And just like that, the month has come to an end.
This was such a fast moving month. With so much on our plate, the addition of Bradley being sick for most of the month just seemed to fast forward everything anyway. Halloween, which is so fun and such a big day in our house, was a quiet footnote that was bookended by stress as we worried about the smoke from the fires and the wind, and then the stress of looking up and knowing that the smoke over the hill represented a whole other trouble coming.
And it is the biggest fire burning right now. Last night, as we watched the orange glow as it kept burning up the mountains, I was glued to my twitter feed and the news, trying to keep track of the fire map and evacuation map. No, the fire was not really threatening us, too many houses between us and the fire. But embers are embers and they can fly anywhere in the winds that we have had. But mostly, it was the concern of where the smoke was going to go. Would it turn and flow right towards us, or turn away? The last update I read before I went to sleep, the article was talking about the fire possibly turning south...we were south. In that moment, I felt fear. But I’m an educated woman and know to use more than one resource... I did manage to sleep last night, whenever I wasn’t hanging out with Bradley.
The kids were all home today. The girls’ High School is a only a few miles from the southern part of the fire, with farms and houses in between...but still, I would have kept them home. It was pretty funny, at 1:55 pm we got the call that school would resume Friday. Then, the fire started at 6:13. First call was the notification that the fire was being monitored, the school cancellation came in at 7:30. Anyway, the last thing we need is a vast change in direction and me trying to get to them or waiting to see if Madison gets her sister and gets them home. Bradley’s school cancellation came in late, but he wasn’t going either, risking the air wasn’t worth it for sure.
So we had the girls prep their go bags. And I started making lists in my head of things to do. We were pretty sure we weren’t going, but if the winds shifted, we’d be part of a voluntary evacuation if it came up and if the winds were against us, we’d go too. But mostly, we felt that if the girls were prepped to go, then they could keep Bradley occupied to give me a chance to prep and pack if necessary. And maybe, they would be calmer about it.
Despite drone operators downing the water drops from the air support, responders were able to keep the fire in the containment box they were hoping to establish. We’ve seen some line jumping today, but despite zero containment, responders have held the lines and kept the fire where they want it. Trying to get it out while in those lines is the toughest part. So we pray for the fire fighters holding that line, the people in the way, and the hope that more can be saved then lost.
As for us; at our house, the winds were milder, the smoke heading away and the skies were so clear. Bradley chose to visit with me at 11:00 last night, and again at 3. And still felt that our day should start at 6:30 this morning. But similar to school, there is much to be said for an early morning nap. Because he is sneaky, he went to Sydney’s room and stood next to her bed. When she asked if he was going to lay down with her, he turned and left the room. Then, while I was prepping his medicines, I didn’t see him and went looking for him. He was laying with Madison. Seeing that they were chatting, I went back to finish his medicine. As I sat and waited for him to get bored with hanging out with Madison, I ran through the latest news on the fire.
Finally, I looked up and noted how much time had passed. Hmmm.... worried he’d snuck out of her room and past me, I walk back down the hall. He didn’t get bored; in fact, he got too tired to get up. He was sound asleep, snuggled up with Madison and slept until after 9. Good grief! Why couldn’t he have just stayed in his own bed, mine, or even toddled on down to her room and climbed up there and left out the middle mom? Ugh!
We spent the day playing blocks and tiles. I did more laundry than I thought we owned collectively and listened to the girls as they tried to help each other navigate the world of dating in a digital world, complete with showing emotion with punctuation, and using the smiley face with a ‘ because that indicates a different level of emotion. For Heaven’s sake! I am so grateful that my dating years were completed with nothing more than a pager and brief use of a my first cell phone. How they are doing it now is just, wow. They are braver than they realize, smarter than me, and flexible in ways that they don’t understand. Their roots are deep and solid, but like Willows, they bend in the wind and stand through the storms. I’m proud of them!
As for my boy? He’s pretty great. He may not actually be moving towards potty training, but he is responding to the need to take care of diapers and meds by pausing and then running down the hall. This morning, I told him to go get his stool so he could climb up for his diaper and meds, so he turned and left his room, went to mine and grabbed his stool and carried it back to his room and then climbed up on his table. Understanding. Comprehension. Compliance and Follow through. It was AMAZING! So you bet, I am so proud of him!
Life with Bradley is a gift. But then; when you are Blessed to have children, and you let them be the joy they are meant to be in your life, they are all a gift. I look at my oldest; knowing she is close to leaving the nest, and her life flashes before my eyes from baby to Senior in High School and so many moments along the way. My Sophomore is not far behind, and I find I am having similar reactions when I look at her too. Hazards of having them so close together. Sigh... And my Bradley, growing up fast and right now, developing in leaps and bounds. I miss them as babies and I miss them as toddlers...but I believe that’s the job I applied for. Their job is to grow up and grow strong and change the world. I just love them along the way.
So my friends, here ends the 31 For 21 Blog Challenge for Acceptance and Awareness for Down syndrome. You see, life is what you make of it. Play your cards from the heart and the path will lead where it is meant to lead. Your kids get sick, they get healthy, they are brilliant or they aren’t.. an extra chromosome allows you to prep ahead of time so the valleys aren’t stark and bleak, but rather filled with flowers meant to make your way go a little better. It’s not easy, but it’s worth it. Being given something extra to go with your ordinary? Pretty epic in the grand scheme of things. When you are down, hit your knees and pray...but then get up and keep walking. Whether there is an extra chromosome in your family or not..life is about standing up and keeping walking. Thank you for joining me on this monthly journey about this little family and our little extra.
Until next time sweet friends!
