October 31st

Happy Halloween! 

Hi all! We are happy to announce that Trick or Treating was an absolute success! After Saturday we were pretty worried about how things would go tonight. I honestly think that Bradley absolutely loves the part of trick or treating that lets him walk up and either knock on the door or ring a doorbell. A close second is if there is someone sitting outside, he likes to pick a candy out of a bucket or have someone drop into his bucket because who doesn’t like treats? But mostly, he really enjoys sharing a smile with someone. He tries to use his voice and with a little help, tries to talk to them. But he is pretty shy, so smiles are his biggest shares.

We practiced saying “Trick or Treat”. And he gave a lot of effort and tried really hard. But what we found out was that he’s really good at saying “Happy Halloween”. Or as Bradley says it: “appy Hawlloweeee” so cute!!! So after trick or treat, he would say thank you and then Happy Halloween. His Thank you’s are very clear as well. He worked very hard and we walked almost two miles, so he was pretty exhausted when it was all said and done. There were more people out and more treats for the kiddos this year; last year was pretty quiet, so it was a lot more fun this year. It might have been more fun simply because his big sister was able to go with us, he loves his sisters! Despite having Madison with us, he did start to get tired and wanted his juice and his movie with headphones, so we made a left turn and a straight walk towards where the truck was parked. We did hit the available houses on the way, it didn’t seem to bother him that he didn’t get to ring any more bells, he seemed relieved that it was a little easier when he didn’t have to climb up the stairs to doors anymore. He definitely perked up when we got close enough to see the fire trucks that were parked in the neighborhood and they were handing out candy and stickers. Bradley took a couple pictures with Madison sitting on the fire truck; and it didn’t occur to me to have a picture with him or with Eric, but we got him and Madison. Then he gave all the fire fighters knuckles and said thank you and Happy Halloweens. I always like to have him meet fire fighters and police officers and sheriffs, I want him to be comfortable with them. I want him to know that they are who he can go to if something happens, that they will keep him safe. Anyway, we went by our old neighbor’s house to say good night, then we headed to have dinner as is our tradition when trick or treating is done. Simple traditions are such a great way to tie the bindings that keep the family close. 

So it’s Halloween and the 31st and that means the Blog Challenge ends tonight. A month of 31 blogs trying to shed some light on the life of a little boy with an extra chromosome. As many challenges as Bradley has, there are just as many little victories and precious moments that make his life as rich as anybody else’s, in some ways richer. Bradley has a simpler lifestyle, he has a few things that are his favorites, a few people that are his everything, and he is open to accepting anyone that is kind to him. Becoming one of his favorite people takes a bit of work, but speaking with a few of those favorites I have learned that they think as we do, he is well worth that effort. Everyday is another day of hard work trying to meet that next milestone, sometimes they are so trivial in our lives that you and I zoomed by without noticing; but in his world, such an achievement is amazing and end up being very big deals. Appreciating how big the little things are can really help to open the window into a world we forget to stop and see. We become oblivious to the little miracles that happen everyday which is incredibly sad, because sometimes the little miracles are the ones we regret missing the most. 

We have a lot of medical happening this week. In terms of major issues, that’s less the case in comparison to over all time consumption. I am taking Bradley for a COVID test tomorrow so he can have a sedated EEG Thursday night. But before that, we will follow up with our favorite doc, and last hold over of our time at CHLA. I guess you can say we’re keeping custody of Bradley’s ENT in our CHLA divorce. One whole day of school this week, but I am quite certain he will fight me when I suggest he get ready for school tomorrow morning. And despite a pre-op appointment today that tells us he has finally hit 69lbs (woohoo!) and is growing, I am still bigger than him. Maybe that’s God’s Blessing to me, keep Bradley small enough for me to be able to pick him up if necessary for a little while longer. I rarely do now, but if I need too, it is a perk that he is still a little guy. 

Before I sign off, a few Halloween pics for you to enjoy… 

It’s been another crazy month in Bradley’s world. Another Blog in the books, another challenge complete, another year of celebrating one little boy with an extra chromosome in Down Syndrome Awareness Month. Look with your eyes but see with your heart and you’ll know that this gentle community that gets over-looked, ignored, and bullied so often - is the community that will show you the path to joy. 

Until next time my friends, thank you for joining me on this October journey - 31 days, 31 Blogs for October, Down Syndrome Awareness and Acceptance Month, the very special 21. Love to you all! Thank you for walking with us! 

