Most of us have had the experience of sitting in the waiting room of a car repair shop while the tires were rotated, or some little thing was fixed. The waiting room generally has only “Popular Mechanics” and other things that only car aficionados would read. (Of course, the car aficionados are not in the waiting room, they are standing next to their cars chatting with the mechanics, but I digress). It is boring; but you just have to sit there because it seems these places are never close to a coffee shop or somewhere interesting to walk. We had a day like that yesterday, but instead of the car, it was Maggie’s wheelchair being tuned up. Believe me, waiting for your wheelchair is far worse than waiting for your car.
The waiting room was clean and fine. There were new wheelchairs waiting to be delivered and new shower chairs to look at. Most importantly, there was a mat table for Maggie to hang out on. We would have been lost without that. We cannot just put Maggie in another wheelchair while she is waiting, because she would just fall out. Maggie has zero trunk support; she cannot sit up on her own. Her wheelchair is custom made to meet her needs. The mat table was our only choice. A mat table is just that. A low table with a mat on top, it is lower and wider than a doctor’s exam table. It is something physical therapists have in their clinics. Of course, there are no sides on this, so I had to sit there with her to make sure she did not fall. We were on that table for well over an hour. Maggie amused herself by turning around in circles and trying to pull out the tangle of wires that probably ran the whole network for the place. Fortunately, she did not succeed.
Obviously, it is easier if I can bring the chair in while Maggie stays home, but sometime they need to see her and all her equipment to understand what the issues are. There were two problem areas yesterday: the headrest is constantly coming loose and the equipment Maggie needs does not easily fit on the chair. In addition, Maggie feels the need to do some work herself. There are screws and nuts missing wherever she can reach. I told them anything held together with duct tape should also be repaired.
Maggie’s chair weighs almost 100 lbs. In addition to that, she has 30-40 lbs of equipment hanging off the back. At all times we have to have the life support stuff, like the ambu bag, oxygen tank, and suction machine. In addition, there is her dynavox (communication device) with the support pole. If those are not attached to the front of her chair, they are hanging off the back. It is an engineering nightmare. You have to consider where and how to carry all this equipment. In fact, the straps of the equipment exacerbate the problem with the headrest loosening. Couple that with Maggie’s constant movement and fidgeting with all the screws and things, and you can start to understand why we needed some work done. Chris, the tech, is a genius/mad scientist. He just went right to work and sawing bits here, and adding things there. We have to wait for a new piece of the headrest to arrive, but when he was done, we had a tuned up smooth ride home.
Chris said he made it as “Maggie-Proof as possible.” That is the highest standard in the industry.
There’s “safe”, and then there’s “Maggie proof.”
Two very different things.
UPDATE!
Please note my new guestbook. I would love it if you would check in periodically and let me know where you are, what you think, and whether you have anything you want to know. I will answer if I can!
Wednesday, April 29, 2009
Monday, April 27, 2009
Take your daughter to church day
Historically, attending church with Maggie has been an adventure. Her appearance, her wheelchair and or her behavior, are a constant source of fascination, and wonder to all the other congregants. When she was little, she was in my arms, not in a wheelchair, but she looked very different from other babies, so she stood out even then. Things have not changed that much in 15 years, even though we have attended three different churches.
We started out at church #1, where the boys first attended school. The family service was at 8:45 AM, which is E A R L Y when you are getting three little kids ready on a Sunday morning. We inevitably came in about 5 minutes late. Others would come in far later than we did, but everyone always watched everything we did. One day the priest commented about us from the altar. Nice. That was in our waning days there and hastened our exodus. Too bad, though, because there was a man there that used to insist on giving me money to buy the kids doughnuts after church, it could have been very lucrative if we stuck around. FYI, I never kept the money, I think he just needed to do that for whatever reason. It was always uncomfortable for me, like we were a charity case or something, but it clearly made him feel better. The boys were not pleased when the doughnuts never materialized.
Church #2 was home for us. It is across town and it is where the boys attended school or the second half of their K-8 education. It is a beautiful church with a very loving feel and loving congregation. It was, however, not accessible for the wheelchair. Our entry there required taking a very noisy lift into the church. We were generally on time because being late was very disruptive. Of course, these were Maggie’s screaming years. She loved going to church and hearing the singing and watching everyone sit, stand and kneel in unison. That was HILARIOUS for her. However, whenever the church became quiet, which is generally the most important part of the Mass, and the time for personal reflection, Maggie would scream her head off. The echo was AWESOME. People were generally kind about it, but we knew they were annoyed. One woman complained to the usher right in front of me saying Maggie did not need to attend church anyway because she could not sin. (Obviously, this woman did not know Maggie very well.) Inevitably, I would have to leave church with Maggie. We (ok I) would have a bagel and coffee at one of the local shops while the boys attended mass. Too bad the guy from church #1 didn’t move with us, he could have paid for my bagels.
Once the boys went to high school, we started going to church closer to home. Because Maggie’s screaming and hollering was so pervasive, we generally left her home. We went to church separately, waited for the nurse to come or just did not bother. Then she got the trach and lost her ability to scream. Sad. But at least we could start taking her to church with us again. Of course, the sound of the screaming was replaced by the whirring sound of the suction machine, but too bad. In the last year or so, the suction has been less frequent (maybe 4 times an hour, instead of 4 times a minute).
So, lately we have been hitting church #3, which is about ½ mile up the hill. It is a fantastic place that seats around 2500 people. The noise of the suction machine is barely audible in that giant place. Only the people immediately around us can even hear it. We still tend to hit the family Mass, just because it is at a convenient time. There are many little kids making noise, so we look relatively pious. One or two little kids always come up to Maggie’s chair and gingerly touch the wheel or something. It’s cute, but it kind of bugs me too. Maggie loves it, so what the heck. Seems like we’re finally settling in to a routine.
Nope. Maggie will not have it. Since she cannot scream and carry on any more, she has taken to yanking on the trach ties throughout mass. She is very able to pull the thing out and has successfully done so on numerous occasions. We have to jump into action to get a new one in so she can continue to breathe. This would NOT be something that would be appropriate for church. Yesterday I had to hold her left arm down for the entire hour while we were at church. If I let go to scratch my nose or anything, wham! Her hand was right back pulling on the ties. You should also know that holding Maggie in any position is almost impossible. She is amazingly strong when she wants her body a certain way. And her arms – feggedaboudit – they are like springs.
It’s funny because Maggie LOVES to go, she just cannot stand not being the center of attention for that long of a time. I think there is a possibility she is missing the point of going to church. On the other hand, perhaps she is trying to tell me she’s not Catholic. Too bad. Unless she finds someone to push her to a different church, this is where we are going. I have to wonder, though, whether or not she will continue to join us.
