Music Part Three

The Best Moments

I briefly touched on the idea of listening to the girls singing in the backseat as we drove.  Back then the words were never right and the tone was off and everything was slightly off-key.  But the harder they tried the better it was.  We progressed to words are right, tone is good and mostly on-key…but we graduated to the point where Madison got to this point first.  I hope so, she is two years older than her sister.  That being said, this left a wide open door for her to sing at the top of her lungs.  I began to have to ask her to turn down the volume a bit.  I couldn't hear myself think let alone Sydney at all.  Well of course this graduated again to the point where they started competing at the top of their lungs.  Nothing like hearing a little Daughtry screaming in your ears.  But we seem to have worked that out too; and though it isn't perfect harmony, they tend to sing along with the music and more with the music, and believe me – that is music to my ears. 

They both like to see the videos, but mostly they like to see the videos from YouTube where people add the lyrics; as they like to learn the songs.  It’s pretty cute, and you wouldn't think so until you come around the corner and you see the look of complete concentration that Sydney has on her face as she sits at the desk, eyes glued to the monitor, brain absorbing every word – so intense that she doesn't even know you’re there.   What follows are the days of singing: alone in her room, walking through the living room, at the top of her lungs in the shower, at the kitchen table during meals, or homework, or ….well, any time.  But it can be disconcerting when she starts singing: “Lover, lover, lover - you don’t treat me no good no more.”  What?  Or even better: “Rain makes corn, corn makes whiskey, whiskey makes my baby feel  a little frisky.”  Who knew that Country music held so many landmines!   We listen to everything, we just love music.  While we were in Japan her favorite songs were: “Runaway Train” by Daughtry (he calls it “Breakdown”) and “The Highwayman.”  In fact, when we returned to the states, until Eric bought his truck we couldn't listen to the IPod in the car.  When we finally heard the song again, I pull her out of the booster seat and she looks at me and says: “Wow, I've missed the Hymen song Mom.”  Luckily, Sydney has been training me with her oft times stunning comments, so No, I didn't drop her.   I looked at Eric, “To think I was worried about the use of the B word that means you have no parents in the song, I missed THAT part in it!”  I looked at Sydney…  “Highwayman… Highwayman Sydney.”  To which I just get that Sydney shrug and on we go. 

Madison has her radio in her room that played her IPod Shuffle and also the Touch she has now that her grandparents got her.  Any time you walk by her room she is in there dancing and singing with her radio.  “Just Dance 3” and “Just Dance 4” she’s your girl.  She dances in the car, at the store, at the dinner table at home or out…she’ll be standing perfectly still and a moment later for no reason and without warning all of sudden she’ll start busting out with some crazy dance moves.  Her lips are moving, her eyes have a faraway glint and she’s rocking out; completely oblivious to the surprised stares of anyone around her. 

And then there’s Bradley.  He and his Mom spend a considerable amount of time dancing…just me and him on our own during the day.  Life can’ t be all puzzles and blocks…sometimes you have to have fun too!  Turn on Imagine Dragons, “It’s Time” and on his own, Bradley starts tapping out the rhythm, clapping and patting his legs…so yeah, that’s one of our new favorite songs!  At night, after some books we turn on music and let him relax to the calmer music in our ITunes and it’s not unusual to hear Bach and Vivaldi open for Rascal Flatts or Blake Shelton or Suzy Bogguss. 

But I promised the best moments didn't I?  So here is one of our best moments:

One of the times when Bradley was really sick, he was miserable and listless but unable to fall asleep.  The girls were home from school and I was desperate to help Bradley get a nap and feel a little better.  So I was on YouTube, pulling up videos just to keep Bradley occupied and hopefully stop the tears.  The girls gathered around us and I switched to videos with lyrics at their request.  While I sat with Bradley on my lap, I had Madison on one side and Sydney on the other.  I pulled up their favorite slower songs and they sang them to their brother: “A Thousand Years” and “God Gave Me You” were the last two they sang with the second finally drifting him into much needed sleep.   It was a perfect moment of peace.  It was a perfect gift and I still don’t know who needed the gift more, Bradley or me…but it Blessed us both.