Friday, November 1, 2019
Wednesday, October 30, 2019
Fire Watch. Yep, Again.
So I’m introducing Sydney to “Downton Abby”. There are so many questions to be answered, I had no idea how hard it would be to introduce her to English Aristocracy. But she is taking European History so in an effort to help her wrap her brain around it all; here we are, me always enjoying it and her asking me a million questions about it. Someday, when she is older and have children of her own I am hoping that she will pass along these moments, and I’m hoping those moments are good memories.
The rest of the day was spent on fire watch. We already were on a half day with the High schoolers because of the wind and poor to dangerous air quality. Bradley was to be at school the whole day, which was to be until 1:15. So I put him on the bus and then came in to watch the news on the latest fire that is a little closer than we’d like. First came the phone call that Sydney couldn’t get her retainer today because her orthodontist couldn’t get to the office. We’ll try again tomorrow morning.
No sooner did I get off the phone, when there was a knock on the door. Sure enough, the bus was back and his aide was knocking to let me know that the bus was called and told to take all the kids back home. So off I went to fetch Bradley off the bus. He and I spent the day together. At one point, he and I got all of his blocks and built the coolest, and strangest looking house possible, with a door in the attic and a window on the back of a lego fire truck. When he grew bored, he decided to throw all his blocks and tiles..so it was time to clean up. When I told him, he got down and helped me clean up all his tiles and blocks. After all that, he wanted his movie instead of any more of that hard work.
We had a pretty good afternoon, he and I strongly disagreed with Bradley’s insistence that he should go outside, and I felt strongly that his being outside would only effect his health detrimentally. We argued he and I, and there might have been some crying and yelling - we don’t really need to point fingers about that, but we got through it in the end.
Sadly, the fires and the weather will prevent the kids going to school tomorrow, and no costume parade for Bradley for Halloween. And more than likely, he and I will have further disagreements regarding me not letting Bradley go outside to play. The worst though, is knowing that the winds will likely keep Bradley from being able to go Trick or Treating this year. We will look into the hope that we can take him to the Mall or something to find some place where he can practice his treat gathering.
I guess time will tell. For now, Sydney and I are busy delving through the corridors of Downton all while waiting for Madison to return home from her date. Yes, she had a date tonight to go to a Haunted House. Hmm, can’t wait to hear how the evening has gone. 😁. Downton and date details...what a great way to end a night.
One more day in the Challenge. Happy 31 For 21 Blog Challenge from a very Windy City with such terrible air quality. Good night all!
The rest of the day was spent on fire watch. We already were on a half day with the High schoolers because of the wind and poor to dangerous air quality. Bradley was to be at school the whole day, which was to be until 1:15. So I put him on the bus and then came in to watch the news on the latest fire that is a little closer than we’d like. First came the phone call that Sydney couldn’t get her retainer today because her orthodontist couldn’t get to the office. We’ll try again tomorrow morning.
No sooner did I get off the phone, when there was a knock on the door. Sure enough, the bus was back and his aide was knocking to let me know that the bus was called and told to take all the kids back home. So off I went to fetch Bradley off the bus. He and I spent the day together. At one point, he and I got all of his blocks and built the coolest, and strangest looking house possible, with a door in the attic and a window on the back of a lego fire truck. When he grew bored, he decided to throw all his blocks and tiles..so it was time to clean up. When I told him, he got down and helped me clean up all his tiles and blocks. After all that, he wanted his movie instead of any more of that hard work.
We had a pretty good afternoon, he and I strongly disagreed with Bradley’s insistence that he should go outside, and I felt strongly that his being outside would only effect his health detrimentally. We argued he and I, and there might have been some crying and yelling - we don’t really need to point fingers about that, but we got through it in the end.
Sadly, the fires and the weather will prevent the kids going to school tomorrow, and no costume parade for Bradley for Halloween. And more than likely, he and I will have further disagreements regarding me not letting Bradley go outside to play. The worst though, is knowing that the winds will likely keep Bradley from being able to go Trick or Treating this year. We will look into the hope that we can take him to the Mall or something to find some place where he can practice his treat gathering.
I guess time will tell. For now, Sydney and I are busy delving through the corridors of Downton all while waiting for Madison to return home from her date. Yes, she had a date tonight to go to a Haunted House. Hmm, can’t wait to hear how the evening has gone. 😁. Downton and date details...what a great way to end a night.
One more day in the Challenge. Happy 31 For 21 Blog Challenge from a very Windy City with such terrible air quality. Good night all!
Tuesday, October 29, 2019
Stressful Well Child! Ugh
Spent two hours at the Pediatrician’s office today. The first fifteen minutes were spent waiting, then we got called back. He did his weight and his height, and then actually let the nurse take his blood pressure. Then she asked the other nurses if he could do a hearing test, and they said no. Then she comes back around the corner to me, “Can he do the hearing test?” Cue my “Seriously?” Face. I’m fairly certain that I managed to drop my face so the girl couldn’t see my reaction, and just merely shook my head. Then she asked if he could do a vision test. I told her he doesn’t say his letters. She’s like, how about these pictures, will he say house and stuff. Um, no. My non-verbal son will not identify your tiny black and white barely recognizable pictures. Make them bigger, in color and with some actual detail and he just might. But not today. I just said, “No, not really.” I’m trying to be nice because she is new. Like this might be her first job new. And the thing is this; sure it’s a bit frustrating, but I know what’s coming for him and me, and it’s just not worth the energy expulsion. Trust me!