If she does, I am going to have to find my old friend from church #1. Maybe now he will buy me a drink.
We started out at church #1, where the boys first attended school. The family service was at 8:45 AM, which is E A R L Y when you are getting three little kids ready on a Sunday morning. We inevitably came in about 5 minutes late. Others would come in far later than we did, but everyone always watched everything we did. One day the priest commented about us from the altar. Nice. That was in our waning days there and hastened our exodus. Too bad, though, because there was a man there that used to insist on giving me money to buy the kids doughnuts after church, it could have been very lucrative if we stuck around. FYI, I never kept the money, I think he just needed to do that for whatever reason. It was always uncomfortable for me, like we were a charity case or something, but it clearly made him feel better. The boys were not pleased when the doughnuts never materialized.
Church #2 was home for us. It is across town and it is where the boys attended school or the second half of their K-8 education. It is a beautiful church with a very loving feel and loving congregation. It was, however, not accessible for the wheelchair. Our entry there required taking a very noisy lift into the church. We were generally on time because being late was very disruptive. Of course, these were Maggie’s screaming years. She loved going to church and hearing the singing and watching everyone sit, stand and kneel in unison. That was HILARIOUS for her. However, whenever the church became quiet, which is generally the most important part of the Mass, and the time for personal reflection, Maggie would scream her head off. The echo was AWESOME. People were generally kind about it, but we knew they were annoyed. One woman complained to the usher right in front of me saying Maggie did not need to attend church anyway because she could not sin. (Obviously, this woman did not know Maggie very well.) Inevitably, I would have to leave church with Maggie. We (ok I) would have a bagel and coffee at one of the local shops while the boys attended mass. Too bad the guy from church #1 didn’t move with us, he could have paid for my bagels.
Once the boys went to high school, we started going to church closer to home. Because Maggie’s screaming and hollering was so pervasive, we generally left her home. We went to church separately, waited for the nurse to come or just did not bother. Then she got the trach and lost her ability to scream. Sad. But at least we could start taking her to church with us again. Of course, the sound of the screaming was replaced by the whirring sound of the suction machine, but too bad. In the last year or so, the suction has been less frequent (maybe 4 times an hour, instead of 4 times a minute).
So, lately we have been hitting church #3, which is about ½ mile up the hill. It is a fantastic place that seats around 2500 people. The noise of the suction machine is barely audible in that giant place. Only the people immediately around us can even hear it. We still tend to hit the family Mass, just because it is at a convenient time. There are many little kids making noise, so we look relatively pious. One or two little kids always come up to Maggie’s chair and gingerly touch the wheel or something. It’s cute, but it kind of bugs me too. Maggie loves it, so what the heck. Seems like we’re finally settling in to a routine.
Nope. Maggie will not have it. Since she cannot scream and carry on any more, she has taken to yanking on the trach ties throughout mass. She is very able to pull the thing out and has successfully done so on numerous occasions. We have to jump into action to get a new one in so she can continue to breathe. This would NOT be something that would be appropriate for church. Yesterday I had to hold her left arm down for the entire hour while we were at church. If I let go to scratch my nose or anything, wham! Her hand was right back pulling on the ties. You should also know that holding Maggie in any position is almost impossible. She is amazingly strong when she wants her body a certain way. And her arms – feggedaboudit – they are like springs.
It’s funny because Maggie LOVES to go, she just cannot stand not being the center of attention for that long of a time. I think there is a possibility she is missing the point of going to church. On the other hand, perhaps she is trying to tell me she’s not Catholic. Too bad. Unless she finds someone to push her to a different church, this is where we are going. I have to wonder, though, whether or not she will continue to join us.
If she does, I am going to have to find my old friend from church #1. Maybe now he will buy me a drink.
Friday, April 24, 2009
fellow blogspotter, can you help?
I am trying to figure out how to get a guestbook onto this site. I would love to know who pops in and out, but I am not savvy enough to make the connection. I have to embed code, but can't figure out where to add it on blogspot. And the help page is no help at all.
Does anyone out there know how to get a guesbook attached?
In the meantime, if you're stopping by, please say hello in the comments.
Sally
Does anyone out there know how to get a guesbook attached?
In the meantime, if you're stopping by, please say hello in the comments.
Sally
Thursday, April 23, 2009
Easy as Pie
Late night last night. I did not get to bed until after midnight. Medical emergency? No. Maggie drama? No. Night out on the town? Hardly. I was baking pumpkin pies. In April. Fortunately, our unseasonably hot weather broke and I was not blasting the oven in 90-degree heat.
Today there is a party for Ivana, Maggie’s friend and mentor at school. Ivana is the woman who uses a power chair and inspires Maggie to go faster and farther by joining in her power chair sessions. The teacher told me about this a while ago and said Ivana’s favorite thing is pumpkin pie. Teacher Joe said he usually makes three. Two to be consumed at the party and one for Ivana to take home with her. I said, let me do that. I am happy to do something so easy for someone who has been so nice to Maggie.
Shortly after making the offer, I forgot all about it. (That seems to be a habit with me lately.) As Maggie got off the bus yesterday afternoon, her nurse made an offhand comment about Pumpkin Pies on Thursday. I blanched. It was four o’clock then; I had a meeting at five, and did not have a single pumpkin pie ingredient in the house. I bought the stuff on the way home and planned to start making the pies after dinner. That was delayed by some drama with a volunteer group I am involved with.
It is funny. I am involved with several different organizations as a board member or volunteer in some capacity. It keeps me connected to the community and especially to organizations that have helped Maggie or other kids. I am working for things I believe in. It is feel good work. When the drama occasionally happens it does not feel so good, but volunteering means commitment and we cannot just run away when things get a little sticky.
However, why does it have to happen when I have already screwed up by forgetting my promise to bake pies? Dealt with the drama and finally started making the pies around 9:30 or so. It really would not do to make pumpkin pies and not have one for Steve. That would just be cruel. So instead of three, I made four. That meant two rounds in the oven and very late to bed. The bonus was the wonderful fall smell in the house on a spring night.
Maybe tonight we’ll have eggnog.
since we're talking about pumpkins and cooking, I figured you needed to see another pic of Maggie as the chef from last Halloween.
Today there is a party for Ivana, Maggie’s friend and mentor at school. Ivana is the woman who uses a power chair and inspires Maggie to go faster and farther by joining in her power chair sessions. The teacher told me about this a while ago and said Ivana’s favorite thing is pumpkin pie. Teacher Joe said he usually makes three. Two to be consumed at the party and one for Ivana to take home with her. I said, let me do that. I am happy to do something so easy for someone who has been so nice to Maggie.
