Rules from a Seven year old!
In case you thought our oldest isn't funny; she's good for a chuckle or two as well as her sister. When she was seven years old she kept a journal, and it truly was a journal because she was more than willing to let Mom read it; in fact, she would bring it to me to see what she'd written and what she'd drawn. I chuckled at this and I didn't really think too much about this until she went a few days without bringing it to me. At first I thought that maybe the newness had worn off and she wasn't actually using the journal anymore. Then I thought...hmmm...or maybe she is wanting to keep something to herself because her journal went from journal to diary. So there I am cleaning her room - AGAIN - because she just couldn't seem to figure out the whole room cleaning thing at age 7 (go in her room now and she's a super neat freak). As I'm cleaning her room, her journal/diary is lying on her nightstand open, so I checked out her latest drawings - then I flipped the page and found this:
"Rule for Life #800: If Dad promises that you can watch a movie or play, your mom will make you take a nap first before you can watch a movie or play."
I chuckled at this and then thought, hey wait a minute...when did this happen? Did Dad and I actually fall on the opposite sides of a decision and not even know it. I mean we try really hard to stay on the same page, and we've tried really hard to not let the girls manipulate us against each other. And we've done pretty well, cause our girls are not so great at being super slick at hiding stuff, I mean they try to hide stuff from us, but they haven't figured out how to do it successfully yet. Yet! We are fully aware that someday, they will stop fighting each other and instead will start working together and when that happens - we're toast. I might as well order the pretty white jackets that let us hug ourselves, because when they start working as a Team, their Dad and I are going to need them!
So somewhere in her mind our ten year old has a list of 799 other rules that I can only guess about. I'm thinking that I'm going to be learning them as we go along. Here's hoping that they come at me in small bits and pieces - otherwise, I'm going to be spending the next few years trying to hide the deer in the headlights look that I get every time she throws something new at me. Raising girls isn't for the faint of heart... :-)
Tuesday, October 16, 2012
Monday, October 15, 2012
Saying Thank You
We Can Never Say Thank You Enough
When we had Bradley my world turned upside down and in an attempt to right it again, I turned to research as the soothing balm to heal a tattered soul. I am a researcher. There is no other way to describe me. The Library is like my personal oasis, you give me a question and I will find answers in the quiet aisles surrounded by the smell of old books; a sweet perfume that has always brought me peace and quite honestly, contentment. Sitting in a hospital in Japan, I was sadly lacking in books, I was sadly lacking in the kind of information that grounds me, offers me a foundation that I can learn to feel comfortable standing on and one I can claim. The books would come and the research would start pouring in and it would come quickly so much that at one point I turned it off in order to just sit and think...to absorb the life in my arms and marvel at the blue of his eyes, the serenity that poured from them into mine. Even on my worst days; and they would come and come often, my son watched me with such intensity and such patience - ever so eloquently screaming out that he loved me through the only way an infant can, that calm and steady gaze.
But his lessons for me are another story, and another tale for another day. Because I know that I am now and have from the moment he entered the world a student at his knee, constantly trying to grasp the next lesson that he has to teach me. My first lesson came with his arrival. There were plenty of books, blogs, websites...plenty of information that made me weep for other parents and the trials they went through. The way hospitals have treated the children, how nurses and doctors have offered to supply the family with a place to take the child, a phone number of a place that will take your baby if you don't want it...and this just goes on and on. I was stunned that this was prevalent, I was horrifed that this was a common practice, today in a time where it was perfectly all right to take your baby and raise him at home with you, together almost as if you are a family...wait, that's what you are right? A family. And we aren't talking archaic books that were written thirty years ago when it wasn't common practice, where my son would have been pushed towards an Institution. I shudder at the thought, I feel so sad for those families - so heartbreaking.
But right now I wanted to say a thank you. Our birth story was difficult yes, but not made worse by those that surrounded us. Some could argue that being in Japan, it wasn't like there was an easy way to send him off to someone else - I mean we were on a military base for goodness sake. There's a Japanese orphange, but it isn't like they want our American child, or like those who are on a list wanting a child with Down Syndrome were anywhere around. You could argue that sure...but that wasn't even implied to us. Ours was very different, ours was life changing, and in some ways life saving.
The Midwife who delivered my son told us he was gorgeous as she encouraged me to open my eyes after that last push and see him. She always greeted him with "Hi Handsome!" and it was love at first sight. The Corpsman that held him first and checked him over, gave him his first bath was gentle with him; but gentle with us too. He told us what a special little boy we had (He since has come to walk with us at a Buddy Walk - yeah he meant it!). The underlying message was, "It will be okay." Our Midwife gave us the news, and we started the process of working through the stages of grief to say good-bye to the little boy we thought we were having in order for us to move to the little boy we had. We didn't know anything, so she brought us information, and after he gave Bradley his exam and the official diagnosis the pediatrician brought us information too. They reached out to us, holding us close as we came to terms with this very different and very new reality. They gave us peace, but each time someone came into our room, they brought peace and calm.
