And So It Ends

There's always a beginning and an end, that's the way of things.  And so as we come to the end of this year's "31 For 21: Challenge" it is astonishing to me that the month of October is over.  It's not just the blog, though I feel a serenity in knowing that I was able to follow through with a month's worth of blogs.  It wasn't always easy, there were times it was downright tough, and yes - I think that might have been about fifteen days in.  But it wasn't for lack of topics, it was more like lack of emotional energy to give.  Or rather, I wasn't sure I had to give. 

 

Life comes in fits and spurts...we'll go for a whole bunch of months with nothing much going on, and then something amazing...or just as likely something frightening with Bradley.  October was one of those looming months that had the potential for disaster, and yet also had the potential for amazing - perhaps I can even say Awe-inspiring and not be overly dramatic about it.  I think in our case it just fit. 

 

We learned over summer that October was to be our month.  Eric's job was going to be eliminated and if he didn't find something else beforehand, we would be subject to RIF...it's not a misspelling.  I'm not trying to say RIP, although it means RIP for his job and then our current location if nothing was available here, RIF means Reduction In Force.  It would mean we go where the Navy pleases and has a place for him, wow, this sounds ironically familiar.  I mean we even joked how ironic that in our former life, we would be looking for orders and getting ready for our next move anyway.  So anyhow, much like how we ended up in Atsugi, Japan we would be sent as the Navy pleases.  If that was China Lake, so be it...if that was Monterey, so be it...if that was El Centro...if it was Cuba...well God Help Us!  But you get the idea. 

 

October held other promises for us too.  It was supposed to be the end of the furloughs we had to survive over summer, and it was to be the Buddy Walk for Bradley - a brief respite from our daily grind with our most excellent friends!  October was going to give us news that Bradley's puppy was in the process of forming, and was cooking in its mommy's belly.  And it was gong to bring Halloween, which is so much fun when you have little kids...or are a little kid at heart!  Guess I fit in both of those categories! ;-) 

 

So all those things were what we were expecting in October.  This is what we got: Eric's job did go away, but a timely Retirement of a fellow employee allowed Eric to move into his old position.  So in theory no RIF for us.  The job is gone but there is no move for us at the Navy's whim, and considering where the Navy's whim was blowing...it's a relief.  The every Friday unpaid Furloughs ended but in October the Government shutdown began.  The back pay came in for that, but the worry over whether it would be offered and then whether it would come before time to pay rent, well that was a bit heavy on our minds.  But we stretched the dollars as far as they would go and survived this round only to wonder if this is something we might have to do again in January.  Oh joy! 

 

We did get to the Buddy Walk in San Diego, and felt what Acceptance for Bradley feels like.  Our Team was as amazing as always, the love there is binding and will always carry us through, it's just that strong and that important.  The best part, I broke through the shyness of our friends daughters, and by the end of the day I had a new little friend holding me back.  Sometimes life is just that great!  New friends, old friend, and friends all the way from Japan!  We know what it feels like to be Blessed and I hope it happens to each of you so that you get a chance to feel how we felt, how we feel.  Because even up here near our house, we were able to go on a Celebration of Down syndrome walk, and we still had the best supporters walk with us.  There for us, there to cheer on Bradley!  Awesome, in the sense of what the word truly means; not the cheap over use of the 80's!  :-) 

 

Bradley's health took a turn into uncharted territory, so much that we aren't sure what in the world is going on with him right now, but we're trying really hard to get ahead of it.  But he also is throwing in some new sounds and really attempting to turn a lot of those sounds into words.  He really, really tried to repeat Daddy tonight in saying: "Trick or treat!"  and "Candy!"  An innocent bystander wouldn't have heard it, but we know his sounds and how often you don't get any...these were concentrated efforts to mimic sound.  Beautiful. 

 

We don't have a puppy on the way yet...but everyday will bring Molly closer to going into Heat and then well...we all know how those things go from there.  It's a matter of time, but we were sure holding our breath throughout October waiting for the magic moment when we learned the news.  We're breathing now, because well, I can't hold my breath for very long anyway.  :-)  But it's coming, and we know it's coming and the puppy will be on its way before too much longer. 

 

And then there is Halloween, what a great night.  Bradley walked around a little last year, but wasn't all that interested.  He had a lot of interest this year.  In fact, in some areas a little too much.  But if you want to talk about beating Challenges...here he comes!  He walked to the doors this year more often than last year.  Sometimes he waited for candy, sometimes he assessed and walked away.  When we first started, he wanted to walk in to everyone's homes.  In fact, he couldn't understand why we were coming to visit our new friends and not going in to stay awhile, over and over again.  But after twenty houses...ish...he started getting the hang of it.  The bucket was the best toy ever.  He liked carrying that and wasn't thrilled to ever put it down or anyone taking it from him.  He grew to like grabbing the candy, he thought putting that into his bucket was super cool.  Not as cool as sitting on the sidewalk and throwing the candy in the bucket out, but hey... everyone has their way to entertain themselves.  About this point, he decided it was pretty cool to hold it in his lap in the stroller, and then gave it up to play with his little shoe coverings instead.  He waved to a few people, and signed thank you, but never made a sound.  The waving was a big thing though. 

 

Back at the house, he took a lot of interest in the girls handing out candy, and by the end of the bowl he was throwing (and I mean catch it in your bag if you want it, throwing) the candy into the bags of the kids.  He was quite upset when we ran out of candy.  My shy guy took a few steps out of his shell tonight, just a couple, but really important ones.  It was pretty great!  He went from very upset about things to understanding more of what was going on, and to us, that was huge! 

 

So all in all, October has been one of those really weird months that really tests your resolve, your patience, and your Faith.  We've had some great stuff and not so great stuff, and we've had a lot of emotions running pretty high throughout the house; but eventually, Madison will even out and Sydney will start in...oh, um great...can't wait!  :-)  As for Challenges, it's been another inspiriting month of meeting this one for me.  I love my son, I love the life that he is living and how it impacts the lives of this whole family.  There will always be those that won't accept him for who he is and how great he is, but there are always more that are going to see him, and know him, and be inspired and feel they are better off from having been a recipient of his smile.  I know this in my soul to be true, so I guess my Faith has come through this month pretty well...we had our moments, but where Bradley is concerned, the Faith is strong!  The girls are crazy like usual, but I wouldn't have it any other way.  They are learning to be little adults someday, and by the time they get there I won't be reminding them of things like: "You know this is why Lions eat their young right?"  Oh mom...giggle, giggle, giggle...it never holds enough authority for them and I don't know why.  :-)

 

Greatness can happen in an instant, your job is to be ready to see it, to accept it in that instant, to have an open mind and a receiving heart willing to believe in the beauty that comes from within another.  All of my kids have it, and when you get them together at their ease, and at their truest moments of joy and happiness, you get to witness it!  So from a Pirate, a Cowgirl and Monster, hope you all had a Happy Halloween...and hope your October was easier than ours, but just as great.  I just want to thank you for stopping by to read our blog and be a part of our wonderful, albeit crazy family! 

 

 

"31 For 21: Challenge" 2013...signing off for this year.  My kids will keep growing and life will keep happening here, feel free to check in anytime, there are always more stories to tell.  Until then, think kindly of those that are different from you.  Not everyone can sing, but that doesn't mean you don't love the music.  Good night everyone! 

 

 

About the Puppy

I've been waiting to write about the puppy that is going to join our family in the next year or so...I was hoping to report that the puppy was busy gestating in its mother's womb (if that's the correct turn of phrase); however, the lovely mom is not in Heat yet.  Curse you Mother Nature!  Well, not really.  Mother Nature will do her thing and that thing will happen when it happens.  It's just not going to happen before the blogging for the "31 for 21: Challenge" is over.  But that's okay, we'll still talk about the puppy.

Once dear Molly goes into Heat, she's going to be inseminated and then in a short nine weeks (man, don't dogs have it good!) a litter of puppies will be born and from that litter, they will choose a puppy to raise a puppy for Bradley.  This little Golden Retriever puppy is going change Bradley's world.  Our little boy without true social skills is going to get a furry little brother or sister that will help him fill in some important gaps.  Bradley is going to bond with someone other than his parents and his sisters that is going to love him beyond words, and who doesn't flourish under the onslaught of the true love that comes from a dog? Bradley is trying to put more sounds and words together everyday and who knows he may say this dog's name when they meet for the first time, or perhaps the day it comes to live in our house permanently.  One can only hope!

Maybe it's supposed to work out that Bradley's puppy isn't supposed to come until his birthday, how perfect would that be?  It took the love and kindness of family, friends, and strangers to bring this dog into Bradley's world, why wouldn't all that love pour over into cementing the type of bond these two are going to have?  It does, it will.  We look forward to the connection between the dog and Bradley, and the dog and the family.

