I keep trying to remain positive. I keep looking for the brighter side of things, I tell myself that if I can keep the positives in focus and see what I want them to lead too; then they will come about someday. But sometimes, I feel like this is a battle that isn't going to end well for us.
So I'm going to list the positives in October, the things that will make this a month we can crawl out of, because I can see right now that walking is not going to be likely.
October:
At some point this month, Molly the wonder dog with NorthStar Dogs will be ready to be inseminated again. Why is this so big? One of the puppies that she gives birth to at the end of the year (or January) will be trained to be Bradley's Service Dog. So this one is pretty big!
I'm blogging daily, and yes this is a positive. ;-) It's important to take the time to reach out and help people to gain a better perspective about our little ones. Bradley will not always be a little guy, it's my job to guide him down the path ahead to help him become an independent, contributing member of society...it's also my job to try to level the playing field to give him as fair a shot as I can. Awareness leads to Acceptance...that's why I do this "31 for 21: Challenge!" :-)
This is Buddy Walk month! Buddy Walk let's us reunite with "Bradley's Buddy Brigade" each year. We get some of our original members to ourselves for a few hours and every year we get Blessed with some new ones that make the time to be a part of the day. Love wraps around us tight and bolsters for whatever the next year will bring. We can't wait...this year has provided more challenges and our coffers are running a little low.
The girls started Chorus yesterday. This is big too. Should we have spent the forty bucks? Yes, it's important. It gives them something to look forward to each week, it gives them an anchor in an otherwise rough sea. And I don't care how well you do or do not sing, singing makes you feel better. As their mom, hearing them sing makes my own heart sing. They feel better, I feel better - it's a win win! At the end of practice I get to hug them both and tell them: "I love to hear you sing!" It comes from my heart and it fills theirs right up to overflow - it feels good. First time going and I have to say that being the super wimp that I am...yeah, I felt that burning behind my eyes. So yeah, this will be a good thing!
The girls will continue in band because the school has found a Clarinet for Sydney and a Trumpet for Madison. They are now learning to read music, play music, and somewhere in there the skills that music is a bridge too - those are all forming and building and guiding. And I'm not going to lie, they aren't putting two good sounding notes together yet which just adds to my giggles as I think of our rude neighbors taking part in this wonderful opportunity for my children. :-) HaHa.... seriously though, their practice time happens so early I'm not sure that most are even home from work yet. Sure is funny to see the girls put tissue in their ears to block each other out though!
Madison is teaching Bradley how to blow into the trumpet and make sound...and he is making sound. We think that 3 is too young to take up the trumpet...but we are totally open for 4. We think his dexterity will be ready by then, you should have seen his incredible pincer grasp work this afternoon in OT!
"The Walking Dead" starts up again this month! Hurray! It's not real, but they sure are having a worse life than we are so it's got a comfort level...course they have no more Congress...but that Governor was rough and I kind of think the snake will be slinking back in this season. It's not much, but it's something to look forward to each week.
And finally, the Flu shots are available...they suck to get but they are the best and only chance to fight the flu with Bradley. We need a winter where he isn't in the hospital, if we get so lucky at the end of the year, I will feel like we have won a huge battle. So yeah, the flu shot makes the list...hey, I warned you that it I was hard pressed to find the positives right now.
That's about it. There's a lot to focus on this month and for the most part not a lot of good things. It takes a lot of effort to isolate out the good things to really see the positive in them to give me something to hold onto. I'm strongly grounded in reality, don't mistake my attempt to take the positive approach. But I also have Faith and I have to believe that things will work out as they are meant to be; why, because I am also a mom and getting this family through the tough times now and the ones that are bearing down on us, that's my job. And the seas ahead are rougher than I have ever seen, I'm tying the kids to me with strength of will so we can all get through it.
Friday, October 4, 2013
Thursday, October 3, 2013
Juxtaposition
Juxtaposition - the fact of two things being seen or placed close together with contrasting effect.
Juxtaposition, I love the word, it sort of sings off my tongue and rattles around inside my head...yeah I know, a lot of space in there. It's been repeating itself to me lately and I didn't realize it, I didn't realize I was using it to align my thoughts. I didn't realize that I was living it.
I was thinking of the blog challenge, I was thinking of topics and my list for ideas got a little out of hand which I am prone to do and I began to feel a little pressure. Then the government shut down and Eric walked in the door furloughed and I felt a whole other world of pressure start...a powder keg of pressure waiting for the ultimate explosion. Pressure.
We are no stranger to pressure, we are no stranger to juxtaposition...try saying it...fun right? ;-) Bradley's very existence is built on this idea: two ideas with contrasting effect. Am I proud of that? No. But do I recognize it for what it is? I do.
From the start it has been this for him. There is an instant in your life when you look back and you can kind of see that moment when the life you knew, became the life you have. That moment when you can see now, where the cart went flying off the track and veered into uncharted territory. And yeah, sure...a kind person can holler at you "Save yourself, take the wheel, take back control!" But if they were in the cart with you they would notice what you've come to realize...um, there's not a wheel to take, and the brake lever just broke off in my hand! Looking back to see this moment, I could be wrong about this...but it might have been the Melanoma issue when I was pregnant with Bradley. Not the cancerous part of it, more like the placement, in the center of my back which would lead to the placement problem of the epidural during labor with Bradley...which leads to the juxtaposition... painful labor on one half of my body, no feeling on the other. How's that for almost, sort of, Natural childbirth? Yeah, not even close...those moms...truly epic on the heroic scale.
