This is it folks....the final day of the "31 For 21 Challenge!"
I love that it ends on Halloween night, the night you can be anything in the world you want to be, where the weirdest, most creative costumes are considered the best. I like the potential that is allowed. A person that is otherwise stared at, ridiculed...they can be whomever they wish to be, if just for a night. And yet, I hate that tomorrow it all goes back to the judgement and the ridicule. But remember I am the Mom of a little boy with the extra chromosome, the one that makes him look slightly different from other little boys...the one that makes him learn a little slower, talk much later, if ever...that one. My little boy that valiantly tackled stairs and crowds, because he really wanted to knock on doors, because that is what he loves to do more than anything. He was the one trying to keep up with four really excited little girls and doing a pretty good job of it. Often we were the last ones up and the last ones down...those stairs can be daunting, and the crowds are best left to ebb forward without us, leaving us to move through a little more solo...but on our way out, he was the one that I turned to a candy giver and when I said to him, say thank you...he signed thank you. Other than the four little girls we had with us...not sure a whole lot were saying thank you.
I learn something every October. In my quest to bring Awareness to the World about Down syndrome, I am also trying to bring Acceptance. It's never enough. As I try to move my son through the trials of his life, I realize that there is a greater world out there that I don't know if we can conquer. I see the research being done about Down syndrome and how it benefits everyone, and then I see the articles and oped pieces of those wishing to eradicate Down syndrome. And that makes things that are tough a little tougher...someone who thinks that my son is not worth the breath he breathes, that he should have been aborted, that some parents so bitterly regret having their children with Down syndrome. What a bitter pill to swallow as Bradley's mom. Knowing that had Fate not given him to us, that he might not be here now. Sometimes I shudder to think what his life might have been with one of those parents that regret. Would they have taken care of him, would his health gotten the worst of him? Would he have been like one of those children in the Russian orphanages that get sent to adult asylums at five years old because no one wants them? Would he have lived through the early years that were so difficult? On my worst day, on his worst day, I want him and am grateful he's mine. The worse the stories, the worse the opinions of people like Richard Dawkins...the more I instinctively want to pull Bradley even closer to me.
I am trying to share Bradley with the world now, in an attempt that he will grow up before your eyes so that you will be familiar with him. So often there are a lot of changes in appearance, and I think there is value in seeing those changes so that there isn't surprise or fear. I do this knowing that someone could attack my son's image, a hacker could steal it and use it in a negative way...and yet I still put him out there. I think a lot about the book that Gene Stallings wrote about his son and how he and his wife dressed their son as cute as possible so that he would be engaging to people, so they would be drawn to him and not away from him. Although I would never be accused of putting much concern into appearances (I forget to wear make-up pretty much everyday), I see how making sure that Bradley puts his best foot forward so that he ropes you in with his adorableness (yeah, I know, not a word), so you can't resist him. I don't like the word manipulation, I am trying to indoctrinate you into the world of all things Bradley. ;-) I like to share how his life is with his sisters, how they are just everyday sweet girls that live a full life, perhaps even fuller because of their brother. I want to let the world know that having a child with Down syndrome is okay, even better than okay. The hand may not be what you expected, but life is life, you play the hand you are dealt the best way you know how.
This time around I was given a Golden moment, a chance to do what I said I would do, I kept a promise to myself. I was venting Bradley and changing his diaper in the Ladies room at Balboa. I had him strapped back in his stroller and was cleaning out his tube and syringe. When I turned around, an older woman, gently on the other side of seventy, came up to the sink in my place and asked if the little boy was mine, I smiled at her and said yes. She asked how old, I told her four. She nodded and said hers was 56. That she never regretted a day, how he was the best thing to happen to her. She started to turn away but I stopped her and said: "Thank you. Because you kept him home and loved him, you paved the way for us. Bradley has such a better life because of you and your family." She smiled at me, tentative and a little sad, "Not everyone sees them as a Blessing."
I nodded, "No ma'am they don't."
"It is truly their loss."
"Yes ma'am, it truly is." This opened the door for another woman to stop and tell me that her husband taught adult Sunday School and he would always tell her that his students with Down syndrome always taught him more than he ever thought them. What a lovely thing to add. After that, we stepped out and I met her son, then we were separated by the crowd at the pharmacy, lucky them they were done and I was just getting started....kind of poetic irony that...we're just getting started with Bradley's life too.
It felt right to me, to have that chance to say thank you. There is such a chasm between the parents of adults with Down syndrome and my age and my Bradley...sometimes, we don't know what to say to each other. Today we are lucky, we have so much outside help, they had to go it alone and their fights were so much different. Please don't think the fights today are easy, they are just as difficult and the stakes are just as high. But so much is easier. There is still a lot of social stigma related to Down syndrome, but I do believe that more people are trying, it's just that the ones that are the loudest are the ones that are trying to end people like Bradley. There is still a great deal of work to be done.
Acceptance and Awareness. Basic human desires, they feel like needs; but honestly, I think they are just a wish that when granted makes everyone feel better. Every person wants a place that feels like they belong and at least somewhere where they feel like they are wanted. You, definitely me, my girls, my son. Extra Chromosome or the usual count, the Need, the Desire to fulfill these Needs is one of my biggest goals as their mom.
Thank you for joining me on this month long journey. Bradley is a pretty awesome little boy with two amazing sisters that are helping to make this family pretty great. We have an extra something special in our house, and we know we're Blessed by its presence and especially the little boy that brought it with him.
Happy Halloween All! Happy Friday and Happy Day 31! Be well and Be Blessed!
Friday, October 31, 2014
Thursday, October 30, 2014
Day 30: It's a Bradley update!
New Tubes...Healthier Ears!
I would promise not to rant, but I just might. It was one of those really frustrating days, but there was also a lot of good stuff along the way too. So, I guess you can call it a mixed bag kind of day.
We started today so early the sun was not up and was thinking of staying in bed I think. We got ready to go and I gave Bradley his medicine. With his reflux and the seizures they always tell me it's important to get those meds in him. When we met the pre-op anesthesiologist last week, she said give it, I said okay, here's how I have to do that: in applesauce so that the Prevacid doesn't just sit in his stomach and so that it can get through the tube, I was told no problem.
