I survived the sleep specialist yesterday.
It was the typical story when I try to get an early morning appointment so Elli doesn't miss an entire day of school. We were the 2nd appt of the day, and the first one started late. We started half an hour late, and then went over our 1-hour allottment because Elli's story isn't a quick one.
All in all, I walked away with mixed feelings.
The good news is that everything we are doing is good. We have a consistent, regular bedtime. We have a bedtime routine. We put each child to bed in their bed, and they have learned to fall asleep on their own in that bed. They don't fall asleep to the TV or to music or anything else that will eventually shut off (this can cause middle-of-the-night waking and inability to get back to sleep because the sleep environment changed and isn't the way it was when they normally fall asleep).
The bad news is that there really isn't much else we can try. He had only two suggestions, and they have no guarantee of making any difference in her ability to get back to sleep after waking.
He recommended, after looking at her sleep diary, that we push her bedtime back half an hour. He said she may not be physiologically ready for sleep at 8pm, so if we put her down at 8:30, that should, in theory, reduce the time she lays in bed awake. I like to spend some time with her at night anyway, so we'll do the normal bedtime routine, and then when the other two go to bed, I'll take her out to the family room with me and hang out for a half hour until 8:30.
Elli was all in favor of this development, of course. How many times does a doctor tell you that you are going to bed too early, after all!? She had a ball watching American Idol auditions last night, kicking and giggling at the awful singing and listening very carefully to the good stuff. We really enjoyed spending that time together, Elli and her dad and I, laughing and snuggling. I think this is going to be a great development for all of us. I've really missed her this year, now that she's at school all day. So this evening time is reallly special for all three of us.
The other suggestion is to wait a good hour when she wakes at night. He really wanted us to give her a long chance to go back to sleep herself before we go in to her room. He suspects that those nights she wakes early she just got enough sleep and is ready to go for the day. If she is sitll awake after an hour, then go in and tell her she needs to be quiet when she's the first one up and move her somewhere else if necessary. He said at that point, she isn't likely to return to sleep, so moving her wouldn't be counterproductive, though he said not to turn on lights and music and all that either. This would just reinforce to her body that 4am is a fine time to get up!
So my worst fears were not realized -- he said we're doing a great job with her. He also said that on the whole, if the 3 weeks we tracked are a good snapshot of reality, she is really only waking up in the night once a week. That isn't bad enough to indicate a medical problem (which is good!). I also suspect that two of the 3 wakings she had were because she was coming down with a cold. I think she had a sore throat that woke her. So I think I'm going to try giving her Tylenol when I move her out of her bedroom in the future -- if her throat hurts, maybe getting some relief would help her get some sleep after all. And if not, Tylenol once a week for no reason isn't going to hurt her.
But we didn't get any magic bullets either. We're basically stuck with the situation as it is. I guess God really wants me to get better at handling stress in the middle of the night when I'm tired and groggy and extra-specially impatient!
Jan 31, 2007
Sympathy or Detachment?
As I've written about before, I'm working with a sub-committee of our local children's hospital's Board of Trustees to help develop core values for the hospital.
Before we started, we discussed what core values actually are. According to an article on refresher.com, "Back to the Beginning - Core Values" by Rick Sidorowicz,
Last night five of the eight groups presented, including mine. We heard from researchers, residents, administrators and the business side of the hospital, volunteers, and families (I presented, along with my colleague Kay, what the families wanted to see as core values). It was fascinating to hear each group's unique perspective, and yet to see how much we agreed on the basics.
One theme that we heard over and over, that is of particular interest to families, is the idea of empathy from hospital staff. Three of the groups, residents, administrators, and volunteers, talked about treating the patient as if they were their own, or trying to experience the hospital the way a patient or family does, or, which was particularly insightful, walking alongside families but acknowledging that you can never walk in their shoes.
I first have to confess a significant bias in the perspective we presented as families. Almost all of the families we talked to about this have children with chronic, ongoing medical conditions. These families are in and out of the hospital regularly and have extensive experience working with the system and advocating for their children. They have very valuable insights from this depth of experience.
However, 70% of the families who use our hospital, only come one time. Their child needs ear tubes, or rehydration, or casting from an injury, or IV antibiotics for a particularly bad infection. Only 30% of families return, and an even smaller percentage are what we like to call ourselves: "frequent fliers." (If only there were some sort of benefit we could acrue from all this hospital experience! But that's beside the point.)
So we really don't know how the majority of families experience the hospital, or what they think about sympathy and professionalism. What we do know is that families differ in the level of sympathy or empathy they desire from hospital staff.
Kay, my colleague, is the daughter of a doctor and has a congenital condition of her own. So she experienced the "never treat your own family because you're too emotionally involved" perspective of medicine. This has colored her approach to the issue of empathy in a dramatic way. She really values a marked distance from her and her child's physicians. As she said last night in the meeting,
The chief of surgery is leading one of the sub-groups that will present at the next meeting, the faculty physicians of the hospital. He expressed very well the other side of the story:
But at the same time, I have always been a little curious about how the medical staff approaches us -- what space are they coming from? Do they love their jobs and get along well with their coworkers? Was there something going on in their personal life that made that one really grumpy and short with us? What dynamic is going on at the nurses' station? Are they watching us, and if so, what are they seeing and how is it affecting how and what they say to us? And most importantly, what difference would knowing this make to me?
Now that I work at the hospital a few hours a week, I've begun to develop relationships with some of the people who have treated, or still treat, my daughter, that are more of a coworker or even a friend relationship. I have begun to learn some of those things I always wondered about -- this doctor has children the same age as mine and loves to tell stories about them, this nurse has really struggled to make ends meet for her boys after her marriage fell apart years ago and is putting herself through school to get a better-paying job, this administrator also has a son with autism, this team simply doesn't work well with anyone else and their attitudes toward patients are still way back in the Dark Ages. And it goes on.
I have to say... I liked it better when I didn't know. I have learned that I don't really want to be friends with my doctor or my child's doctor, though I really value a great working relationship in which we communicate well and the doctor knows me well enough to know that if I call, there's a darn good reason, and that my observations are worth noting. I really don't want to know about all the office politics -- I want to be peacefully oblivious to all the yucky stuff and assume that everyone is totally focused on caring for my child when they walk into our room.
And for the most part, I believe these people do just that. They learn to drop the workplace and home baggage at the patient's door and focus completely on the patient and the situation at hand.
And in my opinion, that is how it should be. Recognize that I am unique, and do your best to see how I want to relate to you and the other people on the team. Walk along side me without patronizing me or pretending to know what I'm going through, offer the skills and knowledge and experience in treatment that you have, empower me to make good decisions for myself or my child, and as much as is possible, leave your life and workplace baggage at the door.
Before we started, we discussed what core values actually are. According to an article on refresher.com, "Back to the Beginning - Core Values" by Rick Sidorowicz,
"Values are 'core' "if they are so fundamental and deeply held that they will change seldom, if ever." Values are core if they would be held even if they were a competitive disadvantage in certain circumstances.Core values are deep, very deep. They are extremely important. Core values rarely change in light of market changes. On the other hand it is more likely that the organization will change markets if necessary to remain true to its core values."
The committee asked eight different groups from around the hospital to discuss amongst themselves, and then present to the committee, what they believed the hospital's core values should be, from their unique perspective.
Last night five of the eight groups presented, including mine. We heard from researchers, residents, administrators and the business side of the hospital, volunteers, and families (I presented, along with my colleague Kay, what the families wanted to see as core values). It was fascinating to hear each group's unique perspective, and yet to see how much we agreed on the basics.
One theme that we heard over and over, that is of particular interest to families, is the idea of empathy from hospital staff. Three of the groups, residents, administrators, and volunteers, talked about treating the patient as if they were their own, or trying to experience the hospital the way a patient or family does, or, which was particularly insightful, walking alongside families but acknowledging that you can never walk in their shoes.I first have to confess a significant bias in the perspective we presented as families. Almost all of the families we talked to about this have children with chronic, ongoing medical conditions. These families are in and out of the hospital regularly and have extensive experience working with the system and advocating for their children. They have very valuable insights from this depth of experience.
However, 70% of the families who use our hospital, only come one time. Their child needs ear tubes, or rehydration, or casting from an injury, or IV antibiotics for a particularly bad infection. Only 30% of families return, and an even smaller percentage are what we like to call ourselves: "frequent fliers." (If only there were some sort of benefit we could acrue from all this hospital experience! But that's beside the point.)
