Halloween Day Four - The Big One!

 October 31, 2020

So bittersweet.  Not only is it the last day of Down Syndrome Awareness month, but it is also a sort of weird little Halloween.  As is the usual now, the girls had their own plans and path to take today, so it was mostly Eric, Bradley, and I. 

The morning started with Eric, Madison and I heading to the library and waiting in line a hundred minutes to get in and vote in person.  This is the very first election that Madison was old enough to vote in, so I told her we would wait in line and we would do it together so she would see how important it is to vote.  So we got our “I Voted” stickers and came back home.  

After that, we were on our own.  While the girls worked on cleaning rooms and homework before their Halloween Plans, Eric and I took Bradley to lunch at Johnny Rockets so we could all say Hi to some of our favorite people.  One yummy hotdog for Bradley later, and we came back home and got a look at the girls in their Halloween Costumes before they took off for the evening.  

Sydney left first.  She wasn’t planning to go anywhere for Halloween, but at the last minute decided to head out - so she wore her Baymax onesie. 

This is Bradley’s favorite costume, and she is lucky he was sidetracked by his movie or he would have been trying to crawl inside it with her.  HAHA!!  

Then Madison headed out with her cousin for a party tonight.  She chose Rei from Star Wars, complete with Light Saber.  😂😂.  This Kid!  

Pretty cool costume overall.  She was very happy with it that’s for sure.  

That left just the three of us and the animals for the evening.  I’ve been keeping track of the neighborhoods that were listing potential Trick or Treating for the night on a Page on Facebook I follow.  After three days of dressing up for Halloween for therapy, Bradley was primed and ready for Halloween and Trick or Treating.  With all the COVID restrictions, I wasn’t sure he would get too.  Seeing that so many places were spread out, we tried the area closest to us, but there were only dark houses, so we decided to drive over to see if we could see our old neighbors like we do every year. But when we got there, their house was locked up tight and dark.  Although it is always tempting to knock and say Hi, it is really hard on Bradley when we don’t continue down the street.  So we drove the area we would normally go walking down, and though there were a few places there was nowhere to park.  So I knew of one more area that might be a possibility.  In terms of huge participants?  Not really.  But for Bradley’s needs, it was doable.    

Turns out the only tradition we kept tonight was Mom and Dad taking Bradley Trick or Treating for a little while.  We walked him in a Big U as we worked around a couple streets and then back to the Van.  Bradley was so great.  He walked like a big boy between Eric and I, carrying his orange Winnie the Pooh pumpkin in his left hand while he held tight to my hand.  I think I might have been carrying most of the weight, but that’s all right...it started to get surprisingly heavy.  There weren’t a lot of houses with lights on and treats out, but the ones that were participating really made up for their neighbors that didn’t.

The second to last house we went to had a bunch of scary decorations, lights and sounds - and you had to walk around a corner to get to the table they set out on their patio area; and it as intended to be spooky and scary, they did good because it was.  Bradley got to the first set of three sets of Tombstone decorations with red glowing eyes on them and said very loudly, “NO!”  HAHA...  We said okay, turned him right around and walked him away from the house.  After the next house, he pulled his hood down and he handed his bucket to Dad.  The timing was perfect, we could see the Van at that point and we thought there was one more house between us and the van, but it actually was just decorated and no treats.  Which was just fine with Bradley, he was already trying to figure out how to strip out of his shoes and his costume.  😂😁

  

Anyway, for the last day to celebrate Halloween, he went super creative as a Stick Figure.  😂. This is one of my all time favorite costumes.  He wore it last year, but we got cut short because of the fires and the smoke in the air; so I decided, might as well get another year out of it.  Bradley grows slow, he can do that.  And yes, this really is him.  

So in the end, Bradley had a full bucket, he practiced saying Trick or Treat and lots of Thank you’s and Byes.  And then towards the end of our night, Bradley started trying to say Happy Halloween.  He would sort of say Happy, and then Halloween would come out as “Howl-oh-weeeeeN!”  And he was so proud of his himself, maybe because Mom and Dad were pretty excited by his efforts. 

We got back home about 8 and set him up with meds and jammies...and then Bradley was down for the count.  We’ve had one little nightmare - probably that house he said No too, but he seems settled now, so we’ll see.  Halloween is a lot of fun, but it is a lot for any kid to process and vent off later...Bradley just needs a little more time to process and vent and settle that over stimulation that happens.  Over-all, the night was a lot better than we feared it would be, the people that were out were super nice, and there were no crowds...allowing for the treat givers to talk to us from afar and really enjoy Bradley’s costume.  And it let us see how a relatively mid-size town still wants to come together and make something a little better for the kids in an otherwise really difficult year.  The efforts to make it safe were appreciated, we still have to be careful with Bradley any year, but it was a little easier to be careful with him this year.  So bonus for us.  

Our Stick Figure is sleeping, Baymax has made her way home already, and Rei is out fighting the Empire for a while longer.  Not sure if that young Jedi will be home before her mom goes off to bed or not.  

Life with Bradley is a walk uphill for sure, but we always seem to find the best views and run into some of the best people that humanity has to offer.  There is no glamour on this road, just a lot of twists and turns.  Sometimes we come around a corner and we find a cliff we have to work around, or we might find the most beautiful image that recharges you to your very soul.  At the end of the day, it doesn’t matter what’s around the corner, all that matters is the feel of that little hand clinging to mine and my knowing that he loves me and trusts me to help him navigate the road ahead no matter what comes.  

Down syndrome Awareness month might be coming to an end; but the truth is, we live it everyday.  This day is no different than the next because each is built on the life we have with Bradley.  And up or down (yeah, pun is kind of intended here), it is a great life.  What he gives us, what we give him, what we create as a family...there is nothing better than that.  One of the greatest gifts is looking into the eyes of your children and seeing your Blessings unfold.  God has Blessed our Family with three amazing kids And I am thankful for all three of them every single day.  Thank you all so much for walking on this journey with me; again, for the last 31 days.  Your support is so appreciated and I am grateful for each of you!  

Happy HalloweeeeN my sweet friends!  

Halloween Day Three

 October 30, 2020

It’s Friday!  Last Friday of the month and last Friday before Halloween!  And just like every Friday, we took Bradley to therapy.  But this Friday was the last in a week of Halloween fun.  So for his third costume of the week - because come on, why not? - we took a little baseball player; specifically a SD Padres Hosmer baseball player to therapy!  

We didn’t get any new crafts or candy, but we did manage to tackle soup and after choking up a little, we did get some down.  Soup has been really hard for Bradley.  He isn’t able to handle the separation of solid from the liquid, and if the liquid is not thick enough, he can’t control how quickly it goes down or how quickly it slides out of his mouth.  He was working with chicken noodle soup and his first attempts were to put the spoon upside down, and when that didn’t work and he was given maximum assistant he tried to take the noodles out to eat by using his fingers.  😂😂. Then, the broth was put into a Dixie cup and his first attempt was to throw it back like a shot, only without the dexterity and ability to down it like a Sailor on shore leave.  Nope, his was to choke it out kind of like how his mom handled shots in College (though she actually doesn’t do much better now than she did then).  😂😂  A second attempt and he drank the broth much better that time. 

Progress!  

With better attempts and successes with feeding we are also getting more language.  During his afternoon therapy, Bradley decided to take all of his Go-Go Smart cars, turn them on and then drop them through his tunnel into his container.  Here’s the language part.  As the Go-Go Smart cars start making noise and saying words, so did Bradley.  We heard: Woo-hoo, Taxi, Convertible, Safe Bus, watch it...and a bunch of other words we haven’t heard before.  Am I little miffed that I get the noise and chaos from the cars on the weekends without the words?  Nahhhh, maybe a little. Sigh...  But the good thing is, I could hear the words coming from the living room and for now that will do.  

Similar to what I told his Speech therapist this morning: we don’t hear “I Hear” and “I See” at home yet.  But we took about a month of working on “I Want” at therapy before we finally got to hear “I want” at home.  So give him a few more weeks of working in therapy and I fully expect to start hearing them added to his home voice. We constantly add phrases in context, “Can I have the car” and my favorite “Can I have a cookie?”  I foresee that “Can I have a cookie” will be the next successful phrase at home. Followed by “I see a cookie.”  I guess you can see that for right now, cookie is a great language motivator for Bradley.  He likes to see them and have them...yep, he’s just like every other kid!  

Not too bad a day!  He got to wear yet another costume, did great in therapy this morning and this afternoon, his School Speech therapy session was yesterday because she had a meeting today, so that meant no Zooms today at all.  It doesn’t really matter that I just got a phone call ten minutes ago at 6:30pm, reminding me that there would be no distance learning classes today... so glad I got that information in a timely manner.  Yeah, I’m not concerned by the return to school plan at all.  Sigh!!

Happy Friday Night my friends!  Now off to wrangle some dinner into the family!  

He was down ready to Catch my pitch! 

Always gonna be his favorite Guy!

Things to think about! 