Over the last couple of weeks, I've watched Bradley make the conscious effort to start bonding with his cats. He is interested in them and what they are doing, how they are moving, and what the odds are that he can actually catch one of them.  For their part, the cats are getting used to Bradley.  Now that he is moving around after them, they are offering more opportunity for him to approach them and pet them.  He experiments with petting, and then he tries out how to run the length of their tails, no matter how short.  The cats are incredibly patient, they don't stay long, but they stay long enough to assess him and wait for that moment when he looks ready to sweep everything off the ottoman and then they make a run for it.  They are smarter than Yuna's water bowl antics imply!  :-)

And it's not just the cats that he's starting to pay attention too.  Today Bradley got to see our neighbor and his two little dogs.  Not only was Bradley reaching out to pet the dogs, he was verbalizing!  He was making lots of great vocal sounds, some even stringing together, it was so cool!!!  I don't know what he was telling the dogs, but he had quite a few stories to share with them.  He was so excited by the puppies, he even shook hands with our neighbor.  Bradley is not one to reach out to anyone, he's a pretty shy little boy.  I loved seeing all of it.

So at some point in the next few weeks we will get the word, and I'll be pulling up all kinds of puppy gestation information while we chart the pregnancy and then celebrate the birth of Bradley's Buddy.  Once we have a name of the puppy that will grow to be part of our family, I'll show him pictures and do a lot of repetition to see if I can get him close to saying the dog's name, and maybe a little recognition to help him overcome enough of his nerves to approach and say Hi, and maybe even fall in love the day they finally meet.
We're definitely still pretty far away from the day his dog makes our home its home, but we are so much closer than we've ever been.  We are all very excited and since Bradley doesn't understand yet, we all carry a little extra inside us on his behalf!

So I guess as far as challenges go...for right now, we're just trying to maintain our patience and keep our excitement in control until the day comes when we get to welcome another furry child into our home.  So for the Challenge, I didn't get to spread the word that the puppy was on the way, but I did get to tell you that the way of Nature is bringing us closer (though I don't know that the pregnancy will happen at all naturally!).  HAHA.. But here's the good news!  For some reason, the first week of November is Down Syndrome Awareness WEEK, I don't know why this is but who knows, maybe I'll have some exciting news then!  ;-)

It's a comfort to all of us to know that the dog is going to be coming.  Aside from all the positive effects that the dog will give to Bradley and his life, it is something we can depend upon.  The rest of our world is just a bit crazy and up in the air right now, but at least the dog provides something solid to hold onto, and the girls always need that!

A Little Sydney

There has been a lot about Madison being mixed in lately, drama sometimes takes the center stage.  So since I don't want you all to think that Sydney has left the family or anything crazy like that, I wanted to reassure you that she is still making this family run and making this family laugh.

So for all my Sydney fans, this one is for you guys!

As you all know, we've been waiting for Bradley to talk.  We sign to him and sometimes he signs back...sometimes like today, he gives me two signs together, which is truly exciting!  Anyway, for a while now he's made these g sounds...and they are like goo's and gaa's...well in the last few weeks he's been repeating the sounds together.  Sounds like "goo gaa" and to us it sounded like "Good God."  Well, it sounded enough like this that Eric would say: "Good God!" every time Bradley would say it and then we'd all laugh.  So hearing Bradley sound like he is trying to say "Good God!" more and more we changed it to try and get "Good Golly"...yeah, only that sound he can't make.

So this is how this evening started:

As I was in turning on the computer so Sydney could do her homework, Sydney comes into our room to show me her pens that our friend sent her from Japan.  She draws a squiggle and then says, "Watch!" then proceeds to erase the squiggle.  "Cool right!?"

I tell her, "Yes, very cool Sydney!  Those are very cool pens and should you be missing one, you shouldn't look for it on my nightstand."

She stops and looks at me for a second, "Wha???  Ohhhh!!!!  HAHA you're funny mom!"  Off she goes to the kitchen to finish writing the part of her homework she has to type.

A little later, I hear Bradley in the living room and he's making the "goo gaa" phrase again.  So then I hear Sydney yelling from the kitchen:

"Daddy, Bradley is saying 'Good God' again."

Dad, being a brat yells back:  "Tell your Mom."

Before I can respond to tell him he's a brat, Sydney yells again: "Mom, you need to tell Daddy that he has to stop saying that to Bradley!"

Thank you Sydney!

There you go, sometimes the challenge is to keep from laughing out loud and letting Sydney how much control she has in running this house!  ;-)   Can you believe it, 29 days into the Challenge and only two days left!  Have a great night everyone!

Day 28: Always Trying to Balance

Leaving Madison at school this morning was actually pretty tough, I felt like I had just dropped her off at Kindergarten, but I didn't get to hold her hand into the classroom.  She mentioned to us on Friday evening that she was told by a friend that she no one likes to hang out with her because she's annoying.  Ten days of Fall Break and this is what you finally tell us two days before you go back to school?  Ah, good grief!  Really?!

At first, I could only stare at her.  What was I possibly going to say that was going to make it all right?  What could I possibly do to fix anything in her world right now?  And how could I stop her from crying?

So first we tried to diffuse the situation.  I commented to her that she can be a bit overwhelming.  And I told her that perhaps she's not so much annoying as, more intense than kids know how to handle all the time.  I thought that perhaps the kids find this passion and intensity more than they know how to deal with it, leaving them feeling overwhelmed.

And that made her cry harder!  Go Mom!  Now I tried to get her to listen, really listen.  Madison is desperate to find her one true best friend.  It turns out those are not so easy to find these days.  Seems like the girls at this age just want to be besties with ten other girls that allow for them to cycle through them as they see most fitting.  It's not that Madison is opposed to the ten Besties, but she just really wants to have one friend she can confide in, to depend on, a friend she can trust.  She wants her friend who just moved to San Diego to come back.  Or even her little friend that lives here in town but goes to a different school, to come to her school.  Anything that would give her an ally so she isn't walking around the school always wondering which one she is annoying today.

See I have a best friend or two.  I have some women in my life that are there for the sole reason that they can see the best parts of me and make them stand out.  They are intent on my well being, and they take care of my heart and soul...all of which they guard carefully.  I try to return the favor for them as well.  But I tell Madison all the time, I was in 9th grade before I had a lasting friend, and it wasn't always perfect.  We had our growing pains, but we're pretty good now.  And then it was when I was in College that some of my known friends in High School, became everything, and even that fades and wanes.  I tried to explain to her that life puts people in your path for a reason, and sometimes they stay and sometimes they don't.  And sometimes, they slip out of your life without a word and a moment turns into hours, into days, weeks, months and then years and you realize that that's it...they've moved out of your life and you can't even remember when you said good-bye that last time, because you never thought it would be your last time.  You realize that had you known, you might have been able to stop it from happening, but then, that's the way of things.  People are going to move in and out of your life in order to make sure the person you need to learn from will be in place at the right time.

Right now, she feels like no one is in place.  So we came up with a plan and I coached her, because that's what I do.  She comes to me broken and apparently, I have to try to glue her back together and coach her on how to walk through the landmines that are waiting for her.  And she's such a good listener and so brave. She'll say one of the options I give her, no matter how much it puts her out there.  For example, her best friend last year was this little boy, and they hung out at the Club together and were in the same class.  Well, sadly, he got tired of her and started talking behind her back.  My advice was to speak to him directly.  She did.  She went to him and said "The girls tell me you think I'm following you around all the time.  I thought we were friends, I guess I was wrong.  I won't bother you again."  Her mother was not brave enough to do anything like that till I was in College!

Good grief!  Is she annoying because she's brave?  Is she annoying because she will let someone know when they are hurting her or someone else?  Is she annoying because she comes to school with conflict resolution plans in place and implements them with accuracy and expediency?  :-)  UGH!  If that's it then she's going to hate me long before she's a teen-ager and her hormones tell her to hate me!  Yikes!

So yeah, the plan.  She said she wanted to go ask the teachers at Nutrition Break and at Lunch Break if she could help out.  I was hesitant at first, I mean how can you make a friend in you hide from the kids.  But then I thought, maybe it's not such a bad thing to get away from them all for awhile.  I told her that much.  I also told her that at some point someone will ask her where she's been or where she goes, or why she does what she does...and I said you be honest and tell them you were told your friends find you annoying and you didn't want to annoy anyone so you found other things to do.  Because my theory is that there is still some followers to the girls that got in trouble and they are bubbling over to other kids.  I think that a couple days without Madison around will help a few realize that they miss her being around.  The ones with real friendship potential are the ones that will seek her out.  God please let someone seek her out!

I worried about her all day long.  When she comes into the door after school, she practically dances.  I ask about her day, she tells me great!  I ask her about lunch and she says she ate by herself and read her book.  I ask her if that was all right?  She tells me it was, it was a little sad at first, but it was okay and the other girls walked by her like she wasn't there.  Those evil girls that still hold a part of my daughter, those evil girls that should they invite her to their table she would think about going because she misses the one girl very much and wishes they were still friends.  But she said it was okay, and she was good.  Then she smiles really big to tell me that the boy that has been friendly to her extended more friendship today by getting some classwork for her in their class that afternoon.  She told me that when she said thanks, "He told me, 'That's what friends do.'"

