Sunday, January 15, 2012
skip the light fandango
http://www.youtube.com/watch?v=CJIVz9nYx7I
Annie Lennox always struck me as a together woman. Annie probably would not have tripped three steps from the bottom down her own front stoop on a sunny Sunday afternoon 7 weeks ago.
Eight plates and a screw. Sounds like a drink.
Feeling thirsty? Apparently I was parched.
A swift ambulance ride with such a nice paramedic who was concerned about gently taking off my Danskos. When I told him he could cut them off, he balked as he knew they were expensive. Haha. Got love that.
The last 7 weeks have been a blur. It took me about two weeks to realize how serious this leg break was. William conveniently kept the meds coming quite regularly to keep me from trying to get up. Lacey, my mother-in-law, managed the chaos of four kids, birthday parties, meals which were delivered, carpools, playdates, and exams. A friend introduced me to Pinterest.com and between Houzz.com and Ziplist.com, I redecorated, renovated, bought presents, made presents, made meals by clicking on a photo icon and creating little fantasy notebooks of what my life would be like if money were no object and time were not an issue and I did not have a bum leg. It was entertaining. I found Hanging with Friends and had a great time getting my butt whooped around the globe. We managed Christmas, said adios to 2011 and visited friends with NYC and New Zealand.
I griped and tried to find the the lesson or the moral, but Aesop escaped me. William again shone brightly as Daddy superstar. As Porter told one of our guests, "When Mommy started the leg drugs, Daddy became in charge." Go ahead and laugh. We did. Will rocked and continues to be amazing.
I imagine the lesson was that we need each as we walk this earth. Kindness matters. Friends matter. Calling matters. Note cards still matter. Facebook matters. Family matters. In the past I had tried to be a person who recognized when someone might need a hand or a meal or a call. This year I really was not able to do that but generosity only works when someone receives with grace. Grace -- we began the year and ended learning grace by receiving so many thougthful meals and words. We remain in awe of others' capacity to reach out and help. In awe and full of gratitude.
Thank you.
Saturday, December 17, 2011
Resolution. Intention. Aspiration.
Flee from the concept or embrace it?
In looking ahead, how can we escape looking behind?
How can I adequately review our year?
It feels dishonest to spin everything glossy and sunny to remember a rosy view for what was a begrudgingly difficult year. It feels either Sylvia Pathian to play my misery is greater than yours or Pollyanna-ish to delight in all we've met.
We lived. We ate heartily. We laughed. We cried. We trolled the internet. We drove. We read. We sat. We waited. We grumbled. We visited doctors. We danced. We stayed at hospitals. We went to Ocracoke. We swam. We cheered. We yelled. We raked. We laundered. We baked. We played soccer. We played little league. We survived.
Stunningly, we were held by friends -- new ones and life-long.
If you ask Porter, he will tell you two things: 1) "I don't want to eat anyone else's food," and 2) "My cats."
If you ask Houlder, he will say: 1) "I can drive for you," and 2) "POTS."
If you ask Frazer, he will be silent or offer to lego/bey blade with you.
If you ask Dell, he will think. And, maybe he can tell you after you ask him 3-4 more times.
If you ask Will, he will shake his head and grimace and say 1) "Can it suck anymore?" and 2) "Will our kids ever do anything to help?"
My memories vary: the strength we found in each other, the exhaustion of it all, the kindness of friends, the path of our lives determined by our health, the tender time we need to give each other, the kindness Collegiate has shared, the intensely amazing community of Southampton, the tolerance of St. Thomas for atheist acolytes and unwavering offerings of prayers, the tolerance and patience needed to raise four boys, the generosity of homeschooling buddies always willing to let Frazer tag along, the willingness of my dad and Will's parents to help, the unexpected gift of Kenyon K80ans, the cuteness of kittens, the delight of believing in Santa and the tooth fairy, the sunsets and cocktails at Ocracoke, the willingness of neighbors to drive my kids to and from school, the support of friends, and the fortitude of my husband.