For the Love of Pumpkins

 October 30, 2022 

We didn’t do anything with costumes today. But Bradley almost put on his Ironman costume just because. 😁 Bradley chose not to wear his costume because something so much better was offered…by now, it probably will not be a surprise for you to know that it involved pumpkins. What will potentially surprise you is that we have to come up with a new method for knife storage and at a higher location, again. As Bradley grows, our storage for the knife block grows also…grows higher that is. Bradley has shown no interest or inclination to even try to reach the current knife block location. Yesterday, he let us know that unless I can make space in a high cupboard or on top of the fridge, we might be done with knife blocks. A container with a lock is the likely next step for us. Thanks to Curious George, who carves his pumpkin in his Halloween movie, Bradley understands carving pumpkins. Yesterday he decided it was time to carve his pumpkin. While I was in the shower, he got up from his lunch at the table with Eric and Sydney, and walked over to the counter, carefully pulled out a knife from the knife block, and carrying the knife in the proper and safest way (somehow) he walked over to the table, and then pointed to his pumpkin. Eric quickly took his little steak knife and we told him we would wait for Madison to carve pumpkins. Madison came home a couple weeks ago and told us that she was really wanting to carve pumpkins with Bradley this year. Anyway, since she was at work yesterday, we told him we would do it today. 

Fast forward to today. About the time I was prepping the table for pumpkin carving, Bradley brought me his Ironman costume. Seeing me ripping off pieces of butcher paper and Dad holding the big pumpkin, Bradley got very excited, abandoned the costume and helped me lay the paper down. Once we were ready, he sat right in front of the pumpkin (as completely in Dad’s way as possible without being in danger) to watch the carving happen. Standing beside him, I watched him laughing and smiling. Madison was behind him, supervising and trying to give her advice on Dad’s work. Eric looked at her and said, “I know it’s been a little while, but I have carved a couple of these.” 

Laughing at them, I thought back and said “The last pumpkins we carved were when we were in San Diego at Grandpa’s House.” Still smiling and grinning, Bradley repeated me saying “Ganpas house” very clearly and with excellent pronunciation. The amount of excitement that we had for him talking like that was almost as much as Bradley has about his pumpkins and the carving! It was so exciting! 

Eric got the top open and then had Bradley stand on his chair so he could reach in and pull the seeds and gooey guts out. I couldn’t believe he was willing to do it. He dipped in three times, but the third time, he wasn’t as thrilled that the stringy goo was sticking to his hand, so he let us know he was done with that part and Madison took over for him. It was petty funny, especially when he sat down and then supervised her work and then Eric’s carving skills. In the end, we had a smiling jack o’ lantern that was smiling as big as our boy. 

Over an hour later, Eric looked at Bradley and asked him if he carved a pumpkin today. Bradley answered him: “Ganpas house.” Does my son have a core memory from seven years ago? I don’t know. Maybe yes or maybe no…perhaps he just thought I was saying something about the pumpkin carving, but maybe he just has ahold of a special moment in time. I know the importance of holding these moments in time and carefully keeping them very close in my heart, my wish above all else is that Bradley has one of these moments held securely in his heart as well. Even further, my wish is that from today, this time with all of us around the table carving a pumpkin for Bradley all because Madison came home a couple weeks ago and said she really wanted to do this with him - gives the girls and Eric; and I truly hope that Bradley will hold this memory of us together today, for always. 

For whatever the future holds, I hope that the girls will keep carving pumpkins with Bradley, and someday if the fates decide to Bless them with their own littles, I hope they make some of these memories with Bradley too. Because as much as life goes on and the turning of time is never ending, it’s the love shared on days like today that makes all that time worth it. 

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance 💙💛. Thank you for wanting to carve a pumpkin with Bradley, Madison 😘😘 

Unhappy Shaggy

 October 29, 2022 

In my attempt to continue to help Bradley keep enjoying and being excited about Halloween, I put him in his clean Shaggy costume today (I got up early with him so I could wash his costume). Clean costume, Scooby by his side, and of course his new little pumpkin in his lap - we headed out hoping Bradley would love this day. Before we left the house, he was pretty happy. In fact, Sydney got these two shots of him with his pumpkin before we left for the day. 

She gets the BEST smiles out of him! But isn’t that the best little pumpkin? 

So today, the shops in Old Town were participating in a trick or treat event where the kids were able to collect candy from the shop owners. I think part of this is to get kids to stop trick or treating on Halloween, but that might just be my cynical side showing. Given the day - I guess it makes sense. 

So we put Scooby in Bradley’s little backpack and he carried Scooby around in it as we walked down the street. It was a little warm, and really bright. My boy decided that he wanted to become extremely shy and every time we asked him to practice saying: “Trick or Treat” we barely got a murmur and then his usual thank you’s were barely audible. He did pretty well until the point we passed a music store that was cranking their tunes, it was a little loud for him. But then we passed a restaurant that had a very kickin’ DJ and then the next had a live band. It was just a whole lot of noise and I believe that it was just a little more than our sweet boy could handle. 

He only tried one more trick or treat attempt and then he was cranky and very insistent that someone pick him up. His 68lbs is more than I can do for long and with Eric’s heart, way more than he should do. So we made the cranky boy walk back to daddy’s truck and didn’t try to trick or treat anymore. We think maybe the lack of doors to knock on, the light outside, all the differences from actual trick or treating, were all contributors for the things that threw him off. I guess Monday night we’ll see if he takes to trick or treating or not. 

