Sleep Study

 October 6, 2020

On July 29th, Bradley, Eric and I traveled to CHLA for a Sleep Study for Bradley.  Being as things are like they are, Eric had to drop us off at the hospital and then he headed back home.  Seems excessive right?  Actually, there was a master plan to all of it, I promise! On the 30th, Bradley had an Eye Appt at UCLA, the two hospitals are literally 8 miles apart...thirty minutes with traffic, but whatever.  Eric couldn’t stay at CHLA with us, so he went home and slept and then came to get us and be with us at UCLA, because he could be with us there.  Hmmm....  

So the Sleep Study! 

OY!!!  

Actually, Bradley was pretty awesome.  The fact that check in was over a half hour past his usual bedtime, left him a bit less rambunctious than his typical.  Or perhaps, his young mind has finally helped him to accumulate some memories and typically the hospital provides traumatic ones; no matter how hard we all try, so he just remembers and is more sedate there.  But, either way, he was less rambunctious and walked with me without any trouble.  Considering I looked quite similar to those pack mules you see walking down into the Grand Canyon, or even in the Old West movies and games...it was a Blessing that he was such a Super Boy and walked beside me.  I had his Backpack, his food bag, his pillow, his weighted blanket (that gets a pound heavier with every tenth step I want you to know), his weighted stuffed dog that he actually named “Buzz”, and tucked away the secret weapon, his IPad.  Oh and in case you were wondering, Buzz the wonder dog gets heavier after every fifth step.  There’s a science to this and I figured it all out during my wait to get picked up for the Sleep lab and during the extraordinarily long walk to the sleep lab.  

So somewhere around Nine we make it to his room and they provided his plush bed and Mom’s pull out chair bed.  We work on jammies and meds and then the tech comes in to start the painstaking process of attaching about a thousand electrodes to Bradley’s head and body.  And by a thousand I think that I’m pretty close.  He had them on his head, on his chest, under his chin, both legs and I think his arm.  He had straps and monitors that were tracking other monitors because apparently they’ve done this before and know that back ups need back ups as kiddos; Bradley included, like to wriggle out of these monitors and devices.  

And if you weren’t aware, my son is quite certain that when someone touches his head they are quite literally stealing his soul, and he is quite attached to his soul.  For my part, I warned the tech of his issues, and for his Octopus arms.  He said he would do what he could until Bradley went to sleep and do more after if necessary.  Got it. 

So I gave him his movie and he decided he wanted the blanket I brought for myself and shoved the weighted blanket and Buzz, onto my bed.  Mom takes a big sigh... And gives him the secret weapon and he starts watching “Sofia the First”.  Odd.  Why?  He hasn’t watched her in over six months, but he immediately wanted her, maybe he really does connect little Sofia to his sisters.  I’ve always joked and suggested...now I feel I might have a little more science behind me.  

So the tech starts working, and Bradley starts this low wailing.  I call it keening...just a constant and steady cry that was not screaming or ear piercing, but constant.  The electrodes all went on...head, chin, legs, chest, everywhere... and Bradley just kept this constant wail and a bowed head.  As soon as the tech finished, Bradley stopped crying and within three minutes, he was actually asleep.  Ten minutes, they had a reverse cannula around his ears and across his nose to keep track of his breath.  Oh yeah, they kept a camera on him the whole time too.  

We got through the night, ups and downs and only knocked that cannula out once...impressive.  The next morning, I took my little guy with the odd gel in his hair (interesting spikes I might add) down to eat some breakfast while we waited for Dad to arrive and taxi us to UCLA.  Parked in the shade, Bradley and I took small catnaps on the pallet I put on the floor of the van, and we even had a small picnic with our Chick-Fil-A lunch.  Bradley might have left there with yet another admirer in the sweet girl that worked at Chick-Fil-A, but that really surprises no one.  :-) 

We would see the eye doctor and head home after.  