Our resolution is simple: keep on. Our intention is wellness. Our aspiration is home improvement.
It has been rewarding to have an place to process our lives and an honor to have been read.
Our resolution is simple: keep on. Our intention is wellness. Our aspiration is home improvement.
It has been rewarding to have an place to process our lives and an honor to have been read.
Saturday, November 12, 2011
In honor of my grandmother
Born into the Jazz Age, my grandmother Helen Gerber Bloom embraced many opportunities previously not encouraged for young women. Born on Valentine's Day, she later lost her brother on her birthday and chose to celebrate on a different day. It was a selfless act that embodies much of who she was.
Graduating from Pembroke/Brown with one of the first degrees in Occupational Therapy, she began her life as a career woman. Meeting Mort and marrying him was a change in many ways. Their honeymoon on an ocean liner to Havana was punctuated by an event that many of her generation remember the way my peers remember the Space Challenger blowing up: the bombing of Pearl Harbor. After the captain had received word of the tragedy, the ocean liner went black and sailed to Cuba in the dark. Grandma recalled the palpable fear passengers and crew felt about the possibility of another attack in the Atlantic. There is a beautiful glamorous black and white photo of Helen and Mort in Havana on their honeymoon, but their life together began in shadow of World War II.
My grandmother raised two bright capable children. Despite her early beginnings to be a modern, independent woman, she spent the majority of her life supporting Mort and caring for her children. Helen worked hard to provide, care and love each child. Amazingly she remained independent and vibrant through her bridge, avid reading and friendships she made in both New Jersey and Florida.
Helen never worried about what she did not have but if what she had would be enough. She was careful, thrifty and willing to go without. She enjoyed nice things but found joy in even small things.
She always encouraged my education and my curiosity. She was one of the few who thought teaching was a natural fit.
I remember her holding her first great grandchild, Houlder, in 1995. She had such a smile. It was a treat for everyone to know her life provided for that moment. In 2000, I flew down with three boys four years old and under, and she took us around to the safari and the parks. She enjoyed them and shared many stories of what it was like for her as a mother. The best part was that she offered no advice on how I should be doing it, but only kind words about how I was doing it. She was such a positive person.
Helen was a worrier-optimist as only a Jewish grandmother could be. With concern and a sincere frustration that my grandfather's loss of vision prevented him from reading, my grandmother only expressed how hard this was on Mort. While I felt it might have been harder on her to keep him entertained, she did not complain. She stressed his discomfort; her compassion was a lesson.
In 2008, we drove down in March and spent some time with Grandma. She had been a widow a relatively short time and was more introspective than in the past. She managed pleasantly and without complaint the challenges and troubles of her circulatory issues. She focused on staying active with her bridge while acknowledging that few of her early friends were around anymore. Her mind was sharp as ever. Our conversations would lead her to sending me articles later relating to our discussions.
Loving until the end, she sent me an article recently about Houlder's chronic health issues. As difficult as managing her own mobility had become, she never once complained to me and continued to express understanding and concern for someone else.
In the end, her life may be most memorable for her willingness to put others first and never gripe about her own discomfort. She did not want those of us who survive her to linger through the slowness passing can be and surrendered to the process, once alone, to pass onto whatever is next without being a burden to others. Without complaint. Strong. Independent. Selfless. Helen Gerber Bloom, my grandmother.
Sunday, August 14, 2011
The Cave
When I first started writing about the journey with Houlder, I felt like we were managing each moment. Our lives had shifted and changed substantially without us understanding; we functioned by putting out fires and wearing the face of normal.
The greatest gift Vanderbilt gave us was July. Once we knew we were going, we stopped searching and looking for answers and doctors. It was SRA full time. We had decided that we could not change or fix and handle anything, and our boys -- especially the other three -- needed normal. They needed practice and schedule and friends and the joys that only that little old place offers. It may be wrong to attribute so much joy to one place, but it works for us.