Shout out to Eric Hosmer!  Loved you in KC, still love you in my hometown SD! 

Full Schedules Make Fast Months~

 October 29, 2020

Sydney was telling me yesterday that October has felt like her first real month back to school.  She was surprised by that and I can't blame her.  Until October, we really have not been out anywhere but to Bradley's Therapy appointments.  So after months of just being at home, when the school year started it was still part of the months being home and certainly didn't feel like anything different and definitely nothing familiar.  I think that this year, we are all looking for something familiar to help make us feel a little more in control of things.  I have two kids who each have a different level of anxiety with different triggers.  One is an adult according to the legal books, but still very much a kid inside her head. Still, I give her the room to work her way through her anxieties...or has often been the case, not work through them.  Sydney I try to help her a little more.  Or should I say, he gets a little more unsolicited help. Madison either comes to me - or her emotional explosion requires some immediate attention and we go to her.  

Working things through with Sydney I pointed out that it feels more familiar because she is back to playing volleyball every week.  Every year she's started school, she is usually in the middle of High School Volleyball season.  School started this year and it has only been in the last few weeks during October that there has been Volleyball.  By now, we should have had a month of pink jerseys for Breast Cancer awareness, and crazy socks for Down Syndrome Awareness.  There should have been mid-terms, football games on Friday nights, loads of hours volunteering in the community with mom, and without...usually with both girls, but sometimes only one.  We would be getting ready to order her Varsity school jacket, but waiting for volleyball season to end so that all the patches for athletics, community service, and for her academics would be ready to go on together.  

But life is taking a different route and though we are used to the Road Less Traveled, this less traveled road is quite crowded as we maneuver around those that are inexperienced in taking a difficult path, trying to help them along and at the same time, ever forging our path ahead.  

We still aren't in school, the kids are still working from home.  Eric is still not to the Phase that sends him back to work.  We are in the rhythm of Bradley's therapies..  We are actually out a little more, and that is the catalyst for Sydney's sudden feeling that she is really back in school.  She has Volleyball, and now she is going to doctor appointments here in town and all the way into LA, and a couple days a week she is also going to Physical Therapy.  These make for surprisingly busy days.  Busy enough that though we have decided to get her jacket made now, we can't seem to find the time between her schedule and the shop's shortened available time to get her in there to choose and plan her jacket.  I'm also looking into trying to get her Class ring ordered early.  I hate that they wait to give them information until their Senior year, I feel like now more than ever, it is reasonable and an act of kindness to open that door for her to have something special out of a very weird and discordant year.  

We aren't sure that she'll even get a Volleyball Season for High School or for Club, so right now she is working hard for a lot of potential, and a lot of maybes.  Right now, Mom and Dad are simply sitting back and slightly holding our collective breaths while knowing that the odds are not in her favor.  Only time will tell, so apparently the Password for this year is "Patience." My worst trait come to life!  

Club Practice tonight and then waiting for the weekend to hear who makes the Final Varsity Volleyball Roster for High School and whether she will be on it or not, we feel like she will be...but, politics always rise up to play a role and unpredictable is 2020 - so....  Perfect weekend for Halloween...scary to wait!  HAHA..  

Happy Thursday All!  Anybody else finding October is very full, and almost feels like real life or is it just our house? 

Halloween Day Two

 October 28, 2020

Another Halloween Dress Up day for Bradley at Therapy!

Today he was a Greaser from the 50’s...a return to a simpler time and a shoutout to my love of the movie “American Graffiti” and my belief that that was a simpler time.  It wasn’t, we were in between wars, kids were still grappling with the same problems but just on a different platform.  The idea of sacrifice was still fresh and the taste of freedom still very sweet...so simpler I guess in the idea of clearer understanding of where we had been, where we feared we were going, and the sheer relief that we made it through and were living better lives because of it.  When I say “we” I of course mean Americans back then...I was not born at that time thank you very much.  HAHA...  

So for his second Halloween costume this year, Bradley wore a white t-shirt, blue jeans with big cuffs, a varsity jacket, and I spiked his hair.  First problem, Bradley doesn’t like anyone to touch his head and he is not partial to plain white t-shirts...but today, he was good with the shirt and freaked out about the pants.  Hmmm...  didn’t even mind me messing with his head too much either....so weird.  Anyway, two weeks ago Dad tried to cut Bradley’s hair, and after I asked him to leave the top longer for my planned Halloween costume, he tried too...but Bradley is not a fan of haircuts and moved quite a bit.  So his hair is really short, and though we had adorable baby spikes, not sure you can really see them in pictures.  Furthermore, he watched the movie in the car on the way to therapy, so there is a decided line that marks headphone marks across his head.  Perhaps this was actually beneficial, helps to see the spiked hair I think.  He surprised us by wearing his tennis shoes ll the way over there and through the whole time at Therapy, though there might have been some sock time during OT...but he came out in shoes...  they lasted five minutes in the car on the way home...but for purposes of a successful Halloween jaunt...we were good.  HAHA..   

So without further ado, here is the finished product for the Wednesday portion of Halloween!  

So super cute right?!  HAHA..  

During OT this week they worked on some crafts and I was pleased to hear that some of this school goals were still in good working order and even surprised when he was willing to do a few other things as well.  

Bradley as a Ghost.  He had to use tweezers to pick up the cotton balls and then put them on his ghost.  He has been practicing this skill with different variations of size and difficulty the last few years.  Turns out I don’t have small tongs or easy tweezers and in a way did not work to maintain this skill he had mastered at school.  I am very happy he still has mastery of this skill and that given a two examples, he could proceed through he project all by himself.  That I ended up with the cutest ghost ever, well that is a perk for mom.  

This is the one that impresses me the most.  From even when Bradley was super tiny and his OT would come to the house, he has never, ever enjoyed stringing beads.  His hatred would reach an epic level of complete meltdown and refusal to return to work, so we just chose to turn our attentions and efforts to other skills entirely.  I was surprised and optimistic when OT was having some success with stringing beads in the last couple of weeks.  When he came home with a spider I was shocked, and so happy.  By taking away all the pressure to strong beads, he has decided it is okay to string beads.  Or perhaps his success at improving the dexterity needed to use tongs and tweezers has now created an opportunity for Bead stringing to be a successful activity and one that is not nearly as frustrating as it once was.  Luckily, I am pretty certain that the girls never brought home this kind of crafty spider, so I am relieved that I can say I LOVE this little crafty spider the most!  💛💙

So in the grand scheme of things, Bradley had a really good day and has been working so hard in his therapies, I couldn’t be prouder of him.  Even with the Potty training debacles that befall us, everything else is improving so I just have to push those failures to the side and know that someday, one day, maybe... he will fin success there too.  For now, we remain thrilled to have him.  And being a part of the learning curve is actually pretty rewarding.  I don’t know how or why, but even at home we are getting leaps and bounds.  On Tuesday, he chose to color and we got this lovely masterpiece shown below.  This from a kid that usually fights hard about coloring; not only did Bradley ask to color, but he was determined to be thorough and cover the entire page, even making attempts to stay within the lines of the page...except that one area where he realized that crayons will leave marks on the table too...  haha...  Hey, I always knew that some marks were not meant to be replaced and after seventeen years, this old an beautiful table shows the grace of three kids learning as they grew.  🥰

It’s on our refrigerator, because now, Bradley understands how important that is, and how proud of it he becomes.  He’ll have to work pretty hard to create the next masterpiece to replace this for sure...this is fantastic!  ❤️

The Woes of Training!

 October 27, 2020

So potty training with Bradley might be the bane of my very existence.  I am not sure if Bradley and I are ever going to get there...after today, I am thinking that it is highly unlikely...like if we were in Vegas, I would be taking the potty winning odds because I am thinking they are like 100 to 1 against me.  Does that count as betting against myself?  

We started today early with OT, 8:15.  Bradley thinks that is early, I do too - which shows how far we’ve fallen from the mountain top as we used to get on the bus at 7:15.  Anyway, with some struggles and a busy token board, Bradley made ten successful cuts with adaptive scissors across 1/4 inch strips of paper.  Considering Bradley feels about cutting much as he feels about Zoom lessons, I think we can all appreciate the work involved and the triumph in general...he was on Zoom and cutting...he truly felt his day had peaked.  He might have been right. 

He was less than thrilled by the fifteen minute break and return to Zoom to attend class.  Not as successful a token board, as his frustration boiled over to hitting his head with his hand in order to draw mom in close enough to get what he really wanted, which was to pull as much of my hair as possible.  All because the teacher asked him to count.  CURSES!  How dare you?  So Dad calmed him down with some easy ways to get a few tokens and what do you know, he spent the rest of that lesson counting with me...his teacher had moved on, thank goodness.  I just love taking my son off mute so everyone can enjoy his yelling and screeching... sigh...  

Towards the end, I thought he had filled his diaper...the signs were there (green air all around), and then his Chrome Book battery died.  I should put my glasses on when I turn it on in the morning, totally misread the amount of battery power remaining.  So that died, and it was perfect for diaper changing...only the diaper had nothing.  Holy Smokes!  We all know what is coming!  So I asked if he wanted to go potty and Bradley said “Yes.”  And so it began again.  