So in my attempt to help her back-off and let the girls that want to be her friend because they like her, come to her and be her friend; has apparently been a lesson in how to play a subtle game of hard to get with the boys...cause one has already come to take the bait!  How the Heck did that happen?  And it's not just any geeky little boy either; this kid went Scuba diving (yeah, he scuba dives) over the break and got bit in the leg by a shark!  Has the bandage to prove it!  Then he kicked at the shark and they got him away from it and since he was at school today, obviously it ended well.  But still!  He might have just kicked the whole One Direction! band to the curb with that story alone (however embellished it may or may not be)!  Holy Smokes!  So at the end of the day, she had a pretty good day at school today.  I may stay on pins and needles until she Graduates from College, but even then...if she calls me, I'm going to coach her.  I'm going to help her to confront the issues and hopefully do it in a way where she comes through it with wisdom and less scars than the Shark bit kid!  If it were allowed I'd give that kid a big hug just for being nice to her today!  Please don't let him drink Jerk juice before bed tonight!!!  HAHA....

As for Bradley?  Well, he seemed to sense my distress today.  I was on the receiving end of a whole bunch of kisses and hugs.  Even a few games where he wanted to give me Eskimo Kisses, over and over!  He even made me laugh with great purpose by putting his blanket over my head, giving me a kiss, then yanking the blanket off my head to say: "Boo!"  He rocked in his OT today and he finally ate this afternoon.  From 3 pm to 7 pm, he fit in three meals.  I'd complain if I weren't so grateful! And tired!  I cooked like a mad woman tonight, chicken with stuffing, baked beans and cranberry sauce...all these I knew he'd eat!  Sometimes you just have to bring out the big guns!

So the challenge is not to live with a child with an extra chromosome in your family...the challenge is to learn to live and to thrive with whatever God gave you in your Seabag, leaving plenty of room to add who and what you need as you need them, and knowing sometimes you have to lighten your load.  You may never want to let go, but sometimes what they need is not you, and you have to let go.  I don't know how to help Madison yet, but I am hoping that with time this will become one of those things that will work itself out as it is meant too.  But until then, every time I pray I ask for the right words, I ask to give her what she needs to hear to help her the most.  She didn't like to hear she can be overwhelming to people, but she listened anyway and she's trying very hard to find her path.  Nobody ever said Mondays were easy!

Have a great night Folks!

A Very Special Concert

My girls are trying to learn how to play a clarinet and a trumpet.  It's only their first year, and this is a critical time for them, now is the time for them to stick with it or head for the hills.  After today, I'm pretty certain that my Trumpet player is a committed lifer.  My Clarinet player might be, but I am wondering if she might be making a move to brass.

At the end of September, the girls and I were sitting in church and while I was flipping through the program for the service I came upon the Concert Series advertisement.  I was thrilled to see that Presidio Brass was coming in October.  The girls recognized the smiling face of our dear friend who holds the honorary title of "Uncle" because he means that much to us.  His wife is Godmother to my kids and she's "Aunt".  So we've all been waiting for this day for about a month, the girls were just a little bit excited.

We were neighbors back before the kids, we became best friends, we became family.  Time and distance have no place other than leaving a longing for more chances to spend time together, a reminder of how important the time we do get together really is, especially for me.  She is my best friend, my touchstone, if you will - my kindred spirit.  No matter how much or how often my world may spiral out of control, she's always there to provide a steadying force I can start over from or in the middle of a hurricane, a port in the storm.

At the concert today, my girls were in awe at seeing someone they love move into the role of artist, and to the girls, that's the same as superstar.  But beyond that, beyond the initial awe there was spellbound, riveted attention.  Madison watched and listened with a concentrated intensity that was sweet to see.  I began to wonder if she was overwhelming in her intensity, but the guys seemed pretty okay with it.  I mean who doesn't want to experience hero-worship right?

Sydney absorbed the music, her hands moving as she watched as if her brain was taking in so much so fast she needed an outlet for her excess energy.  She plays with her hands, almost all the time.  I wonder if her mathematical brain isn't always working.  I wonder if she needs the chance to let go a bit through the movement of her fingers.  I'm not sure.  She seems to do it more when she's anxious, today was our first glimpse of her doing it during extreme concentration and focus.

The girls are now officially groupies and proudly wore their new Presidio Brass t-shirts during the second half of the show, and if I'm not mistaken, Sydney is sleeping in hers as we speak.  After the concert, they were there to help the group sell their shirts and CD's and whatnot, two little minions torn between really yummy snacks and hanging with the band.  Five guys that found it in their patience and compassion to answer lots of questions and help further our daughters' love of music by making the whole experience so incredibly fun and exciting.

There are always moments in our life that will last forever, imprinted safely on my heart.  The Cheerleaders this summer gave me one of those moments with both girls, but especially with Madison.  You can't miss these moments because typically they have so much power that they make the girls cry, or me...most often me.  Their "Uncle" dedicated his highlight song to them, and it made me fight very hard to keep the burning in my eyes from turning into tears.  It was just one of those special moments that became a gift that they will never forget.  Considering it was one of my all-time favorites, "Moon River", I was a bit overwhelmed. Madison managed not to cry, but her smile upped in wattage just a little bit higher than where she'd been; and she leaned towards the music just a little more than she had already been.

We followed all that with a wonderful dinner before our beloved friends headed back towards home, and as we drove away I looked at Eric and had to admit that the hardest part about not being in San Diego is not getting more time with them.

There are so many ups and downs in our life (this time no pun actually intended) that we often just learn to accept what is given and make it something amazing.  But on our journey we have also found that sometimes as we are accepting of a moment, we realize that it is the most incredible of moments, and that something amazing is coming to surround us.  We work a little harder to bring amazing into the girls' lives.  Sometimes Bradley is the catalyst, sometimes it's just being aware of things going on and paying the proper attention to put the girls in the right path.  Either way, after a day like today, we can feel the Blessings circling around and we can feel what amazing is supposed to feel like!

I can't think of a better way to end a Fall Break and send the girls back to school tomorrow with amazing stories to tell.  Friday might have gone haywire, but Saturday and Sunday gave back all the good stuff amplified!

Have a great night everyone.  I can't believe we're at the last Sunday in the "31 for 21: Challenge," but what a great Sunday to have!  :-)

A Good Saturday!

It's been a good Saturday.

We had planned for a great day.  I admit that I was a little concerned after yesterday, I was worried that a great day we had hoped for would turn into a Keystone Cops debacle.  Turns out, no keystones, no cops...a little debacle but in the end it was all good.  At the end of the day, I even learned a few new things and that will always make for a great day for me.

Eric let me sleep in this morning, and after making a valiant effort to offer to get up with him and Bradley, he sweetly refused and I turned over and feel asleep again.  I woke briefly when the cat decided to climb on top of me - I thought that might be it for me, time to get up but she started purring and well, right back out.  So that's it...see a really good day and a cat purring can put me right to sleep!  HAH!

Just kidding!  There was actually more in the day.  We'll just start with the cats, why not.  I'm working on taming our youngest cat to be more user friendly towards the girls.  Arwyn will sleep with Sydney, where she can pet her as she falls asleep - but not Yuna, Yuna is elusive.  So I've been working with Yuna and she is now to the point that she'll climb up and sleep on me at night, but before whenever I turned over she bolted...now I can move left and then right and I can't shake her.  She just starts purring and kneading my leg like she's laughing at me.  Oh well, she'll be transferring to the kids before we know it.  ;-)  I have faith!  HAHA

After the joy of sleeping in, we had other exciting plans for the day.  Last weekend we went to San Diego and enjoyed the Buddy Walk and our Family, I mean Team down there.  This weekend, we decided to attend the Down syndrome Celebration walk that the Rainbow Connection Resource Center put on.  I guess the Buddy Walk for Los Angeles was going on this morning, so they intended for this to be a small alternative to driving to LA.  Since we don't know anyone in LA, we were okay to stay up here.  We didn't know if we would even have a Team up here, our greatest support has always been in San Diego.  But we went anyway, and we were surprised by those that are more than willing to support Bradley in all ways.

We were honored to have some of our new Physical Therapy friends join in the walk with us today.  These are the ones that kept my shoulder functioning for as long as possible while Bradley was too fragile for me to consider surgery.  Once I had the surgery, they are the ones that are helping me to get my shoulder back together better than ever.  And I have a few glitches still, but not too many..I am almost back to superwoman status!  :-)  Or something like that anyway. ;-)  But these newest members to our Family, I mean Team...they work on more than my shoulder.  They know me, they know my family, they know what we've been through with Bradley and they care very much where he is today and where he is going.  These guys are invested in Bradley, in his future, in all of us.  And in them I have found treasured friends.  So yeah, look how great this day was!