It would be today long to get results from the sleep study.  Bradley and I took off at a very early hour this morning to head back to CHLA.  Bradley would get his weight and height, (60.8pounds - kind of disappointing as that is down and 50.5 inches tall) and then would let the nurse put a pulse ox meter on his finger.  What surprised me the most was when he held out his left arm for her to do his blood pressure.  She put it on and he wasn’t excited about it anymore, but I told him to “Freeze” and he left his arm on his leg and we got I think our third ever BP reading while he was awake.  Exciting!  

So what do we know?  Bradley has moderate sleep apnea.  While we wait to consult with his ENT in November, we will be introducing a CPAP machine that may not get more than de-sensitizing work for the next few months; but theoretically, if his apnea worsened from moderate to severe, he might be better able to tolerate and use the machine.  He could surprise me and be willing and able to use it soon, because lately there is nothing better than surprising mom; OR, he could put the machine in the same category as his hair and we’ll still be doing some soul searching to convince him we are not soul stealing!  I guess we’ll find out soon enough.  

For the most part, a very good day at the hospital.  His realization that he indeed was pretty amazing at the hospital has led him to consider the need to bow to the demands of therapy this afternoon a bit below him and definitely something worth fighting about...but hey - tokens are a life saver when it really comes down to it.  😁😂

Long day and still sitting in the middle of it, so I will close this out and get on to that ever full pile of laundry that haunts me!  Have a wonderful day all!  

Zooms, Oh Me oh My!

 October 5, 2020

Sometimes it’s hard to feel like the Zoom sessions with Bradley did anything good.  Mostly, I felt like I was just torturing my son.  I would try to prevent these damaging behaviors that would often lead to him hitting himself in the head with his own fist, hitting his head on the table or his chair,  or trying to hit me with his fist, or hitting me with his cups or whatever he could find.  When you want to talk about being pushed to the edge, these are the kinds of situations that make you leave the room to gain some semblance of control and the ability to react without responding.  You see I also have been reading and rereading a book about Behaviors in Children and Adults with Down Syndrome.   Respond but don’t react.  Easier said than done when you’re kid has hit you so hard with a fist or object that you aren’t sure if you are bleeding or not.  Or if that shadow under your eye is going to turn much more prominent and make people wonder.  Yeah, for forced isolation.  

And the thing is, all of us parents from his school class were busy texting and talking with each other, and I know that this is not happening with just my son.  All of us were experiencing these upticks in behaviors, and while most removed their kids from all Zooms, all pretense of school, and had no therapies; in our house, we were pushing forward as if the mere acceptance of stepping out was an impossibility.  This quiet suggestion that Bradley should be on his IPad all day to limp through this strange existence like in most of the other  houses that I knew of with a child with special needs; and yet, the sense of failure that I had hanging over me at that option, was somehow more than I could bear.  He could only learn for so long, so he was already on it more than ever.  My brain was constantly ticking through the options as I tried to implement ways to make him successful at home, with phone calls and emails in order to try to find a way to make him successful with his other therapies.  And I was tired.  A full house means more attempts at making meals and more often, what will Bradley eat today and if he won’t is he getting the right amount of Pediasure to make up for it.  How can I increase what he will eat and how can I keep his calories in the right place.  Spending more money online to bring in the kind of tools that he would see in feeding therapies, and behavior therapies, and getting better at the computer and the laminating machine.  But also trying to help all the kids hold it together - especially the oldest...trying to keep the additional stressors from being crippling to them, to Eric, and to me.  Using every tool in my toolbox to help them move through this quarantine with ability if not with ease.  I reached back into my memories of trying to cope with Bradley being so sick, with his immunities being so weak that our lives had to be so small, so contained, and I tried to remind the girls of those times and how we got through them then, and how that is how we would be able to get through this now.  There was laughter and tears, there was anger and bitterness, and there was pain.  The physical and the mental - the emotional kind.  

And through it all, I knew that this was hard for them, but that this was the hardest on Bradley.  Our boy who had been so isolated for so long, was getting out into the sun.  He was riding the bus to school for goodness sake.  He was making friends with classmates, he was going two places for therapy - and going often.  And he was making friends in those places too.  Other kiddos that he was learning how to approach and ask “Come play, please.”  And then it was gone.  