We get to the room and she wants me to get him down to his diaper...which is fine, except the doc takes another twenty minutes because he lets me know he’s running a flu test and doesn’t want to have to leave Bradley once he comes in. So we hang out, but by the time the doc comes back in, we have a onesie back on and Bradley is pleading his case that we should just go home and come back, like never. But I am pointing out to him it is just a Physical AND, his ear is dripping fluid...so probably an ear infection, so... we gotta stay.
In the interim, we hear another kid screaming and crying...like super loud. Like, maybe that kind of place should consider a tad bit of increased soundproofing in the rooms... so that maybe my guy doesn’t start crying because your kid is screaming. It’s just a thought. So Kid in the other room keeps screaming - mortal terror screaming, and I am feeling a bit uncertain myself. When they finally leave, turns out SHE - says she’s never coming back, and her sister tells their mom, she isn’t ever coming back. I desperately am trying to not laugh out loud because my guy is terrified by the screaming and jumping at every sound now. Sigh, lots of back rubbing to calm him down. He settles down back on my lap, just resting. When his doctor walked in, he jumped out of my lap turned around and burrowed into my lap, arms tightly around my neck. Sigh...
So doc and I talk about Bradley, and Bradley relaxes again. He even allows for all kinds of testing, eyes and such...but then doc wants to check out that ear. Oy! It’s like wrestling an octopus. Dear God Almighty. I am exhausted, and though I had the heavy lifting of holding Bradley down, his doc was great about contorting into position in order to get his ear cleared out enough to see in. He saw fluid. As he got himself back together, I’m thinking “fluid?” I didn’t say it, but he saw it and laughed. “We’re doing drops.” He blows out a breath, “He’s strong.” I just nod my head, “Yeah.” And laugh too.
So we finally leave at 4:20. Happy that Bradley is growing as he should, all his labs have looked good and he’s on schedule to get into all his other necessary medical appointments. The day ended with ear drops in and snuggle time with Dad. We’ll see if that screaming kid or his own screaming follows into his dreams, I’m hoping that he is too exhausted to care. I guess time will tell.
It’s okay. We have a little boy growing into a big boy, he has an ear infection yeah, but it’ll go away. He has to put a little weight back on; cause he dropped a bit, but that Roseola rash was no joke. And his new doctor is getting to know us pretty well, he is relaxing around us and we are having conversations. He’s always been nice and earnest, but he gives me more information now, and trusts me with more complicated explanations. We miss the pediatrician we had, we made a great team. It’s a relief that we have created a new team and we feel pretty good about it.
It’s been a long day for the 31 For 21 Blog Challenge. But my boy is doing well and that’s all the matters...even if mom is trying to decide what she needs more...an adult beverage or chocolate... hint - probably chocolate! 😉
Night all, thanks for checking in.
We get to the room and she wants me to get him down to his diaper...which is fine, except the doc takes another twenty minutes because he lets me know he’s running a flu test and doesn’t want to have to leave Bradley once he comes in. So we hang out, but by the time the doc comes back in, we have a onesie back on and Bradley is pleading his case that we should just go home and come back, like never. But I am pointing out to him it is just a Physical AND, his ear is dripping fluid...so probably an ear infection, so... we gotta stay.
In the interim, we hear another kid screaming and crying...like super loud. Like, maybe that kind of place should consider a tad bit of increased soundproofing in the rooms... so that maybe my guy doesn’t start crying because your kid is screaming. It’s just a thought. So Kid in the other room keeps screaming - mortal terror screaming, and I am feeling a bit uncertain myself. When they finally leave, turns out SHE - says she’s never coming back, and her sister tells their mom, she isn’t ever coming back. I desperately am trying to not laugh out loud because my guy is terrified by the screaming and jumping at every sound now. Sigh, lots of back rubbing to calm him down. He settles down back on my lap, just resting. When his doctor walked in, he jumped out of my lap turned around and burrowed into my lap, arms tightly around my neck. Sigh...
So doc and I talk about Bradley, and Bradley relaxes again. He even allows for all kinds of testing, eyes and such...but then doc wants to check out that ear. Oy! It’s like wrestling an octopus. Dear God Almighty. I am exhausted, and though I had the heavy lifting of holding Bradley down, his doc was great about contorting into position in order to get his ear cleared out enough to see in. He saw fluid. As he got himself back together, I’m thinking “fluid?” I didn’t say it, but he saw it and laughed. “We’re doing drops.” He blows out a breath, “He’s strong.” I just nod my head, “Yeah.” And laugh too.
So we finally leave at 4:20. Happy that Bradley is growing as he should, all his labs have looked good and he’s on schedule to get into all his other necessary medical appointments. The day ended with ear drops in and snuggle time with Dad. We’ll see if that screaming kid or his own screaming follows into his dreams, I’m hoping that he is too exhausted to care. I guess time will tell.
It’s okay. We have a little boy growing into a big boy, he has an ear infection yeah, but it’ll go away. He has to put a little weight back on; cause he dropped a bit, but that Roseola rash was no joke. And his new doctor is getting to know us pretty well, he is relaxing around us and we are having conversations. He’s always been nice and earnest, but he gives me more information now, and trusts me with more complicated explanations. We miss the pediatrician we had, we made a great team. It’s a relief that we have created a new team and we feel pretty good about it.
It’s been a long day for the 31 For 21 Blog Challenge. But my boy is doing well and that’s all the matters...even if mom is trying to decide what she needs more...an adult beverage or chocolate... hint - probably chocolate! 😉
Night all, thanks for checking in.
Monday, October 28, 2019
Dirty Face and Giggles
It’s the last Monday in October, it’s the last Monday in the Challenge. It wasn’t a bad Monday, kind of quiet actually. And that’s a nice break.