Shortly after making the offer, I forgot all about it. (That seems to be a habit with me lately.) As Maggie got off the bus yesterday afternoon, her nurse made an offhand comment about Pumpkin Pies on Thursday. I blanched. It was four o’clock then; I had a meeting at five, and did not have a single pumpkin pie ingredient in the house. I bought the stuff on the way home and planned to start making the pies after dinner. That was delayed by some drama with a volunteer group I am involved with.
It is funny. I am involved with several different organizations as a board member or volunteer in some capacity. It keeps me connected to the community and especially to organizations that have helped Maggie or other kids. I am working for things I believe in. It is feel good work. When the drama occasionally happens it does not feel so good, but volunteering means commitment and we cannot just run away when things get a little sticky.
However, why does it have to happen when I have already screwed up by forgetting my promise to bake pies? Dealt with the drama and finally started making the pies around 9:30 or so. It really would not do to make pumpkin pies and not have one for Steve. That would just be cruel. So instead of three, I made four. That meant two rounds in the oven and very late to bed. The bonus was the wonderful fall smell in the house on a spring night.
Maybe tonight we’ll have eggnog.
since we're talking about pumpkins and cooking, I figured you needed to see another pic of Maggie as the chef from last Halloween.
Tuesday, April 21, 2009
What did she just say?
Every day Maggie comes home from school with her “news” programmed into her Dynavox (communication device). She hits the buttons, maneuvers the dynavox to her “news” page and lets us know what went on during the day. Her teacher programs that at the end of every single day. It takes several minutes to do and I appreciate his efforts.
Of course, it is my job to do the same thing when Maggie goes to school. I program in the “news” from home and she shares that with her classmates. I try to do it as a 15 year old would and use interesting phrases and sayings. It is difficult though for several reasons. First of all, (and this may shock some of you) our life is not that interesting from day to day. Often her news is something like, “my house is so boring. Mom had a meeting and Dad came home late so I was stuck with the nurse.” Blah. It’s necessary to spice things up a bit. Another difficulty is the voice output itself. It is not a human voice, but a synthesized computer voice without intonation. The delivery is very flat. If you put an exclamation point at the end of the sentence there is an almost imperceptible rise in the speech pattern. Same goes for a question mark. The last word of the sentence is slightly different which indicates it is a question.
To compensate for that, we try to use words and sayings that are more interesting but still acceptable for school. Though the lack of intonation may turn some people off, they are more likely to listen if the words are interesting. They are sayings that would ordinarily demand a lot of intonation and expression. They really hit the mark and become hilarious with the flat delivery. The contrast between the sayings and the delivery is entertaining and gets the attention of people. One of our standards is “sheesh!” when Maggie wants to convey frustration. Her teacher loves that. Often her news will describe some angst of her school day and finish with “Triple sheesh!” Every time Maggie hears that, she laughs. Other sayings in this ilk are “ay yi yi”, “Holey Moley,” “Yikes Stripes,” and the indignant “what is the world?” [Try saying any of those in a voice with zero intonation…it’s difficult)
I recently stole another such saying from a follower of this blog. She always has these upbeat posts and I’ve noticed her use of “woo and two hoos” periodically. I put that on Maggie’s talker on Friday (describing the upcoming weekend) and it was another huge hit with the kids and especially with the adults in her class. Maggie was particularly proud of herself.
If anyone has suggestions of sayings like these, lay ‘em on me. Maggie is always looking for new material. Her's a picture of Maggie's dynavox
. It's mounted on the front of her wheelchair and she uses the switches on the wheelchair tray to work it. - you can see the various pages listed - each is like a folder with additional stuff behind it, and she knows how to get where she needs to communicat. If youlook closely at the picture youmight be able to see "mom come here" at the top of her screen. She found those words and then hits the button to make it say the words written there. "Mom come here" is a HUGE favorite.
For you information “sheesh” “yi yi”, “Moley” and “hoos” are not recognized words in spell check. We are not picky about things like that.
It’s all phonetic, baby.
Of course, it is my job to do the same thing when Maggie goes to school. I program in the “news” from home and she shares that with her classmates. I try to do it as a 15 year old would and use interesting phrases and sayings. It is difficult though for several reasons. First of all, (and this may shock some of you) our life is not that interesting from day to day. Often her news is something like, “my house is so boring. Mom had a meeting and Dad came home late so I was stuck with the nurse.” Blah. It’s necessary to spice things up a bit. Another difficulty is the voice output itself. It is not a human voice, but a synthesized computer voice without intonation. The delivery is very flat. If you put an exclamation point at the end of the sentence there is an almost imperceptible rise in the speech pattern. Same goes for a question mark. The last word of the sentence is slightly different which indicates it is a question.
To compensate for that, we try to use words and sayings that are more interesting but still acceptable for school. Though the lack of intonation may turn some people off, they are more likely to listen if the words are interesting. They are sayings that would ordinarily demand a lot of intonation and expression. They really hit the mark and become hilarious with the flat delivery. The contrast between the sayings and the delivery is entertaining and gets the attention of people. One of our standards is “sheesh!” when Maggie wants to convey frustration. Her teacher loves that. Often her news will describe some angst of her school day and finish with “Triple sheesh!” Every time Maggie hears that, she laughs. Other sayings in this ilk are “ay yi yi”, “Holey Moley,” “Yikes Stripes,” and the indignant “what is the world?” [Try saying any of those in a voice with zero intonation…it’s difficult)
I recently stole another such saying from a follower of this blog. She always has these upbeat posts and I’ve noticed her use of “woo and two hoos” periodically. I put that on Maggie’s talker on Friday (describing the upcoming weekend) and it was another huge hit with the kids and especially with the adults in her class. Maggie was particularly proud of herself.
If anyone has suggestions of sayings like these, lay ‘em on me. Maggie is always looking for new material. Her's a picture of Maggie's dynavox
. It's mounted on the front of her wheelchair and she uses the switches on the wheelchair tray to work it. - you can see the various pages listed - each is like a folder with additional stuff behind it, and she knows how to get where she needs to communicat. If youlook closely at the picture youmight be able to see "mom come here" at the top of her screen. She found those words and then hits the button to make it say the words written there. "Mom come here" is a HUGE favorite.For you information “sheesh” “yi yi”, “Moley” and “hoos” are not recognized words in spell check. We are not picky about things like that.
It’s all phonetic, baby.
Monday, April 20, 2009
Sproingggg!
Wow! Spring arrived with a vengeance this weekend! There are about 5 days a year when the temperature in San Francisco tops 90 degrees– and today is the second day in a row. We are temperate people here and this is too hot for us. Ok, it’s too hot for me, and especially too hot for Maggie. She wilts like a flower in the heat. We put lots and lots of water through that tube on days like this.
There are benefits to the hot weather, though. First of all it is BEE-YOO-TEE-FULL outside. The flowers and the water are just jumping off the landscape. Also, the hot weather gives Maggie a chance to wear some cool shorts she received as a birthday gift. Generally she is bundled up as we sit in the cold fog waiting for the bus to arrive. Even days that turn out nice generally start out cold.
