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! 

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. :-)

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.

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. 

Keeping Failure in Perspective

Not sure what the fascination is with the DVD and VHS cases that draws kids, but it's similar to flies to honey, or ants to any room in our house right now.  Just know, that's a lot of ants and a lot of hassle.  But that's really here nor there, the idea here is this: little kids love to pillage the orderly and prettily organized shelves that we have painstakingly spent the time to alphabetize and organize in a way that quickly makes absolutely no sense whatsoever.  It's a gift and in their minds it is their right.  And perhaps it is a right of passage.  Both my girls did it, so it's a good thing that my son has moved into his rightful place as heir to the chaos that we call our Video Tower.  Here's a problem though - where the girls were told over and over to stop and they got it; Bradley is not as great at catching on so quickly.  A lot more No's involved and I don't enjoy that.  Especially since he'll pretend utter distraction by something else then I'll look over and he's up to his elbows in the Blue-Ray drawer.  Grr... 

Being a true fan of Mickey Mouse, Bradley seems thrilled by the introduction of the Christmas movies that we let the kids start after Thanksgiving.  Just as his older sister used to request the Mickey Mouse Christmas movies over and over and over and over....and well, over...you get the idea, I see that in him as well.  That gives me comfort.  I want to believe that I can encourage his brain to grow and to help him become as smart as he can be so that he can go as far as he could possibly want to go in his life.  I watch him now and I don't always see the unable parts of him, I try to always focus on the able parts.  I want to see him for who he is and not dwell on who he might not be able to be.  I try not to let other's accomplishments make me start pushing him; and that's not so easy let me tell you.  I learn that another kid at 4 with Down syndrome, knows her ABC's and I recognize that his strengths are right along those gender biased lines that make him great at his Gross motor skills.  He can stack the blocks, throw the balls, kick them, kick the blocks...but as for ABCs...well, sometimes I can get the first three sounds...does that count?  I mean how can the little boy say his ABCs when he isn't even verbal yet?  It makes me want to push him to learn them so I know he at least recognizes them; but is that what I should be doing?  My girls didn't learn their ABCs till they were 4, so I have been brushing along that same plan...I mean a plan of some kind is better than no plan, right?  So in theory yes; however, Bradley has to start things earlier than we did with the girls if he can learn them somewhere along the same timelines.   I realized last week that he is about a year or more behind other kids his age - already.  A little guy who is ten months younger than Bradley was vastly developed past my little guy.  I'm not sure it would have bothered me so much, if even at all if there hadn't been such an interest in the typically developing little boys that my daughters' so eagerly wanted to play with.  I couldn't help but wonder where I've gone wrong with them.  They ignored their brother and considered it punishment to have to play with him for a few minutes while their Dad and I helped out with the meal prep and clean-up.  It was the worst half hour of my daughter's life, and that was all I asked for. 
 
I spent the day taking turns with my husband taking care of Bradley.  We were his playmates while our girls played with the others.  And it gets worse, mine were the oldest, they were the ones setting the examples.  And the example was that it was okay to ignore the little boy that is different.  And I thought about all the readings I have done, all the research into how to help siblings with someone with special needs in their lives.  How some kids rise to the occasion to be staunch defenders, exceptional advocates that love their siblings...and then there are those that comment that when they went off to college it was like they were finally free.  Some didn't even mention that they had a sibling that is different, embarassment or their own need for normalcy doesn't matter so much really when the need was there.  Because Bradley has so many health issues and the girls are so young, I don't put a lot of pressure on the girls to learn to care for their brother. When they ask I teach, but I don't assign them a job, I don't tell Madison to go vent her brother; don't ask her to change his diaper all that much either.  When she says she wants too, I let her go.  Once school started their desire to play with their brother changed too.  No longer is it fun or cool to play with Bradley...or rather, if they can be crazy and take over his toys then they want to play, but if they have to let him play with his toy - well, they aren't interested.  Again, where did this go so wrong?  Do I think they love him, yes, I do.  But now I worry about it, I worry about them, I worry about Bradley.  There are others in our family who aren't interested in having anything to do with Bradley, and I feel sorry for them, but everyone must make their own choices regarding this situation.  I try to keep him around the people that love him and want to be with him.  That's not to different than for any of us is it?  I want to be with the people that want me there.  There are some who could care less if I am part of the group or not, I don't want to be there.  I want to be where people are happy by my presence, that's what I want for my son. 
 