So we really don't know how the majority of families experience the hospital, or what they think about sympathy and professionalism. What we do know is that families differ in the level of sympathy or empathy they desire from hospital staff.
Kay, my colleague, is the daughter of a doctor and has a congenital condition of her own. So she experienced the "never treat your own family because you're too emotionally involved" perspective of medicine. This has colored her approach to the issue of empathy in a dramatic way. She really values a marked distance from her and her child's physicians. As she said last night in the meeting,
"When I come into the hospital with my child, I have my thick skin on. And I don't want anyone to peel that away. I want you to be professional, and I want you to treat me humanely, but I don't want your sympathy. I don't want you to engage in my life. I have family and friends and church and other supports for that. Just be our doctors!"
The chief of surgery is leading one of the sub-groups that will present at the next meeting, the faculty physicians of the hospital. He expressed very well the other side of the story:"We are people, and we are in this field because we care. I have gotten more hugs from families and patients, and I'm receptive to that if that's the way they feel. We certainly have families that interact with us almost in an anticeptic way, there's a transaction that takes place, and that's the way they want it. But especially when we interact with a family many times over a period of years, we do get attached to them. The key is recognizing how a family wants to interact, and responding to that. And each of us do go into each encounter with our antenna up!"Our director of pediatric residency explained his group's perspective. His residents wrote their core values themselves, and he presented them exactly the way the residents stated them.
"My residents are really new at this. They are just learning how to walk! They haven't learned how to detach from a situation yet, in many cases. So they are coming at this from this position in their careers. As they discussed the quality of care of their patients, they couldn't think of a higher level of quality to deliver than that which they would demand for their own children. So that's where the statement, "Treat the patient like he/she is one of your own" came from. It doesn't refer to a depth of relationship, but rather to the level of priority and care provided."For myself, hearing all these differing perspectives on this was very helpful. I have always put my thick skin on when in the hospital too -- I plaster a smile on my face when I don't know how to process something and need time, I have never hugged a doctor, and I hate crying in public. I do my best to be strong for my daughter and save my emotional outbursts and working through of things for times when I can be alone or talk it through with my husband, out of ear- and eye-shot of everyone else.
But at the same time, I have always been a little curious about how the medical staff approaches us -- what space are they coming from? Do they love their jobs and get along well with their coworkers? Was there something going on in their personal life that made that one really grumpy and short with us? What dynamic is going on at the nurses' station? Are they watching us, and if so, what are they seeing and how is it affecting how and what they say to us? And most importantly, what difference would knowing this make to me?Now that I work at the hospital a few hours a week, I've begun to develop relationships with some of the people who have treated, or still treat, my daughter, that are more of a coworker or even a friend relationship. I have begun to learn some of those things I always wondered about -- this doctor has children the same age as mine and loves to tell stories about them, this nurse has really struggled to make ends meet for her boys after her marriage fell apart years ago and is putting herself through school to get a better-paying job, this administrator also has a son with autism, this team simply doesn't work well with anyone else and their attitudes toward patients are still way back in the Dark Ages. And it goes on.
I have to say... I liked it better when I didn't know. I have learned that I don't really want to be friends with my doctor or my child's doctor, though I really value a great working relationship in which we communicate well and the doctor knows me well enough to know that if I call, there's a darn good reason, and that my observations are worth noting. I really don't want to know about all the office politics -- I want to be peacefully oblivious to all the yucky stuff and assume that everyone is totally focused on caring for my child when they walk into our room.
And for the most part, I believe these people do just that. They learn to drop the workplace and home baggage at the patient's door and focus completely on the patient and the situation at hand.
And in my opinion, that is how it should be. Recognize that I am unique, and do your best to see how I want to relate to you and the other people on the team. Walk along side me without patronizing me or pretending to know what I'm going through, offer the skills and knowledge and experience in treatment that you have, empower me to make good decisions for myself or my child, and as much as is possible, leave your life and workplace baggage at the door.
Jan 29, 2007
Finally... A Knitting Post
Believe it or not, I have been knitting, even though I haven't written about it in months.
I did take a brief hiatus in January when the fatigue of pregnancy, the holiday madness, and a second cold in the same month laid me flat on my back. A couple weeks later, I was coherent enough at night to pick the needles up again and actually follow directions.
Well, sort of. I successfully completely a pair of fuzzy feet for my sister, and they were only about 1 1/2 weeks late. We had fun felting them here at my house one evening. I haven't heard anything and forgot to take pictures, so I'm going on the blissful assumption that all is well with them. (Of course, I haven't asked about them either!)
Then I hit the Christmas stocking for my niece again. My sister is a very understanding person, and is totally fine with this gift being months late. (Of course it helps that my niece is only a year old and therefore doesn't know that her aunt is horribly delinquent!)
I finished the body of the stocking (the red part). I knit it in 8 squares, and then sewed the squares together to form what I like to think of as a pointettia pattern in the center of the front and back.
Then I began to run into trouble. Somehow, in the instructions for picking up the stitches to begin the white part, the cuff, I did it exactly backwards. I didn't figure this out until I had knit 3 never-ending inches of stockinette (the flat white knitting immediately above the red section), and then knit about an inch of the fold-down pattern. In a sudden moment of clarity while I was out of town and away from the children -- a rare moment of peaceful daytime knitting -- I realized that the side that was supposed to fold down on the outside of the stocking was in fact inside-out.
Rather than rip out the entire white cuff, and repeat the eternal 3 inches of stockinette again, I ripped about an inch of it out, turned directions (it won't show because the cuff will fold down over it), and knit correctly til the top. I'm now making progress again and here you can get an idea how it will look once I finish about 3.5 inches of the lace pattern. (I use the term "lace" loosely here, for all those highly-experienced lace knitters who look at this and scoff.)
Once I finish the white cuff, I'll pick up (hopefully the right way this time) more red at the bottom of the stocking and knit the heel and toe. I'm guessing this will be the boring part -- as I recall there isn't much of a pattern here. But this project has shown me that I can only handle so much variety without getting totally lost!
Despite the screw-ups, I'm really enjoying this project. It has enough variety to keep my interest. What's best about a Christmas stocking? You only have to knit one!
I did take a brief hiatus in January when the fatigue of pregnancy, the holiday madness, and a second cold in the same month laid me flat on my back. A couple weeks later, I was coherent enough at night to pick the needles up again and actually follow directions.
Well, sort of. I successfully completely a pair of fuzzy feet for my sister, and they were only about 1 1/2 weeks late. We had fun felting them here at my house one evening. I haven't heard anything and forgot to take pictures, so I'm going on the blissful assumption that all is well with them. (Of course, I haven't asked about them either!)
Then I hit the Christmas stocking for my niece again. My sister is a very understanding person, and is totally fine with this gift being months late. (Of course it helps that my niece is only a year old and therefore doesn't know that her aunt is horribly delinquent!)
I finished the body of the stocking (the red part). I knit it in 8 squares, and then sewed the squares together to form what I like to think of as a pointettia pattern in the center of the front and back.
Then I began to run into trouble. Somehow, in the instructions for picking up the stitches to begin the white part, the cuff, I did it exactly backwards. I didn't figure this out until I had knit 3 never-ending inches of stockinette (the flat white knitting immediately above the red section), and then knit about an inch of the fold-down pattern. In a sudden moment of clarity while I was out of town and away from the children -- a rare moment of peaceful daytime knitting -- I realized that the side that was supposed to fold down on the outside of the stocking was in fact inside-out.
Rather than rip out the entire white cuff, and repeat the eternal 3 inches of stockinette again, I ripped about an inch of it out, turned directions (it won't show because the cuff will fold down over it), and knit correctly til the top. I'm now making progress again and here you can get an idea how it will look once I finish about 3.5 inches of the lace pattern. (I use the term "lace" loosely here, for all those highly-experienced lace knitters who look at this and scoff.)
Once I finish the white cuff, I'll pick up (hopefully the right way this time) more red at the bottom of the stocking and knit the heel and toe. I'm guessing this will be the boring part -- as I recall there isn't much of a pattern here. But this project has shown me that I can only handle so much variety without getting totally lost!
Despite the screw-ups, I'm really enjoying this project. It has enough variety to keep my interest. What's best about a Christmas stocking? You only have to knit one!