Bradley sat on the potty, even watched a potty song on my phone.  I feared he’d pee on my phone - but no phones were christened today, thank goodness.  He didn’t poop, but he peed a tiny bit.  

Back to his room, and he started going through his closet looking for his big boy underpants so that he could match the baby on the video.  What followed was probably the BEST part of the day.  Bradley was incredibly intrigued by the different underpants available to him, and even more so by the interesting change in fit that he enjoyed; truly enjoyed, compared to a pull-up.  He tried on five different pairs before he settled on one, and each required a considerable amount of booty shaking and mirror dancing.  Truly a sight to behold.  Got him settled down and started the timer.  

Within ten minutes, we were changed out - he soaked through.  Nothing in the potty, but little stain in his pants...

Fifteen minutes - tiny bit of pee.  But this time, when I put him on the potty, I noticed he had a bit more stain, so I made him sit and wait, and then wait some more.  Eureka!  Splashdown with a sizable donation to the sewage system.  We even sat a bit more to make sure, but he told me Done, twice.  So I took him for his word.  Too bad he lies.  

We get to his room, I want to clean his end, before putting him in something new and dry. While I reach for a wipe, he does it.  I look at the wipes, then look back at him and am stunned by the pile on the rug below him.  And I know how this happens, but it didn’t stop me from saying out loud, “You just went, how did this happen?”  A lot of clean up later...and I tell him no movie til he finishes getting his tokens for his board. 

He went three more times, a bit of trickle the first time, but significant bladder emptying the next two.  He got his movie to enjoy for a little over an hour until therapy.  It was a long morning.  

Fast forward to therapy.  He starts to grunt, so we hurry in, and he goes on the potty.  Nothing epic, but a little bit.  Obviously, his stomach and digestive trac is now working decidedly against him.  He needs a new pull up so we hustle back to his room to get one (I also do not know why I don’t keep some in the bathroom - the bathroom finishing and reorganizing is still a work in progress - pull ups someday, I promise!).  He’s standing on the bare floor because his rug is in the washer.  As I tell him to lift his leg, he drops a prize, again.  Not as much - but enough to make me cringe and gag at the same time.  Wipes! Turn back, he’s dribbling pee now.  GOD HELP ME!  My patience is being tethered to me by sheer force of will at this point.  So I get him up on the table, stepping around the mess, get him cleaned up and covered up.  Then I use other wipes to clean up the mess.  I send him back to therapy and return to his room with Sanitizing wipes to complete that little science project.  

I text my Partner in Crime (Eric - who had to run to work for about an hour today) and tell him that I am considering quitting the potty training portion of my day job.  He marks my text with a HAHA.  He thinks I am kidding.  I don’t think I am.  

He gets back and as soon as he walks in, Bradley meets him in the hallway, side tracked from letting me know that he needs another diaper.  So we go back together the three of us.  We get Bradley cleaned up, and a new pull-up.  Only Bradley immediately pees and fills that one up.  So Eric changes him again.  As soon as Eric pulls his hand away, Bradley pulls the pull-up away from his belly and watches himself pee in this one too.  He has very little left, so it is a mere dribbling - so kid kept that diaper on.  But for Heaven’s Sake!  Really?!  

Good grief!  

I don’t know if we are at the pivotable moment or not.  I’ve been trying to find the positive that he is now interested in what is happening down there; like maybe if he is interested his prowess with the potty will suddenly click in place.  But after today, I am more inclined to be thinking that there are many messes ahead of us, planned events to be as disruptive as possible.  Respond don’t react.  Yeah sure, let’s see how the experts do when their kid decides to pee right in front of them - potentially with purpose.  Or manages to control a poop drop?  He starts dong that with purpose - and it will be straight big boy pants from now on.  Mess and all.  

Yet again...  Bradley 1 Mom 0

I think if I were a drinker, I’d be pouring one tonight.  But since I’m not...guess I’ll make my tea stronger or be wild and have a late afternoon Fizz!  Sigh!!!  

Halloween and Cheesy Movies

 October 26, 2020

A historic day, and yes I called my girls in to watch the latest Justice be sworn in to the Supreme Court.  Such moments should be witnessed, and I think young enough that they will remember where they were and who they were with when it happened.  Given that most momentous occasions have a tendency to be such negative and traumatic events...this was just momentous.  

From History to cheesy Lifetime movies.  

Having decided that News isn’t conducive to my good health or good mood, I went in search of something to play in the background while I wrote today’s Blog and tried to ignore the fact that my Junior is busy trying out for the High School Varsity Volleyball team.  

So I stopped at the Lifetime Channel and watched the end of the cheesiest Christmas movie ever, which made me miss the Hallmark Christmas movies.  But I have standards, so I refrained form checking out the Hallmark Christmas movie channel and stopped at Lifetime because “Christmas With the Kranks” is starting.  Christmas?  I know, I know.  What in the world am I thinking?  Yeah I don’t know, nothing else looked all that good, and this moving makes me laugh every time...even right before Halloween.  I will say that the book was even funnier than the movie, but that’s all right - distraction is key!  And why is it that the Lifetime channel thinks that we can all follow along easily and not care that they are chopping the movie to bits?  Considering they have already chopped some of the funny parts in the movie, I’m wondering if it’s worth it.  A disappointing distraction it would seem.  

So my kiddo is super nervous, and so is her mom.  So while Dad took her, I am here hanging out with Bradley; who is already asleep, which makes him the best and worst Monday night date ever.  Him sleeping ever, is truly the best so I will forgive him the slight to my entertaining personality by sleeping.  

Of course, he also chose to sleep the twenty minutes before and first twenty five minutes of therapy today too.  He made it through the first two therapies awake, but that could be because he wore his Ironman costume and practiced Trick or Treating through the office, which he truly enjoyed. The nice part of having therapy three days a week - he gets to wear a different costume for each day.  Today, Ironman. Wednesday I have a 50’s Greaser planned, and Friday he’s going to be a baseball player.  Friday is usually working out to be jersey day, so - seems the best plan.  And if I can’t get him to wear a white t-shirt or his jacket...not sure how the Wednesday costume will work.  His last haircut turned into a buzz cut because someone kept moving...so not sure he has enough hair to grease to stand up...but we’ll try all the same.  Worst case, I’ll put him in brown pants and his Baby Yoda sweatshirt, which would be just as cute.  

And lucky for him, I had a telemedicine appointment this morning and so he didn’t have to jump onto his classroom.  But I meant to put him on the very last session of the day - but someone might have completely forgotten about that last session.  Turns out he really needed a good lunch and a nap before his Behavior Therapy this afternoon.  Once he woke up, he had a great session.  

Then tonight, Bradley decided to do his now nightly tradition of walking into the dark hallway and looking inside my room, we think looking at the lights on the computer blinking.  It’s weird and we really don’t get it, but he has been doing this every night for ten days now.  He just sits there, doesn’t make a sound, until we come get him and start the bedtime routine. Tonight, things were a little different.  Madison walked out of her room and he surprised her by yelling: “Ahhhhh” to which she answered with a scream, because he scared the spit out of her.  It was an epic scare!  I chuckle every time I remember it. And I have been chuckling off and on all night!  :-)  

So all in all, it was a pretty good day.  

SO anyway, my next Christmas movie probably won’t be until after Nov 1st, but one has to wonder if; based on the past seven months, perhaps some funny Christmas movies are not completely out of the question and perhaps should be encouraged.  If I didn’t want to actually pay attention to what I am writing and maybe spell some things correctly - perhaps have it make sense - I would be listening to Downton Abby.  But I do that and I find that I end up actually watching and not just listening, and well...I finish the blog when the episode is done and end up getting to sleep way too late.  HAHA...  

Well, Bradley is asleep next to me on the couch, so I think it’s time to take little man in and put him to bed, it’s been a pretty busy and eventful day.  As for me, just another ten minutes til the tryouts are over...not sure when we’ll know from there, but one anxiety filled moment at a time.  ;-)  

Have a great night all!  

Sunday Play Time

 October 25, 2020

Madison has worked Friday night, Saturday night, and Sunday afternoon.  She went to work before Bradley finished his therapy on Friday, and then she had her own homework and late start to her day yesterday, and then she was up and getting ready when Bradley got up today and was out the door before he really saw her.  So in truth, it is like Bradley hasn’t seen her in three days. 

To say he has missed her is an understatement.  After we had dinner tonight, he has been following her all over the house.  She came in and sat with him for a few minutes in his spot on the couch, the two of them sitting there giggling about who knows what - and honestly, who cares.  He was in a cross between full belly laughs and extreme giggles.  So was she honestly.