But that feeling of no control, that feeling of the cart screaming down the track without brake or wheel...that feeling never stopped for us. We have had a couple of straightaways and minor hills to slow us from ending in a fiery crash...but there is no guide on this journey. If I had a worse memory problem than what I currently have we could call it a day and you could call me "Sam" and Eric could be my voice of reason, "Al"...and you'd have watched us on TV in "Quantum Leap" but we're here instead, muddling through.
So here's the news: Bradley has an extra chromosome...
The Bad news: he has digestive issues. The Good news: He's learning to eat.
The bad: He doesn't learn as fast. The good: He has his own timeline and it's ok.
The bad: He's non-verbal. The good: His voice is in his hands, and he has a lot to say. Oh and the words? They're slowly coming...it's still his timeline.
The bad: He's been really sick, I mean like super sick. The good: His Will, our Will, the Will of his Dr.s - together, we keep fighting back. No one gives up, no one turns away from the challenges, together we always work out the best way to bring him back to healthy.
So Bradley has Down syndrome. We held this tiny baby boy who was so perfect it hurt your heart to look at him, with his deep soul touching blue eyes that quietly asked for your love and his perfect little expression that made spotting the physical aspects of Down syndrome like a game of peek-a-boo...he had all these things, and he had the extra chromosome. Surely if they could coincide together in one little baby...they could coincide in our life. And, they do. Some could argue that we made the best of it because he as here, we couldn't send him back...but everyone has choices. No one suggested that we do anything but take him home and love him, others were not so lucky - so supported... Contrast. No one came out and said they thought he would be a burden; in fact, we were told to wait and see, that he would "amaze us", and he does. Contrast. No one said it would be easy, which is good because it is not easy. But then raising the girls is not easy. But anything worth doing should be work, you should have to work so that in the end the result is something to be proud of. To paraphrase Art Miller: "I never said it would be easy, I said it would be worth it."
Today, Bradley is fighting very hard to stay healthy and awake at night (seriously: 2 am to 5 am stints, what is up with that?) and I know that he is doing that to take the pressure off of us as we try to deal with the pressure of a government shutdown on a one income family. My job is to be preventive in the bad health area, I don't get paid in money...but in each hour, each day that Bradley is healthy. These days I wish I had a full time job to make up the huge whole in our budget, but I also know that while Bradley is too fragile for school, he is way too fragile to attempt daycare. So we're going to tighten the seat belts in this cart, duck our heads and hold on for dear life and pray that there is a straightaway coming soon to keep us on the tracks. Maybe we can get a little Blessed with a hill to slow this thing down and help right the ship. I wanted to point out the contrast in this last idea, but better leave it vague...Bradley likes to challenge me.
Maybe the dictionary should just put a picture of us next to the definition of Juxtaposition, we seem to live it. And well, I do love to say it, that should have some weight don't you think?
Wednesday, October 2, 2013
Day Two
When school started this year, the kids and I traveled past the Middle School to get to the Charter schools where the girls go. As always, there is that moment of passing the fields where we look for those darn geese. You might remember the geese? The Canadian Geese that stop off in the fields for several weeks waiting to travel south in the Winter and north in the Spring. Other than the fact that their mother gets excited by the geese, I am not so sure why the girls get excited to see the geese, but every time they do. Why do I? I am not certain of that either, I just know that they pull at me, touching something deep inside of me that I connect with whenever I see them.
This year the geese brought friends, a lot of friends. The group has grown considerably into the forties or fifties in fact, so definitely a good spring and summer for our feathered friends. We watched them for weeks and each day they moved to another part of the field. On a Friday morning, they had pushed themselves almost to the fence and so very close to the road. I told the girls to notice this because it meant they had ate almost everything available on the field and had to finally approach the roadway. There is a large fence around the field so the probability of the geese getting hurt was not possible, but the noise of people and traffic was surely a nuisance for them. The girls took note, and they enjoyed the chance to see the geese so close. As they disappeared behind us I told the girls, "Just watch, by Monday they will have moved on and then maybe in a week or two the other group will come...our little group."
When we moved up here and saw the geese the first time, we marveled at the large group, but a few weeks later, when the group had moved on the small group of five had moved in. We connected to them because there were five like us. New in the area, we were pretty isolated, and with Bradley's health, we are still pretty isolated today. But we felt something special in this little group that would land with an ailing member and nurse it back to health, finally moving on together. We had an ailing member and we rallied around him to nurse him back to health too - someday, we will move on together as well.
Years pass quickly and each spring and fall we are reminded to stop and think about how a family is supposed to take care of each other whenever we see our geese. For just as surely as the large group moved on; yesterday morning, the little group landed. They are still little, but there are eight of them now. Each one looks big and beautiful and so healthy. Their arrival a mere week after the larger group, their stay, only a day before they took to the winds and disappeared again. They have moved on, they healed together, grew together and now they have moved on together.
We may not be completely healed, any of us, but I think we are moving forward if not moving on. Bradley's health is a constant question in our lives, but we feel like he is getting stronger. We try not to think too much that he is moving out of his problems because that leads to a lull in our wariness and any crash back into wariness is a painful crash. We try to be cautiously optimistic about just taking each day as it comes, taking each moment of bad health with concentration and follow through to keep it from becoming something larger.
My hope is that someday our group will be healthy and strong and we will all move on together, maybe we won't be joining in with the big group again, maybe we'll always be our own little family, but even the geese grew a little - so someday we will too. I'm trying to teach the kids that if we rely on each other and take care of each other the size of our group will not matter. Together we are going to get stronger and we are going to move on. That being said, this little group is always willing to add someone to our "V" that needs us as much as we need them. Join our flock, we might not be flying the furthest or the the highest "today" but we will be and wouldn't you hate to look up and see us go by and not be a part of that? Knowing that you could have been.