Jan 28, 2007
Coming Up This Week
Sleep Clinic Appointment: I take Elli to see a team of people who specialize in sleep problems on Tuesday morning. I've been keeping a sleep journal all month, recording when she wakes and sleeps. I'm really hoping they can give us some suggestions or explanations for why she can't go back to sleep when she awakes. I know she isn't alone in this struggle -- many of the parents of kids with CP tell me they have the same issues. I suspect a lot of it has to do with lack of physical exertion during the day.
However, I am now a little anxious about this appointment. I just got a letter last week stating that the team includes a behavioral psychologist. This isn't the first time we've seen a team that includes one, but always before I knew we didn't have any issues pertinent to them. This time I am not so sure. I'm also not sure how I'm going to handle any questions about how I've tried to handle Elli's insomnia. Are they going to ask if we've handled it as a discipline issue? (We have.) I would think they'd want to know this, but I'm not comfortable detailing all the ways we've tried to discipline her, given today's prevailing attitudes towards disciplining children.
Presentation to Top Level Execs at Children's: Our children's hospital chairman of the board, a lovely man who has been a long-time champion of family-centered care, is working with the group in charge of long-term planning for the hospital to determine what the hospital's core values should be. Core values are guiding principles that don't change over time and that drive all of the hospital's decisions, even when they aren't in the best business interest of the organization. Examples include integrity, quality, and trust.
He asked eight different groups within the hospital, including residents, administrators, nurses, and families, to discuss among themselves what they think the core values should be and present their conclusions at a two-part meeting. We co-led the family team, and will be presenting at part one of this meeting on Tuesday afternoon.
We took this over from our boss, who just left the hospital last week. We knew we'd be taking this over, and had been assured that this was a low-key, conversational-style meeting where all we'd need were some handouts for everyone. We just found out Friday morning that this
is actually a full-on business meeting and everyone is using slide presentations. Kay, who shares this job with me, called the girl planning everything and explained our situation -- we just took this over, we only work 8 hours a week, etc. and got the full scoop.
So now we have to scramble to pull together a presentation, after just using all our hours for the last two weeks to see our boss off in style and put together our January advisory council meeting (which is our primary task). I think it's going to be fine, and I really like the people we're presenting with so I know the meeting is going to be enjoyable -- it's just a lot of work we hadn't planned on... at the last minute!
Vision Meeting for the Family Advisory Council: Given the fact that our boss, and one of the founders of the family advisory council at our hospital, has left, and the fact that her boss Dave (VP of our department) is also retiring in the next year, we have started a series of meetings with him and his boss, Bill, about our vision for the future. We have discovered that Dave doesn't know much about what we do. Whether this is because our boss always had everything well in hand and he never felt the need to inquire, or whether he just has too much oversee, we don't know. But we can tell we have a big job ahead of us. Fortunately, Bill is a member of our council and has been for the past 2 years. So we need to keep both of them in the loop until things settle down again... in a year or two.
Oh, and I also get to tell them I'm expecting! This has gone extremely well -- everyone has been very excited and positive so far, which has been refreshing. As I expected, I've gotten some "How many more are you going to have?" totally none-of-their-business questions, but these have come from friends and family, not from work.
(For those of you who are wondering but too polite to ask, the answer is that we don't know. We take it one at a time. Thank you for not asking.)
Super-cold temperatures: My father-in-law works in the propane industry. He isn't sure if it's hype or real, but the propane companies are forecasting that in our area, February is going to be the coldest month on record. We are going to really appreciate our garage this month if those forecasts come true. It's no fun trying to get two kids and a wheelchair into a van when a bitter-cold wind is blowing. The fingers just don't want to work fastening all the seatbelts and tethers for the chair. However, I'm trying to enjoy being cold now since in just a few months, I won't be able to get comfortable, let alone cold!
Beginning of My Second Trimester: and hopefully an easing of the fatigue! The morning sickness is pretty much gone now, thank goodness. But I'm still really wiped out if I have a busy day, and it takes me a good 2 -3 days to recover now, inste ad of just one like before. I'm really hoping for a surge in energy soon, especially since I'm going to need it to keep the kids from going stir-crazy if it's too cold to get outside!
However, I am now a little anxious about this appointment. I just got a letter last week stating that the team includes a behavioral psychologist. This isn't the first time we've seen a team that includes one, but always before I knew we didn't have any issues pertinent to them. This time I am not so sure. I'm also not sure how I'm going to handle any questions about how I've tried to handle Elli's insomnia. Are they going to ask if we've handled it as a discipline issue? (We have.) I would think they'd want to know this, but I'm not comfortable detailing all the ways we've tried to discipline her, given today's prevailing attitudes towards disciplining children.
Presentation to Top Level Execs at Children's: Our children's hospital chairman of the board, a lovely man who has been a long-time champion of family-centered care, is working with the group in charge of long-term planning for the hospital to determine what the hospital's core values should be. Core values are guiding principles that don't change over time and that drive all of the hospital's decisions, even when they aren't in the best business interest of the organization. Examples include integrity, quality, and trust.
He asked eight different groups within the hospital, including residents, administrators, nurses, and families, to discuss among themselves what they think the core values should be and present their conclusions at a two-part meeting. We co-led the family team, and will be presenting at part one of this meeting on Tuesday afternoon.
We took this over from our boss, who just left the hospital last week. We knew we'd be taking this over, and had been assured that this was a low-key, conversational-style meeting where all we'd need were some handouts for everyone. We just found out Friday morning that this
is actually a full-on business meeting and everyone is using slide presentations. Kay, who shares this job with me, called the girl planning everything and explained our situation -- we just took this over, we only work 8 hours a week, etc. and got the full scoop.
So now we have to scramble to pull together a presentation, after just using all our hours for the last two weeks to see our boss off in style and put together our January advisory council meeting (which is our primary task). I think it's going to be fine, and I really like the people we're presenting with so I know the meeting is going to be enjoyable -- it's just a lot of work we hadn't planned on... at the last minute!
Vision Meeting for the Family Advisory Council: Given the fact that our boss, and one of the founders of the family advisory council at our hospital, has left, and the fact that her boss Dave (VP of our department) is also retiring in the next year, we have started a series of meetings with him and his boss, Bill, about our vision for the future. We have discovered that Dave doesn't know much about what we do. Whether this is because our boss always had everything well in hand and he never felt the need to inquire, or whether he just has too much oversee, we don't know. But we can tell we have a big job ahead of us. Fortunately, Bill is a member of our council and has been for the past 2 years. So we need to keep both of them in the loop until things settle down again... in a year or two.
Oh, and I also get to tell them I'm expecting! This has gone extremely well -- everyone has been very excited and positive so far, which has been refreshing. As I expected, I've gotten some "How many more are you going to have?" totally none-of-their-business questions, but these have come from friends and family, not from work.
(For those of you who are wondering but too polite to ask, the answer is that we don't know. We take it one at a time. Thank you for not asking.)
Super-cold temperatures: My father-in-law works in the propane industry. He isn't sure if it's hype or real, but the propane companies are forecasting that in our area, February is going to be the coldest month on record. We are going to really appreciate our garage this month if those forecasts come true. It's no fun trying to get two kids and a wheelchair into a van when a bitter-cold wind is blowing. The fingers just don't want to work fastening all the seatbelts and tethers for the chair. However, I'm trying to enjoy being cold now since in just a few months, I won't be able to get comfortable, let alone cold!
Beginning of My Second Trimester: and hopefully an easing of the fatigue! The morning sickness is pretty much gone now, thank goodness. But I'm still really wiped out if I have a busy day, and it takes me a good 2 -3 days to recover now, inste ad of just one like before. I'm really hoping for a surge in energy soon, especially since I'm going to need it to keep the kids from going stir-crazy if it's too cold to get outside!
Arguments
My kids' favorite things to argue about these days:
- Are we "home" or are we at our "house?" They argue about this every time we return home from being out, despite my assertions that the words mean the same thing.
- Who gets to say "no" to the other one? Sam in particular finds it upsetting for Anna to tell him "no." He comes to me at least once a day with the same tragic story, "Anna told me 'No'!" no matter how many times I fail to be impressed.
- Whose turn is it to choose what we watch today?
- Can a sibling sit on, or even touch, my chair? It sounds like a war in here if one of the kids tries to do anything to the other one's chair. With the sole exception of Sam carrying Anna's chair up or down the stairs -- as long as he's going the direction she wants him to!
Jan 24, 2007
Sleep
I filled out a ten-page questionnaire for Elli today, in preparation for a visit to the Sleep Clinic at our local children's hospital next week.