She tried to tell him to stay because she had homework to do...so he just followed her into her room.  She brought him back again.  And he followed her again...and she brought him back.  After she tried a third time I told her to just sit with him a little while.  It was already 6:20 and by 7:30, he would be asleep or else very close.  I said to her “Obviously, this little boy has missed you very much and really needs to spend some time one-on-one with you.  If you haven’t got a lot of homework, could you give him twenty minutes or so...in an hour he’ll be asleep, but he won’t be playing that long.”  

So she sat with him on the couch again, and they started playing, and he started trying to copy everything she said...even the nonsense she was delivering because it made him laugh.  At one point, she moved to the side of him and starting playing hide and seek.  Bradley would cover his eyes and try to count to five.  I say try because he knows how to count to five, he just was laughing so hard he couldn’t seem to remember all the numbers in all the right order.  

So then Madison started hiding a little farther away, which led to chaos.  So she hid in the corner of the living room with a blanket over her head.  He found her because he is a little bit of a cheater and though his hands started by covering his eyes, he did manage to fling his hands open so that he could see her as he was counting and laughing.  After that, he wanted to have the blanket over his head.  And I am not even sure what we were playing after that.  He would stand but he tv, counting “1,2,3 Go” then would run towards her, flapping his hand under the blanket until he got close to her and would turn around and drop butt first into her lap.  Good grief!  What a super funny, and super cute little boy!  

Here are a couple little videos of Madison and Bradley playtime tonight.  Maybe, sometimes my videos load on here and sometimes they don’t - so now you know why this was a description of playtime on the sad chance that my videos don’t load correctly.  :-)

Either way, Bradley got what he needed when his sister pushed her work back a little so that he could have her undivided attention for just a few minutes.  What an exciting push to wear him out so that he was down for sleep so fast.  Sadly, he is waking now and crying in his sleep/awake state.  This is the second time he has done this this week and I am hoping not a habit that he is starting to get.  There is not much worse than a little boy sleeping soundly only to wake up crying so softly you almost can’t hear him.  But hopefully, he will get settled again quickly enough and I hope with better dreams this time around.  Sometimes the excitement and fun with a favorite sister is just a little too much for him.  

He’s back to sleep for now, so we’ll see how it goes from here and for how long.  HAHA!  

Happy Sunday All! 

Making Necessary Changes

 October 24, 2020

The family as a whole is working on our health.  I had some tough days in the summer of 2019.  I took the girls to Orlando for volleyball, and when I came home I went right back into caring for Bradley as usual, and as was his new habit, he was still not sleeping through the night.  He had been, but in February, he suddenly started to get up throughout the night, and progressively, he started getting up for longer periods.  It started to weigh on me.  There are only so many middle of the nights, awake and sitting with my son and feeling that this is just the beginning of a lifetime of sleepless nights from here on out; before things start to get heavy.  It’s sometimes hard to love someone so much and yet accept that there are some hard times ahead.  I knew I was never not going to sit up with him; for however long, I just wondered how the days were going to be good when my spirit was being so battered.  Could they stay good?  

I was exhausted but trying to remain upbeat; after all, I have three amazing kids and one fantastic husband that I adore.  So feeling bummed with that just seemed ridiculous to my very logical brain.  My visit for my medication renewal, had my doc suggesting that I try to sleep once Bradley went to school.  So I guess I looked at it like I was taking the night shift, and then sleeping during my ‘night’ while he was at school.  And this worked for awhile, it seemed I would kind of catch up and then the last couple days of the week I could catch up around the house.  But then it was like I didn’t have the energy to catch up around the house anymore.  I didn’t know I wasn’t eating well until Halloween, the quick disappearance of my favorite candy caught my attention.  So I stopped.  But a glance at the scale was frightening.  So I started some research, what could I do. I read a lot of articles and books, made some changes right away and some to implement over time. 

And at the same time my daughter was struggling with her skin.  We tried every over the counter skincare, she would give it for almost two months...no dice.  Try something else for the next two months... no dice.  Do some more research and took her to an esthetician who gave me more information...and I did more research because I was quite sure I couldn’t afford the monthly suggestion or the skincare line she was telling me to try.  It was frustrating and heartbreaking.  My own troubles were bubbling over inside of me and at the same time hers were bubbling over out of her and I could feel her distress on a level that I may not have recognized in other times.  Plenty of times, her tears fell from my eyes long after I had dropped her off at school.  

So we made some changes.  I know that skin and gut are connected, so my research led me to where I might have a chance to offer solutions for both: for her, for me, and for Eric.  I wanted more control of how I felt.  We started with skincare that was helpful pretty quickly and no longer had all the chemicals that were treating her skin so harshly, so I felt better about that.  But she has to take a steroid twice a day - that really takes a toll on her skin.  She also has reflux, so that really takes a toll on her skin too.  I saw the troubles weren’t going to go easily or quickly.  So I brought her to Dermatology to lead the way on that.  But I decided to keep her in better skincare and better nutrition to try to help her as much as I could.  At the same time; I needed to find me again, my smile, my optimism, because I had lost them.

I did a 30 Days to Healthy Living and Beyond Program.  At first I did it by myself, and being something I had to pay for I did not cheat and I did the whole program and I found everything I had been missing.  And so much that I needed.  I felt so much better, and I was changing what I was cooking for dinner and how I was doing it - my family slowly started eating what I was eating and they all started to feel a little better. Enough that Eric wanted to try the program; so I did it with him, I wanted to support him and I since I felt really great, it was an easy choice to make.  A couple months later, the girls and I did it.  

Is it the answer to everything?  Of course not.  But it is an answer for me.  I felt so much better this summer compared to last.  I see the differences in my family and their over all general health.  Skincare is slowly coming around but we still have her Dermatologist offering her help in that area, it requires patience which is not a strong trait for my kid, but it is happening.  My other girl is pleased to have her skin in control, so at least there’s that.  

Sydney is almost at the end of the 75 Hard Challenge. Her desire to excel at volleyball has defined her in the last few years but in amazing ways the last six months.  Her workout has been intense and consistent.  This challenge has her working out twice a day, reading for ten minutes a day, a gallon of water a day and following a set diet.  She chose to follow the 30 Days because she feels better on it.  Monday is Volleyball tryouts with the potential for High School games starting in December.  If the world smiles on us, she might get to play Club ball on November 8th - but truly every step is a baby step forward and strictly a wait and see prospect.  This year; or next, she is ready to keep up the work to win a spot on the floor.  It’s been interesting to watch the desire grow to a belief and become her goal.  

Does Bradley sleep any better at night?  No.  But, it’s okay.  I can’t change it, I can’t change him.  My baby is my baby and whatever issues he has - I have to figure out how to live a life around them and make that life a really good one.  I need my boy happy and healthy, and I need my girls happy and healthy, and I need my Love happy and healthy... in the mix - it would be great if I could find some of that happiness and health for me too.  The work I have put in since January has allowed me to find me again.  I have energy to live, really live in each day, and I find that that really makes me feel better inside...when that happens it just helps you to get up each day and get through your day.  I’m so glad I tried the program and changed everything about how my day begins and how it goes throughout.  Some days are harder than others, but to be fair - I have had Bradley with me 24/7 since March, and there are no nap days.  But every day is not a trudge to get through, it’s just a day.  We are working through Bradley’s sleep issues, and keeping up with all his health issues.  He is my easiest to try better food for the family.  From the first day of my 30 day program; that first clean meal, when I offered him food from my plate, he willingly took plenty of bites.  HAHA...  So in the long run, I think that he is benefitting from a healthier diet as well.  I have a cupboard full of Lemon pudding, and I can’t say for sure that he is off it because he is bored with it, no longer needs that jolt to his tastebuds to catch his attention, he just outgrew the need for it, or maybe eating healthier means he isn’t in need of that sweet/sour like he was.  Heehee...if you could see how this kid mows through cookies, you would probably think like I do - boredom!

Either way.  Things had to change and so we made some changes.  I made changes to how I live and how I work and what I do to help my family.  And I couldn’t be happier with the path I am on.  The work is something I enjoy and I am helping my family live better, so I know I have been Blessed.  Sometimes I even help others along the way and that feels amazing!!  

So life was rough for a bit, but it’s better now.  Life gets better everyday, we just keep putting one foot in front of the other along the way!  

These Kids

October 23, 2020

There have been certain actions in my life as a mom that I have never wavered from.  I strongly believe in the job that I have chosen and I also strongly believe that there is a possibility that I will never truly know how well I have done in my job while I am here.  It has always been my belief that my children are the miracles that God let us him Help create; as such, they should be treated as the miracles they are.  That being said, even miracles get grounded sometimes.  Yes, even when I am angry with them, I still love them dearly, but do expect them to be respectful and all around good kids.  

