I forgot my bag of wonders when we went to giraffeboy's eye doctor appointment the other day. The kids are getting older, and I wrongly assumed they didn't need me to bring so many distractions for these appointments. And as I sat there in the waiting room waiting for the drops to dilate his eyes, I recognized a kindred spirit across the waiting room, who gladly shared some books with my kids, making the 2 1/2 hour appointment more bearable. Once again, I was so appreciative of the bond shared with other moms in my position.
We're the MOSKS, or Moms Of "Sick" Kids. You can recognize us in specialist's waiting rooms across the country. We're the Moms whose kids go to the doctor more often than they go to the mall, whose kids have entire pages in their address books for the numbers of all their various specialists. We're the ones who drive long distances, sometimes even flying across the country, in order to get our kids into the right doctors who know our kids' disorders. Were the ones who can tell you our kids' days off from school next year before the last school year even ends, because we're trying to plan our kids' appointments around their days off, so they miss as little school as possible. We network online with other parents whose kids share the same condition, hoping to give our kids the best life and medical treatment possible. And we are the ones who aren't afraid to tell a complete stranger about our kids' conditions, hoping to spread awareness and also change how the world sometimes sees our children as "different."
I've never met another MOSK at the doctor whose kids had marfan syndrome, but I have learned of so many other challenges a child can face from my conversations with them. Our kids have heart problems, eye problems, orthopedic problems, or a combination of these. They have down syndrome, muscular dystrophy, heart disease, and any number of other medical conditions. Although varied in their challenges they face, they are all amazing. They have learned over the years to be patient, and the waiting rooms we've shared have not been their first, and certainly won't be their last.
You can recognize a fellow MOSK in a waiting room with a quick glance around, especially at our eye doctor. While many of the parents bring their kids sans toys or entertainment, my fellow MOSK's have their bag of wonders in tow. The bag is simple: books, coloring supplies, snacks, our kid's favorite toy. But for the kids who visit these places frequently enough to be bored with the doctor's toys, it is essential. And for the parent whose kids visit once a year or are new around the place, it isn't necessary. But for those of us who have a membership card to the MOSK group, we visit frequently and have learned to adapt to make the trip bearable. And somewhere along this journey to diagnosis and treatment, we've lost the need to hide from each other what our kids face, and have instead learned to let down the walls we so often build and honestly discuss our kids' conditions.
Which brings us back to the other day. I looked over and saw the mom and her daughter, bag of wonders in tow, and struck up a conversation. We talked about her daughter's eye condition she was born with, I shared about the eye issues my kids face from their marfan syndrome, and she generously shared some of the bags contents to entertain my kids. Chances are, we will never see each other again, as I have rarely run into the same MOSK a second time. But I am grateful for the knowledge I've gained from other MOSKS over our many conversations, and the reminder that the challenges my kids face are like those of so many others. I didn't ask for a membership card to this club, but I have enjoyed meeting some of the various other members, and gaining a knowledge and appreciation for the challenges they've faced.
Tuesday, June 26, 2012
Sunday, May 27, 2012
Sandals
My husband wore sandals today. We took a road trip around Lake Pepin, enjoyed the nice weather along the river, and during a stop for cheese, beer and ice cream about half way around I realized he was sockless in sandals. I didn't say anything when I noticed, afraid I would ruin the moment, afraid an innocent comment would send him back into socks and shoes indefinitely. So when he finally acknowledged it as we got nearer to our house. I was overjoyed and proud of him.
So what? I know most of you are asking that question right now. So here's the deal. My husband is 36 years old. I have been with him since we were both 19, and not once have I seen him wear sandals when it didn't involve water. Even then, it was only in the last 5 years that he traded in water shoes that fully covered his feet for a pair of sandals. My husband has hammer toes, a trait that my kids are slowly showing signs of, that leave his toes an intricate weaving, resembling a work of art. They are beautiful, interesting, uniquely his, but to him they have always been something to hide, a source of difference in a world of straight toes. He has always been amazed by my feet, not in a foot fetish type of way, but in the way you marvel at something you covet. So to see his feet exposed to the world is a huge thing.
I can't say I don't get it, that need to hide the parts of you that are different, that people might notice and exclaim over. I have always been overweight, and I'm not talking about a few pounds, and the initial trip into my swimsuit every time I've gone into a pool has always been a dreaded experience for me. Once in the water, I'm able to let it go, but the walk from the safety of a cover-up to the edge of the pool or beach seems like miles to me. But I do it. I love to swim. And more importantly, I won't let my weight stop me from enjoying the water with my kids, who love to swim too. So I get it, I really do.
For my husband, marfan syndrome has also left him with a slightly protruding sternum, and so in addition to his foot sensitivity he doesn't like to wear thin shirts, or things that cling to his chest. Getting him to swim with the kids has been a work in progress, and I'm glad to say he's finally reached a point where he does it without a fight, and enjoys it too. Someday, maybe he'll even reach the point of comfort where he can swim without a shirt, but that doesn't really matter to me. Being in the water with us is enough.