The walk was small, the group was small, but not too bad when you consider the amount of small advertising that was done to prepare for it.  If they decide to make a go of it, there will be plenty of "Buddy Walkers" to come on out and support Down syndrome and Awareness in this area.  It sort of feels like we might be making some headway on this.  Maybe we're getting the word out and maybe we're helping the baby steps forward towards Acceptance.  Wouldn't that be fantastic?!  :-)

We're so very happy our friends came when they did, Eric and I had both been turned off by an over-bearing parent that almost had us backing away and reminding us why we don't spend too much time hanging out with other parents of differently-abled kiddos around here.  That extra chromosome just makes the kiddo amazing, it doesn't always create likeable parents.  ;-)  But oh well, we managed to get through it and still have a really amazing day, possibly in spite of them?  Probably more like once we had our Team, we were happy and secure and not much had a chance of dampening our good spirits.  It's amazing the power of people that care about you, and how nobody else can really get to you when they're around.

We finished our day at the playground.  The girls bailed on their brother as is their habit.  I don't know why they do this, but offer them other kids and they forget they have a brother.  But that's all right, Bradley and I played together instead.  I found it fascinating that when he got up on the platform he was afraid, there are big holes in the decking and it's the same color as the sand below...together, it sets Bradley on edge and he can't determine deck from ground so much that I could feel his whole body shaking in his fear, but he wouldn't come to me, he would hold my hand, but he wouldn't give in to the fear.  Instead, he moved to an area that felt safer, he retreated to the tunnel.  From here we played the kisses game, I peeked in at each little hole and he would come over and kiss me, then follow me to the next hole.  Out of the tunnel, his fears were bigger than him, but not stronger than him.  What an amazing kid, shaking from head to toe...but happy to be right there playing.  He's my hero!  He embodies my favorite line from We Bought A Zoo! : "All you need is 20 seconds of insane courage, and I promise you, something great will come of it."  He lives this.  Madison lives this. In her way, so does Sydney.  Not sure where they learned it, but sure am hoping that I can learn it too.  :-)

So yesterday all those big plans went to the wayside and were not frustrating so much as baffling.  So today, we planned to go for a walk, the good news is, it was a really great walk and in the end we had a really great day!    Now to get Bradley to sleep through the night and not be awake every two hours ...and that will be a great night!  Wish us luck!

The last Saturday in the "31 for 21: Challenge" time sure flies in an amazing way when you blog about those you love so much!   I am one Blessed Mom, I have great kids!  And I have one great husband too.  It takes two to run this crazy house and I'm Blessed to have this partner to help me through all of it.  :-)

Challenge of the Day!

This is how the day was supposed to go:
- Bradley has an hour of fun pre-school time with his Home teacher
- Ms. Sam comes and he plays and then sleeps for hours after a yummy snack
- he gets all his meds for the day
- take the girls to a peaceful breakfast to celebrate Dad getting a paycheck again and the end of their Fall break
- quiet evening at home
- girls help make dinner
- family stuff in the evening
- girls to bed not too late because Madison is still sickly and Sydney gets tired early
- coffee and us time after I finish my daily blog
- off to bed at a reasonable hour because it's been a long week!

And that's why I rarely plan my day, all that work to watch it fritter away in a blaze of glory!  Let's look at how the day really went:

-after two weeks no great memory of his Home teacher.  No great interest in her...lots, and lots of tears and frustration during her hour.
- Bradley feeling yucky most of the day.
- Lots of fun with Ms. Sam, but not inclined to eat or take much of a long nap
- missed one medicine dose
- nice breakfast, girls only argued after the meal, not during
- Bradley's broken cup puts family night at Target and dinner grabbed while out.
- my blog?  Finally getting to it.  ;-)
- Coffee no.  Us time... Sort of while Eric works magic on the suddenly ailing laptop and I'm tapping on my phone.  ;-).
- reasonable bedtime?  Shot to Hell the moment Madison started crying about her friends at school, and the one that told her some find her annoying because she follows them.  Good grief!  Really?!?!
- ninety minutes talking her down, laying out strategies and plans while encouraging her to be her own best friend and let others come to her.  All the while, I find myself holding my breath, wondering what happens when no one comes to her in the next few months to years!  Then what can I say?  The truth is that I didn't have a best friend in Middle School till the 9th grade.  Even then that was a rocky road, but worth it.  My closest friends came from that time, from College, from my adulthood.  Middle School just sucked!  No way around it and no way to avoid it: we just have to plow through.

Turns out things rarely go as planned in our house.  And for the most part, that's okay.  It was better to have this discussion with Madison on Friday night. Not Sunday.  Bradley feeling yucky?  Yeah we're pretty used to that and just work towards getting him healthy again.   As for Middle School, about the time we pull Madison from its claws it'll be gunning for Sydney, we just have to help them survive it all.  Oh joy!  How exciting!  Where is that sarcasm font!?

Madison went to bed feeling better.  I feel horrible inside.   I want my kids happy, well rounded and to hear her pain is almost too much to bear!  All I can say that's good is that she's still comfortable coming to mom and dad to unburden herself and let us try to help.  She stops that, she stops talking to us and we know we're in trouble.   So I guess we can say we met the challenge today, let's hope it helps her win the battles at school and in her life. 

So it wasn't the day I had planned, but that's okay!

Welcome to the last Friday of the "31 for 21: Challenge!"  Have a great night everyone!!

Sleeping in Chairs, or Where Ever...

It's amazing the things we'll do to create harmony and peace.  A perfect example, think about how many times you've rocked and jiggled and juggled until you found that perfect spot, that sweet nirvana when that fussy baby of yours goes quiet and falls asleep.  And we've all had those nights where the transition to crib is just too much and little eyes might not even open, but the cries start all over again.  So if you're like me and Eric, that would lead to the continued process towards sleep, and I'm not gonna lie, when sleep comes again - we've both spent hours sitting awkwardly in a rocking chair sacrificing good back and neck health for the better welfare of one of our kids.  We've both faced early mornings bleary eyed and exhausted while our little kiddo is bright eyed and well rested.  Bradley has spent long nights together with one of us, and often both of us.  Sleeping in a rocking chair at home is much better than sleeping at the hospital, in any chair or bed like contraption.  But if he's there, so are we.  I've held him in my arms to help him go to sleep while standing for hours...believe me, sleeping awkwardly on Dad's couch last Saturday night was a cakewalk!

Do we do this the most with Bradley?  Yeah, I think on the sliding rule it sits more on his end, but make no mistake: we knew more than our share of sleepless nights and extreme compromises for both girls.  Madison was a reflux baby and though that didn't make her colicky, she might as well have been.  Until we had Sydney, we thought babies just cried that much and spit up that much, we thought it was normal.  HAH!

Madison also wore an Apnea monitor for a good six months.  And we knew that wasn't normal, but we were attached to this kid before she was ever born, so we learned how to force her to take bitter tasting medicine, and to attach electrodes and work this heavy monstrosity of a machine I had to take everywhere! Now why could we do this? I think because on Day 4 of Madison's life we had to watch them milk her heel for a blood draw.  It almost killed me!  All drama aside, watching my child scream at that tore me up inside and if Eric hadn't been there to hold me up, I would have crumbled.  Oh and there were all those shots, I cried with her the first time then she was put on the Apnea monitor, I didn't cry at the shots anymore.  I did lay awake for hours listening to the sweet music of her breathing though.

Sydney was such a Blessed relief, and such a port in the storm that was coming.  Sydney suffered minor reflux, but she could also self comfort and put herself to sleep.  She didn't cry a whole lot, but she laughed a whole lot, and for the first two years, Madison just called her "Baby."  Sydney's had her health issues, but hers came after some Bradley prepping.  Prepping for us and for her.  She doesn't see all her brother goes through, but she knows and her incredible imagination fills in the blanks with details faster than I can supply her with the facts to ease her mind.  And we talk a lot with her lying in bed and me kneeling beside her bed as she lays down at night.

You learn a lot being a parent, you learn about yourself.  Somewhere along the way you choose the moments, the lengths you'll go to fix this one thing, to bring peace to your kids - and to you.  Did Sydney need me to hold her to put her sleep?  Nope.  But sometimes I held her anyway, cherishing the peace that comes with holding a sleeping child.  Sometimes I gave that gift to myself.

But there are other things that I give myself as gifts to bring myself and my kids peace.  For example, when we get out of the car in the mornings after dropping the girls at school; I admit it, I stand a little longer outside during the sunny mornings because Bradley buries his head into my shoulder and I get the best cuddles!  And I admit to the moment of bliss when someone new comes in, or when Bradley's Respite Care worker comes on Friday mornings, I get the best cuddles, and since he LOVES playing with Ms. Sam, I don't even feel the slightest bit guilty! ;-)  I work at finding those moments of peace, and joy...and I make a note of cuddles and how to get repetition when we 're at home, because at the hospitals - I get them all the time because he's so sick when he's there.  I want the ones at home most.