In some ways, Bradley is just like any typical little boy. Dad is the center of all things cool and that being the case, where dad goes he wants to go too. Today, when Eric got home from work, he went outside to use the blower to get rid of all the leaves in Bradley’s turf, and the new pavers in our recently completed backyard. We didn’t get crazy creative back there, but we did get rid of most of the dirt. I know; some think that’s a horrible thing, but for our needs, it is mandatory. Keeping Bradley safe is the Priority. If we keep him safe and we keep the space clean and nice, the girls will bring their friends too. Our plan is to get chairs out there, maybe a table, and a fire pit. Then the family can sit out there together on the good nights. The girls and their friends, or Eric and I after putting Bradley down for the night, and if they are nice the girls can join us too...we’ll see. Just options.
So back to after work today. Bradley sees Eric outside, and like a good dad, when Bradley tries to join him, Eric makes sure Bradley’s shoes are on the correct feet and lets Bradley trail along with him. From what I could see, Bradley was the line boy, making sure the cord didn’t get tangled. Or maybe tangling the cord? Perhaps trying to unplug the whole operation? Who knows really. Whatever, it worked.
Once the blower was put away, I walked outside with them and the first thing Eric told me: “He needs a shower.”
I took one look at Bradley and started laughing. Yep, he did. Filthy hands, filthy face, filthy body. I look at Eric, he’s clean. Before I can ask he starts chuckling: “He ran in front of the blower, took a shot from the head down.”
Bwahaha. Cracked me up. All boy and all dirty, just as he is supposed to be. But I will say, he wasn’t overly excited to be so dirty, he kept trying to clean his hands and trying to clean his face by wiping it on my shirt. Then rubbing his hands through his hair to dislodge the dust. But despite all that, he kept smiling and giggling, so I think it was worth it for him.
He didn’t object to the shower that followed, or the loss of the leaf that was down in his shirt either. Instead, he got cleaned, he got dressed and played for a bit before he decided to try chocolate pudding AND Chips Ahoy cookies. He ate all the cookies and half the pudding. It’s a win in my book.
So yeah, not bad for a Monday. Not bad for a break in the winds for Bradley to get some play time with Dad, even if Bradley was the only one thinking it was play time. 😉
Happy Monday, night all.
31 For 21 Blog Challenge. Because some days are just good days, for no other reason than they just are. ❤️
In some ways, Bradley is just like any typical little boy. Dad is the center of all things cool and that being the case, where dad goes he wants to go too. Today, when Eric got home from work, he went outside to use the blower to get rid of all the leaves in Bradley’s turf, and the new pavers in our recently completed backyard. We didn’t get crazy creative back there, but we did get rid of most of the dirt. I know; some think that’s a horrible thing, but for our needs, it is mandatory. Keeping Bradley safe is the Priority. If we keep him safe and we keep the space clean and nice, the girls will bring their friends too. Our plan is to get chairs out there, maybe a table, and a fire pit. Then the family can sit out there together on the good nights. The girls and their friends, or Eric and I after putting Bradley down for the night, and if they are nice the girls can join us too...we’ll see. Just options.
So back to after work today. Bradley sees Eric outside, and like a good dad, when Bradley tries to join him, Eric makes sure Bradley’s shoes are on the correct feet and lets Bradley trail along with him. From what I could see, Bradley was the line boy, making sure the cord didn’t get tangled. Or maybe tangling the cord? Perhaps trying to unplug the whole operation? Who knows really. Whatever, it worked.
Once the blower was put away, I walked outside with them and the first thing Eric told me: “He needs a shower.”
I took one look at Bradley and started laughing. Yep, he did. Filthy hands, filthy face, filthy body. I look at Eric, he’s clean. Before I can ask he starts chuckling: “He ran in front of the blower, took a shot from the head down.”
Bwahaha. Cracked me up. All boy and all dirty, just as he is supposed to be. But I will say, he wasn’t overly excited to be so dirty, he kept trying to clean his hands and trying to clean his face by wiping it on my shirt. Then rubbing his hands through his hair to dislodge the dust. But despite all that, he kept smiling and giggling, so I think it was worth it for him.
He didn’t object to the shower that followed, or the loss of the leaf that was down in his shirt either. Instead, he got cleaned, he got dressed and played for a bit before he decided to try chocolate pudding AND Chips Ahoy cookies. He ate all the cookies and half the pudding. It’s a win in my book.
So yeah, not bad for a Monday. Not bad for a break in the winds for Bradley to get some play time with Dad, even if Bradley was the only one thinking it was play time. 😉
Happy Monday, night all.
31 For 21 Blog Challenge. Because some days are just good days, for no other reason than they just are. ❤️
The Seasons of California - All Five...
Unfortunately, we have the strangest seasons in California. We have Spring which is part beautiful and part mostly socked in in the coast with fog - it has its own name, June Gloom. Or at least it was June when I was a little kid. Now it extends from late April to end of July. By the end of July we are starting summer which is weird to have overcast heat. Summer extends all the way through to October, because it takes a small break to give us one nice week and we think it’s Fall but it’s not... cause it gets hot again... until we get a brief break of fall weather, and finally some winter. A good winter lets us pull out parkas for a brief reminder of how much we love our jackets and wish we could wear them longer... in a day, in a season. Even our coolest days tend to warm up. So we’re later people, lots of layers. And then somewhere along the way we get Fire season. The way the wind blows in this state you have to hold your breath when it starts and just wonder where the fires will hit and for how long. The last three years it’s been a month earlier each year. For us the worst was in December. Last year was November and then this year, October is hitting areas hard.