So do they sing loud or somewhat off-key?  Sometimes.  Do they work at driving me crazy on a daily basis…oh yeah, you betcha!  Do they sometimes lose sight of the fact that they have a little brother and try to ignore him…uh-huh… but they are 8 and 10 after all.  These things prey on me at times because of the potential negatives they can bring.  But I hold onto this memory, this moment in time when everything was okay and their love for their brother meshed with their love of music and they gave him just to him because he needed it, and at the same time gave me the same thing.  He won’t remember the moment, but he will remember the love because these girls can do no wrong as long as they stay with him…let them walk out of the room and all bets are off!  J  

Music Part Two

Bradley's Love of Music

I think Bradley's love of music happened in the womb.  I was always playing music.  I thought he might come out spouting grammar rules as well, but luckily that hasn't happened as yet!  But after he was born I sang to him just like I did with his sisters.  There was a certain lullaby that I wanted to sing to him, one that I had sang countless times to the girls, but the lyrics hit so close to home the first time I tried I burst into tears.  So I avoided it, and I sang other songs to him.  When he laughed at me when I sang him "Twinkle, Twinkle Little Star" I tried not to take offence.  As I told him then, "You're a baby, what do you know?"  And yet the little laugh was so very cute, I kept singing it to him anyway.  I had also taken to singing the song from Disney's Tarzan, "You'll Be in My Heart."

And then it happened, one day Eric looked at me and reminded me that I had yet to sing "Baby Mine" to him.  Guilt coursed through me.  I had wanted to sing it to him and I had tried but the lyrics had defeated me:  

Baby mine, don't you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine.

Little one when you play
Don't you mind what you say
Let those eyes sparkle and shine
Never a tear, baby of mine.

If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for
The chance to hold you.

From your head to your toes
Your not much, goodness knows
But your so precious to me
Cute as can be, baby of mine. 


source: http://www.lyricsondemand.com/miscellaneouslyrics/lullabylyrics/babyminelyrics.html

I was terrified that I was stopping because the line "So precious to me" might not be true.  Was that true for my son and I?  Were his sisters more precious to me than him, was that why I didn't want to sing the song to him?  The way he stared into my eyes with such trust and his only way to tell me how much he loved me, I didn't want to believe that there might be something lacking in me.  His incredible blue eyes looked into my soul and didn't flinch away - surely that meant I wasn't truly lacking right?  And though it tore at me to sing "Baby Mine", it wasn't like I wasn't choosing lullabies that had no heart or were not sweet.   "You'll Be In My Heart" the short version from the movie or the Phil Collins version whenever all the words came to me, certainly packs a sweet punch:


Come stop your crying
It will be all right
Just take my hand
Hold it tight
I will protect you
from all around you
I will be here
Don't you cry
For one so small,
you seem so strong
My arms will hold you
keep you safe and warm
This bond between us
can't be broken
I will be here
Don't you cry
'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more
You'll be in my heart
No matter what they say
You'll be here
in my heart always
Always

Being the person I am, I looked at the lyrics in both songs and let them roll through my mind.  I realized that I was stumbling over the idea that "Baby Mine" from Dumbo was intended to be sung to a little elephant whose big ears made him different.  The infant in my arms was different as well.  In fact, there was nothing I could do to change this and just as that little boy in the movie would be hateful to Dumbo and hurt his feelings; I knew then and know now that there will be those that will hurt my son's heart and his spirit.  I can try to stop it, I can advocate on his behalf and try to ease the way down the path he has to follow, but all I truly know is that I will be there when he needs me.  There is a bond that can't be broken between Bradley and I and it has everything to do with how incredibly precious he is to me.   What I also recognized what that I chose a lullaby that would soothe my son but also rang with a fierce protective voice that circled in my head and settled into my heart.  Understanding the needs of my heart helped to ease the guilt that I was feeling and now, I sing both to him...because they are both true.