Today, with a touch of Fall in the air, not too hot, and not too cold, with no wind blowing...the kids played by a fountain.  Sitting there together...it took me 45 pictures, but I got it...I got the greatest picture I have of my three kids yet!  I was thrilled.  Their smiles were real, were sweet, were perfect, and in that moment, they were all three at peace and in my heart I felt it...I felt their harmony.  We're trying to teach them how to find that peace, to enjoy that harmony they are meant to have with each other.  Most the time getting them to just speak kindly to each other is like pulling teeth without pliers, but then there are days like today, moments like these that are the ones that make all those sleepless nights worth it.  Every awkward position designed to bring peace and calm to my kids has given them an ability to find a peace and calm in themselves, has taught them to be patient.  And it certainly took patience to get one almost four year old boy to not only hold still, but smile at the same time!  I thank my training in the past to help me contort myself for 30 minutes, leaning on a knee waiting for the perfect shot and getting some pretty precious ones on the way.  

He's looking

Great smile!  Almost there!    

There it is!  That's the one I've been working to get!  LOVE!!!

 Some challenges are just worth the work.  The "31 for 21: Challenge" is always worth the work, but raising these three kids...never a dull moment and worth my heart and soul!  Man, I love these kids!  Just don't tell them or they'll never listen to me again!  ;-)))  Have a great night all!

Back in the Books!

Turns out I'm the mean mom.  I know it and I accept that that's the job that I signed on for.  I'm just not one of those fad type moms.  The only thing I let them get into that was pure fad were those Silly bands.  Why did I?  There is just a little bit of Japanese culture in me that makes me feel like if someone gives one of the girls a present then they should reciprocate in kind.  So after a few days of the girls being given Silly Bands from their friends, I gave into the pressure and we bought some Silly Bands and the girls were able to give some back to their friends.

The last couple years I keep getting the request from Madison to read the Twilight series.  Now I read them, and I did long before I knew there would be a movie.  We were in Japan and didn't hear a whole lot about what was up and coming in the world of entertainment.  Anyway, I enjoyed the first book and the premise, I considered stopping at Book 2, but powered through it in the hopes it would get better.  It did. Great reads over all...but for my eleven year old daughter?  Hmmm.  And I have all these parents of her friends who want to put in their two cents worth because Madison likes to bring it up around all of them.  I just hold my own on this, I think she's too young...all that teen-age angst, ugh.  Is she ready, can she handle it?  Yeah, probably.  But here's the thing, now it's a stubborn versus stubborn issue.  She won't let up, I tell her to stop asking me and she'll ask me daily anyway.  And every time she brings in yet another mom with her opinion that is opposite of mine, it makes me want to wait longer to let her read it...I don't like to be manipulated.  Right now I am planning to give her the first book for Christmas...I'm hoping she doesn't bug me so much that my stubborn streak makes me dig in harder and decide to do it for her birthday!

And if that's not bad enough, she wants to hit the Hunger Games series as well.  Same thing, bring in the other moms, most haven't read them either, but they get on the list for teen reading and they figure what the Heck, let 'em read it.  Of the two series, this one pushes me towards the first one.  When I was a kid I was haunted by Lord of the Flies and to be honest, Madison is incredibly more sensitive than I was.  I am just not so certain I want to open this door to her yet.  I am strongly opposed to the story, to the very idea of this story and I really don't want her reading it yet.  Eric and I watched the movie as the idea of him reading the book is laughable...and I have to say the movie was well-made, but the story was really rough.  The thing is, this isn't her kind of story - but one that her little friends have read and don't really understand in the least. For some kids, this is no big deal, but I've seen the attitudes and behaviors coming off these girls at school, and I stand by my decision...this series can definitely wait until she's older.

She tells me daily everyone has read them except her.  She adds in that everyone at school has a cell phone except her.  And I just shake my head and tell her to forget it.  She's not guilting me into getting what she wants...again I don't like to be manipulated.  And I get all this from her, how she should have all these big girl privileges and they slide off me like water off a duck's back...then she sits in her brother's rocking chair in his room and asks me why her dad doesn't read Skippy Jon Jones to her anymore...uh....cause you're eleven and well, no one knew you wanted someone too!?  And then she hits me with why don't I sing her songs at bedtime anymore?  Well, I don't know Madison, cause I'm always trying to get Bradley down...and well gee hon, you're older now...you can tell me when it doesn't sound good, you couldn't when you were younger! That makes a difference let me tell you!  Good grief!

So my daughter is growing up so fast I think it just might scare her more than me, and believe me - her growing up definitely strikes fear into my heart!  :-)  But here's the thing, she's so worth it.  All the frustration on both of sides right now, this is what I know...she is worth it now and when you see the woman she is going to be - she will amaze us all.  Her sister and her brother are going to follow her with all the frustrations and joys that we have with Madison.  And just like with Madison, they are worth it and we all just need to wait and see the amazing adults they are going to be!

So yeah, the Challenges come in our house...sometimes with Bradley but just as often with the girls.  Maybe a weird topic for the "31 for 21: Challenge" but remember this, Madison is being shaped daily by her brother and her sister.  One's teaching her to fight and one to love, and together all three will learn how to be there for each other.  At least, that's what this mom is hoping for!  Have a great night all!

The Ultimate Challenge!

Okay, so we all know that there are more challenges in our life with Bradley than we thought there would be, and though the girls are typically developing...I have to say their challenges are not always so obvious and cut and dried either.  Today of all days, the girls have definitely decided to throw up as many challenges that can be pushed into one day.  ;-)  Grrr...

So, Bradley has decided it's time to tackle the ultimate Challenge...the potty training challenge.  I have sat back and while gently introducing the notions of potty training, I have taken into account the lessons taught to me by Sydney as she was trying to potty train.  I understand that using the potty is the last bit of control a child has on his or her life.  After they give up those diapers, that's it...they have to bend to the will of every one else.  Mom and Dad who force them into character underwear that they may or may not like till they can finally choose...but they have to wear them...no more going commando till they are well into the age of Mom and Dad not ever needing to know those details.  You give up those diapers and then that's it; someone is asking them to either go to the potty or preventing them from going.  It's the usual way of things, and it's the way of learning that leads to Independence.

For the last year or so, we've had a potty in the bathroom (good place for it I know), I mean - we have a kid potty in the bathroom.  When Bradley is ready to climb into the bath we set him on the potty and see if there's a chance that Bradley might go, something.  It has been hit and miss constantly, our hits are small attempts that we celebrate with great joy!  Lately, there has been more to cheer about.

Bradley is aware of what the potty is for now.  We take him in to give him a bath and once he's naked as the day he was born, he goes and lifts the lid on his potty.  Then he sits and starts to pee.  We get a little bit, then we clap and I sign and say, More potty?  And he grins and he goes a little more, then we clap give high fives and fist pumps, then I ask again...he does it again.  We sit there for quite a while, he goes a little, we say Yeah, and if we forget to clap he grabs our hands and puts them together for us.   And we laugh knowing full well that we're toast now.  We know that he's going to expect us to clap from now on.  I have this horrible of image of one of us standing outside the bathroom door cheering our ten year old (God help me, 20 year old?) for a successful potty experience!  Well, maybe just the next couple of years till he gets the idea well in place in his mind and then comes to completely understand the whole process.

For now, we have these small victories.  We have Bradley who understands that he has been given a tiny little potty that he has to adjust his seating for in order to work on getting his pee into the pot.  That kind of awareness is amazing.  Further, we have a little dude that is trying super hard, and I mean it...that he's going to surprise himself with what else he can do in the potty and probably quite by accident.  But like most kids, he has his favorite part of all this, and though the clapping is pretty great...flushing the toilet when he is all done is pretty awesome too.  We'll forget about those little parts he also enjoys where he walks around the bathroom and practices his aim at anything but the potty.  Sigh...

But hey, we are all just works in progress...Bradley is moving along at his pace, working on the things that are apparently important to him right now.  We'll still be working on gluing and pictures and all that good stuff, but I guess we're also going to be running with these more independent skills as we move along his path for now.  We're just excited that he is interested in this momentous life changing event, and we can only hope that with time and repeated practice he'll pick up this skill as painlessly as possible.

For now, we're clapping, high fiving, and fist pumping like there is no tomorrow.  If this were an Olympic sport, we'd be looking for sponsors - that's how exciting this stuff is right now!  ;-)  Who knew right?

Challenges in the challenges...that's how we roll in this house!  Putting to bed day 22 of the "31 for 21:Challenge", have a great night everyone!

"Helping" Make the House Run

We spend a lot of time folding laundry in this house. With five of us there isn't a lot of room to wait, if I do the laundry mountain just takes over.  Most the time I do it and fold it and then let the owners take their piles to their rooms to put away.  The girls hate this part...they think it's a fate worse than death to have to help with laundry, but the idea of putting clothes away is worse somehow.  They prefer the pile method.  They think that I don't walk through their rooms so I don't know that they are wearing clothes only from the pile so that I don't know they haven't put anything away.  Apparently, I don't look at them when they leave the house or go to bed either, like I am not noticing that they wear the same shirt twice a week, sometimes three...  hmmmm...  I admit, the first time I saw this I thought it was just a favorite item...nope, from the continuing pile of clothes I learned quickly that they just don't want to put anything away.

