It was a cold morning in Japan, and it was colder still because we had to leave our house very early in the morning in order to make the trek from Atsugi to Yokosuka Japan. There is only about thirty miles between the bases, but the traffic in Japan is epic at best. In fact, at one point in our lives Eric and I had been trying to have a third child and one of the reasons we quit the effort was the traffic. I had this incredible fear that I would be naming our baby Yoko as a tribute to the highway that I was afraid I would deliver on. I could see us on the side of the road with curious Japanese stopping to check on us and bringing their cell phone cameras with them. After having delivered two other children my modesty is not as severe as it used to be...but being the sideshow attraction for the Japanese was not my idea of a superb event. So we decided not to have a third child...and then God laughed at us and said: "Here you go!" Apparently a deity that can make it rain for forty days and forty nights doesn't have the time or inclination to acknowledge the existence of Japan traffic. Sure enough, as we rode to our Stress Test appointment to check why I was about a quart low of amniotic fluid, I knew I was in labor, in traffic, and timing the contractions while NOT telling Eric so he wouldn't use his training in Emergency driving to take us down to the hospital by any means necessary. On that day, Bradley was not in a rush to come and had to be coaxed out. In the grand scheme of things it seems silly to have worried...and oddly enough, it never occurred to me what I would call a boy if I had one...I didn't think we knew how to make boys. But, a boy we made, and we made the hospital as well that day. A week later, Eric would break the speed limit again getting us to Yokosuka as I was hemorrhaging...now, a month later...we took a leisurely trip to the hospital and then turned the driving over to the hospital who hired a Japanese driver to take us to meet the Cardiologist that would look at Bradley and tell us the news, good or bad, about the structure of our son's heart.
By then we had received the call from the Pediatrician...the somber quality of his voice still stays with me as he told me over the phone that the Karyotype results were in: Bradley had Trisomy 21 and it was not Mosaic. We had been holding our breath truth be told. We thought that if this was what our son would be diagnosed with, we had hoped it would be Mosaic - that he would have mild developmental delay and only be gently affected. Why did these things stick with us? Not sure really, denial of course is a beautiful thing, insulating you from the truth for however long you need it too. Mosaic could mean less medical intervention necessary and we're a one income family, we might get through this without being buried financially. But no, not Mosaic and not Translocation. Bradley was just Bradley and though he often didn't look to have anything but extra cute and adorable...the truth was it was there.
So we went to Yokosuka, and then they drove us back towards Atsugi. Although I appreciated the effort by the base hospital, we both agreed that our life would have been made simpler with a set of directions either by car or train. You see, I was adept on the trains. Eric was a master in the car. We would have easily found our way there and home and turned a rather long day into a rather short one. The doc squeezed us in during the lunch hour when no one was there. Then I convinced myself to think of this as nothing more than kindness, making room in a busy practice. For it to be anything else was just too much to think about at the time. And when we met the Cardiologist he questioned why we thought our son had Down syndrome. Pardon? He just couldn't see it in Bradley not like in other kids. But alas, we had our diagnosis and we knew...although he had ample experience with kiddos with Down syndrome in the States, here in Japan, the kiddos just looked different.
Bradley slept the majority of his testing...save one poopy diaper in protest. We looked at our son's heart and we felt a surge of adrenaline followed by joy when he told us Bradley's heart was good, was great! No pressure on his lungs suggesting the walls were a good width...no holes, nothing to worry about for Bradley in the world of Cardiology. We were humbled by the news, our prayers that couldn't take away a diagnosis we were afraid of, granted us a little guy with a healthy heart that wouldn't be taken from us before he had begun to live. Suddenly, the extra chromosome seemed doable. Bradley wasn't going to leave us because of his heart.
We hugged in the van home, even slept a little. We had won a victory, we had needed one, and finally we had one. The Baby had a healthy heart. From now on, every doctor we met would ask and we would say with great pride: "Nope, heart is good! No cardiac issues, healthy!" We didn't mean to sound braggy, we just knew that this was SO important. We were proud to share the gift we'd been given in a healthy heart for Bradley. That's the one thing we had, no matter what was going wrong in the rest of his body, we always got to say all was good with his heart.
