Happy Halloween 2015!!

Thank goodness for Halloween.  And I mean that sincerely.  What a perfect chance to be your favorite hero, that scarer, or that wish...and nobody cares.  In truth, most people seem to love the attempt to be whatever you're going to be.  Me, I kind of feel like you should make some attempt to dress up before you come walking up to me saying "Trick or Treat."  But I'm kind of picky that way.

So this year, Madison was Minnie Mouse and Sydney was a Goddess.  Neither of my girls ever choose something scary.  I didn't get it before, but I understand now.  They don't want scary because both of them get scared easily.  And one of them, Madison, giggles in response to being scared even as her eyes start leaking anxious tears.  Plus, neither gets to wear make-up, though Madison gets to wear a little bit as she is learning how to apply it without looking like a Hooker.  Is it still PC to say Hooker or do I have to say something like Independent Sexual Contracter?  Just wondering, probably best as a topic for another day.  Anyway, they don't know too much about those Hookers, or ISCs, or they would probably want to be one for Halloween.  Lots of make-up, high heels and questionable clothing... ?  Yeah, I can totally see one if not both signing up for that one of these years.  But this year was pretty tame, and though I don't remember Minnie wearing a lot of make-up and lipstick...she sure did tonight.mmand she had to have her nails match her dress, although I kind of get that.  Sydney had to be 'flawless', I told her we'd go for 'pretty darn good'.  Luckily, that worked out pretty well.

Bradley was Obi Wan Kenobi...and he had an awesome year.  He wasn't a huge fan of the boot attachment that laid over the top of his shoes, so he pulled up his pant legs quite a bit, but that paled in comparison to Mom putting gel in his hair.  However, he did find great enjoyment in trying to figure out that spiky hairdo.  We strapped down his boots and went to see our old neighbors, he enjoyed them very much, their puppies even more.  Not sure how long or far he would walk, Eric brought out his stroller...Bradley ran and immediately climbed inside it, a big surprise for us.  He'd never done that before.  As we started our treat hunt, he thought he could climb out for a house, and then jump back in.  And he tried this for two houses before we put a stop to that dangerous behavior and he just walked with us.  While he walked he was saying "Hi," and "Bye!"  Complete with fantastic waves.  He can't say "Trick or treat."  But he had a lot of please and thank you signs that he worked very hard to provide.  He trucked along until after the second house that scared him, after that he was done.  We gave him a small break then tried one more time, but he gave it a turn then wanted back in the stroller.  I am so proud of this little boy, he sure did a great job, and his efforts were not lost on those he met.  He was really cute and that was not lost on the candy givers,either.

Tonight he was merely a young Jedi, a really cute one, and no one mentioned his extra chromosome or closed any doors to keep him out.  He gathered candy as quickly and with as much skill as his two sisters.  He still would very much like to just knock on doors more than get candy, but that candy is a nice addition as well.

We walked until  the girls were walked out, then came home and watched the Royals game on DVR...I barely managed to not have a heart attack and in the end we won!  Such a great game!

The kids are long gone to bed and we are winding down our night and prepping for tomorrow 's Buddy Walk in Anaheim, our first in a new venue...should be interesting for us.  So, look for some bonus material as I catch you up to date about our 2015 Buddy Walk.

Until then, Happy Halloween, stay safe out there but also have fun!

And as always, for everyone that came along for this incredible journey, thank you for helping me to create this blog and to be a part of the 31 for 21 Blog Challenge.  Creating Awareness in order to find Acceptance!

Happy Saturday and Happy Halloween!

Snuggles and Cuddles

I had always hoped that my girls would be so close that I would come in to find them snuggled up together in the same bed by choice. Or that they would seek out each other if the nightmares struck. Maybe they would sneak out of their bed to find each other for a night of quiet (or not so quiet) giggles and easy comfort.

Um, nope.  Can't honestly believe I typed that without laughing.

When we got to Japan we stayed in a hotel for almost two months.  They HAD to share a bed, they fought that like crazy and they were only two and four.  It was so bad that we ended up making a comfy pallet on the floor that Madison slept on, Sydney tried it one night then determined that the bed; while not as cool, was much more comfortable.  I knew right then that they were never going to gravitate to each other.   When we moved into town, they each had their own room, but Madison's had a skylight that was right above her bed, so she was up with the rising sun and cranky soon after. Plus, her room was very cold.  Turned out that Sydney's room was smaller, and held the heat.  We set up Sydney's crib, because our pediatrician told me to keep her in there as long as possible.  Smart guy.  Anyway, with the steep, slick wooden stairs in our beautiful Japanese house, yeah... I wanted to have a shot at hearing her moving around before she had a chance to fall down the stairs or something.  She wasn't crawling out then so we were good.  In fact, the movers were kind enough to put her crib together after unpacking it, no sooner had I put a sheet on her mattress, She saw her bed and from changing table and pointed to it...I put her in and she slept for five hours in a nap and still went to bed her usual time.  Yikes!  She missed her bed.  Also in her room was a twin bed.  I made the bed up, but when I found the flannel sheets, I stripped the bed to put those on, Madison watched me, helped me enough to know that these were really soft sheets and really warm.  The next morning I found her sleeping here.  The desire for warmth overcame the prestige of her own room.  Makes me want to put an ice blower outside the door of their current room.

On base they shared for a little while, but then we separated them.  And since then they have been in and out of each other's room constantly.  For now they share.  And for now they continue to fight each other.  Eventually, I think they will take away valuable lessons from this experience, I just don't know if they will be about tolerance or about how to beat your roommate and get what you want.  All good life lessons in the long run I suppose.

But there is a new element to this witches brew.  A couple weeks ago, Bradley woke up and when he bailed his room he found himself in the middle of their room.  He cried out and Madison turned over saw him, held out her arms and said: "Come here."  He did, and when I went in search of him, I love that I found them sound asleep, back to back in her bed.  Total "Ahhh" moment, I had wondered what that would feel like.  Finally some loving and snuggling!

Then about a week ago, again I went in search of the missing Bradley...hey I told you, our camera situation sucks.  Anyway, turns out he had tracked down Sydney.  So he was sprawled at the end of her bed sound asleep while she was curled up in the fetal position at the top of her bed.  So yeah, maybe no snuggle, cuddle points...but I was still pretty excited that he was there with her.  And not for the obvious reasons, me getting to sleep a little more than usual, but because he looks to them to provide him comfort, and he trusts them to take care of him.  That in and of itself is quite a gift to give and to receive.  So yeah, that made me super happy.

As for my girls, they liked having him there.  But they would rather have their phones taken away rather than turn to each other for comfort and support.  They'd probably agree to let you take all their electronics before they would hold on to each other.  But as sad as it makes me and worries me about their adult relationship... I realize that there is a process and a path they have to take in order to get where they are going.  Their adult relationship will or will not be, but that will be for them to determine and for them to work at and fight for if they want it.  I think they will each try to stay close to their brother, I wasn't sure before, but as they grow my confidence in that...yeah, I feel good about those future relationships.  And I think because of Bradley, they will have kinder, more genuine people in their lives, or at least I really hope that that is the way things go.

For now, I enjoy finding two out of three of my kids snuggled up together.  And I feel great joy that Bradley is so comfortable with each of them.  I wish it were me doing something right, but it's not me, it's just a little Bradley magic doing some great work!

Halloween Parade

Another first for our little Kindergartener.  His first Halloween at school.  At first I was kind of excited... I ended up not feeling too much beyond annoyance.

