Our weekends are generally low key, just hanging out with Maggie and heading to the park etc. Not this weekend. We were going every minute and generally in all different directions.
Maggie and Steve had a cultured weekend. On Saturday they went to the deYoung museum, usually one of Maggie’s favorite places. That was less than thrilling because the museum is preparing for the arrival of the King Tut exhibit next week and lots of things were in flux and not available for viewing. Bah! Undeterred, they spent Sunday morning at the watercolors exhibit at the Presidio Officers’ club. They both enjoyed that.
I did not join them on either jaunt for other, less culturally sophisticated reasons. On Saturday, Tim spent the morning looking for a job with mom as the driver. (Cannot spend time, energy, or money you do not have on parking when you are job hunting.) On Sunday, I met up with my high school girlfriends for 24 hours of eating, drinking, and talking each other’s ears off. We accomplished all three goals. We stayed in a hotel in Fisherman’s’ Wharf and ate in touristy places and had a ball.
When I returned after 24 hours away, Maggie was less than thrilled with me. Before I arrived on Monday morning, she was, according to Steve, acting like a pill. This girl is S P O I L E D and does not approve of any change in the program that is not previously approved by her. Mom is supposed to BE THERE in the morning. Dad and Tim are capable, but not acceptable, substitutes. She was happy to see me, but not happy with me.
In addition to all that, we had parties for two cousins graduating from high school (yay!) and another cousin leaving San Francisco after a year at USF. Saturday afternoon, Steve and Tim loaded up his stuff and drove to the East Bay where his parents (Steve’s brother and sister in law) were scheduled to arrive at the grandparents’ house. At the same time, I headed to the North Bay to my sister’s house to attend the first of the two graduation parties. Maggie stayed home with the nurse.
Monday afternoon after arriving back from time with my girlfriends, we headed to Oakland for the next graduation party. This time Steve, Tim and I went together. Again, Maggie stayed home with the nurse. She was not pleased. The combination of Memorial Day traffic and the large set of stairs at my sister’s house made that decision for us. We were not gone very long because the nurse who was here needs help with all the procedures for Maggie. That gave us a total of three hours to be gone, including 30 minutes of driving each way (without possible traffic delays).
I nagged Steve and Tim to get ready so we could maximize our three hours between procedures. I was pleasantly surprised that there was no traffic at all on the way over there. We arrived at 1:30. Interestingly, there were no cars in front of my sister’s house. Hmmm. I looked at Steve and Tim, those kind and patient members of my family I had rushed out the door and said, “Uhhh, it might start at 2.” We went in anyway (don’t you LOVE people who show up early to a party!) and helped with the last minute preparations. My sister and her family just laughed at us.
Of course, we still had to be home by 4 to help the nurse, so our time at the actual party was even shorter than originally planned. Mercifully, there was very little traffic on the way home too. After all that running around, I had to take a nap. The nurse left at eight and I just hung out with Maggie on the floor and tried to make up for lost time after barely seeing her over the weekend.
She forgave me. She always does.
Tuesday, May 26, 2009
Friday, May 22, 2009
Tim's Home
Maggie is delighted that her big brother Tim is back. He came home last week but basically just dumped his stuff, including at least 10 loads of laundry and left again after a couple of days. He’s back to stay now and that makes her H A P P Y.
I spent the last few days doing that giant mound of laundry. I told Tim I would wash and dry it and leave it for him to fold and put away. The pile of clean clothes piled on the futon in the laundry room is impressive. Fortunately, there’s a tv down there too. He can put in a movie and just sit there and fold.
Somehow, Tim has to find a job. That’s not going to be easy in this economy. He looked into a few things last week before he left and lots and lots of resumes have gone out on craigslist this week. Now that he’s back he’s going to go into some of those places and let them see his handsome face. These employers need to see that he is a big strong guy because the anonymity of the internet is not helping him. The jobs he is qualified for (at not quite 19 years of age) are limited and there’s a lot of competition out there. He did get one bite, but nothing definitive.