This year the geese brought friends, a lot of friends. The group has grown considerably into the forties or fifties in fact, so definitely a good spring and summer for our feathered friends. We watched them for weeks and each day they moved to another part of the field. On a Friday morning, they had pushed themselves almost to the fence and so very close to the road. I told the girls to notice this because it meant they had ate almost everything available on the field and had to finally approach the roadway. There is a large fence around the field so the probability of the geese getting hurt was not possible, but the noise of people and traffic was surely a nuisance for them. The girls took note, and they enjoyed the chance to see the geese so close. As they disappeared behind us I told the girls, "Just watch, by Monday they will have moved on and then maybe in a week or two the other group will come...our little group."
When we moved up here and saw the geese the first time, we marveled at the large group, but a few weeks later, when the group had moved on the small group of five had moved in. We connected to them because there were five like us. New in the area, we were pretty isolated, and with Bradley's health, we are still pretty isolated today. But we felt something special in this little group that would land with an ailing member and nurse it back to health, finally moving on together. We had an ailing member and we rallied around him to nurse him back to health too - someday, we will move on together as well.
Years pass quickly and each spring and fall we are reminded to stop and think about how a family is supposed to take care of each other whenever we see our geese. For just as surely as the large group moved on; yesterday morning, the little group landed. They are still little, but there are eight of them now. Each one looks big and beautiful and so healthy. Their arrival a mere week after the larger group, their stay, only a day before they took to the winds and disappeared again. They have moved on, they healed together, grew together and now they have moved on together.
We may not be completely healed, any of us, but I think we are moving forward if not moving on. Bradley's health is a constant question in our lives, but we feel like he is getting stronger. We try not to think too much that he is moving out of his problems because that leads to a lull in our wariness and any crash back into wariness is a painful crash. We try to be cautiously optimistic about just taking each day as it comes, taking each moment of bad health with concentration and follow through to keep it from becoming something larger.
My hope is that someday our group will be healthy and strong and we will all move on together, maybe we won't be joining in with the big group again, maybe we'll always be our own little family, but even the geese grew a little - so someday we will too. I'm trying to teach the kids that if we rely on each other and take care of each other the size of our group will not matter. Together we are going to get stronger and we are going to move on. That being said, this little group is always willing to add someone to our "V" that needs us as much as we need them. Join our flock, we might not be flying the furthest or the the highest "today" but we will be and wouldn't you hate to look up and see us go by and not be a part of that? Knowing that you could have been.
Tuesday, October 1, 2013
October 1: To Begin Again
I'm doing the 31 for 21 Challenge again this year. I think it's important. I think that there is so much out there intended to help and to hinder at the same time that we are being inundated with uncertainty. We started the last year with the news about the pre-natal test "MaterniT-21" and the ramifications that at 12 weeks a mom can be 99% certain that her child has Down syndrome, "Trisomy 21." Considering the numbers can be as high as 9 out of 10 diagnosed babies are aborted this seems like a death warrant for Down syndrome. And it's not because there is a 'cure' or a prevention, it's just an option. I followed the studies for months, struggled with them really. Would I have taken the test, would it have made a difference? Sure, agonizing debate...mind numbing fear...hours of research...to lead to the only option I would have been comfortable with...a beautiful baby boy 22 weeks later. But that would be a good thing to have those 22 weeks, because I would have been ashamed at myself for thinking down that track, no matter how quickly I jumped off. I know me, but I also have some reference to this.
As most of you know, Bradley was a huge surprise, as in so not on my radar that I was using a diet pill to help lose the rest of my baby weight from Sydney...and that kid was almost five! Geesh! Anyway, they hadn't been working so I had stopped them about ten days before I discovered I was pregnant. Do I think that the diet pills contributed an extra chromosome? Don't know, that kind of thinking is counterproductive to me - it would just drive me nuts. It's something future parent planners might want to keep in mind I guess...but let's be real, how many pregnancies are planned out? How many mommies weren't eating their fiber cereal and taking pre-natal vitamins to prep for the BIG Day??? Regardless, I was trying to tell the OB Nurse that was doing my intake that I was concerned and I said it like this: "I'm concerned about the baby because of these diet pills because this was so not planned!"
She translated that to us wanting to end the pregnancy. Huh? And I had a moment of sheer disbelief as I said, "No, the baby is here, it's coming now...I said I was concerned by what to expect because of the diet pills, not how do I ditch this?" In that moment I felt the weight of all my 35 years, with delivery coming at 36 years. And when I thought I had worked through that, and I felt almost spry...well, no, never spry...at least like earlier 30's...our other doctor friend chuckled as he told me my chart listed "advanced gravitas" or some such explanation in Latin to define my pregnancy. After that I went looking for a cane. Good grief!