I was standing in the doorway of Bradley's room in the PICU after his surgery on the 30th. There were six doctors and one Nurse standing around in a semi-circle including me in Rounds. I listened as Bradley's attending went through the information that I knew, the medications he was given during the night. He mentioned the episode of Apnea and the one episode of Unsat for his Oxygen...I nodded as I stood there...I knew all these things. I was in the room for all these things. Then he mentioned the heart murmur....
Um....I'm sorry? What did you say doc? He goes, you know the heart murmur... all I could do was shake my head...this was news to me. Geesh Doc when were you going to tell me? He looked chagrined when he said, "I thought you knew. But it's not bad."
Not bad. The echo in my head seemed loud as I let my logic sort through the ramifications. There's enough bad that not bad means I make a call to let his pediatrician know the result and then I leave it there. Not bad means I can't let this bother me now, I have to leave this one to Bradley's little body to decide where it will go from here. Not bad means that it gets relegated to the same region in my head that has the cyst in his brain - to be brought out when necessary but not before. So now I don't get to say his heart is completely good. Perhaps I was cocky about it when merely I was just desperately grateful. Somehow I got through this litany in my head and was able to rejoin the conversation with the doctors that were ready to send Bradley home. Bradley coming home; now that was something I could refocus on. He may have a murmur, but they're normal enough...and Bradley still gets to come home. With there being no other choice, this is good enough...this is always good enough.
Saturday, February 9, 2013
Wednesday, February 6, 2013
Post Op One Week
Adjusting Back to Home
We brought Bradley home a week ago today. And the for the first couple of days it was if he had never had surgery. He was eating like a trooper, putting away the food, and his regular food. He wasn't as interested in the Ice Cream as I had hoped, and after mowing through a few Popsicles at the Hospital; not so thrilled by the mega box of Popsicles we had at home for him. The girls? Seventh Heaven! Someone other than Mom has to eat all that stuff right?
Saturday dawned and he had mucus and was congested...how is this possible? The kid is on an Antibiotic...but there it is - attack with the Saline Spray...yeah that's SO much fun! Come Sunday he wasn't interested in food and starting this weird choking he does only when he is really sick and can't get his throat clear. With the Fundoplication he can't throw up or really spit out stuff in his throat...so he's at a real disadvantage. At three years old, the concept of clearing his throat is merely something he does if he can copy Dad or one of his sisters. Mom does it and he gives me this pitying look at my pathetic attempts. We also were introduced to our Demon child. Yes, I said Demon child. I met a boy Sunday morning that I had never met before. He was kicking and screaming when he wasn't trying to head butt and bite. And that was just trying to get him to lie on the table in order to vent his tube and change a diaper. Monday was no better, and by the afternoon we were anxious to see his pediatrician. Bradley's pediatrician was thrilled by Bradley's progress and explained why he was in the PICU and why he is having so much phlegm and mucus.
His surgery has a higher rate of complications...so they watch him a lot closer than they do other kids. The Mucus...yeah well, the tool that created almost no blood, left large white scarring where his tonsils used to be. Now, his body is desperately trying to protect him and covering that area until it can heal up some more. As a result, he has more than he can handle. So we resorted to the stronger medication for pain...the less he hurts, the less he cries...the less he cries, the less he creates... Good news? Yep. He ate a pancake and a Popsicle yesterday morning. Another Popsicle for lunch and then one after dinner...the girls watching with a mixture of joy at his progress as he takes considerable bites and concern as the Popsicles are looking to disappear much sooner than they had anticipated. Mixed bag for them really.
He has forgotten what it means to sleep through the night; in truth, he seems to think it is no longer necessary and the day should in fact begin at 4 am or so. And it's not just the slow moaning that comes first like singing...no, he likes to stand up in the crib so I have no doubt that he is wide awake. Sadly, I am not so quick to reach that wide awake stage. So it's been one of those weeks...where there is no sleep in it, and no relief in sight. We spend the evening rocking him to sleep so he doesn't crawl out of his crib, whenever he wakes in the middle of the night - we rock him back to sleep...and during the day when he needs a nap - I rock him to sleep. Bradley, who was learning to put himself to sleep, no longer remembers how or has any inclination towards trying.
