I read a lot of books about time travel and alternative timelines and parallel universes and the like. I don't really believe in any of them, but thinking about them fascinates me and often makes for some very good reading. Usually, though, I don't put such thoughts to use on my own life, or Janey's life. This weekend, I did.
I saw several pictures on Facebook on Saturday morning of kids preparing to take the Boston exam school test. They were kids that started kindergarten with Janey, and it hit me that if Janey had stayed in their grade, if Janey had developed typically, she would have been taking the test on Saturday. The test determines if you get into one of Boston's exam schools. Janey's brother Freddy went to Boston Latin School, as did my husband Tony (William also got in, but chose not to go). Freddy and Tony had a great experience with the school. It's a special place---the oldest school in America (founded in 1635!) And it's so far removed from any educational route Janey is taking that it might as well be on the moon.
I let myself spend a few minutes, after seeing those pictures (which were great to see, and I am truly happy and excited to think of kids I know Janey's age going to Latin), what it would be like if Janey were "normal". More specifically, what would this past weekend have looked like? Well, we would be nervous about the test. We'd have taken her there early, to stand in line. She would have had to go in herself, as the boys did, and we would have gone home and thought about her. After the test, we would have talked about it, and maybe gone out to lunch. Then, we would have done what we did in the regular timeline---picked up both Freddy and William at the train station, both of them visiting from college for a bit. She would have listened to their college stories, and told them her own exam stories.
As I write this, I am crying. Usually, I don't mourn the Janey that could have been. It's a useless thing to do. That Janey doesn't exist. I love the Janey I do have. But somehow, I got a vision of that Janey, what she would look like, talk like, be like. And it made me heartbroken, for a few minutes, thinking about all she is missing. She is missing so much of life. She won't just not go to Latin. She won't go to college. She won't get married. She won't have children. Her life is not going to have the milestones, the joys, that so many people can take for granted. And I usually would pipe in here, reminding myself and others that she also won't have some of the heartbreaks life brings, but I don't feel like it, right now. Those heartbreaks are worth it, for the great joys that the things she will miss can bring.
And why? That's another thing I don't usually dwell on. But why is Janey autistic, and severely developmentally delayed? What happened? I have no shortage of possible reasons, but that doesn't really help. Why doesn't she progress in the way that most kids with autism seem to progress? Why, even in her autism program, does she seem so far behind? What have I done wrong? I know the answer is that it's not me, but of course, I ask that anyway, in private. And I guess here, in public.
Most of the time, I can rejoice in the Janey I do have. But sometimes, I feel life has been very unfair to her. Not to me. To her. I wish I could say "But she doesn't know any differently! She's happy as she is!" But she isn't happy, much of the time. She's not happy at all so often. She suffers, emotionally and sometimes physically. She might not know specifically what she is missing out on, but I think she does see that life is more frustrating to her than it is for many others.
And now I will bury these thoughts again for a while. There are some things you can't think about very often.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label Boston Latin School. Show all posts
Showing posts with label Boston Latin School. Show all posts
Monday, November 9, 2015
Tuesday, June 9, 2015
Part 8----Healing Slowly
Today, the surgeon said Janey's bowel sounds were NORMAL---a wonderful thing to hear. It was the first time in two weeks that has been the case. It was also the first time we heard the work "discharge" in terms of her going home, not with a date attached, but she said something like "Now we can think about discharge someday!" We are feeling cautiously optimistic, although the surgeon made sure we understood it's still a long, long road to recovery, and Janey would not be herself for a long, long time. She said Janey has had one of the most serious conditions that a child patient can have in a hospital, in terms of length of stay and time to recover. But we are finally talking recovery, not just crisis after crisis.