So what did we do?  What else could we do?  The best we could do everyday, and each night I would push aside the dread of the upcoming day.  A mind numbing dread that settled over me like a cloud that I had to force myself to not give in to, and I pushed myself to ignore.  I settled into work, hours and hours in between school and therapies for Bradley, I would fill my time with either work to find some way to make the next session easier, more beneficial...or my work.  Anything to keep the dread at bay and the hope still burning.  

At the end of the day, we found that there were some tools that were beginning to work. We implemented full time use of a Token chart.  Every time we sat down for school, or therapies there was a token chart with ten little Velcro pictures to put on as we made our way through the session.  We used a visual schedule for his Occupational and Speech therapy, where he could check a box after each activity and knew what was coming next.  And though he hated coloring, when we used a timer, Bradley would agree to practice coloring.  I kept a large sized box for behavior therapy, and four days a week for two hours, we would work through my box.  Puzzles, play-doh (did you know that Play-doh when shaped like a ball really flies like a ball?), coloring pages, Therapy putty, bubbles, matching games, word builders, marble runs, and math builders.  There is more in there, but that’s the basics of how I figured out how to get him through his therapy times.  

Where are we now?  He’s finding his voice.  Where before this he would never sit with me to work, now he will, and he doesn’t always complain about it.  Weekends provide the down time, and now he is more willing to get up and dance, to try to build his car tracks, to build blocks with us, to do his math boards or build words.  Though he doesn’t choose them, when he realizes he is bored on the weekend, I can offer the word building and the math boards and he’ll do both with me.  Somewhere in there, he’ll ask to dance too. And some days he needs and wants to sit in the hammock and swing, but this one tends to be on a day when he is feeling super stressed because that tends to put him to sleep.  And then when it seems that he has quieted his brain, he’ll ask to return to his movie again.  

Did anything we attempted to do during those very long Zooms, and those extremely long and stressful days actually do any good?  Maybe, he understands his Token Board and how to get what he wants by doing his work.  He can now blow bubbles, which he couldn’t do before.  He is using his voice, but he’s been back in in-person therapy since the end of June, so that might be all from then.  Mostly, he is thrilled to have someone in person to work with him and that seems to be the true catalyst to the sudden explosion in his use of spontaneous words and definite interest in repeating language.  

His behaviors are so much better, he is a happier kid.  He is able to communicate more of his needs, and we have learned to help him work through his behaviors so that we can all get to a better place, a better chance to provide what he needs or make him understand why he can’t and when he can get what he wants.  But that is a whole other blog for another day.  :-)  

`The Journey Starts with Me.

October 4, 2020

There is a time in your life you have to step outside of your comfort zone and be more than you thought you could actually be.  When you are a pretty shy person and you have children, you suddenly have to try to pretend that you aren’t shy and teach them to start things and do things that you wouldn’t ever see yourself doing.  I had to pretend that life didn’t scare me near as much as it does.  I had to pretend that I didn’t spend most of my day trying to find an adult that would be willing to do the adulting that I really am not qualified to do.  

Despite my efforts to the contrary; somehow, I became the adult and I have to figure out the way forward for myself and my kids. I was just beginning to find my way as a mom when my girls were little.  I wasn’t super great at being a mom, but I tried everyday and I was Blessed to be home with them.  But even as I held their little hands and watched them grow my heart hurt because I knew that I was the memory holder.  I was the one that was going to remember these sweet girls as littles and I just couldn’t fathom how they were going to grow up and not remember these times.  And it would weigh on me, so I would try harder to be absolutely present in every possible moment with them.  I sat in the theater and watched them dance and grow as they learned to be a part of a group and how to be a part of a class and synchronized in a group.  

I volunteered in the classroom, and when it fit in my work schedule, I took them with me.  I would play my IPod and they would sing along to Daughtry, the 80’s, and George Strait.  Their little voices singing off key, the words nowhere near correct, but so beautiful to my ears.  They would sit in my lessons and watch their little movie player with head phones and color, so quiet and so good.  They made friends with all my students and all my students’ kids; and even today, my kids remember those kind faces and think of their childhood with smiles and joy.  They loved their time with me then, and I think that they might have many memories from that time.  But we talk about that time and I share the memories with me to keep them fresh for them.  I am the memory keeper, I have to keep giving them the memories that they have forgotten so that they can keep those pieces, it’s important.  