I had to laugh at the third question they asked.
"Why do you think your child is having problems with his or her sleep?"
Well gee. If I knew that, I wouldn't be coming to see you, now would I!
As I type this, she's in her room hollering at the top of her lungs. It's 9:45pm. We did put the kids to bed late tonight -- we had a church meeting tonight and even though she had an aide who stayed at home with her, we have learned that putting her to bed before her sister is counterproductive. Invariably, if Elli actually falls asleep before Anna goes to bed, Anna has a horrible night, cries and fusses about going to bed herself, and wakes Elli up. The effect is like Elli took a nap... incredibly late in the day. She won't go back to sleep for at least 2 hours, more likely for 3-4 more hours.
So anyway, she's been in bed since 8:45 or 9pm. She was in a great mood all through the bedtime routine. Then Scott closed the door and she began letting us have it. I suspect it's her usual complaint on Wednesdays -- lack of quality time with me. She goes to either aquatic or occupational therapy straight from school with an aide, then spends the evening with her while we host a prayer group at our home in the evening. Usually I sit with her and give her a drink after the other kids go to bed, but tonight I'm exhausted and she is sick and I thought (here is apparently my fatal error) that she would be ready to sleep when we got home.
Something that happened this evening didn't meet her expectations. So she's yelling and carrying on and I'm being stubborn. Frankly, it's incredibly difficult for me to see past her behavior to meet her needs when she is being so unpleasant. The Last Thing I Want To Do when she's being like this is go hug and cuddle with her. I guess I still have a long way to go as a mother. As of right now, unconditional love really does have its limits.
I had to laugh at the third question they asked.
"Why do you think your child is having problems with his or her sleep?"
Well gee. If I knew that, I wouldn't be coming to see you, now would I!
As I type this, she's in her room hollering at the top of her lungs. It's 9:45pm. We did put the kids to bed late tonight -- we had a church meeting tonight and even though she had an aide who stayed at home with her, we have learned that putting her to bed before her sister is counterproductive. Invariably, if Elli actually falls asleep before Anna goes to bed, Anna has a horrible night, cries and fusses about going to bed herself, and wakes Elli up. The effect is like Elli took a nap... incredibly late in the day. She won't go back to sleep for at least 2 hours, more likely for 3-4 more hours.
So anyway, she's been in bed since 8:45 or 9pm. She was in a great mood all through the bedtime routine. Then Scott closed the door and she began letting us have it. I suspect it's her usual complaint on Wednesdays -- lack of quality time with me. She goes to either aquatic or occupational therapy straight from school with an aide, then spends the evening with her while we host a prayer group at our home in the evening. Usually I sit with her and give her a drink after the other kids go to bed, but tonight I'm exhausted and she is sick and I thought (here is apparently my fatal error) that she would be ready to sleep when we got home.
Something that happened this evening didn't meet her expectations. So she's yelling and carrying on and I'm being stubborn. Frankly, it's incredibly difficult for me to see past her behavior to meet her needs when she is being so unpleasant. The Last Thing I Want To Do when she's being like this is go hug and cuddle with her. I guess I still have a long way to go as a mother. As of right now, unconditional love really does have its limits.
Jan 23, 2007
Patience
...is the fruit of sleep.
How quickly a weekend of rest disappears!
I didn't get a nap yesterday because Anna woke up 10 minutes after I laid down. There was no going back at that point. I went to bed a bit early -- 10pm -- which was good because Elli woke up at 4am and never went back to sleep. I moved her out to the couch in the family room, as far from everyone else as possible, but she yelled her protest off and on for the next 2 1/2 hours when I finally got up.
I had a headache, so I decided not to go to the gym. I did an exercise video instead. By the time I finished, everyone was up and in the family room with me.
I hate exercising with an audience.
At the gym no-one looks at anyone because we're all half asleep and minding our own business. At home, me doing a workout video is a spectator sport!
Except for Elli. She expressed her unhappiness at the viewing material the entire 40 minutes, and when I was done, Sam said, "Do you think we can find something more fun to watch now?"
Needless to stay, the day started out with mommy in a pretty irritated state of mind.
I decided to go against my instinct, and take the younger two out running errands once we got Elli on the bus for school (with instructions to only allow a brief nap in the morning if anything). I figured it was a recipe for disaster, but I had some things I needed to get done.
It was the best decision I could have made. Being out and about gave everyone a distraction and helped me break out of the bad mood I festered in all morning. I got a lot of errands run, found a maternity cami that will buy me at least another month in my pre-pregnancy clothes (it's really long and stretchy to cover up unbuttoned pants), and met another mom at an indoor playground so our kids could play.
Elli took a short, 20-minute nap this morning, and seems to be in pretty good spirits this afternoon. I reallyreallyreallyreally hope she goes to sleep easily tonight. If not, I think I may take a quilt and a pillow to the van.
How quickly a weekend of rest disappears!
I didn't get a nap yesterday because Anna woke up 10 minutes after I laid down. There was no going back at that point. I went to bed a bit early -- 10pm -- which was good because Elli woke up at 4am and never went back to sleep. I moved her out to the couch in the family room, as far from everyone else as possible, but she yelled her protest off and on for the next 2 1/2 hours when I finally got up.
I had a headache, so I decided not to go to the gym. I did an exercise video instead. By the time I finished, everyone was up and in the family room with me.
I hate exercising with an audience.
At the gym no-one looks at anyone because we're all half asleep and minding our own business. At home, me doing a workout video is a spectator sport!
Except for Elli. She expressed her unhappiness at the viewing material the entire 40 minutes, and when I was done, Sam said, "Do you think we can find something more fun to watch now?"
Needless to stay, the day started out with mommy in a pretty irritated state of mind.
I decided to go against my instinct, and take the younger two out running errands once we got Elli on the bus for school (with instructions to only allow a brief nap in the morning if anything). I figured it was a recipe for disaster, but I had some things I needed to get done.
It was the best decision I could have made. Being out and about gave everyone a distraction and helped me break out of the bad mood I festered in all morning. I got a lot of errands run, found a maternity cami that will buy me at least another month in my pre-pregnancy clothes (it's really long and stretchy to cover up unbuttoned pants), and met another mom at an indoor playground so our kids could play.
Elli took a short, 20-minute nap this morning, and seems to be in pretty good spirits this afternoon. I reallyreallyreallyreally hope she goes to sleep easily tonight. If not, I think I may take a quilt and a pillow to the van.
Jan 22, 2007
Baby Blogging
I've decided to keep my pregnancy-related writing separate from my usual blog. I have started a website just for family stuff -- photos, video clips, a journal, etc. If you are interested in checking this one out, email me at joybennett at excite dot com. I will send you the address and password. This one is has personal information like where I live, people's last names, etc so I have password-protected it and am not linking to it from here.
Ahhhh....
We had a wonderful weekend. I steadily got better from my cold, though I did drink Robitussin like water. I really enjoyed a break from the daily grind of cooking, cleaning, dressing kids, changing kids, getting up in the middle of the night with kids, and working my entire day's schedule around theirs.
I left the house without a purse, diaper bag, sippee cups, and entertainment-bag-of-tricks.
I ate enormous delectable breakfasts that filled me up so much I didn't need lunch.
I drank coffee that I didn't have to fix myself.
I didn't wash a single dish.
The only thing I cooked was a bag of microwaveable popcorn.
We listened to the music we wanted to. Or we didn't listen to anything at all.
We wandered through stores without constantly keeping children from breaking things, running off, and spilling their drinks on items for sale. We left the stores when we were done, instead of when someone was hungry or tired or dirty or having a meltdown.
I made great progress on the stocking I'm knitting for my niece. When I finish this section, I'll post a photo.
The kids did GREAT with my parents and no-one got sick. They didn't cling to us like barnacles when we returned, either!
My only disappointments were that it didn't start snowing sooner, so as to snow us in another day; that I didn't sleep better (par for the course during pregnancy unfortunately, especially when you're sick); and that I didn't get more time to read.
All in all, it was a fabulous weekend.
I left the house without a purse, diaper bag, sippee cups, and entertainment-bag-of-tricks.
I ate enormous delectable breakfasts that filled me up so much I didn't need lunch.
I drank coffee that I didn't have to fix myself.
I didn't wash a single dish.
The only thing I cooked was a bag of microwaveable popcorn.
We listened to the music we wanted to. Or we didn't listen to anything at all.