Anyway, home we came. He wasn’t interested in taking his costume off but was happy to sit on the couch and watch his movie and play with his dominoes. Until he suddenly wasn’t. He was sitting there and suddenly started crying. Maybe he was getting upset because he got a video with fighting come up that may or may not have been part of the issue…what is positive about this moment, when I told Bradley to come see me, he actually got up and walked over to me and climbed into my lap. He usually won’t move, he’ll come with me if I go get him and bring him over to sit with me, but this was the first time that he walked over and climbed into me lap. Snuggled in, head on my shoulder, he cried a bit more and then settled his head on my shoulder. He spent a good half hour in my lap and when he wanted up I helped him up and he walked back to his seat and his movie. Within a few minutes, he was giggling and laughing at his movie. So whatever it was, he was back to himself and happy again. Good grief!!

I thought it was just Eric and I disappointed by the outing - but in his own way - Bradley must have been as well. Luckily, he is incredibly resilient. 

As one last treat for the evening, my Facebook memories popped up with a memory from the very first time that Bradley went to a Pumpkin Patch. Look at these little faces! Oct 29, 2012 - ten years ago today…my babies were still just babies at: 10, 8 and 2. 

I miss these littles everyday! Sigh! 

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance - Not the Best Day for Shaggy 

Shaggy and his Scooby

October 28, 2022

No idea why, but Bradley had no school today. We were very happy to have the day off and enjoy a quiet morning. We thought we would have a quiet morning but things are rarely quiet with Bradley. He wasn’t thrilled about having to eat breakfast before he could get his movie - but he did it, albeit loudly in protest. Once he finally got his movie, he was happy enough until he decided he wanted to have his speech iPad for picture taking as well. Of course, his mother is a pain in the booty and he couldn’t have that until after his therapy session today. Bradley of course completely disagreed with me, we had a discussion about it and he gave up and decided to cut his losses and enjoy the movie he did have. 

At therapy, they were practicing trick or treating today. So when I told Bradley we were going to therapy and he needed a costume, he went running down the hall and grabbed his baseball pants from yesterday. Only, I didn’t have a chance to wash his pants…and I had another idea for his costume today. So even though Bradley had a completely different idea for his costume than I did - he relented and finally put on a green shirt and brown pants, and glanced at but would not carry the Scooby toy that completed his costume - Shaggy. His OT thought it was genius. I’m pretty proud of that one too. 😉😊

After we left Therapy, we met up with Eric and then we hit the pumpkin patch. We thought about the little area Home Depot has out front, but Eric thought it was too tiny. Instead, we went to another patch in one of the fields. We almost waited til tomorrow to go to another local farm, but Bradley hasn’t been to one in years so I was worried he would be extremely overwhelmed. Turns out I was probably right. At the Pumpkin patch we went to, Bradley started down the dirt aisle and just kept walking. We finally figured out that he was headed towards an old rusty tractor and we think he wanted to climb up on it. So we directed him away from that and he started wandering aimlessly through the pumpkins. After a few attempts to step on a few different pumpkins, we managed to get him to choose a small pumpkin and a large pumpkin and then headed for home. 

On the ride home, Bradley sat in his seat with his little pumpkin beside him all the way. When we got home, he carried it into the house and it sat on the table next to his other pumpkin. At dinner, both sat in front of him. He likes his pumpkins. 

That Bradley is happy with his new pumpkin makes it a successful trip to the Pumpkin Patch. Was he really overwhelmed? Yeah, but I think he did enjoy his adventure overall, and he definitely enjoyed gaining another pumpkin - so one happy boy and another pumpkin or two in our house later, makes for a pretty good day. 

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance. Gathering pumpkins. 

School Party

October 27, 2022

Apparently, Bradley loves almost everything about Halloween. We all know he loves his pumpkin, and I will say that throughout the year he will pull out his Ironman costume and pick up his Winnie the Pooh trick or treat plastic pumpkin then stand at the door waiting for someone to open the door and take him trick or treating. When we were first learning how to do this, the girls would have some kind of treat he liked and after he knocked and tried to say “trick or treat” they would open the door, then they would give him his treat and he’d say “thank you.” 

Super cool right… only, we had to nip it in the bud, he was trying to make it a daily habit and I was way out of treats! So it took some Bradley frustration but he finally accepted that every time he gets into his Ironman costume he doesn’t get to go trick or treating. So now he puts his costume on and he sits with his empty pumpkin in his lap until he’s too warm and strips out of his costume again. 

He doesn’t really love the scary parts of Halloween, but he does love Curious George and the parts in the Halloween movie where this a lot of “Boos!” And the ensuing “Ahhhhs” make his giggle like crazy! If the video uploads, you can have an example of his Curious George love. 