I was determined to teach him to nurse, and I fought hard, and all the corpsman that had any lactation experience helped me. We all worked hard and when we left the hospital, Bradley was valiantly trying to latch on. We were in Yokosuka, but we were stationed at Atsugi; our Chaplain from Atsugi came all the way down to sit with us and he brought information with him too. His was less clinical, less of the everything that can go wrong and bit more of the optimistic sort. We appreciated that.
We had Bradley at 12:23 am on a Saturday morning. When Monday hit, we were inundated with doctor visits. The Dermatologist who found my Melanoma while I was pregnant came to see us. She checked a small cyst that Bradley had on his hand and assured me that it was not connected to my Melanoma, that it would go away in time. But we were told to come by any time we were down for appointments so that she could check him. My surgeon visited and after making sure I was okay, he set up for him to go back in and widen the margins around my site. We saw another Pediatrician and we saw our Midwife, because basically everyday she came to see us...as if determined to guide us through by her will and love alone.
We went home on a Tuesday and Friday when I was hemoraghing, it was our Midwife meeting us in the ER, and the OB/GYN who had also seen me: she arranged for me to go back to Labor & Delivery to be taken care of. Her reasoning was that they knew me, and we'd been through enough that we needed the familiarity of that crew to help us through this new crisis. As long as Eric could stay overnight, then Bradley would be able to stay in the room with me so I could try to nurse him. Eric helped me once, but I'd lost so much blood I was bottomed out and slept through most of the stay in the hospital. But I still got to hold my son and see him. That hospital, the crew there - they made that possible for us.
We were embraced by our Navy Hospital Crew. We were missing the family at home, we were feeling a bit lost because none of our family had been able to make it to Japan for his birth. We were worn out, and worn down. Fighting Melanoma while I was pregnant, then Bradley's diagnosis...we thought that was enough to break us, but then I wouldn't stop bleeding and was back in the hospital - we should have broken.
Maybe we did. Where others get a baby with Down Syndrome and are encouraged to do the unthinkable and give them up; not us. When we were given our baby and a Down Syndrome diagnosis - some amazing people were responsible for understanding the moment and the need. They chose to take the time, make the effort, and help put us back together again. They believed in us and for that - we are Grateful! We can never say thank you enough! God Bless them and the hearts that let them love our son!
When we had Bradley my world turned upside down and in an attempt to right it again, I turned to research as the soothing balm to heal a tattered soul. I am a researcher. There is no other way to describe me. The Library is like my personal oasis, you give me a question and I will find answers in the quiet aisles surrounded by the smell of old books; a sweet perfume that has always brought me peace and quite honestly, contentment. Sitting in a hospital in Japan, I was sadly lacking in books, I was sadly lacking in the kind of information that grounds me, offers me a foundation that I can learn to feel comfortable standing on and one I can claim. The books would come and the research would start pouring in and it would come quickly so much that at one point I turned it off in order to just sit and think...to absorb the life in my arms and marvel at the blue of his eyes, the serenity that poured from them into mine. Even on my worst days; and they would come and come often, my son watched me with such intensity and such patience - ever so eloquently screaming out that he loved me through the only way an infant can, that calm and steady gaze.
But his lessons for me are another story, and another tale for another day. Because I know that I am now and have from the moment he entered the world a student at his knee, constantly trying to grasp the next lesson that he has to teach me. My first lesson came with his arrival. There were plenty of books, blogs, websites...plenty of information that made me weep for other parents and the trials they went through. The way hospitals have treated the children, how nurses and doctors have offered to supply the family with a place to take the child, a phone number of a place that will take your baby if you don't want it...and this just goes on and on. I was stunned that this was prevalent, I was horrifed that this was a common practice, today in a time where it was perfectly all right to take your baby and raise him at home with you, together almost as if you are a family...wait, that's what you are right? A family. And we aren't talking archaic books that were written thirty years ago when it wasn't common practice, where my son would have been pushed towards an Institution. I shudder at the thought, I feel so sad for those families - so heartbreaking.
But right now I wanted to say a thank you. Our birth story was difficult yes, but not made worse by those that surrounded us. Some could argue that being in Japan, it wasn't like there was an easy way to send him off to someone else - I mean we were on a military base for goodness sake. There's a Japanese orphange, but it isn't like they want our American child, or like those who are on a list wanting a child with Down Syndrome were anywhere around. You could argue that sure...but that wasn't even implied to us. Ours was very different, ours was life changing, and in some ways life saving.
The Midwife who delivered my son told us he was gorgeous as she encouraged me to open my eyes after that last push and see him. She always greeted him with "Hi Handsome!" and it was love at first sight. The Corpsman that held him first and checked him over, gave him his first bath was gentle with him; but gentle with us too. He told us what a special little boy we had (He since has come to walk with us at a Buddy Walk - yeah he meant it!). The underlying message was, "It will be okay." Our Midwife gave us the news, and we started the process of working through the stages of grief to say good-bye to the little boy we thought we were having in order for us to move to the little boy we had. We didn't know anything, so she brought us information, and after he gave Bradley his exam and the official diagnosis the pediatrician brought us information too. They reached out to us, holding us close as we came to terms with this very different and very new reality. They gave us peace, but each time someone came into our room, they brought peace and calm.