We wandered through stores without constantly keeping children from breaking things, running off, and spilling their drinks on items for sale. We left the stores when we were done, instead of when someone was hungry or tired or dirty or having a meltdown.
I made great progress on the stocking I'm knitting for my niece. When I finish this section, I'll post a photo.
The kids did GREAT with my parents and no-one got sick. They didn't cling to us like barnacles when we returned, either!
My only disappointments were that it didn't start snowing sooner, so as to snow us in another day; that I didn't sleep better (par for the course during pregnancy unfortunately, especially when you're sick); and that I didn't get more time to read.
All in all, it was a fabulous weekend.
Jan 19, 2007
Romantic Weekend Getaway
My busy week is almost done. We bade farewell to my boss at work yesterday, the gift I made really touched her (she says it's the first thing she'll hang up when she gets to her new home), and I told her and my new (interim for now -- hopefully permanent) boss that I'm expecting and won't be able to present at the conference this summer (which just accepted my abstract two days ago, but oh well -- maybe next year).
Oh. I guess I haven't posted this news yet! I was waiting until I told my supervisors at work, and until I reached 12 weeks.
I am expecting another baby! We'll be welcoming child number four into our home in late July or early August. I'll be 12 weeks along this weekend, and am really hoping my energy comes back soon. And my immune system -- I have a new cold that really took it out of me this week.
So why did I title this post romantic weekend getaway? because that's where we're going this afternoon! My parents gave us a gift certificate for a bed & breakfast about 1 hour's drive from their house, which we're using this weekend. We'll drop the kids off with them, grab dinner and visit awhile, then head out for 2 nights all by ourselves. We are SO looking forward to getting a break from the frantic pace of life and having some uninterrupted time together. Uninterrupted meals. Uninterrupted sleep (except getting up to go the bathroom... and maybe take more Robitussin if this cough persists). Uninterrupted knitting and reading and just plain vegging. Can you tell I'm excited?!
Oh. I guess I haven't posted this news yet! I was waiting until I told my supervisors at work, and until I reached 12 weeks.
I am expecting another baby! We'll be welcoming child number four into our home in late July or early August. I'll be 12 weeks along this weekend, and am really hoping my energy comes back soon. And my immune system -- I have a new cold that really took it out of me this week.
So why did I title this post romantic weekend getaway? because that's where we're going this afternoon! My parents gave us a gift certificate for a bed & breakfast about 1 hour's drive from their house, which we're using this weekend. We'll drop the kids off with them, grab dinner and visit awhile, then head out for 2 nights all by ourselves. We are SO looking forward to getting a break from the frantic pace of life and having some uninterrupted time together. Uninterrupted meals. Uninterrupted sleep (except getting up to go the bathroom... and maybe take more Robitussin if this cough persists). Uninterrupted knitting and reading and just plain vegging. Can you tell I'm excited?!
Jan 16, 2007
Quick Opinion Poll
This is a farewell gift for my boss at work. She loves shoes. I made the shoe and Scott and I wrote something to go in the square next to it within this frame.
My dilemma is which color to put behind the shoe -- black or silver.
Which do you like better?
My dilemma is which color to put behind the shoe -- black or silver.
Which do you like better?
Jan 11, 2007
Comments
I love to read your thoughts and reactions, your questions and debate. It's great! But I have always wondered exactly how to respond to comments or questions to my blog entries.
I've decided to respond within the comments themselves. So if you've asked me a question, check back there for my response. I'll try to be better about responding, too, though I'll probably wait until I can answer everything in one shot.
If you'd rather not have your thought posted to my blog, feel free to email me instead. Thanks for reading!
I've decided to respond within the comments themselves. So if you've asked me a question, check back there for my response. I'll try to be better about responding, too, though I'll probably wait until I can answer everything in one shot.
If you'd rather not have your thought posted to my blog, feel free to email me instead. Thanks for reading!
A Fantastic Argument
Last night I had an argument with Elli.
It was 9pm, I had put the other two kids to bed after a lively evening of play with the children of the people gathered in our home for prayer. Elli had spend the evening with her aide, so hadn't seen much of us. I took her out to the couch with me to give her a drink.
She drank for a minute, then pushed her cup away. I could tell she had something to say, so I gave her the Dynavox.
She went to her main page, then "Food and Drink," "Dessert," "Pudding."
Huge smile at me.
I told her, "No Elli. You had pudding at dinner, and then you had a cookie. You've had all the dessert you can for the day."
She went to her conversation page, then "Yes or No," then started hitting, "yes" over and over, grinning at me.
I had to restrain the grin. "No, Elli. You can't have dessert. Your choice is milk or bed."
"Yes. Yes. Yes." More grins.
Scott came over and I told him I was having a fantastic argument with Elli. She then went back to her dessert page and asked him for pudding!
There is nothing the matter with this girl's thought processes. Arguing, asking the other parent, persisting in her request... it's all totally normal. I love it.
It was 9pm, I had put the other two kids to bed after a lively evening of play with the children of the people gathered in our home for prayer. Elli had spend the evening with her aide, so hadn't seen much of us. I took her out to the couch with me to give her a drink.
She drank for a minute, then pushed her cup away. I could tell she had something to say, so I gave her the Dynavox.
She went to her main page, then "Food and Drink," "Dessert," "Pudding."
Huge smile at me.
I told her, "No Elli. You had pudding at dinner, and then you had a cookie. You've had all the dessert you can for the day."
She went to her conversation page, then "Yes or No," then started hitting, "yes" over and over, grinning at me.
I had to restrain the grin. "No, Elli. You can't have dessert. Your choice is milk or bed."
"Yes. Yes. Yes." More grins.
Scott came over and I told him I was having a fantastic argument with Elli. She then went back to her dessert page and asked him for pudding!
There is nothing the matter with this girl's thought processes. Arguing, asking the other parent, persisting in her request... it's all totally normal. I love it.
Jan 7, 2007
Blessed with Problems
Yes, I am blessed to have faced problems in my life.
Seven years ago, I would never have believed I could write a sentence like that. Seven years ago, I was great with child, eagerly anticipating the arrival of our firstborn. I'd had a fairly uneventful pregnancy and even remember thinking to myself, "This has been so easy that I'm sure it's going to catch up with me later. We're going to have a really rebellious teen or something."
I even had the picture-perfect natural childbirth. My labor started at night and I was able to sleep through the first few hours of it. My water broke at home, and when we arrived at the hospital, I was just an hour from time to push. Our daughter emerged a bit floppy, and needed some extra oxygen at first, but she perked right up and we thought all was well with the world.
Then the pediatrician came by to check her out. We actually have this part on video: he used three different stethoscopes, even having me use the call button to ask another nurse to bring in another stethoscope, to listen to her heart. I completely blew him off, however; telling myself that babies are born with heart murmurs all the time. I was pretty cynical about the medical profession at the time and was sure that he just wanted to run my bill up with unnecessary tests.
We took our baby home without getting those test results, but she began losing weight rapidly, wouldn't eat well, and developed a pretty serious case of jaundice. When a nurse came to check on us two days later, she was very concerned and sent us to the doctor that afternoon. They in turn sent us to the local children's hospital emergency room. This really irritated me -- I was not at all thrilled about taking my newborn to an ER with who-knows-how-many unidentified germs floating around. We got lost on the way because we'd never been there, and the baby blues hit me that morning, so I was an emotional mess before we even walked in the door.
I didn't know this at the time, but we spent about 2 minutes in the waiting room before being called back. I should have known that meant we were a high priority case and something big was going on. But I was blissfully ignorant of the process at the time. All I knew is that they kept sticking needles in my baby, trying to get what I thought was an unnecessary IV. I made a solemn vow in my mind to her as I watched a nurse try for the 9th time: "I promise you that when we get out of here, we will live like gypsies and never come back to a doctor or hospital again."
Eventually, they got some blood, sent her for a chest x-ray, did an EKG to look at her heart rhythms, and moved us to a room with better observation from nurses. Again, I had no clue this meant she was really sick. Very quickly, two cardiologists came in and told us they were doing an ultrasound of her heart, called an echo, and we should take the time to get something to eat. The test would take at least an hour, and they'd take good care of our baby.
So we headed to the cafeteria. The nurses were so compassionate to us, and quickly realized I was still recovering from a very recent delivery. They got me all the supplies I needed and helped us find food and drink.