Fortunately, San Francisco is a tourist mecca and there’s always work in that industry. There’s competition to be selected, but there’s always work. Tim would do well in that industry. He is very affable and knows the City like a book.
If he doesn’t find something I will hire him to do fix-it jobs around here. Things like painting and stripping the deck. This stuff needs to be done, but are not priorities. I will not spend the money on them unless Tim needs work.
Maggie would love it if Tim worked for me because he would be around that much more. Those two have a special connection and always have. Maggie will say something on her talker and Tim will just look at her as if to say, Really? You going there with me now? She knows it’s coming and waits for it. He delays…and then delivers. She laughs her head off. They can spend hours doing that.
Hmmm. If he works for me, I’m paying by the job not by the hour.
I spent the last few days doing that giant mound of laundry. I told Tim I would wash and dry it and leave it for him to fold and put away. The pile of clean clothes piled on the futon in the laundry room is impressive. Fortunately, there’s a tv down there too. He can put in a movie and just sit there and fold.
Somehow, Tim has to find a job. That’s not going to be easy in this economy. He looked into a few things last week before he left and lots and lots of resumes have gone out on craigslist this week. Now that he’s back he’s going to go into some of those places and let them see his handsome face. These employers need to see that he is a big strong guy because the anonymity of the internet is not helping him. The jobs he is qualified for (at not quite 19 years of age) are limited and there’s a lot of competition out there. He did get one bite, but nothing definitive.
Fortunately, San Francisco is a tourist mecca and there’s always work in that industry. There’s competition to be selected, but there’s always work. Tim would do well in that industry. He is very affable and knows the City like a book.
If he doesn’t find something I will hire him to do fix-it jobs around here. Things like painting and stripping the deck. This stuff needs to be done, but are not priorities. I will not spend the money on them unless Tim needs work.
Maggie would love it if Tim worked for me because he would be around that much more. Those two have a special connection and always have. Maggie will say something on her talker and Tim will just look at her as if to say, Really? You going there with me now? She knows it’s coming and waits for it. He delays…and then delivers. She laughs her head off. They can spend hours doing that.
Hmmm. If he works for me, I’m paying by the job not by the hour.
Wednesday, May 20, 2009
Hi, school!
Maggie is graduating from middle school in a couple of week. I am delighted that her school does the whole cap and gown thing and makes it a real graduation. Transitioning to high school is a big deal for every kid, and maybe more so for Maggie.I doubt Maggie anticipates the change. She knows she’s graduating and knows she’s heading to a new school. She’s been to visit the school, the classroom and the new teacher. But the reality of it won’t hit her until she arrives in August. That’s just the way it is.
In part that’s good. There is no angst and no dread of fitting in etc. In part it’s bad. There’s no appreciation for what she will leave behind. Maggie has no control over where she goes. She is at the mercy of those around her. She is delivered to a place and expected to adapt. Generally, she does just fine; but this transition is huge. She will be in a special ed class tucked away in a protected corner of an enormous high school. Will she be able to make friends like she has in middle school?
I’ve written before about the leaps in socialization she has enjoyed while at her current classroom. Her girlfriends are younger than she is and will not be making the move to high school. Will there be other girls , other friends like these?
I hope so, but there are no guarantees. These girls have not simply been nice to Maggie, they have been her friends. They’ve come to the house, called her on the phone, come to her birthday party and cheered her on at Special Olympics. (see pic)This is the right age and the right circumstance for that to happen. The girls were part of Maggies’ classroom and her teacher seamlessly made this happen. I’m not sure the high school classroom will have as much interaction with typically developing kids, or, if they do, that those kids will be as willing to befriend Maggie.
Perhaps it’s good that Maggie doesn’t have the angst and dread of fitting in. She has her mom to do that for her. One of us has to act like a grown up.
Tuesday, May 19, 2009
Can I count on your vote?
Today is election day in California. There are several propositions on the ballot dealing with California’s budget problems. They amount to rearranging the deck chairs on the Titanic. This state spends far more than it takes in. That means something has to change, but the two sides are polarized. Political stonewalling prevents both the necessary cuts to services to reduce spending and raising the necessary taxes to increase revenue. As a result, nothing is done. Nothing. And we keep circling the drain.