I don't think I truly got the big deal about his chest protrusion until recently. Maybe I'm just used to it after all these years, and it's just another feature that makes him who he is. But a recent experience helped me get it much more. I was with his aunt waiting for a minor surgery, and the anesthesiologist was doing a medical history preparing to do her job. "What's this?" she asked, poking his aunt's protruding sternum. It was so insensitive, so thoughtless, and unnecessary. And yet I realized in that moment, it was not the first time she had been asked that way, that it was probably an experience that many marfs, including my husband had faced. And it suddenly made sense why he was so sensitive about it. How else would you react to being asked that throughout your life? Who can blame a person for hiding the things that make them different from others when that has been their experience?
Which takes us back to today. We talk often about the need for both of us to find acceptance of ourselves, so we can teach our children to love themselves for who they are. Since so many of the things that might visibly differentiate our kids from their friends are related to their marfan syndrome, much of the burden to set that example falls on Giraffedaddy. And today, one more wall was torn down. one more victory in the fight for self acceptance and self confidence was won. And this wife couldn't be more proud of the amazing man she's married to.
So what? I know most of you are asking that question right now. So here's the deal. My husband is 36 years old. I have been with him since we were both 19, and not once have I seen him wear sandals when it didn't involve water. Even then, it was only in the last 5 years that he traded in water shoes that fully covered his feet for a pair of sandals. My husband has hammer toes, a trait that my kids are slowly showing signs of, that leave his toes an intricate weaving, resembling a work of art. They are beautiful, interesting, uniquely his, but to him they have always been something to hide, a source of difference in a world of straight toes. He has always been amazed by my feet, not in a foot fetish type of way, but in the way you marvel at something you covet. So to see his feet exposed to the world is a huge thing.
I can't say I don't get it, that need to hide the parts of you that are different, that people might notice and exclaim over. I have always been overweight, and I'm not talking about a few pounds, and the initial trip into my swimsuit every time I've gone into a pool has always been a dreaded experience for me. Once in the water, I'm able to let it go, but the walk from the safety of a cover-up to the edge of the pool or beach seems like miles to me. But I do it. I love to swim. And more importantly, I won't let my weight stop me from enjoying the water with my kids, who love to swim too. So I get it, I really do.
For my husband, marfan syndrome has also left him with a slightly protruding sternum, and so in addition to his foot sensitivity he doesn't like to wear thin shirts, or things that cling to his chest. Getting him to swim with the kids has been a work in progress, and I'm glad to say he's finally reached a point where he does it without a fight, and enjoys it too. Someday, maybe he'll even reach the point of comfort where he can swim without a shirt, but that doesn't really matter to me. Being in the water with us is enough.
I don't think I truly got the big deal about his chest protrusion until recently. Maybe I'm just used to it after all these years, and it's just another feature that makes him who he is. But a recent experience helped me get it much more. I was with his aunt waiting for a minor surgery, and the anesthesiologist was doing a medical history preparing to do her job. "What's this?" she asked, poking his aunt's protruding sternum. It was so insensitive, so thoughtless, and unnecessary. And yet I realized in that moment, it was not the first time she had been asked that way, that it was probably an experience that many marfs, including my husband had faced. And it suddenly made sense why he was so sensitive about it. How else would you react to being asked that throughout your life? Who can blame a person for hiding the things that make them different from others when that has been their experience?
Which takes us back to today. We talk often about the need for both of us to find acceptance of ourselves, so we can teach our children to love themselves for who they are. Since so many of the things that might visibly differentiate our kids from their friends are related to their marfan syndrome, much of the burden to set that example falls on Giraffedaddy. And today, one more wall was torn down. one more victory in the fight for self acceptance and self confidence was won. And this wife couldn't be more proud of the amazing man she's married to.
Wednesday, May 23, 2012
A Mother's Intuition
One month ago I sat at a meeting with various members of our school's special education staff and my husband, discussing the social situation for my son at school, and the possibility of testing him for social disorders. The meeting stemmed from my son's spring conference, where his teacher told us that giraffeboy had "no friends". I asked if it was possible to look into this at the conference, but as I sat at the meeting and listened to the school psychiatrist describe his brief observations of my son, I already knew what they would find, and I wondered again about the difficulty of being a mom during the tough times.
To me, "Mother's Intuition" is that ability that we as mother's have to know there is a problem before anyone else does, or to perceive what our child needs before they tell us. It varies from the basic packing snacks and drinks before we leave the house to stave off our kids hunger (and before you argue that this is common sense, when was the last time your husband packed the kids snacks or beverages when you didn't have to tell him to?) to knowing something is wrong in your gut before someone says something or something happens. It is the second kind that is the tough times, the kind that you know will differentiate your child yet again from what is "normal", the kind that will lead to the revelation that something happened to your child that was bad, or the kind that means you will start on another long journey. What makes this kind hardest is that they come with things you can't "fix" for them, problems not easily solved, and they leave you feeling like an inadequate parent. They leave you with the "what if he'd had a better mom?" kind of questions that none if us like to ask ourselves.