When we returned, they were still trying to figure out where everything went. They had gained access to Elli's veins through her umbillical site, so she was getting fluids and some medicine, and her bilirubin level (indicating how bad her jaundice was) came back high. So the process was already in place to admit her. I remember Scott calling our pastor and telling him that the doctors were still trying to figure stuff out, but things looked pretty serious. It was beginning to dawn on us that we were in uncharted territory and this wasn't a simple case of a heart murmur that would go away.
Finally the doctors finished their test and took us into a private room while the nurses prepped Elli to move upstairs into an ICU. They drew us sketches of a normal heart and then explained how Elli's heart was vastly different. Their initial impression was that she would need a heart transplant because her defects were so many and so complex. They even advised us to get marriage counseling if we needed it because we were in for a long haul and this would be very stressful for us.
We walked with our little girl up to the NICU that night, and left her basking under ultraviolet lights to treat her jaundice, hooked up to one or two IVs to keep her hydrated and give her heart some medicine. I felt very strange driving away with an empty carseat in the back of the car, but they encouraged us to go home and get some rest, as we were in for a long haul.
The next day when we arrived, we were met in the hallway by her doctor and a chaplain. At this point, I did know what this meant, but everything slowed down and my brain just would not dare to think it. We again sat down in a private room, where we heard the words I will never forget:
We threw a big party when she turned one, partly to celebrate her birthday, but mostly as a thank-you to the many people who had encouraged, prayed for, and helped the three of us get through that year.
(We also had a friend make an anatomically-correct heart cake out of red velvet -- you get warped sense of humor when you live this kind of life!)
She will turn seven years old next month, and is enjoying her fourth year since a major surgery. She has many physical challenges because somewhere along the way (no one can tell us exactly when), she suffered a permanent brain injury affecting her motor control. She has a difficult time controlling her muscles, which means she is unable to walk or crawl or even sit on her own. She cannot speak, though she can vocalize and use a computer to express herself. She is on many medicines and needs assistance to do everything. She is also beginning to experience complications from being in a wheelchair and not moving her body as it was designed to move.
This may initially seem like a very depressing story. But we have learned many things about the faithfulness of God, the love He bestows on us through His children, and the value He places in what the world sees as useless or weak or deficient or worthless. Our daughter is a precious gift and has taught us so much.
One of the best things about this experience has been the lessons in what is really important. I run into people constantly who think that something is a problem if it causes them discomfort or forces them to make changes or happens differently than they had planned or requires them to do something because it's best for someone else, not for them.
I've learned that inconveniences and discomfort, changes of plans, and making adjustments to better serve my friends and family, are not problems at all. They are opportunities to show love for others, to accept that God's plan for that particular moment isn't mine and that's better and I must surrender to His will, to do the right thing even if it isn't the easiest thing, and to put my desires and wishes behind the needs and wants of others. This is, after all, what we as Christians are called to do for each other. It's called sacrificial love. It's called preferring others over yourself. It's called walking through the narrow gate, dying to ourselves, being imitators of Christ.
My experience with facing real, life-or-death crises has given me a totally new perspective on the little annoyances of life. More of the time now (I still struggle when things don't go according to my plan, but I confess to a deep-seated desire to be God that He is still rooting out), I can see past the change or the discomfort or the inconvenience to the reality that it isn't that big of a deal in the eternal scheme of things. Will I remember this in a day, or a week, or a month, or a year? Does it affect someone's salvation or their testimony? Is someone going to die, go to the hospital, go without a meal, or have no roof over their head that night? If not, then it's not worth fighting against or getting upset about or yelling or guilt-tripping or criticizing. In fact, those reactions are sin.
Unfortunately, not everyone is blessed with this perspective. Our family seems to be better able to roll with the punches and make mid-course corrections when things change than a significant number of those we come into contact with. The road we've traveled is certainly a unique one. I guess we have just had more practice at this, having had to change more plans because of health problems and make more spur-of-the-moment trips to urgent care and the emergency room than I can count.
I truly do feel blessed for having been assigned this road. I'm not the person I was ten years ago, five years ago, three years ago. Praise God for that! I have lightyears to go yet, but it's encouraging to know that God didn't leave me where I was, and He isn't going to let me languish here either.
Don't get me wrong. I haven't been a bliss-filled, unflappable, accepting person of this experience from day one. I've had many moments of raging at God, shaking my fist at Him, and demanding to know who this could possibly be for my good. The physical, mental, and emotional exhaustion was bone-deep. Still is, sometimes. I went through a long spiritual drought where I believed that while God could answer my prayers and that He was good, He wasn't going to do it for me. I figured if there was a hardest way possible, that's the way He would choose for me.
One night I remember being so discouraged by my inability to get through to -- to communicate with and correct -- my daughter, that I begged Him to take her before I utterly ruined her. But even as I asked it, I know that He wouldn't do that because it was much harder to make me trudge on. Studying through Jerry Bridges' book "Trusting God Even When Life Hurts" with a women's Bible study a couple years ago really helped me find Biblical answers to the pain and struggle I've been through, and know I will face again.
Because, to be painfully, brutally honest, I often feel like I live my life waiting for the other shoe to drop. Because once the first shoe has dropped, you know that it can happen again. And You Never Want To Be Surprised By It Again.
Every time I walk into my daughter's bedroom (whether it's 10pm, 3am, or 7am when it's time to get her up for school), I wonder for a second what I will find. Will she be alive? Will she be covered in blood or vomit? (Which has happened many times.) With every phone call, I have a momentary pang of wonder if bad news waits on the other end. Every time I pass the entrance to the emergency room or hear an ambulance siren, I wonder when that will be me again.
Those things, those types of concerns, seem to me to be Real Problems. And there I think I detect the foul odor of pride in my heart.
For this seems to be where God is hammering me. He is confronting me with my lack of long-suffering towards those who still see minor inconveniences or temporary discomforts as Major Problems. In examining my heart, I see a need for Him to produce in me greater empathy for those who are struggling in this area. I also see Him exposing my prideful heart.
So I ask for your prayers for me. Pray that God would grant me genuine love and patience for my brothers and sisters in Christ, even as I need love and patience from Him and from them. Pray that He would give me such a hatred for my sin that I would fight it and pursue Him with every ounce of my being. Pray that I would cast my cares on God and rest in the confidence that He can and will carry me through whatever lies ahead, whether it's more of the long slow toil of the daily grind or a sudden, unexpected major crisis. And pray that I would humble myself to His directing hand and learn to daily walk in His strength, not my own weakness-mascarading-as-strength.
Seven years ago, I would never have believed I could write a sentence like that. Seven years ago, I was great with child, eagerly anticipating the arrival of our firstborn. I'd had a fairly uneventful pregnancy and even remember thinking to myself, "This has been so easy that I'm sure it's going to catch up with me later. We're going to have a really rebellious teen or something."
I even had the picture-perfect natural childbirth. My labor started at night and I was able to sleep through the first few hours of it. My water broke at home, and when we arrived at the hospital, I was just an hour from time to push. Our daughter emerged a bit floppy, and needed some extra oxygen at first, but she perked right up and we thought all was well with the world.Then the pediatrician came by to check her out. We actually have this part on video: he used three different stethoscopes, even having me use the call button to ask another nurse to bring in another stethoscope, to listen to her heart. I completely blew him off, however; telling myself that babies are born with heart murmurs all the time. I was pretty cynical about the medical profession at the time and was sure that he just wanted to run my bill up with unnecessary tests.
We took our baby home without getting those test results, but she began losing weight rapidly, wouldn't eat well, and developed a pretty serious case of jaundice. When a nurse came to check on us two days later, she was very concerned and sent us to the doctor that afternoon. They in turn sent us to the local children's hospital emergency room. This really irritated me -- I was not at all thrilled about taking my newborn to an ER with who-knows-how-many unidentified germs floating around. We got lost on the way because we'd never been there, and the baby blues hit me that morning, so I was an emotional mess before we even walked in the door.
I didn't know this at the time, but we spent about 2 minutes in the waiting room before being called back. I should have known that meant we were a high priority case and something big was going on. But I was blissfully ignorant of the process at the time. All I knew is that they kept sticking needles in my baby, trying to get what I thought was an unnecessary IV. I made a solemn vow in my mind to her as I watched a nurse try for the 9th time: "I promise you that when we get out of here, we will live like gypsies and never come back to a doctor or hospital again."