Maybe with the getting somewhat better, Janey is acting more unhappy. When she was so sick she could barely move, she didn't seem as sad as she does now. I can think of only two times she has smiled since she's been in the hospital. She spends a lot of time just saying "Mama! Daddy!" and making a sad whining sound. It's hard to hear. The big challenge is knowing how much of this is pain. I feel like she's shown us that she has a huge tolerance for pain, and doesn't show it in normal ways. So it's up to us to figure that out. She is able to have morphine when the pain gets bad, but morphine slows everything down and also people develop a tolerance to it after a while, so you want to use it sparingly. We have seen the tolerance already, in that a dose used to get her to sleep almost instantly, and now it seems to help much less.
We have been trying to get Janey up and walking as much as we can, but walking tires her out to an amazing extent. We walk to the playroom, which is just a short walk about 10 rooms down, and once there, she is very, very tired, and slouches down in a chair alarmingly. Walking back, she is even more tired and tries to go into other rooms and sleep in other patient's rooms. It is hard to believe this is the same little girl who had endless energy and never, ever stopped jumping while watching TV.
Eating is the other challenge. Janey is finally on a non-restricted diet. She can eat anything she wants. She is still getting the IV nutrition around the clock, but of course we want to get off that eventually. We got her to eat more lunch today than we had in a while----about 10 kernels of corn, 10 bites of tomato chucks from salsa, a couple thin slivers of salami, a bite of cookie, a few bites of bread---actually a huge meal for her! Eating is an area where I think a misunderstanding of autism is common. Someone commented it's hard to get kids eating again that are picky eaters to start with, assuming that Janey would be one. But she isn't. She likes to eat a very lot, and eats a huge variety of foods. As we have found to be the case here, everyone listened to what we said. They put Janey on adult meals, so we can order more exotic foods than the child's menu would allow.
My biggest fears lately are about how this experience is going to change Janey, to maybe take away the things that were her sources of joy. Seeing her have trouble even walking, or seeing her not enjoy food--it's sad. Those were her "normal" joys. I have to admit I've had some moments of thinking this all just isn't fair. Within a year, Janey has first been hospitalized for autism-related issues for a long time, and now, for physical health reasons. Wouldn't one or another be enough? I try hard not to get discouraged, to feel put-upon, to cry much, at least until I have a day alone, but at times, I am having a hard time with it all.
The big bright spot, one I should have probably opened with, is that last night I was able to get away for a few hours to see Janey's brother Freddy graduate from Boston Latin School, class of 2015. It was a wonderful ceremony, and I am so proud of my newest high school graduate. Tony had to stay here, which caused me some tears, but my parents, Freddy's brother William, his aunt and uncle and some dear family friends who have known Freddy from the start were there to cheer for him. It is not how I ever pictured his graduation night being, but life is often not what we pictured. Watching him get his diploma was one of those moments when life was more than I ever expected. And Janey is getting better. She will get better.
Maybe with the getting somewhat better, Janey is acting more unhappy. When she was so sick she could barely move, she didn't seem as sad as she does now. I can think of only two times she has smiled since she's been in the hospital. She spends a lot of time just saying "Mama! Daddy!" and making a sad whining sound. It's hard to hear. The big challenge is knowing how much of this is pain. I feel like she's shown us that she has a huge tolerance for pain, and doesn't show it in normal ways. So it's up to us to figure that out. She is able to have morphine when the pain gets bad, but morphine slows everything down and also people develop a tolerance to it after a while, so you want to use it sparingly. We have seen the tolerance already, in that a dose used to get her to sleep almost instantly, and now it seems to help much less.
We have been trying to get Janey up and walking as much as we can, but walking tires her out to an amazing extent. We walk to the playroom, which is just a short walk about 10 rooms down, and once there, she is very, very tired, and slouches down in a chair alarmingly. Walking back, she is even more tired and tries to go into other rooms and sleep in other patient's rooms. It is hard to believe this is the same little girl who had endless energy and never, ever stopped jumping while watching TV.