I was told wrong. 1 hour and 45 minutes later, they decided to postpone his surgery because of the 5ml of applesauce. Eric and I just looked at each other dumbfounded. They wanted us to wait an hour, but they didn't want to give him the Versed to chill him out...even after we told them it took a good half hour before the Versed kicks in for him. So we were to wait for an 'hour" which is hospital speak for two, and THEN he would get Versed and then after it kicked in he would be taken back. We just shook our heads, gave Bradley his IPad and watched the Holding room empty and then fill again.
As we sat and watched, we were jolted into a reality we never thought we would experience at this hospital. With all my kids, I have always been so happy to have their care at a military hospital. I think that sometimes the Children's Hospitals have a tendency to get a little jaded, sometimes they forget how scary things can be because they are dealing with scared kids everyday. There has always been something special, something extra that our babies get from the military hospital that they don't get anywhere else.
When the girls had their Adenoids and Tonsils removed, they were taken such good care of, we were so relieved. When Bradley had his Fundoplication and was in the PICU for ten days, half of them sedated, at one point his nurse had his morphine in his shirt pocket ready to administer at the first sign of trouble as we were trying to nurse his last remaining IV site until he could wake up and not need it anymore. There's just something about military hospitals - not ERs, make no connection there; but, the hospital, and the OR where being used to so many adults, when a child passes through (for the most part) they are just really taken care of in a better way. We all have our stories, we all have our moments where that is not true, but in comparison to some of the care we have had at Children's...well, we'll keep Balboa. 
So there we were in our comfort area. We'd spoken to Bradley's ENT, he just smiled at me, told me it wasn't our fault, don't apologize to him, he would take care of Bradley, it would be all right. We had the same nurse that we've been Blessed to have through the rest of Bradley's procedures, and through both our girls. Nurse Jeri has been with our most precious miracles during the hardest times and always bring them through it well, no matter which surgeon has them. So, we felt pretty calm. And then a Lt. Commander rocked our world. Bradley's bed was the last bed in the line, the side of his bed literally parallel to the work desk, the space equivalent of almost two trashcans, I say almost because the staff had to move it every time they wanted to walk by. So we were close, really close. Talking to herself, not to us, we never thought or accused her of talking to us, she stops shuffling papers and says about a record she is holding, "I'm holding the record. I am such a Tard." Then before we could overcome the shock to formulate an appropriate response that wouldn't include yelling or tears (I sometimes get so angry I cry, it's mortifying), she was gone upstairs to go pump milk for her child. Here's the thing. I don't want you to say the word because the word is a horrible word and one that someday, someone, is going to say to my son. It's a cruel world and I wish I could say it might never happen, but I can't. The reality is that people don't think and people can be cruel. People think that the worst thing to be would be developmentally disabled, and so what better insult? If you're in your private world or space, I'm not going to say anything, probably look at you with pain that you've disappointed me, but it's not my place to be your mom or your judge. Come at my kid and I will take you out! Please understand the difference. But when you use the term in a professional arena, someone is going to hear from me. And when you use it somewhere where my son is supposed to be safe, and cared for, and you are one of the care givers, standby. She took a place where he is supposed to be focused on and cared for: physically and mentally, and she broke it. I told Bradley's ENT, that had she been an OR nurse taking care of him today, I would have pulled him out and taken him home, or she would have left the OR. But she would not get the chance to care for my son.
Anyway, the Doc got a name for us, and when he came back with it, he let us know her name, he also let us know that he'd been gone a bit because he'd been talking to her. He says she was mortified and apparently a mess...she wanted to come talk to us but he told her to get control of herself first. He told us she is a good Nurse, spot on, good care...but he also said she was not aware that it was not ever the right thing to say especially when Bradley, and his parents are sitting right next to her. I don't know if her World view changed today, or if she takes the shot to the ego for getting caught, shrugs it off and goes on with her day...I don't know. I know what I want to believe...but I am naive most days. I try to stay Bright side because Negativity feeds on my soul until there isn't much left, but there wasn't a lot of positive in this. It left me sad, and it left me with this burden of wondering when/if someone was going to say it to Bradley with me around, without me, how would he take it when he is old enough to understand it? Worrying about just getting through today, this surgery...there was no place or need to be worrying about tomorrow like that.
While we were discussing and discussing with Bradley's doc, we were busy doing two things: we connected with him on a more personal level than we had before, and we solidified his view and his nonacceptance of that kind of offensive terminology. In the back, Bradley was stubbornly holding onto the blood we needed him to give so that they can test him for Celiac Disease. Getting his blood might have taken longer than the actual surgery. It only took four people to hold him down to gas him, shocking every last one of them. We tried to tell them, but we just kept being told how one guy has four kids and one has a three and a half year old....so.... I stopped talking and just laughed at the description of how they had to fight to get him on the table and then to sleep. Then I want to weep seeing the countless sticks he was given trying to find the right vein to give up the blood. Poor Baby!
Finally, we saw him again. He slept forever, but finally woke up enough to head to Recovery! Needless to say, he was ready to go home as soon as he took one more little nap, ate and drank and gave a diaper to the cause. Once he was fully awake, he ate four graham crackers, pudding, peaches and drank his water. Then as soon as he could go home, we took off! As we walked out of his room the Volunteer from the YMCA was there, she offered him a teddy bear or stuffed horse. As she showed him I asked him in sign language, which one he wanted...he said "Horse" with an attempt at the sign and the word: it was beautiful! He carried that horse all through the hospital, out into the courtyard and then dropped it to chase his shadow and trip over his unbalanced feet - that's when he went back in the stroller for the remainder of our adventure. He doesn't like the ear drops he has to use, doesn't care for the feeling of pain that comes as his medicine wear off, and despite our warnings they still used tape on his eyes so that he looks rough tonight and will look like he lost a fight with Rocky tomorrow...but, but....he is asleep in his bed and snoring the light snore of a very tired little guy sleeping pretty darn good.
