I wanted to keep today light, but then I caught a story on the IDSC (International Down Syndrome Coalition) site on Facebook. It changed my mind, and in a way I didn't even know about, it helped change the course of my life. It was the story about a family sixty years ago who welcomed a baby girl into the world and learned she had Down syndrome. The doctors were horrible about it then, the lives of these babies were horrific, the terms used to label them, yes. Horrific! It's the password of the day - horrible. But here's the part that would shape the path that would wind down to intersect with my life: Her parents ignored her doctors and they decided to take her home and let her grow surrounded by an incredible love that would give them five precious years before her weak little heart took her Home to Jesus.
They took her home.
They loved her.
They grieved her.
They felt Blessed that she chose them.
I don't know them. But they aren't the only ones that shaped the future for me and people like me. This family, and incredible families like them chose to defy doctors and society and said no to Institutions and said yes to a family. In comparison, our lives are so much easier with our kids, medicine has not only caught up but there are quite a few doctors that are now invested in out kids health as much as we are. Now you can find doctors that are saying that it's okay, not spouting drivel of ruination and horror. But make no mistake, you have to choose wisely if you have the control, because there are just as many doctors out there that fall on the horror side of things.
We didn't have much control over doctors when I was pregnant with Bradley. But on that day I was worried about a spot on my back, my doctor was not concerned about it, but he was concerned about me being worried and didn't want me stressing myself...so he sent me to Dermatology - it saved my life. Thank you Doc! And on that last day, the day Bradley was born, I didn't know my Midwife. I knew she had kind eyes, I knew she let me have a meal and then an early epidural. She was patient and coaxed my son from the womb even as he fought to stay. She respected my information about the quick arrival of Sydney, and planned accordingly. And in that moment when my son was clear, she laughed with joy as she told me to "Open your eyes and look at your son!" It was over, he was here - it was time for all the physical pain to go away.
And here is where the decisions from one incredible family sixty years ago rippled through time, space, life to settle into the heart of this woman to share the news that our son had the characteristics of Down syndrome. The message was that the child we had expected was gone and in his place was this precious boy that might take longer to get where he needs to go; but it would be okay.
The message from every medical person that walked through our doors was simply, it will be okay. And though no one said it, but I heard her words like an echo: "Open your eyes and look at your son" seemed to sing through every person. The underlying truth was that our world had changed in a moment, but everyone was determined to get us through the shock and the fear until we could get our feet under us, get the world to stop shaking and we might come out on the other side in one piece. But no one ever suggested Bradley not come home. No one ever suggested that Bradley wouldn't be great. A doctor would later look me in the eye and with a certainty that I felt to my soul would tell us that "He will amaze you!" It brought tears to my eyes because I believed him with everything in me.
The lives lived before us led to these moments that set me on a path that is wonderful and challenging. Their pain and their conviction to love shaped lives and changed minds. Their belief has helped some doctors to choose life and love not stereotypes and prejudice. The path has brought us to here, where our doctors support us every step, and love our son. Believe me when I say, we know how lucky we are and what a gift this is.
Open your eyes and look at your son! He will amaze you! I thought these words were just meant for me, but I think maybe her words circle Bradley and encourages others to: open their eyes and see my son, for he will amaze them!
Thank you to those who carved the way through the mountain. We'll keep working and pushing forward, all because you saw your children with love and hope and never gave up. We will never give up! I will use the same lens to see my son and I will fight to give him a life worth living and a life he truly deserves!
Awareness....yes...long before this October a small crew on a Navy Base in Japan practiced Awareness and Acceptance! "31 for 21: Challenge" still going strong!
Good night all!
Friday, October 18, 2013
Thursday, October 17, 2013
Almost time to Buddy Walk!
We're headed to San Diego in the morning, we'll stay with my Dad and join in the San Diego Buddy Walk on Saturday. We've done this every year for the last four years. The first year we did it because we were in San Diego at the time. When we moved to Ventura County the next year we thought we could do it up here, but there were two reasons we didn't. The first was that the closest ones up here are in Santa Barbara or Anaheim...both closer than San Diego, but Santa Barbara does theirs in June and Anaheim in November (usually during Down syndrome Awareness Week). We couldn't do June, Bradley was too sick to have surgery at the end of May, so we were all just barely hanging on in June. Now we just forget about June. By the time Fall came around, Bradley was too sick not to have surgery...so we did, and it was our family and friends that came out to be with us at Balboa Hospital in San Diego, that kept us going and helped keep us on our feet through it. We knew that's where we needed to be for the Buddy Walk.
And that's how it's gone. Our Team started as the ones that worked with Eric in Atsugi, they are our core team. They are the ones that have been there from Day One of Bradley's life, and we are honored that every year they keep coming out. So yeah, San Diego is where we are supposed to do this. Last year we thought we were doing our last one, the Navy only gives you a few years in one spot and then people get transferred all over the world. It was time for our loved ones to be transferred, but strangely...perhaps because of Fate, most of that initial group is still in town and still up for at least this one more Buddy Walk. We appreciate how fickle fate can be, we get it...we've seen it turn on a dime against us, and sometimes for us...so we don't argue with Fate, and we don't bargain too much. We just accept it for what it is.
This year, we've been given a gift. These amazing people that love Bradley because he belongs to us, because he's pretty great on his own, they are making a point to spend a few hours with us on Saturday. Along the way, we have some new walkers coming as well, all have touched our lives in the most poignant of ways, and they have worked very hard to arrange lives around a special Saturday in October.
It's super easy to get emotional about Buddy Walk Saturdays, and I say easy, because you don't get much wimpier than me about stuff like this. Every year is a triumph, a chance to see how far he has come and let those that love him and us, see that...spend those hours to catch up and reconnect. It's a digital world and a world that moves so much faster than we do in our house, so keeping in touch is never easy. But these are the people that know when the Buddy Walk is before I do...the ones that send me e-mails or text messages to see if the Team is up and running yet. Connecting is not just a big deal for me, it's a big deal for all of us. And that feels even better!
Though I'm a little nervous about the new venue, I know that weather wise it will be an amazing day and emotion wise it will be all the best kind filling my cup to overflow...refilling my soul to face a whole new year, ready for whatever comes next.
So this message is to Bradley's Buddy Brigade - past, present, and future - the ones that will be there on Saturday, the ones who have been there, the ones that can't be there this time: We love you! We appreciate you! You are the reason I felt strongly enough to start blogging in this Challenge least year, and you are the reason I kept going for the whole month. I wanted to share Bradley's story and you let me know that his was a story worth sharing. Because you believed in me last year, I jumped into the blog Challenge again this year, so thanks! It's emotional, it's difficult, it's cathartic to share Bradley's story and let the world know that we're okay, that we're better than okay - maybe because of that extra chromosome! God Bless this Team and we can't wait to hug you all on Saturday, and send special thoughts to everyone else who will be thinking about us as we walk! It's going to be another really great year! The only down-sides are those that can't make it, and a new venue means no amazing Japanese lunch like every other year. Oh well! We will prevail! ;-) Apparently, this year it is an Oktoberfest and that means there will be beer, that has to be a bonus for some right? :-) HAHA!!!
Be well and have a great night all!