These are the days of contradictions. He is sleeping horribly, but rather than falling behind in his developmental progress - he's showing leaps forward. Yesterday morning, he put together a 6 piece puzzle. His educational goal is to do a three piece by his Year Re-Evaluation in Dec 2013. Over-achiever right? :-) HAHA. Making some progress at the ABCMouse pre-school program, and signing every word the girls say that he knows the sign for. Then today, he turned his nose up at his beloved Raviolis and instead pushed for pieces of Mom's BBQ Chicken. Loved it, and kept munching tiny pieces of chicken. Huge success there because I swear I saw some chewing before the swallowing. He takes bites off his Popsicles, he doesn't need it mushed up in a bowl...in fact, he won't eat it that way. When he takes a bite I see tongue cupping and I see chewing...it's truly a beautiful thing to see.
So overall, he is doing much better now. He is improving and he's showing signs that he will do much better without the tonsils and the adenoids. The hearing test showed normal which is fantastic news and he is already doing better with the tubes. So a good decision to have the surgery, give us a few weeks and we might be back to our routine and maybe even doing a bit better! Just plugging along for now. How's your week?
We brought Bradley home a week ago today. And the for the first couple of days it was if he had never had surgery. He was eating like a trooper, putting away the food, and his regular food. He wasn't as interested in the Ice Cream as I had hoped, and after mowing through a few Popsicles at the Hospital; not so thrilled by the mega box of Popsicles we had at home for him. The girls? Seventh Heaven! Someone other than Mom has to eat all that stuff right?
Saturday dawned and he had mucus and was congested...how is this possible? The kid is on an Antibiotic...but there it is - attack with the Saline Spray...yeah that's SO much fun! Come Sunday he wasn't interested in food and starting this weird choking he does only when he is really sick and can't get his throat clear. With the Fundoplication he can't throw up or really spit out stuff in his throat...so he's at a real disadvantage. At three years old, the concept of clearing his throat is merely something he does if he can copy Dad or one of his sisters. Mom does it and he gives me this pitying look at my pathetic attempts. We also were introduced to our Demon child. Yes, I said Demon child. I met a boy Sunday morning that I had never met before. He was kicking and screaming when he wasn't trying to head butt and bite. And that was just trying to get him to lie on the table in order to vent his tube and change a diaper. Monday was no better, and by the afternoon we were anxious to see his pediatrician. Bradley's pediatrician was thrilled by Bradley's progress and explained why he was in the PICU and why he is having so much phlegm and mucus.
His surgery has a higher rate of complications...so they watch him a lot closer than they do other kids. The Mucus...yeah well, the tool that created almost no blood, left large white scarring where his tonsils used to be. Now, his body is desperately trying to protect him and covering that area until it can heal up some more. As a result, he has more than he can handle. So we resorted to the stronger medication for pain...the less he hurts, the less he cries...the less he cries, the less he creates... Good news? Yep. He ate a pancake and a Popsicle yesterday morning. Another Popsicle for lunch and then one after dinner...the girls watching with a mixture of joy at his progress as he takes considerable bites and concern as the Popsicles are looking to disappear much sooner than they had anticipated. Mixed bag for them really.
He has forgotten what it means to sleep through the night; in truth, he seems to think it is no longer necessary and the day should in fact begin at 4 am or so. And it's not just the slow moaning that comes first like singing...no, he likes to stand up in the crib so I have no doubt that he is wide awake. Sadly, I am not so quick to reach that wide awake stage. So it's been one of those weeks...where there is no sleep in it, and no relief in sight. We spend the evening rocking him to sleep so he doesn't crawl out of his crib, whenever he wakes in the middle of the night - we rock him back to sleep...and during the day when he needs a nap - I rock him to sleep. Bradley, who was learning to put himself to sleep, no longer remembers how or has any inclination towards trying.
These are the days of contradictions. He is sleeping horribly, but rather than falling behind in his developmental progress - he's showing leaps forward. Yesterday morning, he put together a 6 piece puzzle. His educational goal is to do a three piece by his Year Re-Evaluation in Dec 2013. Over-achiever right? :-) HAHA. Making some progress at the ABCMouse pre-school program, and signing every word the girls say that he knows the sign for. Then today, he turned his nose up at his beloved Raviolis and instead pushed for pieces of Mom's BBQ Chicken. Loved it, and kept munching tiny pieces of chicken. Huge success there because I swear I saw some chewing before the swallowing. He takes bites off his Popsicles, he doesn't need it mushed up in a bowl...in fact, he won't eat it that way. When he takes a bite I see tongue cupping and I see chewing...it's truly a beautiful thing to see.