We live in a small bubble. Oddly, we are mostly protected. Three years ago we were completely surrounded by fire in three sides and water on the fourth. It was disconcerting to say the least. But no fire threat really. But like any bowl, things pour in. We were inundated with smoke and dangerous air. Three years ago, we put in AC. And thank God we did. We can keep that giving the kids safer air to breath when they are in here. My oldest spent exactly ten days in school in December that year... the other two maybe two days more. It was incredible. The early Christmas decorators were the only decorators. The fires started Dec 4th and raged on. After that, Christmas was a quiet little celebration of sheer gratitude for those is if not affected by anything but smoke.
We were not put under evacuation orders, but we were getting into a closer area of suggested evacuation because of air quality. We watched and waited. Keeping Bradley occupied while I packed was a task indeed. I put the girls in charge of brother while I ferried our medicines. I started with Bradley’s, then Sydney’s, and then Dad’s. Enough to get them through for a month, some are three month supplies in one bottle which is even better. Even Express Scripts can find us before the need gets dire if we had to bug out.
Once meds were done, it was the medical equipment. Feeding pump and nebulizers. I could bolus everything Bradley needs, but what if the changes and stress stops god intake completely... his pump, pole for the feeding pump, his pump backpack (for when he wears it all), and the bags - two different sizes. And then I set aside the cases of his food. Yes, I could buy this at the store but when you are evacuating, you can’t be certain there will be opportunity or supply. Last, I added his water and his juices. Why juices? His tastebuds back then were really dulled, even today he is not great at straight water, we’re working on it. But juice wise I try to get in extra vitamins as much as I can, especially the super Bs!
Then, it was the paperwork, stuff we had to have or have a harder time replacing. Like Consular Certificates of Birth Abroad - we got two kids with those... that’s an Embassy request. Good reminder - need to get copies ordered. And then I had to stop and think. Jewelry. Of course... the sentimental value alone supersedes some of the actual values, but those were important factors too.
For the last part, I have the girls duffel bags and we instructed them to get three days worth of clothes and get them in the bag. Then I checked their bags, lots of room. So then it was extra clothes and special personal items. For the most part they were really good about it, I only kicked out a couple posters and some random items that were easily replaceable to make room for more important items like contacts and other necessities like glasses... and a toothbrush, a hairbrush... a jacket, a couple sweatshirts. Knowing how Bradley can go through clothes, and luckily his still small size - almost everything of his fit in his bag... a good thing.
We never got to the point where we were loading...just to staging. Bags were kept against their bedroom walls where they were ready to be grabbed. The medical equipment was readily available for use, except the extra IV pole we have is always boxed and ready. Blankets folded and sitting on the back of the coach, always ready to be grabbed last.
From there we waited, ready to be ready to load. And the fires raged on and moved away from us. So instead of loading us up, we went and loaded up the van with essentials from the store- and we took them to donation spots to try to help those who had to rush out and had nothing. We did soap and shampoo, socks and diapers... tried to think of the things most needed and least donated. And as we handed them off we said a prayer for those in that need and a prayer of gratitude that we weren’t, that somehow things turned away from us and we could still be home. Safe from the fires and eventually, safe enough from the smoky air.
And now every year, we watch and we wait and we judge distance and smoke levels and are ready to do it all over again to prepare to get my respiratory compromised three out of harm’s way if necessary. Because we aren’t the ones that wait it out. We’re the ones that they say you should considering leaving and we would. And if the smoke filled air isn’t kept from inside the house - then we go. Taking chances with Bradley and Sydney aren’t an option. And if Dad hadn’t been safely at work almost on top of the water everyday - we might have gone anyway.
We were very lucky. Our struggle was keeping one active, little boy occupied at Home. So not a struggle...just a challenge. We were Blessed and watched over for sure.
31 For 21 Blog Challenge...there are no end to the extent and the amount of challenges in this life. Always watching these winds and these fires, and always praying for the safety of these fire fighters, first responders and silly news crews that just keep getting in the way. Sigh...
We live in a small bubble. Oddly, we are mostly protected. Three years ago we were completely surrounded by fire in three sides and water on the fourth. It was disconcerting to say the least. But no fire threat really. But like any bowl, things pour in. We were inundated with smoke and dangerous air. Three years ago, we put in AC. And thank God we did. We can keep that giving the kids safer air to breath when they are in here. My oldest spent exactly ten days in school in December that year... the other two maybe two days more. It was incredible. The early Christmas decorators were the only decorators. The fires started Dec 4th and raged on. After that, Christmas was a quiet little celebration of sheer gratitude for those is if not affected by anything but smoke.
We were not put under evacuation orders, but we were getting into a closer area of suggested evacuation because of air quality. We watched and waited. Keeping Bradley occupied while I packed was a task indeed. I put the girls in charge of brother while I ferried our medicines. I started with Bradley’s, then Sydney’s, and then Dad’s. Enough to get them through for a month, some are three month supplies in one bottle which is even better. Even Express Scripts can find us before the need gets dire if we had to bug out.
Once meds were done, it was the medical equipment. Feeding pump and nebulizers. I could bolus everything Bradley needs, but what if the changes and stress stops god intake completely... his pump, pole for the feeding pump, his pump backpack (for when he wears it all), and the bags - two different sizes. And then I set aside the cases of his food. Yes, I could buy this at the store but when you are evacuating, you can’t be certain there will be opportunity or supply. Last, I added his water and his juices. Why juices? His tastebuds back then were really dulled, even today he is not great at straight water, we’re working on it. But juice wise I try to get in extra vitamins as much as I can, especially the super Bs!
