12:45 am
You read right, it's the middle of the night and yet here I sit, typing a blog while I would normally be sleeping. Not too far from me Bradley is sleeping pseudo peacefully in the crib. Like any hospital room there is an array of machines that are in here for him, quite a few that he won't use this time an if there truly is a God that forgives me my sins as I believe; I pray he will never use or need. For now they are monitoring how many times his heart beats, how many PVCs he has, how often he breathes, how often he shows an irregular heartbeat, if he suffers an episode of Apnea, and as always his Oxygen level. There's his feeding machine whirring away as always because a little guy has to eat. There's a machine that administers his medicine; the nurse pops a syringe in and a machine gives a perfectly timed dose of each one. So high tech, so sophisticated...so complicated...so loud. Everything beeps. Everything has an alarm and they are loud so that the nurse sitting outside between the two patient rooms she is caring for can hear them.
Bradley is a rock star and sleeps through them of course, well for the most part...me I hear them all. But I have been trained for this. From the birth of my first child my ear has been tuned to the sound of a whimper from their rooms. From the moment they inserted an ugly button in my son's perfectly smooth tummy, I have been tuned to the slightest sound from him. I wake at his change in breathing or too many turns in the crib; these can mean trouble for my little guy, so I hear them and I respond. I don't have to respond here, but I sure hear them.
After too many hospital stays with Bradley, I know what most of these machines are and what they do; I truly wish I really didn't. And though part of me longs for a return to the days when I was naive about the world of medicine; there is always the scholar in me too...the part of me that accepts the
knowledge as just part and parcel of something else for me to learn. First hand experience has proven rough, but experience is learning and that I just have to accept as part of what makes me, me - I've always kept my brain tuned to learning something new...it's harder because he's my son, but his life has so much to teach me and if I don't pay attention I miss what He has to teach me while I am learning what life with Him has to teach me. School's in session, time to pay attention.
In the midst of all these high tech machines monitoring everything about my son, there is an old fashioned clock on the wall. It's a comfort in a way, something familiar. These clocks have followed me throughout my life. They let me know when it was almost time to get out of school, they helped me track contractions when I was having my children. The clock in my room when I had Bradley delivered a steady ticking that I counted to help me turn off my head and let myself sleep. Perhaps if all these machines weren't so loud I could hear the ticks and turn off my head in order to sleep now. But you see, there is another clock in this room. A large digital clock that reads all zeroes, and that one is keeping me awake.
The digital clock represents every aspect of the PICU that I don't ever want to experience. That clock keeps account of precious moments in a child's life, every tiny second as a child struggles to stay here. I've known those who have lost their baby, their child and my heart bled for them then, and feels them now as I see the clock that would tick away the seconds of a child's life. My son's stay here is a precaution only, things that could have gone wrong and resulted in the employ of the rest of the machines in this room or any of others that could be rushed in - well those aren't things that have been necessary. They weren't anticipated either. We were a little surprised when he was wheeled into the PICU rather than the ward, but he is being watched like a hawk; we simply got lucky. Lucky all day.
Bradley did great in his surgery. No spasms in his bronchial, no trouble breathing as he woke from anesthesia, no nausea that was allowed to cause him discomfort. Tonsils that were extra large in a small throat are gone, adenoids too. Fluid off his ear and tubes in. A good hearing test that revealed normal hearing. And now he's sleeping almost peacefully. A nurse that fell in love with him during the day and one at night....and doctors that have bent over backwards to make a connection with him and have not left without letting us know that Bradley is adorable. So maybe there isn't a lot of sleep for me, but in the end - the digital clock is stopped and Bradley is healing as we speak...turns out it was actually a pretty good day after all! And as long as we go home in the morning, then it will be considered a pretty good night too.