I was determined to teach him to nurse, and I fought hard, and all the corpsman that had any lactation experience helped me. We all worked hard and when we left the hospital, Bradley was valiantly trying to latch on. We were in Yokosuka, but we were stationed at Atsugi; our Chaplain from Atsugi came all the way down to sit with us and he brought information with him too. His was less clinical, less of the everything that can go wrong and bit more of the optimistic sort. We appreciated that.
We had Bradley at 12:23 am on a Saturday morning. When Monday hit, we were inundated with doctor visits. The Dermatologist who found my Melanoma while I was pregnant came to see us. She checked a small cyst that Bradley had on his hand and assured me that it was not connected to my Melanoma, that it would go away in time. But we were told to come by any time we were down for appointments so that she could check him. My surgeon visited and after making sure I was okay, he set up for him to go back in and widen the margins around my site. We saw another Pediatrician and we saw our Midwife, because basically everyday she came to see us...as if determined to guide us through by her will and love alone.
We went home on a Tuesday and Friday when I was hemoraghing, it was our Midwife meeting us in the ER, and the OB/GYN who had also seen me: she arranged for me to go back to Labor & Delivery to be taken care of. Her reasoning was that they knew me, and we'd been through enough that we needed the familiarity of that crew to help us through this new crisis. As long as Eric could stay overnight, then Bradley would be able to stay in the room with me so I could try to nurse him. Eric helped me once, but I'd lost so much blood I was bottomed out and slept through most of the stay in the hospital. But I still got to hold my son and see him. That hospital, the crew there - they made that possible for us.
We were embraced by our Navy Hospital Crew. We were missing the family at home, we were feeling a bit lost because none of our family had been able to make it to Japan for his birth. We were worn out, and worn down. Fighting Melanoma while I was pregnant, then Bradley's diagnosis...we thought that was enough to break us, but then I wouldn't stop bleeding and was back in the hospital - we should have broken.
Maybe we did. Where others get a baby with Down Syndrome and are encouraged to do the unthinkable and give them up; not us. When we were given our baby and a Down Syndrome diagnosis - some amazing people were responsible for understanding the moment and the need. They chose to take the time, make the effort, and help put us back together again. They believed in us and for that - we are Grateful! We can never say thank you enough! God Bless them and the hearts that let them love our son!
Sunday, October 14, 2012
Day 14 - Awareness of Down Syndrome
We Went for a Walk Today!
We planned to walk this morning for ALS in order to promote research and find a cure. We had a wonderful visit last night and none of the kids got to bed on time. So once we got home we put one sleeping little guy to bed and helped two little girls asleep on their feet to theirs. Withing thinking too much about it, I wrote the Blog last night before bed, then hooked up Bradley to eat, headed to bed and didn't even think to set an alarm. I mean why would I? This kid is like his own alarm clock, he is up everyday between 6:00 and 6:30 a.m. I would love for him to sleep in, I mean especially on a Saturday morning...those are always my mornings. But no, he thinks that no matter what time he goes to sleep, he should be greeting the day that early in the morning. Everyday...well, except today of course. Today he decided to sleep past 8:00. For a walk that was to happen twenty minutes away...well, I was pretty sure...I wouldn't be getting there on time. My girls were still snoozing soundly and I was trying very hard to wake up.
So we didn't make the 9:30 start time we were given...and I figured we were well past our ability to make the walk...but when I sent my regrets over text, I found out that the walk didn't even start till 11:00... even I can make that. So I got the girls moving and we motored off without a backward glance...hoping to figure out the way as we went. Surprisingly, we made our way and we found it! And literally, just in time. The girls and I did the 2 mile walk in support of finding a cure for ALS...and in honor and in loving memory of my precious Uncle, who fought it and lost his battle but never his dignity or his magnificent spirit. So today I took my two girls to walk for him and remember him, and while we walked I said a prayer of gratitude for the family he left behind, for the love he created around him, and for hope - that another person, another family, will not lose a battle with this disease.
My little man stayed home with dad, he did after all have surgery a mere few days ago, we didn't see him enjoying the scrunched up time in the stroller needed for the walk. Plus, here in October...man was it HOT! There should not be this kind of heat in this month...we need FALL!
So we did our part in some small way to help, and it felt pretty good. There are just so many areas where we have no control...when we get a moment of feeling like we are trying to help to make a difference, somewhere - somehow, we like to try to take it. I guess that's where the Buddy Walk comes in for us. We don't know what tomorrow brings for Bradley, but we do know that if we don't find some way that we can make a difference in Bradley's future, find some way that we feel like we are making a difference in his life...our feeling of complete helplessness will eat at us. We have to feel like we are making strides towards a better tomorrow for him, we wear our shirts in his honor and use them as the sounding board for questions that people have and hope that we can help prepare another family for the introduction of a child with an extra chromosome. We hope that we can pave the way for others to see the person and forget the fear of the extra chromosome, and we're hoping that that will make the biggest difference in Bradley's life.