Bradley is in a separate classroom on his elementary school campus.  We have our own Principal and our kids share a Kindergarten playground, just not with their kindergarteners.  Our kids are connected to Ventura County and the elementary school is connected to the school district we actually live in, where the girls are.  We walk through their office in order to drop off and pick up our kids.  There aren't that many of us who do this, most of our kids are bused to and from...but every day we have to get a pass.  They had a secretary last year who was super sweet and one who was nice enough.  The nice enough one is still here, the other one left.  They both used to admit they knew who we were...the new Principal, has no interest in knowing any of us.  He walks around with such a chip on his shoulder he must have constant back pain.  The new secretary, like the new Principal, never makes eye contact with us.  Who knows, maybe if no one makes eye contact we'll all just go away.  I manage a loud and chirpy good morning most days.  Perhaps they are not morning people... Perhaps they are not human people... Well, you get what I mean.

It feels very welcoming doesn't it?!  Yeah to us too.

So today was the big Halloween parade.  Each class carried a sign to let us poor parents find our kids.  Turns out our class didn't get a sign.  Our kids were lapped, but hey we're a little slower, it happens.  Took me a bit to find his class, and I noticed our class was floundering a bit trying to figure out where they belonged in the group.  Where they were supposed to walk, to stand.  When they decided to sit all the kids down they called Kinder, then First and Second.  As we moved over to the seating area a teacher who seemed to have some authority for telling classes where to sit, shrugged and told Bradley's teacher "You can try over there."

And I tried to close my mouth, I did.  But of course I gave my morning office smile and said: "We can try huh?  Nice."

Luckily, Bradley's teacher told me then that they often take some of the kiddos back at this point.  Considering my awesome knee brace and probable inability to get up off the asphalt, the likelihood Bradley wasn't letting me go, and the intense noise and crowd...I knew Bradley really wasn't liking any of this.  Considering the only pictures I have are of him trying to climb up my legs into my arms; yeah, my guy was over this parade fun.  So off we went back to the classroom, half way there I relented and gave him a lift.  The crowd and noise was enough to make me want to hide my head, I couldn't blame him nor would I consider not offering him a little comfort in the midst of chaos.  Surprisingly, back in his class, at his desk, he started playing with a duck game and when I said goodbye and asked for a kiss, he lifted his head and did.  Not bad.  Pretty proud of this little boy!

Skip to the end of the day.  Of course today was the massive bowel movement day, and he took out his costume pretty decisively, poor Jedi.  But I had thrown in a couple changes of clothes.  He came out wearing the school's special jog-a-thon t-shirt.  I scooped him up as he ran to me and hugging him tight I laughed and said, "New shirt Young Jedi?"  His teacher told me about the accidents.  I just laughed, said "Sorry, so all or nothing with him.  But that's all right, his shirt is a second costume... Like a kid that belongs at this school."  His teacher heard me and grinned, another mom heard me and started laughing, and one of the aides looked confused.  Oh well.

So I took my little guy home, we watched Disney together, threw his costume in the wash so that this young Jedi will be ready on Saturday, and then he decided to sleep through his last behavior assessment because it turns out that like his mom, he'd had just about enough of this day as she had.  I guess he's a lot more like me than I ever thought.  And because of that, because he knows more about those around him than they realize, I show up to these things to make sure that he has someone always on his side.   Maybe not the best day for inclusion and whatnot; but in terms of Bradley, pretty good for everything else.  And in the grand scheme of things, Bradley walked in his first school Halloween Parade, go ahead and scratch that one off the sand bucket list.

Scientists Are Talking

I try very hard to keep up with the latest research into Down syndrome.  I pay attention to clinical, trials of new drugs and I try to follow along to see where those trials do and do not lead.  While I do this I find myself at times inundated with the rhetoric of the opposers to Down syndrome.  You can't escape these people, they are always on the outskirts of the realm of this research, of these discussions.  I try to be fair minded in my life so I try to just accept their presence and ignore their hate, but sometimes it still spews over and burns me.  It's always hard for me to hear someone screaming for the eradication of people with an extra chromosome, that's screaming that my son is not worthy to be here, to have life because he has an extra chromosome.

My belief is that we are all here for a reason, that each of us has something that the world needs.  We are all needed, my gift is not your gift and vice versa.  I tell my girls this all the time, just like I tell them that it may take time to fully understand what they are here to give the world.  I still don't know my own mission.  So I try to make sure that right now all they need to know is that they are important to this world and this family.  I tell them that Even I'm not sure what I am here for, that I believe I have something to offer...perhaps I was supposed to bring them into the world because they are meant to do great things....maybe being Bradley's mom is going to help change the world for my son and those like him.  Maybe that extra chromosome is truly a gift, not a curse.  Maybe one of my girls will manage to create a better world for Bradley...maybe one of them will change the world.  Maybe one of them is meant to change his world.

You see, despite the pathetic amount of research funding provided to scientists regarding Down syndrome, scientists are still working.  Scientists are discovering that plaque particles adhere to neurons in the brain differently in the brain of a person with Down syndrome...this leads to ways to discover how this happens and how it can be stopped.  Recent research has shown how tumors don't solidify in those with that extra chromosome, whereas those of us born without it...we have more potential for developing them.  Leukemia?  Yes, Bradley is more susceptible to have it...but his little DNA strain is more likely to accept treatment and remission.  We'd very much like to never test that, but that's something else that's been discovered.

Hate my son, hate his extra chromosome...but before you destroy every baby that might have a third copy of the 21st chromosome, be aware...his little DNA strand might just hold the key to stopping cancer or Leukemia...or dementia or Alzheimer's.  What else does his little body have to hold the key to before the cries for his extinction are forever silenced and  his life is met with acceptance...and his presence something that one could be grateful about?

As for research, consider putting some of your charitable contributions into the Linda Crnic Institute for Down syndrome at University of Colorado...these are a few of the scientists that are trying to find the cures to Alzheimer's and cancer;as well as, open doors for drugs that help improve short term memory and cognition for people who have an extra 21st chromosome.  The more work they do, the more they know and learn in order to understand, define and cure the diseases that steal so much from so many.  It's time to stop being afraid and stand up together, and stand up for each other.  Differences are beautiful because they make us who we are, and who we are is enough and worthwhile.  Even if one of has an extra chromosome.

Have a great night all!

The Toughest Lessons

Well, Monday came and went and the girls put their hearts out on the basketball floor.  They were competing with twenty other girls for four spots.  The Principal told Eric and I that a teacher was going to be the Basketball coach, but he lied. The coach is of course a parent, and she kept the girls from last year and any that she knows that have played with her daughter over the years.  I'm not a big fan of parent coaches at the middle school and especially the high school level, way too personal.  They aren't going to cut their own kid, or his or her buddies.  New kids have very little chance to make a team, no matter how good they are.  Military kids have it even worse, we have friends with amazing young athletes, one kid is playing and the other is not - even after beating the local home grown hero in tryouts.  What I am learning is that sports are incredibly political, and it's not who you know it's who knows and likes you with a little bit of talent thrown in.  And after that, it's all about the money.

Let's face it, if parents don't fork their money into sports, kids are not getting put on the teams in school.  There's a local High School that has early morning workouts for basketball that parents have to pay for, way too much money for by the way.  And here's the thing, if you don't attend the workouts...you don't start and you play less.  Yeah, that's fair.  So if your parents can pay the money they can buy your spot on the team.  As it is, parents are buying spots for their kids through all the  Club sports.  Three thousand dollars for a seven month season, that puts a kid on the school team...now, parents are expected to pay a weekly fee for workouts to determine if a player is going to get to start, let alone get to play at all.

Your strength of heart, your passion, your skill... I am seeing less and less chance for a non-Club player to make that High School team.  And it makes me so incredibly sad for my kids.  But maybe it shouldn't.  You see I am sad that they might not get to experience the fun of sports, the connection that a sports team brings you.  Because even if they make a team, what hidden fees are going to potentially derail them before they could even get started.  I can see them making a team, then not getting to ever play because their parents can't afford a $60 a week fee for workouts.  Nothing like
putting their hearts out there, and leaving it all on the court to then not really play because of money.  But if that's what sports are now about, if it's all about the money...then do I want them any where near that mercenary enterprise?