Then, it was the paperwork, stuff we had to have or have a harder time replacing. Like Consular Certificates of Birth Abroad - we got two kids with those... that’s an Embassy request. Good reminder - need to get copies ordered. And then I had to stop and think. Jewelry. Of course... the sentimental value alone supersedes some of the actual values, but those were important factors too.
For the last part, I have the girls duffel bags and we instructed them to get three days worth of clothes and get them in the bag. Then I checked their bags, lots of room. So then it was extra clothes and special personal items. For the most part they were really good about it, I only kicked out a couple posters and some random items that were easily replaceable to make room for more important items like contacts and other necessities like glasses... and a toothbrush, a hairbrush... a jacket, a couple sweatshirts. Knowing how Bradley can go through clothes, and luckily his still small size - almost everything of his fit in his bag... a good thing.
We never got to the point where we were loading...just to staging. Bags were kept against their bedroom walls where they were ready to be grabbed. The medical equipment was readily available for use, except the extra IV pole we have is always boxed and ready. Blankets folded and sitting on the back of the coach, always ready to be grabbed last.
From there we waited, ready to be ready to load. And the fires raged on and moved away from us. So instead of loading us up, we went and loaded up the van with essentials from the store- and we took them to donation spots to try to help those who had to rush out and had nothing. We did soap and shampoo, socks and diapers... tried to think of the things most needed and least donated. And as we handed them off we said a prayer for those in that need and a prayer of gratitude that we weren’t, that somehow things turned away from us and we could still be home. Safe from the fires and eventually, safe enough from the smoky air.
And now every year, we watch and we wait and we judge distance and smoke levels and are ready to do it all over again to prepare to get my respiratory compromised three out of harm’s way if necessary. Because we aren’t the ones that wait it out. We’re the ones that they say you should considering leaving and we would. And if the smoke filled air isn’t kept from inside the house - then we go. Taking chances with Bradley and Sydney aren’t an option. And if Dad hadn’t been safely at work almost on top of the water everyday - we might have gone anyway.
We were very lucky. Our struggle was keeping one active, little boy occupied at Home. So not a struggle...just a challenge. We were Blessed and watched over for sure.
31 For 21 Blog Challenge...there are no end to the extent and the amount of challenges in this life. Always watching these winds and these fires, and always praying for the safety of these fire fighters, first responders and silly news crews that just keep getting in the way. Sigh...
Saturday, October 26, 2019
Time with the UCSB Gauchos
There are some days that somehow work out so much better than you hope. Today was one of those days. And sometimes, it’s a blink in time and you just feel gratitude for the gift.
We hear about the occasional events for the special needs community. We try to take Bradley to all we can. We’ve loved when we can get him involved in different events, especially when we are able to help him overcome being shy and his tendency to cling to one of us. Challenger baseball was a big step for him. He had some success and though he wouldn’t go out on the field without his sister, he still went out without Eric or I. Big steps for a shy little guy.
Santa Barbara tends to offer more opportunities for Bradley then down in our little town and county, so I hear about opportunities up there. There have been a bunch: but time, circumstance, and Bradley’s health have all managed to prevent our participating with him. Most of the time, the events have either been during the week, or on a weekend day when the girls have had volleyball. A few times, he was just too sick to go and I believe one of the fires created air quality that we couldn’t take him out in, and then winds have prevented us a time or two as well.
Another chance today. I heard about the event over a month ago and I have had it on my calendar. The UCSB baseball team was hosting a Fall Sports Day for the Special Needs Community. It was another perfect chance for Bradley, so I was excited to take him and I was afraid it wouldn’t happen this time. We have had fierce winds whipping through at the same speed as hurricanes, and with them terrible air quality that makes the outside dangerous for Bradley, and his sister and dad. There were fires up near there, and then those were taken care of and so it looked good the event would happen. It was scheduled for the late afternoon which was perfect because Madison had her ACT this morning and wouldn’t be home until after 1:30. But I was still worried about the weather, the winds, and the air quality. I looked into all three, and going into Goleta on the edge above Santa Barbara, was probably the best place for all of them today.
We rushed out, and made it - but about fifteen minutes late. But no one seemed to mind. They gave Bradley a name tag and as we walked out onto the ball field, he was immediately interested in this humongous beach ball. As he made a beeline for it, the girls asked if I wanted them to go with him, I told them to wait. Then a couple of the players moved towards him and engaged him right away. They laughed with him and played with him, helping him push that huge ball all over the field. He went from one ball to the next, all these different size and different type of balls. The he discovered rockets and that was the most fun! He started to get a little tired, so Madison took him some juice and that helped him revive, and he went back to the balls. A little bit later, we got him over to the small scale ball diamond and they set him up to hit off a tee, which he likes to do, though he has forgotten all of his technique - like, hold the bat with two hands... but another player was there to teach him and though he was slow to grasp the concept, he was listening and receptive to a new friend. After he hit a small bunt, 😉 he wasn’t keen to run at first...but Madison took his hand and off they went. The team cheered his name and directed him around the bases, where he stopped about two feet from home, he tossed his new hat, and ripped off his name tag. Madison gave him a lift the last couple feet and as soon as he touched home plate, he sat crossed legged on top of it. Time for another break.
He went back to the field and all the balls. Out there, something amazing happened. Bradley put his hands up for the players and someone would help him up on the ball and then keep it steady for him to sit. And then he’d come down, and on the way to another ball, we saw him holding hands with one player that he seemed quite attached too. #27, you don’t even know how special that was that he chose you. Like watching a flower bloom, Bradley was interacting with players and doing it on his own. He wasn’t shy and he wasn’t nervous. He was relaxed and calm, interested and interacting with everything and everyone that come to him. And Eric and a I just watched from afar, proud of him and marveling at how open he was to the whole experience and all the players.