Madison is our pleaser.  I do think that one of the downsides to letting her do so much modeling and acting in Japan is that she grew up wanting to please everyone.  Being the center of attention was lovely for her, but knowing that other people were relying on her to get their paychecks, mom was pretty intent that she do her part well and as needed in order to make sure that everyone else walked away with a good day’s work and impending payday.  I did have one model tell me that I was being too hard on her and should let her mess around a little bit and be a kid.  Granted she was in the middle of a grassy park playing soccer with the shoot’s staff at the time - so I admit that I was a little confused as to how much more she should be allowed to mess around considering she was busy playing.  To this day, I think of that conversation and how it felt to be told I was too hard on the kid who was busy running around in a rousing soccer game; stopping to eat yet another sweet, before jumping back into the game - all while I stood there listening.  I don’t know, I think she’s turned out pretty great, despite her mean mom letting her play soccer in the park, in Japan, while eating sweets, while I was being hard on her.  Hmmmm....

Sydney is the jokester in the family.  She keeps us on our toes and makes us laugh often with Eri shenanigans.  To this day, she wishes she had not been so shy as a tiny kid and that she had liked strawberries.  You see, at one of Madison’s auditions, the Producer had asked for Sydney to audition too.  They really wanted her, but I told them they could try, but Sydney was really shy and might not do it.  I was right.  In the first attempt, she wouldn’t blow a bubble - even off camera...and in the second attempt - said she hated strawberries and wouldn’t eat any of them.  Now she wishes she could go back and be in commercials with her sister.  She wants to return to Japan to live; or at least visit, because in her head she thinks of Japan as home, and I do think that part of her is hopeful she could restart a small modeling career and have some of the same fun hat Madison had, who knows. Until then, she just keeps us laughing here at home.  But she also has a big heart and a strong sense of who she is and where she wants her life to go.  She wants to please, but it is not as important to her as it is to Madison.  Maybe birth order, maybe childhood events, but these two girls are really different in that sense.  Madison wants to make others happy because it is important to her and that makes her happy.  Sydney does it because it makes her happy to see others happy.  

And then there is Bradley.  Bradley is starting to really come into his personality.  He is likes to get a reaction from people around him, but he doesn’t much care if the reaction is good or bad - he just likes the reaction.  A negative reaction will bring a look of question to his face, like he is trying to dissect the situation to understand what he is seeing.  Getting a reaction that is positive leaves him feeling so very proud of himself.  He gets this huge smile on his face, so much self satisfaction.  Today he wanted his milk in the van, and we decided to give it a try.  I told him to put it in the cup holder when he was done, and when he did, we cheered, and his grin was huge because he was so proud of himself.  So maybe he is a bit of a people pleaser too - except he isn’t trying really hard to please anyone, he is just in the moment trying to comply with a demand put upon him in a way that makes him happy.  When he took another drink and then tossed his cup, we gave him almost no reaction other than to tell him not a good choice...and we got that quiet and curious look back at us, I think he was just flat out shocked that we didn’t give him the reaction he wanted.  At least we are getting better at this!  

At the end of the day, we love the moments when each kid has that smile that lets you know they are proud of themselves.  Our kids want our approval and want us to be proud of them, and we let them know when they do.  But I have always tried very hard to make sure that they find it in themselves to put the work in that will make them feel proud of themselves at the end of the day.  I think if I can help them get to those little moments, to see those everyday triumphs, those surprising lifts in their lives, and be proud of themselves there; then the special moments will be truly special, not because they are life altering, but because they understand the importance of the little moments, to create the framework of a life they can be most proud of themselves living.  

I just need them to be good people.  If they got out into the world and remain the good people they are right now, then I know I have done my job right.  If I can get Bradley potty trained - then I would say I have done my job well.  Anything after that is just special and all those extras are just going to make us so proud of him, of them, of our family, of our life.  

Habits

 October 22, 2020

Sometimes with Bradley it feels like we are trading one habit for another...and most of the habits are one troubling one to the next.  

We wanted Bradley to stop throwing his cups; for obvious reasons, mostly to prevent injury to those around him and then the potential breaking of items.  It wasn’t just his cups, but when we would go to Volleyball tournaments we got to where we had to stop letting him hold his cups and he hated that, but it is so embarrassing when he tosses a cup and it head towards the court.  Yeesh...  So we worked with him to get him to stop throwing his cup, and we would replace with something he could do.  Give mom your cup and you can have ...?  Why is that blank?  Here’s why...what he wants today, he doesn’t want tomorrow.  When I say Bradley is a puzzle, this is part of it.  How can we reward him for not throwing his cup when we offer him his first reward and he isn’t interested...and then the second option and he is not interested, and we go for option 3 and by then he is thirsty again.  What a cycle.

So, we’ve managed to improve this cup throwing thing...except in the car.  He knows in the car I cannot stop him.  And when it is a long trip, he can’t go for a couple hours without something...wait, let me correct that.  I cannot go for two hours and listen to his frustration and tears because he has nothing to drink.  Kid is spoiled for sure, but there is always the underlying need to make sure he gets all the calories he needs per day.  I don’t worry too much, but I do pay close attention to weight.  When his weight goes down one pound ten ounces (currently) - it is just enough for me to pay attention and let the spoiled kid get his milk even though he throws it when he is done with it.  

But keeping it to the car...when he is in his seat and I am driving, I cannot keep him from putting his hand in his mouth.  We don’t know why he does this.  We don’t know if it is a medical - reflux issue and he needs that stimulation to help that, or if he is just bored... I don’t know.  But there are times that he keeps his hand in his mouth all the time.  In the house, I’ll sit next to him and give him his movie, when he puts his hand in his mouth I take it and as soon as he takes his hand out, I give it back.  But I also keep this as much without reaction or comment other than the movement.  Back and forth, back and forth...and God forbid I try to potty train him at the same time.  He is already frustrated that I am trying to prevent him putting his hand in his mouth and then I am asking him to walk to the potty every twenty minutes.  So I have to allow the hand in his mouth when we are trying to get over the potty training hurdle to keep him from melting down about the training and turning it into a control issue more than a training.  I don’t know what’s harder, keeping him from melting down or myself.  HAHA...  

And then there is the teeth grinding.  If only we could determine the need for him to grind we might be able to understand and perhaps replace that behavior too.  Sadly, we have no idea why he does it or if it is also a medical need.  The dentist seems to think that only his six year old molars are in and the others are only baby teeth, so I can only hope that as he loses his baby molars he will no longer need to grind - or rather, he won’t be able to get the stimulation he needs through grinding if there is nothing there to grind...and perhaps when the other molars come through - he will have forgotten about grinding at all.  At least, one can certainly hope!  

I can’t seem to find the right means to entice Bradley to give up the negatives to accept all the positives, mostly since I can’t seem to figure out what those positives could be to encourage him to think that giving up the negatives are worth it.  But we keep trying everyday anyway.  Sometimes we can slow down the hands in the mouth, and that is a great day...I wish he wouldn’t revert back - but for now he does.  Just as I keep trying to find the positive to encourage him to make sitting on the potty a habit that will eventually turn into routine...even if he really can’t tell what his body wants or needs to do...that is still up for debate.  So yeah, he’s a bit of a work in progress, but he’s a cute little work in progress so we just keep trundling along.  

And I leave you with this new thing that he has started to do at night...it’s not a habit yet, but it would be a good one.  As he finally falls into sleep, he turns on his belly and he wraps his arms around his pillow.  He has never agreed to have a lovie or a special blanket...but if he could find comfort in holding his pillow and that helps him fall asleep...I would love for that to become a habit!  See what I mean, that would be a good thing! 

A Step Ahead

 October 21, 2020

One Wednesday a month we used to have a minimum day for Bradley’s school.  It was always weird and kind of inconvenient, I mean why not give them a Friday for a minimum day, less confusing.  But then I learned that it is a training day for staff, and the teachers didn’t want to stay late on Friday.  Although, the work day is the same length of time, they leave on a minimum day the same time they would leave on a regular day.  So I still don’t get it, but whatever, if they learn something that helps them with Bradley at some point, then by all means.  But that is nothing compared to right now, They are still having minimum days once a month while they are on distance learning.  Huh?  

Don’t get me wrong, I certainly don’t mind.  We came home from Therapy today and he was just absolutely down for the day.  We walked in the house as his class would have been signing of Zoom.  It was awesome.  And a clear reminder to me that my attitude about Bradley’s school experience is probably still not quite in the right place. But alas, I am who I am.  

He spent the day watching his movie, doing some dancing for a few brief moments...and also felt the need to vent some frustration throughout all of it.  When even his movie is making him weepy, you know he is just really having a day.  

It started with this morning, when he was adamant that he didn’t need a shirt...or a coat...socks or shoes.  He ended up with everything on by the time we got to therapy, except for the socks.  For OT, he got to work with his favorite OT, who is sadly moving on with her education and improving her life, and improving the areas and ways she will continue to make Bradley’s life (and lots of other kids’ lives) better.  But he hasn’t had her in a while, so of courses he plays his I’m cute card for her and doesn’t reveal that crabby defiant side we’d seen all morning long.  Probably, what came after he got home was a reaction to the changes in his life.  He doesn’t truly show right away that he misses a favorite person, but sometimes his emotions are a little bigger than he can handle about it and it flows over onto other things.  