October is Down Syndrome Awareness month - but everyday is a day you can reach out and connect in a positive way with someone who is just a bit different from you.
We planned to walk this morning for ALS in order to promote research and find a cure. We had a wonderful visit last night and none of the kids got to bed on time. So once we got home we put one sleeping little guy to bed and helped two little girls asleep on their feet to theirs. Withing thinking too much about it, I wrote the Blog last night before bed, then hooked up Bradley to eat, headed to bed and didn't even think to set an alarm. I mean why would I? This kid is like his own alarm clock, he is up everyday between 6:00 and 6:30 a.m. I would love for him to sleep in, I mean especially on a Saturday morning...those are always my mornings. But no, he thinks that no matter what time he goes to sleep, he should be greeting the day that early in the morning. Everyday...well, except today of course. Today he decided to sleep past 8:00. For a walk that was to happen twenty minutes away...well, I was pretty sure...I wouldn't be getting there on time. My girls were still snoozing soundly and I was trying very hard to wake up.
So we didn't make the 9:30 start time we were given...and I figured we were well past our ability to make the walk...but when I sent my regrets over text, I found out that the walk didn't even start till 11:00... even I can make that. So I got the girls moving and we motored off without a backward glance...hoping to figure out the way as we went. Surprisingly, we made our way and we found it! And literally, just in time. The girls and I did the 2 mile walk in support of finding a cure for ALS...and in honor and in loving memory of my precious Uncle, who fought it and lost his battle but never his dignity or his magnificent spirit. So today I took my two girls to walk for him and remember him, and while we walked I said a prayer of gratitude for the family he left behind, for the love he created around him, and for hope - that another person, another family, will not lose a battle with this disease.
My little man stayed home with dad, he did after all have surgery a mere few days ago, we didn't see him enjoying the scrunched up time in the stroller needed for the walk. Plus, here in October...man was it HOT! There should not be this kind of heat in this month...we need FALL!
So we did our part in some small way to help, and it felt pretty good. There are just so many areas where we have no control...when we get a moment of feeling like we are trying to help to make a difference, somewhere - somehow, we like to try to take it. I guess that's where the Buddy Walk comes in for us. We don't know what tomorrow brings for Bradley, but we do know that if we don't find some way that we can make a difference in Bradley's future, find some way that we feel like we are making a difference in his life...our feeling of complete helplessness will eat at us. We have to feel like we are making strides towards a better tomorrow for him, we wear our shirts in his honor and use them as the sounding board for questions that people have and hope that we can help prepare another family for the introduction of a child with an extra chromosome. We hope that we can pave the way for others to see the person and forget the fear of the extra chromosome, and we're hoping that that will make the biggest difference in Bradley's life.
October is Down Syndrome Awareness month - but everyday is a day you can reach out and connect in a positive way with someone who is just a bit different from you.
Saturday, October 13, 2012
Day 13 - Become Aware of Down Syndrome in October!
Day 13 - Running Towards the Middle
Thirteen days down and I'm still here typing away, just trying to keep up. After we brought Bradley home I was constantly worried about him, and frankly...that hasn't changed. One worry fades and a new worry takes its place - perhaps it is just the way of things, perhaps that is the new normal that we have to become accustomed too. We're trying to adjust to this new normal...this new life. We worry, we hope, we pray and we laugh. Yes, though some might believe that adding a child with an extra chromosome would put so much pressure on the family that there would be no space for laughter...such is not the case in our house. Maybe we're crazy, maybe we're completely disconnected. Or maybe we're just, okay. Perhaps we've learned the secret truth that comes with an extra chromosome, and perhaps it's this: Life will challenge us with its twists and turns, life will try to knock us down, but deep inside - where it counts...we know that life will be okay. And no matter how hard we try to deny it and to squelch the desire - we will have laughter in our house. And every time I think to deny this feeling, this belief that sometimes hits me; my youngest daughter works very hard to tickle my funny bone.
The girls had a Volleyball tournament this morning, so last night my husband pulled out the cooler to clean it up and get it ready for today. My daughter is in charge of cleaning out the cat box, making sure they are fed and watered. So she cleaned out the box, opened the front door and pointed out that the garage door was up. "Whoops!" Good thing we don't put anything expensive in there!
Getting into the car later, I notice that she left the bag on the porch. So I ask her: "I thought we had a deal that if you cleaned out the cat box you took the bag straight to the trashcan, not leave it on the porch?"
Her reply: "Yeah but Mom, the garage door was open."
My reply: "Okay? So?"
Her answer: "Yeah but someone could have been in the garage and grabbed me. So would you rather have a stinky front porch or have someone jump out, grab me and take off?"
As she stared at me expectantly I looked at her: "I'm thinking about it." And God love this child whose sense of humor is so much like her mother's she gave me a fake cry before dissolving into giggles!