Eating is the other challenge. Janey is finally on a non-restricted diet. She can eat anything she wants. She is still getting the IV nutrition around the clock, but of course we want to get off that eventually. We got her to eat more lunch today than we had in a while----about 10 kernels of corn, 10 bites of tomato chucks from salsa, a couple thin slivers of salami, a bite of cookie, a few bites of bread---actually a huge meal for her! Eating is an area where I think a misunderstanding of autism is common. Someone commented it's hard to get kids eating again that are picky eaters to start with, assuming that Janey would be one. But she isn't. She likes to eat a very lot, and eats a huge variety of foods. As we have found to be the case here, everyone listened to what we said. They put Janey on adult meals, so we can order more exotic foods than the child's menu would allow.
My biggest fears lately are about how this experience is going to change Janey, to maybe take away the things that were her sources of joy. Seeing her have trouble even walking, or seeing her not enjoy food--it's sad. Those were her "normal" joys. I have to admit I've had some moments of thinking this all just isn't fair. Within a year, Janey has first been hospitalized for autism-related issues for a long time, and now, for physical health reasons. Wouldn't one or another be enough? I try hard not to get discouraged, to feel put-upon, to cry much, at least until I have a day alone, but at times, I am having a hard time with it all.
The big bright spot, one I should have probably opened with, is that last night I was able to get away for a few hours to see Janey's brother Freddy graduate from Boston Latin School, class of 2015. It was a wonderful ceremony, and I am so proud of my newest high school graduate. Tony had to stay here, which caused me some tears, but my parents, Freddy's brother William, his aunt and uncle and some dear family friends who have known Freddy from the start were there to cheer for him. It is not how I ever pictured his graduation night being, but life is often not what we pictured. Watching him get his diploma was one of those moments when life was more than I ever expected. And Janey is getting better. She will get better.
Saturday, June 6, 2015
Janey's burst appendix story---Part Six
When we left you in this continuing saga, Janey was off getting a CT scan to look for abscesses. The CT scan was quick, and Tony went out to get a bite to eat when one of the surgeons came back to tell me that yes, it looked like Janey has multiple abscesses. That wasn't exactly what we wanted to hear, but I am so glad they did look for them. Her head surgeon came in a bit later and explained things to us more. Janey had 5 abscesses. She was going to need interventional radiology to put drains in them. At the same time this was done, they would put in a PICC line to be able to give her nutrition, IV medication and draw blood, without having to do lots more IVs.
Janey was taken down for the procedure about 2, strangely, a week right to the hour after she had the original surgery. We signed more consents, and left as she was being put under, back up to her room to sleep (although I couldn't sleep).
The big question last night was whether I would go to her brother Freddy's Prize Night. The night is the second biggest night in the six years at Boston Latin School, the school Freddy graduates from on Monday. I have looked forward to the night for years, but never dreamt I would have to decide whether to go while Janey was in surgery. After talking to the surgeon and to the nurses, I did decide to go. Tony stayed here and promised to keep in touch with me by text, which he did.
The night was wonderful. It was held at an old church building on the campus of Harvard, a beautiful venue. There was amazing music played by the string orchestra of the school, including a sad piece which of course set me to crying quite a bit, partly about Janey and partly from thinking of an era being over with Freddy. My emotions right there were about as intense as emotions get. Watching the prizes get given out was so interesting. Everyone got a prize of some kind, and I was very proud that Freddy got two, both connected to his declamation (speech giving) skills.
Then it was back to reality. Janey had come back from surgery while I was gone. I saw her drains, which are a little scary to look at but not that bad. They were able to drain 4 of the abscesses with 3 different drains. One was too surrounded by bowel to be able to drain. Hopefully that one will resolve on its own. Janey was doing remarkably well.
Today, Janey isn't feeling quite as good. Her fever is up a bit, which was sort of half expected, and she was in a bit of pain. They authorized clear liquids, but she had just a sip of apple juice and later threw up. Her stomach just isn't ready yet.
I have to say here how wonderful almost everyone at this hospital is. The nurses on our floor are just plain amazing. They are so kind, they care so obviously for Janey, they are knowledgable and competent and just...wow. The surgeons have also been great, especially the surgeon who did the original surgery on Janey. She listened to us, answered all our questions so well, and even remembered Freddy and answered me seriously and truthfully about going to his prize night.