According to the polls, these propositions are going to lose. The only one with a chance would prevent the lawmakers from receiving a paycheck when they fail to pass a budget. It’s like the voters are saying: “Hey, you work for us. If you don’t do your job, you don’t get paid.”
The Governator loves to send things to the voters, which in principle is a good idea; but these propositions, like his first attempt, are badly drafted and have far reaching, un-doable effects. And, what’s more, they won’t solve any of the problems. Mr. Schwarzenegger is a smart guy and an astute businessman. He should stop using his Hollywood charm to gloss over important issues and treat the people of California as intelligent voters who are worried about the future of schools, police, fire fighters, state workers and innumerable programs for those in need, particularly the disabled.
When these propositions go down, there will be serious and significant cuts to services all over the state. Frankly, even if the propositions pass the cuts will come. I am very concerned about the nursing Maggie receives. I don’t think they will cut the number of hours to which Maggie is entitled, but they will definitely cut the reimbursement rate – again. This will impact my ability to find nurses willing to accept the lower amount. I have warned the nurses here that there may be cuts and I’m hopeful they will stick around.
Yesterday a local school board membe rsaid she’s going to vote against them even though there will be drastic cuts to schools in San Francisco and throughout California. It’s time for real reform and this band-aid won’t really help. She said if we have to go over the cliff to get real reform than that’s what we have to do. I understand that sentiment and think it has some validity; but that’s easy to say. She won’t be the one going over the cliff and neither will I.
It will be the weakest among us. It will be Maggie and her peers, especially those without families who can support them. It will be children in foster care without families to protect them. It will be the mentally ill who have nowhere to turn for help. It will be teachers, librarians, and other state workers who lose jobs. It will be homeowners whose houses burn because there aren’t enough fire fighters. And, it will be kids who don’t have sports or music or shop classes in school. They are the ones who will be lying in a heap at the bottom of the cliff.
I better go vote. If only I knew what to do.
According to the polls, these propositions are going to lose. The only one with a chance would prevent the lawmakers from receiving a paycheck when they fail to pass a budget. It’s like the voters are saying: “Hey, you work for us. If you don’t do your job, you don’t get paid.”
The Governator loves to send things to the voters, which in principle is a good idea; but these propositions, like his first attempt, are badly drafted and have far reaching, un-doable effects. And, what’s more, they won’t solve any of the problems. Mr. Schwarzenegger is a smart guy and an astute businessman. He should stop using his Hollywood charm to gloss over important issues and treat the people of California as intelligent voters who are worried about the future of schools, police, fire fighters, state workers and innumerable programs for those in need, particularly the disabled.
When these propositions go down, there will be serious and significant cuts to services all over the state. Frankly, even if the propositions pass the cuts will come. I am very concerned about the nursing Maggie receives. I don’t think they will cut the number of hours to which Maggie is entitled, but they will definitely cut the reimbursement rate – again. This will impact my ability to find nurses willing to accept the lower amount. I have warned the nurses here that there may be cuts and I’m hopeful they will stick around.
Yesterday a local school board membe rsaid she’s going to vote against them even though there will be drastic cuts to schools in San Francisco and throughout California. It’s time for real reform and this band-aid won’t really help. She said if we have to go over the cliff to get real reform than that’s what we have to do. I understand that sentiment and think it has some validity; but that’s easy to say. She won’t be the one going over the cliff and neither will I.
It will be the weakest among us. It will be Maggie and her peers, especially those without families who can support them. It will be children in foster care without families to protect them. It will be the mentally ill who have nowhere to turn for help. It will be teachers, librarians, and other state workers who lose jobs. It will be homeowners whose houses burn because there aren’t enough fire fighters. And, it will be kids who don’t have sports or music or shop classes in school. They are the ones who will be lying in a heap at the bottom of the cliff.
I better go vote. If only I knew what to do.
Saturday, May 16, 2009
Olympic Report
The Special Olympics were great. It was a perfect day -- clear but not too hot. Maggie had her game face on and was ready for action.