I keep most of this stuff to myself and when they say they want to try out for a basketball team that they have little chance of making, I encourage them to go fight hard and fair and do all they can to make sure they leave the court each day proud of themselves.  WhenI dropped the girls off this morning, I asked them each, "Did you do your best?  Are you proud of the work you put in?"  And they both said yes, my reply to them was, "Then you have done all you can do, be proud of yourselves and if they can't see you then that is their loss."

Neither girl made the team.  They were both devastated.  Madison made it to the car before she melted into her tears, then sobbed all the way home.  Sydney was quiet in her anger and shock.  Too many of the girls from last year's team kept telling her how good she was, how they wanted her...she was believing it.  Not being chosen was just crushing for her.  Dad came home before going to class, spending time loving on each girl, helping them spend their grief.

Sometimes the toughest lessons in life are the ones that show you that life is not fair.  That sometimes no matter how good a person you are, how hard you work, how much you deserve something...it just doesn't matter because life is not fair.  These are the moments that hit the hardest and they come at any time.  They come when you don't make the Basketball team, they come when your brother is sick and that changes everything, they come with the loss of someone you love for reasons you still don't understand.  They just come and keep coming.  How well you stay on your feet, how well you climb up from your knees... That's the true measure of who you are and who you will become.

When we learned that we lost our friend Bok and finally told the girls, Eric and I knew we had to let them work through that grief, to understand it and let it hurt because he mattered and their matters. We decided that because life is unfair, but this time, with this pain...we could maybe create a little balance and ease a little pain with some good news.  So tonight we told them that their brother's service dog will arrive on November 16th, and then we reminded them that when the dog isn't working, then he or she is just our dog.  There were still tears of course; but somehow, those were just so much better to see.

After wanting and waiting for a dog for so very long, losing basketball stings, but somehow, the pain is not so huge anymore.  Yeah, life isn't fair, but that doesn't mean we don't keep working hard to push back a little and create a little fair and somehow bring a little joy.

Buddy Walking Prep!

Every year we do the Buddy Walk.  We have always done the walk in San Diego for a variety of reasons.  We started there, and we were so pleasantly shocked to learn that not only had so many of the Sailors that worked for Eric happened to be newly stationed in San Diego, they also seemed to like enough of us to want to come out every year and walk with us.  We should have just carried Japanese flags, we were surrounded by the people that made up our life of active and dependent military friends and their friends.  When the walk was in Balboa Park, we moved to the Japanese café outside the Japanese Garden and enjoyed lunch together every year.  A different venue the last couple years just put us at lunch in a restaurant out of the sun which was even better.  So even when we moved to Camarillo, we still made the epic trek to San Diego to have a reunion of sorts with these people that are the reason I refer to family as by blood or by love. 

Along with our core group, we had my best friend and her family come out and even have had my cousins from up here in Camarillo and from San Diego come out and walk with us.  One year, by complete happenstance, a very tall young Corpsman got on the elevator at Balboa Naval Hospital with us, and his name tag was at my eye level and as I read his name I remembered him and his words to us: "This is a very special baby you have here."  He was Bradley's first Corpsman, and he was and is very dear to us; yep, he walked with us too. 

One year we had one of my students from Japan.  He planned his Southern California vacation so that he and his wife could walk with us for the Buddy Walk.  He was supposed to be my student for only a year, but then three and a half years later he was still my student and I was opening a present of shoes from his family to my newborn son as he sat proudly holding Bradley. 

We also loved having Madison's Kindergarten teacher come along with us, much to Madison's joyful surprise.  And we've had people who we never knew who came along with their friends and made our day all the brighter. 

The nice part about the San Diego Walk was that it happened in October, during Down syndrome Awareness month.  So fitting, and so fulfilling.  I always felt like we had taken large strides to spread awareness and acceptance for Bradley by these reunions with our Team.  Our Team.  Our Team is more than a walk though; our team is a group that checks in and prays when Bradley needs them, our team sends their support and their love when Bradley is struggling and when he is going through all the medical nightmares he goes through, our team is the one that picks up Eric and I and holds us tight, helping us through every moment.  Our team...they may be spread out all over the world, but their love is still right here, wrapped tightly around this little boy and his family.  We miss you all terribly!

So this year, we didn't make it to the San Diego Buddy Walk.  Eric is having some trouble with his heart that required a lot of tests and meds and prayers and he just couldn't make that kind of trip.  But he is getting better and we did take note of the Orange County Buddy Walk.  We decided to do it a couple weeks ago; back when we could probably have found team members to walk with us, I just for the life of me couldn't get the website to let me register our team and get the ball rolling.  We finally got it today so our little family of five is now registered to go down and walk the walk with whoever shows up at this particular walk.  This is our first time in this venue so we have little to no idea what to expect, but I did see something about maybe base running??? Just don't quote me on this. 

In case you were looking for something fun to do this Sunday, you are welcome to join us in walking through our post Halloween Trick or Treat night hang over morning.  We're missing the fact that our team has transferred away and the health of someone other than Bradley has prevented our ability to walk with the couple members we still have in San Diego, but we also felt that NOT walking somewhere would be letting down those that have never ever let us down.  So for all the years you've made it out for us, this year we are making it out to a new venue and I am going to admit to being a little nervous, but also excited about this whole new place. 

This link will take you to the Bradley's Buddy Brigade Team page if you would like to register to walk with us or to donate. Thanks and those who jump in on this short notice are superiorially (my word, though not a real word) more awesome than usual! :-)))

http://dsaoc.donordrive.com/index.cfm?fuseaction=portal.team

Thanks everyone and have a wonderful night!!!  Monday is officially in the books and I am looking at being in bed and asleep before 10:00!  Wow!  It is a crazy night indeed! 

The Best Gifts

It's Day 25....

You should know that there is a network of special people who chose to love Bradley.  Sometimes as a parent you forget that it is possible to not love your child.  You forget that some people don't love their babies, that some choose or just can't love their babies like Bradley.  When loving is like breathing, when holding your son and feeling that your heart beats because he's in your arms...that love, that's true love, real...and you know you are Blessed.  You are Blessed because you get that love and because you can return that love.  You choose to love.  I chose to love my children.  I loved them while I carried them, but I didn't fall in love with them until I held them.  I thought that fear would steal love from me, that I wouldn't have that with Bradley.  But I was wrong.  I couldn't hold him without feeling my heart match his rythym, reminding me that life, love; is precious, and staring into his incredible blue eyes I knew I loved him and that his journey would be my journey and I would follow him anywhere.  His Dad will be right there with us, and as the girls grow, with every day, I see them not only staying on this journey but also planning to make sure their journey keeps Bradley with them too.  As much as the girls fight each other, they don't fight him.  He brings them his special peace, and he loves them and lets them love him back.  Maybe that's it, maybe that's all we need.  Knowing that they love him is incredible, knowing that they will accomplish amazing things in their lives suggests that I have utter Faith in them... Perhaps it is time to just have Faith in the love they feel for their brother too, that all will work out the way it was planned from the start.  I can live with God's Plan.

Besides us, the people that choose Bradley do so in small precious ways.  His medical team is incredible, they don't have to care about him, but they do.  His pediatrician treats him like a grandchild, his GI is awed by him and always knows what's going on in Bradley's file.  They're the ones that give us their dedicated attention.  For that fifteen minutes Bradley is all that matters, but even after, they make time to make sure they are on top of his care.  To them, Bradley matters.  It's a gift, and I can always see how much they care about him, it helps.

It's Down syndrome Awareness Month.  I try to post daily to let the world see into how a typical family raises amazing children, one with a little extra something.  It is always the greatest honor to have someone other than our little family of five show their love for Bradley and spread some Awareness too.  On March 21st, our Bradley's Buddy Brigade page will have lots of crazy socks to spread awareness!  Twenty one is key of course, and the symbol of a pair of socks looks a lot like that special chromosome.  It always makes me a little misty when I see all the pictures, that much love makes you overflow.