Anyway, in Feeding, he was playful and eating carrots and celery - both of which he spits out at my house.  Then he ate apple....so he happens to spit that out at home too sometimes, but not always.   So I mean, whatever. One of his words he was practicing in speech was “turkey”.  So I asked if he said it and how well.  They said well... I said great, cause he hears it a lot at home, because we call him a turkey all the time.  Seems only fair he can say his nickname I think.  

His little episodes of frustration boiled over when Dad took Sydney to physical therapy.  Although I do think he was sad to see Dad and Sydney leave, I also know that the big crocodile tears were mostly a croc.  But then he started tossing toys, so I took his movie and told him “Throw again, and mommy’s.”  So he thought about it, but I was holding his movie, so when he looked at me again I told him “When you clean up, you can have your movie.”  

Then I sat and waited.  He managed to pick up all the blocks, while whimpering.  When he got to his GO-Go Smart Cars, he started cleaning up, then decided to turn them all on as they rolled through the tunnel into the box.  And then out of the box, and then back in.  Thirty minutes of play time later, he decided to finally put them all away and came for his movie.  Five minutes after that, he determined he was hungry so we left his movie on the couch and came to the kitchen to eat.  

I know I frustrated him today, probably made him a little mad too.  But don’t feel sorry for him too much, he got his revenge.  While he was waiting for his food, I was also getting the rest of dinner cooking.  So I was in and out of the garage to the freezer out there quite a few times.  Apparently, I was not moving fast enough with his food, so he locked me into the garage.  Because most things have a bright side, while I was standing out there thinking, asking him to unlock the door... I determined that he was definitely improving his dexterity by flipping the lock to lock rather than always just trying to unlock the front door. I applauded his comedic timing and how well that is improving as he flipped the lock while I was out there instead of following me into the garage as his norm.  Then further enveloped by my ability to see his little feet quietly creeping from the kitchen as I peeked at him through the cat door.  And finally, his completely typical acting nonchalance as I hollered for Madison; who finally came to open the door, all while finding Bradley casually in the hallway with a look on his face of “What’d I do?”  And then slid back into his chair at the kitchen table like: “You gonna get my food now Mom?”  

Touché my boy.  Touché.  

Yeah, so he got some food and dinner got started finally, only a little behind schedule than I had originally planned. He ate two platefuls and then returned to the living room, his movie, and a pile of blocks that he immediately dumped onto his lap.  At least he sat here and ate without his movie, almost slowly with almost small bites.  And he apparently, has decided to wait on his popsicle until Dad and Sydney get home and once everyone else is eating...then he might sit with us while he enjoys his dessert.  

So there you have it.... the student has become a more adept student and managed to out maneuver mom today.  Sydney has another doctor appointment tomorrow in LA, so Bradley will be with Dad for the day again.  I’m almost relieved - let him pull his tricks on Dad for a few hours, I think I need to step back and start trying to figure out how to get back ahead of him again - if that is even possible.  

First up was put the deadbolt key for the garage/kitchen door in Eric’s tool chest.  And when I am done here, finding the key for that lower handle and putting it out there too.  

Trying to keep up with my kids has never been about keeping up with one of them it has always been all of them.  Just like trying to stay a step ahead has always been about staying a step ahead of all three of them.  I just never realized that my youngest was going to turn into a prankster too... or at least that is what I hope he was doing... I did make him mad when he had to clean up.  Hmmm....  

To LA for Sydney

 October 20, 2020

Bradley isn’t the only one in the family to have health issues.  Dad has a bunch; in fact, this virus running around is scariest for him over any of the family.  But Sydney is also compromised, her asthma is concerning around this virus too.  But she has been having some issues with her sinuses the last couple years, so we have been trying to unravel that.  Literally; a year ago, we were supposed to see the Sinus Specialist at CHLA, And after an incredible amount of appointments being postponed and rescheduled, she finally had her appointment today.  And it kind of sucked because we could finally get in and the sad part is that only one parent could attend.  We’re talking about the doctor that talks about potential surgeries as her main focus of practice, but both parents aren’t with Sydney in order to hear it all and both ask questions.  Not every hospital is following the same protocol.  Eight miles down the road at UCLA, both parents would be welcomed into the room.  CHLA only allows one unless you can get special permission to get both parents to attend.  Sydney doesn’t fight like Bradley, so just one parent is necessary.  

So I drove her down there and Eric stayed here with Bradley.  Bradley had therapy and from the video Eric showed me, he was doing fantastic without mom hanging around.  I figured he would, but sometimes he actually does miss me and will spend some time asking for me every few minutes anyway.  I don’t know if he ever asked for me today, but I can say that I spent a few minutes in the van glancing behind me and forgetting that Bradley wasn’t with me.  :-). He spends a lot of time with me.  

Sydney and I got checked in to her appointment and waited for the doc.  It is always tedious to have to go through her list of medicines, but it is truly frustrating and a tiny bit nerve wracking when they don’t have all of her meds on the list, especially something like her Advair.  So I was concerned, but worked through their list to make sure they were up to date.  The doc came in about five minutes later and I was relieved to know that she had the notes that came from Sydney’s pediatrician so we weren’t completely reinventing the wheel so to speak.  

We have a few more answers now, and we have a plan to get even more answers.  We know that Sydney has a Deviated Septum, but we just aren’t sure where her Reflux issues fit into the picture and which way we should go from here.  At least we are going forward at last so that feels better to all of us I think.  Of course, the longer we are relatively shut down in our state, the less she is around others and their germs and the less she gets her infections.  But the doc was pretty funny, “When, not if, you get your next infection, call or email me so we can look at you right away so we can determine where your infection is beginning.”  

So just another piece in the puzzle of figuring out my middle kiddo.  She keeps the medical world guessing as much as Bradley does.  I am just grateful that the two of them try to space things out so I don’t have them both struggling at the same time all that often.  

Sydney has gone off to Volleyball practice with Dad, while Madison is hanging out here with me watching the Baseball game.  As for Bradley, he is true to his usual form.  Lately, about 7 each night, sometimes at 6:30, he walks down the hall and sits across from my bedroom door and stares at the blinking light from our computer. This is sort of our trigger that he is ready to start winding down his day.  Tonight was no different.  I took him in, gave him his medicine, and then put him in the shower.  He likes showers, but he likes to stand in the corner of the shower so I can barely reach him.  And he can never figure out why it is that I can’t keep from getting his face with water...Well Bradley, maybe if I could reach you better I could keep the water off your face and just on your hair.  Stubborn little guy.  Who does he remind me of? Hmmm....

But he is settling for the night, so it’s time for some snuggling and then putting him to bed for at least a few hours before we hang out again.  Sigh...  Not sure if he missed me, but I kind of missed him.  I usually do, and I usually miss him more than he misses me.  Haha.  But that’s cool, that’s mom’s job after all.  

Working Hard

 October 19, 2020

Bradley likes to turn on every Go-Go Smart car he has and then leave them to make little humming sounds that try to drive me absolutely crazy.  You see their batteries are slowly dying.  Once the battery is officially dead, I ditch the batteries.  He has so many that my pocketbook and my sanity could not survive replacing all the batteries.  So I only replace a few of them.  Most of the time I have to go through every single car and test it to see which one is actually on.  Either way, last night I had Madison pick them all up for me and she tested each to make sure they were off.  Apparently, she missed one.  This morning before we left for therapy, Bradley paused on the way out the door because Madison had forgotten a car, so Bradley had to pick it up and go put it away in his box of cars.  Leaving the living room tidy, we were able to walk out the door and head to therapy.  

Too bad mom asked him to wear a sweatshirt.  That was a major wrench in his plans, and then dad didn’t want to let him change his shirt... so mom thought we could compromise.  I offered to let him change his shirt if he wore his sweatshirt.  So he put his new shirt on and then put his sweatshirt on and walked out to the car - grumbling all the way.  

Once in the car, he proceeded to enjoy watching Cars on the DVD player in the van.  And when I say he enjoyed it, he was busy all the way to therapy trying to repeat every phrase from the movie and at the top of his lungs.  There wasn’t a ton of clear phrases, but there was a whole lot of us hearing him yell, “McQueen” and a whole lot of sound effects that McQueen makes that Bradley was copying pretty well.  Luckily for Bradley, he was super cute as he was trying to copy what he was hearing for two reasons...    1. He slept even less last night than usual (how the heck is that even possible?  I have no idea!) and 2. Within moments of getting put in his seat, he did mange to wriggle out of his sweatshirt from the top down, all while not coming out of his seatbelt harness.  Once we got to Therapy and he stood up out of his seat we finishing unzipping his sweatshirt and he didn’t have to wear it to therapy.  

He did great for both therapy sessions and when we got home I had to put him on his Zoom session with his school.  He fussed quite a bit, might have thrown his juice cup in frustration, but after some breathing and working through it - he came around when they mentioned pumpkins.  Since they were having some trouble getting their video to load, I let Bradley share the pumpkin that Sydney got for him, along with the other two small ones we have, along with one that Madison brought home, and another larger one that Sydney brought home and had drawn a face on it for him.  He was quite proud of all of them, and managed to listen, if not concentrate on the story they had for him and the other little girl that was in class today.  