It's not that they won't help fold, they will especially if they get to watch a little TV in process.  I mean I can do this and fold a load of laundry in under ten minutes easy....the girls could take all of Iron Man 3 and still not quite finish the job.  And I try to teach them how to properly fold things, especially the good clothes...but if we stick with the superhero theme here - it's like Kryptonite to Superman.  But we still keep plugging along.  The best are the socks.  Most of their socks have a color stripe or are just plain white and yet, they can't seem to put them together right.  I thought we did pretty good with matching in school, but I think we missed a step in the whole real world experience portion of the test.  And poor Eric, he wears those Nike socks that are sewn different, so that there is a little L and an R on each sock...all they have to do is match and R and a L...hmmm...  I have a basket of clean unmatched socks...in that basket right now I have three Rs, Eric brought two Ls home today that he wore to the gym at lunch.  I'll be able to match them after I do laundry again.

Bradley is much more attentive to laundry.  He will hand me things to fold, and if I don't move fast enough he will climb into the basket to hand them to me from there because I guess that makes a difference in my dexterity and speed challenges.  Once he gets bored with that, he gets out and starts to mosey over to the clothes piles.  He'll stop and look at me and when I tell him "No."  Or "Don't." He takes it as his cue and starts grabbing everything he can get to before I can get there.  Thus ensues the epic laundry pile battles in our house.  Typically, he gets at least one pile on the floor and as I holler, "noooo" and in slow motion go for and miss the pile hitting the ground, he'll drop one more and make off with something, anything will do.  All the while, I hear his giggles as he lets me know that yet again, this has been the highlight of his day!
If Eric is home, he helps me.  And sometimes I am smart enough to save the folding until he gets home and all the kids (well, at least Bradley) are asleep.  We can polish off a basket in about five minutes.  Lately, I've noticed a trend though, since the addition of little girl bras have joined the laundry, I get smacked in the head with each one she has when Eric and I are folding laundry.  He jokingly told her he wouldn't fold any of her slingshots...then in an off hand gesture, I seemed to get all of them.  This was a coincidence at first, and of course I laughed at and teased him without mercy...so that now I am the only one who can fold the darn little things.  He gets great glee from smacking me in the head with them whenever his no look passes get lucky and I am also not looking.  But it's all right.  I will have my revenge, sooner than I like I am sure...but Eric is the one that does 90% of the grocery shopping...so in the very near future Madison will need more than bras and guess who gets to go and pick those little beauties up on the way home from work.... :-)  Teeheehee!   But he'll do it, and he'll tease her just enough to make her realize it's just part of life and hopefully she won't be too embarrassed by the fact that she is a female and going through everything that other females go through.  Well, we'll see...emotions are already running pretty high!

As for the laundry; Madison doesn't realize it, but she's moving into the laundry realm and will be taking over that task while her sister takes over the dish washing.  Sure Mom will have to keep up the cat box for a bit longer, but Bradley is quite good at feeding the cats.  Who knows, with a little more work and practice he might actually feed the cats in their bowl instead of all over the floor.  Don't know why, but the cats are super picky about their food, they insist it be in a bowl...what's up with that anyway?  Furry Snobs anyway.  :-)

But so it goes in our house, slowly training these kids to take care of themselves out in the world, all the while feeling the empty nest syndrome already because I know they are going to go and leave us behind.  Sigh.... Will my girls be good roommates?  Hmm, if Sydney has her own room that no one enters, sure...if she has to share a room there could be problems ahead...hopefully, she'll grow out of her "Pigpen" tendencies!  They'll be great partners, great adults, great wives if they desire...but they will have an Independent streak that will divide the workload in their homes to make their lives fair.  We'll have to see how Bradley does...right now his tendencies seem to be more towards Sydney...hopefully, neat tendencies can be instilled over time!  Hopefully!  :-)  

And you thought the "31 for 21" Blog Challenge would be the only Challenge in our house!  HAH!  There's always something going on in this house!  ;-)  

Party Town

So here's some clinical information for you...  Did you know that San Diego is quite the party town?  Yes, most of you did I see.  Uh-huh...but did you also know that the only time you sleep when you are an almost four year old little boy, is in the car...and the longest sleep you get in a twenty-four hour period will be in HomeTown Buffet?  Yes, that's proven...I've done my research.  I think I can also prove that it has to be the HomeTown Buffet on Clairemont Drive too.  Apparently, there is something piped through the air system that knocked out my son and only my son, who slept through the noise of people eating, laughing, talking, some crying...some people walking by...all of it...didn't phase him one bit.  He did wake enough to devour a half a plate of food...but that took a mere five, maybe ten minutes.

And this is how I know that San Diego is the party town you don't sleep in.  After a much needed bath and snuggly pajamas, my little man sat and watched Monsters Inc. until his eyes closed and he started to melt into himself.  For his protection and comfort I took the movie away which woke him right up!  We're talking what a great eight hours sleep I just had in that fifteen minutes, why would I need more?  Fast forward thirty minutes and he was asleep, we thought down for the count for the night...we thought wrong!  That's what we get for thinking.  We were in San Diego, did I mention it's a party town that no one sleeps in?

So staying at my Dad's, all the kids have one room.  The girls sack out in their sleeping bags and Bradley sleeps in a crib, a real one...I think that one was Sydney's and the one he has at home was Madison's?  That however could be completely backwards, but it's a matter of semantics and property ownership now lies in the fact that Bradley owns both of them.  What a spoiled kid!  Anyway, the girls drift off pretty quick, they were quite tired after the day we had had and I would have been stunned had they made it as late as they wanted to make it.  As it is, they made it barely past when I was wanting them to sleep... 7:00, HAHA just kidding, even I think that is almost too early, I really wanted them out by 8:30.  :-)

First wake-up call came at 11:30.  I'd barely finished my blog for the day and had just turned off the light. Eric had fallen asleep moments before with his finger in mid-swipe on a Candy Crush level and I had just sat down ready to fall out myself when Bradley started crying.  He settled himself and a few minutes later I hear Madison yelling at Dad and then me in her sleep.  Not too much later, Bradley is up and crying again.  So Eric got up with us and actually rocked Bradley back to sleep.  Okay...off to sleep we go.  Two hours later...Bradley is up again, crying in his sleep at first.  Strange. I would have let him go but while he's crying I have Sydney behind me yelling at him in her sleep.  Feeling kind of stuck between a rock and a hard place, I take him to the living room and rock him back to sleep.  Back to the bed...back to sweet sleep...back to Bradley not two hours later.  More night time grumblings from the girls, though neither one is awake.  Talk about your harshest critics.

Finally, at his 4:30 check in, he and I go and stay on the couch.  He goes back to sleep and I just hold him and he stays asleep till 7:00 when an internal clock in his head chimes "Colors" and hour too early.  He's up and traipsing through the house till he can ensure that every other person in the house is also awake and ready to continue the party in San Diego.  What does that consist of?  Oh, well let me tell you!  That consists of following Bradley through my Dad's house, which is furnished much like a 20 year-old male College students apartment.  Sparse, with more videos than furniture.  And yet, it's surprisingly not kid proof.  I look at the place and think, what can he get into?  I mean really.  And then it's running along behind him as he strikes mayhem throughout, thoroughly intent on knowing where everything is so that it can be brought to his level in the most expedient way possible...which is mostly by his small arm sweeping in a larger than believed motion.  Kid can really cover some ground.

Needless to say, home is sweet upon our arrival.  Bradley is busy acquainting himself with all the toys that he knows missed him.  His cats are nowhere to be found once they took the requisite ten minutes to voice their utmost outrage that we would leave them at all, let alone leave them in the same two rooms together.  The food and water is never fresh enough.  I had to search to find the second bowl of water to the extent that I thought I had forgotten to put it down.  But no, our crazy cat likes to shove the water bowl across the floor, I think she does it to drive me crazy.  Well, to portray her displeasure, Yuna dragged the spare dish which was just a plastic bowl, so that sucker had no weight to keep it in place, and it was halfway across the kitchen.  That might be a distance record.  I'd keep track of this stat, but at the moment, the idea of ever leaving the house overnight with Bradley again is daunting at best.

As for Bradley, we know his esophagus is giving him some trouble but we thought the new medicine was helping.  So I guess tonight will be a big test for all of us.  Will he settle in his own bed and be happy there?  Will he acknowledge that this is a sleepy town and just give in to it, or will this turn into the party town?  If the party continues tonight, I'll be making an appointment to meet with his Pediatric GI.  Esophageal damage is no joke, so we won't be waiting too long to make sure that all is well in that area.

Hopefully, San Diego is just a party town and home is where the sleepy live!  If you need me, I'll be the one drinking coffee in order to stay awake for "The Walking Dead" tonight! ;-)

Happy Sunday everyone!  After a great weekend and Buddy Walk, feeling super inspired and tired, and ready to keep up the "31 for 21: Challenge"!  Thanks for tagging along with us!  :-)

Buddy Walk 2013

Waiting in line to get started

Today wasn’t about the Challenge, but it sure was about Acceptance.  It was about a group of people that came together to create a family, some would just call it a Team, but for those of us standing in the middle of that so-called Team, we know what it was, we felt the family that surrounded us today.  Messages came in from near and fear…support and love sent in to make sure that we didn’t forget the “family” that couldn’t be there today.  And slowly but surely, our team gathered into one incredible little group – 26 Bradley Buddy Brigaders this year!  Blessed?  Yes, every moment! 