Pretty sure his mom will be doing the exact same thing very, very soon! Bradley did good, and he didn't understand any of the negative stuff...so it worked out as good for him as a day of surgery can. We enlightened at least one person...maybe that Nurse too. But I heard from a few friends on Facebook who let me know of situations where they were taking the chance to connect others with Down syndrome, and other friends voicing their support...and that felt very good. We were shocked by the blow, it came at the most surprising place...but we're still standing. Still standing!
Wednesday, October 29, 2014
Was This Wednesday or Monday
Day 29: No, it's not easy.
Apparently, the nice Monday we had was just a precursor to a terrible Wednesday. My Royals chose tonight of all nights to forget how to hit the ball. Why on earth does that have to happen in the Seventh Game of the World Series? Grr!! But still, a really great year, and with no Play-Offs since 85, I'll take it.
We spent the morning at the Park, a beautiful morning, Bradley's favorite park...and by the time we left he was finally willing to cross the bouncy bridge but still refused to try any of the slides. Not sure when this happened, but somewhere in the last few months my kiddo has determined that slides are evil and should be avoided at all costs...oh wait, they are kind of really fun, but they should only be braved when wrapped securely around a parent or a sister. The more awkward the descent the better and definitely cause for great celebration. (I may never walk straight again!)
Somewhere in the middle of our time there, a ton of kids showed up. Most were toddlers that came with some stroller class with their moms. All these adorable little year old kids, all of them walking, most of them talking. The ones that weren't talking just kept eye-balling me. You know that look, they hide behind a pole and then peek around at you. Like an Idiot, I say "Boo!" Thinking we're playing some game...wrong...the kid just stared at me like I had two heads or something. At that moment I was wishing I did, that way I had someone to say "Boo!" back at me. Anyway, glared at judging me girl and went off to find Bradley, he'll say Boo to me.
So I watched him walk back and forth and back and forth and back again. At one point he was sitting next to another little boy named Max. They sat side by side for a little while then Max was up and gone and Bradley was left behind again. None of the other kids were interested in stopping near him, most don't slow down to see him. And it was hard to watch in some ways. All those kids talking, while I am trying to get his attention for him to see my hands. All those kids stopping to talk to me, or to eyeball me as judgy girl did; but he doesn't want to interact with them or say Hi to their Moms, or Dads. He's off in his own world and sometimes I'm not even sure I'm invited into it.
Days where I watch him get left behind, remind me of how he is different from other kids. How different our family is from others. Most days I don't see what we might be missing...some days I get a glimpse of what it would be like if he were better on his feet and more verbal. And though that would be awesome, it's just not the world we were given. Right now our world is frustration as we work to control pain and improve sign understanding and delivery. Hopefully, tomorrow we get better control of the pain and maybe some of his frustration will ease because he won't be trying to sign through the pain, or understand me while he's in pain.
I'm trying not to put too much pressure on this surgery. I know the potentials behind these tubes, but I don't know if they can return the smiles I used to get all the time. But if we can fix the ears and he stays cranky, then I know we can change his Anti-seizure medication because it is causing the bulk of the problems. Right now we just don't know.
So for an Inclusion day, today was a bust. Awareness...yeah I suppose, he was in the midst of a bunch of kids and moms. Acceptance? Well, that's always the hardest one now isn't it? Don't know that he was or wasn't accepted. With little bitty kids, they are more interested in where the next slide or mud pie is coming in to play; no one ran from him or to him, considering the ages that's the norm. I'm not sure I was Accepted. I wasn't in their little class, I wasn't a new mom...so I didn't have a place in that playground dynamic either. Mostly, it just felt like another day chugging along up the side of the Wheel of Fortune, wondering if there is any possible way we might be pulling out of the mud on the bottom and reaching up towards the top and a period of joy, peace and prosperity.
That would just be a really nice change.
Night All!
Apparently, the nice Monday we had was just a precursor to a terrible Wednesday. My Royals chose tonight of all nights to forget how to hit the ball. Why on earth does that have to happen in the Seventh Game of the World Series? Grr!! But still, a really great year, and with no Play-Offs since 85, I'll take it.
We spent the morning at the Park, a beautiful morning, Bradley's favorite park...and by the time we left he was finally willing to cross the bouncy bridge but still refused to try any of the slides. Not sure when this happened, but somewhere in the last few months my kiddo has determined that slides are evil and should be avoided at all costs...oh wait, they are kind of really fun, but they should only be braved when wrapped securely around a parent or a sister. The more awkward the descent the better and definitely cause for great celebration. (I may never walk straight again!)
Somewhere in the middle of our time there, a ton of kids showed up. Most were toddlers that came with some stroller class with their moms. All these adorable little year old kids, all of them walking, most of them talking. The ones that weren't talking just kept eye-balling me. You know that look, they hide behind a pole and then peek around at you. Like an Idiot, I say "Boo!" Thinking we're playing some game...wrong...the kid just stared at me like I had two heads or something. At that moment I was wishing I did, that way I had someone to say "Boo!" back at me. Anyway, glared at judging me girl and went off to find Bradley, he'll say Boo to me.
So I watched him walk back and forth and back and forth and back again. At one point he was sitting next to another little boy named Max. They sat side by side for a little while then Max was up and gone and Bradley was left behind again. None of the other kids were interested in stopping near him, most don't slow down to see him. And it was hard to watch in some ways. All those kids talking, while I am trying to get his attention for him to see my hands. All those kids stopping to talk to me, or to eyeball me as judgy girl did; but he doesn't want to interact with them or say Hi to their Moms, or Dads. He's off in his own world and sometimes I'm not even sure I'm invited into it.
Days where I watch him get left behind, remind me of how he is different from other kids. How different our family is from others. Most days I don't see what we might be missing...some days I get a glimpse of what it would be like if he were better on his feet and more verbal. And though that would be awesome, it's just not the world we were given. Right now our world is frustration as we work to control pain and improve sign understanding and delivery. Hopefully, tomorrow we get better control of the pain and maybe some of his frustration will ease because he won't be trying to sign through the pain, or understand me while he's in pain.