So overall, he is doing much better now. He is improving and he's showing signs that he will do much better without the tonsils and the adenoids. The hearing test showed normal which is fantastic news and he is already doing better with the tubes. So a good decision to have the surgery, give us a few weeks and we might be back to our routine and maybe even doing a bit better! Just plugging along for now. How's your week?
Wednesday, January 30, 2013
The PICU
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.
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.
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. :-)
Sunday, December 30, 2012
A Bradley Update
December 30, 2012
We'd been walking a thin line between ill and health with Bradley, and we did it for almost two months. It wasn't something we wanted, but something that felt like it was on a slippery slope for us, the harder I tried to get him healthier the more he declined. In November, he had these tonsils that were huge and sported spots, but the ENT that he had didn't worry about them too much. But the swollen tonsils forced Bradley's tongue out more, his feeding seemed to slow, like he wasn't interested in swallowing anything larger than a pureed food. The idea of chewing, less of a thrill than it had been. One rude ENT was more than I could take and I switched his ENT's. To make a long story short it's like this: I can take a rude staff if the doctor is worth it; the moment the doctor is rude to me; I change. My son does not have to mean everything to you all the time, but for the fifteen minutes he is before you, that's when he better mean everything. So we switched to the Pediatric ENT at UCLA, turns out she's the Head of the department, but she's also really nice. The plan was to take Bradley's tonsils, his adenoids...put in ear tubes and do the Brain Stem Assessment to determine once and for all if our son has any sort of hearing loss. This is important for all the obvious reasons, but our boy tends to panic at certain sounds especially with vibration. So don't laugh with him against your shoulder, he can't handle the vibration of your laughter. Oh and at the time he had a little bit of fluid on his right ear. That fluid grew exponentially until his ear drum burst three days later. What ensued from there on out is the stuff of a parent's nightmare. The reaction to really strong antibiotics, the onset of croup and the immune system compromise that led to Hives and Diarrhea to the point we were concerned he was dumping. You see, simple tummy flu with diarrhea is never simple with Bradley; so this reaction just creates the worst possible reactions in his tummy. He dropped a pound and a half in a week, pounds he can't afford to lose, pounds we worked really hard to accumulate on him.
We spent the next few weeks in and out of the hospital, phone calls over the weekend, phone calls to the Peds GI in Santa Barbara, all desperately trying to prevent further weight loss, further illness, a trip to the hospital for IV rehydration... and that croupy cough wouldn't go away and became worse. The week before Christmas, it became deep and wet. The air stopped moving in his lungs and we started around the clock nebulizer treatments; which Bradley hates! My son is incredibly strong already, and my son is a fighter - Thank you God! - but trying to give him a Nebulizer treatment is a workout. A few in the middle of the night on day two he started to sleep halfway through and those were heavenly. Despite our best efforts though, Saturday am he was awake and he seemed to be breathing very shallow. He was gagging and retching, choking on mucus that I could not suction out or successfully vent enough from his tummy to prevent the retching that can lead to the unraveling of the precious Fundoplication that makes it so he can eat. With nothing else to do; Eric took Bradley to the ER and I sat here at the house waiting with the girls. There is nothing like those hours waiting...I took care of my Farm on Facebook, and built my castle...then couldn't do anything more as the hours dragged on, so I wrapped the rest of the kids' Christmas presents, and when Eric sent the text that said "Pneumonia" I packed my bag. At 6 am I called my mom and asked her to come, and I waited while they were trying to transport my son to the hospital and my mom was making her way to us. I didn't see him until 11:20am. They had to attack the pneumonia with antibiotics and we waited and watched as they fought the pneumonia and the dumping as his digestive system fought against the antibiotics.