And that's how it's gone. Our Team started as the ones that worked with Eric in Atsugi, they are our core team. They are the ones that have been there from Day One of Bradley's life, and we are honored that every year they keep coming out. So yeah, San Diego is where we are supposed to do this. Last year we thought we were doing our last one, the Navy only gives you a few years in one spot and then people get transferred all over the world. It was time for our loved ones to be transferred, but strangely...perhaps because of Fate, most of that initial group is still in town and still up for at least this one more Buddy Walk. We appreciate how fickle fate can be, we get it...we've seen it turn on a dime against us, and sometimes for us...so we don't argue with Fate, and we don't bargain too much. We just accept it for what it is.
This year, we've been given a gift. These amazing people that love Bradley because he belongs to us, because he's pretty great on his own, they are making a point to spend a few hours with us on Saturday. Along the way, we have some new walkers coming as well, all have touched our lives in the most poignant of ways, and they have worked very hard to arrange lives around a special Saturday in October.
It's super easy to get emotional about Buddy Walk Saturdays, and I say easy, because you don't get much wimpier than me about stuff like this. Every year is a triumph, a chance to see how far he has come and let those that love him and us, see that...spend those hours to catch up and reconnect. It's a digital world and a world that moves so much faster than we do in our house, so keeping in touch is never easy. But these are the people that know when the Buddy Walk is before I do...the ones that send me e-mails or text messages to see if the Team is up and running yet. Connecting is not just a big deal for me, it's a big deal for all of us. And that feels even better!
Though I'm a little nervous about the new venue, I know that weather wise it will be an amazing day and emotion wise it will be all the best kind filling my cup to overflow...refilling my soul to face a whole new year, ready for whatever comes next.
So this message is to Bradley's Buddy Brigade - past, present, and future - the ones that will be there on Saturday, the ones who have been there, the ones that can't be there this time: We love you! We appreciate you! You are the reason I felt strongly enough to start blogging in this Challenge least year, and you are the reason I kept going for the whole month. I wanted to share Bradley's story and you let me know that his was a story worth sharing. Because you believed in me last year, I jumped into the blog Challenge again this year, so thanks! It's emotional, it's difficult, it's cathartic to share Bradley's story and let the world know that we're okay, that we're better than okay - maybe because of that extra chromosome! God Bless this Team and we can't wait to hug you all on Saturday, and send special thoughts to everyone else who will be thinking about us as we walk! It's going to be another really great year! The only down-sides are those that can't make it, and a new venue means no amazing Japanese lunch like every other year. Oh well! We will prevail! ;-) Apparently, this year it is an Oktoberfest and that means there will be beer, that has to be a bonus for some right? :-) HAHA!!!
Be well and have a great night all!
Wednesday, October 16, 2013
Following the Research
About mid-year we got word through the research grapevine that scientists had figured out how to turn off the extra Chromosome thereby turning off Down syndrome. When I read this research I saw key facts, some others did too, some others triggered on key emotions. Though the facts are out there and the potential is incredible, the truth of what science could be capable of is a long way off. I want to believe that it could happen in my son's lifetime, I really do. But before you condemn me for wanting to change my son, let's talk about that research.
Scientist have created an abnormal gene and chromosome anomaly in mice. Yes those furry little white mice almost everyone is willing to cuddle. Anyway, Down syndrome is not a mouse genetic disorder. In mouse speak that means it doesn't exist, but scientists have found a way to replicate it in mice to further research in humans. Let's discuss that part another day. So what did science do? Scientists have determined a way to turn off the extra chromosome in mice. Well, yeah!
This was the news that started a Hurricane of emotion as both sides of a debate no one thought they'd ever be arguing out loud took wing. The ethical debate, the eugenics debate, and everything in between seemed to come to head all at once. You see we're already fighting countries like New Zealand and Belgium to merely protect these extra chromosome kids...their laws and practices are frightening and make me wonder if I would ever take my son to either place to visit...I don't seem them as warm and welcoming. We're talking about countries with lawsuits against doctors because the parents birthed a Down syndrome child and wanted millions from the government to make up for it; I wish I were making this up. We're talking about countries that want laws in place to destroy a child upon the delivery and the realization that the child has Down syndrome. Again, not making it up. So then throw into the mix this sudden question of what would you do if you could suddenly turn off your child's extra chromosome? Chaos and fear.
The debates are heated, people are very emotional about this idea. They should be, you're talking about advocates for those that may not be able to advocate for themselves. You're talking about people. But sometimes putting the cart before the horse can have dire consequences, sometimes you have to step back and look at the truth in the science before you plan an attack.
They turned off a chromosome. In a mouse. In a mouse that didn't naturally create an extra chromosome, and science turned it off. There is a giant leap between mouse and human, there is a giant leap between what we can and what we might be able to do. But the key to this research was this: only at conception. They could only turn it off at conception. What the rest get is the potential for drug therapies that might help improve cognitive ability in the future. Maybe. Maybe it will help with short term memory, help with a person being able to better live on his or her own, better able to keep up in a fast paced world. Maybe become as jaded as the rest of us.
It's that maybe stuff that scares folks the most I think. That maybe if the one we love understands more and handles more they will lose that spark in them that is so pure. But is it right for me to decide that Bradley shouldn't be smarter, and more independent because he might suffer the mood swings that my other two kids suffer?
Here's the thing. Genetic testing is going to eradicate Down syndrome...and a lot of other syndromes with it. Parents are going to know at 12 weeks whether they are carrying a child with Down syndrome, at 12 weeks, a lot of us haven't told anyone yet...at 12 weeks...things just happen. There is less guilt to abort a child at 12 weeks because there are women who spontaneously suffer through the loss of a fetus at 12 weeks...and up...and often no one ever knows why. Perhaps that child had a chromosomal defect that was not viable...perhaps. But doesn't that make the ones that are viable, the ones that are born and come out to face a harsh word that much more important, more special? When you think about what it took for a child to survive a pregnancy with an extra chromosome, perhaps we should be delving into who they are and how they managed to survive. The very fact that these babies survive and are born tells you something: that God wants them here...or if it makes you happier, that science is not opposed to their place here.
I don't know what would happen if scientists could turn off the extra chromosome...if they truly can do that it would happen before a woman knows she's pregnant so by that she would never know if her child had Down syndrome or not. So in theory no more babies with Down syndrome would be aborted because no more babies are being born with Down syndrome. But scientists are saying that they can't turn it all the way off. Interesting. What do you do then? Are you willing to take a baby that has a little bit of Down syndrome? Could that ever really happen? Would it be more likely to have a baby with Down syndrome that has a stronger cognitive development, perhaps less likely to develop so many of the health issues that our children face. If you can help develop the digestive system better and wipe out Leukemia all together, I'm in.
I've said it before, and I stand by it now. I'm waiting for more answers. I don't know what kind of effect this idea or the possible drug therapies could have for Bradley. But I know this, Bradley is who he is. Who he is going to be is still going to carry this spark that he has inside of him. Improving his brain function, improving his health - those are hard to argue against. Do I think he'll acquire more attitude and independence? Well, let's hope so. My typically developing girls get bullied, and I am sure that Bradley will feel some of the nasty effects of it as he gets older and gets into school too. We are valiantly trying to teach the girls how to protect themselves, how to respond with grace, how to respond with strength - and these are difficult lessons that they are learning. But the girls are holding their own, I am so proud of them. Do I wish I could make sure that Bradley has the same success? You bet I do...but I worry. I wouldn't be opposed to him having the strength, the presence of self and mind to handle the bullies that might, and probably will, come his way...and when the time comes he might do just as well as the girls, but we can only wait and see.