This month, Bradley's midwife changed her profile picture and her Cover photo for her Facebook page to one of her and Bradley in order to help spread awareness.  If you don't know, Bradley's birth story was a surprise story; he was a surprise, but the love that we received from Ms. Kim and her crew, that was the Blessing that helped us see past the shock to our special little boy.  Forever grateful cannot begin to describe how we feel about her and that entire crew.  So many Blessings wrapped up in a very difficult time, but looking back...love and gratitude for patience and understanding...that's what we carry with us.  We love you Ms. Kim, always will!

And then yesterday...sigh.  A few weeks ago I made the mistake of commenting "I need" on a t-shirt that popped up on my Facebook page.  Eric has this incredibly sweet cousin, his father was the namesake for Bradley's beautiful middle name: Ellis.  Mike not only Blessed our choice but even seemed pleased by it.  He saw my post, and felt that I needed that shirt too, so he proceeded to make sure that Eric and I both got one.  We love you Mike, you are sweet and kind; and so much more than we deserve.   You love us, you love the girls and you love Bradley, such an amazing gift to give and we love you back!  Thank you!

    

The best gifts are simply wrapped, they aren't flashy, because love just shines true, clear, and perfect.  We have been Blessed by so many people who take the time to show support and love for Bradley and for all of us.  We didn't make the San Diego Buddy Walk this year, health was the main factor.  But we are going to make the Buddy Walk in Orange County next Sunday on Nov 1st.  It's a new walk so we aren't sure what to expect really, but we're going to be there anyway.  :-)  We will miss our team, you are all spread so far away...but you will be with us as we walk, and that will be enough...even if my eyes overflow just a little bit as I miss you.

Happy Sunday everyone.  It's nice knowing you are loved, that's the greatest gift of Acceptance...and everyone wants some of that! 

Just Another Saturday

Saturdays are a mixed bag at our house.  Bradley believes that sleeping in is a crime against nature.  A day when everyone is home is a day that should start as early possible and keep at it for all the hours of the day.  In fact, if mom would stop driving into LA he wouldn't even nap but the car invariably puts him to sleep.  He wants to stay awake, but he can't.  Sigh, poor guy.

So after his nap, we hit Party City, because I am insane.  Twenty million people all trying to get a Halloween custome.  Okay, maybe about fifty, but the girls were completely spacey about their choices for what they wanted to be this year.  Madison finally chose Minnie Mouse (yeah, I don't know...) and Sydney wanted to be a 50's Sock hop girl, but the costume was too big.  We know this because it took her about thirty minutes to try it on and determine that it was way too big.  So she decided to be a goddess.  An hour later, we left the place.  I was never more grateful to leave a store in my life!

Bradley is going to be a Jedi.  His costume I ordered after we got home.  God Bless Amazon.  I tried to get him a Superman costume but they didn't have his size.  I know, a week before Halloween here, things get sold out.  I was okay with that, I expected that to happen.  I didn't anticipate there being so few costumes that didn't have a hat or a mask...Bradley won't do hats or masks... I don't think he will...I mean he might, but I wasn't interested in forking out the dough to find out he wouldn't wear a hat or mask.  So Jedi it is.

We came home and I unsuccessfully tried again to register us for the Orange County Buddy Walk.  This has been ongoing for a while now.  I thought the San Diego website was tough, hah!  I wish we were using that one right now!  I'll try again tomorrow, but probably just call Monday.  We're late on this one this year too.  We didn't do the San Diego Buddy Walk this year because Eric's health has been pretty iffy, and his exhaustion and trouble breathing didn't make the trip feasible.  Orange County is doing theirs on Nov 1sr, we're shooting for that one.  Eric is feeling better, so we think we can do this one.  So, Anaheim or Bust next Sunday.

Frustrated by the website, I gave that up and made BBQ chicken and mashed potatoes for dinner.  I gave Bradley his first taste of the potatoes with BBQ sauce gravy and he actually signed more.  It was awesome!  But he actually got more excited by the salad, I think that made me even happier.  The girls and dad, really pleased by their dinner too, so great!  So a successful meal.

How do you end this kind of a Saturday?  Easy, put a very tired little boy to bed and then watch an epic B-Rated - and actually kind of funny movie with the girls.  Orcs and dragons, oh my!  If only we could get Sydney shut her mouth during the movie, we'll enjoy them too!  Sigh...

Happy Saturday!

On the Merry-Go-Round!

As we are sitting in the middle of a rain delay with my Royals all tied up with the Blue Jays in Game Five of the Championship Series, my mind has a tendency to stray towards sports.  I played Volleyball in High School, I wasn’t great but if I hadn’t hurt my knee in the summer before my senior year, I might have played more and even started a few times.  But that was not to be for me, I limped along playing as hard as I could and played when I could, but through it all, I was part of a team of mostly really nice girls.  One girl as a Senior was so kind to us Sophomores, when I went to name my daughter, I thought of anyone that gave me negative thoughts with that name and any that gave me positive…she was a positive so I felt good about giving my kiddo the same name.  Silly yes, but still true nonetheless. 

Anyway, last year Madison played for the school Volleyball team.  Oh my gosh, the stress waiting to hear if she made it or not.  I thought I was going to buckle under the strain and she was a hundred times worse!  But she had a great coach, one of those coaches that looks for coachability, enthusiasm, willingness to work hard and willingness to be part of a team.  Madison is all those things.  She is the player that takes a suggestion or a correction and employs it.  She’s not the repeat offender because she listens.  At sports, with coaches, she listens…at home, yeah…not so much! 

This year, no volleyball.  It’s frustrating up here.  The public schools have no Volleyball, the Private schools all have Volleyball.  You have to pay for it up here.  In San Diego, we worried because she didn’t play Club Ball and all the other girls did, but she still made the team.  Her team went on to win the 7^th grade Championship and she cried she was so excited.  I was a little weepy too, seeing her that excited, that feels amazing!  Up here there is only Club until Freshman year, or Private school, which is way out of our reach.  We try to let the girls play in some clinics at the Club, but as for playing Club…$5000 for a season for the girls to play on a team for Club is just impossible.  But of course, those are the coaches that are telling the girls, “If these were tryouts for the team I’d be looking at you because you’re doing what I ask.” And my favorite, “I’d put you on my team right now, are you trying out?”  Grrr…You want to smack them and thank them at the same time.

So we have them in these Developing Clinics, helps them develop as players in between School and Club Seasons.  One of the coaches (also one of the owners)  is the coach for the Freshman team, he told us all of his team are Club players, that’s who he takes.  I think it might have been a sales pitch, whereas I asked about another High School…he said they have a lot of non-Club players.  I smiled and told Madison that we might look there, looked at the coach and said, Sorry I got two players…I can’t afford one to play let alone two.  Then his wife hits me up with how the kids get through the season but the ones that don’t play Club get left behind for the next year.  I wanted to say thanks Good Humor Lady…want to turn in your white coat now? 

So I’m definitely frustrated with Volleyball!  And now the girls are trying out for Basketball.  And here’s this whole other basketful of dilemmas. 

My girls are two years and four months apart.  I knew that they would be in High School together, and I knew that there was always this slight possibility that Sydney could make a Varsity team as a sophomore and play on the same team as her sister.  In fact, I considered that as a beautiful potential, not likely but man that would be cool!  Yeah, sure…only…there’s this whole other thing that I also knew about and didn’t want to consider.  It leads down an ugly path, one I’d hoped to avoid…only now we’re walking down that path.