I stayed Saturday night, and then because he had the time off; Eric stayed Sunday night and Monday night. We knew that if they kept Bradley passed Christmas day I would have to stay till the weekend nights because Eric would have to go into work in the mornings. Eric and Bradley spent Christmas Eve in the hospital and I left them feeling broken. I couldn't figure out how to be with Bradley and the girls at the same time. The hospital only allowed one parent to stay each night, even though Bradley was in a private room. The docs were fantastic, the nurses...really horrible. But, Christmas morning the doc came in and discharged Bradley so we could bring him home. As Christmas miracles go; well this was a pretty big one. When we walked in the door with Bradley his sisters started crying, both of them. I knew Madison would, as she is a weeper and our most emotional. I knew that things had been as tough as I had feared when Sydney wept like she did. Not hysterical, but uncontrolled and from her soul. And my heart broke a little for them; these two kids that were so strong and so flexible about their life - and yet with each of these episodes with Bradley I wonder if their flexibility will be tapped out and one of them will break. For Eric and I - Every breath carries a prayer, please God let this be the last time; let Bradley's body be as strong as his heart and soul from this moment on. Amen.
How did Bradley adjust to being home? He walked over and dove into a present that Santa had left for him. He unwrapped almost all of that one; but after that he was pretty happy to just tear the bows off of his presents and let mom unwrap for him. He was pretty tired after all. Now post Hospital five days, he coughs maybe once a day and the rattle is gone from his breath. He's doing fantastic! Oh and as for that starting of Pre-school in a couple weeks? No, not right now. Bradley will do his Pre-school at home and then in the Spring we'll revisit the idea of going off to join a Pre-school class. For now, we just have to get him healthy, the rest will have to come when it comes.
We'd been walking a thin line between ill and health with Bradley, and we did it for almost two months. It wasn't something we wanted, but something that felt like it was on a slippery slope for us, the harder I tried to get him healthier the more he declined. In November, he had these tonsils that were huge and sported spots, but the ENT that he had didn't worry about them too much. But the swollen tonsils forced Bradley's tongue out more, his feeding seemed to slow, like he wasn't interested in swallowing anything larger than a pureed food. The idea of chewing, less of a thrill than it had been. One rude ENT was more than I could take and I switched his ENT's. To make a long story short it's like this: I can take a rude staff if the doctor is worth it; the moment the doctor is rude to me; I change. My son does not have to mean everything to you all the time, but for the fifteen minutes he is before you, that's when he better mean everything. So we switched to the Pediatric ENT at UCLA, turns out she's the Head of the department, but she's also really nice. The plan was to take Bradley's tonsils, his adenoids...put in ear tubes and do the Brain Stem Assessment to determine once and for all if our son has any sort of hearing loss. This is important for all the obvious reasons, but our boy tends to panic at certain sounds especially with vibration. So don't laugh with him against your shoulder, he can't handle the vibration of your laughter. Oh and at the time he had a little bit of fluid on his right ear. That fluid grew exponentially until his ear drum burst three days later. What ensued from there on out is the stuff of a parent's nightmare. The reaction to really strong antibiotics, the onset of croup and the immune system compromise that led to Hives and Diarrhea to the point we were concerned he was dumping. You see, simple tummy flu with diarrhea is never simple with Bradley; so this reaction just creates the worst possible reactions in his tummy. He dropped a pound and a half in a week, pounds he can't afford to lose, pounds we worked really hard to accumulate on him.
We spent the next few weeks in and out of the hospital, phone calls over the weekend, phone calls to the Peds GI in Santa Barbara, all desperately trying to prevent further weight loss, further illness, a trip to the hospital for IV rehydration... and that croupy cough wouldn't go away and became worse. The week before Christmas, it became deep and wet. The air stopped moving in his lungs and we started around the clock nebulizer treatments; which Bradley hates! My son is incredibly strong already, and my son is a fighter - Thank you God! - but trying to give him a Nebulizer treatment is a workout. A few in the middle of the night on day two he started to sleep halfway through and those were heavenly. Despite our best efforts though, Saturday am he was awake and he seemed to be breathing very shallow. He was gagging and retching, choking on mucus that I could not suction out or successfully vent enough from his tummy to prevent the retching that can lead to the unraveling of the precious Fundoplication that makes it so he can eat. With nothing else to do; Eric took Bradley to the ER and I sat here at the house waiting with the girls. There is nothing like those hours waiting...I took care of my Farm on Facebook, and built my castle...then couldn't do anything more as the hours dragged on, so I wrapped the rest of the kids' Christmas presents, and when Eric sent the text that said "Pneumonia" I packed my bag. At 6 am I called my mom and asked her to come, and I waited while they were trying to transport my son to the hospital and my mom was making her way to us. I didn't see him until 11:20am. They had to attack the pneumonia with antibiotics and we waited and watched as they fought the pneumonia and the dumping as his digestive system fought against the antibiotics.