And---Janey has been amazing also. Overall, I can say there's been many times she's gotten far more upset over us saying no to a trip to the ice cream store than she has over major things here like having an IV put in. She is alert and watches everything, and is learning new terms. Today, she said "Want to call the nurse?" as I picked up the control with the nurse button, and she has started calling her stomach area her "belly" as she has heard them do.
Sleep is the toughest thing. We got some last night, but I am living in a constant state of tiredness. Often, also in hungriness, as I don't eat the room since Janey can't, and it can be hard to find time to sneak out and get something to eat. This may be the most effective diet I've ever been on.
Writing in this blog and hearing from all of you truly is keeping me going. I need this writing more than anything. I don't think I'd ever remember these days clearly or be able to work through them in my head without it, and it's a fantastic bonus to be able to share Janey's story. I hope none of you ever have to have your child with autism in the hospital for an extended time (or any child at all!) but I hope if anyone does, my writing will help a little. So I will close for now, until part seven......
Janey was taken down for the procedure about 2, strangely, a week right to the hour after she had the original surgery. We signed more consents, and left as she was being put under, back up to her room to sleep (although I couldn't sleep).
The big question last night was whether I would go to her brother Freddy's Prize Night. The night is the second biggest night in the six years at Boston Latin School, the school Freddy graduates from on Monday. I have looked forward to the night for years, but never dreamt I would have to decide whether to go while Janey was in surgery. After talking to the surgeon and to the nurses, I did decide to go. Tony stayed here and promised to keep in touch with me by text, which he did.
The night was wonderful. It was held at an old church building on the campus of Harvard, a beautiful venue. There was amazing music played by the string orchestra of the school, including a sad piece which of course set me to crying quite a bit, partly about Janey and partly from thinking of an era being over with Freddy. My emotions right there were about as intense as emotions get. Watching the prizes get given out was so interesting. Everyone got a prize of some kind, and I was very proud that Freddy got two, both connected to his declamation (speech giving) skills.
Then it was back to reality. Janey had come back from surgery while I was gone. I saw her drains, which are a little scary to look at but not that bad. They were able to drain 4 of the abscesses with 3 different drains. One was too surrounded by bowel to be able to drain. Hopefully that one will resolve on its own. Janey was doing remarkably well.
Today, Janey isn't feeling quite as good. Her fever is up a bit, which was sort of half expected, and she was in a bit of pain. They authorized clear liquids, but she had just a sip of apple juice and later threw up. Her stomach just isn't ready yet.
I have to say here how wonderful almost everyone at this hospital is. The nurses on our floor are just plain amazing. They are so kind, they care so obviously for Janey, they are knowledgable and competent and just...wow. The surgeons have also been great, especially the surgeon who did the original surgery on Janey. She listened to us, answered all our questions so well, and even remembered Freddy and answered me seriously and truthfully about going to his prize night.
And---Janey has been amazing also. Overall, I can say there's been many times she's gotten far more upset over us saying no to a trip to the ice cream store than she has over major things here like having an IV put in. She is alert and watches everything, and is learning new terms. Today, she said "Want to call the nurse?" as I picked up the control with the nurse button, and she has started calling her stomach area her "belly" as she has heard them do.
Sleep is the toughest thing. We got some last night, but I am living in a constant state of tiredness. Often, also in hungriness, as I don't eat the room since Janey can't, and it can be hard to find time to sneak out and get something to eat. This may be the most effective diet I've ever been on.
Writing in this blog and hearing from all of you truly is keeping me going. I need this writing more than anything. I don't think I'd ever remember these days clearly or be able to work through them in my head without it, and it's a fantastic bonus to be able to share Janey's story. I hope none of you ever have to have your child with autism in the hospital for an extended time (or any child at all!) but I hope if anyone does, my writing will help a little. So I will close for now, until part seven......
Subscribe to:
Posts (Atom)