In my last blog a month ago, Houlder was readying for his final swim. It was an evening with exciting races, friends and pleasant weather. Houlder swam his heart. He began struggling after the first touch and he had 75 more yards to go. He raced friends who swam magnificently. After the second touch, I cheered like a fool to distract myself from jumping in to pull him out. He told me later that when he came into the final turn, he wanted to get out but he could hear so many people cheering him on. He told me, "It gave me the strength to keep swimming." I could see his body struggle and shake. My tears were quietly unstoppable. He touched the wall; people cheered. Will and his coach Mike went to him as he did not look like he could make it out.
William going to him is significant. He is never spooked. When Frazer was born amid emergency and needing assistance, he never blinked. When Dell had a scare with a health issue, he was steady. He just never worried. He waits and assesses. Will attending was tender and frightening. It took over 30 minutes for Houlder to stop having tremors and shaking.
But the amazing thing about him is that he appreciated how people encouraged him.
He slept for almost two weeks following this swim.
He managed mite movie with Porter and pasta night but had to skip the jello wrestling and pep rally.
He slept through champs.
I did not know if he would make it to banquet. At our house, SRA champs week is like Christmas week. Full of so much joy and delight and fun. It is amazing to me the inter-generational conversations and fun. The banquet is like Christmas morning opening the presents. It is not the trophies but the senior speeches which this year were astounding in their frank expression of how SRA is a part of them and will always be a safe place and fun place and special place no matter where people move or how life can be tricky. It is also the dancing and celebrating with everyone afterwards. The electric sly, the conga lines with young and old and the sense that this is the final evening of our collective soul for the season.
Saturday he met with a coach and a dad and helped with the slide show. He took a nap. He felt like he could go. He clapped when his brothers and friends got their trophies. He asked if he would even get the trophy. I said, "Sure. I paid the registration. You're golden."
Then, this amazing little recreation association which dedicates itself to providing old fashioned family fun -- like going to camp with your kids -- reached across the illness and the longing and spoke about Houlder. His coaches recognized him for offering Dedication, Devotion and Determination in a special 3D award in honor of a family who loved Southampton so much that after they moved to NoVA, they continued to travel to Richmond to swim for SRA in the summers for many years.
When Mike began introducing the award, that was the moment William broke. People applauded and stood. Houlder was surprised. I could think of others who could have received it because at SRA there are many who qualify. But it was sweet. Dell turned to Houlder and was uncharacteristically kind, and Houlder was shockingly willing to hear it (they are still siblings less than two apart and bickering is a way of life). We held joy.
The banqueting continued with dancing, cheering, running and talking.
Little did the throngs know that their moms had held two secret meetings to share a little something with them.
http://www.youtube.com/watch?v=zrQ37X3s24M&feature=feedf
We moms -- 40-50 of us -- average age of old enough, had some jello courage and danced with our kids and friends and laughed and "had a good night."
The next day was like that post-Christmas blues. We just were.
I spent the next week trying to plan for Frazer's year of homeschooling and asking Houlder every few hours, "What do you think about school? How do you feel?" I guess that I hoped that the answer might change.
Surf and sand and good friends carried us through last week in Ocracoke.
High school life begins tomorrow for Dell as he tries out for soccer by training the next two weeks.
We had hoped to find full answers to Houlder's health by summer's end and have him return to school. We had hoped that we would have sloughed through come to the other side healed reviving the standard chaos.
In lieu of that, we had July.
We are still holding hope's hand.
We don't know what the best thing is for Houlder. He cannot handle a half day. We wonder if he could manage one class.
We wonder if we should find a lyme disease expert. We wonder if we should go to the doctor in California. We wonder if we have found the answer.
This experience has been heady. For all the sadness and frustration and anger, there has been more joy.
Not many moms get to spend so much time with their teenager. Here is a song form a group Will shared with Houlder who in turned shared with me. "I will hold on hope."
http://www.youtube.com/watch?v=3KkUeRPjc-Y
Mumford and Sons
The greatest gift Vanderbilt gave us was July. Once we knew we were going, we stopped searching and looking for answers and doctors. It was SRA full time. We had decided that we could not change or fix and handle anything, and our boys -- especially the other three -- needed normal. They needed practice and schedule and friends and the joys that only that little old place offers. It may be wrong to attribute so much joy to one place, but it works for us.