So I am glad I skipped that wretched test. But even now I wonder where we might be headed. Will Bradley's generation be the very last there is to be of Down syndrome? Will these future babies be terminated based on a test and doctors that don't always know what to say, or can say the right thing but in the least approachable way possible? Let's be honest, for every person that falls in love with my son, there will be ten more ready to tear him down and attack me for raising him and not hiding him away from "decent" society. I'm working now on my even thicker skin, but let me just say...I never want to step foot in their version of "decent" society. My boy is only three and a half years old, but as I delve into the early education of myself to prepare for Inclusion for him in school - I find myself daunted. I see already where there will be pitfalls and fights - and that's before I ever get to meet one teacher to know if this is a battle to fight without an ally. I keep researching this information, reading other parents' issues and problems...but sometimes I step back and just go play with Bradley instead. I guess in the grand scheme of things blogging 31 days in a row is a cake walk compared to helping Bradley become included in school and life. (I say this now, but check back at Day 15 and see how optimistic I remain!) ;-)
So we Begin Again. We do this a lot, we begin again and again. Past mistakes are noted and corrected and a new way to do our plan is attacked with gusto. If we get it right, repeat, repeat and repeat until the plan has to change or is forced to change and we begin again. Exhausting? Yeah, it can be quite. Days run into each other and nights grow longer than they should be. You forget to pick up the phone to connect with your family and friends because the process of repetition lulls you into a sense that as much time has not passed as really has. And then you look up and see a calendar and you realize how long it has been and you hesitate to call now because you haven't been in touch like you should. Perhaps it is much easier to blog. :-)
31 for 21 Challenge...perhaps this constant awareness of the movement of days on the calendar will be most beneficial to me and help me reconnect with those I miss and love. Perhaps! Let's just hope that forgiveness is in the air this month as well! ;-)
See you tomorrow, have a great day!
As most of you know, Bradley was a huge surprise, as in so not on my radar that I was using a diet pill to help lose the rest of my baby weight from Sydney...and that kid was almost five! Geesh! Anyway, they hadn't been working so I had stopped them about ten days before I discovered I was pregnant. Do I think that the diet pills contributed an extra chromosome? Don't know, that kind of thinking is counterproductive to me - it would just drive me nuts. It's something future parent planners might want to keep in mind I guess...but let's be real, how many pregnancies are planned out? How many mommies weren't eating their fiber cereal and taking pre-natal vitamins to prep for the BIG Day??? Regardless, I was trying to tell the OB Nurse that was doing my intake that I was concerned and I said it like this: "I'm concerned about the baby because of these diet pills because this was so not planned!"
She translated that to us wanting to end the pregnancy. Huh? And I had a moment of sheer disbelief as I said, "No, the baby is here, it's coming now...I said I was concerned by what to expect because of the diet pills, not how do I ditch this?" In that moment I felt the weight of all my 35 years, with delivery coming at 36 years. And when I thought I had worked through that, and I felt almost spry...well, no, never spry...at least like earlier 30's...our other doctor friend chuckled as he told me my chart listed "advanced gravitas" or some such explanation in Latin to define my pregnancy. After that I went looking for a cane. Good grief!
So I am glad I skipped that wretched test. But even now I wonder where we might be headed. Will Bradley's generation be the very last there is to be of Down syndrome? Will these future babies be terminated based on a test and doctors that don't always know what to say, or can say the right thing but in the least approachable way possible? Let's be honest, for every person that falls in love with my son, there will be ten more ready to tear him down and attack me for raising him and not hiding him away from "decent" society. I'm working now on my even thicker skin, but let me just say...I never want to step foot in their version of "decent" society. My boy is only three and a half years old, but as I delve into the early education of myself to prepare for Inclusion for him in school - I find myself daunted. I see already where there will be pitfalls and fights - and that's before I ever get to meet one teacher to know if this is a battle to fight without an ally. I keep researching this information, reading other parents' issues and problems...but sometimes I step back and just go play with Bradley instead. I guess in the grand scheme of things blogging 31 days in a row is a cake walk compared to helping Bradley become included in school and life. (I say this now, but check back at Day 15 and see how optimistic I remain!) ;-)
So we Begin Again. We do this a lot, we begin again and again. Past mistakes are noted and corrected and a new way to do our plan is attacked with gusto. If we get it right, repeat, repeat and repeat until the plan has to change or is forced to change and we begin again. Exhausting? Yeah, it can be quite. Days run into each other and nights grow longer than they should be. You forget to pick up the phone to connect with your family and friends because the process of repetition lulls you into a sense that as much time has not passed as really has. And then you look up and see a calendar and you realize how long it has been and you hesitate to call now because you haven't been in touch like you should. Perhaps it is much easier to blog. :-)
31 for 21 Challenge...perhaps this constant awareness of the movement of days on the calendar will be most beneficial to me and help me reconnect with those I miss and love. Perhaps! Let's just hope that forgiveness is in the air this month as well! ;-)
See you tomorrow, have a great day!
Sunday, September 1, 2013
It's Here
In every kids life there is that moment, that space of time that will imprint upon their psyche the realization that Mom and Dad may not always be here...not even in the next room or next state realm of here...but here on the planet anywhere type of here. For some kids this will create a renewed sense of love and companionship...for others their heads will temporarily spin around out of control before settling back in place and going about their business; while effectively, leaving mom and dad to correct their own head posture and try to deal with the emotions that these encounters inevitably dredge up.
Has Sydney hit this moment? I don't know, Sydney is an enigma of emotion. She has them..they lie dormant for the longest time only to rear in the most bizarre and unexpected times and places...I mean I could ask her; however, that could create a maelstrom from her that she nor I am prepared to deal with. On this topic I believe I would like to err the same way that I do about the topic of sex...let her come to me with it and once she answers my "Well, what do you think that means?" question...then we can have some dialogue. Right now, we're just dealing with the "What if Bradley dies?" question? That one is loaded enough, so we'll keep that question in the closet for now and return to it as necessary.