And then I had Bradley and I had to completely rethink my life and my ability to be a mom.  And not just a mom, but a present mom, a mom learning completely new things, a mom learning how to fight for my kids, and a mom that is successful at building three masterpieces out of my three children.  

So I learned to pray a little harder and work harder to find my Faith and put it into motion.  I told myself that I would keep stepping outside of my comfort zone so that I could become so much more as a person, as a wife and most definitely as their mom.  

I know that my children are going to change their world. But I am learning that to help them do this, I am pulling myself out of what I know and choosing to try and become a better version of myself.  I am working harder on me.  I am working on my health, and in the process I am working on the family so that I can bring (even drag) them with me into better health.  But I am also working on our Faith, our Hope and the Promise that belief is the basis for starting every single Miracle that is going to Bless their lives and every single Miracle that they are going to Bless others with.  

Changing the world takes time, effort, and Faith.  I’m too stubborn to quit and in the end: “Your Whys have Eyes” and the eyes watching me are the Miracles that God gave me and I will not allow them to see me Fail.  My love for them is the very air I breathe and the light in my world!  I may not be here to see the Cathedral finished, but I will see the Foundation laid strong and solid and I have Faith that the lives they build will be worth every single effort.  

 

War of the Rash

 October 3, 2020

If you were to look up Roseola, you would see that it is a nasty rash that covers the body and is common amongst the youngest littles in our lives.  Usually.  But then there is Bradley.

He went to school one morning, tired as usual...common for him.  Bradley is allergic to sleep and avoids it all costs.  As such, he was getting a hefty dose of Attarax every night to help him go and stay asleep.  On top of that he gets another small dose of a drug that helps as well.  Together...they were just helping him get a few hours of sleep each night and then trying to help him not be so wide awake when he did wake up that we wold be spending hours with him waiting for him to fall back to sleep only to wake him up for school.  It is a vicious cycle!  

Anyway, while he was at school, he requested a nap on his IPad.  And they always let him.  First, if Bradley wants to sleep - you will not keep him awake and the ensuing fight can get ugly.  And two, face it, one less kiddo to work with at a time.  So he took a nap and when he woke up he had a temperature in the 100’s.  So mom was called and I brought him home.  At home, I changed him out, noted one tiny spot on his stomach and then Bradley ended up napping again for a good hour.  When he got up from that, I noticed a couple more spots, about as many as I could hold in two hands.  

The doctor’s office was full so I set him up to be seen the next day and just kept him cooled off with Tylenol and Motrin alternating.  By the next morning, his torso and his back were covered in angry red spots and the arms and legs were starting to be covered.  That was nothing to what was to come.  Bradley’s Doctor told us he had Roseola and we started these four hour medicine cycles to try to help him get through the next week.  

We thought that we would be able to give Benadryl during the day and Attarax at night and that should make him kind of sleepy all the time and a little less miserable throughout the whole ordeal.  Wrong.  

Turns out, Benadryl really doesn’t make him sleepy.  The anticipated three day fever lasted a week.  And Attarax which is given to people for allergy itching...wasn’t enough to get him through the night.  So we just had to nurse him through the days on Benadryl, give him all his usual meds with the addition of Benadryl at night, keep the anti-fever meds on board at even intervals and lay beside him through the night to keep him from scratching himself raw and bloody.  