I'm trying not to put too much pressure on this surgery. I know the potentials behind these tubes, but I don't know if they can return the smiles I used to get all the time. But if we can fix the ears and he stays cranky, then I know we can change his Anti-seizure medication because it is causing the bulk of the problems. Right now we just don't know.
So for an Inclusion day, today was a bust. Awareness...yeah I suppose, he was in the midst of a bunch of kids and moms. Acceptance? Well, that's always the hardest one now isn't it? Don't know that he was or wasn't accepted. With little bitty kids, they are more interested in where the next slide or mud pie is coming in to play; no one ran from him or to him, considering the ages that's the norm. I'm not sure I was Accepted. I wasn't in their little class, I wasn't a new mom...so I didn't have a place in that playground dynamic either. Mostly, it just felt like another day chugging along up the side of the Wheel of Fortune, wondering if there is any possible way we might be pulling out of the mud on the bottom and reaching up towards the top and a period of joy, peace and prosperity.
That would just be a really nice change.
Night All!
Tuesday, October 28, 2014
Waiting, Again
Coming in on Day 28 of the "31 For 21: Blogging Challenge."
We're coming to the end of October, and I can't believe that we are about to put another one in the books. A month that started with so much potential is going to slide into the realm of "not quite yet." We're getting kind of tired of "not quite yet."
October was supposed to be a second attempt at a new job for Dad, but that has been delayed again. Every potential has been found to be pushed back again and again. Bradley was supposed to go to school, but now there are limitations. Bradley's pediatrician was giving the go ahead and the big push to start Bradley in the classroom one day a week when the kids come back from Fall Break. But now we need to wait. And it's not the Mom or the school putting the breaks on, it's the pediatrician.
When we knew we couldn't delay any further on having Bradley's ears taken care of, we agreed to let his pediatrician take a look at his ears and weigh in. He was in line with the others because Bradley isn't in any position to wait for a long period of time to get his ears taken care of. On this, we are all in agreement. The funny thing is this...I thought I was the one holding back on letting Bradley face the germ ridden school. I let him venture in to capture the end of the day germs, and when his teacher suggested we start him the week we come back from break for one day, that seemed like the way to go; after all, his Pediatrician only gave him a letter for a month before starting in at an actual classroom setting. So as an FYI for his doc, I mention this to him. He sits there and nods and looks at me and goes: "We'll see."
I just kind of cocked my head, and said, "Okay." And he said it again and I just nodded. I'm not mad, I'm not worried about the delays for Bradley. I know that in part his issues right now might have those end of the day germs as contributors...we knew this could happen. I also know that by fixing his ears we are giving him a fighting chance of actually getting into the classroom, sooner than later. I know the potential he has, I see the way he works with his teachers, I see the way he sort of agrees to work with me over the last ten days without his teachers. I say sort of, because he was willing to do three puzzles in a row with me, and that is pulling teeth on a normal day.
I've watched him take an interest in playing around other kids at the Buddy Walk, and I've seen the way his play has changed with the girls. I walked in on a hug fest the other day, and it was Awesome. Sitting on Sydney's bed, Bradley was trying to throw off all her stuffed animals, but she told him "No, hug them, don't throw them." Thus began the Great Hug Fest of 2014. He hugged, then kissed every stuffed animal she owns. First him, then he gave it to Sydney to hug and kiss, then took them back, and repeat, then to Madison, then back, then to me, and back...those animals had more loving than they ever dreamed possible. The fact that he was playing with the stuffed animals was big, he normally has no place for them in his world. ;-) He crawls into his box of Little People and searches until he finds his horse, and that thing gets trotted all over the place. And then there's Murray Wiggle. That doll walks and dances and for some reason he runs around without his shirt on quite a bit! I don't want to think about why that is, but I am sure it has something to do with Bradley constantly taking off his own shirt...over and over again! He starts dropping his pants successfully and I think we will be weeks away from potty training! Of course I am waiting patiently, I am the poster child for Patience! HAHA...I know, look out for lightning!
So, anyway, back to one day at a time as we approach another surgery for Bradley. Is this a big surgery? No, not really. But he will be sedated, again. And we'll breathe easier when he's all done and awake again. I always feel better when I have him back in my arms in that uncomfortable rocking chair they always put me in. That just means he's breathing well, and his rates are good, so it's safe for me to hold him again. He's usually crying, he's usually not sure where he is, and doesn't know I'm there and holding him really...but I know he's all right. That's what I'm waiting for, I want that moment.
So...we wait. We wait for tomorrow, and get through it...then we look at Thursday and face it. We'll worry about tomorrow when it gets here, today is enough.
We're coming to the end of October, and I can't believe that we are about to put another one in the books. A month that started with so much potential is going to slide into the realm of "not quite yet." We're getting kind of tired of "not quite yet."
October was supposed to be a second attempt at a new job for Dad, but that has been delayed again. Every potential has been found to be pushed back again and again. Bradley was supposed to go to school, but now there are limitations. Bradley's pediatrician was giving the go ahead and the big push to start Bradley in the classroom one day a week when the kids come back from Fall Break. But now we need to wait. And it's not the Mom or the school putting the breaks on, it's the pediatrician.
When we knew we couldn't delay any further on having Bradley's ears taken care of, we agreed to let his pediatrician take a look at his ears and weigh in. He was in line with the others because Bradley isn't in any position to wait for a long period of time to get his ears taken care of. On this, we are all in agreement. The funny thing is this...I thought I was the one holding back on letting Bradley face the germ ridden school. I let him venture in to capture the end of the day germs, and when his teacher suggested we start him the week we come back from break for one day, that seemed like the way to go; after all, his Pediatrician only gave him a letter for a month before starting in at an actual classroom setting. So as an FYI for his doc, I mention this to him. He sits there and nods and looks at me and goes: "We'll see."
I just kind of cocked my head, and said, "Okay." And he said it again and I just nodded. I'm not mad, I'm not worried about the delays for Bradley. I know that in part his issues right now might have those end of the day germs as contributors...we knew this could happen. I also know that by fixing his ears we are giving him a fighting chance of actually getting into the classroom, sooner than later. I know the potential he has, I see the way he works with his teachers, I see the way he sort of agrees to work with me over the last ten days without his teachers. I say sort of, because he was willing to do three puzzles in a row with me, and that is pulling teeth on a normal day.