So I'm trying to keep this in perspective.  In another year, Bradley will have almost a whole year of pre-school under his belt and all the learning and developing that comes with it.  Who knows, he might even be more verbal by then, if not he'll be a little better at expressing himself through his signs rather than just responding to me or Dad.  Perhaps he'll be conversing with the girls by then and they'll feel more connected to him.  And he and I are working on that alphabet and that potty training (for him, not me...I've managed both thanks!) so we'll just have to see. 
 
I'm hoping this is just a phase, a single day of an epic fail that will not be a part of the lifetime they can have with their brother.  Eric and I will be with him every step of the way, God willing that is for a good, long time. 
 
 
 
 
 

It's About Independence!

November 10, 2012

Bradley has been showing signs of interest in this whole potty training thing.  We know that this can be quite a huge struggle and then triumph for any kid, but especially our little guy.  So we got him a potty to get him familiar with what it is and take away all the weirdness of the thing…well as much as you can anyway.  He seems to like it and to be interested enough in it that he sits down every night on it just before he gets into his bath.  But we’ve noticed the potty has some flaws, like maybe it wasn’t meant for little girls more than little boys.  Yeah sure, they say it is for boys too and even include a diagram on how to use for little boys in order to prevent overflow…but um…yeah, it takes a special yoga position to get parts in the right place that would keep the stream in the pot.  And as I am a girl and have successfully potty trained two girls, I am a little unsure about training a little boy… I mean, does guiding the hose hurt, or is that the idea behind this tiny opening for boys, if you guide the hose down will he then shoot down and not out of the potty?   I’m willing to be the consistency beacon on this mission, but I think that Eric should be taking point on this; I mean it only seems fair.  That’s like our deal that when it comes time to have, you know, “The Talk” I told Eric I would handle the girls and he gets to have the boys.  That was when we first got together though, before I learned I would be handling Algebra and “The Talk” twice.  He only has to have it once, and we aren’t even sure how much of “the Talk” he has to have with Bradley or when.  But that is a conversation for another day, years down the road. Whereas, Madison will be having her “Welcome to Puberty Movie” in April and she and I will have to have some version of “the Talk” over Spring Break.  So yeah, I’m putting Eric on this boy potty Point thing.  So back to this potty thing, this strange potty shape that is leaving us baffled is not hypercritical; after all, we’re just starting. 

So last night before bath we get him stripped down and the girls come running, “We want to see Bradley go peepee in the potty for the first time!”  We’ve had him sitting down before the bath every night for about ten days now. 

The Realist in my thought, well…that’s gonna take a while.  But I merely said, “Well, don’t be disappointed if it’s not tonight, we’re just getting started, but come on in.” 

We sat him down, should have worried more about that yoga positioning, and I said to him, “Want to go peepee in the potty Bradley?” 

Would you believe he did?  And would you also believe that we were so shocked that neither of us even tried to stem the flow by moving him around.  One: it was just “Wow, he’s going”.  And then it was, Two: “HE’S GOING!”  don’t mess up a good thing! 

So we cheered and we fist bumped and we hugged him and as unobtrusively as possible Dad and I both wiped a tear or two away, cause believe it or not…this is just that big! 

Will he go again tonight?  Don’t know, but we know he has, and that opens the door of optimism.  Perhaps with enough repetition and work we can get this potty training under control before he starts school.  Will he be going to school in big boy pants?  Geesh, who knows?  I didn’t think he’d even go yet, so who knows what he’s going to do tomorrow.  But I know that I’m pretty proud of him right now.  And I feel like every other parent with their kid starting their first foray into being independent in the bathroom.  It’s about being his own person, about being able to move a step away from mom and dad.  This is huge for every kid, it doesn’t matter how many chromosomes you have when you do it.  J