Up here, Middle School is 6^th, 7^th, and 8^th grade.  So Sydney and Madison are both at the same school.  That’s very cool.  They both want to play basketball for their school.  That’s very cool!  The school has only one team – 6^th, 7^th, and 8^th grade.  Huh…wha…..  Oh that’s so potentially bad!  Grrr!  Now not only do I have this stomach pain as I fret with them over whether they make the team…now I get this whole new dimension of worry.  What happens if one kid makes the team and the other doesn’t?  One would be jubilant and the other devastated.  How do we get ourselves into this mess?  Seriously?!

Oh, and it’s not like it’s a quick process either.  No it has to be an ordeal.  Sydney was supposed to have one day of try outs, Tuesday.  But then they had them all come back on Wednesday, sure we can arrange our lives around your disorganization.  So Sydney goes back on Wednesday and is now trying out on day two with Madison and the rest of the 7^th and 8^th graders.  On Wednesday, they tell the kids that they will receive notes today if they are invited to another tryout next week.  Three females in this house on pins and needles all day!  The talk before school, “We are aware that one could get called and the other not.  And that’s okay.”  They assured me they were good. 

Good news is that they both got the note.  They both are going to the second (for Madison) and third (for Sydney) tryout!  The girls will fight for spots on the school team; in theory, they aren’t supposed to be fighting each other, but who knows.  It wasn’t supposed to be coached by a parent, but it is.  We’ll see how it goes.  I tell them to go out and do the best they can so they have no regrets, leave it all on the court and be proud of the effort you put in.  I sure hope it pays off for both of them!   

Sigh!!!  After the nail biter game we just survived to send my Royals to the World Series, we’re going to have an easy weekend and start the sports merry-go-around again on Monday! 

My Eleven Year old Guest Blogger

 Bradley

            To my dear brother Bradley, who always knows just when to give you a hug and a brilliant Bradley style smile. You shine so bright, little man, don’t ever let anybody try to bring you down. To the boy who makes the brightest star look dim, I love you more than you will ever know…

          There’s a particular amount of love in life. I believe that love is all of life, and it, as well as we, would not be so without it. A time and place for everything, it’s true, and these are moments life chooses ever so often, yet rarely with love. It can happen to anyone, even me, I just can never seem to see it. Once upon a time though, I did see it, and it changed my life forever.

            Its risks lie under a blanket of faith, with benefits and love above it. But every so often, faith peels away when the body of risk and doubt get too hot. The only thing supporting it is a pillow of hope and a mattress of choice, in which you must believe, in God and yourself.

            Yet I hesitate greatly, if not, entirely, to say that this change, that that moment in my life was bad.

            This moment was undoubtedly Life’s gift to me, with just some tears in the wrapping. Life delivered it to me on the 9^th of January, in the year 2010. I shall never forget that day.

            Wrapped in a unique style wrapping, and a different style of ribbon and bow, it came to me as a boy, one diagnosed with Down syndrome. Of course at the time, I had not any knowledge of what that could possibly mean to, or for me; nor that the best present I could ever have asked for was laid in my hands as he opened his sparkling, blue eyes, and stared up at me with bright curiosity.  

            It wasn’t until the first time he opened his mouth and his tiny lips spread upwards like a banana, stretching from ear to ear, as smiled at me, a smile for me, that I knew I knew how much he meant to me. And it wasn’t until now, five years later, that I have finally figured out just how much I mean to him.

            I’m sure you have all viewed him through photos on my mother’s blog, or have read of him on that blog. But just in case you have not, “he” is that number 1 miracle that I have ever witnessed and have called mine. His name is Bradley Burnett.

            And I’m telling you, he is the sweetest five year old boy you will ever meet. Guaranteed. His smile is the first thing you see, and it is irresistible. It’s painful to see him cry, or suffer in silent pain. With eight surgeries, 17 procedures, and countless seizures, there’s a lot to be said about him. And as much as he is different, he is oh so much of the same, and continues to smile every day. There hasn’t been a time where we’ve driven to UCLA or down to Balboa where I don’t feel pain for him and anger against God, thinking, “Why us? Why him? Why does it have to be so unfair?” but I answer these questions. I believe that it is a situation for us and one for us only because we can. And maybe anyone else God may rest the situation on might just crumple to dirt because they simply cannot burden the weight of such a thing. But Bradley does not feel it. He does not know much now, but is learning fast. He does not know of his little flaw yet, but if there’s one thing I know like the back of my hand, it’s him. And you know what he would want? He wouldn’t want us to worry about or for him, or weep for him, or live in sorrow about him. He would want to play and smile and have a good time while it lasted.

            Yet the funny thing is, he isn’t different because he has Down syndrome. Not in the least. It’s a story I will share with you now, to help you understand. It still saddens me and scares me, as some still happens today. But I will start at the beginning, nonetheless.

            As my little ray of sunshine turned 18 months old, everything changed. We had a choice. One that held so much devastation, even I, at age seven, was shocked to a point where breathing seemed pointless, as I couldn’t do so.

I’ll never forget, the blood of my heart, gushing from my eyes, from the wound that is now a scar, as if a sword slashed into my heart’s core, where all veins connect to help me live. This all happened by words that might as well have been the sounds of the world ending. And to some extent, my world truly was ending.

~ Several hours ago, several days ago, the true value of life meant a whole lot more and had more meaning to me that I might have ever imagined. My parents could not explain it in such a way that would shield me from the blow of the sword as it attacked my heart.

Apparently, Bradley had not been keeping his food down for 18 months, everything he ate and drank was spit back up within an hour. His esophagus was too loose.

Here was our choice, as a result: we could insert a button in his stomach permanently, which attached to a G-tube, so we could get his food to stay down that way, or we didn’t insert the button, and eventually he would starve and… go to heaven.

After the surgery to get the button, I knew that it was never a choice to begin with. I know now I would do anything for Bradley, even if it included laying down my own life if I died knowing that he was still alive, that I saved him another breath.

My heart has healed, blood has filled it again, but that scar is still there, hidden in the depths of my heart, where no one can see it, and it will never go away. I chose to let Bradley into my life, and he chose the same for me. We are bonded together with an unbreakable thread, and for that I am grateful. He is my greatest gift, and I will never EVER regret him or my choice.

I love you so much Bradley, an amount that can’t be charted. Always remember that, always know that you have a place in this world, and in my heart, that no one else can replace. There is never a time where you are not loved, and my dear, all you have to do is smile and open your heart, and you will never be lonely or scared again. Remember that I don’t care about the eight surgeries or 17 procedures in your medical charts, or how many seizures you’ve ever had or might have. All I care about is you as a person, and that will never change. I write about you today so everyone will know what a blessing you and people like you are. Don’t ever be afraid to help someone understand that, and continue to shine like the shooting star you are.

                                    Love always, with no regret,

Sydney

Technology 2: Me 0.

Oh boy do I not love technology...and boy how much are we dependent on it.

Bradley has seizures and retching/choking episodes.  It's hard enough that these things happen during the day, but there's a whole special horror about them when it happens in the middle of the night.  These things happen at any time and with no warning.  The seizures tend to happen around sleep, it was just around naps, but then he had one in the middle of the night over summer.  Bradley's retching/choking is an unmistakable sound, I here it and start running.  When he has a seizure he makes a very distinct cry.  I hear that and I start running.  Our house is like a track meet in the middle of the night sometimes.  It would be funny if it didn't scare the Hell out of me.

We try to be prepared for any and all of these.  We have had a video baby monitor in his room from the moment he went into his crib.  And that worked great for a really long time.  I could hear him and see him, and the picture was so clear I could see the feeding tube and knew if Bradley was wrapped up or not.  But being the helpful little soul that he is he felt that my video monitor needed to be washed so he tossed it into my kitchen sink full of soapy water.  And while my monitor was really clean, and a bag of rice did bring back a half picture, it really wasn't the half I needed to see.