So that leaves us with Madison. Eric's parents have now each successfully survived heart attacks. One had to have open heart surgery, the other a stent was all that was needed...to say we have been lucky is putting the mildest of spins on things. Confronted with the emotions of the frightening close calls by her grandparents, Madison has walked that train track back down the tunnel that leads to the light at the end...you know, the light attached to THAT train. If these things can befall her grandparents, then it stands to reason that these things can happen to mom and dad...and that means that mom could die. It's a convoluted track friends, no one said that it makes sense coming down the line with an eleven year old; sometimes, you just have to tag along for the ride to see where we go.
We went around the bend...I think maybe twice. The good news, we both survived. But then I am jumping ahead quite a bit here. So we back up... About a week ago, I went in to tuck Madison in for the night. This is how it goes with her...one of us tucks her in then leaves the room and as soon as we clear her doorway on the way out, she calls us back in...it's a strange dance we do. Anyway, she called me back in and told me she worried about bonding with the cat. Hmm...as I prepare to help her with suggestions, she immediately says: "Mom will we bond when I get older because I'm afraid we won't." Ah...okay, well I can drive a stick, let me switch gears... I barely get to tell her that sometimes moms and daughters have a hard time through the teen years but usually find their way back to each other later. I told her that we would do the same... Um, that might have processed before she launched into: "Mom I don't want you to die!" Ah. Me being me, I almost said "Well, I don't want to die either." But she followed up her statement by throwing herself into my arms and bawling her eyes out. Oh, I see, we're here. We're at the moment in her life and because I had this same reaction and fear envelope me when I was a kid...I know this moment and I am a little afraid of this moment as I have not reconciled myself to this idea that my parents will die someday and that I will die someday...and well, everyone I know. Good grief this is spiraling downhill quite quickly now.
So while she cries, my mind is spinning...what to say, what to say? While half my brain is playing with that the other half is thinking about stuff like this: this kid hugs me three or four times a day, when did she get this solid? She stands beside me and she's at my shoulder, when did she get so big? When was the last time she let me just wrap her up in my arms and hold her to me? And why does there have to be so many tears when I get too? When will she let me hold her again?
And my other half is working on stuff like: What can I say to her that will make her stop crying, but isn't a lie?
I didn't lie, I told her the truth, yep...someday mom will kick the bucket. But I also told her that it won't be until she will be okay without me; even though the truth is, she won't be ready for it to happen and I won't be ready for it to happen. I told her I'd always be with her; that I'd be whispering stuff in her head all the time - like eat that donut for me cause I can't. And, the hottie in the corner is looking at you, smile back - no wait, get out of here, no wait... uh...who's hungry? You know, the important stuff. Luckily, she laughed because it is not very often that her tears can outlast my humor. Not sure how much longer that will be the reality, she's growing up really fast. In this instance, she is me to the core - her fears about the inevitability of death were mine as well. And she's incredibly smart, but she's one of those all around smart kids so that means she has to study and learn stuff...that's me too. Not a lot came easy for me. I doubted my abilities and so that doubt hampered me and made me have to work harder. Madison pressures herself because her sister is pretty stinkin' smart naturally - it's cause for some jealousy. We're used to this though, it's been like this for a while. In our house, we have to preach a lot of patience and encourage the joy of each person's gifts no matter what subject or what talent. We are constantly pointing out that one area of ease for one person is not another's and that's perfectly all right and frankly, part of what makes the journey so amazing.
I left Madison's room that night after she was asleep, I sat beside her until she was and then headed for my own. A feeling of melancholy wrapped around me which I believe is inevitable when one has to think about one's mortality. The idea of not being here is so depressing that I work very hard to not think about that option. But I felt that I had reached my daughter and left her better off than how I had found her. I thought perhaps we had found a place of happy camaraderie that would last through the weekend...boy was I ever wrong! The next day I swear her head spun around twice and I couldn't figure out whether to hug her, ground her or call a priest for an exorcism. What happened to that kid from last night? How do I get her back?
Has Sydney hit this moment? I don't know, Sydney is an enigma of emotion. She has them..they lie dormant for the longest time only to rear in the most bizarre and unexpected times and places...I mean I could ask her; however, that could create a maelstrom from her that she nor I am prepared to deal with. On this topic I believe I would like to err the same way that I do about the topic of sex...let her come to me with it and once she answers my "Well, what do you think that means?" question...then we can have some dialogue. Right now, we're just dealing with the "What if Bradley dies?" question? That one is loaded enough, so we'll keep that question in the closet for now and return to it as necessary.
So that leaves us with Madison. Eric's parents have now each successfully survived heart attacks. One had to have open heart surgery, the other a stent was all that was needed...to say we have been lucky is putting the mildest of spins on things. Confronted with the emotions of the frightening close calls by her grandparents, Madison has walked that train track back down the tunnel that leads to the light at the end...you know, the light attached to THAT train. If these things can befall her grandparents, then it stands to reason that these things can happen to mom and dad...and that means that mom could die. It's a convoluted track friends, no one said that it makes sense coming down the line with an eleven year old; sometimes, you just have to tag along for the ride to see where we go.