Maggie was resplendent in her colorful garb this morning as she got 
into the elevator and was laughing her head off at the warmth of the sun so early in the morning.
With weather like this it’s difficult to get into the Monday-ness of things. It was a fantastic weekend hanging with dogs on the beach Friday night, being local tourists Saturday and just hanging back on Sunday. By the time we got the dogs to the beach on Friday night it was C O L D. The weather was clear and beautiful, but the wind was blowing and very chilly. Saturday was a nice day and not too hot. We spent the morning walking around Fisherman’s Wharf acting like tourists.We went out on the Hyde Street Pier and looked at the historic ships, including the ship that was used as the Don Johnson’s office on Miami Vice [Funny, that wasn’t listed in the National Park Services information.] We saw crabs trying to crawl out of their pools at the fish markets and perused the wares of the street artists.
The best, though was our stop at the Musee Mechanique on Pier 45. (Check it out http://www.museemechanique.org/index.html) It is a collection of antique attractions from amusement parks, especially Playland at the Beach. For you locals, even Laughin' Sal is there! (My hero!) It’s free to enter and look at these beautiful machines and you can play with any of them for about $.25. The carnival noise and atmosphere is fun, but it’s constant and it was a
little overwhelming for Maggie after a while. She looked like a deer in the headlights after about 30 minutes so we wandered back outside into the sunshine. Maggie has her very own Laughin' Sal anyway, who needs to spend a quarter on that?
There are benefits to the hot weather, though. First of all it is BEE-YOO-TEE-FULL outside. The flowers and the water are just jumping off the landscape. Also, the hot weather gives Maggie a chance to wear some cool shorts she received as a birthday gift. Generally she is bundled up as we sit in the cold fog waiting for the bus to arrive. Even days that turn out nice generally start out cold.
Maggie was resplendent in her colorful garb this morning as she got 
into the elevator and was laughing her head off at the warmth of the sun so early in the morning. With weather like this it’s difficult to get into the Monday-ness of things. It was a fantastic weekend hanging with dogs on the beach Friday night, being local tourists Saturday and just hanging back on Sunday. By the time we got the dogs to the beach on Friday night it was C O L D. The weather was clear and beautiful, but the wind was blowing and very chilly. Saturday was a nice day and not too hot. We spent the morning walking around Fisherman’s Wharf acting like tourists.We went out on the Hyde Street Pier and looked at the historic ships, including the ship that was used as the Don Johnson’s office on Miami Vice [Funny, that wasn’t listed in the National Park Services information.] We saw crabs trying to crawl out of their pools at the fish markets and perused the wares of the street artists.
The best, though was our stop at the Musee Mechanique on Pier 45. (Check it out http://www.museemechanique.org/index.html) It is a collection of antique attractions from amusement parks, especially Playland at the Beach. For you locals, even Laughin' Sal is there! (My hero!) It’s free to enter and look at these beautiful machines and you can play with any of them for about $.25. The carnival noise and atmosphere is fun, but it’s constant and it was a
little overwhelming for Maggie after a while. She looked like a deer in the headlights after about 30 minutes so we wandered back outside into the sunshine. Maggie has her very own Laughin' Sal anyway, who needs to spend a quarter on that?Enjoy the sunshine. You know the fog will be back. After all, it’s almost Summer!
Laughin Sal
Friday, April 17, 2009
Mom, What are you DOING?
I was surprised to learn that Maggie was in trouble in school yesterday. It seems the class met for their morning meeting and Maggie did not have any “news” to share. I did not understand that at first. When I heard her news from school, I understood that she refused to share her news, which was surprising enough. However, when the nurse arrived to wait for the bus I learned that in fact Maggie’s news was not on the computer at all. That is strange, because I know I programmed it, but apparently I forgot to save it. Or I have reprogrammed some other important page on her device that will rear its head at another inopportune time. Time will tell.
Maggie’s voice, homework, and overall cooperation are dependent on her forgetful, technology challenged and often-overwhelmed mother. I can barely keep myself together and I am supposed to make her look good too? Puh-leaze.
Maggie’s voice, homework, and overall cooperation are dependent on her forgetful, technology challenged and often-overwhelmed mother. I can barely keep myself together and I am supposed to make her look good too? Puh-leaze.
Fortunately, because of Maggie’s good nature and mischievous outlook she LOVES it when I screw up. She finds it hilarious when I am trying to “reason” with her communication device or accidentally press “clear” right when I am done programming it. She stiffens up and laughs her head off, especially at the predictable “&*$@*!%#!” that follows. When Dad says,”Maggie, what did mom say” she really cracks up.
Maggie loves the rushing around in the morning. She howls with laughter at me asking where she has thrown her other sock. She is used to having me brush her hair as we descend in the elevator generally with her shoes balanced on the back of the chair. She smirks when the nurse arrives and notes some piece of equipment not on the chair so that I have to run upstairs and get one more thing while the nurse puts her shoes on.
The thing is Maggie likely knows well before I do what I’ve forgotten, or that I’ve failed to program the computer correctly, or that we’re going to have to really rush to meet the bus, or whatever the issue is. She knows everything but she is dependent on me to be able to communicate it. Since I am clueless, she just waits for me to realize it or for someone else to point out the mistake and then she laughs and laughs. The payoff never fails to entertain her.
It is a good thing Maggie finds my ineptitude so entertaining. Can you imagine if she was a perfectionist that had to rely on me to be her voice and the one in charge of the presentation she make to the world? You could add an additional set of problems to her already long list. She is stuck with me and my flighty ways, so it is a very good thing she has a sense of humor. Wednesday, April 15, 2009
Pay It Forward
The Family Advisory council (FAC) met last night. This is an advisory board of sorts for the UCSF Children’s Hospital. The head of the hospital attended the meeting to thank the council for its commitment to the Children’s Hospital. We do not really see the effects we have anywhere but she assured us that we have a lot of power within the institution. For example, if the FAC has approved something, folks are reluctant to mess with it. That was nice to hear, because it’s easy in a large bureaucracy to feel small and insignificant.
Several new members joined the board last night and we took time to make introductions and explain why we are members of the board. For the parents on the board, the reason is simple: we have a child that was or is served by the UCSF Children’s hospital and want to give something back.
Many of us have been part of this board for two or three years and know the stories of each other’s children. With all the new members, though, everyone explained their situation just a little more clearly. On the other hand, maybe I just decided to listen closer. The stories are as varied as the children themselves. There are patients who spent weeks in the hospital protecting their unborn babies from high-risk pregnancies, some with positive results, and some without. There are parents of children who needed just one outpatient procedure and those (like me), whose child has permanent and ongoing medical issues. There are parents whose children made amazing recoveries from the brink of death and those who lost children despite the best efforts of a great hospital.