I've watched him take an interest in playing around other kids at the Buddy Walk, and I've seen the way his play has changed with the girls. I walked in on a hug fest the other day, and it was Awesome. Sitting on Sydney's bed, Bradley was trying to throw off all her stuffed animals, but she told him "No, hug them, don't throw them." Thus began the Great Hug Fest of 2014. He hugged, then kissed every stuffed animal she owns. First him, then he gave it to Sydney to hug and kiss, then took them back, and repeat, then to Madison, then back, then to me, and back...those animals had more loving than they ever dreamed possible. The fact that he was playing with the stuffed animals was big, he normally has no place for them in his world. ;-) He crawls into his box of Little People and searches until he finds his horse, and that thing gets trotted all over the place. And then there's Murray Wiggle. That doll walks and dances and for some reason he runs around without his shirt on quite a bit! I don't want to think about why that is, but I am sure it has something to do with Bradley constantly taking off his own shirt...over and over again! He starts dropping his pants successfully and I think we will be weeks away from potty training! Of course I am waiting patiently, I am the poster child for Patience! HAHA...I know, look out for lightning!
So, anyway, back to one day at a time as we approach another surgery for Bradley. Is this a big surgery? No, not really. But he will be sedated, again. And we'll breathe easier when he's all done and awake again. I always feel better when I have him back in my arms in that uncomfortable rocking chair they always put me in. That just means he's breathing well, and his rates are good, so it's safe for me to hold him again. He's usually crying, he's usually not sure where he is, and doesn't know I'm there and holding him really...but I know he's all right. That's what I'm waiting for, I want that moment.
So...we wait. We wait for tomorrow, and get through it...then we look at Thursday and face it. We'll worry about tomorrow when it gets here, today is enough.
Monday, October 27, 2014
Day 27: Aren't We Supposed to Hate Mondays?
So normally, I would say that I hate Mondays. And I am not suddenly switching to "I love Mondays," but I will concede that some are better than others, and this one was pretty good. The kids had a pretty good day!
Sydney is still out of school, week two of the two week break is underway, and I have to say, that little girl is quite willing to jump into Homeschooling if it lets her sleep til eight every morning. She IS, her mother's daughter. Her love of sleep is rivaled only by my own, I have taught her well. Anyway, today she went to see a Physical Therapist who is working with her on teaching her some relaxation techniques and some other muscle retraining techniques to encourage her body to start talking to her brain about stuff a little more and a little better. She did great, and though Eric and I were sort of looking at each other like: "Huh? Why are we here?" We saw potential value, and luckily, it worked out to be true. So as of right now, we believe that though the process will be long, we also believe that the end results will be in her favor.
To jump to Madison...today was a late start day at school. The Principal said that it was a Collaboration day for the teacher's...I think that is school-speak for having a catered breakfast and watching a fun movie with a teacher in it...though I wouldn't quote me on that, I have no true basis to go on here. I just know if I worked there, that is what I would need to motivate me to get up early on a Monday when I don't have students warming the seats in my classroom.
What this meant for us was that Madison didn't have to be to school until 10:05. Yep, that 5 makes a huge difference there and at the end of the day when they walk out of school at 3:05. Also, the school made today Family Fun Night. NO homework was assigned nor were tests scheduled. Kids were invited to unplug and get to know their families again. In the spirit of this, I made French Toast this morning to get Madison ready for her Zombie Fun Run fundraiser for school, Eric created a torn shirt that said: "Run Like a Zombie is Chasing U!"which she thought was quite cool.
After school it was off to Madison's Volleyball game. And as Bucket Lists go...Madison is ready to write a new list after this year. First she made the Volleyball team, then she has played quite a few times, and then tonight she got to start in the 2nd game. They play their last game on Thursday, then they are into the Play-Off rounds next week. We can't believe that the Season is already at an end...proof positive that time truly does fly when you're having fun!
We ended the night with "Field of Dreams" because the girls couldn't remember seeing it and Dad and I felt it too valuable a story for them not to see it. As you can imagine, they loved it and we still love it...so for us, that turned out to be the best way to spend the extra time together. Bradley? Huge fan! He watched all but the last twenty-five, thirty minutes of it before he fell asleep. So for us, it was a win!
But here's the big winner in the day. Though Bradley was not directly involved in this, it is about him, and because of him. Without effort, Madison quietly created a little Awareness and acceptance of her brother at Volleyball. Turns out, last week, the Coach encouraged the girls to open up a bit about their families. A few have asked Madison if Bradley is her brother and they have told her how adorable he is. When her Coach invited the discussion about families, Madison was more than willing to share about hers. My girl is compassionate and passionate, and though I got my information about it from Dad, as he is the one that talked to the Coach...at one point, the Coach had to gently ease the conversation away because her story had a couple of the girls with tears in their eyes. This was not a negative move on his part about her it was more a realization by her team of what Bradley has been through, and his family as a result; tough for us adults, really tough on kids. Madison does not quibble about her brother, she is a smart kid; she knows where he's been, what he's been through, and she has a greater understanding than most realize of how close we have come to being without him if we weren't willing to change everything. And if you were to ask Madison if she would do it all again to keep her brother...she would.
For Madison and Sydney, Bradley is just their brother, and he is pretty awesome to them. Accepting him is like accepting the air to breathe, loving him and wanting to share him with the world is just part of who they are. You can't teach that kind of love, you can encourage tolerance, but that kind of unconditional love comes from deep in the soul. And like to like, soul to soul reaches for each other in these three kids. Together these three kids are the best thing to ever happen to Eric and I, I couldn't be prouder of them. And honestly, I am so Blessed to have this 12 year old daughter to lead the way down a pretty uncertain path, because at the heart of it, hers is strong and full.
Happy Monday all! In our house, it was pretty great indeed!