These are the moments that tell me that we're more than okay; and as long as we stick together...we'll continue to be okay. This little family of geese are going to learn to fly and we're going to do it together!
Thirteen days down and I'm still here typing away, just trying to keep up. After we brought Bradley home I was constantly worried about him, and frankly...that hasn't changed. One worry fades and a new worry takes its place - perhaps it is just the way of things, perhaps that is the new normal that we have to become accustomed too. We're trying to adjust to this new normal...this new life. We worry, we hope, we pray and we laugh. Yes, though some might believe that adding a child with an extra chromosome would put so much pressure on the family that there would be no space for laughter...such is not the case in our house. Maybe we're crazy, maybe we're completely disconnected. Or maybe we're just, okay. Perhaps we've learned the secret truth that comes with an extra chromosome, and perhaps it's this: Life will challenge us with its twists and turns, life will try to knock us down, but deep inside - where it counts...we know that life will be okay. And no matter how hard we try to deny it and to squelch the desire - we will have laughter in our house. And every time I think to deny this feeling, this belief that sometimes hits me; my youngest daughter works very hard to tickle my funny bone.
The girls had a Volleyball tournament this morning, so last night my husband pulled out the cooler to clean it up and get it ready for today. My daughter is in charge of cleaning out the cat box, making sure they are fed and watered. So she cleaned out the box, opened the front door and pointed out that the garage door was up. "Whoops!" Good thing we don't put anything expensive in there!
Getting into the car later, I notice that she left the bag on the porch. So I ask her: "I thought we had a deal that if you cleaned out the cat box you took the bag straight to the trashcan, not leave it on the porch?"
Her reply: "Yeah but Mom, the garage door was open."
My reply: "Okay? So?"
Her answer: "Yeah but someone could have been in the garage and grabbed me. So would you rather have a stinky front porch or have someone jump out, grab me and take off?"
As she stared at me expectantly I looked at her: "I'm thinking about it." And God love this child whose sense of humor is so much like her mother's she gave me a fake cry before dissolving into giggles!
These are the moments that tell me that we're more than okay; and as long as we stick together...we'll continue to be okay. This little family of geese are going to learn to fly and we're going to do it together!
Friday, October 12, 2012
Day 12 - October: Down Syndrome Awareness Month
Day 12 - October: Down Syndrome Awareness Month
It's funny how life works. It's a sequence of events, a line-up of moments that will make you ecstatic or leave you devastated with all the emotions in between. It's that moment of bartering that you have with your Faith, that - I will give you this if you will give me that. It's the listing of your priorities that will help to define you in a way you never thought.
I offer this one last little story about Bradley's last surgery. As we stood over him in the Pre-Op room, we were joking about the ironic twist that this room was so much nicer and roomier than the room he was supposed to spend the night in. Not only did this room have a bathroom, there was this awesomely comfortable chair along with a really large flatscreen TV. As I helped Bradley play with this toy the nurse gave him, my hand brushed my ear and I felt something sharp. Further inspection revealed four sharp prongs...I took my earring out and I confirmed what I had feared. I had lost my diamond out of my earring. Now I am an extremely sentimental person, as much as I loved my diamond earrings, I loved them the most because they were a present from Eric after the birth of our second child. They represented a moment when he was out in the store somewhere and had a feeling that he wanted to buy me a special gift simply because he loved me and he loved me for giving him two amazing and beautiful little girls. So the moment I realized it was gone, I had this sad moment of losing that...not so much the diamond. But there, sitting in front of me was our son, getting ready to be sedated - something he doesn't do great with - and then be worked on. I found I couldn't muster a tear, or anger, only a sort of sad "Oh well." And I know that sounds weird, but at the moment that I learned of this loss, it was the best I could give it. I was focused on Bradley, and I couldn't help but think that if I had to lose something today, then I would willingly lose the diamond, all the while knowing we can't replace it right now. And it was that simple...the planets aligned and though I felt regret for the loss, I also didn't think about it again for quite a few hours.
Well, we made it home and I thought to put the remaining earring in the jewelry box. I got up from where Bradley and I were playing with that same toy, on the floor by the couch. As I stood up, a glint caught my eye and I reached down and there on the floor lay my diamond. Somehow a morning of showering and rushing around, dropped it safely on the carpet in our living room and it sat and waited until the moment that Bradley chose that spot to play on. I don't know how it happened or why, but for some reason, the diamond came back to me and at some point I'll get the earrings fixed. I gave it up for lost with only a vague notion that it was possible that I could have lost it at home... but in the car, in the shower, down a drain or three...here possibly, found not probably. The material was lost and not mourned because me son was everything. I find it so amazing that for some reason, the universe, faith, something chose to give it back to me. I brought home a healing son and was grateful - finding something that was lost was a really nice perk to end the day.
It's funny how life works. It's a sequence of events, a line-up of moments that will make you ecstatic or leave you devastated with all the emotions in between. It's that moment of bartering that you have with your Faith, that - I will give you this if you will give me that. It's the listing of your priorities that will help to define you in a way you never thought.