Wednesday, January 30, 2013
Sunday, January 6, 2013
My Oldest
I started this Blog to raise awareness about Down syndrome, so I write about Bradley a lot. But I thought it would tell Bradley's story if I told the story of our family, the parents who are trying to make our way through this sometimes minefield like journey...and the two little girls that make every day a better day. Often I write about Sydney, because well let's face it, she is one funny little kid. Her laughter brings so much joy. In the midst of some of our toughest days, she manages to bring a spark of laughter that helps us get through to the next day, and sometimes, just the next moment. But today, I want to write about my Oldest. She gets more embarrassed and yet, she really likes it when I write about her, when I talk about her. Madison is ten years old, she's vivacious, her passion for life is this ever present flow of energy that if we could harness it, we could power a large town. Madison tackles life like it was placed before her to be tackled. She sees the good in every person, and until someone takes the time to point out the flaws...she doesn't see them. Her love of life is only rivaled by her love of her family. I worry sometimes that she will leave us all behind and pretend we are a mere bad dream...but I think sometimes I am projecting only my fears for tomorrow. I know that she is a typical 10 year old, in one instant she is capable of incredible selfishness; and yet, in the next moment I will see such incredible selflessness in her actions, such purity of love that it overwhelms me. She desperately wants to be good, to be the perfect kid. We try to tell her if she would stop trying so hard, she'd be there. She exhausts herself with her attempts and then falls off the proverbial cliff of poor judgement and then berates herself with such ferocity that it worries me and I constantly have to talk her down.
There are times I see myself in Madison, but mostly I see her Dad. She is a neat freak, she is truly an organized soul - that's her Dad. When things are disorganized or change comes, she struggles. But if you tell her what is coming, she can prepare and be ready. She has been admirable with regards to her brother. So little of our life is open for planning. We don't plan vacations or special trips to Disneyland because the finances have not been there true, but the health of her brother on any given day let's us know if we can venture out or not. At first we thought it best not to get her hopes up, but we've learned that sometimes she is happiest knowing the intent was there, and she has yet to blame her brother for the changing of plans.
And she is so much braver than her mother ever was or ever will be. Although I can say that having children brings out the mother bear in a mom, I will fight the battles I might have walked away from before. In fact, I will choose the battle that will teach the best moral lesson and those I will fight for my kids to see, win or lose. I want them to be fighters, I think in this world they have to be able to fight for themselves or else they will be lost. With this in mind, I try to temper the information I give Madison to help her through any tough situation at school. When she was being picked on last year I took it as a teaching moment, helping her to find the words, the actions that would strengthen her as a person and protect her from the jealous boy that hated that a girl could throw a football better than him. Our lessons were things like: you can cry on the inside, but don't let them see you cry at school. When the boy called her stupid and said nobody cared about her, she could tell him he was wrong, there were a lot of people who cared about her. I dug deep to try to reach through this boy's voice to make sure Madison could hear mine, and could hear her own. One bad day came after the story of the eleven year old that hung herself for being bullied. I will always remember sitting Madison up in the back of the Explorer and there, eye-to-eye I told her how important she was and how unimportant this boy was to her life. Yeah, maybe telling her that this little boy was so insignificant compared to her was not the PC thing to say by me; but well, at the time it was all she needed to hear and to know. Knowing that this jealous little boy means absolutely nothing to her life and is nothing in comparison to how great she is;well that made her stop crying then. The next day she talked back to him and walked away; "It hurt on the inside mom, but I didn't let him see it." And I hugged and told her I was proud of her. We finally interceded with the school when the boy chose to use profanity, as we felt the teasing had moved to abusive - the school moved swiftly from then and she no longer had trouble with this boy.
But at ten years old, troubles don't stop there. This year a new boy was her best friend for the first half of the year; but word came down from some girlfriends that he was talking mean behind her back. Madison had been devastated that this boy "liked" another girl, but had been comforted that they were still best friends, but now to know he wasn't a true friend; well...the tears came and came. Putting mom in a tough spot. The girls that told Madison this news are not the nicest of friends; and yet, these girls were exhibiting some strong loyalty towards Madison, unhappy that this boy would do this to her. Oh the ends and outs of trying to understand ten year old girls! I should have paid more attention when I was one! Grr... Anyhow, I told Madison that maybe she should ask the boy, and if it were true to tell him she thought they were friends, and now she'll stay away from him. Little did I know she'd do it. She confronted the boy, he was too shocked to lie, and she walked away telling him that she wouldn't bother him anymore. Wowee wow wow! I am quite certain that at ten years old I would never have confronted someone like that. I was so proud of her! I still am! Somehow I am teaching her to stand up for herself, something I didn't do for myself till I was well into High School. I'm trying not to consider how many ways this could backfire on me, for now I am just really thrilled that she has such a strong spine in her body.