As we went around the table telling our stories, I was struck by the individual drama of each story and each parent’s willingness to put that drama aside and work to make UCSF Children’s Hospital a better place for all families. It was humbling but it made me proud; I was feeling two competing emotions at the same time.
If the only change we effect is small, it is worthwhile. It is worthwhile to hear and understand that other families have stories more compelling than mine, and that they appreciate the importance of sharing their unique body of knowledge to assist others in the same position.
There is nothing good about having a sick child, or losing a child, but something good can come from it
Several new members joined the board last night and we took time to make introductions and explain why we are members of the board. For the parents on the board, the reason is simple: we have a child that was or is served by the UCSF Children’s hospital and want to give something back.
Many of us have been part of this board for two or three years and know the stories of each other’s children. With all the new members, though, everyone explained their situation just a little more clearly. On the other hand, maybe I just decided to listen closer. The stories are as varied as the children themselves. There are patients who spent weeks in the hospital protecting their unborn babies from high-risk pregnancies, some with positive results, and some without. There are parents of children who needed just one outpatient procedure and those (like me), whose child has permanent and ongoing medical issues. There are parents whose children made amazing recoveries from the brink of death and those who lost children despite the best efforts of a great hospital.
As we went around the table telling our stories, I was struck by the individual drama of each story and each parent’s willingness to put that drama aside and work to make UCSF Children’s Hospital a better place for all families. It was humbling but it made me proud; I was feeling two competing emotions at the same time.
If the only change we effect is small, it is worthwhile. It is worthwhile to hear and understand that other families have stories more compelling than mine, and that they appreciate the importance of sharing their unique body of knowledge to assist others in the same position.
There is nothing good about having a sick child, or losing a child, but something good can come from it
Monday, April 13, 2009
The Dance of Joy
We are here; we are fine.
It has just been crazy busy around here.
Maggie went back to school today after a week of Spring break. Spring break here does not mean a trip to Disneyland of any other fun outing. It means mom has to fill the eight hours a day that the school generally does. Every day Maggie is home means probably thirty more transfers for me – thirty more times each day that I lift her from the floor to the wheel chair, or the wheelchair to the bed or whatever. I. am. Exhausted.
In addition to the physical strain, it is my job to make her time at home fun. This for a child who does not watch movies or TV. Fortunately, Maggie is the easiest person to please in the entire world. The iPod was playing the Maggie Mix all week. My friend Rose and I did the YMCA dance for her (not pretty) and I thought she would stop breathing from laughing so hard. A trip to Target is huge entertainment. Couple that with a trip to the assisted living center that my aunt just moved to and you have hit the jackpot. We had her friend over, we went to the park, we went shopping, and we did a power chair trip or two. We hit a couple of therapy appointments and filled the week nicely. She had fun.
I have a news flash. Mothers of disabled children welcome the first day back to school just as much as (if not more than) mothers of typically developing children. I was very happy to see that school bus this morning. When I closed the wheelchair door on the bus, I did the dance of joy – a secret dance that only parents of school age children know. Every parent does his or her own version. Personally I prefer to wait until the garage door closes and just go for the junior high cheer leader routine (a la Molly Shannon in “Superstar”)
The last few days have been particularly busy. Dealing with my lovely aunt as she adjusts to her assisted living arrangement, cooking for in-laws, taking Maggie to a crowded Easter Mass, making a ridiculous over amount of food 
for the Easter potluck, breaking my toe in a middle of the night encounter with the blanket chest, etc etc etc.
for the Easter potluck, breaking my toe in a middle of the night encounter with the blanket chest, etc etc etc.In addition, my sister’s dog Darby arrived to stay with us for a week. Darby is zero trouble. She spent the first day staring out the front door wondering when her “dad” was returning. We took her to Golden Gate Park a couple of times but she was nonplussed. After a walk at Crissy field today she decided we were “ok” and totally forgot about that other family that abandoned her for a week of fun and frolic sans canines. We sent this picture to my sister telling her Darby was on vacation too and who needs them anyway?
Of course, there’s no break yet. Today I finally tended to the things I ignored last week. I have meetings and appointments all week. There might be a few free minutes on Friday.
Don’t tell anyone.
Friday, April 10, 2009
Spring Break
Today is the last day of Maggie’s Spring Break. It has been a long week of going on outings and finding entertainment for each day. It does not have to be much, just SOMETHING to help pass the time. We went to visit my aunt a couple of times, went to Target (Maggie’s favorite place), had her friend over, went to the park a few times and yesterday Teacher Joe and Ivana came to visit and we went around the neighborhood in a power chair.
Maggie does a lot better in the power chair when Ivana comes to visit. Ivana works in the classroom one or two days a week. She has also uses a power chair and for the past few months has been joining in when Maggie practices in the power chair. Its great incentive, Maggie simply tries harder when Ivana is there. The other day it took about 30 minutes to go up the block and come back in the power chair. Yesterday, we went four times that distance in the same amount of time. When it is just Dad or me accompanying her, Maggie does not seem to be able to sustain her head in the position to make the chair go. When Ivana is here, Maggie goes like a son of a gun.
It would really be something if Maggie could emulate Ivana in other ways. I do not know all the details, but I know Ivana was instrumental in getting her living arrangements organized. She lives independently with assistance. Her attendant arrives in the morning and helps her get ready, fixes breakfast etc. Then Ivana is out and about on her own. We run into her everywhere, walking the dog at Crissy Field, the power soccer camp, shopping, at school, everywhere. She takes public transportation and arrives ready for action. Ivana is an independent woman who happens to have some significant disabilities, not a disabled woman who is able to get out occasionally.
I know Maggie will never achieve that level of independence. Her disabilities are too profound and her medical needs will always require one to one nursing support. However, having Ivana around now is helping Maggie get to the next level. We have always taken things one slow step at a time and enjoyed the progress when we see it.
For this last weekday of break, we need one more fun outing. I considered taking Maggie to the new Hannah Montana movie, but it turns out I am not that wonderful of a mother. I cannot handle opening day of a pre teen movie on Good Friday. We’ll just do another loop in the power chair before we have to send it back to school on Monday. Maybe after yesterday we can make it all the way around the block in an hour or so. Go Speed racer go!
Happy Easter, everyone. Don’t put all your eggs in one basket.
Monday, April 6, 2009
Vista de los Old Folks
My Aunt had a fall recently. Now that she is finally out of the hospital, she needs more care than usual while she returns to her fighting form. That means she has gone into the dreaded Assisted Living situation. No one jumps at the chance to do this. For many senior citizens this means the end of independence and independent decision-making. However, it does not have to be that, it can be a warm community. It can be a place where people mingle, go on outings, eat in the dining room and make new friends. It can be a place with private apartments and your own furniture and help just a button push away. We found such a place for her and she moved in today straight from the hospital.