I stayed Saturday night, and then because he had the time off; Eric stayed Sunday night and Monday night. We knew that if they kept Bradley passed Christmas day I would have to stay till the weekend nights because Eric would have to go into work in the mornings. Eric and Bradley spent Christmas Eve in the hospital and I left them feeling broken. I couldn't figure out how to be with Bradley and the girls at the same time. The hospital only allowed one parent to stay each night, even though Bradley was in a private room. The docs were fantastic, the nurses...really horrible. But, Christmas morning the doc came in and discharged Bradley so we could bring him home. As Christmas miracles go; well this was a pretty big one. When we walked in the door with Bradley his sisters started crying, both of them. I knew Madison would, as she is a weeper and our most emotional. I knew that things had been as tough as I had feared when Sydney wept like she did. Not hysterical, but uncontrolled and from her soul. And my heart broke a little for them; these two kids that were so strong and so flexible about their life - and yet with each of these episodes with Bradley I wonder if their flexibility will be tapped out and one of them will break. For Eric and I - Every breath carries a prayer, please God let this be the last time; let Bradley's body be as strong as his heart and soul from this moment on. Amen.
How did Bradley adjust to being home? He walked over and dove into a present that Santa had left for him. He unwrapped almost all of that one; but after that he was pretty happy to just tear the bows off of his presents and let mom unwrap for him. He was pretty tired after all. Now post Hospital five days, he coughs maybe once a day and the rattle is gone from his breath. He's doing fantastic! Oh and as for that starting of Pre-school in a couple weeks? No, not right now. Bradley will do his Pre-school at home and then in the Spring we'll revisit the idea of going off to join a Pre-school class. For now, we just have to get him healthy, the rest will have to come when it comes.
Monday, December 10, 2012
The Journey Towards School
We spent the morning with the School District Psychologist. Looking back I can see where she is hailed for being so great, she truly is great. She was engaging with Bradley and she moved him quickly from one little test to the other and didn't give him time to get too far off the path. Sure Bradley discovered the joy of blue plastic coffee cups and wouldn't let them go until she persuaded him to give them up for the white plastic bowls that were so intriguing...yeah, well then he wouldn't give those up either...where does that leave us I wonder? You could see the wheels turning in her head as she moved him through his tasks and made her notes...I couldn't help but wonder what she was writing. Have I done enough? In my head I know where the girls were when they went to school and I know he's not there at all. I mean they went somewhere around 4 years old and the "pre-school" Sydney went to for drop in care in Japan was not actually teaching all that much more than socialization. But socialization is truly important and he hasn't been getting too much of that. He can hold his own with older kids, he rules the roost with his two sisters, but how he'll be with other kids I am not so sure. I have seen him try to pull a baby into his lap because he is purely fascinated, but as for playtime, well - not yet. We've encountered kids at the playground but I've watched the moms turn away and I have watched as the little ones are just too fast for Bradley. At the moment of play initiation, he's not quite ready to play. By the time he figures it out they are already on their way to other tasks and he's left playing with me. Although I rock as a playmate, my higher stature is not conducive to encouraging play with other little people.
Things are set to change in January, and yet they might not. We have been preparing Bradley to start Pre-school with the School District after he turns 3. He turns 3 on January 9th, where on earth did the time go? All along the way the Therapists that have been working with Bradley have been giving warnings to the school to let them know that there might be the possibility that Bradley might not be ready for school out of the home. He is still a bit fragile. Right now it is up to his pediatrician to give the final say, not that he doesn't listen to me, he does - but he is even more cautious than I am. I feel like this decision is in good hands. :-) Anyway, we thought he was going to be good to go, I mean the last few colds he has had he's not gagged or retched, so we haven't had to change his feeds at night, all good signs. And then last week he ruptured his eardrum. Yep, he had a sleepless night and a lot of tears and since he could only tell me he "Hurt" with his signs but wouldn't say where, I chose the high road, I gave him Ibuprofen. He fell out and got a few hours sleep, was a little cranky that morning but not more than a sleepless night should cause and I thought perhaps it was a tooth? Yeah, not the first time I've been wrong. Later that day, my boy is giggling playing with me and I look over and he has stuff coming out of his ear. It is one of those moments of shock, I've never seen this before, where your mind takes a moment to actually think and try to determine if there is in any way a positive reason for this gunk to be coming out of his ear. Considering he does not have any Tubes in his ears the answer is a simple, Nope. The only good thing for the rupture is that the pressure build up is over. He doesn't hurt anymore.