Eventually, they got some blood, sent her for a chest x-ray, did an EKG to look at her heart rhythms, and moved us to a room with better observation from nurses. Again, I had no clue this meant she was really sick. Very quickly, two cardiologists came in and told us they were doing an ultrasound of her heart, called an echo, and we should take the time to get something to eat. The test would take at least an hour, and they'd take good care of our baby.
So we headed to the cafeteria. The nurses were so compassionate to us, and quickly realized I was still recovering from a very recent delivery. They got me all the supplies I needed and helped us find food and drink.
When we returned, they were still trying to figure out where everything went. They had gained access to Elli's veins through her umbillical site, so she was getting fluids and some medicine, and her bilirubin level (indicating how bad her jaundice was) came back high. So the process was already in place to admit her. I remember Scott calling our pastor and telling him that the doctors were still trying to figure stuff out, but things looked pretty serious. It was beginning to dawn on us that we were in uncharted territory and this wasn't a simple case of a heart murmur that would go away.
Finally the doctors finished their test and took us into a private room while the nurses prepped Elli to move upstairs into an ICU. They drew us sketches of a normal heart and then explained how Elli's heart was vastly different. Their initial impression was that she would need a heart transplant because her defects were so many and so complex. They even advised us to get marriage counseling if we needed it because we were in for a long haul and this would be very stressful for us.
We walked with our little girl up to the NICU that night, and left her basking under ultraviolet lights to treat her jaundice, hooked up to one or two IVs to keep her hydrated and give her heart some medicine. I felt very strange driving away with an empty carseat in the back of the car, but they encouraged us to go home and get some rest, as we were in for a long haul.
The next day when we arrived, we were met in the hallway by her doctor and a chaplain. At this point, I did know what this meant, but everything slowed down and my brain just would not dare to think it. We again sat down in a private room, where we heard the words I will never forget:
"Your daughter's heart stopped for thirty minutes. We did CPR but because of her defects, we have no idea how well we circulated blood to her brain. Even if she pulls through this, we will not be able to operate for a few weeks because her body has suffered such a major insult and needs time to recover. The surgery she needs is very major and will be difficult to recover from. I wish I could say, 'but the good news is ___,' but I can't."We learned later that they didn't expect her to survive that day. But she did! And the next day, and the next. We posted Isaiah 40:30-31 on her bed.
She underwent a 12-hour surgery at 3 weeks of age, followed by a 7-week hospital stay. She had another 8-hour surgery at 6 months to complete her heart repair (no transplants fortunately -- she still has her own heart and it's functioning very well now)."Even youths grow weary, and young men stumble and fall; but those who hope in the Lord will renew their strength; they will mount up on wings like eagles; they will run and not grow weary; they will walk and not be faint."
We threw a big party when she turned one, partly to celebrate her birthday, but mostly as a thank-you to the many people who had encouraged, prayed for, and helped the three of us get through that year.(We also had a friend make an anatomically-correct heart cake out of red velvet -- you get warped sense of humor when you live this kind of life!)
Elli enjoyed the red velvet
birthday cake.
That was the beginning of a long journey that has so far included a total of four heart surgeries, countless illnesses including an infection in her blood at 4 months old, and years of therapies.birthday cake.
She will turn seven years old next month, and is enjoying her fourth year since a major surgery. She has many physical challenges because somewhere along the way (no one can tell us exactly when), she suffered a permanent brain injury affecting her motor control. She has a difficult time controlling her muscles, which means she is unable to walk or crawl or even sit on her own. She cannot speak, though she can vocalize and use a computer to express herself. She is on many medicines and needs assistance to do everything. She is also beginning to experience complications from being in a wheelchair and not moving her body as it was designed to move.
This may initially seem like a very depressing story. But we have learned many things about the faithfulness of God, the love He bestows on us through His children, and the value He places in what the world sees as useless or weak or deficient or worthless. Our daughter is a precious gift and has taught us so much.
One of the best things about this experience has been the lessons in what is really important. I run into people constantly who think that something is a problem if it causes them discomfort or forces them to make changes or happens differently than they had planned or requires them to do something because it's best for someone else, not for them.
I've learned that inconveniences and discomfort, changes of plans, and making adjustments to better serve my friends and family, are not problems at all. They are opportunities to show love for others, to accept that God's plan for that particular moment isn't mine and that's better and I must surrender to His will, to do the right thing even if it isn't the easiest thing, and to put my desires and wishes behind the needs and wants of others. This is, after all, what we as Christians are called to do for each other. It's called sacrificial love. It's called preferring others over yourself. It's called walking through the narrow gate, dying to ourselves, being imitators of Christ.
My experience with facing real, life-or-death crises has given me a totally new perspective on the little annoyances of life. More of the time now (I still struggle when things don't go according to my plan, but I confess to a deep-seated desire to be God that He is still rooting out), I can see past the change or the discomfort or the inconvenience to the reality that it isn't that big of a deal in the eternal scheme of things. Will I remember this in a day, or a week, or a month, or a year? Does it affect someone's salvation or their testimony? Is someone going to die, go to the hospital, go without a meal, or have no roof over their head that night? If not, then it's not worth fighting against or getting upset about or yelling or guilt-tripping or criticizing. In fact, those reactions are sin.
Unfortunately, not everyone is blessed with this perspective. Our family seems to be better able to roll with the punches and make mid-course corrections when things change than a significant number of those we come into contact with. The road we've traveled is certainly a unique one. I guess we have just had more practice at this, having had to change more plans because of health problems and make more spur-of-the-moment trips to urgent care and the emergency room than I can count.
I truly do feel blessed for having been assigned this road. I'm not the person I was ten years ago, five years ago, three years ago. Praise God for that! I have lightyears to go yet, but it's encouraging to know that God didn't leave me where I was, and He isn't going to let me languish here either.
Don't get me wrong. I haven't been a bliss-filled, unflappable, accepting person of this experience from day one. I've had many moments of raging at God, shaking my fist at Him, and demanding to know who this could possibly be for my good. The physical, mental, and emotional exhaustion was bone-deep. Still is, sometimes. I went through a long spiritual drought where I believed that while God could answer my prayers and that He was good, He wasn't going to do it for me. I figured if there was a hardest way possible, that's the way He would choose for me.
One night I remember being so discouraged by my inability to get through to -- to communicate with and correct -- my daughter, that I begged Him to take her before I utterly ruined her. But even as I asked it, I know that He wouldn't do that because it was much harder to make me trudge on. Studying through Jerry Bridges' book "Trusting God Even When Life Hurts" with a women's Bible study a couple years ago really helped me find Biblical answers to the pain and struggle I've been through, and know I will face again.
Because, to be painfully, brutally honest, I often feel like I live my life waiting for the other shoe to drop. Because once the first shoe has dropped, you know that it can happen again. And You Never Want To Be Surprised By It Again.
Every time I walk into my daughter's bedroom (whether it's 10pm, 3am, or 7am when it's time to get her up for school), I wonder for a second what I will find. Will she be alive? Will she be covered in blood or vomit? (Which has happened many times.) With every phone call, I have a momentary pang of wonder if bad news waits on the other end. Every time I pass the entrance to the emergency room or hear an ambulance siren, I wonder when that will be me again.
Those things, those types of concerns, seem to me to be Real Problems. And there I think I detect the foul odor of pride in my heart.
For this seems to be where God is hammering me. He is confronting me with my lack of long-suffering towards those who still see minor inconveniences or temporary discomforts as Major Problems. In examining my heart, I see a need for Him to produce in me greater empathy for those who are struggling in this area. I also see Him exposing my prideful heart.
So I ask for your prayers for me. Pray that God would grant me genuine love and patience for my brothers and sisters in Christ, even as I need love and patience from Him and from them. Pray that He would give me such a hatred for my sin that I would fight it and pursue Him with every ounce of my being. Pray that I would cast my cares on God and rest in the confidence that He can and will carry me through whatever lies ahead, whether it's more of the long slow toil of the daily grind or a sudden, unexpected major crisis. And pray that I would humble myself to His directing hand and learn to daily walk in His strength, not my own weakness-mascarading-as-strength.
Jan 4, 2007
Race
We recently made some changes to the services at church. Tonight was the first night of choir practice on a Thursday night, and Sam was very excited.
I knew he'd be disappointed when he discovered that he and his sisters were the only kids. So I packed my laptop and the movie "Curious George."
When we arrived at church, Sam said, "Hey. The parking lot is empty."
Before we could explain that tonight was different, he continued, "We won!"