We are hopeful that my aunt embraces all the wonders of this place. Before getting there she was referring to the place as “Vista de Los Old Folks”, but if you knew her, that would not surprise you. She has a sharp wit and an even sharper mind.
Good news! She was very pleased when she arrived. Her favorite chair was there along with her own television and her own bed. Her clothes are in the closet, a few of her own dishes in the cupboard. The place is clean and nice. She has the buzzer around her neck and help is just moments away. She is ready to get back to her strongest.
Before she arrived today, I went out there with some clean towels. These were the last of the possessions she had requested. Because Maggie is on Spring Break, I brought her with me. She was a big hit there. I have a feeling Maggie will have more friends there than anyone in a very short amount of time. I was pushing Maggie’s wheelchair down the hallway with one hand and holding the laundry basket under my other arm. My favorite moment of the day was when one of the residents stopped me and asked if she could help me. It is a friendly, vibrant place, and people want to get to know you right away. Inasmuch as the woman offering help was using a walker, I am not sure how she would have helped. Nevertheless, I greatly appreciated the offer. I smiled and said, “No thanks. I’m used to this, we do all sorts of stuff one handed.” But I was grinning all the way down the long hallway to my aunt’s apartment.
It’s funny; senior citizens generally do not want to embrace this lifestyle because of the stigma that comes with it. From where I am sitting, it just does not look that bad. Someone cooks, cleans, help you out and drops you off at shopping centers or arranges other outings if you are interested. They need that for middle-aged overworked mothers.
Vista de los Old Folks just might be the perfect spot.
We are hopeful that my aunt embraces all the wonders of this place. Before getting there she was referring to the place as “Vista de Los Old Folks”, but if you knew her, that would not surprise you. She has a sharp wit and an even sharper mind.
Good news! She was very pleased when she arrived. Her favorite chair was there along with her own television and her own bed. Her clothes are in the closet, a few of her own dishes in the cupboard. The place is clean and nice. She has the buzzer around her neck and help is just moments away. She is ready to get back to her strongest.
Before she arrived today, I went out there with some clean towels. These were the last of the possessions she had requested. Because Maggie is on Spring Break, I brought her with me. She was a big hit there. I have a feeling Maggie will have more friends there than anyone in a very short amount of time. I was pushing Maggie’s wheelchair down the hallway with one hand and holding the laundry basket under my other arm. My favorite moment of the day was when one of the residents stopped me and asked if she could help me. It is a friendly, vibrant place, and people want to get to know you right away. Inasmuch as the woman offering help was using a walker, I am not sure how she would have helped. Nevertheless, I greatly appreciated the offer. I smiled and said, “No thanks. I’m used to this, we do all sorts of stuff one handed.” But I was grinning all the way down the long hallway to my aunt’s apartment.
It’s funny; senior citizens generally do not want to embrace this lifestyle because of the stigma that comes with it. From where I am sitting, it just does not look that bad. Someone cooks, cleans, help you out and drops you off at shopping centers or arranges other outings if you are interested. They need that for middle-aged overworked mothers.
Vista de los Old Folks just might be the perfect spot.
Friday, April 3, 2009
Things that go BUMP in the night
Rough night last night. I had to get up to help the nurse at 2:30AM and never got fully back to sleep after that. Every time I started to drop off I would feel this rush of adrenaline and find myself wide-awake, heart racing.
It is not as though the assistance needed was life and death or anything like that, but happily, it has been a while since I have had to get up from a sound sleep to address a medical need. I guess I’m out of practice and could not just shut off the adrenaline as I used to.
I was in a dead sleep dreaming about someone trying to get me up and realized the nurse was yelling my name. That was disconcerting. We have two phone lines in the house and when they need help they call from the fax line extension in Maggie’s room and it rings right next to our bed. When I realized she was yelling I thought it was something too serious to spend time dialing. I flew down the stairs.
Maggie pulled out her gastrostomy (feeding) tube. It’s in her stomach in a surgically created hole (or ostomy) and it stays in place by a small balloon filled with water. You insert the tube with the balloon deflated and fill it up with a syringe once it’s in place. Filling it is painless; having it in there is painless. Pulling it out, with the balloon inflated is not. Maggie has done it before, but not very often. She had that shocked sheepish look on her face when I arrived at her bedside. It was a combination of sorry and YEOWCH!
The nurse was poised for action, though she was ready to rip open a box of extension tubes rather than the tube we needed. I looked at the tube Maggie had pulled out and decided to just put it back in, as it was not broken. I only have one spare right now that we are keeping in Maggie school bag so it is always with her. Usually I have a couple, but I am waiting for a delivery. No sense using the only spare if we do not have to. I deflated the balloon, reinserted it, re-inflated the balloon and gave Maggie a kiss.
I asked the nurse why she didn’t just use the phone and she told me both phones were dead. She could not get a dial tone on either one. Now that was curious. I picked up each line and the phone was working perfectly. Now it was her turn to look shocked and sheepish. I padded back upstairs where Steve was sleeping soundly (grumble). As I was getting back into bed, I CRASHED my knee into the blanket chest at the bottom of the bed. Now my face had the YEOWCH look, and I woke Steve.
Overall, it was much ado about nothing. The nurse could have handled it herself, but it was fine she called me. I just could not settle back down. I got up early, showered, and dressed before coming downstairs at 6:30. Undoubtedly, I will hit the wall later today, but other than my slightly bruised knee, I am getting a lot done.
Of course, at 8:30AM the afternoon nurse called to cancel.
Ironically, her knee hurts.
It is not as though the assistance needed was life and death or anything like that, but happily, it has been a while since I have had to get up from a sound sleep to address a medical need. I guess I’m out of practice and could not just shut off the adrenaline as I used to.
I was in a dead sleep dreaming about someone trying to get me up and realized the nurse was yelling my name. That was disconcerting. We have two phone lines in the house and when they need help they call from the fax line extension in Maggie’s room and it rings right next to our bed. When I realized she was yelling I thought it was something too serious to spend time dialing. I flew down the stairs.
Maggie pulled out her gastrostomy (feeding) tube. It’s in her stomach in a surgically created hole (or ostomy) and it stays in place by a small balloon filled with water. You insert the tube with the balloon deflated and fill it up with a syringe once it’s in place. Filling it is painless; having it in there is painless. Pulling it out, with the balloon inflated is not. Maggie has done it before, but not very often. She had that shocked sheepish look on her face when I arrived at her bedside. It was a combination of sorry and YEOWCH!