Strong antibiotics and ear drops to help him through this, and his pediatrician is looking at Eric and I going..."School huh? Well, I guess we'll just have to see about that won't we?" So perhaps our little guy will start school in the Spring once all the gunk has passed through the school and the Spring can bring some better days for him to try this school thing. We're not certain as yet, but it's on the table. I think at this point we'll be more surprised if they clear him to go for even two out of five of the days before Spring.
Tomorrow he has even more Assessments for school. It seems like that's all we get to do right now. The school comes in for their Assessments and then his Therapists have been doing their Assessments every time they come. I now dislike the word "Assessment" simply because in our life it has become trite. I have to allow them to assess where he is not and try not to intercede with all the things that he CAN do. Turns out they aren't so interested in what he can do - and I am not naive, I understand why; but the constant focus on what he cannot do is also like having someone sitting on your shoulder with this constant mantra running through your head, "Did you forget he has Down syndrome? Well, we want to remind you that he has Down syndrome. There's stuff he can't do, there's stuff he won't learn." And you can only knock that little devil off your shoulder so many times and beat the snot out of him before the good angel on the other side gets all angry at you. But it took her a bit to notice you were being violent because she's over there marveling at all the stuff he's doing and just how downright cute he is. But eventually, she noticed, and now I have to be good and try to ignore that little demon on my shoulder making my life Hell.
I know that there will be limitations to Bradley's life. Until one of my kid's becomes a Rocket Scientist or a Neurosurgeon, I know it's possible they could do that....but I know my girls can't break into the NFL or Major League Baseball, and though miffed about baseball, I'm okay about it too. But I am not entirely certain that Sydney won't be President someday like she plans, so I have to leave a wide field of options open for my kids. I try to be positive and let Bradley take the path he is meant to take and keep the doors opening for him. He has to clear the obstacles, I can't clear all of them, but if he can clear them, then I have to make sure each door comes open. I don't want to delude any of us on what he can do, but today - I don't know what all he'll be able to do in his future so I don't see the wrong in trying to prepare him for anything, to encourage all of us that he can do great things. Are his great things going to be what you think is great? Perhaps not. Maybe his great things are to simply live a great life with independence and purpose. Not so different from what I want from my own life. Do I want to write the next great American Novel? Undecided, I just like to write. But I have to plug away at what I enjoy so that he knows that he should plug away at what he enjoys...so that my girls know that they need to work and fight and plug away at what they will most enjoy. My approach is not that different between the kids, I expect them to do their best, as long as they do that, I'm pretty happy.
My little boy did his best today and he will try his best tomorrow. If his level is more two year old than almost three, then that's okay too. I can just keep offering the knowledge to him and he can take it as he can, bringing it into his brain for processing and for keeping. In a couple of weeks, we will have his "IEP - Individualized Education Plan" in hand, and for at least three months we won't be talking about this all that much. The mantra can fall off my shoulder with all of my self doubt and give me a break for a few months and Bradley and I can just work on learning whatever comes next in the world of learning that is before us.
I have to be honest though, that little Devil is not going to quit my shoulder, fueled by my own sense of not doing enough, not doing it right, somehow falling short where Bradley needs me most - he just picks a new mantra to whisper in my ear. For some reason though, my little Good angel on the other shoulder ignores the fights that I have with the little snot. She knows that I am doing my Best, and with that knowledge she thinks these fights provide some excellent exercise for me.