We went around the bend...I think maybe twice. The good news, we both survived. But then I am jumping ahead quite a bit here. So we back up... About a week ago, I went in to tuck Madison in for the night. This is how it goes with her...one of us tucks her in then leaves the room and as soon as we clear her doorway on the way out, she calls us back in...it's a strange dance we do. Anyway, she called me back in and told me she worried about bonding with the cat. Hmm...as I prepare to help her with suggestions, she immediately says: "Mom will we bond when I get older because I'm afraid we won't." Ah...okay, well I can drive a stick, let me switch gears... I barely get to tell her that sometimes moms and daughters have a hard time through the teen years but usually find their way back to each other later. I told her that we would do the same... Um, that might have processed before she launched into: "Mom I don't want you to die!" Ah. Me being me, I almost said "Well, I don't want to die either." But she followed up her statement by throwing herself into my arms and bawling her eyes out. Oh, I see, we're here. We're at the moment in her life and because I had this same reaction and fear envelope me when I was a kid...I know this moment and I am a little afraid of this moment as I have not reconciled myself to this idea that my parents will die someday and that I will die someday...and well, everyone I know. Good grief this is spiraling downhill quite quickly now.
So while she cries, my mind is spinning...what to say, what to say? While half my brain is playing with that the other half is thinking about stuff like this: this kid hugs me three or four times a day, when did she get this solid? She stands beside me and she's at my shoulder, when did she get so big? When was the last time she let me just wrap her up in my arms and hold her to me? And why does there have to be so many tears when I get too? When will she let me hold her again?
And my other half is working on stuff like: What can I say to her that will make her stop crying, but isn't a lie?
I didn't lie, I told her the truth, yep...someday mom will kick the bucket. But I also told her that it won't be until she will be okay without me; even though the truth is, she won't be ready for it to happen and I won't be ready for it to happen. I told her I'd always be with her; that I'd be whispering stuff in her head all the time - like eat that donut for me cause I can't. And, the hottie in the corner is looking at you, smile back - no wait, get out of here, no wait... uh...who's hungry? You know, the important stuff. Luckily, she laughed because it is not very often that her tears can outlast my humor. Not sure how much longer that will be the reality, she's growing up really fast. In this instance, she is me to the core - her fears about the inevitability of death were mine as well. And she's incredibly smart, but she's one of those all around smart kids so that means she has to study and learn stuff...that's me too. Not a lot came easy for me. I doubted my abilities and so that doubt hampered me and made me have to work harder. Madison pressures herself because her sister is pretty stinkin' smart naturally - it's cause for some jealousy. We're used to this though, it's been like this for a while. In our house, we have to preach a lot of patience and encourage the joy of each person's gifts no matter what subject or what talent. We are constantly pointing out that one area of ease for one person is not another's and that's perfectly all right and frankly, part of what makes the journey so amazing.
I left Madison's room that night after she was asleep, I sat beside her until she was and then headed for my own. A feeling of melancholy wrapped around me which I believe is inevitable when one has to think about one's mortality. The idea of not being here is so depressing that I work very hard to not think about that option. But I felt that I had reached my daughter and left her better off than how I had found her. I thought perhaps we had found a place of happy camaraderie that would last through the weekend...boy was I ever wrong! The next day I swear her head spun around twice and I couldn't figure out whether to hug her, ground her or call a priest for an exorcism. What happened to that kid from last night? How do I get her back?
Somehow we will weather these pre-teen storms of emotion from
here...but it sure makes it rough going to get through them, and hope to come through unscathed on the other side. The mere idea might be just an idea and not a reality at all. I mean, our scars are what help mold us into who we are supposed to be after all.
Friday, August 16, 2013
Playing with Bradley
It's interesting the way life hands you things...or perhaps I should just say that it's interesting the way Bradley hands us things. We've always been slightly amazed by him, often bemused. We would laugh because every hospital stay would elicit a new skill from him. The first time he spent the night in a hospital he came out holding the bottle on his own. He never ceases to amaze us with these kinds of tricks. Like he means to temper our concern and worry with our great pride and utter joy at his incredible feats. He's good like that.
He had the seizure, and then the next few weeks he seemed to throw out more whispered words and he started to repeat counting: one, two, four, five. He didn't like three, nobody likes three. Sydney didn't like it when she was little either. ;-) Have I mentioned yet how very alike they are?
We moved him to a Toddler Bed last week, we haven't slept in a week! ;-)! Haha. After the first couple of nights, he is staying in bed more hours than he's out of it during the night. Every night he yells to us at 3 am in case we thought he'd left the house or something. Rock him back to sleep and not another peep til after six when he fusses and we find him sleeping on the floor, or sitting in his rocking chair. This morning, when I got to his bedroom door he was in the rocker holding a book. He looked so cute I stood yawning and watching for a minute. Then he leans forward slightly, lets go with a mighty wind; impressive in one so young. So it's pretty early so my five year old side quietly giggles. In the meantime, Bradley leans forward again and here comes the cat, beleaguered and a little flat; out from underneath him. She was sleeping in the rocker and he climbed up and sat himself down using her as a pillow. After gassing her, she bailed for higher ground and cleaner air. As for me, yeah I announced my presence by laughing out loud!
After speech lessons, he decided to ham it up for the camera: here are three of my favorites...
His sense of comedic timing is not his only development amazing us in the past couple of days. As we played last night, Bradley told Daddy he wanted "blocks" but then he told him the colors he wanted. He stacked and then he pushed them down, all the while signing: block, again, blue, red, ready, or, careful... And with his voice he counted 1-6 repeating us and adding three which comes out as an adorable "free" and four that comes out as a lovely "pour". But he had more to say, trying to copy words like: steady and careful. When we were reading his bedtime book, my guy signed the animals he knew even copying the sounds of a pig, an elephant, and a frog. He loves to make sounds like an elephant, but my favorite was the frog.