I fully admit this now - I want my cake and I want to eat it too. I want all the positives from this research with none of the bad. I want to skip all the way to the end where there is a rainbow waiting and sunshine and maybe even a pot of gold...I want it all, I want it like that. That's not what I'll get. Down the road, I will be weighing for and against this research, this future. I don't know which side I will come down on, but whatever it is...I can only pray it will come down to the most positive life and future that Bradley can have. Bradley has a beautiful soul, it's unbreakable, it's perfect. And it's not going to change. And having an extra chromosome is not what gives him this soul...it's just him. I say that because I can tell you without a shadow of doubt that my Madison has a beautiful soul as well, and it is perfect. She has a depth for compassion that is deeper than oceans. Dip into her soul and you will come out feeling refreshed and renewed. My Sydney has a beautiful soul, and it is perfect. Sydney will carry you with her humor, her logic, the way she looks at the world - she will do that for you even when you feel like you can't take another step, she will do that for you - all you have to do is listen. Bradley's extra chromosome is merely a magnet that draws people to him, a magnet that draws people away from what they fear into a little boy's warm blue eyes and sweet smile. All that is who he is, he is here for a reason, and maybe it's to try to teach me to be a better person, I don't know. But everyday, I sit at his knee and absorb what ever new lesson he has to teach me today.
I don't know what the future will hold, no one does. When the time comes we can only hope to be guided by love AND truth...not lost on the path to one and not the other. Until then, we'll keep up on our science and the research...yet another Challenge for us. Thanks for stopping in, putting Day 16 of the "31 for 21: Challenge" to rest. Have a great night!
Scientist have created an abnormal gene and chromosome anomaly in mice. Yes those furry little white mice almost everyone is willing to cuddle. Anyway, Down syndrome is not a mouse genetic disorder. In mouse speak that means it doesn't exist, but scientists have found a way to replicate it in mice to further research in humans. Let's discuss that part another day. So what did science do? Scientists have determined a way to turn off the extra chromosome in mice. Well, yeah!
This was the news that started a Hurricane of emotion as both sides of a debate no one thought they'd ever be arguing out loud took wing. The ethical debate, the eugenics debate, and everything in between seemed to come to head all at once. You see we're already fighting countries like New Zealand and Belgium to merely protect these extra chromosome kids...their laws and practices are frightening and make me wonder if I would ever take my son to either place to visit...I don't seem them as warm and welcoming. We're talking about countries with lawsuits against doctors because the parents birthed a Down syndrome child and wanted millions from the government to make up for it; I wish I were making this up. We're talking about countries that want laws in place to destroy a child upon the delivery and the realization that the child has Down syndrome. Again, not making it up. So then throw into the mix this sudden question of what would you do if you could suddenly turn off your child's extra chromosome? Chaos and fear.
The debates are heated, people are very emotional about this idea. They should be, you're talking about advocates for those that may not be able to advocate for themselves. You're talking about people. But sometimes putting the cart before the horse can have dire consequences, sometimes you have to step back and look at the truth in the science before you plan an attack.
They turned off a chromosome. In a mouse. In a mouse that didn't naturally create an extra chromosome, and science turned it off. There is a giant leap between mouse and human, there is a giant leap between what we can and what we might be able to do. But the key to this research was this: only at conception. They could only turn it off at conception. What the rest get is the potential for drug therapies that might help improve cognitive ability in the future. Maybe. Maybe it will help with short term memory, help with a person being able to better live on his or her own, better able to keep up in a fast paced world. Maybe become as jaded as the rest of us.
It's that maybe stuff that scares folks the most I think. That maybe if the one we love understands more and handles more they will lose that spark in them that is so pure. But is it right for me to decide that Bradley shouldn't be smarter, and more independent because he might suffer the mood swings that my other two kids suffer?
Here's the thing. Genetic testing is going to eradicate Down syndrome...and a lot of other syndromes with it. Parents are going to know at 12 weeks whether they are carrying a child with Down syndrome, at 12 weeks, a lot of us haven't told anyone yet...at 12 weeks...things just happen. There is less guilt to abort a child at 12 weeks because there are women who spontaneously suffer through the loss of a fetus at 12 weeks...and up...and often no one ever knows why. Perhaps that child had a chromosomal defect that was not viable...perhaps. But doesn't that make the ones that are viable, the ones that are born and come out to face a harsh word that much more important, more special? When you think about what it took for a child to survive a pregnancy with an extra chromosome, perhaps we should be delving into who they are and how they managed to survive. The very fact that these babies survive and are born tells you something: that God wants them here...or if it makes you happier, that science is not opposed to their place here.
I don't know what would happen if scientists could turn off the extra chromosome...if they truly can do that it would happen before a woman knows she's pregnant so by that she would never know if her child had Down syndrome or not. So in theory no more babies with Down syndrome would be aborted because no more babies are being born with Down syndrome. But scientists are saying that they can't turn it all the way off. Interesting. What do you do then? Are you willing to take a baby that has a little bit of Down syndrome? Could that ever really happen? Would it be more likely to have a baby with Down syndrome that has a stronger cognitive development, perhaps less likely to develop so many of the health issues that our children face. If you can help develop the digestive system better and wipe out Leukemia all together, I'm in.
I've said it before, and I stand by it now. I'm waiting for more answers. I don't know what kind of effect this idea or the possible drug therapies could have for Bradley. But I know this, Bradley is who he is. Who he is going to be is still going to carry this spark that he has inside of him. Improving his brain function, improving his health - those are hard to argue against. Do I think he'll acquire more attitude and independence? Well, let's hope so. My typically developing girls get bullied, and I am sure that Bradley will feel some of the nasty effects of it as he gets older and gets into school too. We are valiantly trying to teach the girls how to protect themselves, how to respond with grace, how to respond with strength - and these are difficult lessons that they are learning. But the girls are holding their own, I am so proud of them. Do I wish I could make sure that Bradley has the same success? You bet I do...but I worry. I wouldn't be opposed to him having the strength, the presence of self and mind to handle the bullies that might, and probably will, come his way...and when the time comes he might do just as well as the girls, but we can only wait and see.
I fully admit this now - I want my cake and I want to eat it too. I want all the positives from this research with none of the bad. I want to skip all the way to the end where there is a rainbow waiting and sunshine and maybe even a pot of gold...I want it all, I want it like that. That's not what I'll get. Down the road, I will be weighing for and against this research, this future. I don't know which side I will come down on, but whatever it is...I can only pray it will come down to the most positive life and future that Bradley can have. Bradley has a beautiful soul, it's unbreakable, it's perfect. And it's not going to change. And having an extra chromosome is not what gives him this soul...it's just him. I say that because I can tell you without a shadow of doubt that my Madison has a beautiful soul as well, and it is perfect. She has a depth for compassion that is deeper than oceans. Dip into her soul and you will come out feeling refreshed and renewed. My Sydney has a beautiful soul, and it is perfect. Sydney will carry you with her humor, her logic, the way she looks at the world - she will do that for you even when you feel like you can't take another step, she will do that for you - all you have to do is listen. Bradley's extra chromosome is merely a magnet that draws people to him, a magnet that draws people away from what they fear into a little boy's warm blue eyes and sweet smile. All that is who he is, he is here for a reason, and maybe it's to try to teach me to be a better person, I don't know. But everyday, I sit at his knee and absorb what ever new lesson he has to teach me today.