We weren’t thrilled by the venue for a few reasons.  We had never been there before and worried about finding our Team, and it was a challenge.  There were no trees and the lack of shade was frustrating, but only because this year the sun beat down in all its glory on an incredible San Diego day.  The area was crowded with other events going on, and it just felt like we were all separated from each other.  Then there was the parking issue…ugh and a half.  But the worst part was that we weren’t at our place in Balboa Park where we could gather under the umbrellas at the Japanese Tea Garden Café and have a lovely Japanese lunch.  Considering Bradley was born in Japan, it always felt like that was our place, where we were supposed to be.  

Here’s the good stuff.  The area is beautiful; the day was incredible despite the heat.  And considering Balboa Park is working on her renovations, we were happy that the Walk happened rather than not happening.  Lots of great teams were out today, and lots of happiness and love settled over our group.  Bradley was a little sleepy until we took him out of the stroller, then he was on the move and ready to run the whole way…well, mostly.  Thanks to Bradley, we met a few other families as he careened from one person to the next: behind us, beside us, on the other side of us, through us, somewhere plowing through the ones in front of us….you get the idea.  Turns out his bestest friend in the whole world came along with us thanks to the sun, and he chased that little guy all over the place.  Kid’s name is Shadow, maybe you’ve met him?   Yep, he’s a bit of a scamp the he moves all over the place; but luckily, we were able to corral Bradley in the middle of all of us and keep him not only on the sidewalk but  out of the street.  The heat got to him a bit and he finally retreated to his stroller and his cup of water…considering I was thinking how nice a nap would be right about then, it was a relief for all involved.  I do think some of our neighbor walkers missed his forays into their groups though, they were getting quite accustomed to them and honestly, quite a kick out of Bradley. 

The other good stuff?  The lack of enough shade space, the heat, and the lunch choice (hot dogs and sauerkraut, and potato salad on a too hot day) sent us to another venue for lunch.  We lost a few of our members in the transition, but there was peanut butter and jelly and naptime to attend too, most important matters for our littlest walkers.  So we totally understood those needs!  Good-byes are always sad, but what a day to have with them! 

In a Hometown Buffet, in Clairemont,  we met and enjoyed a long lunch together out of the heat, sitting in shaded AC, with good food made really, really good food because the company was amazing.  Bradley fell asleep in the car, we knew he would.  But we all chuckled when he slept all the way through lunch.  Finally, finally, finally…as the time to leave drew ever closer, he managed to rouse himself and dove into a plate of food.  And I when I say dove, I mean dove!  He devoured his jell-o, and then somehow bathed himself and Eric in the remains.  Bradley loved the mac n’ cheese, baked beans and meatloaf, but don’t forget the peaches…always the peaches.   And what a huge relief that he ate so well!  A great day, filled with wonderful people and a Bradley eating so great…couldn’t ask for much more than that. 

Another Buddy Walk goes into the memory books, another day spent with family…filling the coffers to overflow and letting us know that we are not on this journey alone.  Today is always the reminder that true friendship and kindness do exist and we are Blessed because they both exist in our lives because we have one incredible little boy that chose us to be his parents, because two little girls chose us before him and together those three kids are shaping us into who they need us to be.  It’s not the easiest journey, there is a whole lot of walking backwards, to the side, the other side, and a little bit of a foray or two into the unknown part ahead of us; but the journey is a worthwhile journey.  Bradley’s is a story that should be told because he is a worthy member of this world.  And every year we manage to bring in newcomers to his story, and they walk part of his path with him and then go on to their lives with a little bit of his magic to take with them.  Their gift to us is being there for us, our gift to them?  Bradley. 

Thanks everyone for being there today.  We love you all and can’t ever express what it means to us to have you in our lives!  Have a great night and may you all be as Blessed in your journey as you have Blessed us in ours.  Hugs and love! 

Changing My Path

I wanted to keep today light, but then I caught a story on the IDSC (International Down Syndrome Coalition) site on Facebook. It changed my mind, and in a way I didn't even know about, it helped change the course of my life. It was the story about a family sixty years ago who welcomed a baby girl into the world and learned she had Down syndrome. The doctors were horrible about it then, the lives of these babies were horrific, the terms used to label them, yes. Horrific! It's the password of the day - horrible. But here's the part that would shape the path that would wind down to intersect with my life: Her parents ignored her doctors and they decided to take her home and let her grow surrounded by an incredible love that would give them five precious years before her weak little heart took her Home to Jesus.
They took her home.
They loved her.
They grieved her.
They felt Blessed that she chose them.

 I don't know them. But they aren't the only ones that shaped the future for me and people like me. This family, and incredible families like them chose to defy doctors and society and said no to Institutions and said yes to a family. In comparison, our lives are so much easier with our kids, medicine has not only caught up but there are quite a few doctors that are now invested in out kids health as much as we are.  Now you can find doctors that are saying that it's okay, not spouting drivel of ruination and horror.  But make no mistake, you have to choose wisely if you have the control, because there are just as many doctors out there that fall on the horror side of things.

We didn't have much control over doctors when I was pregnant with Bradley.  But on that day I was worried about a spot on my back, my doctor was not concerned about it, but he was concerned about me being worried and didn't want me stressing myself...so he sent me to Dermatology - it saved my life.  Thank you Doc!  And on that last day, the day Bradley was born, I didn't know my Midwife.  I knew she had kind eyes, I knew she let me have a meal and then an early epidural.  She was patient and coaxed my son from the womb even as he fought to stay.  She respected my information about the quick arrival of Sydney, and planned accordingly.  And in that moment when my son was clear, she laughed with joy as she told me to "Open your eyes and look at your son!"  It was over, he was here - it was time for all the physical pain to go away.

And here is where the decisions from one incredible family sixty years ago rippled through time, space, life to settle into the heart of this woman to share the news that our son had the characteristics of Down syndrome.  The message was that the child we had expected was gone and in his place was this precious boy that might take longer to get where he needs to go; but it would be okay.

The message from every medical person that walked through our doors was simply, it will be okay.  And though no one said it, but I heard her words like an echo: "Open your eyes and look at your son" seemed to sing through every person.   The underlying truth was that our world had changed in a moment, but everyone was determined to get us through the shock and the fear until we could get our feet under us, get the world to stop shaking and we might come out on the other side in one piece.  But no one ever suggested Bradley not come home.  No one ever suggested that Bradley wouldn't be great.  A doctor would later look me in the eye and with a certainty that I felt to my soul would tell us that "He will amaze you!"  It brought tears to my eyes because I believed him with everything in me.

The lives lived before us led to these moments that set me on a path that is wonderful and challenging.  Their pain and their conviction to love shaped lives and changed minds.  Their belief has helped some doctors to choose life and love not stereotypes and prejudice.  The path has brought us to here, where our doctors support us every step, and love our son.  Believe me when I say, we know how lucky we are and what a gift this is.

Open your eyes and look at your son!  He will amaze you!  I thought these words were just meant for me, but I think maybe her words circle Bradley and encourages others to: open their eyes and see my son, for he will amaze them!

Thank you to those who carved the way through the mountain.  We'll keep working and pushing forward, all because you saw your children with love and hope and never gave up.  We will never give up!  I will use the same lens to see my son and I will fight to give him a life worth living and a life he truly deserves!

Awareness....yes...long before this October a small crew on a Navy Base in Japan practiced Awareness and Acceptance!  "31 for 21: Challenge" still going strong!

Good night all!

Almost time to Buddy Walk!

We're headed to San Diego in the morning, we'll stay with my Dad and join in the San Diego Buddy Walk on Saturday.  We've done this every year for the last four years.  The first year we did it because we were in San Diego at the time.  When we moved to Ventura County the next year we thought we could do it up here, but there were two reasons we didn't.  The first was that the closest ones up here are in Santa Barbara or Anaheim...both closer than San Diego, but Santa Barbara does theirs in June and Anaheim in November (usually during Down syndrome Awareness Week).  We couldn't do June, Bradley was too sick to have surgery at the end of May, so we were all just barely hanging on in June.  Now we just forget about June. By the time Fall came around, Bradley was too sick not to have surgery...so we did, and it was our family and friends that came out to be with us at Balboa Hospital in San Diego, that kept us going and helped keep us on our feet through it.  We knew that's where we needed to be for the Buddy Walk.

And that's how it's gone.  Our Team started as the ones that worked with Eric in Atsugi, they are our core team.  They are the ones that have been there from Day One of Bradley's life, and we are honored that every year they keep coming out.  So yeah, San Diego is where we are supposed to do this.  Last year we thought we were doing our last one, the Navy only gives you a few years in one spot and then people get transferred all over the world.  It was time for our loved ones to be transferred, but strangely...perhaps because of Fate, most of that initial group is still in town and still up for at least this one more Buddy Walk.  We appreciate how fickle fate can be, we get it...we've seen it turn on a dime against us, and sometimes for us...so we don't argue with Fate, and we don't bargain too much.  We just accept it for what it is.