It was quite a long week for all of us.  And in terms of exhaustion levels...quite the extended recovery attempt.  We would barely get Bradley back to school before the Fall Break and Thanksgiving.  Ours was a quiet Family affair, and my usual hustle and bustle to prep was quite a bit smaller than it would normally be.  But, when we sat at the Thanksgiving table, Bradley was healthy enough to sit beside me and eat like a big boy.  No high chair or improvised booster seat.  Just a little boy, in a chair at a table eating dinner between his mom and dad.  When you consider the true meaning of Thanksgiving, I guess we might have an advantage there.  We are always quietly thankful for each day, a gentle reminder of what could have been but isn’t every time we take care of his button site and the certainty that it could have been worse.  Even with the rash from Hell...it could have been worse.  Bradley managed to fight off what we were told was Roseola, what we acknowledge now could have been something else.  But his little body and his impaired immune system was strong enough to push through and then push out whatever it was that was attacking him, and we didn’t need a hospital stay to get through it.  That alone is quite an achievement in and of itself.  

He doesn’t take Attarax anymore.  We have actually moved on to a new med that helps with sleep, but it’s true assistance is probably in the gentle mood enhancing and impulse/anxiety suppressing that comes with it.  An anti-seizure medication that failed that job in patients but helped with sleep, anxiety and impulse control.  Given our current state of Isolation during this Pandemic, it was a timely and beneficial change.  Too bad he doesn’t sleep any better than before...but Attarax was creating anxiety in him, so he is much better off.  

We aren’t completely sure he had Roseola, we aren’t completely sure he didn’t.  We know it was something like Roseola with a lot of characteristics that weren’t Roseola like.  So as usual, we maintained that life with Bradley is all about mystery and trying to fit the pieces of a complicated puzzle together.  But that is what we expect with him and how we approach everything with him.  How do we puzzle out this new piece of Bradley’s world?  

But that’s the Challenge of Bradley after all, and every day is a new day with a new set of challenges.  Wouldn’t want life to get boring after all.  :-). 

The Tale of Two (Three or Four) Therapies

 October 2, 2020

So I think that I may have mentioned that my kiddo has the ability to see a million good behaviors and will choose to copy the ONE bad behavior he sees.  Last year, he definitely struggled when he started school, he had other kiddos in his class that had severe behavior issues and that of course was an open door for Bradley to copy and bring those behaviors home.  My son; who had stopped biting, started again.  The same with hitting, pinching and hair pulling.  His first attempt at biting had me calling a conference with his teacher - which somehow ended up complete with teacher and therapists around a table with a behavior therapist telling us she wasn’t worried.  Fast forward another couple weeks and he struck out at another student and while sitting on the floor, a peer surprised him and he reacted by trying to bite an ankle.  So as his mom, I am was both horrified that he tried to bite someone’s ankle, but being the me that is me - I was also horribly struck with the giggles of the image of my son’s face on a small chihuahua trying to gnaw on random people’s ankles.  

Regardless of how much therapy I probably need for my sense of humor issues, I accepted that it was up to me as the adult and a parent to try to find the answer for my son’s behavior and attempt to make him safer at school by sending him with better behavior.  Our last attempt at behavior therapy was a horrible experience and a horrible mistake; so I was not overly excited to get started again and had been dragging my feet until that second biting attempt.  At that point I picked up my feet, swallowed my discomfort and got the wheels in motion to start Behavior Therapy.  

They told me my son was the equivalent of a three year old - and I am not going to lie to you here, there is nothing worse to hear than having that conversation with someone when they are pointing out all the failures your child has and all of the areas he falls short in...and telling you that on paper he wouldn’t survive at nine years old in a Kindergarten classroom’s academics.  I left that meeting and drove numbly to pick up my little boy and take him to his Speech and Feeding Therapy.  His therapist and I always had some check in time with each other after and we discussed Bradley’s results at ABA (Applied Behavior Analysis).  I walked in numb, but I walked out warm and hopeful. 

You see, I forgot how much the group of therapists that help him with his Speech, Feeding and Occupational Therapy absolutely and completely love my son.  While we spoke, I could see the shifting of emotion from the frustration that I felt and they shared, to the determination that what some test had deemed his areas of failure would not remain areas of failures for my son because they weren’t going to allow that.