I offer this one last little story about Bradley's last surgery. As we stood over him in the Pre-Op room, we were joking about the ironic twist that this room was so much nicer and roomier than the room he was supposed to spend the night in. Not only did this room have a bathroom, there was this awesomely comfortable chair along with a really large flatscreen TV. As I helped Bradley play with this toy the nurse gave him, my hand brushed my ear and I felt something sharp. Further inspection revealed four sharp prongs...I took my earring out and I confirmed what I had feared. I had lost my diamond out of my earring. Now I am an extremely sentimental person, as much as I loved my diamond earrings, I loved them the most because they were a present from Eric after the birth of our second child. They represented a moment when he was out in the store somewhere and had a feeling that he wanted to buy me a special gift simply because he loved me and he loved me for giving him two amazing and beautiful little girls. So the moment I realized it was gone, I had this sad moment of losing that...not so much the diamond. But there, sitting in front of me was our son, getting ready to be sedated - something he doesn't do great with - and then be worked on. I found I couldn't muster a tear, or anger, only a sort of sad "Oh well." And I know that sounds weird, but at the moment that I learned of this loss, it was the best I could give it. I was focused on Bradley, and I couldn't help but think that if I had to lose something today, then I would willingly lose the diamond, all the while knowing we can't replace it right now. And it was that simple...the planets aligned and though I felt regret for the loss, I also didn't think about it again for quite a few hours.
Well, we made it home and I thought to put the remaining earring in the jewelry box. I got up from where Bradley and I were playing with that same toy, on the floor by the couch. As I stood up, a glint caught my eye and I reached down and there on the floor lay my diamond. Somehow a morning of showering and rushing around, dropped it safely on the carpet in our living room and it sat and waited until the moment that Bradley chose that spot to play on. I don't know how it happened or why, but for some reason, the diamond came back to me and at some point I'll get the earrings fixed. I gave it up for lost with only a vague notion that it was possible that I could have lost it at home... but in the car, in the shower, down a drain or three...here possibly, found not probably. The material was lost and not mourned because me son was everything. I find it so amazing that for some reason, the universe, faith, something chose to give it back to me. I brought home a healing son and was grateful - finding something that was lost was a really nice perk to end the day.
Thursday, October 11, 2012
Day 11 - Down Syndrome Awareness Month!
Day 11 - Desensitized?
Something has happened to us. I can't pinpoint the moment, I can't decide when or really where, but it's happened and there's no turning back for us. Somehow, we've graduated to a different group of parents. With our first child we were so green it's lucky the kid made it this far. We weren't neglectful, we were the opposite - and we still are too over protective. But then she wasn't completely healthy either. She gave us our first lessons in dealing with acid reflux...with the flirtation of surgeries because she was borderline between continuing medication and discussing surgery. Lucky for us, she was gaining some weight and developing ahead of time. But going through things with her was quickly teaching us how to hold her down for medicine, holding her down for clearing congestion, holding her down for needle pokes, and a couple IV insertions. We came out pale and traumatized, but hey...she's still here. Her sister, a few minor issues, but her reflux was not so bad. Her stuff came when she was older...and everything she does, she does it calmly and with a stoicism that astounds me and humbles me. But her stuff came after so much of Bradley's stuff...so maybe we taught her that...maybe the very few times she has seen him suffering through his stuff has made her so incredibly strong while making the older one so incredibly sensitive to his every sniffle. They are so different in how they handle pain, but neither way is the perfect way. One is all passion, one is all silent resolve...both are difficult to interpret. I don't know how much of this is part of their DNA, or how much is from what we created in their DNA and taught them once they were here...but we're working to make sure we are not missing the important stuff as we go along.
And we're looking really carefully now...because being Bradley's parents I am afraid is making us become desensitized. We worried about this latest surgery, but we also were calm, waiting quietly and without the obvious outward signs of fear. My bag was packed with what I would need to pass the night with him in the hospital, I was ready for the discomfort to me...ready to hold him all night if he needed it to keep him calm, or read all night in case I couldn't sleep and he could - I was ready. I even slept a little the night before we went. I think waking to check the clock a few times to make sure we didn't oversleep is very normal for any big day...and we both did that. At the hospital we didn't so much ask questions as supply information, making sure that every new person knew what they needed to ensure that Bradley was taken care of and given all that he needed. So worried after such a tough time in January we were focused on his breathing and how he came out of the surgery. And together with his doctors, he came out really well and we were able to bring him home.