At one point he was so comfortable on the ball that he tossed off his shoe and socks. Good grief! So I sent the calvary and the girls went and got his socks and shoes back on and after he was helped back down, he looked at them and waved and said: “Bye!”
When it ended, he was pretty tired and ready to quit. But without protest, he joined the whole team and the other participants in a team huddle; I lost sight of him as they moved him into the middle for their cheer. But then as they broke up and started to move away, they called him back for pictures and he sat on the knee of a player in front and took a few before he was just tired of sitting still and bailed out. But he did it all, not perfectly, but no one said it had to be. Those young men showed such kindness, such patience, and such friendship. My heart is so full it might be overflowing a bit, but that’s okay; mom’s sometimes do that, especially when a group so completely Blesses your child.
Not enough words to say thank you. We watched out boy hit some amazing milestones today. We’re so proud of you Bradley! And we are truly grateful! Time to get Bradley a shirt for baseball and plan to get our little family to a game to support his new friends, it’s the very least we can do.
We hear about the occasional events for the special needs community. We try to take Bradley to all we can. We’ve loved when we can get him involved in different events, especially when we are able to help him overcome being shy and his tendency to cling to one of us. Challenger baseball was a big step for him. He had some success and though he wouldn’t go out on the field without his sister, he still went out without Eric or I. Big steps for a shy little guy.
Santa Barbara tends to offer more opportunities for Bradley then down in our little town and county, so I hear about opportunities up there. There have been a bunch: but time, circumstance, and Bradley’s health have all managed to prevent our participating with him. Most of the time, the events have either been during the week, or on a weekend day when the girls have had volleyball. A few times, he was just too sick to go and I believe one of the fires created air quality that we couldn’t take him out in, and then winds have prevented us a time or two as well.
Another chance today. I heard about the event over a month ago and I have had it on my calendar. The UCSB baseball team was hosting a Fall Sports Day for the Special Needs Community. It was another perfect chance for Bradley, so I was excited to take him and I was afraid it wouldn’t happen this time. We have had fierce winds whipping through at the same speed as hurricanes, and with them terrible air quality that makes the outside dangerous for Bradley, and his sister and dad. There were fires up near there, and then those were taken care of and so it looked good the event would happen. It was scheduled for the late afternoon which was perfect because Madison had her ACT this morning and wouldn’t be home until after 1:30. But I was still worried about the weather, the winds, and the air quality. I looked into all three, and going into Goleta on the edge above Santa Barbara, was probably the best place for all of them today.
We rushed out, and made it - but about fifteen minutes late. But no one seemed to mind. They gave Bradley a name tag and as we walked out onto the ball field, he was immediately interested in this humongous beach ball. As he made a beeline for it, the girls asked if I wanted them to go with him, I told them to wait. Then a couple of the players moved towards him and engaged him right away. They laughed with him and played with him, helping him push that huge ball all over the field. He went from one ball to the next, all these different size and different type of balls. The he discovered rockets and that was the most fun! He started to get a little tired, so Madison took him some juice and that helped him revive, and he went back to the balls. A little bit later, we got him over to the small scale ball diamond and they set him up to hit off a tee, which he likes to do, though he has forgotten all of his technique - like, hold the bat with two hands... but another player was there to teach him and though he was slow to grasp the concept, he was listening and receptive to a new friend. After he hit a small bunt, 😉 he wasn’t keen to run at first...but Madison took his hand and off they went. The team cheered his name and directed him around the bases, where he stopped about two feet from home, he tossed his new hat, and ripped off his name tag. Madison gave him a lift the last couple feet and as soon as he touched home plate, he sat crossed legged on top of it. Time for another break.
He went back to the field and all the balls. Out there, something amazing happened. Bradley put his hands up for the players and someone would help him up on the ball and then keep it steady for him to sit. And then he’d come down, and on the way to another ball, we saw him holding hands with one player that he seemed quite attached too. #27, you don’t even know how special that was that he chose you. Like watching a flower bloom, Bradley was interacting with players and doing it on his own. He wasn’t shy and he wasn’t nervous. He was relaxed and calm, interested and interacting with everything and everyone that come to him. And Eric and a I just watched from afar, proud of him and marveling at how open he was to the whole experience and all the players.
At one point he was so comfortable on the ball that he tossed off his shoe and socks. Good grief! So I sent the calvary and the girls went and got his socks and shoes back on and after he was helped back down, he looked at them and waved and said: “Bye!”
When it ended, he was pretty tired and ready to quit. But without protest, he joined the whole team and the other participants in a team huddle; I lost sight of him as they moved him into the middle for their cheer. But then as they broke up and started to move away, they called him back for pictures and he sat on the knee of a player in front and took a few before he was just tired of sitting still and bailed out. But he did it all, not perfectly, but no one said it had to be. Those young men showed such kindness, such patience, and such friendship. My heart is so full it might be overflowing a bit, but that’s okay; mom’s sometimes do that, especially when a group so completely Blesses your child.
Not enough words to say thank you. We watched out boy hit some amazing milestones today. We’re so proud of you Bradley! And we are truly grateful! Time to get Bradley a shirt for baseball and plan to get our little family to a game to support his new friends, it’s the very least we can do.
So go Gauchos! From your newest fans!! And thank you so much!!!
A very happy and exhausted little boy is crashed out tonight. And this momma can’t stop smiling! #ucsbbaseball #blessedbygauchos #sograteful
Saturday in the books, another day in the 31 For 21 Blog Challenge! So happy for my sweet boy!!!