Sydney is still out of school, week two of the two week break is underway, and I have to say, that little girl is quite willing to jump into Homeschooling if it lets her sleep til eight every morning. She IS, her mother's daughter. Her love of sleep is rivaled only by my own, I have taught her well. Anyway, today she went to see a Physical Therapist who is working with her on teaching her some relaxation techniques and some other muscle retraining techniques to encourage her body to start talking to her brain about stuff a little more and a little better. She did great, and though Eric and I were sort of looking at each other like: "Huh? Why are we here?" We saw potential value, and luckily, it worked out to be true. So as of right now, we believe that though the process will be long, we also believe that the end results will be in her favor.
To jump to Madison...today was a late start day at school. The Principal said that it was a Collaboration day for the teacher's...I think that is school-speak for having a catered breakfast and watching a fun movie with a teacher in it...though I wouldn't quote me on that, I have no true basis to go on here. I just know if I worked there, that is what I would need to motivate me to get up early on a Monday when I don't have students warming the seats in my classroom.
What this meant for us was that Madison didn't have to be to school until 10:05. Yep, that 5 makes a huge difference there and at the end of the day when they walk out of school at 3:05. Also, the school made today Family Fun Night. NO homework was assigned nor were tests scheduled. Kids were invited to unplug and get to know their families again. In the spirit of this, I made French Toast this morning to get Madison ready for her Zombie Fun Run fundraiser for school, Eric created a torn shirt that said: "Run Like a Zombie is Chasing U!"which she thought was quite cool.
After school it was off to Madison's Volleyball game. And as Bucket Lists go...Madison is ready to write a new list after this year. First she made the Volleyball team, then she has played quite a few times, and then tonight she got to start in the 2nd game. They play their last game on Thursday, then they are into the Play-Off rounds next week. We can't believe that the Season is already at an end...proof positive that time truly does fly when you're having fun!
We ended the night with "Field of Dreams" because the girls couldn't remember seeing it and Dad and I felt it too valuable a story for them not to see it. As you can imagine, they loved it and we still love it...so for us, that turned out to be the best way to spend the extra time together. Bradley? Huge fan! He watched all but the last twenty-five, thirty minutes of it before he fell asleep. So for us, it was a win!
But here's the big winner in the day. Though Bradley was not directly involved in this, it is about him, and because of him. Without effort, Madison quietly created a little Awareness and acceptance of her brother at Volleyball. Turns out, last week, the Coach encouraged the girls to open up a bit about their families. A few have asked Madison if Bradley is her brother and they have told her how adorable he is. When her Coach invited the discussion about families, Madison was more than willing to share about hers. My girl is compassionate and passionate, and though I got my information about it from Dad, as he is the one that talked to the Coach...at one point, the Coach had to gently ease the conversation away because her story had a couple of the girls with tears in their eyes. This was not a negative move on his part about her it was more a realization by her team of what Bradley has been through, and his family as a result; tough for us adults, really tough on kids. Madison does not quibble about her brother, she is a smart kid; she knows where he's been, what he's been through, and she has a greater understanding than most realize of how close we have come to being without him if we weren't willing to change everything. And if you were to ask Madison if she would do it all again to keep her brother...she would.
For Madison and Sydney, Bradley is just their brother, and he is pretty awesome to them. Accepting him is like accepting the air to breathe, loving him and wanting to share him with the world is just part of who they are. You can't teach that kind of love, you can encourage tolerance, but that kind of unconditional love comes from deep in the soul. And like to like, soul to soul reaches for each other in these three kids. Together these three kids are the best thing to ever happen to Eric and I, I couldn't be prouder of them. And honestly, I am so Blessed to have this 12 year old daughter to lead the way down a pretty uncertain path, because at the heart of it, hers is strong and full.
Happy Monday all! In our house, it was pretty great indeed!
Sunday, October 26, 2014
Have You Met Bradley?
Day 26: Happy Sunday
Have you seen my little boy? He's four years and ten months of energy, cuteness, awesome and just enough devilry to remind us that he is not really an angel. If you ever listen to country music and know the song by Alabama: "Close Enough to Perfect"? Well, that's him. He isn't easy, he's a tough kid with a medical challenges that baffle the apparent medical board that oversees his care. He's got a personality that likes to be funny, but sometimes he just wants it his way or the highway...and believe me when we clash...there is Hell to pay! He's tough. He's tough to handle sometimes, he's tough on the inside, and he can be tough to predict. When it comes down to it, it can be tough to keep him healthy, it can be tough to pull him through all the medical stuff he goes through. And it's difficult, because there are times that he is just being a tough kid to deal with because he is a little person with this really strong and stubborn personality; and then there are times when he is just a little kid with tough things going on in his body: pain, over stimulation...things like that - and he can't tell you what is going on, nor can you always tell there is something going on until it is too late. And by too late, I mean the point where the parental frustration level has reached a climax. Your kid that was just fine yesterday, this morning, an hour ago...is suddenly not fine. And by the time you have determined that he is not; in fact, just throwing a tantrum, he is in fact, not well...he is miserably frantic, you are guiltily frantic and there is no middle happy place. If you think that is bad, consider the other: he's ill, been ill, you think he's ill...but no, he's just being a little turkey butt of a four year old kid. You want to give him some leeway here, but then you realize he's just pushing you to push back and get his own way. You realize this too late and yet again he has gotten his way in a place where he should not have.
Raise him like you would your other kids. Right...just have to repeat and repeat and repeat. And then sometimes he feels so bad, the lesson has to wait and we will start over from the beginning when he does feel better because he didn't get the repetition and he forgot. No, there's no burnout here. It's super easy to find the endless supply of patience and understanding necessary to make sure that he gets all these lessons down...again and again.
Actually, No. Patience gets frayed, and the understanding grows quiet as you sit and try to regroup, trying to find the ability to get up and try again, and then again...And it can be really, really tough. But here's the way it goes in my world. There are days that knock me down, I get frustrated and I get left feeling lost. I worry and feel overwhelmed because I worry about his today, his tomorrows, they all boil over in my head. When that happens that typically makes me cry, and that inevitably makes me mad, and when I get that mad...I start researching. I read everything I can, I learn something new...I look for another way to get through the muck. Because underneath it all, I know that I love this little boy, and if there is a way I'm going to find it. It may not happen today or tomorrow, but some tomorrow it will or I will either understand why, or I will find peace with the acceptance of why not. At least this is what I try to convince myself.