My daughter has her issues to work through. She's really obsessive right now. Not sure where it comes from or how to fix it, but it's the Rubik's Cube I'm working on right now. I'm hoping to help her through it to a healthier mind frame, but maybe it's supposed to fix itself. Because I'm not sure, I'll do the research into it and then see what answers I get. But I know I love this kid and always will. She carries as much of my heart as her brother and her sister; whatever work needs to be done, we'll get through it together!
There are times I see myself in Madison, but mostly I see her Dad. She is a neat freak, she is truly an organized soul - that's her Dad. When things are disorganized or change comes, she struggles. But if you tell her what is coming, she can prepare and be ready. She has been admirable with regards to her brother. So little of our life is open for planning. We don't plan vacations or special trips to Disneyland because the finances have not been there true, but the health of her brother on any given day let's us know if we can venture out or not. At first we thought it best not to get her hopes up, but we've learned that sometimes she is happiest knowing the intent was there, and she has yet to blame her brother for the changing of plans.
And she is so much braver than her mother ever was or ever will be. Although I can say that having children brings out the mother bear in a mom, I will fight the battles I might have walked away from before. In fact, I will choose the battle that will teach the best moral lesson and those I will fight for my kids to see, win or lose. I want them to be fighters, I think in this world they have to be able to fight for themselves or else they will be lost. With this in mind, I try to temper the information I give Madison to help her through any tough situation at school. When she was being picked on last year I took it as a teaching moment, helping her to find the words, the actions that would strengthen her as a person and protect her from the jealous boy that hated that a girl could throw a football better than him. Our lessons were things like: you can cry on the inside, but don't let them see you cry at school. When the boy called her stupid and said nobody cared about her, she could tell him he was wrong, there were a lot of people who cared about her. I dug deep to try to reach through this boy's voice to make sure Madison could hear mine, and could hear her own. One bad day came after the story of the eleven year old that hung herself for being bullied. I will always remember sitting Madison up in the back of the Explorer and there, eye-to-eye I told her how important she was and how unimportant this boy was to her life. Yeah, maybe telling her that this little boy was so insignificant compared to her was not the PC thing to say by me; but well, at the time it was all she needed to hear and to know. Knowing that this jealous little boy means absolutely nothing to her life and is nothing in comparison to how great she is;well that made her stop crying then. The next day she talked back to him and walked away; "It hurt on the inside mom, but I didn't let him see it." And I hugged and told her I was proud of her. We finally interceded with the school when the boy chose to use profanity, as we felt the teasing had moved to abusive - the school moved swiftly from then and she no longer had trouble with this boy.
But at ten years old, troubles don't stop there. This year a new boy was her best friend for the first half of the year; but word came down from some girlfriends that he was talking mean behind her back. Madison had been devastated that this boy "liked" another girl, but had been comforted that they were still best friends, but now to know he wasn't a true friend; well...the tears came and came. Putting mom in a tough spot. The girls that told Madison this news are not the nicest of friends; and yet, these girls were exhibiting some strong loyalty towards Madison, unhappy that this boy would do this to her. Oh the ends and outs of trying to understand ten year old girls! I should have paid more attention when I was one! Grr... Anyhow, I told Madison that maybe she should ask the boy, and if it were true to tell him she thought they were friends, and now she'll stay away from him. Little did I know she'd do it. She confronted the boy, he was too shocked to lie, and she walked away telling him that she wouldn't bother him anymore. Wowee wow wow! I am quite certain that at ten years old I would never have confronted someone like that. I was so proud of her! I still am! Somehow I am teaching her to stand up for herself, something I didn't do for myself till I was well into High School. I'm trying not to consider how many ways this could backfire on me, for now I am just really thrilled that she has such a strong spine in her body.
My daughter has her issues to work through. She's really obsessive right now. Not sure where it comes from or how to fix it, but it's the Rubik's Cube I'm working on right now. I'm hoping to help her through it to a healthier mind frame, but maybe it's supposed to fix itself. Because I'm not sure, I'll do the research into it and then see what answers I get. But I know I love this kid and always will. She carries as much of my heart as her brother and her sister; whatever work needs to be done, we'll get through it together!
Tuesday, January 1, 2013
The Sleep of the Oreos
January 1, 2013
Happy New Year!!!