In my last blog a month ago, Houlder was readying for his final swim. It was an evening with exciting races, friends and pleasant weather. Houlder swam his heart. He began struggling after the first touch and he had 75 more yards to go. He raced friends who swam magnificently. After the second touch, I cheered like a fool to distract myself from jumping in to pull him out. He told me later that when he came into the final turn, he wanted to get out but he could hear so many people cheering him on. He told me, "It gave me the strength to keep swimming." I could see his body struggle and shake. My tears were quietly unstoppable. He touched the wall; people cheered. Will and his coach Mike went to him as he did not look like he could make it out.
But the amazing thing about him is that he appreciated how people encouraged him.
He slept for almost two weeks following this swim.
He managed mite movie with Porter and pasta night but had to skip the jello wrestling and pep rally.
He slept through champs.
I did not know if he would make it to banquet. At our house, SRA champs week is like Christmas week. Full of so much joy and delight and fun. It is amazing to me the inter-generational conversations and fun. The banquet is like Christmas morning opening the presents. It is not the trophies but the senior speeches which this year were astounding in their frank expression of how SRA is a part of them and will always be a safe place and fun place and special place no matter where people move or how life can be tricky. It is also the dancing and celebrating with everyone afterwards. The electric sly, the conga lines with young and old and the sense that this is the final evening of our collective soul for the season.
Saturday he met with a coach and a dad and helped with the slide show. He took a nap. He felt like he could go. He clapped when his brothers and friends got their trophies. He asked if he would even get the trophy. I said, "Sure. I paid the registration. You're golden."
Then, this amazing little recreation association which dedicates itself to providing old fashioned family fun -- like going to camp with your kids -- reached across the illness and the longing and spoke about Houlder. His coaches recognized him for offering Dedication, Devotion and Determination in a special 3D award in honor of a family who loved Southampton so much that after they moved to NoVA, they continued to travel to Richmond to swim for SRA in the summers for many years.
When Mike began introducing the award, that was the moment William broke. People applauded and stood. Houlder was surprised. I could think of others who could have received it because at SRA there are many who qualify. But it was sweet. Dell turned to Houlder and was uncharacteristically kind, and Houlder was shockingly willing to hear it (they are still siblings less than two apart and bickering is a way of life). We held joy.
The banqueting continued with dancing, cheering, running and talking.
Little did the throngs know that their moms had held two secret meetings to share a little something with them.
http://www.youtube.com/watch?v=zrQ37X3s24M&feature=feedf
We moms -- 40-50 of us -- average age of old enough, had some jello courage and danced with our kids and friends and laughed and "had a good night."
The next day was like that post-Christmas blues. We just were.
I spent the next week trying to plan for Frazer's year of homeschooling and asking Houlder every few hours, "What do you think about school? How do you feel?" I guess that I hoped that the answer might change.
Surf and sand and good friends carried us through last week in Ocracoke.
High school life begins tomorrow for Dell as he tries out for soccer by training the next two weeks.
We had hoped to find full answers to Houlder's health by summer's end and have him return to school. We had hoped that we would have sloughed through come to the other side healed reviving the standard chaos.
In lieu of that, we had July.
We are still holding hope's hand.
We don't know what the best thing is for Houlder. He cannot handle a half day. We wonder if he could manage one class.
We wonder if we should find a lyme disease expert. We wonder if we should go to the doctor in California. We wonder if we have found the answer.
This experience has been heady. For all the sadness and frustration and anger, there has been more joy.
Not many moms get to spend so much time with their teenager. Here is a song form a group Will shared with Houlder who in turned shared with me. "I will hold on hope."
http://www.youtube.com/watch?v=3KkUeRPjc-Y
Mumford and Sons
Monday, July 18, 2011
Vanderbilt
Nashville. Who knew?
The four day trip there and back was informative, fun, and somewhat overwhelming.