Not many weeks later, I would have a phone conversation with Bradley’s principal.  Eric and I felt that It would be beneficial to have part of his therapy hours at school to help Bradley learn to transition and mitigate some of the behavior problems that we kept being told about.  Bradley’s teacher was all for it, but then she was always open to what would help Bradley and would help her in the classroom.  I would learn in one three minute conversation that Bradley’s principal wasn’t interested in what was best for Bradley, telling me No before we ever discussed the issues and what needs to change for Bradley.  So he told me, “No, we can’t do that.”  To which I said, “Well, when you present me with the problem and I put all the pieces in place to help my son and make him successful at school it is ridiculous to me that you would refuse to even consider what is best for my son and would help Bradley navigate his day at school successfully.”  There was silence in the pause and then he told me he needed to speak to Bradley’s teacher to which I said, “You do that.  You know how to reach me.”  

My next action was to speak to all his therapists to devise a plan.  Within weeks I would be sitting with the owner of the Therapy Center, and we would be devising a plan to help me get what Bradley needed at school.  She would contact a Behaviorist and Advocate that she paid to come to our house and go over some Behavior parts for home, a plan for the way to implement positive reinforcement at school, and her plan to be a part of our next IEP so that we could get Bradley a One on one aide at last.    

I was taking Bradley to Behavior therapy four days a week.  Because Bradley likes to avoid work by closing his eyes and taking a nap, we went to the center for work to try to build a rapport with a therapist before we tried the in home therapy.  Meanwhile, I tried to keep him healthy enough to go and for each time he was sick (the little guy had pneumonia at one point) I was always reminded of their practice’s policy for missing appointments etc., etc.  I finally looked at the lady that came out every time to tell me that if she brought her form out to me one more time I wouldn’t bring Bradley back at all.  I reminded her that as an adult with a College degree I actually do know how to read and I can comprehend the paperwork I signed and that I would not be changing the means by which I take care of my son and want I have to do for him.

After that, things seemed to calm down at therapy and they started working with me.  Listening to me as I explained what Bradley needed to navigate his day successfully, and finally getting them on board with what I need to do to get the school in line too.  Our relationship changed completely, and perhaps not unexpected, they too became quite enamored with my son and whenever that bond starts to grow, things begin to blossom in Bradley’s world.  

But then COVID hit and the world of Zoom reared its ugly head.  All the strides forward fell off and the behaviors really started to exacerbate.  Turns out my guy is not a fan of Zoom.  Stunning I know.  And me taking hits to the head with his milk cup leaves me less of a fan as well.  Suddenly we were juggling, four days of Behavior therapy for two hours each over Zoom, three days a week of Zoom OT and then Speech, and three days a week for his classroom and one for school speech.  A house full of people and where every day should have felt like a weekend, it was not to be.  Our weekends were imperative for a chance to sit back and breath, to not put any demands on Bradley for just a bit and give us all a chance to relieve some of the stress.  

I’m happy to say that Bradley returned to in person therapies at the Center for Speech, OT, and Feeding therapies in June.  And about the same time, we started in home Behavior therapy two and a half hours a day, four days a week.  You guys, Bradley is doing amazing right now.  We didn’t change any of his therapy when school started, so he only does one Zoom with class one day a week and we compromise that on his non-therapy days we attempt two, but it’s usually one.  They wanted twelve zooms a week, we offer four and those I have to bribe him to sit through.  The way his world his blooming right now, I think we are doing the right thing. Don’t get me wrong, I appreciate the efforts to provide some sort of education...but the reality is that for my kid, digital delivery will never be an answer for him.  

These are trying times and it is only getting more difficult with each passing day.  Stay healthy and stay safe, about the only things we can hope for each day!  

 

Day One of Down Syndrome Awareness Month 2020!

 October 1, 2020

I think that the year has been crazy enough without my adding to it by doing something different than what I would normally do in October.  So here I am, ready to start a month of talking with you and to bring awareness about Down syndrome while letting you into the rooms in our house.  Mind you, most of the year seems to have happened on Zoom, and if you have followed anything about Bradley in the last few months, well - I am thinking even if you haven’t, you might have a pretty good idea of how FUN that has been for all of us.  Hint: Bradley is not a fan. 