Fast forward to today. Today, his class had a Halloween Party. When he got up I told him that he had to put his costume on. He got so excited! He ran back to his room with me and I helped him into his baseball pants and laid out all his jerseys so he could choose the one he wanted to wear. Bradley chose one of his Hosmer jerseys, because Hosmer is a fan favorite. I got him dressed, shoes on, his backpack set and lunchbox ready to go. As soon as I picked up his backpack and our towel though, he protested and started to cry, with large tears and big sobs. Apparently, I broke my kid’s heart this morning. 

Ugh! SMH!! 

I told him I was sorry and hugged him tight. I told him I understood how upset he was. But then I showed him that the bus had come. So he calmed down and got on the bus and though he didn’t wave bye to me, he didn’t cry on his way to school. 

Turns out, the school party was so much fun! He ate cupcakes and treats and they did crafts. And I know he did crafts because the evidence was all over his pants, so I know he was creative and excited at school. Plus his teacher’s note said he had so much fun at their party. 

Bradley got off the bus full of smiles and hugs, telling me hi and when I asked him if he had a good day, he said “good day.” So I guess in the end it all balances out. I am wishing that there will be a time ahead when Bradley will have a better understanding of what he is waiting for, what is coming… I would love for him to have the excitement of waiting for something without the heartbreak. 

Tomorrow, I am planning to take Bradley to some kind of a pumpkin patch. I am hoping to only come home with one or two pumpkins and not a dozen… if we go to a pumpkin patch, there is no cart and only what our little arms can carry. Thank goodness for ‘little arms!’

For now my little baseball player is sacked out from a very emotional and exciting day. Tomorrow is a new adventure and a new costume. Gotta make these days as much fun as possible, with as much memory building potential as we can. Wish us luck! ❤️🎃

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance. The costume was the treat and the school was the trick… but he still had fun!! 

Have Toy will Travel - even to UCLA

 October 26, 2022

Medical Wednesday! Bradley and I took a ride to UCLA for the eye doctor today. We were just there about a month ago and while we there, we learned that Bradley’s original eye doctor who left UCLA in 2018 - was back. Since Bradley’s eyes are a little bit off, we were very happy to return to his doctor. So what’s going on? Bradley has nystagmus and strabismus. His eyes move a lot. In order to calm them, he will turn his head and look back to the side, and then sometimes he’ll also close an eye to be able to focus. 

Because he’s not the most stable walker overall, we do want to try to help him as much as possible so we know that if fixing his eyes will help with walking and stability and better balance…we are willing to try. And as terrifying as every surgery for Bradley is, we know that this is a very easy surgery in terms of time in surgery, time in recovery and then recovery itself is so fast… or it has been. After his original surgery Bradley was jumping off the couch onto pillows because he could actually see them. It was a truly exciting day. 

Regardless, today we decided it would be best to move forward and sometime in the next few days we’ll hear from the scheduler and choose his date. Considering he has a sedated, overnight EEG next Thursday, I will push this next one as far as I can, hopefully closer to his Winter Break. 

I’m just wondering if Bradley is going to bring his new favorite toy… hmmmm…. 

On Friday, Madison stopped by the pumpkin patch that they had on her college campus and picked up a free pumpkin. She brought it out of her car on Monday evening and left it on the kitchen table. Tuesday after school, Bradley found the pumpkin. He has carried it around with him off and on the last two days. Tuesday night, he didn’t want to put his pumpkin down. But kind of like his baseball, he held onto his pumpkin for a good twenty-five minutes before he rolled it onto the floor. So then today, I tell Bradley it’s time to leave for UCLA, so Bradley grabs two things: his shoes (which he hands to me) and grabs his pumpkin. I thought about it for about a second, then ushered him out the door with his movie and his pumpkin. 

Although I was certain that I would be taking a pumpkin up side the head at some point on the drive, Bradley chose to let it roll from his lap onto the floor of my van. Luckily, the pumpkin was still intact. I refused to let him take the Great Pumpkin into the eye doctor, so it waited for us in the car. Fast forward, after I strapped Bradley into his seat, he made a move for that pumpkin. Again…. Images of the Great Pumpkin taking flight, I convinced Bradley that his pumpkin would be happiest in its own seatbelt, so the Great Pumpkin had a safe ride home and so did mom! 

The pumpkin is still a high value preferred “toy” for now. How long do pumpkins stay good before they start dying, getting smelly and moldy? Surely at the first sign of decay he won’t be as interested anymore right? Yeah, while he’s at school tomorrow I’ll be at Michael’s and HomeGoods or something … surely someone has a fake pumpkin that is real enough to replace a real - gonna go bad - pumpkin. Anyway, here are a couple pics of Bradley with his current favorite toy. 😊🎃

And because he can’t go the the eye doctor at UCLA and not take a nap, he did that too. 😉

31for21 Blog Challenge Down Syndrome Awareness and Acceptance.