So we bought a new baby monitor.  And for whatever reason, they just don't seem to be getting better.  This second one is iffy at best.  We noticed a bit more white noise at our old house, same when we were in San Diego, and then when we moved back to Camarillo, good grief...the wheels fell of the bus.  I can still kind of see him, and I can hear him.  The important thing has always been, hear him, check instantly to see what he's doing and go from there.  Suddenly, with a living room between us, the monitor can't handle the separation.  A monitor with separation anxiety...how ridiculous is that?

Month one we had no problem, it sat on my nightstand like always.  Then we hit month Two.  Suddenly, our monitor is "Out of Range" hmmm, really, cause it wasn't out of range a month ago and NOW it's out of range.  The dumb thing sits by the door, as close to the frame as possible so we can get a signal.  The White noise is louder and at times that alone keeps me awake.  Or, the monitor will go from in range to out and that wakes me up because it gets loud and then really quiet.  Talk about creepy!  I was really aware of this, so I stopped sleeping well.

Worried about Bradley and maybe me too, Eric bought a camera for the house that works off wi-fi. Super cool, great picture and sound, and we see him on a bigger IPad screen!  At first it was great, especially since the baby monitor was in complete meltdown.  But we keep having to refresh, the screen times out and everything freezes until I tell it to refresh.  No big deal during the day, only a big deal at night or any time he sleeps and I might want to consider sleeping too.  So I was checking Bradley constantly.  Eric got a new router, new something or other...might have hooked us to the nearest cell tower, or a satellite; heck, I don't really know what... But he did everything we know to try and it still doesn't stay connected.

So, we keep the in and out of range baby monitor on to help me hear him, and then I keep the wi-fi camera on so that if I hear him, I refresh the camera while I find my glasses.  Once I have those I can assess him and see if he needs me or not.  Or that was how it worked a couple nights, and sometimes it still works.

Mostly, now I get Bradley getting up without a sound and scooting down the hallway.  If he's in footed pajamas the scuffing sound rouses me in a mild panic as I jump up to meet him.  Nights he has no footed pajamas he might do what he did this morning at 3:30 am.  He bounces into our room like a ninja...sneaks up to my side of the bed, plants both hands on the bed jumps up on his toes then with his eyes as wide as his smile he goes "Hi!"  Scared the devil right out of me, and that's a feat! So I scoop up ninja boy and trudge back down the hallway to put him back to bed.  He snuggles down and drifts back to sleep, so I stumble back to my bed for a little more sleep.  At some point though, he made his way to the girls' room and I found him snuggled in bed with Madison when I went to wake them up today.  It was pretty stinkin' cute.

Ninja boy has been known to take his blanket and bed down in his chair, or lay down on the tile or rug in the living room.  The only way I often know he's out of bed is that he wakes up the cats who start roaming the house suddenly remembering that they are supposed to be nocturnal hunters.  It's often like playing "Where's Waldo" in the dark.  The best nights are when someone else is up and moving about and I am not awake but stumbling around looking for Bradley only not finding him anywhere...only to find him in his bed happily sleeping while I am then wide awake.  I usually intercept a sleep walker or listen to the end of a sleep talking conversation before I head on back to my own pillow.

Yeah, technology is great, unless you really need it and all it does is laugh at you.  Grrrrr!   :-)

Milestones and Memories

 

Bradley will turn six in January.  I've been stuck in this rythym of saying he's five and a half, until yesterday.  Yesterday it dawned on me that he is almost six.  So much closer to six than five and a half.  It's not that I don't want him to be almost six, but I think a psychologist could have a field day looking inside my head and just noting how I just don't want to age him too fast.  I want his developmental age to match his age...but that won't happen...so I'd like to have a closer gap.  But the truth is the gap begins to widen, and though I wouldn't change Bradley because who is is more than enough, I still wish I could keep that gap from widening any further.  But life is going to be what it will be, and I think the best solution is to celebrate his triumphs.

We've had a lot to celebrate with Bradley lately.  Not only does his health continue to make him a little stronger each day, the result is that he continues to get to go to school.  Not at home because he is so weak and fragile...but big school!  Our boy is tackling and conquering his Kindergarten.  I kept trying to make sure people understood it was a special class K-2, like I wanted to make sure I was clear and didn't let anyone think I was making Bradley smarter than he is or more capable than he is...more included than he is...more than he is.  I would never want to take away from a kid that is making it in a regular Kindergarten, but I've stopped thinking that my little boy needs to be explained.    Perhaps we're not ready for full inclusion, but we're ready for school and Bradley is growing every day and proving that there are no limits to the world he lives in, only possibilities.

A year ago, I wasn't sure what to say when asked if he recognized shapes and colors.  I could see some of this at home, but Bradley is a shy guy, I never know what he'll show someone else.  First month, I carried so much anxiety that he would not ever show them what he knows.  But then the last month  happened.  First he showed a preference for someone, getting excited by one of the aides coming up to say hi and Bradley running up the ramp to give a hug.   Then Bradley decided that he likes his teacher, because he grabbed his chair and moved it so he could sit beside her, big move on his part.  Then Bradley walked in with me, not carried, and helped me put his lunchbox away and then went to his chair, less cling to me, though my leaving caused him to cry and hide his head.  Starting last week, he holds my hand in, puts his lunchbox away, closed the fridge, held my hand to his chair, and sat.  We looked at his shape cards, he found the matching card to place on the Velcro, he matched every one without help.  I was overwhelmed with his ability.  He is showing consistency too, every time that's his task, he does it then waits.  They want to help him learn to use scissors, so he uses chopstick trainers and he uses them to move little rubber dinosaurs from the table to a cup or cup to cup.  He did this for me, showing me what he can do.  I was so excited, I kissed him and told him "I love you!"  He decided to do it all again, so without looking at me he said, "Love you."

Yesterday it hit me that my little boy is a big boy too, he's a kindergartener too.  He may not be just like every other kindergartener out there, but he's up for the challenge of being at school, learning a lot of new stuff, and in his case - learning a lot of stuff that just can't be taught when you're too sick for school.  He's catching up really great and he's stepping forward at the same time.  What was so special about yesterday?  Just like every other student at that school, Bradley's school picture came home.   And while some parents were disappointed, we were part of the side that were really pleased. And yet so unlike them too.  We were the parents that let out a breath we never knew we were holding as we felt the joy that our son is well enough to go to school and not only be there, but begin to thrive there.

 Of all the milestones in the last weeks, that picture represents a single triumph, Bradley's strength and Will to get better.  He is a force to be reckoned with, and I am so proud of who he is and who he is becoming!

And then when we went to school today, he decided to show me just a little more, because today he decided to show dad how he does the shapes.  Today, Bradley let Dad put him down in the classroom, let me help put his lunchbox away, but then took dad's hand to go to his chair, showed dad his shape work and when he was done he kissed dad goodbye, stayed where he was and waited patiently for his teacher to give him his next task. Wow!  Today was the day to let us all know how amazing he can be at school!  No pressure tomorrow Bradley, but now we all kind of know and have seen how great you can be...just saying!

Keep growing and putting one foot in front of the other, we're ready to follow where you lead!

The Date is Set!!

Somewhere in this mass of puppy cuteness sleeps Bradley's new best friend!  The pups are about six weeks right now, and only about three weeks old in this picture.  When choosing the best pup for Bradley, there are a few special little areas to look for... 