I knew he'd be disappointed when he discovered that he and his sisters were the only kids. So I packed my laptop and the movie "Curious George."
When we arrived at church, Sam said, "Hey. The parking lot is empty."
Before we could explain that tonight was different, he continued, "We won!"
I've Been Tagged
Jennine, who writes My Ovaries Made Me Do It, tagged me to write six weird things about me. I'm not sure I can come up with six, but I'll try. (Everybody can stop snorting with laughter now.)
"According to the rules... Each player of this game starts with the "6 Weird Things about You". People who get tagged need to write a blog of their own 6 weird things as well as state this rule clearly. In the end, you need to choose 6 people to be tagged and list their names. Don't forget to leave a comment that says 'you are tagged' in their comments and tell them to read your blog!"
1. I talk to myself. It helps me organize the jumble of thoughts tumbling round my head to force them to come out one at a time in a way that makes sense.
2. I'm a bit obsessive about waste. No-one had to convince me to recycle -- I naturally incline towards reusing things and throwing things out is very hard for me to do.
3. I'm even more obsessive about germs. Kids sharing toys that they all put in their mouths is my idea of a nightmare. Perhaps I've spend too much time in hospitals, but I wash my hands so often that they often split and crack from dryness.
4. I am believe in the God of the Bible and that the Bible is His Word, but I HATE "Christian" radio. The majority of "popular" Christian music and DJs on the air, in my opinion, have no depth to their faith if they even have genuine faith. You can tell by what they say and write -- it's all about themselves, not about God. I hate "Christian" stores even worse. There's nothing worse than seeing Joel Osteen's books next to John Piper's next to Dr. Phil's wife next to Billy Graham next to the Duct Tape Bible. (This is a real-life example from an errand I ran immediately after Christmas.) It's totally a money-changers-in-the-Temple, making money off of God scene, and it makes me want to vomit and then torch the stuff.
5. I dislike shopping, while my husband likes it. I find that window-shopping fuels my discontent, which is a very unpleasant state of mind. If I don't know it's out there, I don't desire it when I can't get it. Shopping without the ability to get whatever I want is an exercise in frustration.
6. I enjoy doing old-fashioned, uncool things like cooking (but not baking), sewing, knitting, and gardening. I cook hot meals almost every night because I love to cook for my family (but mostly for Scott -- if he isn't home, my motivation is nearly gone).
Brooke, Brenda, Heather W., Megan, Amy W., and Kat -- you're it!
"According to the rules... Each player of this game starts with the "6 Weird Things about You". People who get tagged need to write a blog of their own 6 weird things as well as state this rule clearly. In the end, you need to choose 6 people to be tagged and list their names. Don't forget to leave a comment that says 'you are tagged' in their comments and tell them to read your blog!"
1. I talk to myself. It helps me organize the jumble of thoughts tumbling round my head to force them to come out one at a time in a way that makes sense.
2. I'm a bit obsessive about waste. No-one had to convince me to recycle -- I naturally incline towards reusing things and throwing things out is very hard for me to do.
3. I'm even more obsessive about germs. Kids sharing toys that they all put in their mouths is my idea of a nightmare. Perhaps I've spend too much time in hospitals, but I wash my hands so often that they often split and crack from dryness.
4. I am believe in the God of the Bible and that the Bible is His Word, but I HATE "Christian" radio. The majority of "popular" Christian music and DJs on the air, in my opinion, have no depth to their faith if they even have genuine faith. You can tell by what they say and write -- it's all about themselves, not about God. I hate "Christian" stores even worse. There's nothing worse than seeing Joel Osteen's books next to John Piper's next to Dr. Phil's wife next to Billy Graham next to the Duct Tape Bible. (This is a real-life example from an errand I ran immediately after Christmas.) It's totally a money-changers-in-the-Temple, making money off of God scene, and it makes me want to vomit and then torch the stuff.
5. I dislike shopping, while my husband likes it. I find that window-shopping fuels my discontent, which is a very unpleasant state of mind. If I don't know it's out there, I don't desire it when I can't get it. Shopping without the ability to get whatever I want is an exercise in frustration.
6. I enjoy doing old-fashioned, uncool things like cooking (but not baking), sewing, knitting, and gardening. I cook hot meals almost every night because I love to cook for my family (but mostly for Scott -- if he isn't home, my motivation is nearly gone).
Brooke, Brenda, Heather W., Megan, Amy W., and Kat -- you're it!
Mommy Space
I was in a doctor's waiting room yesterday, which is pretty normal for me. A week without a doctor's appointment is as rare as a blue moon, it seems.
In the waiting room with us were a few other kids, sitting quietly, looking at books. A few minutes later, their mother came out... with more kids. I started counting to myself. Two. Three. Four. Five. She's pregnant with her sixth. They must have been a home-schooled family because the older kids were definitely school-aged. Everyone was very well-behaved and the older ones helped the younger, and thus their mother who despite her calm demeanor, looked exhausted.
While I was reading books to my own, I overheard this mother say to her youngest (who looked about 1 1/2), "Leave mommy alone right now, please."
I can't tell you how much this encouraged me. I'm not the only one who says such things to her children! I'm not alone in my need for time to myself with no-one hanging on, climbing up, tugging, or otherwise touching me. Sometimes I feel guilty for feeling this way, like a really good mom, a truly selfless and loving mom, would never turn away a child or hide in the bathroom or burrow under blankets on the couch like a hibernating bear or a turtle retreating inside its shell once the kids are in bed and the housework is done.
And maybe that's true. But I'm not there yet. I need quiet and rest from the constant demands of me now and then. And it's good to know I'm not the only one!
In the waiting room with us were a few other kids, sitting quietly, looking at books. A few minutes later, their mother came out... with more kids. I started counting to myself. Two. Three. Four. Five. She's pregnant with her sixth. They must have been a home-schooled family because the older kids were definitely school-aged. Everyone was very well-behaved and the older ones helped the younger, and thus their mother who despite her calm demeanor, looked exhausted.
While I was reading books to my own, I overheard this mother say to her youngest (who looked about 1 1/2), "Leave mommy alone right now, please."
I can't tell you how much this encouraged me. I'm not the only one who says such things to her children! I'm not alone in my need for time to myself with no-one hanging on, climbing up, tugging, or otherwise touching me. Sometimes I feel guilty for feeling this way, like a really good mom, a truly selfless and loving mom, would never turn away a child or hide in the bathroom or burrow under blankets on the couch like a hibernating bear or a turtle retreating inside its shell once the kids are in bed and the housework is done.
And maybe that's true. But I'm not there yet. I need quiet and rest from the constant demands of me now and then. And it's good to know I'm not the only one!
Jan 2, 2007
Once Upon A Time
...there lived a girl who wouldn't urinate. She drank and drank, ate and ate. Her mother took her to a urology appointment 8 hours after her first drink, but her pullup was dry. They waited and waited. For two hours they waited, pouring more liquids down her throat while they waited. Her brother had to urinate. Her sister had to urinate. Her mom... well, she planned ahead and was fine. Finally, after two hours, the family gave up and went home with an appointment for three days later and instructions to journal in detail all wet diapers until then. Her doctor was a bit concerned. Her mother thought she must have gone crazy and forgotten that she changed a wet diaper that day. When they got home, the girl was still dry. The diaper her mother thought she had changed? Laying folded up neatly on the floor. The girl stayed dry for 10 hours. And counting.
Must Be Our Laptops
Laptop screens must have different sizes than desktops. That's the only reason I can come up wtih for both Scott and my computers screens chopping that photo above the pinky, but no-one else's doing it.
We will cease and desist emailing Australia about it. Good thing I asked, eh mate?
We will cease and desist emailing Australia about it. Good thing I asked, eh mate?
Yikes.
Last night my husband found what is quite possibly the church website faux pas of the year. Already. I have a hard time imagining anything beating this in the next 365 days.If you visit the Peninsula Vineyard Church of Australia, you will see this in the right sidebar.
Oh. My. Tell me that isn't the most disturbing image, especially on a church website?
I included my browser scrollbars to show that the picture is cut off when you first go to the page.
If you scroll down further, this is the entire image. Not what you were expecting, was it?
I told Scott he should email them about it. But he wasn't so sure, since there's a cultural difference and all.
I wonder if the image would be located higher, and therefore not cut off by my window, when the Christmas Eve notice is gone. But if that place always holds some sort of announcement, then the hands will always be cut off.
What do you think?
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