Music

It's About the Music

My girls love music.  I sang to them when they were babies and it couldn't have been all bad because they would ask me for their favorites as they got older.  And as they got older they would sing to their baby dolls and it felt good to me.  I had inadvertently given them something more than a way to fall asleep at night, I had taught them how to comfort themselves and others through music.  And we would dance all over the house.  It was our thing, we loved to mess around and dance in the house - the girls went on to dancing on stage through Ballet and the Jazz.... When we were in Japan, they rode everywhere with me, going to most of the lessons that I taught.  Honestly, if my girls hadn't been so incredibly cute and sweet (not to mention really polite) I am not sure how many students I would have had.  I mean I'm not saying I'm not a good teacher, but couple that with adorable (them, not me) and my students kept adding to my list of clients and my workload.  Some of my fondest memories are driving my little Capa, my girls riding shotgun from the backseat and my Ipod playing music to entertain them on the way.  We always had a little American Idol in our car, we didn't care who was or wasn't listening and frankly who might be watching.  We'd sing...some of us better than others.  It was all about Daughtry and "High School Musical" preferably the third one.  Being little they couldn't always understand the words, so that was my role, I would sing along too - they'd learn it from me and then they'd sing.  They weren't on key or anything, but then they were 4 and 6...and then some.  The only things that have changed has been their ages and their growing musical ability.  

Fast forward to this morning and taking the girls to school.  Madison sits in the front now, because the law says at 10 she can.  I don't dispute this, though I balk at the freeway; but then I am the total overprotective parent so well, deal.  So Kelly Clarkson is on the radio with her newest song "Catch My Breath" and as I drive I am listening to the concert from my girls as they both pick up the song and sing along, without error and when it comes to Madison and incredible amount of passion.  At the same time, she is dancing in her seat.  Again, I am left with this notion that I could care less who is watching as we make our down the street; the important thing is that both of my girls are happy, in this moment, singing at the top of their lungs a song that could easily become their anthem...that mantra in your head that plays over and over to help you get through the things that life will throw at them: 

Now that you know, this is my life, I won't be told it's supposed to be right
Catch my breath, no one can hold me back, I ain't got time for that
Catch my breath, won't let them get me down, it's all so simple now

But isn't that what music is for? To be that soundtrack we keep in our heads, that group of songs that plays to help us get through life. And wouldn't it be great if there comes a day when the girls each have this moment in their lives where they won't be held back or put down? Wouldn't it be great if this could happen and not be a result of something connected to their brother?

As parents, Eric and I worry about Bradley all the time, everyone knows this. On Facebook we keep updates to "Bradley's Buddy Brigade" and those that love Bradley will let us know that they will pray for our son, they will think of him and send him their best healing wishes. These are the things that we combine with our own faith to help us make sense of all the things that Bradley has been through. I keep the girls a little more protected, they're on there...they would be insulted otherwise, but they haven't their own page like their brother. They are both so healthy, so smart, so amazing...their brilliance is not in their intelligence, though believe me when I say with a nod to humility - somehow God gave me two incredibly smart little girls to raise - but theirs is a brilliance from the spirit that shines through their eyes and is difficult to miss. For those that lack the spark they have it can be difficult to view and jealousy has already reared an ugly head to bash at them. But my girls are resilient and they are fighters. I want to say they get it from me...but they are a nice blend of Eric and I - in fact, they took all the good things that we have and they blended them into who they are so much our influence is considerably watered down. Anything bad they got strictly from their Dad...well, except that stubborn streak, and maybe the temper...and well....never mind why point fingers.

So despite the squabbling that follows every morning with these two girls, we had a good morning.  They sang, they danced, and as they left the car to head into school they each turned around and waved to me and their brother. Both left me with a bit of internal music playing in their heads, a jig to their walk letting me know that some song was playing in their minds.  Some song, perhaps Clarkson's had been added to their internal IPod that would play there throughout the day. Even as Madison disappeared around the corner, Sydney with her fingers signing "I Love You" practically skipped away but turned every two steps to kiss her fingers and then sign "I Love You" to me.

Bradley has his own music connection, but that's for another entry. 

Three Year Anniversary

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. 
 

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?

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.

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!