A puppy who doesn't mind having a little boy rub his ears or the tip of his tail.  A puppy that is not too mouthy, there are times Bradley has lots of tubing around him, so it would be best if his new pup wasn't overly interested in chewing tubes and plastic.  Bonus if he leaves my shoes alone!  Even though Bradley is super boy when it comes to his physical side, he suffers some balance issues.  He can pretty safely navigate his school playground, but transitions still have a tendency to throw him.  And though we practice stairs everyday, he gets a little uncertain on them and could use some help.  For now, Bradley tends to get up the stairs pretty well, if not slowly... Going down?  Well, be ready to catch because the last few times he's launched himself from the top step.  Yikes!  So Bradley's pup will work on helping to give Bradley confidence, and a whole lot of support on these obstacles.  Bradley's new pup has to be patient too.  A patient friend that will wait for Bradley to catch up, wait for him to accomplish his tasks, wait for him to move, to finish Nebulizer treatments, doctor appointments, finish procedures and I hate to think of these, but surgeries too.  He must be patient with Bradley.  He must know Bradley.  Together these two will make an unbelievable team where one pup will bond with my boy and know who Bradley is and how he acts, moves and behaves so that if Bradley starts acting any different he will let me know.  In the fight against seizures, this pup will learn to let me know.  He will be my extra nose and eyes on Bradley so that a I can get to him and help him get through each seizure.  

so much expectation on one small pup's shoulders.  But Bradley is going to love this pup, and Madison and Sydney are going to love this pup, and this pup will love them all back and be the kind on positive support that will carry each of them through what they need the most.  Of this, I have complete faith.  

After a long, long wait...we have learned that Bradley's new pup will be joining our family on November 16th, 2015!  Yes, in less than a month, our family will not only add a new fur baby to our family but a new adventure for Bradley and all of us.  

 

Look out everyone, Bradley is about to open up his world just a little bit wider and see what's available.  Can't hardly wait!!  

P.S.  Little puppy forgive me if you turn out to be a she instead of a he, most girls are kept for breeding, so it will be a huge surprise to get a female over a male, but we'll take whoever we get!  

A Different Outlook

I remember when Eric and I decided to try and have kids.  I started taking the right vitamins and started eating Raisin Bran because all the experts said it would give me smart children and healthier children.  I was totally on board for that.  Only problem is was, we couldn't get pregnant.  Which meant I was eating Raisin Bran for almost two years, and for someone who isn't a huge raisin fan, that meant all the work without any payoff.  In fact, we had to become a medical odyssey in order to get pregnant with Madison.  I tried to do everything right, I was super careful about what I ate and I  did a whole bunch of research about what was coming so I would have some reference between potentials and what we actually had.  And through all that I knew that my partner in crime was so much better prepared than I was and if I didn't know what to do, he would.  But the pressure!  Good night! And then I didn't want to breast feed, but the experts said it would protect my children from Chrohn's disease, and knowing some of what my brother has gone through, I agreed to nurse.  When her pediatrician told me that nursing a year would be best for her reflux issue, I agreed.   After all, how could I be sure that I had not done something wrong to create her reflux problem.  Was it my fault that she would burn so bad she wouldn't breathe?  What had I done wrong?

I followed the same scenario with Sydney, luckily only six months of Raisin Bran on top of the pregnancy, so that was a relief.  But I had trouble carrying Sydney.  A lot of hospital time getting hydrated because living in the desert I just couldn't do it on my own.  After each IV trip, I tried harder, but I was always back.  I always thought I was doing something wrong, and no one really tells you that you are doing it right.  When I was contracting for eight days... Four minutes to eight to twelve back to four.... Over and over, I paced and wondered, and worried.  What could I have done different?  We didn't live close to town or the doctor, so once a week (or longer in the sixth month when my appointment was three weeks apart) I'd have a strawberry banana milkshake from Jack in the Box after my doctor appointment.  Maybe that was a bad idea?

And then along came Bradley.  A lot of guilt.  I wasn't trying, our birth control failed...I was trying a new diet pill... and along came "Surprise!"  And no, they still don't tell you it's okay, what I got was, "Oh well, it's done."  Which translated in my head as, if anything is wrong it would be my fault.  When I had Melanoma and had to have surgeries I worried about what would happen to the baby I carried and what I was doing to him.  When we got through that but I started losing amniotic fluid, I began to wonder if I could have prevented that too.

Ninety minutes after he was born and our Midwife told us about the extra chromosome, and I knew somehow it was my fault.  Something I had done had caused this I was sure of it.  I hadn't been happy to be pregnant again as the ramifications hit me: this baby wouldn't be nursed for a year like the first two because I would need work as soon as possible when we returned to the states.  Where the girls had me mostly home, this baby would have daycare and babysitters.   I felt like I was letting this kid down before I ever got started.  Plus, we weren't exactly rolling in money, the biggest reason not to have three.  Surely, three was enough, surely something amiss wouldn't happen to further drive us into a deeper hole.  Surely.

God's answer was: "Don't call me Shirley."  And here came Bradley with Down syndrome.  Had I let Eric down by not giving him a perfect son?  I don't know, to him Bradley is perfect... Had I failed to give him a typical son, sure.  But even as I felt that I was not worthy of the trio that created this last little miracle; God and Eric took care of most things.  Eric loved our son and me, he grieved the son we lost but welcomed with love the son we were given.  God gave me Eric, an incredible hospital staff, and so many friends to carry us through.  God gave me Bradley who watched me quietly, his deep blue eyes drinking me in, waiting for my heart to catch up, showing me the way.

And then, one of them, God or Bradley gave me wisdom.

I don't know much, but this is what I have learned, and this is what I have discovered in my beliefs.  We do the best we can, we provide our babies everything good we can and they get everything good we have to give them.  I know now that very little of anything that was "wrong" with my kids, health wise...may be a part of my genetic map, but not really my fault.  As in, I could not control how my kids were formed.  At the end of the day, I know now that the chromosome happened at a cellular level, that Madison's reflux, and Sydney's and Bradley's was probably not my doing.  Sydney's tummy problems, Bradley's...maybe not really my fault.  I tell myself this stuff.  And I consider this...how much worse could these things have been if I had not tried so very hard to make sure they got the best I had to give.  And I think that that might be the key.

Bad things happen to good people.  Rabbi Kushner taught us that, and he was right.  Sometimes no matter how you try you can't stop the bad from happening.  Sometimes no matter how hard you try you can't bring perfect babies into the world, because there are no perfect babies, children or adults.  We are all imperfect.  We are all different, and that which makes me me, is not the same as what makes you you.  As parents we have to let go of the guilt and the regret.  If we did the best we could and chose not to drink alcohol, smoke and do drugs...if we ate our Raisin Bran and more veggies than we ever wanted too... then it's time to let the guilt go.  Because we tried, we gave our babies a fighting chance, and I believe that the fighting chance is better than no chance.  Who our babies are and who they will be might be shaped by a diagnosis, but they won't be defined by a diagnosis.

I believe that all three of my kids will have amazing lives.  I believe that each will go on in this world to find the very things that light up their souls and make the world spin just for them.  I know I will support that, I know I will be their greatest cheerleader next to their dad.  And I know that their Dad and I gave them the best of our genes that we had to give them.  Will the Raisin Bran make a difference in the grand scheme of things?  Maybe not, a harsh truth I admit to myself, but I think that all of that cereal must surely make me healthier in the long run, and that helps me keep up with my kiddos, so I guess it was worth it in the end.

That Super Funny Horse

Bradley has a new favorite movie, "Tangled" and it's not that he loves Rapunzel or thinks Flynn is all that awesome, truth be told, Maximus is his favorite.  In fact, to ask for the movie, he says "Horse" - definitely some affinity for the big animal over the humans.

So I've now seen the movie more times than is probably sane to admit, though I think Madison with "Finding Nemo" and Sydney with "Cars" still have this one beat.  Can I still successfully quote those two movies as well as I can "Tangled"?  Maybe, likely, probably...yes, yes I can.  Not perfect, I mean not like "Green Eggs and Ham" but hey, books are more my lifeblood but hey... You get the idea.

Anyway, most of the movie I spend as my chance to catch up on things around the house.  I fold laundry and do cleaning and in October I tend to blog.  ;-). But here's the thing, I always sing along to the songs while I do my stuff since I never Bradley alone in a room, and I always stop for one very special scene that means more to me because of our original screening than because of the movie.  Mind you, it's all related, but still.