I don't know what the future will hold, no one does. When the time comes we can only hope to be guided by love AND truth...not lost on the path to one and not the other. Until then, we'll keep up on our science and the research...yet another Challenge for us. Thanks for stopping in, putting Day 16 of the "31 for 21: Challenge" to rest. Have a great night!
Tuesday, October 15, 2013
Stretching the Truth
Little white lies...I think I tell them every day, I don't want too, but they slip out anyway. It starts with stuff like "Mom is Santa Claus real?"
And I hedge with "Santa Claus is what you believe."
And I thought maybe I should tell them the truth, and so I tried, I really did. When the Tooth Fairy missed them I tried to tell them, "You know there is no Tooth Fairy, it's just me and Dad." You know what I got in return?
I got laughter, "You're funny Mom, she'll be here tonight." And so she came that night and my wallet was a bit lighter the next morning. So me and the Tooth Fairy have had a discussion, no teeth can fall out during this furlough. Everyone seems in compliance so, so far so good.
And it's not that I think that Madison at least hasn't been clued in at school, I'm sure she has. She knows deep down that the things of magic and belief are not in fact real...I think. I mean she has an idea about the truth, she'll let slip that certain Christmas presents from Santa...she'll say they are from her parents. So she knows, but she won't admit it. So I guess she's telling me a little white lie back when she doesn't admit all she knows. Sydney? Who knows what that kid is thinking. She's so logical that I know she must have her doubts, but this is the kid that has a book on Faeries that she is certain is real research...so she may need more time.
And believe me, it's not that I haven't looked at Madison and even Sydney and been tempted to spill the beans, to let the words come tumbling out. I know that at some point the kids at school will tease them if we aren't careful...so I say a lot of things like: "It's what you believe and sometimes you have to believe in the idea of something..." Blah, blah, blah... I promise politics are not in my future.
But why do I hedge, why do I have such a problem? Part of me doesn't want to be the one to take the magic away. There is a large part of me that doesn't want to be responsible for the complete loss of the magic that comes with belief. And then there is part of me that hopes and prays that if they still believe in this kind of magic then they'll still believe me when I tell them that their brother is all right, or is going to be all right. I have this soul deep fear that if they stop believing in one then they'll stop believing in the other and I need them to believe. I need to believe.
With all the genetic testing and the research going on right now to do everything to stop Down syndrome, I think a part of me is searching for a way to save my son, to keep him from being the last generation of children to be born with Down syndrome. I don't want him to be alone and I don't want the research into how to improve his health and quality of life to end. It's really that simple. I want him to be okay, I want others to believe that he is okay as a child with an extra chromosome and worth the work and effort to keep researching into ways to make his life better - today and tomorrow...all of his tomorrows.
At the same time, I have a son who is vulnerable and fragile in his immune system. I can try to hide in the world of the positive for days on end, focus on all that is going right, I can mark the days on the calendar for all the ones that have him healthy. I can do that. But then he'll have a seizure and I have to look at my girls and they're asking me if their brother is going to die, and all I can do is say: "No, the paramedics are here, and we're taking him to the hospital. Everyone is going to do everything they can to keep him here. We'll get him through this." And inside I pray that I'm not lying and that there is not some reckoning coming with my name on it that I won't survive.
He is still having esophagus issues, it's effecting him in some negative ways. Things are burning, things there might be damaged...we're trying new medications. We think that that's what's going on but we aren't sure. We know he's retching more and where venting off the pressure in his gut would work before it isn't working so much now. So we believe that the pain in his esophagus is the issue - but the retching can unsew a fundoplication and I promise you, that makes you very nervous. And when the girls are staring at me, Madison with tears on her cheeks, Sydney with her hands wringing and tears in her eyes: both asking me if he's all right, I'm looking at them telling them: "He will be, just wait, we just have to calm this down and I think he will be." And the whole time I'm praying that we can calm it down this time. That this will be the last time, though I know it won't be. Even now, I hear him with this cough, this rattling that comes from fluid going down the wrong way, phlegm maybe getting caught...not sure. He doesn't quite know how to clear it out, but my Bradley is a fighter, and he'll keep fighting. He'll keep fighting and I'll keep right on beside him, pushing him forward, pushing him back towards the side of health and away from illness. I just hate to lose, and every time he gets sick it's a fight to bring him back; to win each little war. I can't live with anything less.
So I guess I don't lie to them as much as I thought, I guess it's more of a stretch of the truth. I ask them to suspend their disbelief and I try to make whatever I say something they can live with if I'm wrong. I always tell them we can only pray and hope and do all we can to keep Bradley okay. Sitting beside Sydney in her bed as she tells me she is afraid for Bradley, that he'll have another seizure and die, I hug her close and make a plan. I tell her how we have a video monitor (a new one that works now and is not water-logged), so Dad and I can see him. If the seizure happens, we can get there, and now we have a medication to stop it if it goes on too long...so we have a plan to make sure that Bradley is all right. That's all I can say, it's all I can do, and it's what she needs to know so she can sleep at night, it's what I need to know so I can sleep at night...and that's what I can live with.
And I hedge with "Santa Claus is what you believe."
And I thought maybe I should tell them the truth, and so I tried, I really did. When the Tooth Fairy missed them I tried to tell them, "You know there is no Tooth Fairy, it's just me and Dad." You know what I got in return?
I got laughter, "You're funny Mom, she'll be here tonight." And so she came that night and my wallet was a bit lighter the next morning. So me and the Tooth Fairy have had a discussion, no teeth can fall out during this furlough. Everyone seems in compliance so, so far so good.
And it's not that I think that Madison at least hasn't been clued in at school, I'm sure she has. She knows deep down that the things of magic and belief are not in fact real...I think. I mean she has an idea about the truth, she'll let slip that certain Christmas presents from Santa...she'll say they are from her parents. So she knows, but she won't admit it. So I guess she's telling me a little white lie back when she doesn't admit all she knows. Sydney? Who knows what that kid is thinking. She's so logical that I know she must have her doubts, but this is the kid that has a book on Faeries that she is certain is real research...so she may need more time.
And believe me, it's not that I haven't looked at Madison and even Sydney and been tempted to spill the beans, to let the words come tumbling out. I know that at some point the kids at school will tease them if we aren't careful...so I say a lot of things like: "It's what you believe and sometimes you have to believe in the idea of something..." Blah, blah, blah... I promise politics are not in my future.
But why do I hedge, why do I have such a problem? Part of me doesn't want to be the one to take the magic away. There is a large part of me that doesn't want to be responsible for the complete loss of the magic that comes with belief. And then there is part of me that hopes and prays that if they still believe in this kind of magic then they'll still believe me when I tell them that their brother is all right, or is going to be all right. I have this soul deep fear that if they stop believing in one then they'll stop believing in the other and I need them to believe. I need to believe.