The nurse was poised for action, though she was ready to rip open a box of extension tubes rather than the tube we needed. I looked at the tube Maggie had pulled out and decided to just put it back in, as it was not broken. I only have one spare right now that we are keeping in Maggie school bag so it is always with her. Usually I have a couple, but I am waiting for a delivery. No sense using the only spare if we do not have to. I deflated the balloon, reinserted it, re-inflated the balloon and gave Maggie a kiss.
I asked the nurse why she didn’t just use the phone and she told me both phones were dead. She could not get a dial tone on either one. Now that was curious. I picked up each line and the phone was working perfectly. Now it was her turn to look shocked and sheepish. I padded back upstairs where Steve was sleeping soundly (grumble). As I was getting back into bed, I CRASHED my knee into the blanket chest at the bottom of the bed. Now my face had the YEOWCH look, and I woke Steve.
Overall, it was much ado about nothing. The nurse could have handled it herself, but it was fine she called me. I just could not settle back down. I got up early, showered, and dressed before coming downstairs at 6:30. Undoubtedly, I will hit the wall later today, but other than my slightly bruised knee, I am getting a lot done.
Of course, at 8:30AM the afternoon nurse called to cancel.
Ironically, her knee hurts.
Thursday, April 2, 2009
Old (and I do mean OLD) friends
I have three close friends from my childhood, whom I’ve written about before. We have all known each other since we were little girls, 700 years ago. In fact, the connection goes back another generation as some of our parents also grew up together.
How is it that we could have stayed friends all these years through all of life’s ups and downs? Many other people I have known since childhood have drifted in and out of my life. What made the four of us stick together? Two of us went away to college in different cities and returned to the area at different times. We all had busy lives with kids and work. We settled down at different stages and our kids went to different schools at different times. Why has this worked?
Well, for one thing we know each other’s secrets. Keep your friends close and your old friends closer. Another is geography; we all stayed in the Bay Area. We live in four separate counties but easily within 20 miles of one another. Still, many other people fall into those categories but have drifted away over the years as lives change.
I think the biggest reason we have remained close friends is effort. All four of us have made the effort to remain in each other’s lives, no matter what differences there may be. Maggie is the youngest of all our kids by four or five years. When she was born and in the years since, these women have helped me in so many ways, often by taking me away for a few hours, putting a drink in my hand and reminding me of all the foibles of my youth until I laughed so hard I cried.
I was the last of the four to settle down. In the ten or so years after high school I went to college in Los Angeles, moved to Boston, came back to San Francisco for a while and then decided to go to law school and moved to Sacramento. I returned here for good in 1985.
In those same years the other three went to college, one going away for a short time but returning after a couple of years, and the other two staying put. Two of them, Nonie and Sharon got married within one week of each other in 1981, before I even started law school. By the time those weddings happened, though, Lori had been married about 5 years and had two girls, Jennifer and Julie. Lori was always the first to hit the “next stage.”
I remember playing with her baby daughter Jennifer in an apartment I had in San Francisco. She was maybe 8 or 10 months old. I remember it so clearly, because I was playing with the baby on the floor and not watching closely enough and Jennifer hit her head. Unhhh. That still gives me a sick feeling. Lori scooped up her baby and soothed her and me at the same time. She was calm and forgiving. She was a mom and even though I was not anywhere close to that myself, I was impressed. (For some reason she did not let me hold Jennifer again. Hmmmm.)
Apparently, there was not too much lasting damage to Jennifer. She grew up, became a teacher, got married and, as of three days ago, has two kids of her own. Her daughter Catalina (Lina for short) came home yesterday to meet her big brother Thomas. (When she reads this I will never get to hold her baby)
That means Lori is a grandmother twice over. Once again, she enters the next stage before the rest of us. Nonie, Sharon and I are very happy to call her grandma as often as possible. (Lori IS, after all, the oldest of the four of us.)
And though I’m nowhere close to that stage, I am once again impressed by Lori and the ease with which she moves into the next stage of life with gusto and shows all of us how easy it is. She is a fun grandma or “noni” as she is called. She is obviously completely smitten by and wrapped up in these grandchildren and we are happy for all of them.
She cannot shake us; we are those crazy friends of Noni’s that these children will make fun of for years to come.
How is it that we could have stayed friends all these years through all of life’s ups and downs? Many other people I have known since childhood have drifted in and out of my life. What made the four of us stick together? Two of us went away to college in different cities and returned to the area at different times. We all had busy lives with kids and work. We settled down at different stages and our kids went to different schools at different times. Why has this worked?
Well, for one thing we know each other’s secrets. Keep your friends close and your old friends closer. Another is geography; we all stayed in the Bay Area. We live in four separate counties but easily within 20 miles of one another. Still, many other people fall into those categories but have drifted away over the years as lives change.
I think the biggest reason we have remained close friends is effort. All four of us have made the effort to remain in each other’s lives, no matter what differences there may be. Maggie is the youngest of all our kids by four or five years. When she was born and in the years since, these women have helped me in so many ways, often by taking me away for a few hours, putting a drink in my hand and reminding me of all the foibles of my youth until I laughed so hard I cried.
I was the last of the four to settle down. In the ten or so years after high school I went to college in Los Angeles, moved to Boston, came back to San Francisco for a while and then decided to go to law school and moved to Sacramento. I returned here for good in 1985.
In those same years the other three went to college, one going away for a short time but returning after a couple of years, and the other two staying put. Two of them, Nonie and Sharon got married within one week of each other in 1981, before I even started law school. By the time those weddings happened, though, Lori had been married about 5 years and had two girls, Jennifer and Julie. Lori was always the first to hit the “next stage.”
I remember playing with her baby daughter Jennifer in an apartment I had in San Francisco. She was maybe 8 or 10 months old. I remember it so clearly, because I was playing with the baby on the floor and not watching closely enough and Jennifer hit her head. Unhhh. That still gives me a sick feeling. Lori scooped up her baby and soothed her and me at the same time. She was calm and forgiving. She was a mom and even though I was not anywhere close to that myself, I was impressed. (For some reason she did not let me hold Jennifer again. Hmmmm.)
Apparently, there was not too much lasting damage to Jennifer. She grew up, became a teacher, got married and, as of three days ago, has two kids of her own. Her daughter Catalina (Lina for short) came home yesterday to meet her big brother Thomas. (When she reads this I will never get to hold her baby)
That means Lori is a grandmother twice over. Once again, she enters the next stage before the rest of us. Nonie, Sharon and I are very happy to call her grandma as often as possible. (Lori IS, after all, the oldest of the four of us.)
And though I’m nowhere close to that stage, I am once again impressed by Lori and the ease with which she moves into the next stage of life with gusto and shows all of us how easy it is. She is a fun grandma or “noni” as she is called. She is obviously completely smitten by and wrapped up in these grandchildren and we are happy for all of them.
