick it often means the hospital, no a day or two in bed. If she’s not up to it, then 1-6 are immaterial.

So please understand. We are operating in a world with different rules. We are not dissing you. We want to be able to do what we want when we want to do it. However, we do not enjoy that privilege.

And here is the secret,

That’s ok.

Therefore, if we are invited to anything, our answer is “Sure...Maybe!” What that means is: If
all of the above pieces fall neatly into place, we would love to come. However, there is good chance they won’t.

And then we stay home with a movie and a fire in the fireplace.

So it’s all good.