With all the genetic testing and the research going on right now to do everything to stop Down syndrome, I think a part of me is searching for a way to save my son, to keep him from being the last generation of children to be born with Down syndrome. I don't want him to be alone and I don't want the research into how to improve his health and quality of life to end. It's really that simple. I want him to be okay, I want others to believe that he is okay as a child with an extra chromosome and worth the work and effort to keep researching into ways to make his life better - today and tomorrow...all of his tomorrows.
At the same time, I have a son who is vulnerable and fragile in his immune system. I can try to hide in the world of the positive for days on end, focus on all that is going right, I can mark the days on the calendar for all the ones that have him healthy. I can do that. But then he'll have a seizure and I have to look at my girls and they're asking me if their brother is going to die, and all I can do is say: "No, the paramedics are here, and we're taking him to the hospital. Everyone is going to do everything they can to keep him here. We'll get him through this." And inside I pray that I'm not lying and that there is not some reckoning coming with my name on it that I won't survive.
He is still having esophagus issues, it's effecting him in some negative ways. Things are burning, things there might be damaged...we're trying new medications. We think that that's what's going on but we aren't sure. We know he's retching more and where venting off the pressure in his gut would work before it isn't working so much now. So we believe that the pain in his esophagus is the issue - but the retching can unsew a fundoplication and I promise you, that makes you very nervous. And when the girls are staring at me, Madison with tears on her cheeks, Sydney with her hands wringing and tears in her eyes: both asking me if he's all right, I'm looking at them telling them: "He will be, just wait, we just have to calm this down and I think he will be." And the whole time I'm praying that we can calm it down this time. That this will be the last time, though I know it won't be. Even now, I hear him with this cough, this rattling that comes from fluid going down the wrong way, phlegm maybe getting caught...not sure. He doesn't quite know how to clear it out, but my Bradley is a fighter, and he'll keep fighting. He'll keep fighting and I'll keep right on beside him, pushing him forward, pushing him back towards the side of health and away from illness. I just hate to lose, and every time he gets sick it's a fight to bring him back; to win each little war. I can't live with anything less.
So I guess I don't lie to them as much as I thought, I guess it's more of a stretch of the truth. I ask them to suspend their disbelief and I try to make whatever I say something they can live with if I'm wrong. I always tell them we can only pray and hope and do all we can to keep Bradley okay. Sitting beside Sydney in her bed as she tells me she is afraid for Bradley, that he'll have another seizure and die, I hug her close and make a plan. I tell her how we have a video monitor (a new one that works now and is not water-logged), so Dad and I can see him. If the seizure happens, we can get there, and now we have a medication to stop it if it goes on too long...so we have a plan to make sure that Bradley is all right. That's all I can say, it's all I can do, and it's what she needs to know so she can sleep at night, it's what I need to know so I can sleep at night...and that's what I can live with.
Monday, October 14, 2013
Trying to Find a Balance
It's really hard to learn patience, and harder to muster patience when you're tired and frustrated. I have brilliant children. Madison and Sydney are so incredibly smart, I don't even know where to truly begin to explain it. They are both smart beyond their years so that they are not always capable of the maturity and correct emotion to apply to all that they understand.
A perfect example, Sydney came out of her room last night to interrupt "The Walking Dead" (we had to pause and change the channel cause it was mid-Zombie attack...talk about those nightmares). Anyway, she suddenly was terrified about Halloween. Her words: "Seems to me that Halloween is the perfect time for someone to snatch a child, so I think I don't want to go out on Halloween night."
Eric tried to tease her with the knowledge that no trick or treating brings no candy...but that didn't phase her. So this was a serious concern of hers and it was keeping her awake. Now we have the serious talk with her. I pointed out to her that we never let her and sister go out alone, that we are always standing at the edge of the sidewalk watching and waiting for her and her sister to come back down the walk. And, if Bradley is willing to walk a bit, one of us is standing with him, with both of them, at the door. We could get closer but not without letting the world see what overprotective hovering parents we truly are and really, honestly, try not to be. And then I mentioned that I thought it wasn't a great night for it because there ARE so many parents out and about, there are so many people out and about and everyone is watching each other and watching the kids. We are more vigilant because we worry that someone will take the opportunity to do something terrible.
It used to be I was worried someone was going to jump out and scare me on a harmless prank...and then I had kids, and now I look to make sure someone doesn't scare them too bad...or worse...reach out and grab them. But these are things I never tell my kids...I don't plant these things in their minds because it keeps Sydney awake at night. But TV likes to make sure they think of this stuff, and so do books. So as soon as you think you are being a good parent by limiting the TV, they come out just as freaked out because they read that book about the thing, and... well you get the idea. So while I am trying to ease the fears of my nine-year-old, I am also trying to muster the patience to teach them both something important.
Cooking. I'm trying to let them into the kitchen with me to cook more. And I know I just told you that they are brilliant, and they are...but sometimes the common sense gene skips a generation... or at least checks out for a few hours at a time. So cooking with them is like taking a walk on the wild side, always. You ask them to stir and they do...hard enough to send it all out of the bowl. Gentle, turns out they barely touch the food in the bowl. Half the time I spend trying to figure out how best to explain to them how to perform a task because they are both so literal and precise...which is great for cooking but difficult to explain in the kitchen.
Still, Madison tackled Meatloaf last night, and Sydney tackled Tamale Pie tonight. Being older, Madison got the more hands on meal that after a few times she can create on her own. She also created mashed potatoes and cooked a vegetable. Sydney sauteed onions and stirred the meat, then she got to put the cornbread together for the top; Mom did most of the heavy lifting here. But as much as it was frustrating at times to search through every brain cell I had to find the right way to explain to them what I needed or how I needed them to perform a task, they were quite good at it. The true lesson was for me actually. It was a lesson in letting go. You see I forget that nine times out of ten a kid will eat whatever she helps make, if it's not perfect to the adult palate it's truly okay because it's okay to their nine and eleven year old taste buds. And so on... So, maybe Madison's meatloaf had way more garlic than anyone wants in their meatloaf, but it still looked, felt, and tasted like meatloaf, albeit a more garlicky rendition. And sure Sydney's cornbread turned out horrible, but through no fault of her own, I think (never buying that brand again!). She followed the directions on the mix and from Mom, but it just didn't turn out well in the end. But here's the funny thing about it all. Last night, Madison had two helpings of meatloaf and tonight, Sydney had two helpings of tamale pie. And looking back, I realize that the spaghetti that Madison made last Thursday, they both had two helpings of that even though it was a little blander than what I would normally go for. So perhaps the picky one is me, not the girls at all - or perhaps they just want to eat their own creations. Perhaps mom's days in the kitchen are numbered??? Wishful thinking aside, maybe a bit premature, but what isn't is me letting go of the need to make sure that everyone loves dinner. After striving so hard to make it taste perfect, I realize that sometimes perfect means different things to different people. When the girls make dinner it's perfect because they got to make it. When I make dinner, it's perfect because Bradley ate some of it and the girls ate all of their meal. To me that's awesome, and if someone walks away without despising her sister, then it's been an even better night.