Did I cry at the sound of my son's voice? Yes. Bradley's sweet voice surrounded me with its warmth, like magic wrapping around me. I was overwhelmed by how much joy I felt, how proud I was of him, how happy I was for him. After I pulled myself together and stopped being a wimp - our time with his book was incredible. We just had so much fun with his book because Bradley was having so much fun giving all the signs he knew and trying to copy every new sign I showed him. So much fun!
Our little boy is growing up, we knew he would. We know he's going to catch up on his own time. It just amazes us when he decides to accelerate his own timeline and pack so much learning into small, powerful bursts!
He had the seizure, and then the next few weeks he seemed to throw out more whispered words and he started to repeat counting: one, two, four, five. He didn't like three, nobody likes three. Sydney didn't like it when she was little either. ;-) Have I mentioned yet how very alike they are?
We moved him to a Toddler Bed last week, we haven't slept in a week! ;-)! Haha. After the first couple of nights, he is staying in bed more hours than he's out of it during the night. Every night he yells to us at 3 am in case we thought he'd left the house or something. Rock him back to sleep and not another peep til after six when he fusses and we find him sleeping on the floor, or sitting in his rocking chair. This morning, when I got to his bedroom door he was in the rocker holding a book. He looked so cute I stood yawning and watching for a minute. Then he leans forward slightly, lets go with a mighty wind; impressive in one so young. So it's pretty early so my five year old side quietly giggles. In the meantime, Bradley leans forward again and here comes the cat, beleaguered and a little flat; out from underneath him. She was sleeping in the rocker and he climbed up and sat himself down using her as a pillow. After gassing her, she bailed for higher ground and cleaner air. As for me, yeah I announced my presence by laughing out loud!
After speech lessons, he decided to ham it up for the camera: here are three of my favorites...
His sense of comedic timing is not his only development amazing us in the past couple of days. As we played last night, Bradley told Daddy he wanted "blocks" but then he told him the colors he wanted. He stacked and then he pushed them down, all the while signing: block, again, blue, red, ready, or, careful... And with his voice he counted 1-6 repeating us and adding three which comes out as an adorable "free" and four that comes out as a lovely "pour". But he had more to say, trying to copy words like: steady and careful. When we were reading his bedtime book, my guy signed the animals he knew even copying the sounds of a pig, an elephant, and a frog. He loves to make sounds like an elephant, but my favorite was the frog.
Did I cry at the sound of my son's voice? Yes. Bradley's sweet voice surrounded me with its warmth, like magic wrapping around me. I was overwhelmed by how much joy I felt, how proud I was of him, how happy I was for him. After I pulled myself together and stopped being a wimp - our time with his book was incredible. We just had so much fun with his book because Bradley was having so much fun giving all the signs he knew and trying to copy every new sign I showed him. So much fun!
Our little boy is growing up, we knew he would. We know he's going to catch up on his own time. It just amazes us when he decides to accelerate his own timeline and pack so much learning into small, powerful bursts!
Thursday, August 15, 2013
EEG, MRI, Oh My!
A month ago the girls sat waiting with me while Bradley was with doctors and nurses. They were a little impatient but they were scared and quick to absorb themselves in anything but reality. I was the anxious one; I was the desperate one. I was the one drowing in a new reality. A month ago, Bradley had his first seizure. Four minutes, might as well have been four hours... Two minutes of not breathing, turning blue... might as well have been two hundred years. I rode with him to the hospital, in front of the gurney where he could not see me and I could not see him. I asked for Oxygen levels, skin coloring...was he sleeping or awake? I gave all the information I thought they might need - clearly, calmly... Precisely. The EMT kept asking me if I was OK, I kept answering yes: always saying yes in fear that something was terribly wrong with my son and if I didn't appear calm he wouldn't tell me the truth. Perhaps I was too calm, perhaps he thought I didn't care... perhaps until he asked for and received the medical history...perhaps only then could he understand. There is too much to say to be frantic and panicky. Too much at stake to make a mistake in information, always it's imperative that they get all they need to know about Bradley to make sure no mistakes happen on their end because I forgot to tell them something.
One seizure that rocked our world, our family. One seizure that led to a CT scan, no fun! An EEG that he was awake for...more no FUN! And then a push by our very good Pediatrician to get him into the Neurologist to get the EEG read, a sedated MRI and finally the Neurosurgeon appointment to have that MRI read. Most of it has happened in a month...the MRI happened last Monday, the 12th of August and was a month to the day from the seizure. They didn't give him a little gas to dilate his veins to get the IV in and make the procedure less difficult for Bradley and his parents. Nope...they were old school... Mom and Dad got the joy of holding him down with two nurses. Bradley fought hard, really hard. He blew the first IV try...the second one took...but then his fear and pain as the medicine burned its way in caused him to yank out the second IV. No one listens to mom and dad about his uncanny ability to find and circumvent tape in order to remove an IV from himself. Thirty minutes later, a third IV in place and him asleep in the middle of the MRI, I am sitting on the curb beside the trailer, grateful it was not a hot day or a rainy one. Eric took the girls with him to retrieve the other MRIs to scan in...though why this hospital particularly needs them I don't see, but I can be compliant. Besides, should an emergency happen, now there are two places with all of his MRIs on board... that hospital and my backpack. As for Bradley, he fought on the way down into sleep and he fought his way out of it. After fifteen hours of no food...when he woke up he didn't stop crying till the straw from his milk cup went into his mouth. And he came up for air seven and a half ounces later and maybe ten minutes tops, he was quiet and happy to be sitting on Daddy's lap; ready to get down and explore this place and leave it behind as soon as possible.