Vanderbilt is beautiful! We visited both the Adult Heart and Vascular side as well as the Children's hospital. By far the most organized place we have been and friendly. We truly got a sense that patients were why careproviders were there which was nice after ten hours in the car. We also did some sightseeing and saw Nashville's full scale replica of the Parthenon complete with Athena so huge that Houlder and Will looked like minny mites standing next to her.
http://www.nashville.gov/parthenon/
We also went to the Frist Center and saw a thorough and amazing Andy Warhol exhibit. No matter what folks think of him, just seeing Keith Richards in a photo from his late teens or early 20's before the ravages of his rock-n-roll life was worth the entire exhibit. I never would have thought Richards was such a sweet baby faced kid.
http://www.fristcenter.org/site/default.aspx
On Tuesday Houlder went to the adult side and had autonomic function testing.
http://www.mc.vanderbilt.edu/root/vumc.php?site=adc
On Wednesday we met the pediatric autonomic doctor. He was caring and smart.
Unfortunately, despite a bizallion phone calls and emails and physical requests, all Houlder's paperwork was not there. We had every test result up to about a week before we went minus tilt table. I had been unable to get those local results the day of the test or even order them a day later. I had Vanderbilt request them as well which we also signed off on. It should not take an act of God.
So, his diagnosis is relatively certain but waiting for more results. We also learned that at Vandy, they screen some of tests to rule out adrenal tumors differently than they do here. The doctor still needs to find out if one quality was tested. According to him, without it, the tumor cannot be ruled out. The tumor is non-cancerous and could be removed. It is rare but right now we are not dealing with the average bear.
I am trying to follow up on the test results and what not. But, summer makes some things tougher than they should be.
We are still waiting for some blood work Vanderbilt did, but it looks like Houlder has something called POTs. Doctor there is calling it orthostatic intolerance while waiting for blood work and tilt results. Doctor said that everything in file pointed to POTs. In true form, Houlder's test results flip flopped while there. At home, his heart rate has been an issue but not blood pressure. There, blood pressure was issue. Frankly, it does not matter in that treatment is same and expected healing time is the same.
This site explains autonomic dysfunction well:
http://www.dinet.org/index.htm
Houlder is not getting enough blood circulating in his brain. When he stands, the blood goes to his feet and not enough to his brain. It most likely has been going on since last fall when he started having some troubles concentrating, but we ignored them. In fact many symptoms may have been there but he just kept functioning. The headache in January was severe enough that it captured him. While he has been released from the constant grip of the headache, too much up and down motion and activity give him one fairly quickly.
Fortunately there are medicines to try to treat this. He has been on one for a bit now. It may be what helped reduce headache issue.
Unfortunately, the doctor felt that it will be at least 6 months to a year before we notice improvement and will likely take 3-4 years for him to improve enough to return to his life. Pretty much encompasses high school.
The upside is that he will return to to himself.
The thing that we have spent the last several days trying to get our brain around is what it will look like.
Another Collegiate family has had to deal with this for over 5 years. They met Houlder and I for lunch on Friday. The mom said that she told folks that it was like having the worst hang over of your life, every day -- all day long. Doesn't sound too groovy!
In a day he may have one good hour but often times not. He is himself -- constantly trying. He has temporary memory issues and concentration issues. School is looking less possible. A sweet friend came over the other day to try to teach Houlder some trig; it was a bit of a struggle. Poor friend had to keep repeating the problem over and over. Yesterday when Houlder went and saw Harry Potter with a friend, during the movie the friend had to wake him up. He gets tired and just conks out.
While we were gone, three families who took our other children had to endure a swim meet with a lightening delay keeping them up until 1am. Folks took photos and texted them to us as we headed to Nashville. Our friends have been great. Sara took care of the kids once they returned home Tuesday evening. Porter does not remember all the hours Sara took care of him because he was so little. He was a bit of handful asking me on the phone who was this woman who kept putting him in time out. The perfect young woman, dude.