Right now life continues to be about what I can control not what I cannot. Bradley is not doing super great, but he is doing okay and I control everything that goes in his mouth. I desperately keep track of everything he can and cannot have; every bite he takes has a calorie count and I keep a general tally in my head because tracking every single one was driving me crazy. So here's the tough part, there are only certain ways that he will eat certain foods...so I have to find a way to give the girls reins to make every meal an adventure as they learn to master this world of cooking, while keeping enough the same to keep him eating.
Two nights a week I have to have a safe and viable Plan B for Bradley's meal in a way that neither girl figures out what I'm doing. I also have to learn all I can from these sessions with them and retain it all so that when Bradley is old enough to help me cook I'll be ready. Because this is what I know, no matter how much I struggle with this, I will master this with the girls and with Bradley because all three will know how to take care of themselves out in the world. It doesn't matter if they wear all pink socks and eat super garlic laden food...the point is that they will survive on their own. From Madison to Sydney to Bradley...these birds are going to leave this nest and make their way in the world without me, I believe it so that is what we are working towards. I wouldn't mind the birds hanging out at the nest as much as possible...so I intend to make sure that cooking gets much better with all three of them! ;-)
Awareness, then Acceptance and that will encourage Independence! Day 14 of the Challenge settles into the books! Now to see how my Chargers are doing on Monday Night Football...talk about challenges! ;-)
A perfect example, Sydney came out of her room last night to interrupt "The Walking Dead" (we had to pause and change the channel cause it was mid-Zombie attack...talk about those nightmares). Anyway, she suddenly was terrified about Halloween. Her words: "Seems to me that Halloween is the perfect time for someone to snatch a child, so I think I don't want to go out on Halloween night."
Eric tried to tease her with the knowledge that no trick or treating brings no candy...but that didn't phase her. So this was a serious concern of hers and it was keeping her awake. Now we have the serious talk with her. I pointed out to her that we never let her and sister go out alone, that we are always standing at the edge of the sidewalk watching and waiting for her and her sister to come back down the walk. And, if Bradley is willing to walk a bit, one of us is standing with him, with both of them, at the door. We could get closer but not without letting the world see what overprotective hovering parents we truly are and really, honestly, try not to be. And then I mentioned that I thought it wasn't a great night for it because there ARE so many parents out and about, there are so many people out and about and everyone is watching each other and watching the kids. We are more vigilant because we worry that someone will take the opportunity to do something terrible.
It used to be I was worried someone was going to jump out and scare me on a harmless prank...and then I had kids, and now I look to make sure someone doesn't scare them too bad...or worse...reach out and grab them. But these are things I never tell my kids...I don't plant these things in their minds because it keeps Sydney awake at night. But TV likes to make sure they think of this stuff, and so do books. So as soon as you think you are being a good parent by limiting the TV, they come out just as freaked out because they read that book about the thing, and... well you get the idea. So while I am trying to ease the fears of my nine-year-old, I am also trying to muster the patience to teach them both something important.
Cooking. I'm trying to let them into the kitchen with me to cook more. And I know I just told you that they are brilliant, and they are...but sometimes the common sense gene skips a generation... or at least checks out for a few hours at a time. So cooking with them is like taking a walk on the wild side, always. You ask them to stir and they do...hard enough to send it all out of the bowl. Gentle, turns out they barely touch the food in the bowl. Half the time I spend trying to figure out how best to explain to them how to perform a task because they are both so literal and precise...which is great for cooking but difficult to explain in the kitchen.
Still, Madison tackled Meatloaf last night, and Sydney tackled Tamale Pie tonight. Being older, Madison got the more hands on meal that after a few times she can create on her own. She also created mashed potatoes and cooked a vegetable. Sydney sauteed onions and stirred the meat, then she got to put the cornbread together for the top; Mom did most of the heavy lifting here. But as much as it was frustrating at times to search through every brain cell I had to find the right way to explain to them what I needed or how I needed them to perform a task, they were quite good at it. The true lesson was for me actually. It was a lesson in letting go. You see I forget that nine times out of ten a kid will eat whatever she helps make, if it's not perfect to the adult palate it's truly okay because it's okay to their nine and eleven year old taste buds. And so on... So, maybe Madison's meatloaf had way more garlic than anyone wants in their meatloaf, but it still looked, felt, and tasted like meatloaf, albeit a more garlicky rendition. And sure Sydney's cornbread turned out horrible, but through no fault of her own, I think (never buying that brand again!). She followed the directions on the mix and from Mom, but it just didn't turn out well in the end. But here's the funny thing about it all. Last night, Madison had two helpings of meatloaf and tonight, Sydney had two helpings of tamale pie. And looking back, I realize that the spaghetti that Madison made last Thursday, they both had two helpings of that even though it was a little blander than what I would normally go for. So perhaps the picky one is me, not the girls at all - or perhaps they just want to eat their own creations. Perhaps mom's days in the kitchen are numbered??? Wishful thinking aside, maybe a bit premature, but what isn't is me letting go of the need to make sure that everyone loves dinner. After striving so hard to make it taste perfect, I realize that sometimes perfect means different things to different people. When the girls make dinner it's perfect because they got to make it. When I make dinner, it's perfect because Bradley ate some of it and the girls ate all of their meal. To me that's awesome, and if someone walks away without despising her sister, then it's been an even better night.
Right now life continues to be about what I can control not what I cannot. Bradley is not doing super great, but he is doing okay and I control everything that goes in his mouth. I desperately keep track of everything he can and cannot have; every bite he takes has a calorie count and I keep a general tally in my head because tracking every single one was driving me crazy. So here's the tough part, there are only certain ways that he will eat certain foods...so I have to find a way to give the girls reins to make every meal an adventure as they learn to master this world of cooking, while keeping enough the same to keep him eating.
Two nights a week I have to have a safe and viable Plan B for Bradley's meal in a way that neither girl figures out what I'm doing. I also have to learn all I can from these sessions with them and retain it all so that when Bradley is old enough to help me cook I'll be ready. Because this is what I know, no matter how much I struggle with this, I will master this with the girls and with Bradley because all three will know how to take care of themselves out in the world. It doesn't matter if they wear all pink socks and eat super garlic laden food...the point is that they will survive on their own. From Madison to Sydney to Bradley...these birds are going to leave this nest and make their way in the world without me, I believe it so that is what we are working towards. I wouldn't mind the birds hanging out at the nest as much as possible...so I intend to make sure that cooking gets much better with all three of them! ;-)
Awareness, then Acceptance and that will encourage Independence! Day 14 of the Challenge settles into the books! Now to see how my Chargers are doing on Monday Night Football...talk about challenges! ;-)
Sunday, October 13, 2013
Calm After the Storm
Some days it's like living in chaos in this house. Right now we've got all three kids dominating the living room like this: Madison is trying to build a fort and keep it built while Bradley thinks that the blanket making the fort should be on the floor. Sydney has her toy bow and arrow and she's running around telling us that she's being chased by a bear. To help, Bradley is pushing Sydney into the fort/tent, like hands on her butt shoving her in. And every time Sydney tries to leave the tent, Bradley chases her down and drags her back in. So instead of running from the bear, Sydney sits in the tent and is shooting arrows at the "bear" from inside the tent. Seeing this, Bradley is acting out his role of Daryl from "The Walking Dead" and running around gathering arrows. The problems arise when Sydney wants the arrows back. And if you've seen the show you know how Daryl feels about his arrows - Bradley feels the same way. So we negotiated for Bradley to keep one arrow, the girls have fled the field and Bradley has decided to spend some time with his shadow friend. Sitting at his table, Bradley keeps sticking the suction cup end of his arrow against the table and then manages to pull it off again. Pretty nice work for him. Now he's moving around the living room testing every surface to see where he can get this to stick. The carpet doesn't work, nor does dad's leg. Mom's foot is a no go as well.