The Wonder Game

 October 25, 2022

I used to play the wonder if game in my head a lot. For the first couple years of Bradley’s life I would find myself walking that path whenever I saw my nephews or saw a kid Bradley’s age doing the typical things they do. Or when I had the rare but Blessed chance to hold a new baby and get them to coo, something Bradley didn’t do, but was one of my most favorite things that the girls did. 

And I’m not saying that I’m completely over the wonder if game - in fact, I find it happens a lot right now. And I did sometimes wonder what life would be like if Bradley hadn’t been born with an extra chromosome, but the fact that he beat the odds to be born at all, is a significant reminder that we should just feel Blessed he got here. No, my wonder if game isn’t about the chromosome itself. My wonder if game is more about me wondering what his life would be if he hadn’t been born sick. Where would my little boy be if he hadn’t had such a poor digestive tract that it almost killed him. Where would he be if we hadn’t lost something every time he had to be sedated for some incredibly dire surgery? Would he have his voice now? Would he be stubbornly independent rather than just stubborn? Would he be able to navigate his world more efficiently and not need someone to help him every step of the way? Would we have felt we could have fought for inclusion with enough evidence that we would know that Bradley could handle it, would handle it, and thrive within it as so many other kids with something extra special have and do daily? 

Instead, we continue to try to help him find his voice. We keep trying to bridge the gap between him and us as we try to read his signals, his moods, his symptoms, sometimes it feels like even his mind - so that we can know if he’s in trouble or sick, if there is something he just wants or needs, or if he’s just not feeling like being around us, or maybe that he wants us around him. I sometimes wonder if that little boy, without the surgeries, would have been the young man that could live independent of us, or maybe with a care provider to watch over things… or a group home. Or even just a part of my home with more independence than dependence on us to see to his every need. 

Right now, I don’t watch a lot of older people with Down syndrome and think - that’s going to be my Bradley someday. Instead I see them and I have to stop and I wonder - is there going to be a time when Bradley will be more like some of his peers that are handling parts of their lives? When he was a baby they told us he’d never leave us. And then they changed that to he’s probably going to live in an assistive living situation, and not with us. Now, I think we anticipate something in between all of that. 

Although the girls are still in residence, I can feel the nest starting to thin a bit. And we know that they are going to make their way out sooner than I like, maybe later than they and Dad want, (just kidding - not getting a huge sense of urgency from any of them) but the reality is when not if. And once that happens, I will find myself parts very sad, parts very proud, and parts still a mom with a full nest as Bradley will likely still be in it. And as our babysitters might move away - or just start living their lives or some such nonsense, I will lose some of the freedom I get when they can watch their brother so Eric and I can have a date night, or anything along the lines. These are real world problems! 

And I was thinking that I might always have to make his meals. Although he is savvy enough that given some practice he’ll be able to use the app and order pizza for dinner. Considering he went on a ten minute hunger strike at school today for lunch because he really wanted pizza and mom packed him a sandwich… I can see this being a real potential in his future. I hear there was great protesting involved. I am thrilled that he is so vocal and adamant in his choices and letting us know that pizza is the thing… but, protesting is not great. Eventually, his stomach required food and regardless of the lack of pizza in his container; he relented, eating his most yummy turkey sandwich. 

Bradley arriving with an extra chromosome was a shock and it definitely took some time to adjust our thinking. We had to grieve the baby we didn’t get so we could take the time to fall in love with the one we got instead. And we most definitely did. I never wonder if I love Bradley, if I would have loved the kid he might have been - with or without the extra chromosome, sick or not…but sometimes I hear his voice so seldom that when I do, I realize how sweet it is and how I wish we could hear it more often. And I can’t help but wonder what that might be like. 

31For21 Down Syndrome Awareness and Acceptance. 

On Repeat

 October 24, 2022 

Bradley doesn’t have a lot of language. He has some pretty good receptive understanding, and if you take the time to repeat, he’s pretty coherent when you make him repeat you word for word, one by one. Sometimes he’ll pop out a word or a few unprompted, but he doesn’t have a lot of spontaneous language. Hence, Speech Therapy. There are times at Speech that he gives them so many words - meanwhile, at home we only ever get a few words at a time. 

The world went nuts there for awhile; still kind of is, and he spent nineteen months staring at people whose mouths were covered by masks. And we tried to fill the gap of language loss, but it has been a struggle. But then when the masks came off, Bradley noticed the difference immediately. When the masks came off, he was fascinated by their absence and once again seeing mouths. Within a couple weeks, we were getting double the amount of words and better enunciation. It was pretty exciting. I couldn’t figure out the sudden burst until a few months ago when I realized he was staring more at everyone’s mouths. 

So that was exciting. He’s repeating words more and more at school and they tell me he’s starting to repeat words in one of their reading songs - as in, someone heard a little voice trying to sing along to the words in the song and they all realized it was Bradley. 