In honor of the night without a lot of sleep; it makes me chuckle to think about how little, or rather, how random the sleep pattern is in this house. Just when I think I have the littlest guy in a rather peaceful slumber pattern something happens to mess him up or something goes awry elsewhere in the kingdom. Before he had the button, Bradley would put himself to sleep on his own at night. After the button, he couldn't turn and turn and turn again; not unlike the habits of your favorite puppy, until he found his happy place and finally went to sleep. After the button the tube allowed for one, half turn before the machine started beeping and we came running and had to unwrap him. We finally gave in to the fates and held him till he fell asleep, then lay him down for the night - there was still the turning that led to the wrapping that led to the beeping that led to the running....well you get the idea. So we started sending the tubing down his leg and that led to less wrapping, less beeping, more sleeping for us. Of course that was short lived...the Infusion Services Company sent a newer, more user-friendly pump that had a shorter tubing...more wrapping, more beeping. Good GOD! So then we figured some more and came up with the plan to lower his machine as low as it would go and then putting the tubing through the slats to him...more turning, but less wrapping, and way less beeping. Let the sleeping begin! And yet, no, not so much!
You see we have two other kiddos in the house. Turns out the oldest, occasionally sleepwalks. And if she isn't sleepwalking, she's talking. It used to be we would be roused in the middle of the night with the occasional sounds from her room, we knew she was saying something but couldn't make it out. And that trip down the hall we just had to make to see if we could figure out what she was saying usually brought us no new knowledge...she says her piece, turns over and goes back to sleep pretty quick. And then the other night she apparently wanted us to know what she was saying because we got her full name at the top of her lungs: perhaps one of her parents were yelling at her in her sleep??? Not sure why she would yell at herself, but then there are times she yells at her sister too. Maybe she just likes to yell and sound bossy.
The middle kid is a puzzle box in herself. Half the time I have to search for her at night because she has bunk beds in her room and she swaps out the bed she sleeps in at random times. She'll have bad dreams about spiders and ants...creepy crawly things. If she comes in our room she likes to stand over me and watch me sleep while she sends me telepathic messages that she wants me to wake up. When that doesn't work, she reaches out and pats me so hard it's like taking a punch; that gets me going. In fact, that one makes me rise out of bed, often hitting Eric in the process because I come up swinging. :-) Then there are the nights that she gets up and scampers through the house for the bathroom or whatever other nightly errand she feels the need to complete; and turns the lights on in the process! Good Grief!!!
What's the best though is when all the kids gang up on us on one night. We just had one of those about a week ago. We were up with Bradley because he was in the process of losing his battle to pneumonia. We didn't get him down before we heard a crash outside; drunk driver took out a lamp post on the diagonal corner from us. That drama behind us, little boy down, we hit the bed. About two hours later I wake up with a start because there is someone trying to leave the bathroom attached to my room. All I can see is this blurred image of someone ping ponging off the bathroom door frame, the treadmill, the dresser, the bedroom door frame and then I think a bookshelf in the hall and possibly her door frame before silence. As I get my glasses I figure that it must have been one of my kids not an intruder (no outside doors opened and closed - so I am hoping one of my kids!). Check Sydney's room, kid's out, breathing even. Go down to Madison's room, I think it's her because she's curled in the fetal position and her covers are folded back like she just got out of bed but forgot to cover up again. So I cover her up and she laughs, like Candace from "Phineas & Ferb," for any of you who know that particular cartoon...but it's really similar to "Heeheeheeheehee". I laughed out loud, but it didn't wake her up at all. Bradley laughs in his sleep too, only his laughing wakes him up. He saves that for Eric though, he'll fall asleep on Eric's shoulder, then laugh out loud, followed by sit straight up and ready to play! Boy, there is no play at 3 am!!! Anyway, turns out the ping ponger was in fact, Sydney. Quite the little actress that one...and quite clumsy as well.
But here's the kicker, despite how active they are at night, or lack of true sleep...Madison and Bradley are up with the sun! They are programmed in. Sydney; well, she's me in a smaller form. She can sleep like there is no tomorrow. She woke up at 9:30 this morning for the bathroom, I told her good morning and she looked at me and said, "Yeah, but I was thinking of going back to bed." I gave her my blessing and she went back to bed for about a half hour. When she loses sleep, she catches up, always. I'm trying not to be jealous, but well....why lie? HAHA
So Happy New Years! May your new year be full of health, wealth, and happiness...and well, a little extra sleep. :-)
Happy New Year!!!