Today I was thinking that we had flowed through it pretty well. That perhaps we were becoming too used to all this stuff and maybe that wasn't such a good thing. Maybe good that it doesn't take such a toll but tough that we have had to do it too much... And then I realized, we were becoming desensitized to the function, the necessity of the processes, but when it comes to the emotional side - nope, we're still pretty raw. I had to fight back tears when I said goodbye to my girls, because separating from them for something like this really strikes a cord in me. I slept because our life is exhausting and I am learning to sleep when I can even if it is not well. I felt relief to my very soul when they told us that they wouldn't be trying to stick him for his IV while he was awake, that they would be knocking him out with gas and then putting his IV in. And then I felt a new scar on my heart when we took note that it still took them five sticks to get it right. They asked us to hug and kiss him, then walk away while the nurse went the other way...it was really hard to turn around and not see him till he was out of sight; so much that, I looked over my shoulder until they were gone. And my breakfast, I got it down, not sure when we'd eat again and if I would be fasting for the night when Eric had to leave...but it sat in angry rebellion. With every development: good breathing, waking up, drinking water, another nap, some good eating, good venting of his tube, and a diaper...and I just started to feel better and better. When we were able to leave with him in our arms...it was surreal, as if we'd never even been there - like we had both somehow dreamed the same dream. But Bradley has a bandage on his belly and he's been offering kisses and cuddles all day...so well, we know it happened. The kisses and the cuddles are merely a perk - like his way of letting us know that we aren't so desensitized after all - we're just getting better. We've learned the art of staring at each monster long enough to take away its power to shock us, and then we can tame the fear and get back to Bradley, the sweet little boy patiently waiting for us to catch up. We're catching up a little quicker each time, but wonder what it would be like to not have too.
Something has happened to us. I can't pinpoint the moment, I can't decide when or really where, but it's happened and there's no turning back for us. Somehow, we've graduated to a different group of parents. With our first child we were so green it's lucky the kid made it this far. We weren't neglectful, we were the opposite - and we still are too over protective. But then she wasn't completely healthy either. She gave us our first lessons in dealing with acid reflux...with the flirtation of surgeries because she was borderline between continuing medication and discussing surgery. Lucky for us, she was gaining some weight and developing ahead of time. But going through things with her was quickly teaching us how to hold her down for medicine, holding her down for clearing congestion, holding her down for needle pokes, and a couple IV insertions. We came out pale and traumatized, but hey...she's still here. Her sister, a few minor issues, but her reflux was not so bad. Her stuff came when she was older...and everything she does, she does it calmly and with a stoicism that astounds me and humbles me. But her stuff came after so much of Bradley's stuff...so maybe we taught her that...maybe the very few times she has seen him suffering through his stuff has made her so incredibly strong while making the older one so incredibly sensitive to his every sniffle. They are so different in how they handle pain, but neither way is the perfect way. One is all passion, one is all silent resolve...both are difficult to interpret. I don't know how much of this is part of their DNA, or how much is from what we created in their DNA and taught them once they were here...but we're working to make sure we are not missing the important stuff as we go along.
And we're looking really carefully now...because being Bradley's parents I am afraid is making us become desensitized. We worried about this latest surgery, but we also were calm, waiting quietly and without the obvious outward signs of fear. My bag was packed with what I would need to pass the night with him in the hospital, I was ready for the discomfort to me...ready to hold him all night if he needed it to keep him calm, or read all night in case I couldn't sleep and he could - I was ready. I even slept a little the night before we went. I think waking to check the clock a few times to make sure we didn't oversleep is very normal for any big day...and we both did that. At the hospital we didn't so much ask questions as supply information, making sure that every new person knew what they needed to ensure that Bradley was taken care of and given all that he needed. So worried after such a tough time in January we were focused on his breathing and how he came out of the surgery. And together with his doctors, he came out really well and we were able to bring him home.
Today I was thinking that we had flowed through it pretty well. That perhaps we were becoming too used to all this stuff and maybe that wasn't such a good thing. Maybe good that it doesn't take such a toll but tough that we have had to do it too much... And then I realized, we were becoming desensitized to the function, the necessity of the processes, but when it comes to the emotional side - nope, we're still pretty raw. I had to fight back tears when I said goodbye to my girls, because separating from them for something like this really strikes a cord in me. I slept because our life is exhausting and I am learning to sleep when I can even if it is not well. I felt relief to my very soul when they told us that they wouldn't be trying to stick him for his IV while he was awake, that they would be knocking him out with gas and then putting his IV in. And then I felt a new scar on my heart when we took note that it still took them five sticks to get it right. They asked us to hug and kiss him, then walk away while the nurse went the other way...it was really hard to turn around and not see him till he was out of sight; so much that, I looked over my shoulder until they were gone. And my breakfast, I got it down, not sure when we'd eat again and if I would be fasting for the night when Eric had to leave...but it sat in angry rebellion. With every development: good breathing, waking up, drinking water, another nap, some good eating, good venting of his tube, and a diaper...and I just started to feel better and better. When we were able to leave with him in our arms...it was surreal, as if we'd never even been there - like we had both somehow dreamed the same dream. But Bradley has a bandage on his belly and he's been offering kisses and cuddles all day...so well, we know it happened. The kisses and the cuddles are merely a perk - like his way of letting us know that we aren't so desensitized after all - we're just getting better. We've learned the art of staring at each monster long enough to take away its power to shock us, and then we can tame the fear and get back to Bradley, the sweet little boy patiently waiting for us to catch up. We're catching up a little quicker each time, but wonder what it would be like to not have too.