The stadium was full of hundreds of people, mostly school kids competing in one event or another. There is a high ratio of adults to kids in special ed, so there were plenty of teachers, therapists, aides, parents, nurses and other folks around as well. It always amazes me to see the level of dedication in the people who work with kids with special needs.
Maggie’s name was not on the slalom list and she did not get to compete in that event. That was a bummer because her friend Jordan was going to push her. Both girls were disappointed, but honestly, I was a little bit relieved. It is very easy to tip Maggie’s chair over and, in the excitement of the race, that was a distinct possibility.
The power chair race was another story. Maggie competed in this event last year when it took her at least 5 minutes to go the 20 yards. This year she did it in about tw
o minutes. All the competitors did it in about 15 seconds, so Maggie was the last one out there, but that made everyone yell for her even more. Here she is approaching the finish line. Every time I go to Special Olympics, something really gets to me. Yesterday was no exception. There was a manual chair race with kids who could propel themselves. This is incredibly difficult for these kids. They are not in chairs because an accident affected their ability to walk. The most common reason is cerebral palsy or something similar that affects the entire body, not just the legs. One young guy was out there moving himself forward very slowly and deliberately. I could see the concentration and pride. It made me a little teary, but I was shouting as loud as everyone else was as he neared the finish line.
I have to admit, the day was hard for me. Maggie’s challenges are just part of the fabric of our day, but seeing her out there with her true peers somehow brought the whole weight of this down on me. It was as though I was looking at my life through a different set of eyes.I am so proud of Maggie. She has accomplished far more than I ever anticipated she would given her physical and medical limitations. But you know what? It is a lot to deal with and occasionally I realize that.
Friday, May 15, 2009
Busy Friday
Just a quick post today. Lots of big happenings in Maggie's world.
Two different cousins graduate this weekend. Cousin Pete is finishing the University of Arizona and cousin Colleen is receiving her masters at the University of Vermont. Way to go guys!
Today is the Special Olympics track and field meet. This is the big meet that takes place at Kezar stadium. Last year it was so much fun and I expect nothing less this year. Maggie is in the power wheelchair race and the slalom event in the manual chair. Her girlfriends will push her in that one. If you're in the area pop into Kezar this morning.
The other news is that Maggie will have an extra fan in the stands today. Big Brother Tim arrived home yesterday after a year away at school. Whoo HOO! Maggie is a happy girl. She and Tim have always had a special bond. He will yell louder than anyone.
I know there are differing opinions on the Special Olympics. It still keeps kids separate. But my attitude is better separate and having fun than included and sitting on the sidelines.
Whatever your point of view, I have a suggestion. If you ever get a chance to go the Special Olympics, do it. Try to catch the opening ceremonies if nothing else. It makes your heart soar to see all those smiles.
Maggie crossing the finish line last year
Two different cousins graduate this weekend. Cousin Pete is finishing the University of Arizona and cousin Colleen is receiving her masters at the University of Vermont. Way to go guys!
Today is the Special Olympics track and field meet. This is the big meet that takes place at Kezar stadium. Last year it was so much fun and I expect nothing less this year. Maggie is in the power wheelchair race and the slalom event in the manual chair. Her girlfriends will push her in that one. If you're in the area pop into Kezar this morning.
The other news is that Maggie will have an extra fan in the stands today. Big Brother Tim arrived home yesterday after a year away at school. Whoo HOO! Maggie is a happy girl. She and Tim have always had a special bond. He will yell louder than anyone.
I know there are differing opinions on the Special Olympics. It still keeps kids separate. But my attitude is better separate and having fun than included and sitting on the sidelines.
Whatever your point of view, I have a suggestion. If you ever get a chance to go the Special Olympics, do it. Try to catch the opening ceremonies if nothing else. It makes your heart soar to see all those smiles.
Maggie crossing the finish line last year
Thursday, May 14, 2009
Take a Deep Breath
When Maggie came home from school yesterday, she was happy and rambunctious. Her breathing sounded thready and loud, though. The nurse and I agreed it was time to change the trach tube. Maggie was very cooperative throughout the procedure.