Madison was eight, Sydney a new six, and Bradley was still a baby only eight or nine months old.  We were only a few months removed from Japan, Eric was retiring from the Navy and we were at a loss as Eric was trying to find a job, and we were trying to get a whole new life started all while trying to understand why our new baby was having such a hard time.  There was more screaming now because he was experiencing so much pain, and we were so ill prepared for how the road was starting to turn.  He was so sick we couldn't really focus on that extra chromosome because we were starting to experience real fear that it would never matter.  In the back of our minds we had the Grim Reaper keeping a quiet but distant presence, hounding us as each formula failed, as each weight check never went up, as each injection to stop the croup happened.

Though we were saving all the money we had, when "Tangled" came out, we splurged and took the kids.  The girls started out on either side of Eric, I was holding Bradley ready to leave if he started crying.  But he didn't, he was interested for a little while: the colors, the music, possibly the horse even then.  After a little time, he snuggled in and went to sleep and would sleep through the rest of the movie.  He slept and I just cuddled his warm little body, enjoying holding this small last miracle that God let me help make, grateful for the reprieve from his pain and all the anxiety.

Accustomed to a baby brother that didn't cry, the girls were really having to adjust to a new normal pretty fast, maybe that explains why they each snuggled closer and closer to Dad through the movie, maybe they were cold and wanted his warmth.  Or maybe, they understood the profound pain that was exhibited by the animated parents at the loss of their daughter for a horrifying eighteen years, maybe the cartoon daddy's tears reminded them of their daddy and his promise; our promise, that if something happened to separate us we would never, ever stop looking till we brought them home.  I'm not sure what or why, but when Flynn takes Rapunzel to the boat to set her lantern free out in the middle of the water, I found I had a lump in my throat.  I noticed that Sydney was climbing into Dad's lap from one side and Madison from the other, and they were smiling as they snuggled into their safest place.  With a free seat now, Eric and I adjusted so we were shoulder to shoulder and in a way holding all three of our kids at one time.  In that moment, my heart took a picture, and because it did every time I hear that scene come on, I stop and I watch and I let my heart walk back through those memories.  I unfold them gently so as not to damage them, and I set them before me to see them again and again.

Would I ever tell Disney that I found a moment of perfection, of joy so unexpected that it made me cry or that every time I see that scene I feel a swelling inside that I can't explain away nor does it seem to ever ebb, no way.  Disney has too big an ego as it is, why add to it?  Haha

The world would continue to spiral out of control for the next few years...but in that moment, for that 90 minutes or so, everything was as right as it could be.  And as I watched my daughters lay their heads against their dad, their trust and love so real it seemed to glow from them, I wiped my eyes and didn't bother to be embarassed by their bizarre timing.  And as Eric looked at me and noted, he merely took my hand to squeeze it, somehow understanding this crazy woman he married in a weird emotional moment, and then smoothed back the soft hair of each of our incredible, and beautiful little girls.

So does it bother me to now know all the words to "Tangled" plus the songs?  No, I welcome the soft repreive that takes me back in time to a perfect memory, a magical time when the clock ticked just a little slower and love was so thick in the air it wrapped around me like a blanket.  Besides, the movie makes me laugh, and that is always a bonus in our journey.

Happy Saturday!!!  Hope you had a great one!

Sometimes the Past Helps the Most

Our morning started like most mornings in our house…really early.  Bradley was up at 1:30 and then felt that 5 am would be an excellent start to his day… grunt, groan…coffee IV Stat!  The girls of course were bickering.  But I kind of have to pick a side on this one.  Madison is not a morning person.  She sleeps till 6:30.  I have agreed to wake Sydney up at 6:15 so she can get a head start on her day in some peace.  But at 6:30 on the dot she flips the light on in the bedroom.  So while Madison is just starting to hear that horrific buzzing from her alarm clock her sister is also flipping on the bedroom light…and it’s not super bright but at 6:30 am and sound asleep..I imagine it is not unlike jolting awake in prison, or boot camp, or maybe Hell…though I have never been to any of these…I have a great imagination.  So it was sort of like fighting out of the blocks, the buzzing alarm clock in place of the fight bell. 

Things didn’t get much better on the way to the car.  Fighting over who puts their bag where, who sits where… I think at one point they were fighting about who was breathing on whom…but that could have been another morning, although I know that’s happened. 

And then Sydney did something awesome.  I don’t know what sparked it, or brought it up.  If I knew I would bottle it and sell it, for now I just enjoyed it. 

Somehow, Sydney decided to take us down memory lane by drawing on her memories from Japan, and pulling out my memories to make her snippets make sense.  For those who have followed the Sydneyisms over the years, you might enjoy this:

First, Madison had a Little Mermaid Doll.  While Grandma was visiting us in Japan, the doll was oddly missing.  Madison was quite distraught, and we all looked everywhere.  Finally, my mom asked Sydney, “Sydney, have you seen her doll?”  To which Sydney responded “No” but as she turned to walk down the hallway towards her room she could be overheard whispering as only a three year old CAN’T, “Now where did I put that?”  Soon after, the doll appeared again on Madison’s bed…curious… 

After Sydney stopped laughing about that, she brought up the remote control.   Yes, that summer the remote went missing and we tore the house apart for a week looking for it.  I even went through the girls room thinking it might have walked in there on its own or with a little help.  Nothing.  Finally, in desperation, Eric asked both girls if they had it.  Insistent No from Madison, not much response from Sydney, she just turned and walked down the hallway.  I followed.  Sure enough, in the one drawer I had not looked in, she pulls out the remote and carries it back to Dad.  No one had asked her if she had it until that moment.  She remembered thinking it was an old and unused remote so she took it because it looked like a phone.  Ah…  At this point she and Madison are laughing so hard they are doubled over. 

And then she remembered taking my ID card.  I told her I was smarter by then.  Which made her bust out laughing even harder.  I chose not to take offense, little punk.  ;-)  So the story is this: I walked Madison to school then came home to change for work, I would take Sydney with me.  I always carried my Military ID, I just put it in my back pocket for the walk and would put it back in my wallet after I was dressed and ready to leave.  So I set it on the bar, and went to change.  Sure enough, I walk back in and the ID is gone. I start to panic, because I have to get to work and can’t get back on base without it.  I look in our junk drawer, nothing…then I stop.  “Sydney, where is my ID?”  She walks into the dining room with her bathrobe on, reaches in the pocket and hands it back to me.  Now I know she wanted it for play time, then I thought I was looking at a Kleptomaniac. 

After I tell her that part she is laughing so hard she’s crying and trying to defend herself.  She tries to remind me that she didn’t steal everything, she was just curious.  “Like when I spun Arwyn in my arms with a cup of milk, only I didn’t know there was that much milk in there.  And it flew out, and then Arwyn flew out of my arms cause she didn’t like all the milk all over her.  And I said ‘uh-oh’ and mom you said, ‘uh-oh what?’ And I told you I had spilled milk and you asked, ‘where’ and I said ‘Almost everywhere.’ Because I didn’t think the corners counted.”  I started laughing at that, yep corners count so you spilt it everywhere. 

The good news is that very little has gone missing in our house so we are pretty sure that she’s outgrown that phase!  J  The better news is that they were able to shake themselves out of their bickering in order to meet in the middle on the humor field and laugh themselves crazy before heading off for another grueling day at school.  And grueling is definitely tongue in cheek, they both love school very much! 

So yeah for our house a truly rough morning turned into a very funny trip through the snippets of memory they have with some more details to make those memories make sense and make them even funnier for them.  One for the good guys! 

Happy Friday everyone!  The Royals are in the Championship Series starting tonight!  Sydney and I couldn’t be more excited if we tried!  And believe me, we are trying!