But I will always fight for this little boy because the light in his eyes, the love that shines from his soul, it fills you up on the inside until it flows out of you. Every fight, every tear, every thing, just every thing...it's worth it for him.
I may want more than I can get, but we're going to keep pushing for the next step because the possibilities in tomorrow are endless. There is no giving up and there is no quitting, there is just finding a way to keep moving, backwards, forwards, sideways...always moving. No matter how tough.
Meet my son, this is my Bradley, and he brings chaos. He brings trouble and worry, and he brings joy and love. He brings everything you expect a four year old whirlwind to bring with him,,,and most things you wouldn't. He isn't a mistake, he IS. He is part of a Plan, and he bring no Regrets. Becoming his Mom was the third greatest miracle in my life, because I definitely got lucky when he chose me to be his Mom.
Have you seen my little boy? He's four years and ten months of energy, cuteness, awesome and just enough devilry to remind us that he is not really an angel. If you ever listen to country music and know the song by Alabama: "Close Enough to Perfect"? Well, that's him. He isn't easy, he's a tough kid with a medical challenges that baffle the apparent medical board that oversees his care. He's got a personality that likes to be funny, but sometimes he just wants it his way or the highway...and believe me when we clash...there is Hell to pay! He's tough. He's tough to handle sometimes, he's tough on the inside, and he can be tough to predict. When it comes down to it, it can be tough to keep him healthy, it can be tough to pull him through all the medical stuff he goes through. And it's difficult, because there are times that he is just being a tough kid to deal with because he is a little person with this really strong and stubborn personality; and then there are times when he is just a little kid with tough things going on in his body: pain, over stimulation...things like that - and he can't tell you what is going on, nor can you always tell there is something going on until it is too late. And by too late, I mean the point where the parental frustration level has reached a climax. Your kid that was just fine yesterday, this morning, an hour ago...is suddenly not fine. And by the time you have determined that he is not; in fact, just throwing a tantrum, he is in fact, not well...he is miserably frantic, you are guiltily frantic and there is no middle happy place. If you think that is bad, consider the other: he's ill, been ill, you think he's ill...but no, he's just being a little turkey butt of a four year old kid. You want to give him some leeway here, but then you realize he's just pushing you to push back and get his own way. You realize this too late and yet again he has gotten his way in a place where he should not have.
Raise him like you would your other kids. Right...just have to repeat and repeat and repeat. And then sometimes he feels so bad, the lesson has to wait and we will start over from the beginning when he does feel better because he didn't get the repetition and he forgot. No, there's no burnout here. It's super easy to find the endless supply of patience and understanding necessary to make sure that he gets all these lessons down...again and again.
Actually, No. Patience gets frayed, and the understanding grows quiet as you sit and try to regroup, trying to find the ability to get up and try again, and then again...And it can be really, really tough. But here's the way it goes in my world. There are days that knock me down, I get frustrated and I get left feeling lost. I worry and feel overwhelmed because I worry about his today, his tomorrows, they all boil over in my head. When that happens that typically makes me cry, and that inevitably makes me mad, and when I get that mad...I start researching. I read everything I can, I learn something new...I look for another way to get through the muck. Because underneath it all, I know that I love this little boy, and if there is a way I'm going to find it. It may not happen today or tomorrow, but some tomorrow it will or I will either understand why, or I will find peace with the acceptance of why not. At least this is what I try to convince myself.
But I will always fight for this little boy because the light in his eyes, the love that shines from his soul, it fills you up on the inside until it flows out of you. Every fight, every tear, every thing, just every thing...it's worth it for him.
I may want more than I can get, but we're going to keep pushing for the next step because the possibilities in tomorrow are endless. There is no giving up and there is no quitting, there is just finding a way to keep moving, backwards, forwards, sideways...always moving. No matter how tough.
Meet my son, this is my Bradley, and he brings chaos. He brings trouble and worry, and he brings joy and love. He brings everything you expect a four year old whirlwind to bring with him,,,and most things you wouldn't. He isn't a mistake, he IS. He is part of a Plan, and he bring no Regrets. Becoming his Mom was the third greatest miracle in my life, because I definitely got lucky when he chose me to be his Mom.
Saturday, October 25, 2014
Mixed Bag Saturday!
I feel like I just got posted in one of those Facebook status updates where I have to sort though the crap of my day to find the three good things about it. It's not quite that bad, it's just one of those days of odd pairings, the juxtaposing of my life to make it feel surreal.
We'll start before the sunrise, because I was overly optimistic that my son would wait and rise with the sun...turns out he was ready much earlier than that. Trade one bleary eyed morning for the little snuggler that I put back to sleep this morning. Bradley is usually a roamer, all over his bed, except this morning when he crawled into my arms to fall back to sleep. Nice!
And we had a pretty good morning, roaming around the living room, playing with toys, watched a little Sofia and some Little Einstein's but was more interested in playing today and didn't notice when mom happily hit the off button. Hurray! For the Win! We were thrilled when Dad got home from class, and he managed to convince a stubborn Bradley that a nap was in his best interest, and mine. With the little boy down, I got a shower and then a small nap while Dad motored off to bring back lunch.
When Bradley did wake up, he wanted to eat and devoured graham crackers, pudding and some cheese. All the crunchy things that helps him chew more and more and better and better, plus a return to cheese, a fave! Here's the negative; he's grinding his teeth now, all the time! Makes me want to grind my teeth...well, you get the idea. And yet, he ate great today! Despite the grinding, he ate a fruit roll-up, the Cheese Puffs, peaches, veggie straws and pudding. The old stand-bys with some new ones. And that makes a triumphant day. He wanted and asked to eat, and I was more than willing to oblige when he did. Lots and lots of crunchies, things he has to munch down on, the things that help him say words later. Here's one of our theories: we think that if he chews something first, real food, the crunchy stuff, then he can take his milk or water and do better with it. We think the problems come when he drinks more of his Pediasure or his water, then he can't get enough through to his stomach without causing a traffic jam at his Esophageal sphincter. Yes I know, a veritable list of scientific phrases, but I think at least one of them was a technical term of something happening with him; most likely 'traffic jam'.