Changing the tube is easy. Tying it is difficult, especially for a left-handed mom with dexterity issues. The small flanges on the side of the trach have to be threaded with the ties which are then doubled around the back of her neck, threaded through the other side and tied tightly enough to keep the trach in place, but not so tight that Maggie’s neck is constrained. Then it has to be knotted over and over and over again because Maggie did not inherit my dexterity issues. Considering she has cerebral palsy, her ability to undo knots, zippers, buttons etc is unbelievable.
For a planned trach change like yesterdays, we get everything ready ahead of time to make it easier. The trach is threaded on one side ahead of time so things go quickly. That way I can hold the trach in place with one finger while I pull the ties around and thread it through the other side. In an emergency change, because of blockage or breakage, it is a bit more difficult. You have to move fast and just have to get the new one in immediately. Trying to secure it is very difficult because you need three hands, one to hold it in place and two more to thread the thing. The emergency likely means Maggie is thrashing around or crying, which adds to the challenge. They do make Velcro ties that are 1000 times easier, but those will not work for Maggie. She LOVES ripping Velcro and we would be in an emergency situation every two minutes.
The trach is changed at least once a week, and really more like every 5 days. That seems to be the period of time she can go without sounding like a Mack truck when she breathes. The nurses are not licensed to do the trach changes (though they can in an emergency) so that means I have done this probably 200 times in the past two years. I am good at it, but it still gets my heart rate up.
That trach change lasted about 12 hours. I heard the nurse yelling for me at 5:00AM and came running downstairs. The new trach broke, the tie pulled through flange, and she was holding it in place. Because she was there holding it I could prepare the new new one and start the procedure all over again. Heart rate goes just a little faster when you are pulled out of a dead sleep.
Now it is 6:02AM and I have read my email, checked facebook and written my blog. The coffee is ready but somehow, I am not interested in that first jolt of caffeine yet. I feel like I have already had 10. What I need to do is take a deep breath – and be glad I can do that without plastic and ties in my neck.
Changing the tube is easy. Tying it is difficult, especially for a left-handed mom with dexterity issues. The small flanges on the side of the trach have to be threaded with the ties which are then doubled around the back of her neck, threaded through the other side and tied tightly enough to keep the trach in place, but not so tight that Maggie’s neck is constrained. Then it has to be knotted over and over and over again because Maggie did not inherit my dexterity issues. Considering she has cerebral palsy, her ability to undo knots, zippers, buttons etc is unbelievable.
For a planned trach change like yesterdays, we get everything ready ahead of time to make it easier. The trach is threaded on one side ahead of time so things go quickly. That way I can hold the trach in place with one finger while I pull the ties around and thread it through the other side. In an emergency change, because of blockage or breakage, it is a bit more difficult. You have to move fast and just have to get the new one in immediately. Trying to secure it is very difficult because you need three hands, one to hold it in place and two more to thread the thing. The emergency likely means Maggie is thrashing around or crying, which adds to the challenge. They do make Velcro ties that are 1000 times easier, but those will not work for Maggie. She LOVES ripping Velcro and we would be in an emergency situation every two minutes.
The trach is changed at least once a week, and really more like every 5 days. That seems to be the period of time she can go without sounding like a Mack truck when she breathes. The nurses are not licensed to do the trach changes (though they can in an emergency) so that means I have done this probably 200 times in the past two years. I am good at it, but it still gets my heart rate up.
That trach change lasted about 12 hours. I heard the nurse yelling for me at 5:00AM and came running downstairs. The new trach broke, the tie pulled through flange, and she was holding it in place. Because she was there holding it I could prepare the new new one and start the procedure all over again. Heart rate goes just a little faster when you are pulled out of a dead sleep.
Now it is 6:02AM and I have read my email, checked facebook and written my blog. The coffee is ready but somehow, I am not interested in that first jolt of caffeine yet. I feel like I have already had 10. What I need to do is take a deep breath – and be glad I can do that without plastic and ties in my neck.
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