For now, we need to meet with Collegiate and determine what -- if anything -- Houlder can do this fall. We hope to take it one semester at a time. We cannot fathom another way. If there were, we would be trying it. I know lots of parents out there who go to school a second time through their kids, but I am not smart enough to do Houlder's math! He will be taking the road less taken but hopefully not for 3-4 years. We are praying for a return to normal sooner than later.
Tonight is the final swim meet of the summer season. Houlder will get to swim his beloved breast stroke. He has not practiced, because it wipes him out. He cannot dive off the block -- afraid of him passing out. But, it will be great; being in the water even briefly brings him joy. The opposing team's head coach is one of Collegiate's swim coaches. He is letting Houlder start in the water. The kindness of others still amazes me, and it is what we are trying to focus on. It is Frazer's final meet of the season. He has done shockingly well. Still no Phelps in the pool, but it is nothing short of unbelievable compared to last year. He has even managed some place ribbons which is feat he has not before due to the limited nature of novice male swimmers in the upper ages. Dell has had a great season and hopes to hit a triple tonight. It is a long shot but one he would love to see happen. And sassy P-Bear is the first 6 year old mite in our family to qualify for champs. The kid whizzes through the lane cracking us up the entire time. He is not a baby anymore. But, at SRA there are lots of kids qualifying for champs. Porter just gets a Q after his name and the glory of knowing he did that and no one -- not even the uber god-like big brother did that.
With school activities starting in four weeks, we will embrace what is left of summer. Leave the doctors alone for now and enjoy some of that old SRA magic.
The four day trip there and back was informative, fun, and somewhat overwhelming.
Vanderbilt is beautiful! We visited both the Adult Heart and Vascular side as well as the Children's hospital. By far the most organized place we have been and friendly. We truly got a sense that patients were why careproviders were there which was nice after ten hours in the car. We also did some sightseeing and saw Nashville's full scale replica of the Parthenon complete with Athena so huge that Houlder and Will looked like minny mites standing next to her.
http://www.nashville.gov/parthenon/
We also went to the Frist Center and saw a thorough and amazing Andy Warhol exhibit. No matter what folks think of him, just seeing Keith Richards in a photo from his late teens or early 20's before the ravages of his rock-n-roll life was worth the entire exhibit. I never would have thought Richards was such a sweet baby faced kid.
http://www.fristcenter.org/site/default.aspx
On Tuesday Houlder went to the adult side and had autonomic function testing.
http://www.mc.vanderbilt.edu/root/vumc.php?site=adc
On Wednesday we met the pediatric autonomic doctor. He was caring and smart.
Unfortunately, despite a bizallion phone calls and emails and physical requests, all Houlder's paperwork was not there. We had every test result up to about a week before we went minus tilt table. I had been unable to get those local results the day of the test or even order them a day later. I had Vanderbilt request them as well which we also signed off on. It should not take an act of God.
So, his diagnosis is relatively certain but waiting for more results. We also learned that at Vandy, they screen some of tests to rule out adrenal tumors differently than they do here. The doctor still needs to find out if one quality was tested. According to him, without it, the tumor cannot be ruled out. The tumor is non-cancerous and could be removed. It is rare but right now we are not dealing with the average bear.
I am trying to follow up on the test results and what not. But, summer makes some things tougher than they should be.
We are still waiting for some blood work Vanderbilt did, but it looks like Houlder has something called POTs. Doctor there is calling it orthostatic intolerance while waiting for blood work and tilt results. Doctor said that everything in file pointed to POTs. In true form, Houlder's test results flip flopped while there. At home, his heart rate has been an issue but not blood pressure. There, blood pressure was issue. Frankly, it does not matter in that treatment is same and expected healing time is the same.
This site explains autonomic dysfunction well:
http://www.dinet.org/index.htm
Houlder is not getting enough blood circulating in his brain. When he stands, the blood goes to his feet and not enough to his brain. It most likely has been going on since last fall when he started having some troubles concentrating, but we ignored them. In fact many symptoms may have been there but he just kept functioning. The headache in January was severe enough that it captured him. While he has been released from the constant grip of the headache, too much up and down motion and activity give him one fairly quickly.