This year, we've been given a gift.  These amazing people that love Bradley because he belongs to us, because he's pretty great on his own, they are making a point to spend a few hours with us on Saturday. Along the way, we have some new walkers coming as well, all have touched our lives in the most poignant of ways, and they have worked very hard to arrange lives around a special Saturday in October.

It's super easy to get emotional about Buddy Walk Saturdays, and I say easy, because you don't get much wimpier than me about stuff like this.  Every year is a triumph, a chance to see how far he has come and let those that love him and us, see that...spend those hours to catch up and reconnect.  It's a digital world and a world that moves so much faster than we do in our house, so keeping in touch is never easy.  But these are the people that know when the Buddy Walk is before I do...the ones that send me e-mails or text messages to see if the Team is up and running yet.  Connecting is not just a big deal for me, it's a big deal for all of us. And that feels even better!

Though I'm a little nervous about the new venue, I know that weather wise it will be an amazing day and emotion wise it will be all the best kind filling my cup to overflow...refilling my soul to face a whole new year, ready for whatever comes next.

So this message is to Bradley's Buddy Brigade - past, present, and future - the ones that will be there on Saturday, the ones who have been there, the ones that can't be there this time:  We love you!  We appreciate you!  You are the reason I felt strongly enough to start blogging in this Challenge least year, and you are the reason I kept going for the whole month.  I wanted to share Bradley's story and you let me know that his was a story worth sharing.  Because you believed in me last year, I jumped into the blog Challenge again this year, so thanks!  It's emotional, it's difficult, it's cathartic to share Bradley's story and let the world know that we're okay, that we're better than okay - maybe because of that extra chromosome!  God Bless this Team and we can't wait to hug you all on Saturday, and send special thoughts to everyone else who will be thinking about us as we walk!  It's going to be another really great year!  The only down-sides are those that can't make it, and a new venue means no amazing Japanese lunch like every other year.  Oh well!  We will prevail!  ;-)  Apparently, this year it is an Oktoberfest and that means there will be beer, that has to be a bonus for some right?  :-)  HAHA!!!

Be well and have a great night all!

Following the Research

About mid-year we got word through the research grapevine that scientists had figured out how to turn off the extra Chromosome thereby turning off Down syndrome. When I read this research I saw key facts, some others did too, some others triggered on key emotions. Though the facts are out there and the potential is incredible, the truth of what science could be capable of is a long way off. I want to believe that it could happen in my son's lifetime, I really do. But before you condemn me for wanting to change my son, let's talk about that research.

Scientist have created an abnormal gene and chromosome anomaly in mice. Yes those furry little white mice almost everyone is willing to cuddle.  Anyway, Down syndrome is not a mouse genetic disorder. In mouse speak that means it doesn't exist, but scientists have found a way to replicate it in mice to further research in humans. Let's discuss that part another day. So what did science do? Scientists have determined a way to turn off the extra chromosome in mice. Well, yeah!

This was the news that started a Hurricane of emotion as both sides of a debate no one thought they'd ever be arguing out loud took wing.  The ethical debate, the eugenics debate, and everything in between seemed to come to head all at once.  You see we're already fighting countries like New Zealand and Belgium to merely protect these extra chromosome kids...their laws and practices are frightening and make me wonder if I would ever take my son to either place to visit...I don't seem them as warm and welcoming.   We're talking about countries with lawsuits against doctors because the parents birthed a Down syndrome child and wanted millions from the government to make up for it; I wish I were making this up.  We're talking about countries that want laws in place to destroy a child upon the delivery and the realization that the child has Down syndrome.  Again, not making it up.  So then throw into the mix this sudden question of what would you do if you could suddenly turn off your child's extra chromosome?  Chaos and fear.

The debates are heated, people are very emotional about this idea.  They should be, you're talking about advocates for those that may not be able to advocate for themselves.  You're talking about people.  But sometimes putting the cart before the horse can have dire consequences, sometimes you have to step back and look at the truth in the science before you plan an attack.

They turned off a chromosome.  In a mouse.  In a mouse that didn't naturally create an extra chromosome, and science turned it off.  There is a giant leap between mouse and human, there is a giant leap between what we can and what we might be able to do.  But the key to this research was this: only at conception.  They could only turn it off at conception.  What the rest get is the potential for drug therapies that might help improve cognitive ability in the future.  Maybe.  Maybe it will help with short term memory, help with a person being able to better live on his or her own, better able to keep up in a fast paced world.  Maybe become as jaded as the rest of us.

It's that maybe stuff that scares folks the most I think.  That maybe if the one we love understands more and handles more they will lose that spark in them that is so pure.  But is it right for me to decide that Bradley shouldn't be smarter, and more independent because he might suffer the mood swings that my other two kids suffer?

Here's the thing.  Genetic testing is going to eradicate Down syndrome...and a lot of other syndromes with it. Parents are going to know at 12 weeks whether they are carrying a child with Down syndrome, at 12 weeks, a lot of us haven't told anyone yet...at 12 weeks...things just happen.  There is less guilt to abort a child at 12 weeks because there are women who spontaneously suffer through the loss of a fetus at 12 weeks...and up...and often no one ever knows why.  Perhaps that child had a chromosomal defect that was not viable...perhaps.  But doesn't that make the ones that are viable, the ones that are born and come out to face a harsh word that much more important, more special?  When you think about what it took for a child to survive a pregnancy with an extra chromosome, perhaps we should be delving into who they are and how they managed to survive.  The very fact that these babies survive and are born tells you something: that God wants them here...or if it makes you happier, that science is not opposed to their place here.

I don't know what would happen if scientists could turn off the extra chromosome...if they truly can do that it would happen before a woman knows she's pregnant so by that she would never know if her child had Down syndrome or not.  So in theory no more babies with Down syndrome would be aborted because no more babies are being born with Down syndrome.   But scientists are saying that they can't turn it all the way off.  Interesting.  What do you do then?  Are you willing to take a baby that has a little bit of Down syndrome?  Could that ever really happen?  Would it be more likely to have a baby with Down syndrome that has a stronger cognitive development, perhaps less likely to develop so many of the health issues that our children face.  If you can help develop the digestive system better and wipe out Leukemia all together, I'm in.
I've said it before, and I stand by it now.  I'm waiting for more answers.  I don't know what kind of effect this idea or the possible drug therapies could have for Bradley.  But I know this, Bradley is who he is.  Who he is going to be is still going to carry this spark that he has inside of him.  Improving his brain function, improving his health - those are hard to argue against.  Do I think he'll acquire more attitude and independence?  Well, let's hope so.  My typically developing girls get bullied, and I am sure that Bradley will feel some of the nasty effects of it as he gets older and gets into school too.  We are valiantly trying to teach the girls how to protect themselves, how to respond with grace, how to respond with strength - and these are difficult lessons that they are learning.  But the girls are holding their own, I am so proud of them.  Do I wish I could make sure that Bradley has the same success?  You bet I do...but I worry.  I wouldn't be opposed to him having the strength, the presence of self and mind to handle the bullies that might, and probably will, come his way...and when the time comes he might do just as well as the girls, but we can only wait and see.

I fully admit this now - I want my cake and I want to eat it too.  I want all the positives from this research with none of the bad.  I want to skip all the way to the end where there is a rainbow waiting and sunshine and maybe even a pot of gold...I want it all, I want it like that.  That's not what I'll get.  Down the road, I will be weighing for and against this research, this future.  I don't know which side I will come down on, but whatever it is...I can only pray it will come down to the most positive life and future that Bradley can have.  Bradley has a beautiful soul, it's unbreakable, it's perfect.  And it's not going to change.  And having an extra chromosome is not what gives him this soul...it's just him.  I say that because I can tell you without a shadow of doubt that my Madison has a beautiful soul as well, and it is perfect.  She has a depth for compassion that is deeper than oceans.  Dip into her soul and you will come out feeling refreshed and renewed.  My Sydney has a beautiful soul, and it is perfect.  Sydney will carry you with her humor, her logic, the way she looks at the world - she will do that for you even when you feel like you can't take another step, she will do that for you - all you have to do is listen.  Bradley's extra chromosome is merely a magnet that draws people to him, a magnet that draws people away from what they fear into a little boy's warm blue eyes and sweet smile.  All that is who he is, he is here for a reason, and maybe it's to try to teach me to be a better person, I don't know.  But everyday, I sit at his knee and absorb what ever new lesson he has to teach me today.

I don't know what the future will hold, no one does.  When the time comes we can only hope to be guided by love AND truth...not lost on the path to one and not the other.  Until then, we'll keep up on our science and the research...yet another Challenge for us.  Thanks for stopping in, putting Day 16 of the "31 for 21: Challenge" to rest.  Have a great night!