Turns out it'll stick to the door, and just as he sticks it to the door he thinks it is hilarious to direct Sydney to shoot her arrows at the door.... Then he scurries forward to snag them off the door. Only to push them back on the door himself; laughing so hard he can barely stand up.
In the midst of this Hurricane, Dad and I are splitting our time between watching them and watching football. Not a bad way to spend a Sunday afternoon.
Kind of a relief after a stressed filled week. Dad got called back to work, but not getting paid for it yet. But that was just part of it; worse, Madison got bullied at school. Much worse, Madison's best friend jumped in to bully her with two other girls. Physically, no harm, but the pain in her tears sure hurt us all. Dad went to school the next morning. The Director was late coming in because she was sick, but the Asst. Director and two teachers spent considerable time with him talking it through. When the Director came in, she spent time with Madison and all the girls. She was determined to learn for certain that this was not an ongoing event in Madison's life, she wanted to be certain that it was only a one time deal...it was. The girls involved were not suspended though it was close for them, instead they were given detentions for two days...hopefully, they got the message and this will fill Madison's bully quota for the rest of her life. Wouldn't that be grand?
My girl was amazing folks. She bawled her eyes out at home, maybe even in the bathroom at school where she fled, but mostly...at school...she held it together. She told the girls she didn't like what they were doing, that it wasn't nice, and then she walked away. Grace under pressure, grace in the line of fire. The next morning she went to school though she desperately wanted to hide at home; it didn't help that her parents told her that she had to go, she couldn't hide...she had to fight so the bullies wouldn't win. But guess who answered every call on the first ring? Guess who never took her shoes off all day so that I was ready to head out the door at a moment's notice? Yeah, that was me. And good thing too...Madison was so rattled she left half her books and homework at home and I had to run them over to her. But I didn't mind that so much, I didn't wait to see her in the office, but I felt pretty good knowing that she would be making contact with the office at least once that day. I was happier to learn about an hour later that the issue was being handled immediately and my kiddo had spent over half an hour with her Director and left smiling, an emotional victory - she's not afraid of school.
So the week ended on a better note than it could have. I always worry about my kids, I worry about them out of my sight at school where I can't be with them and protect them, and I really wish I could put them in a bubble to keep them safe and just download all the things they need to know to survive in this harsh world using a USB cord or something, but I haven't learned how to do that yet.
What sticks with me right now is this: Madison was a reflux baby that was labeled a Grade Three (how it was measured at the time) and she was one grade away from surgery...in retrospect, I see now how her ordeal was a trial by fire for Bradley and his reflux issue that would be considered by the hospital that treated Madison a Grade Four. His surgery was something that our daughter was so incredibly close too, and we really had no idea. I don't want Madison being bullied to be a precursor for what Sydney or Bradley will go through as they get older. I don't want Madison bullied anymore, ever! It is frustrating and leaves you feeling powerless as a parent because so often it comes out of nowhere and I know I always believed there would be some warning. But we know that we have to be strong advocates for Bradley, that we will have to fight for him. So we definitely aren't going to slack off with Madison and Sydney, perhaps because we know the kind of issues we might have to fight for him, it makes us better fighters, better advocates for all three kids. Look out world, we are on the watch and intend to get all these kids safely and successfully through Pre-School, Elementary School, Middle School, High School, and see if I don't hit a College Campus if necessary! ;-) Though based on this week, Madison won't need my help in College...might not need me in High School, she is one strong kid!
New week tomorrow, blessed half days and teacher conferences tomorrow. Perfect timing for both. Then we get a week off after that...these kids definitely could use a break! Mom and Dad too! :-) Next Sunday we'll be headed home from San Diego and seeing our favorites! We'll be tired sure, but hopefully, not having to relieve any other stress but what traffic brings! ;-)
Okay "31 for 21: Challenge" followers, have a great Sunday evening! See you tomorrow!
Turns out it'll stick to the door, and just as he sticks it to the door he thinks it is hilarious to direct Sydney to shoot her arrows at the door.... Then he scurries forward to snag them off the door. Only to push them back on the door himself; laughing so hard he can barely stand up.
In the midst of this Hurricane, Dad and I are splitting our time between watching them and watching football. Not a bad way to spend a Sunday afternoon.
Kind of a relief after a stressed filled week. Dad got called back to work, but not getting paid for it yet. But that was just part of it; worse, Madison got bullied at school. Much worse, Madison's best friend jumped in to bully her with two other girls. Physically, no harm, but the pain in her tears sure hurt us all. Dad went to school the next morning. The Director was late coming in because she was sick, but the Asst. Director and two teachers spent considerable time with him talking it through. When the Director came in, she spent time with Madison and all the girls. She was determined to learn for certain that this was not an ongoing event in Madison's life, she wanted to be certain that it was only a one time deal...it was. The girls involved were not suspended though it was close for them, instead they were given detentions for two days...hopefully, they got the message and this will fill Madison's bully quota for the rest of her life. Wouldn't that be grand?
My girl was amazing folks. She bawled her eyes out at home, maybe even in the bathroom at school where she fled, but mostly...at school...she held it together. She told the girls she didn't like what they were doing, that it wasn't nice, and then she walked away. Grace under pressure, grace in the line of fire. The next morning she went to school though she desperately wanted to hide at home; it didn't help that her parents told her that she had to go, she couldn't hide...she had to fight so the bullies wouldn't win. But guess who answered every call on the first ring? Guess who never took her shoes off all day so that I was ready to head out the door at a moment's notice? Yeah, that was me. And good thing too...Madison was so rattled she left half her books and homework at home and I had to run them over to her. But I didn't mind that so much, I didn't wait to see her in the office, but I felt pretty good knowing that she would be making contact with the office at least once that day. I was happier to learn about an hour later that the issue was being handled immediately and my kiddo had spent over half an hour with her Director and left smiling, an emotional victory - she's not afraid of school.
So the week ended on a better note than it could have. I always worry about my kids, I worry about them out of my sight at school where I can't be with them and protect them, and I really wish I could put them in a bubble to keep them safe and just download all the things they need to know to survive in this harsh world using a USB cord or something, but I haven't learned how to do that yet.