We finished class and he came and asked me for his movie, which he enjoyed for a bit.  He came into the kitchen and asked for a popsicle, so I made him eat his lunch and told him he couldn’t have a popsicle because his behavior therapist was due within the hour.  So he took a bite of peanut butter and jelly - determined that he wasn’t a fan - then opted for peaches instead.  He enjoyed them and then decided not to  ask for a popsicle again, and just headed back to the living room instead.  

When his movie died, we took care of his diapering and meds and then when we came back out we decided to watch some Mickey Shorts and don his IronMan Costume.  He finds the Mickey Shorts to be quite funny and he usually laughs his butt of.  This time he found it more interesting to keep watching Eric and I as we chuckled through them, making faces at me all the while.  

By the time his therapist arrived, he had decided he was too warm in his costume and had stripped that off.  He didn’t want to answer the door today, but he did come running (he may complain, but he loves his therapist) and gave her a very enthusiastic “HI!”  And then worked through “Come in please.”  

I learned that he is tall enough to reach the top of the phonograph Eric gave me, because on top are his Token boards.  One for earning a popsicle and one for earning his movie.  He took them both down and then took a careful look at them both before handing her the token board for earning his movie and tried to put the popsicle one back.  I almost lost it.  Smart boy.  She told him she needed the one to earn his popsicle first please, so he agreed and gave her the correct one and then sat down to get to work at playing.  It was still pretty awesome.  I love seeing all the times that he is trying to outsmart us, trying to manipulate to his advantage, being so much a typical little boy.  It makes my heart so happy!  

He worked for his popsicle, but when he came to the kitchen and I asked him what he wanted, he decided to change his popsicle choice to a cookie.  He was super clear and super happy to have a cookie instead.  It was really great.  

He of course was slightly more stubborn than his usual, but then he was a busy guy and really working his little brain to try to out maneuver all of us this afternoon and evening.  He is way tired now, and sacked out.  He worked really hard today.  It doesn’t seem like much when you lay it out like I have here; but my goodness, my little boy had a very full and busy day today.  Every little sound and every little attempt to communicate is such a big deal, and so much work to achieve - at the end of the day it is super exhausting.  If we could get his brain to relax some more, he might sleep more.  But given his moderate apnea, if we could help him breath better at night...he might sleep better and be ready to wake up and talk to all of us.  

But that’s ok, one day at a time.  One great day at a time, especially when he puts in the kind of work he did today.  

A Sunday - The Good and the Bad

 October 18, 2020

Sydney went to play in a scrimmage type tournament this afternoon.  They went 1-1.  Eric dropped her off because of course parents couldn’t stay...although one set chose to set up their live stream so that they could justify being in the gym.  Not sure why they both had to be there, but hey - they have managed to figure out a loophole so good on them.  I’d say I wish I had thought of it myself, but I told Eric he should run the camera so he could stay, but the Director told him he would have to sit in a small, claustrophobic room to do it.  Turns out, not so much.  

So while Eric did that, Bradley and I hung out here.  He decided that he wanted to know why his mom kept stepping outside with the dogs so he finally came outside too.  He watched me throw the ball for the dogs from his favorite perch on his stool.  Eric even joined us for a little bit and then when we thought we were done - or rather I think the dog was hoping we were done, Bradley went and got the ball and threw it between us so we knew that he wanted to keep watching Sheba bring the ball back.  I personally think that he was enjoying Reba chasing the ball down and trying to corral it since it is bigger than her head and there is no way she can pick it up.  Mostly, she gets frustrated by her inability to pick up the ball then runs likes a maniac all over the yard.  She has these amazing leaps that cover quite a distance and make her look like she is flying.  I personally think that this is Bradley’s favorite part. Or maybe that’s my favorite part and I like to pretend it’s Bradley’s too.  Either way, he watches and laughs with us about it.  

So we all came back inside and now the dogs are still pooped and lying around the way dogs do.  Bradley watched his movie until the battery died and then I pulled out a jumbo floor puzzle of the ABC’s while Eric and Sydney were gone.  I laid out the poster to help him match the pieces better and hopefully keep frustration down.  I think that next time we should try without the poster because he was moving through the pieces like nothing.  He isn’t quite up to date on the alphabet, but I love to hand him a puzzle piece and hear him say “Egg”.  Maybe it wasn’t the letter and he wasn’t really indicating that he recognized the letters as we worked through the puzzle, but when he was willing to identify the objects in the puzzle, I was willing to let that go and celebrate what he could do.  Do I wish that the puzzle makers had chosen things like: “D - Dog”  Or “I - Ice” instead of “D - Dinosaur” and “I - Ink” ?  Why yes, that might help a whole lot in his ability to identify what he sees in the puzzle.  But I guess it will just be more exciting when he says D for Dinosaur and I for Ink.  Sigh.  

Anyway, now Bradley is busy pushing his cars through a tunnel - which is actually a hollow roller that his sisters use to rollout tight muscles etc.  Anyway, they have a new one that is not hollow, because Bradley has decided that this one is his and necessary for his successful tunnel (pretend play).  Or at least that is what I have decided as the mom in this house.  :-).  He likes to send them through and then line them up on the couch cushion beside him, if you by chance choose to touch his cars, he will then take them back and put them back through the tunnel because you have apparently contaminated them - and then send them back towards the cushion.  He likes to also set his movie into the edge between the cushions so it stands and he can set the cars before it like they are all watching a drive-in movie.  We have had to be very careful to remove any extra cars to make sure he stays even, because that is a level of flexibility that he has not reached.  But that’s okay, we’re working on it.  When he is done with all that, he likes to have his cars roll through his tunnel off the couch and apparently off the ‘cliff’.  When he started this I would grab their box and put it under the tunnel, and he thought it was hilarious that they rolled through the tunnel and into their box.  He won’t always adjust to make sure they have their box to roll into when he is on the couch, but when I tell him to clean up and they are on the floor, he will sit next to the box and every car will enter the box by way of the tunnel.  He has a great time and I have a clean living room...definitely a win-win situation for mom.  

All in all, a relatively quiet Sunday in our house.  Bradley played a lot and is now sacked out snoozing.  Madison is at work and we are waiting for her to get home from that soon.  And Sydney is trying to stay awake herself after having her first tournament in quiet a while.  Meanwhile, Eric is watching a baseball game I have no vested interest in this year, and when I finish here...I’ll probably go finish a couple books I am working through.  I guess the truth of a life with Bradley is that quite simply, there are more days like everyone else’s days then there are days that are as different or as extra as his chromosomes.  I whole heartedly miss watching my daughter play volleyball, and this will be the hardest season for me than we have ever had; but hanging with Bradley is always the same, a time for play, and learning, and growth - we can count on that always being the same when we are together so that helps.  

Have a wonderful Sunday night Friends!  

Ah, Such Small And Sweet Successes

 October 17, 2020

The weather the last few days has been insanely hot and yesterday a ton of wind.  Enough wind that I am always slightly hesitant to take Bradley to the car even because of it. This morning the heat was greatly delayed and the wind had stopped, what a relief.  I have been trying to get Bradley outside on our good days in the past few weeks; but for some reason, I am having a hard time encouraging him to go outside.  And when I say a hard time, I mean, I am sitting outside or playing with a ball outside and calling to him and Bradley just looks at me like I’ve lost my mind, turns and walks off somewhere deeper into the house.  Granted it has been pretty warm and Bradley really can’t handle the heat or make his body adjust to the heat.  So I know that he isn’t all that interested in being outside.  Plus, his sisters aren’t coming out to play so what’s the point of playing on his play yard or even playing ball when your only playmate is your mom?  So, you know there’s that.  

Not sure why, but today was the day.  For whatever reason, today he decided that the weather was perfect, and the timing was right - so he took his mom outside to play.  I don’t do the play yard, but I do have some experience playing volleyball, so while he sat on his favorite stool (let’s not get exercise crazy or anything) he let me help put his hands in the right position and we worked on his passing. I think he has real potential at being a passer once he learns to keeps his arms together, to look at the ball, and maybe to stand up.  Really minor adjustments when you think about it.  But we did that for a bit, and he got bored and just looked at me.  So I got tired of just standing there, and I decided to go sit.  

I set myself up to swing in one of the hammocks and called to Bradley to come sit with me.  Turns out, he has a better memory than I thought.  He remembers that typically, a snuggle with mom or dad in the hammock means a nap for Bradley.  Given the time of day, it is probably best he didn’t join me and come take a nap, we both would have wound up sunburn and since I just had a small pre-cancerous spot removed and didn’t have my hat, a nap in the sun is not on my list of things I want to do.  

But he did decide to climb into the other hammock.  Bradley brought a beach towel to put in his hammock and then climbed in and settled into a slight sway.  For the longest time, Bradley has always refused a swing of any kind.  Since June, the swing at therapy has been a cornerstone to helping him regulate and then get back on task to complete the work put before him.  Which is why when we found a hammock in the garage storage, we bought a frame and put it up.  That worked so well, we decided to get a second one.    Now when Bradley needs it, he has a sort of similar swing to use to help himself settle.  