Thirty eight days after the seizure happened we will meet with a Neurosurgeon at UCLA to have the MRI read for us. We take with us a lot of worry and some new information. When we met the Neurologist, we told her he'd never had a moment where he zoned out on us... now we have to say that he has had a minor episode where he checked out on me for twenty seconds and wasn't here. Not sure where his brain was, not sure what he might have been seeing...but the bottom line is...I have to mention it now. And I don't know what that means for him. We have an emergency medication that is always with us in case he has a seizure, we can only hope we never use it. It's in the backpack, the one that also has his emergency replacement button...we've had to use that. Now, I always have a can or two of extra Pediasure...cause I have learned the hard way that he won't always try what I find for him to eat when we are out and about. And I have determined that I better put something in there for me in case he does what he did during our last outing...which is eat his half and my half. Considering I can miss a meal or ten...that's always the best scenario! Needless to say, the backpack is getting heavier and heavier - never mind about my food, I can grab a sandwich when I get home, anything to lighten the load!
I try not to worry about Monday, but this time the outcome is not something I can control. I couldn't control the Fundoplication surgery but I could learn how to manage the button and take care of it and Bradley - so that gave me control back. Maybe I am controlling. I didn't think I was...but I must be, because being out of control of this part of Bradley's health right now, is really throwing me for a loop. And I know that the worry is a psychological burden and it just gets piled up on top of that backpack creating more weight...but it's still there and I can't make it go away. But I try to visualize Bradley running around healthy and happy, I close my eyes at night and I try to see that image before I sleep and being very turtlesque-like (yeah I know, totally not a word!), I push any other image down deep in my subconscious to be dealt with another day.
As for my little guy...he ROCKS! He screamed his say and once they left him alone on Monday he started his resilient path back towards his good humored self. I'm not sure where the road is headed for us right now...not sure I was ever sure; but, I know I was more confident before. Hopefully, Monday will bring a return of confidence and a whole lot of relief. Just have to wait...and man, I just LOVE to wait!!! Where did I put that sarcasm font?
Happy Thursday everyone!
One seizure that rocked our world, our family. One seizure that led to a CT scan, no fun! An EEG that he was awake for...more no FUN! And then a push by our very good Pediatrician to get him into the Neurologist to get the EEG read, a sedated MRI and finally the Neurosurgeon appointment to have that MRI read. Most of it has happened in a month...the MRI happened last Monday, the 12th of August and was a month to the day from the seizure. They didn't give him a little gas to dilate his veins to get the IV in and make the procedure less difficult for Bradley and his parents. Nope...they were old school... Mom and Dad got the joy of holding him down with two nurses. Bradley fought hard, really hard. He blew the first IV try...the second one took...but then his fear and pain as the medicine burned its way in caused him to yank out the second IV. No one listens to mom and dad about his uncanny ability to find and circumvent tape in order to remove an IV from himself. Thirty minutes later, a third IV in place and him asleep in the middle of the MRI, I am sitting on the curb beside the trailer, grateful it was not a hot day or a rainy one. Eric took the girls with him to retrieve the other MRIs to scan in...though why this hospital particularly needs them I don't see, but I can be compliant. Besides, should an emergency happen, now there are two places with all of his MRIs on board... that hospital and my backpack. As for Bradley, he fought on the way down into sleep and he fought his way out of it. After fifteen hours of no food...when he woke up he didn't stop crying till the straw from his milk cup went into his mouth. And he came up for air seven and a half ounces later and maybe ten minutes tops, he was quiet and happy to be sitting on Daddy's lap; ready to get down and explore this place and leave it behind as soon as possible.
Thirty eight days after the seizure happened we will meet with a Neurosurgeon at UCLA to have the MRI read for us. We take with us a lot of worry and some new information. When we met the Neurologist, we told her he'd never had a moment where he zoned out on us... now we have to say that he has had a minor episode where he checked out on me for twenty seconds and wasn't here. Not sure where his brain was, not sure what he might have been seeing...but the bottom line is...I have to mention it now. And I don't know what that means for him. We have an emergency medication that is always with us in case he has a seizure, we can only hope we never use it. It's in the backpack, the one that also has his emergency replacement button...we've had to use that. Now, I always have a can or two of extra Pediasure...cause I have learned the hard way that he won't always try what I find for him to eat when we are out and about. And I have determined that I better put something in there for me in case he does what he did during our last outing...which is eat his half and my half. Considering I can miss a meal or ten...that's always the best scenario! Needless to say, the backpack is getting heavier and heavier - never mind about my food, I can grab a sandwich when I get home, anything to lighten the load!
I try not to worry about Monday, but this time the outcome is not something I can control. I couldn't control the Fundoplication surgery but I could learn how to manage the button and take care of it and Bradley - so that gave me control back. Maybe I am controlling. I didn't think I was...but I must be, because being out of control of this part of Bradley's health right now, is really throwing me for a loop. And I know that the worry is a psychological burden and it just gets piled up on top of that backpack creating more weight...but it's still there and I can't make it go away. But I try to visualize Bradley running around healthy and happy, I close my eyes at night and I try to see that image before I sleep and being very turtlesque-like (yeah I know, totally not a word!), I push any other image down deep in my subconscious to be dealt with another day.
As for my little guy...he ROCKS! He screamed his say and once they left him alone on Monday he started his resilient path back towards his good humored self. I'm not sure where the road is headed for us right now...not sure I was ever sure; but, I know I was more confident before. Hopefully, Monday will bring a return of confidence and a whole lot of relief. Just have to wait...and man, I just LOVE to wait!!! Where did I put that sarcasm font?
Happy Thursday everyone!
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