At home here, he listens to the Wiggles, or Scooby Doo, and he tries to copy the sounds in the music. He’s not really articulating much at all, but he’s matching tones. The closest we got to words we all could understand was to Curious George and the song about Spring in the movie about Spring. I’d tell you the name, but there are too many for me to keep track… Bradley could definitely tell you. Anyway, the repetition of the word “Spring” was perfect for him and there were times we could even understand the actual word spring. 🥰 Best thing to ever hear!! 

Knowing that he is constantly trying to repeat what he hears, I try to be really careful what I say around him. During baseball season I sometimes cringe when the air turns blue and wait for Bradley to start repeating some of that blue. But he hasn’t yet. 

What has he done? He repeats his mom. Never fails. I try to always keep it clean, especially around all my kids. But as soon as something slips one of them always picks it up. 

Tonight, I’m trying to get Bradley settled down for the night. He has his CPAP mask on and he’s drinking his juice. But he keeps adjusting and readjusting his nasal mask so that it keeps ending up off his nose, so then I keep putting it back on, and then back on again. I finally look at him, tell him to knock it off. He laughs at me. So I tell him, “You’re a Turkey Butt.” 

Immediately, he grins as he says “Turkey Butt.” 

Argh!!! Why is it always me he copies? And why isn’t it the useful stuff? Nope…. He waits for Turkey Butt. 

I do have to say, when it comes to spontaneous language, my boy is the most polite kid around. He says “please” and “thank you” without prompting. So I guess I’m just waiting for him to say: “Please Turkey Butt, Thank You.” If he ever says that I’ll probably fall out laughing. He ever says that to one of his sister’s and I might just die laughing. Crazy, funny boy! 

So yeah, we‘re always waiting for the words Bradley says and listening to all the ones he doesn’t say now. And this boy has a lot to say. 

31For21 Blog Challenge Down Syndrome Awareness and Acceptance. 

Planning the Plans

 October 23, 2022 

As the month is getting closer to the end, things like the upcoming Christmas season start to brew in my mind. For the most part, Bradley is not a huge Christmas guy. I have tried to engage him with an advent calendar and I’ve tried the same little Christmas tree chart that Curious George uses in his Christmas movie….but he doesn’t always like the toys out of the calendar and the calendar I tried to do, I did the 25 days of Christmas - probably too ambitious for him. 

Last year, we put the Christmas tree up on Thanksgiving weekend, Sunday afternoon and Bradley was very excited by the tree. He helped drag it in, he wanted to pull EVERYTHING out of the boxes, and then put one ornament on it, and then proceeded to sit and supervise for the rest of that activity. I think this year we’ll probably put the tree up the day after Thanksgiving, if he can be excited by the tree, he can get excited about other parts too. So we’re going to look for Holiday events that we can take him to and this year we’re going to try to figure out how to get him to see Santa. He doesn’t do lines so well, but we’re going to do our best. Maybe more than once. He definitely likes Santa, he starts watching a lot of Christmas movies this time of year. I start pulling all of them up on his iPad and on the morning tv when we watch that. Plus, they are all starting to trend; if not now, then over the next weeks. I am hoping that with us continuing to expose him to the Season we can try to help him get more excited about Christmas in general. 

I’m going to try George’s chart again, but I’m going to be a good little mommy and copy it so when he looks at his, he remembers George’s. Maybe that kind of connection will click for him too. 

Which leaves us to the hardest part. What the Heck are we going to get Bradley for Christmas. He loves Scooby, Cars stuff, and he loves Magna-tiles. But he has so many Magna-tiles and lots of Scooby… well, as much Scooby as you can get these days as he’s not so popular anymore. And that makes me sad of course. But that also keeps me a regular at Cracker Barrel these days. For some reason, Cracker Barrel is still a Scooby Doo fan and they keep cycling through some different products. So I try to pop in and check the stock and hope to add to Bradley’s Christmas and Birthday presents. 

Yeah - his birthday is about two weeks after Christmas. Oh and his Dad, his birthday is two weeks before Christmas! These men in my life!!! Oh my gosh!!! So I am looking for the perfect gift for Eric’s Birthday, Christmas presents for Eric and the kids, and then Bradley’s birthday present. And in the meantime, I’m going to help my boy gather some understanding and certainly am hoping - Bradley has some fun and joy. If he is going to keep giving us joy, I really want to find a way to return just as much to him. 

For now, we’re trying to prep for Halloween. Maybe. Right now, I plan on getting Bradley checked tomorrow because his cough is making us nervous. I’ve been doing some research and I thought for sure that unless he had a fever he was good… now I am not sure that he hasn’t dropped something into his lungs that he just can’t shake free from. Tomorrow, we’ll make sure. Better safe than sorry for sure. 