Today, he almost settled himself into a nap in his own hammock on his own.  I’m not sure what really roused him, it might have been the warmth of the morning turning into the warmer early afternoon, but for some reason, he climbed carefully out of his hammock and walked into the house.  Of course, he soon after chose to walk to the kitchen and have peaches and a sandwich for an early lunch, so he might have just been hungry.  

Either way, I was happy that he was willing to come outside with me to play a little and get some fresh air on one of the rare good days we’ve had in the last few weeks.  Heat, smoke, and winds...it’s been rough.

In other good news of the day, he decided to leave his movie behind and enjoyed every meal at the table without it!  We worked more on drinking from an open cup and he is showing such wonderful progress with it.  We haven’t progressed past a Dixie cup and water, but he doesn’t seem to mind.  Today we actually used an open cup with a tongue block in his straw - it helps him to work on lip closure that helps him learn to close his lips on a cup.  He isn’t always willing to try, but today was just the kind of good day that had him trying.  He was more compliant with diapering and meds, and for once he was willing to work through choices with Madison to get what he wanted rather than throw a fit - showing such wonderful flexibility and patience.  

My little boy is growing up.  He is practicing all the skills he is trying to master throughout his twelve hours of behavior therapy a week.  Luckily, the ups and downs of therapy have settled into a nice balance between a very nice supervisor and a sweet therapist that Bradley loves.  And I am grateful.  Our last experience with attempted Behavior Therapy was such a negative, it was really hard for me to make the call and get it started again.  But I have learned a lot, I am more out spoken than I used to be, and I like to hope I am a little bit wiser and better equipped to negotiate the nonsense that comes with insurance and therapies.  Regardless, things are going well right now in therapies, and Bradley is willing to continue to work what he is learning with us - so I think we are having more success for sure. 

There are less tears and more smiles, so that’s really all I need.  

Have a great Saturday night.  Supposed to be another beautiful day tomorrow...so who knows, maybe more play time outside in the morning.  :-). We’ll see.  

When Others Control.

 October 16, 2020

I am struggling right now.  Really struggling.  I have weathered the storm that has blown across the last seven months with an attempt at calm, understanding, and humor.  I have tried to withstand the harsh realities of what is constantly battering my kids, my husband, my friends and family...and I have tried to be a quiet voice of hope and connection.  I have tried to stay optimistic and to pray that things are going to right and the sick will be healed and the virus will run its course and we will emerge back into life...and that somehow that semblance of life will be slightly altered, but maybe not completely re-shaped.  

But that isn’t happening.  

We have tried to keep perspective as each event or loss is acknowledged.  Madison was to have a last dance show, I mourned that one quietly as she mourned it loudly.  The same week they canceled Prom and the Senior Dance...then came Grad night, and Graduation and finally Grad Week.  Graduation hit me hard, you can’t get the special days back.  And my parents taught me about loss like that and how important it is to make sure that you recognize the big days and avoid the nonsense that might make you miss it.  When my parents Divorced, anger turned to kindness when they realized that my brothers and I would only be graduating from High School once, hopefully only marrying once... all those milestones that neither wanted to miss but they would have to be friendly enough to sit together in order to be a part of it.  At the time, my parents thought we might go to College, but it wasn’t a given back then.  My oldest brother jumped two feet into life and made it a great one and would marry a lovely lady.  My next oldest would go to College, and would jump into a great job that has lead to a great career and his life has increased with a beautiful family.  I would also go to College, marry a wonderful man who would show me the world and help me bring into it three amazing kids.  Pretty amazing lives really... and my parents have tried to be at all the milestones, and are now pretty good friends.  So helpful.  

So I know that these milestones are treasures to enjoy and not ignore or downplay. I agreed to be all in when my kids were born.  I couldn’t get pregnant for so long, that I just promised myself, and God and all the Fates that if I had children, I would be a part of all of it.  I would take them to their practices and all the dances, I would sit through all the band concerts (even the very first ones) without ear plugs.  What I didn’t know, was I would get weepy watching my wee girls in their first dance recitals, and then in every one after that.  No idea what the deal is with dance, but truth is truth, watching them dance always made me misty.  I would cheer loud and hard at their games...from basketball (maybe not as loud when I had the grandma from Colonia beside me in that one game), to softball and volleyball. When Sydney made a stop at second and threw a player out at first, I hollered.  When she slid into home under the tag to score the only run in a play-off, I jumped in the air in my excitement.  When Madison caught the only ball lifted into the outfield in the whole season and then sent a bullet to third to keep the girl from scoring, I whooped and hollered!  And when she hit her first homerun, I cried and cheered and cried some more.  When Bradley walked up the stairs at the gym by himself, I held my breath so my joy wouldn’t overflow and scare him.  And when I said “I love you” and he clearly said “I love you” back to me the first time...I managed to hold it together in front of others.  And when each one of my children called me “mama” for the first time - I always cried.  

My investment is real and is non-negotiable.  We were so grateful that the girls had their High School volleyball season last year, and my heart absolutely broke for all that was lost for my baseball playing nephews - and every other young athlete that had to sit down and not play.  And I am hearing there might be play this year, and I admit that I have my fingers crossed and I am holding my breath in the hopes that it actually happens.  I hope for the kids’ sake they all get to play.  And I do this knowing that as the guidelines are coming - officials are trying really hard to push the parents out of the gyms as much as possible, if not completely...they are finally cutting me off at the knees.  I can put up with a lot, I can bend and I can comply...but now, now they are starting to put forth guidelines that are making it where we can’t even be around to see our kids play.  

More and more it’s starting to look like it will be one of us driving Sydney to a tournament a couple hours away... and then sitting in the car to wait while she plays and then bring her home.  One parent might be allowed in for some of it, and maybe we can switch off - but Bradley won’t be allowed because no siblings.  So that means one of us has to stay home and one of us has to make the drive.  There is discussion of 23 persons per team - so the number of players and coaches and then the remainder can be parents...  Sydney is on a team of 14 girls.  The math sucks.  On our last team, the numbers were in our favor, it was rare to have more than four parents at a match and Eric and I were two of them.  This team already has more interest from the parents and more indication of involvement.  Which makes for a better team in all ways...except maybe in being able to watch them play.

I want to be there to watch her play, to share in the highs and lows that come with each match.  I want to see where she has improved and where her work should happen next.  I want to see that amazing play or the off centered pass that didn’t go as planned.  I want to be in this part of her life for as long as we have, because she is a Junior and will be off to College soon.  She wants to play College ball but who knows if she will or where, and if I will get to see her play at all in College.  Plenty of athletes make the team and never play a single minute, College ball is different.  Who knows what tomorrow holds for her.  So not being able to be a part of her play now, that is turning into the hardest pill for me to swallow.  In Vegas a couple years ago her team was headed to the winning bracket and my daughter went for a ball, her momentum took her up and over a chair to land on the other side and compressed her knee so badly her tournament was over and as I put my arm around her I wondered if this was the end of her playing as well...it was a rough injury.  I can’t imagine if I had not been there when it happened.  I can’t imagine not sweating through every play of the next game she played.  Watching and praying that her knee was back in the shape it needed to be for her to play safely.  I was very nervous and very determined that she not know.

We have to get her to practice, to tournaments, even the out of state ones...and now we aren’t allowed to watch play - but they sure want us to pay for everything.  Maybe someone will stream it for us.  I have noticed more and more of an attempt to push the parents from the gym in the past few years...looks like the pandemic has provided the ammunition to make it happen and I don’t see us going the other way again.  

My last place where I was welcome.  Teachers pushed us out of the girls’ school day once they hit middle school and then High School, hah...parent who?  Bradley’s school followed fast on the heels of that potential and we have no idea what happens there when they are in session. And I had a really hard time with being pushed out of Bradley’s school day...and now Sydney’s volleyball.  So yeah, I’m struggling now.  It is not logical and in the grand scheme of things probably selfish, but life happens fast and we only get these kids for a small amount of time before they head off into the lives they are going to live and our importance dwindles. 

The girls will not remember very much of their early childhood when Mom was with them everyday and all the things we did - sometimes mundane and sometimes crazy.  But they will remember now. They will take these memories with them and every once in a while they will dust them off and maybe tell their kids about their parents being a part of the everyday parts of their lives and going to all the volleyball.  How we made them feel better about the losses and made them glow in the celebration of the wins.  These are the kind of memories I wanted them to take with them.  At least Madison has them, and Sydney will have some, but it makes me sad that so many opportunities for more are being stopped so abruptly.  

Sydney could have a really amazing team this year.  They could be ranked pretty high and their games have potential to be really exciting.  I wish I could also be excited about it; but for me, I am dreading the season and ready for it to be over.  It all just makes me so very sad.  

So there you go, I’m just really struggling right now and I hope that tomorrow will be a better day.