UCLA Volleyball Night!
Go Bruins!
Friday night was college volleyball night. Thanks to the girls’ High School Volleyball coach, the High School players got to watch a game for a dollar. And what a great game!
UCLA Lady Bruins are unranked and were up against the undefeated No. 2 team in the nation, Stanford. And the Bruins pulled off a three game sweep for an upset, all very exciting.
The girls rode together in a van with the Coach, while Eric, Bradley, and I drove down taking a friend and his daughter with us. We all met up and walked through the student store. Bradley chose a shirt to support the Bruins and ouldn’t wait to wear it. Then he sat patiently, though not wanting to eat while we all had dinner before going in to see warm-ups and the game. Pauley Pavilion is quite large and we were somewhat surprised to see such a full house. Surprised, but oh so pleased. Ladies sports don’t get nearly enough recognition and now we all wonder where or if they will survive this new agenda. But that is another topic entirely.
The girls sat with the team, and Bradley sat between Eric and I. He was interested in the the people around him, saying hi to a few, but after a bit he requested his movie and we got him set up with his movie and his headphones and he sat crossed legged in his chair while we enjoyed the game. And we did enjoy the game. At one point, we kind of smiled at each other and acknowledged between us how much Bradley has grown up and developed to the extent that he was willing to sit with us. To see him looking up and looking around, was such a joy, interactions are the best sights with him. He would look up and copy fans by occasionally clapping and holding up his finger on game point like everyone around him. We’ll shrug past that whole little “ooohhh” in the middle of the National Anthem, mostly because we’re pretty certain that he was trying to sing along. 😉.
After the game ended, there were plenty of pictures and such while the girls enjoyed being able to stand on the gym floor, feeling the awe of being there, of standing where one the highest level of game play had just dominated the floor. Definitely some awe for sure. About then, Bradley wanted up and his head found dad’s shoulder and he was out for the night. A friend of ours was watching the game on tv and told us she saw a cute but sleepy little guy with his head on a dad’s shoulder and realized it was Bradley. So yeah, he was ESPN 2 famous for about ten seconds last night. 😁. He seems unaffected by it though, fear not.
We got home long before the girls, got him settled into bed and barely kept our eyes open until his sisters finally got home. In a rare feat, Bradley actually slept through the night, which was so appreciated by his mom and dad. I know I needed the sleep for sure.
Our boy is growing up. He walked most of the time, only getting a lift once in a while and then of course after the game. But that was big. And when he didn’t need to hide away from the noise and the commotion, that was even bigger. Granted, if the match had gone to five games - well, who knows what he would have done and how the night would have ended. But, it was a great time, a great night, and such a success for our little boy. Definitely a win for Bradley and us!
When he starts growing and developing - he sure does it in the best surprising ways and moments! 31 For 21 Blog Challenge - grow buddy grow! So proud of you!
Friday night was college volleyball night. Thanks to the girls’ High School Volleyball coach, the High School players got to watch a game for a dollar. And what a great game!
UCLA Lady Bruins are unranked and were up against the undefeated No. 2 team in the nation, Stanford. And the Bruins pulled off a three game sweep for an upset, all very exciting.
The girls rode together in a van with the Coach, while Eric, Bradley, and I drove down taking a friend and his daughter with us. We all met up and walked through the student store. Bradley chose a shirt to support the Bruins and ouldn’t wait to wear it. Then he sat patiently, though not wanting to eat while we all had dinner before going in to see warm-ups and the game. Pauley Pavilion is quite large and we were somewhat surprised to see such a full house. Surprised, but oh so pleased. Ladies sports don’t get nearly enough recognition and now we all wonder where or if they will survive this new agenda. But that is another topic entirely.
The girls sat with the team, and Bradley sat between Eric and I. He was interested in the the people around him, saying hi to a few, but after a bit he requested his movie and we got him set up with his movie and his headphones and he sat crossed legged in his chair while we enjoyed the game. And we did enjoy the game. At one point, we kind of smiled at each other and acknowledged between us how much Bradley has grown up and developed to the extent that he was willing to sit with us. To see him looking up and looking around, was such a joy, interactions are the best sights with him. He would look up and copy fans by occasionally clapping and holding up his finger on game point like everyone around him. We’ll shrug past that whole little “ooohhh” in the middle of the National Anthem, mostly because we’re pretty certain that he was trying to sing along. 😉.
After the game ended, there were plenty of pictures and such while the girls enjoyed being able to stand on the gym floor, feeling the awe of being there, of standing where one the highest level of game play had just dominated the floor. Definitely some awe for sure. About then, Bradley wanted up and his head found dad’s shoulder and he was out for the night. A friend of ours was watching the game on tv and told us she saw a cute but sleepy little guy with his head on a dad’s shoulder and realized it was Bradley. So yeah, he was ESPN 2 famous for about ten seconds last night. 😁. He seems unaffected by it though, fear not.
We got home long before the girls, got him settled into bed and barely kept our eyes open until his sisters finally got home. In a rare feat, Bradley actually slept through the night, which was so appreciated by his mom and dad. I know I needed the sleep for sure.
Our boy is growing up. He walked most of the time, only getting a lift once in a while and then of course after the game. But that was big. And when he didn’t need to hide away from the noise and the commotion, that was even bigger. Granted, if the match had gone to five games - well, who knows what he would have done and how the night would have ended. But, it was a great time, a great night, and such a success for our little boy. Definitely a win for Bradley and us!
When he starts growing and developing - he sure does it in the best surprising ways and moments! 31 For 21 Blog Challenge - grow buddy grow! So proud of you!
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