So my Royals had a lead and blew it. My son had a great day eating and then tonight he had an episode of retching, and we think a tummy ache. Coincidence, I think not. Made my tummy hurt watching them lose too! But seriously, we come back to the same thing every time. We don't know for sure why he does what he does, and we don't know how to stop or prevent the episodes. All we have is theory and conjecture with a Hypothesis that may or may not pan out to be something real we can use in order to better take care of him. Trying to get a doctor on your side, well...that's the tough part. It's not that they don't believe us or listen to us, the ones that know us are on board and willing to consider the options. It's the new docs that are the ones that want to push back at us. After our vehement refusal to consider the night time feeds again for Bradley, his Peds GI stopped pushing us on it. She told us that as long as we see weight gain over the next three months then we don't have to try night time or all day feeds. Quite the relief. Let's face it, Normal may only be a Cycle on a Washing Machine, but try washing without it...life can get a little more difficult. Having Bradley run around with a backpack to hold his feeding machine in order to feed him thoughout the day would be a new normal, but not the one we want for him. That's not the one we're fighting for, we see a potential for him and we want to make sure we help him reach it. We canceled an appointment with the Peds GI at Rady's Children's for two reasons: 1. She never called us with test results when she said she would, and 2. Sent recommendations that we reduce oral feeds based on a test that he endured under duress. Less than impressed, we decided to stick to the doctors we know and who know Bradley the best.
So it was one of those good and bad days. Once Bradley cleared out the tummy trouble and that episode, he was willing to go to sleep. For how long is always the mystery. I know that he is wearing me down right now because Eric has been hearing him before me a little more at night lately, and that's unusual, that man can sleep through anything! :-) Still, it is always, always nice being part of a team. So for now, he's taking First Watch while he shoots stuff on his game and unwinds, while I take one for the team and snooze until Bradley lets me know he needs me. Whatever works right?
Day 25 of the Challenge is put to bed, and I with it. Only six more days to spread the word for this year's October. I think the NFL should help spread Awareness and wear Blue and yellow for one game next October. Who's with me?
Night all. Be well!
We'll start before the sunrise, because I was overly optimistic that my son would wait and rise with the sun...turns out he was ready much earlier than that. Trade one bleary eyed morning for the little snuggler that I put back to sleep this morning. Bradley is usually a roamer, all over his bed, except this morning when he crawled into my arms to fall back to sleep. Nice!
And we had a pretty good morning, roaming around the living room, playing with toys, watched a little Sofia and some Little Einstein's but was more interested in playing today and didn't notice when mom happily hit the off button. Hurray! For the Win! We were thrilled when Dad got home from class, and he managed to convince a stubborn Bradley that a nap was in his best interest, and mine. With the little boy down, I got a shower and then a small nap while Dad motored off to bring back lunch.
When Bradley did wake up, he wanted to eat and devoured graham crackers, pudding and some cheese. All the crunchy things that helps him chew more and more and better and better, plus a return to cheese, a fave! Here's the negative; he's grinding his teeth now, all the time! Makes me want to grind my teeth...well, you get the idea. And yet, he ate great today! Despite the grinding, he ate a fruit roll-up, the Cheese Puffs, peaches, veggie straws and pudding. The old stand-bys with some new ones. And that makes a triumphant day. He wanted and asked to eat, and I was more than willing to oblige when he did. Lots and lots of crunchies, things he has to munch down on, the things that help him say words later. Here's one of our theories: we think that if he chews something first, real food, the crunchy stuff, then he can take his milk or water and do better with it. We think the problems come when he drinks more of his Pediasure or his water, then he can't get enough through to his stomach without causing a traffic jam at his Esophageal sphincter. Yes I know, a veritable list of scientific phrases, but I think at least one of them was a technical term of something happening with him; most likely 'traffic jam'.
So my Royals had a lead and blew it. My son had a great day eating and then tonight he had an episode of retching, and we think a tummy ache. Coincidence, I think not. Made my tummy hurt watching them lose too! But seriously, we come back to the same thing every time. We don't know for sure why he does what he does, and we don't know how to stop or prevent the episodes. All we have is theory and conjecture with a Hypothesis that may or may not pan out to be something real we can use in order to better take care of him. Trying to get a doctor on your side, well...that's the tough part. It's not that they don't believe us or listen to us, the ones that know us are on board and willing to consider the options. It's the new docs that are the ones that want to push back at us. After our vehement refusal to consider the night time feeds again for Bradley, his Peds GI stopped pushing us on it. She told us that as long as we see weight gain over the next three months then we don't have to try night time or all day feeds. Quite the relief. Let's face it, Normal may only be a Cycle on a Washing Machine, but try washing without it...life can get a little more difficult. Having Bradley run around with a backpack to hold his feeding machine in order to feed him thoughout the day would be a new normal, but not the one we want for him. That's not the one we're fighting for, we see a potential for him and we want to make sure we help him reach it. We canceled an appointment with the Peds GI at Rady's Children's for two reasons: 1. She never called us with test results when she said she would, and 2. Sent recommendations that we reduce oral feeds based on a test that he endured under duress. Less than impressed, we decided to stick to the doctors we know and who know Bradley the best.
So it was one of those good and bad days. Once Bradley cleared out the tummy trouble and that episode, he was willing to go to sleep. For how long is always the mystery. I know that he is wearing me down right now because Eric has been hearing him before me a little more at night lately, and that's unusual, that man can sleep through anything! :-) Still, it is always, always nice being part of a team. So for now, he's taking First Watch while he shoots stuff on his game and unwinds, while I take one for the team and snooze until Bradley lets me know he needs me. Whatever works right?
Day 25 of the Challenge is put to bed, and I with it. Only six more days to spread the word for this year's October. I think the NFL should help spread Awareness and wear Blue and yellow for one game next October. Who's with me?
Night all. Be well!
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