Then when we get past Halloween, we get into Thanksgiving. And I work overtime to make sure that our table has a meal with everything that Bradley can eat and all I can get him to try. Feeding therapy has helped us to expand what hits his plate each year, and at Thanksgiving he eats a little more each time. Luckily, the girls are not as picky. Though they always remind me of their favorites and I always try to get them on the menu. God willing that never changes. 

For now, I’ll hit the Cracker Barrel shop this week and peruse their Scooby merchandise as long as I am not here at home with Bradley. Every day is a new and surprising adventure in our house! 

31For31 Blog Challenge for Down Syndrome Awareness and Acceptance 

Cheering for the Mighty Six

 Saturday the 22nd 

I was thinking back in the last year and some of the good and the bad that we had in our lives. I think the trip to Florida was just really good over-all. There are always going to be the downs and the challenges when you are driving from one coast to the other - something about getting through the challenges and seeing the joy and the positives let you know that the trip was more than worth it. There was a lot of talking to be had, a lot of sights to see and the realization that this is a very big country we have. It was the kind of trip we had wanted to take with the kids for quite a few years which is why we tried as hard as we did each year to go. We really wanted the girls to see some of the beauty in the country, and get some sense of how living in other places for something like College would be a pretty great thing. But for whatever reason, it was never meant to be until it just was. After our trip to New Hampshire in the Spring, Sydney was pretty sure where she wanted to be and so she stayed home for College. After our trip in June, they both see the potential of Grad/Nursing school happening somewhere other than here as a possibility, not a tragedy. 

Anyway, the day we got to our hotel in Orlando, we got a message from a parent saying that one of the girl’s who was on her team was sick and didn’t get on the plane from LA. This only surprised the coaches and a couple of the parents. She had been openly telling the team she didn’t want to go to FL so wouldn’t be going to FL. Most of the team and families learned after they landed in Florida, we were the only ones who drove… so definitely no turning back. 

We were down two girls now. We already had a senior that refused to come and her parents let us all know early on. Now we were done the one that wasn’t going to come but her parents were telling everyone - No, we’re coming. Down to seven with one girl who brought her sister so that we had eight. We went 3-0 day one and that night the sisters backed out too. On Day two we stepped into the court with six players. My Libero was hitting and blocking and our middle blockers were passing and digging. We went 0-3, but those were all close losses and we were very close to winning, but w they were still trying to figure out how to play new positions. Day three, we watched the girls start to settle into their new roles and start to get things under control. The girls went 2-1. 

By Day Four, the girls were pretty beat up and very tired. Backs, shoulders and knees were starting to ache. For her part, my kid had hit her hand on the floor so hard she had a massive bruise on her palm and pain down her pinkie. After a walk around the convention center I found the trainers and we had them tape her hand up to give her some padding and support. 

Day Four is Play-off day. Lose and you’re done. The losers have to ref the next game and then they get to leave. We usually start early, but for some reason we had a late start. After waiting around, the girls managed to win the first game. We families were excited and a little surprised. We knew they had the skill and talent, we just weren’t sure they could play through the exhaustion. And then, in the second game my girl went on a serving run that hyped them up and carried them through to a win. She was so cute, she told me that as the girls were huddled after that win, they were looking at each other like - “so, are we doing this then?” And they all were looking at each other going, ”Uh, yeah - I think we are”.

Every game, the girls came together and there was always a couple girls who would come up big and be the spark for the others. There was concern about flights to catch and we were all worried that the girls would come this far and have to forfeit because one girl had to catch her flight. But she put all the girls (and us parents) at ease when she laughingly told them that her mom said to just play, they’d worry about the flight later! Haha. Go Mom! 

Final match and the fourth game of the day. Watched Sydney have a couple off passes and was wondering what the Heck… my kid may get tired but not sloppy - she trains more and harder than any other player on the team. But then I looked at her wrapped hand and remembered - oh yeah, her hand. But she got a block, had a couple hits and even a kill. She served well, and worked harder to ignore that hand and pass better. And when the last ball fell for the last point - our mighty six were the ones cheering the loudest and the proudest in a relatively quiet convention center. We weren’t the last teams playing, but we were pretty close to it. 

The girls won first place in the Pearl Division. At the end of the day, they each came away with ribbons for them and a plague for their Club. When we left for Florida, we went hunting for medals. Things went sideways and maybe the girls didn’t have medals put around the necks, but they were handed ribbons and an announcer made the shocking revelation that they took their ribbon with only six players. That’s impressive and definitely one for the memory books. In a year with mostly disappointments, my girl walked out of that convention center with pride in all that she and her team had overcome and achieved together. 

Eric and I hugged each other tight as emotions rode high and hard as we took a few minutes to accept the end of Club Volleyball in our house. From the weekends that were dedicated to volleyball and all the events that were scheduled around it…that ended that day and it was as sad as it was full of pride and love for the girls that brought us on that journey. 

And so now time for new adventures and different journey’s. 

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance. It’s always about the journey.  