She cannot shake us; we are those crazy friends of Noni’s that these children will make fun of for years to come.
Wednesday, April 1, 2009
Outside the Box
Having a family member and especially a child with multiple disabilities has some obvious difficulties. Friends and strangers alike express concern for Maggie’s well being or offer blessings and prayers for her and for me, as her mom. Other than Maggie, I am probably the focus of most of the sympathy and prayers. It is kind and thoughtful, but a bit disconcerting at times, especially when it is coming from strangers. I’m not looking for sympathy, but I appreciate kind efforts to understand that there are differences in my life because of Maggie. The fact that strangers can only see the negative changes is not my concern.
My husband does not have to deal with the comments from strangers as much as I do. There are a couple of reasons for that. I spend more time out in the world with Maggie than he does and encounter people more often. Many of the comments come from other women, who may be more comfortable approaching a mom than a dad. In addition, Steve is much better at blowing people off than I am. He does not care what anyone thinks or says. That may sound like he is cold, but he is not. He is content and does not need input from strangers about his family. Though his experience with strangers is different, he does get the same amount of concern from friends and family. Steve, as dad, has all the same emotional pressures that I do. In addition, his freedom is enormously curtailed by our inability to travel or just take off for a few days. On top of that, he had to become the sole financial support for the family.
The impact on my sons’ lives was/is more subtle. Now that they are away at college, the day-to-day impact is less than it was. However, growing up with a sister as medically fragile and disabled as Maggie was had its challenges. They spent a lot of time in hospitals and doctor appointments. It seemed like Maggie had a medical crises on Tim’s birthday three or four times. They got a lot less attention from me. And medical issues? Please. Nothing could compare to what Maggie was going through so scraped knees and turned ankles were not treated with the same concern they might have been. The boys were shipped off to “visit” cousins a lot. The family was great at welcoming them and making it fun, but they knew there was no one at home to watch them. As they got older, they were frightened for Maggie.
Maggie’s disabilities became a central issue for Eddie in grammar school. Actually, the issues were not so much for him as for the teachers at the school. The slightest bit of misbehavior or sadness was immediately attributed to his “situation”. At a parent teacher conference, I was frequently told, “you know he HAS a disabled sister.” (No! really! I had no idea.) I offered to bring Maggie in and explain her differences to the students (and faculty). No thank you, not interested. I ignored that for a while thinking these women would wise up. When they did not, and I heard again about his disabled sister I said to the nun, “Well, yes sister, but we’re KEEPING her, so what do you suggest?” I was the one who wised up. I realized they had put Eddie in a box where he didn’t belong and were not the least bit interested in letting him out or learning anything about it.
Shortly after that, we switched schools. Best thing we ever did, for the boys and for all of us. We went to another school (also a Catholic school) where they jumped at the chance to learn about Maggie and let the boys be little boys. The school was supportive and helpful, not closed minded and judgmental. Soon after moving to the new school, both boys realized that when they were pushing Maggie around the schoolyard, they were far more likely to get the attention of the girls in their class. In their adolescence, we referred to Maggie as a “chick magnet”, a role Maggie loved.
As the boys got older they were far more cognizant of the dangers of Maggie’s medical conditions, but it just became part of the fabric of our lives. They would hop into her bed in the ICU, read her stories, and watch TV. They would listen to and understand what the doctors said and figure out how long until we were home and things would return to “normal.” However, “normal” in this house is different from normal in other houses. They were the only ones in high school to learn to drive using a wheelchair van. They were the only ones whose friends were pressed into service moving medical equipment when they came to visit. They were the only ones whose parents were ALWAYS home.
Then and now, Maggie is just their little sister. The differences in her life and theirs are part of the men they have become.
As I’ve said a million times, different does not mean worse.
My husband does not have to deal with the comments from strangers as much as I do. There are a couple of reasons for that. I spend more time out in the world with Maggie than he does and encounter people more often. Many of the comments come from other women, who may be more comfortable approaching a mom than a dad. In addition, Steve is much better at blowing people off than I am. He does not care what anyone thinks or says. That may sound like he is cold, but he is not. He is content and does not need input from strangers about his family. Though his experience with strangers is different, he does get the same amount of concern from friends and family. Steve, as dad, has all the same emotional pressures that I do. In addition, his freedom is enormously curtailed by our inability to travel or just take off for a few days. On top of that, he had to become the sole financial support for the family.
The impact on my sons’ lives was/is more subtle. Now that they are away at college, the day-to-day impact is less than it was. However, growing up with a sister as medically fragile and disabled as Maggie was had its challenges. They spent a lot of time in hospitals and doctor appointments. It seemed like Maggie had a medical crises on Tim’s birthday three or four times. They got a lot less attention from me. And medical issues? Please. Nothing could compare to what Maggie was going through so scraped knees and turned ankles were not treated with the same concern they might have been. The boys were shipped off to “visit” cousins a lot. The family was great at welcoming them and making it fun, but they knew there was no one at home to watch them. As they got older, they were frightened for Maggie.
Maggie’s disabilities became a central issue for Eddie in grammar school. Actually, the issues were not so much for him as for the teachers at the school. The slightest bit of misbehavior or sadness was immediately attributed to his “situation”. At a parent teacher conference, I was frequently told, “you know he HAS a disabled sister.” (No! really! I had no idea.) I offered to bring Maggie in and explain her differences to the students (and faculty). No thank you, not interested. I ignored that for a while thinking these women would wise up. When they did not, and I heard again about his disabled sister I said to the nun, “Well, yes sister, but we’re KEEPING her, so what do you suggest?” I was the one who wised up. I realized they had put Eddie in a box where he didn’t belong and were not the least bit interested in letting him out or learning anything about it.
Shortly after that, we switched schools. Best thing we ever did, for the boys and for all of us. We went to another school (also a Catholic school) where they jumped at the chance to learn about Maggie and let the boys be little boys. The school was supportive and helpful, not closed minded and judgmental. Soon after moving to the new school, both boys realized that when they were pushing Maggie around the schoolyard, they were far more likely to get the attention of the girls in their class. In their adolescence, we referred to Maggie as a “chick magnet”, a role Maggie loved.
As the boys got older they were far more cognizant of the dangers of Maggie’s medical conditions, but it just became part of the fabric of our lives. They would hop into her bed in the ICU, read her stories, and watch TV. They would listen to and understand what the doctors said and figure out how long until we were home and things would return to “normal.” However, “normal” in this house is different from normal in other houses. They were the only ones in high school to learn to drive using a wheelchair van. They were the only ones whose friends were pressed into service moving medical equipment when they came to visit. They were the only ones whose parents were ALWAYS home.
Then and now, Maggie is just their little sister. The differences in her life and theirs are part of the men they have become.
As I’ve said a million times, different does not mean worse.
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