Anyway, let’s move on.  For now I’ll take you back to better days.  Last year, my oldest was a Senior in High School, my Middle was a Sophomore and Bradley was a Fourth grade student.  What we thought were the BEST of times, turned out to truly be the BEST of times.  The girls played Varsity Volleyball together and we even have some visual proof of them on the court together - but most of the time Madison played front row and Sydney roamed the back and they subbed for each other.  Either way, super proud parents.  

For his part, Bradley was starting to attempt life in a small crowd, armed with his IPad and a few of the games even sitting on the bleachers with me, not always in the quieter confines of his stroller.  Does he need a stroller?  Yeah, he does.  He gets pretty tired, but for the most part our world is small enough that he can traverse point A to point B without it.  Longer journeys, he needs a little mobil way station and the stroller provides that.  What else?  Oh, those quiet confines... Bradley likes to watch the world happen around him while he has headphones on and can take his time to choose the moments he wants to view the outside world, or interact with the outside world.  Things can be so incredibly overwhelming for him.  So we would provide the safety confines of his stroller.  He can kick back with his movie, his headphones in place and maybe ignore or shut out the rest of the world.  It can be ideal. 

So he watched some of his sisters playing volleyball and sometimes he preferred his movie, and sometimes the overwhelm was so much that he would close his eyes and sleep through it all.  And when we thought he just didn’t like it, two things happened...one and then the other.  First, the girls played on the same Club Team (again, talk about proud parents...both girls on the court together- a true gift!) and that meant our constant volleyball tournament schedule slid into about once a month.  Bradley wasn’t inclined to like this, how do we know this?  He would ask “Val-ball” in the mornings when he was getting changed and medicated.  Hmmm...  Maybe he was just used to the constant run?  

Then, there was no more volleyball.  No more School and dare I say it - no more Bus.  You can imagine what he asked for the most...  Bus.  Everyday, for awhile.  But because Dad has serious heart issues, the devastation of losing the Bus was not quite as devastating when your favorite person is home with you everyday.  Turns out, most things are made better by having Dad here.  :-). 

But then, we started to get him asking for “Val-ball” and it occurred to us that though he might not be watching all the time, he’s enjoying the outing, the family being together.  He loves the breaks between games where he and Mom tool all over the venues.  He enjoys the differences in foods as Mom is always seeking the kinds of things he can eat, and experimenting to see what he WILL eat.  It’s a day of few demands, and much high enjoyment on his part.  We have to get up early and sit in the car for long periods of time so to make that up to him  - “Yeah, you can have your movie as much as you want.”  

Even in that last tournament; before the world shut down, he had the stroller to retreat too.  What made us so happy was that when given the option, he chose to sit beside us on the bleachers for some of the games, and he looked up quite a bit.  Will he remember seeing them play?  No.  Will he remember that he had success sitting like a big boy next to his parents on the bleachers?  Probably not.  Will we have to start all over when the world opens and we return to life again?  More than likely.  But then that’s the dance card that we have filled, a slow two steps forward and one step back.  On the good days this is our status quo.  Rougher days there might be quite a few steps back, but as long as we keep moving, there is always potential for moving into something better than where we are at right now.  

And though this is how we have always lived our life with Bradley; it turns out, this is a survival skill that we never knew were going to need to get through life in general during 2020.  Like we’ve been in training his whole life for these past few months.  Did we have struggles?  Sure, but none like so many others.  We were able to reach out with support to try to help others and make connections to ease the isolation and loneliness that so many suffered through, or that is what we tried.  As Blessings go, we counted ours and knew our counting was incredibly long.  

It’s Down Syndrome Awareness Month Friends!  Another round of the Blog Challenge: 31 Days for Trisomy 21!  

#Perfectimperfections  #31For21 #BlogChallengeT21 

World Down Syndrome Day 2020

Hi All!