Fortunately there are medicines to try to treat this. He has been on one for a bit now. It may be what helped reduce headache issue.
Unfortunately, the doctor felt that it will be at least 6 months to a year before we notice improvement and will likely take 3-4 years for him to improve enough to return to his life. Pretty much encompasses high school.
The upside is that he will return to to himself.
The thing that we have spent the last several days trying to get our brain around is what it will look like.
Another Collegiate family has had to deal with this for over 5 years. They met Houlder and I for lunch on Friday. The mom said that she told folks that it was like having the worst hang over of your life, every day -- all day long. Doesn't sound too groovy!
In a day he may have one good hour but often times not. He is himself -- constantly trying. He has temporary memory issues and concentration issues. School is looking less possible. A sweet friend came over the other day to try to teach Houlder some trig; it was a bit of a struggle. Poor friend had to keep repeating the problem over and over. Yesterday when Houlder went and saw Harry Potter with a friend, during the movie the friend had to wake him up. He gets tired and just conks out.
While we were gone, three families who took our other children had to endure a swim meet with a lightening delay keeping them up until 1am. Folks took photos and texted them to us as we headed to Nashville. Our friends have been great. Sara took care of the kids once they returned home Tuesday evening. Porter does not remember all the hours Sara took care of him because he was so little. He was a bit of handful asking me on the phone who was this woman who kept putting him in time out. The perfect young woman, dude.
For now, we need to meet with Collegiate and determine what -- if anything -- Houlder can do this fall. We hope to take it one semester at a time. We cannot fathom another way. If there were, we would be trying it. I know lots of parents out there who go to school a second time through their kids, but I am not smart enough to do Houlder's math! He will be taking the road less taken but hopefully not for 3-4 years. We are praying for a return to normal sooner than later.
Tonight is the final swim meet of the summer season. Houlder will get to swim his beloved breast stroke. He has not practiced, because it wipes him out. He cannot dive off the block -- afraid of him passing out. But, it will be great; being in the water even briefly brings him joy. The opposing team's head coach is one of Collegiate's swim coaches. He is letting Houlder start in the water. The kindness of others still amazes me, and it is what we are trying to focus on. It is Frazer's final meet of the season. He has done shockingly well. Still no Phelps in the pool, but it is nothing short of unbelievable compared to last year. He has even managed some place ribbons which is feat he has not before due to the limited nature of novice male swimmers in the upper ages. Dell has had a great season and hopes to hit a triple tonight. It is a long shot but one he would love to see happen. And sassy P-Bear is the first 6 year old mite in our family to qualify for champs. The kid whizzes through the lane cracking us up the entire time. He is not a baby anymore. But, at SRA there are lots of kids qualifying for champs. Porter just gets a Q after his name and the glory of knowing he did that and no one -- not even the uber god-like big brother did that.
With school activities starting in four weeks, we will embrace what is left of summer. Leave the doctors alone for now and enjoy some of that old SRA magic.
Friday, July 1, 2011
Tennesse Bound Despite Abated Headache
 |
| Dell |
On June 10th, Houlder received botox to stop the headache. Yes, paid cold hard cash to a neurologist in Bethesda for that gem of a treatment option.
He came home and felt worse than he had felt -- ever.
Slept almost non-stop for 48 hours.
Had four cardiac incidents in 12 hours, headed to cardiologist and wore a holter monitor to take 24 hour worth of ekg readings.
8 days later with a still intense headache, he could not help himself and swam a partial practice with SRA.
10 days after Botox, Houlder still had headache but decided to swim back stroke at the meet. He had not been in pool except for this partial practice.
I am glad to say that he lived.
And at this meet, William spoke to one of our neighbors who also teaches at Collegiate. William mentioned how we had been looking to get to Vanderbilt. Well, her brother-in-law is a caridologist at Vanderbilt. Vanderbilt which has one of the best and most comprehensive autnomic diagnosis and treatment centers in the country. A neighbor.
The night was beautiful.
Good news.