Things are set to change in January, and yet they might not. We have been preparing Bradley to start Pre-school with the School District after he turns 3. He turns 3 on January 9th, where on earth did the time go? All along the way the Therapists that have been working with Bradley have been giving warnings to the school to let them know that there might be the possibility that Bradley might not be ready for school out of the home. He is still a bit fragile. Right now it is up to his pediatrician to give the final say, not that he doesn't listen to me, he does - but he is even more cautious than I am. I feel like this decision is in good hands. :-) Anyway, we thought he was going to be good to go, I mean the last few colds he has had he's not gagged or retched, so we haven't had to change his feeds at night, all good signs. And then last week he ruptured his eardrum. Yep, he had a sleepless night and a lot of tears and since he could only tell me he "Hurt" with his signs but wouldn't say where, I chose the high road, I gave him Ibuprofen. He fell out and got a few hours sleep, was a little cranky that morning but not more than a sleepless night should cause and I thought perhaps it was a tooth? Yeah, not the first time I've been wrong. Later that day, my boy is giggling playing with me and I look over and he has stuff coming out of his ear. It is one of those moments of shock, I've never seen this before, where your mind takes a moment to actually think and try to determine if there is in any way a positive reason for this gunk to be coming out of his ear. Considering he does not have any Tubes in his ears the answer is a simple, Nope. The only good thing for the rupture is that the pressure build up is over. He doesn't hurt anymore.
Strong antibiotics and ear drops to help him through this, and his pediatrician is looking at Eric and I going..."School huh? Well, I guess we'll just have to see about that won't we?" So perhaps our little guy will start school in the Spring once all the gunk has passed through the school and the Spring can bring some better days for him to try this school thing. We're not certain as yet, but it's on the table. I think at this point we'll be more surprised if they clear him to go for even two out of five of the days before Spring.
Tomorrow he has even more Assessments for school. It seems like that's all we get to do right now. The school comes in for their Assessments and then his Therapists have been doing their Assessments every time they come. I now dislike the word "Assessment" simply because in our life it has become trite. I have to allow them to assess where he is not and try not to intercede with all the things that he CAN do. Turns out they aren't so interested in what he can do - and I am not naive, I understand why; but the constant focus on what he cannot do is also like having someone sitting on your shoulder with this constant mantra running through your head, "Did you forget he has Down syndrome? Well, we want to remind you that he has Down syndrome. There's stuff he can't do, there's stuff he won't learn." And you can only knock that little devil off your shoulder so many times and beat the snot out of him before the good angel on the other side gets all angry at you. But it took her a bit to notice you were being violent because she's over there marveling at all the stuff he's doing and just how downright cute he is. But eventually, she noticed, and now I have to be good and try to ignore that little demon on my shoulder making my life Hell.
I know that there will be limitations to Bradley's life. Until one of my kid's becomes a Rocket Scientist or a Neurosurgeon, I know it's possible they could do that....but I know my girls can't break into the NFL or Major League Baseball, and though miffed about baseball, I'm okay about it too. But I am not entirely certain that Sydney won't be President someday like she plans, so I have to leave a wide field of options open for my kids. I try to be positive and let Bradley take the path he is meant to take and keep the doors opening for him. He has to clear the obstacles, I can't clear all of them, but if he can clear them, then I have to make sure each door comes open. I don't want to delude any of us on what he can do, but today - I don't know what all he'll be able to do in his future so I don't see the wrong in trying to prepare him for anything, to encourage all of us that he can do great things. Are his great things going to be what you think is great? Perhaps not. Maybe his great things are to simply live a great life with independence and purpose. Not so different from what I want from my own life. Do I want to write the next great American Novel? Undecided, I just like to write. But I have to plug away at what I enjoy so that he knows that he should plug away at what he enjoys...so that my girls know that they need to work and fight and plug away at what they will most enjoy. My approach is not that different between the kids, I expect them to do their best, as long as they do that, I'm pretty happy.
My little boy did his best today and he will try his best tomorrow. If his level is more two year old than almost three, then that's okay too. I can just keep offering the knowledge to him and he can take it as he can, bringing it into his brain for processing and for keeping. In a couple of weeks, we will have his "IEP - Individualized Education Plan" in hand, and for at least three months we won't be talking about this all that much. The mantra can fall off my shoulder with all of my self doubt and give me a break for a few months and Bradley and I can just work on learning whatever comes next in the world of learning that is before us.
I have to be honest though, that little Devil is not going to quit my shoulder, fueled by my own sense of not doing enough, not doing it right, somehow falling short where Bradley needs me most - he just picks a new mantra to whisper in my ear. For some reason though, my little Good angel on the other shoulder ignores the fights that I have with the little snot. She knows that I am doing my Best, and with that knowledge she thinks these fights provide some excellent exercise for me.
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