Welcome to World Down Syndrome Day, crazy socks and all.  We spent the day together with Bradley, all while also running through the List of things that need to be done around the house.  Of course, this year is quite unique and will be remembered as the year of the COVID-19. The kids have been out of school a full week already; because he has Cardiac and Pulmonary issues which makes him the most vulnerable, Eric has been home since Tuesday. Bradley is also immune compromised which puts him as a close second in risk.  Things have been stressful as I watched a huge piece of my heart walk out the door each day to be surrounded by who knows what, and come back in to the house potentially giving another huge piece of my heart what he might have caught.  A huge load lifted when his work told him he had to stay home.  Another week and no one shows symptoms and I might even be able to breathe again.

The world has gone crazy and people are scared; feeling completely out of control, people have jumped to hoarding toilet paper, disinfectant wipes, and hand sanitizer.  We watched from afar a bit flabbergasted, not sure how an upper respiratory disease needed that much toilet paper...but then, people will panic and get what they can and hunker down for the duration or they will be oblivious and not care about the rules and run around playing basketball in the neighborhood or drinking at the beach.  Things have changed drastically and completely.  The world we knew is gone, the new normal will be a hard pill to swallow for most.  For those who have never worried about contact from the wrong person destroying your world...well, crash course friends.  Now you know what we've always feared.

I know you're scared, but let me bring you some light and maybe a map.  Doctors are our friends, our first line of defense and following their guidelines will lead you from the dark.  We will get through this and when we do, we will come back out to the world and be grateful for the chance to meet a friend for coffee, or hug parents that are too far away to see right now.  By following the precautions we are staying home and flattening the curve allowing our medical field to stay ahead of this and give us all a chance to survive should we be one of those that is affected in the worst way possible.  Brilliant minds who have been preparing for this and have the ear of the ones in power have a plan. Prayer is a great place to start and meditation is a great way to end your day.  Now is the time to find out who you are and set yourself down a path that leads you to where you want to go.  The material things are suddenly less important and our connections to people - friends and family are the truly most important things in our lives.

With the world seemingly falling apart around us, it may seem weird that I still wore my crazy socks in order to celebrate the beauty of an imperfect genetic glitch that gave my beautiful little boy 47 chromosomes, a heart full of love and a soul that is purely created.  For reasons I will never understand, God gave me this sweet boy to raise and in the process, this little boy has taught me how to be a better person, how to want the best for others, how to always try to find a way to help.  My son has taught me empathy and kindness.  I think I was a pretty good person before; I wasn't spectacular, but I wasn't terrible.  Having Bradley; being given the gift of having him in my life, I have realized that I am determined to be better than I was everyday.  Everyday I strive to add something to my development of me that makes me someone Bradley is proud to call his mom.

Our days ahead will be a huge test as he will be out of school until May. We will be trying to change his world up with a mighty shake to get his therapies to happen through Zoom and hope that he will take to the faces that he adores through the computer screen.  Considering how shy he gets on Facetime to people...I am not encouraged, but I also refuse to be completely discouraged.  We will get through each day as it comes, he will drive me close to the edge of insanity and then catch me just as I teeter on the brink, bringing me in close and reminding me why I adore this little boy more than the sun, moon and the stars above.  But ours is not the only house this will happen in, this will be happening all over as patience is tested and a new normal is learned.

As for me, I will continue my protein shakes and my fizzes; all my health builders that have helped me find the energy to face each day, even as Bradley keeps flirting with fewer and fewer hours of sleep at night.  I am determined to be a better momma and to meet his frustrations with less of my own in order to level the playing field for him.

We will be tested in this time over and over...but we will get through it together. I am here for you if you need someone to talk to, if you're scared, or if you need a friend. Don't be surprised when you suddenly get a message from me, I am trying to reach out to as many as I can; just to check in, to let you know you are on my mind and I want to know that you're okay.  In between, I am scraping down the hall bath getting ready to paint it - making that more presentable for company, because someday people will be back.

Be safe. Be mindful that what doesn't affect you might be carried through you and hurt someone else, so stay home.  If you are lonely, call someone, they probably are too.  Relationships can come out of this stronger than ever, we just have to put forth the effort.  Take care of each other, we will get through this together.

Happy World Down Syndrome Day Friends!  May next year's celebration be during much better times.