Wednesday, October 10, 2012
Day 10 - Bringing Awareness of Awesome!
Day 10 - October is Down Syndrome Awareness Month!!!
WE'RE HOME! Hallelujah! Bradley did great today, better than we expected or maybe even feared. He is such an active boy, holding him down is always, always, so much work. The morning started in stages... 1:50 am...turn off the feeding pump...4:30 am...keep from launching the alarm clock through the nearest window or doorway...and find the shower. Surprisingly, we weren't the only ones on the road that early, bu luckily the traffic problems were all somewhere south of us. We checked into the Old part of Cottage Hospital and were given passes and directions to the temporary Pediatric ward (the old ICU). We were put into a room with all glass doors and a curtain, a little odd. I assessed my probably hotel room for the night and realized there was no bathroom, further assessment and I learned that I had to trek through the outer hospital halls to find a bathroom on my floor. Wondering how i was going to possibly turn into a Camel for the night, we tried to keep Bradley calm till surgery. Don't know why surgeons run later, but they do and Bradley really was not pleased by the delay...mostly he just wanted some milk...maybe some yogurt...you know breakfast. But in the midst we got to see some familiar faces, and that was reassuring. No one was happy that he needed surgery, but we were all happy to be standing in the same room together again.
As his anxiety peaked, he was given a Fisher Price Laptop to play with...it was so enthralling he rode all the way to the pre-op sitting up and playing with it, didn't even notice the trip. Because he was so in love with this toy, he was told to take the toy home with him. :-) Lucky Boy! He went to sleep fighting and woke up the same way, but his Oxygen levels were really good and he didn't need any breathing treatments or medication, so we were thrilled. The surgeon fixed his hernia and the Anesthesiologist (and the maturity of Bradley's body) worked to help him come out of surgery well and led the docs to write the order that he could go home after he successfully ate something. He took a nice long nap then woke up signing that he was ready to eat. And he was! He got to break in a brand new high chair and ate refried beans, sweet potatoes and chicken soup. Everyone was thrilled and within the hour we were on our way home again.
Bradley slept the whole way with his new laptop on his lap. We made it in time to pick the girls up from school, and both of them cried the moment they saw us. We held them tightly and showed them their brother safe and sound. Such worried little girls; so much more than they should know. But they rebounded well and managed to be fighting with each other before the hour was up. Nice that life can get back to normal so easily! Still, so good to be home and have the family back together again. Maybe now our littlest gosling can begin to heal and continue to grow stronger everyday.
Really difficult day with a really wonderful end! So relieved and Blessed! So grateful!
WE'RE HOME! Hallelujah! Bradley did great today, better than we expected or maybe even feared. He is such an active boy, holding him down is always, always, so much work. The morning started in stages... 1:50 am...turn off the feeding pump...4:30 am...keep from launching the alarm clock through the nearest window or doorway...and find the shower. Surprisingly, we weren't the only ones on the road that early, bu luckily the traffic problems were all somewhere south of us. We checked into the Old part of Cottage Hospital and were given passes and directions to the temporary Pediatric ward (the old ICU). We were put into a room with all glass doors and a curtain, a little odd. I assessed my probably hotel room for the night and realized there was no bathroom, further assessment and I learned that I had to trek through the outer hospital halls to find a bathroom on my floor. Wondering how i was going to possibly turn into a Camel for the night, we tried to keep Bradley calm till surgery. Don't know why surgeons run later, but they do and Bradley really was not pleased by the delay...mostly he just wanted some milk...maybe some yogurt...you know breakfast. But in the midst we got to see some familiar faces, and that was reassuring. No one was happy that he needed surgery, but we were all happy to be standing in the same room together again.
As his anxiety peaked, he was given a Fisher Price Laptop to play with...it was so enthralling he rode all the way to the pre-op sitting up and playing with it, didn't even notice the trip. Because he was so in love with this toy, he was told to take the toy home with him. :-) Lucky Boy! He went to sleep fighting and woke up the same way, but his Oxygen levels were really good and he didn't need any breathing treatments or medication, so we were thrilled. The surgeon fixed his hernia and the Anesthesiologist (and the maturity of Bradley's body) worked to help him come out of surgery well and led the docs to write the order that he could go home after he successfully ate something. He took a nice long nap then woke up signing that he was ready to eat. And he was! He got to break in a brand new high chair and ate refried beans, sweet potatoes and chicken soup. Everyone was thrilled and within the hour we were on our way home again.
Bradley slept the whole way with his new laptop on his lap. We made it in time to pick the girls up from school, and both of them cried the moment they saw us. We held them tightly and showed them their brother safe and sound. Such worried little girls; so much more than they should know. But they rebounded well and managed to be fighting with each other before the hour was up. Nice that life can get back to normal so easily! Still, so good to be home and have the family back together again. Maybe now our littlest gosling can begin to heal and continue to grow stronger everyday.
Really difficult day with a really wonderful end! So relieved and Blessed! So grateful!
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