Hello Friday!

 It’s Friday! 

Finally Friday! I used to think that we all equally anticipated Fridays, but I don’t think anyone in the house appreciates them more than Bradley does. Thing is though, he doesn’t truly understand the concept. But he absolutely understands and appreciates the joy of waking up on Saturday and Sunday and not being processed through the school routine. He certainly starts to feel it towards the end of the week. 

I would say that Wednesdays and Thursdays are the best days of the week for the whole routine process. Monday is a shock, like every week! Tuesdays are a toss up, he sometimes is cool with it and sometimes not. I have to walk his stuff out and set it on the sidewalk, Bradley usually follows me out the door at that point. When he is struggling, this is my second to last tactic to get him to comply with me needing him outside for the bus. My last shot is giving him a cookie once he gets all of his school routine done, that usually works to get him to finish up. If we’re early, these are the let’s go outside and sit on the step days. 

Wednesday is usually okay, he’s willing to come out and eat his breakfast and then he’s usually ready to go out and sit and wait for the bus. 

Thursday he is settled into the routine and walking from one step to the next. He isn’t happy about doing any of it - more like he is resigned to it happening. Everything gets done at a slower pace, he’s tired and actually will climb into my lap to wait. Yesterday, he dropped his head and took a small nap, but on Thursday’s, we don’t usually sit outside to wait.  

Friday. Friday is a rough one. By Friday, Bradley is absolutely done with this whole routine and the continued need to keep going outside and getting on that bus. These are the biggest fights and require the most finesse to get Bradley taken care of, dressed, fed and have all his stuff together and done to get to the bus  on time. 

Luckily, today the bus was a little early this morning. Considering we were at the end of my ability to eek the last of his compliance from him I was able to walk him straight out to the bus. 

The good news, every afternoon my boy gets off the bus with a big grin and is happy to see me. His book tells me that most days he has a great day too. If Incan get him to stop fixating on the Speech iPad for the picture taking, we might have more peaceful afternoons. He knows it’s in his school backpack and he tries to race me to get to it before I can get it and whisk it away. The imagery is funny and the events are relatively humorous most days. Sadly at least one day this week he didn’t agree with me at all and we had a horrible melting that led to couch time with a weighted blanket and mom until things settled down inside of his little head and he could regulate life again. It wasn’t the best afternoon, but he was calmer and back to his usual self. No potty accidents, are a complete and full dinner and had no issues with bedtime. A melt and a remold, sometimes that all we need. Bradley’s sweet brain just makes his world implode and everything stops until it can start again. Us adults that are supposed to have it all together, we don’t get to melt and then remold unless we do it privately or are willing to risk public ridicule and judgement. I’m sure Bradley would face the same if/when these things happen in the public eye, but out there it is irrelevant to me what others are thinking, saying or seeing - his needs in those moments will be the only ones that matter. And honestly, people expect it of him, which makes me so very sad for him, especially as we haven’t had one of these meltings happen in public. But life is ever changing and overwhelming in its intensity - I’m sure it’ll be coming. 

For now, we’re just going to work on getting through each week… especially the occasional overwhelming afternoons. 

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance 

A Photo Drop 🥰

October 20, 2022

So here’s my rant. Facebook used to have those little frames that you could put around your profile pictures that let you celebrate special times, seasons etc. I used to find my favorite pictures of Bradley, with his sisters, Eric and I, and do a month worth of frames around them to celebrate Down Syndrome Awareness month. While I have no desire to get into any kind of debate, I do encourage you to try putting a frame around one of your profile pictures with a cause that you believe in or something special you’d like to celebrate. If what you love is there to represent you, great. But I think our world would be a better place; if in the bigger picture, we could look at those frames and realize that there are only a few and the lack of other options are a true embodiment of how far we have distanced ourselves from each other. Group think is being encouraged and individuality is being banned and it makes me sad. 

So my friends, I am posting 38 of them from the past eleven years for your perusal, and I hope enjoyment. Oddly, this takes longer than the writing…now you know why my posts lack a lot of photos in them. Haha! So, yeah it’s been a thing I do…and I am so sad that the powers in control believe that my son and his community are not worth the recognition for a special month to celebrate who they are and what they contribute to this world. The world is better with Bradley in it, without the light that shines in our special needs community we are self-absorbed, selfish people who don’t take the time to see someone with a different ability let alone see and share a sweetness in life. We are better humans when we love like Bradley, when we forgive like him and nurture others the way he tries too. We weren’t special so we got him; rather Bradley is special so he choose us to be in his life. Being chosen by Bradley is a pretty incredible gift. Open your world to someone like Bradley and your world will unfurl before you like a butterfly testing new wings, bringing you the kind of joy we all deserve, the kind of challenges that make us work harder, and the rewards from it that make life all the more sweet. 

31For21 Down Syndrome Awareness and Acceptance. Life is better because of Bradley and those like him.