What sticks with me right now is this: Madison was a reflux baby that was labeled a Grade Three (how it was measured at the time) and she was one grade away from surgery...in retrospect, I see now how her ordeal was a trial by fire for Bradley and his reflux issue that would be considered by the hospital that treated Madison a Grade Four. His surgery was something that our daughter was so incredibly close too, and we really had no idea. I don't want Madison being bullied to be a precursor for what Sydney or Bradley will go through as they get older. I don't want Madison bullied anymore, ever! It is frustrating and leaves you feeling powerless as a parent because so often it comes out of nowhere and I know I always believed there would be some warning. But we know that we have to be strong advocates for Bradley, that we will have to fight for him. So we definitely aren't going to slack off with Madison and Sydney, perhaps because we know the kind of issues we might have to fight for him, it makes us better fighters, better advocates for all three kids. Look out world, we are on the watch and intend to get all these kids safely and successfully through Pre-School, Elementary School, Middle School, High School, and see if I don't hit a College Campus if necessary! ;-) Though based on this week, Madison won't need my help in College...might not need me in High School, she is one strong kid!
New week tomorrow, blessed half days and teacher conferences tomorrow. Perfect timing for both. Then we get a week off after that...these kids definitely could use a break! Mom and Dad too! :-) Next Sunday we'll be headed home from San Diego and seeing our favorites! We'll be tired sure, but hopefully, not having to relieve any other stress but what traffic brings! ;-)
Okay "31 for 21: Challenge" followers, have a great Sunday evening! See you tomorrow!
Saturday, October 12, 2013
Tougher Challenges
Even though I'm not in the market for another baby, I still go once a year to the OB/Gyn to protect myself. I want to be here for as many tomorrows as possible so I try to pay attention to the details to keep me healthy. Last year, my insurance company sent me two letters, three e-mails, two automated phone calls and one text message encouraging me to get my baseline mammogram done. So I had this image in my head of me standing in front of St. Peter saying, "Why?" And St. Peter looking back at me saying, "Well, we sent you all kinds of messages....." Ah, well.... Yeah okay, I'll get that checked. So after telling the doc how often I was being contacted, we had a good chuckle, then we got it done and all was well, relief!
But along the way, I had to confront one of my new phobias...waiting rooms at baby doctors. The first one I tried, the front desk people made me furious so I refused to go back. Their incompetence chafed me no end. Then the girl who had screwed up my whole appt forcing my return wanted my picture for their files. I looked at her and said, "No." She protested. I told her she had copies of my driver's license and my dependent ID card: "You got enough pictures of me." So she looks offended and then taps at her computer and says she can work it out. I told her good for her, but I wasn't coming back anyway, so I didn't care what she did. Sad part in all this, the doc was really nice.
Oh well, off to doc #2. I chose one in another city. I learned that one of the doc's in town offered to fix the dates on paperwork so a mom's insurance would cover the abortion after a Down syndrome diagnosis. Who knows who or where, but I knew I didn't like the first place I went and figured out of town would just be better for my sanity.
Next town, new doc, new waiting room full of chic, well maintained pregnant women. My first thought was, hmmm, wait till the little bundle gets here! The new mom that came in while I was waiting, well...she confirmed this and I tried not to chuckle. But under it all I felt the pressure of wondering what they would do with a diagnosis, what would this doctor do or say to them, to me? Turns out the staff is one of the nicest groups I get to deal with, so that helps. When Bradley had to go with me, they didn't care that I'd brought my bodyguard. I was anxious, but having to stand on a scale and read those numbers is a great equalizer for me. I am what I am, I am always at work on myself, and I'm okay with that. In that instant, standing there staring at my number, I stopped caring what they might say about my little guy. I am not the only work in progress in my house: I got three big projects underway 24/7. By the time I got to my room, my blood pressure and heart rate were perfect. Bradley being his sweet and adorable self - charmed the knickers off of our British nurse and the doc, he was pretty charmed as well.
I don't know what my doc would tell a mom with a diagnosis...I do know that he has seen a very cute and sweet kid who has a well adjusted mom that has a sense of humor in place and a calm enough outlook on life to get our family through. Oh, and that kid also has Down syndrome. We came, Bradley charmed, and they were all pleased to see us and look forward to our return next year in the hopes that I avoid more complications in my aging body. ;-). Nice group, but once a year is more than enough for me! HaHa.
Should I return, not as a patient but as an advocate? Yes. And I will, because I need them to know that I am here to listen and to answer questions to those getting a diagnosis. They need to know that I am here and willing to help a new parent talk about their baby first and the joy of that, and then talk about the diagnosis. So I will write a letter, I will put my contact information in there, and links to important websites with up to date info about Down syndrome. It's what I can do to help Bradley, babies with a little extra something special, and for the parents who struggle with the news.
So a new Challenge for October to go with the "31 for 21: Challenge" but one that fights for the smallest heroes fighting for each day, each breath, and every heartbeat!
But along the way, I had to confront one of my new phobias...waiting rooms at baby doctors. The first one I tried, the front desk people made me furious so I refused to go back. Their incompetence chafed me no end. Then the girl who had screwed up my whole appt forcing my return wanted my picture for their files. I looked at her and said, "No." She protested. I told her she had copies of my driver's license and my dependent ID card: "You got enough pictures of me." So she looks offended and then taps at her computer and says she can work it out. I told her good for her, but I wasn't coming back anyway, so I didn't care what she did. Sad part in all this, the doc was really nice.
Oh well, off to doc #2. I chose one in another city. I learned that one of the doc's in town offered to fix the dates on paperwork so a mom's insurance would cover the abortion after a Down syndrome diagnosis. Who knows who or where, but I knew I didn't like the first place I went and figured out of town would just be better for my sanity.
Next town, new doc, new waiting room full of chic, well maintained pregnant women. My first thought was, hmmm, wait till the little bundle gets here! The new mom that came in while I was waiting, well...she confirmed this and I tried not to chuckle. But under it all I felt the pressure of wondering what they would do with a diagnosis, what would this doctor do or say to them, to me? Turns out the staff is one of the nicest groups I get to deal with, so that helps. When Bradley had to go with me, they didn't care that I'd brought my bodyguard. I was anxious, but having to stand on a scale and read those numbers is a great equalizer for me. I am what I am, I am always at work on myself, and I'm okay with that. In that instant, standing there staring at my number, I stopped caring what they might say about my little guy. I am not the only work in progress in my house: I got three big projects underway 24/7. By the time I got to my room, my blood pressure and heart rate were perfect. Bradley being his sweet and adorable self - charmed the knickers off of our British nurse and the doc, he was pretty charmed as well.
I don't know what my doc would tell a mom with a diagnosis...I do know that he has seen a very cute and sweet kid who has a well adjusted mom that has a sense of humor in place and a calm enough outlook on life to get our family through. Oh, and that kid also has Down syndrome. We came, Bradley charmed, and they were all pleased to see us and look forward to our return next year in the hopes that I avoid more complications in my aging body. ;-). Nice group, but once a year is more than enough for me! HaHa.
Should I return, not as a patient but as an advocate? Yes. And I will, because I need them to know that I am here to listen and to answer questions to those getting a diagnosis. They need to know that I am here and willing to help a new parent talk about their baby first and the joy of that, and then talk about the diagnosis. So I will write a letter, I will put my contact information in there, and links to important websites with up to date info about Down syndrome. It's what I can do to help Bradley, babies with a little extra something special, and for the parents who struggle with the news.
So a new Challenge for October to go with the "31 for 21: Challenge" but one that fights for the smallest heroes fighting for each day, each breath, and every heartbeat!
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