Hope.
And five weeks after Frazer's surgery, he swam in two events. Really, some of the medical stuff has been stupefying.
 |
| Frazer shaking hands |
A week later, I had an appointment. The appointment would be in 2 weeks (July 12 and 13 as a start).
Okay. Amazing. Flat out unbelieveable.
Another friend was headed to Mayo in MN and texted to see if she could take anything out for Houlder. She left with two binders.
A tilt table test administered by an old friend who we were in a babysitting co-op with.
The world felt small and intimate, but still no answers.
A friend secured the option of going to California to see a doctor about retro-viral illnesses. In medical terms, we were looking for zebras.
And in the mean time, the headache has abated. It returns multiple times a day. He often almost passes out, but he has been to two more swim practices and seen the doctor at UVA again and is having an MRI on Wednesday.
Vanderbilt has called twice to inquire and has read his binder. Today they called to move his appointment ahead one day to add in more testing before the meeting with the doctor.
Mayo friend called. Doctors say just go through ER.
Whacked out medical system.
I think we can put the 10,000 lakes on hold and the Commodores are looking good.
http://www.youtube.com/watch?v=HIRGNzVIz6Y
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| Porter |
solipsism
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| Frazer getting ready to swim breaststroke. |
What’s real?
Do I know?
Writing this blog earnestly began as a means of documenting the work Frazer and I did together homeschooling. It was a useful, private tool which I only shared with a few family members and friends. When Frazer was hospitalized in January, we were blessed with caring hearts and friendly concerns. The blog was a natural extension of how to communicate efficiently with friends.
It morphed.
Inspired by some other friends who blog publicly, I opened the privacy controls and posted on Facebook.
I let go.
And I found that when I sat in the hospital room at night, thoughtful kind responses held me. Isolated but not alone, friends from long ago and across the country and over the oceans connected electronically.
It was difficult to grasp.
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| Dell's graduation, June 9, 2011 |
I would read my posts and cringe with the verb tense errors and spelling errors and poor proof reading. My sentiments were released and available for consumption, and I had not had the energy or presence of mind to think longer or better or clearer.
That anyone even read the blog is a tremendous testament to my kids.
A nagging sense of creating my own private Idaho kept rising.
http://www.youtube.com/watch?v=n7t7cGwN7_0
An inner world in which I could not escape the the medical world and could no longer define the boundaries of my angst. A world in which I would write lists of things to do and stop mid-way to care for someone or research more or lately just stare into space.
I began a blog about solipsism. Was I creating reality that no one else saw?
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| Porter mite party 2011 |
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| Dell during Frazer and Porter's fencing feista! |
These months of writing and being with the mystery of what is going on with Houlder has helped me control knee-jerk responses and try to frame what we are living. I have tried to avoid exisitential rants, pity parties and full-metal jacket scream fests.
But, is it True?
I have been wanting to write about this idea but shied away when David Brooks,’ with his crisp excellent writing and somehow radically moderate ideas, wrote about the dynamic nature of our country -- democracy and republic -- in the The Politics of Solipsism.
http://www.nytimes.com/2011/05/06/opinion/06brooks.html
How could I even begin to discuss this grist mill when he was discussing truly meaty and pertinent and well-crafted ideas? Seemed audacious to try.
Persistently that word would jump out at a stop light, while waiting for lab work, during swim practice, or while trying to find patience to deal with a 6 year old. I sensed that we were living a life somehow separate.
People have been unexpectedly kind. Unexpectedly generous . Unexpectedly concerned.
So, why think that our experience is so singular? Why fluctuate? Why not ride the wave?
Fear?
Egocentricism? -- that’s what David Foster Wallace and Jonathan Franzen would say.
It feels like McCarthy’s The Road. An isolated life, trying to get through, to manage parental love and being blind to the community around us and that’s when I know I am in too deep, too far gone to find a realistic view. I find I have created a world in which I choose what to say and how to say it. How infinitely selfish that enables me to be.
The ultimate trap of the adolescent mind seeing life beyond oneself.
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