In honor of the night without a lot of sleep; it makes me chuckle to think about how little, or rather, how random the sleep pattern is in this house. Just when I think I have the littlest guy in a rather peaceful slumber pattern something happens to mess him up or something goes awry elsewhere in the kingdom. Before he had the button, Bradley would put himself to sleep on his own at night. After the button, he couldn't turn and turn and turn again; not unlike the habits of your favorite puppy, until he found his happy place and finally went to sleep. After the button the tube allowed for one, half turn before the machine started beeping and we came running and had to unwrap him. We finally gave in to the fates and held him till he fell asleep, then lay him down for the night - there was still the turning that led to the wrapping that led to the beeping that led to the running....well you get the idea. So we started sending the tubing down his leg and that led to less wrapping, less beeping, more sleeping for us. Of course that was short lived...the Infusion Services Company sent a newer, more user-friendly pump that had a shorter tubing...more wrapping, more beeping. Good GOD! So then we figured some more and came up with the plan to lower his machine as low as it would go and then putting the tubing through the slats to him...more turning, but less wrapping, and way less beeping. Let the sleeping begin! And yet, no, not so much!
You see we have two other kiddos in the house. Turns out the oldest, occasionally sleepwalks. And if she isn't sleepwalking, she's talking. It used to be we would be roused in the middle of the night with the occasional sounds from her room, we knew she was saying something but couldn't make it out. And that trip down the hall we just had to make to see if we could figure out what she was saying usually brought us no new knowledge...she says her piece, turns over and goes back to sleep pretty quick. And then the other night she apparently wanted us to know what she was saying because we got her full name at the top of her lungs: perhaps one of her parents were yelling at her in her sleep??? Not sure why she would yell at herself, but then there are times she yells at her sister too. Maybe she just likes to yell and sound bossy.
The middle kid is a puzzle box in herself. Half the time I have to search for her at night because she has bunk beds in her room and she swaps out the bed she sleeps in at random times. She'll have bad dreams about spiders and ants...creepy crawly things. If she comes in our room she likes to stand over me and watch me sleep while she sends me telepathic messages that she wants me to wake up. When that doesn't work, she reaches out and pats me so hard it's like taking a punch; that gets me going. In fact, that one makes me rise out of bed, often hitting Eric in the process because I come up swinging. :-) Then there are the nights that she gets up and scampers through the house for the bathroom or whatever other nightly errand she feels the need to complete; and turns the lights on in the process! Good Grief!!!
What's the best though is when all the kids gang up on us on one night. We just had one of those about a week ago. We were up with Bradley because he was in the process of losing his battle to pneumonia. We didn't get him down before we heard a crash outside; drunk driver took out a lamp post on the diagonal corner from us. That drama behind us, little boy down, we hit the bed. About two hours later I wake up with a start because there is someone trying to leave the bathroom attached to my room. All I can see is this blurred image of someone ping ponging off the bathroom door frame, the treadmill, the dresser, the bedroom door frame and then I think a bookshelf in the hall and possibly her door frame before silence. As I get my glasses I figure that it must have been one of my kids not an intruder (no outside doors opened and closed - so I am hoping one of my kids!). Check Sydney's room, kid's out, breathing even. Go down to Madison's room, I think it's her because she's curled in the fetal position and her covers are folded back like she just got out of bed but forgot to cover up again. So I cover her up and she laughs, like Candace from "Phineas & Ferb," for any of you who know that particular cartoon...but it's really similar to "Heeheeheeheehee". I laughed out loud, but it didn't wake her up at all. Bradley laughs in his sleep too, only his laughing wakes him up. He saves that for Eric though, he'll fall asleep on Eric's shoulder, then laugh out loud, followed by sit straight up and ready to play! Boy, there is no play at 3 am!!! Anyway, turns out the ping ponger was in fact, Sydney. Quite the little actress that one...and quite clumsy as well.
But here's the kicker, despite how active they are at night, or lack of true sleep...Madison and Bradley are up with the sun! They are programmed in. Sydney; well, she's me in a smaller form. She can sleep like there is no tomorrow. She woke up at 9:30 this morning for the bathroom, I told her good morning and she looked at me and said, "Yeah, but I was thinking of going back to bed." I gave her my blessing and she went back to bed for about a half hour. When she loses sleep, she catches up, always. I'm trying not to be jealous, but well....why lie? HAHA
So Happy New Years! May your new year be full of health, wealth, and happiness...and well, a little extra sleep. :-)
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