I can distinctly remember the first time that my "Mother's Intuition" resulted in a whirlwind of events and I wondered to myself "what have I done?" My daughter was just over a day old, and as I sat holding her after our last visitors of the day had left the hospital, I remember thinking "something isn't right". The best way to describe it was that she was wheezing. So I called my nurse, and they took her to the nursery to check her out better. Fast forward less than an hour and my full term daughter had been admitted to the NICU. There they hooked her up to a litany of machines, wires everywhere, and her three days in the NICU had begun. Thankfully for us, when all was said and done it was just fluid left in her lungs that didn't get pushed out during birth because she was a c-section baby, and my daughter was just fine. But those three days of waiting for an answer while she endured various tests were some of the scariest days of my life.
There are times in life too where my "Mother's intuition" has failed me. My daughter's diagnosis of marfan syndrome is the one that stands out the most. I wasn't prepared for her positive genetic test, and it hit me hard when we found out. I really had no idea, and I really thought she didn't have it. Even when it comes to this situation with giraffeboy, I always just assumed he'd be the kid whose happy with only a few close friends. It wasn't until he got into kindergarten that I began to really worry there was more to it than that. And even then it took me more than a year to really acknowledge what I'd begun to suspect and push for the testing. So it's definitely not a foul-proof sense for me, or at least I don't always listen to it.
Which brings us back to yesterday. I sat again at a new meeting table with many of the same staff at our school. The results of the month of testing and survey filling-out were back. And the results were what I suspected all along. My son has an Autism Spectrum Disorder. It doesn't change who he is or how I feel about him. It doesn't change how much I love him. He's still the kid who is so smart, whose smile can make my entire day, who gives spontaneous hugs and kisses, and who will randomly say "I love you mom" to me for no apparent reason. He's high-functioning to be sure, but it's still there. One more challenge he will face. One more road block he'll have to overcome. And I will be there with him every step of the way making sure he's not alone, making sure he knows how much I love him. I don't have all the answers to help him right now, but I will be doing everything I can to get them.
After all, that's what a "mother's intuition"is for. It's the horn that rings in our heads and hearts to warn us that we should prepare for battle. And even if our "enemy" changes every time, being a mother means we'll fight the war no matter how big the problem. We'll fight it until we find a solution, fueled by our best weapon, our unending supply of love.
To me, "Mother's Intuition" is that ability that we as mother's have to know there is a problem before anyone else does, or to perceive what our child needs before they tell us. It varies from the basic packing snacks and drinks before we leave the house to stave off our kids hunger (and before you argue that this is common sense, when was the last time your husband packed the kids snacks or beverages when you didn't have to tell him to?) to knowing something is wrong in your gut before someone says something or something happens. It is the second kind that is the tough times, the kind that you know will differentiate your child yet again from what is "normal", the kind that will lead to the revelation that something happened to your child that was bad, or the kind that means you will start on another long journey. What makes this kind hardest is that they come with things you can't "fix" for them, problems not easily solved, and they leave you feeling like an inadequate parent. They leave you with the "what if he'd had a better mom?" kind of questions that none if us like to ask ourselves.
I can distinctly remember the first time that my "Mother's Intuition" resulted in a whirlwind of events and I wondered to myself "what have I done?" My daughter was just over a day old, and as I sat holding her after our last visitors of the day had left the hospital, I remember thinking "something isn't right". The best way to describe it was that she was wheezing. So I called my nurse, and they took her to the nursery to check her out better. Fast forward less than an hour and my full term daughter had been admitted to the NICU. There they hooked her up to a litany of machines, wires everywhere, and her three days in the NICU had begun. Thankfully for us, when all was said and done it was just fluid left in her lungs that didn't get pushed out during birth because she was a c-section baby, and my daughter was just fine. But those three days of waiting for an answer while she endured various tests were some of the scariest days of my life.
There are times in life too where my "Mother's intuition" has failed me. My daughter's diagnosis of marfan syndrome is the one that stands out the most. I wasn't prepared for her positive genetic test, and it hit me hard when we found out. I really had no idea, and I really thought she didn't have it. Even when it comes to this situation with giraffeboy, I always just assumed he'd be the kid whose happy with only a few close friends. It wasn't until he got into kindergarten that I began to really worry there was more to it than that. And even then it took me more than a year to really acknowledge what I'd begun to suspect and push for the testing. So it's definitely not a foul-proof sense for me, or at least I don't always listen to it.
Which brings us back to yesterday. I sat again at a new meeting table with many of the same staff at our school. The results of the month of testing and survey filling-out were back. And the results were what I suspected all along. My son has an Autism Spectrum Disorder. It doesn't change who he is or how I feel about him. It doesn't change how much I love him. He's still the kid who is so smart, whose smile can make my entire day, who gives spontaneous hugs and kisses, and who will randomly say "I love you mom" to me for no apparent reason. He's high-functioning to be sure, but it's still there. One more challenge he will face. One more road block he'll have to overcome. And I will be there with him every step of the way making sure he's not alone, making sure he knows how much I love him. I don't have all the answers to help him right now, but I will be doing everything I can to get them.
After all, that's what a "mother's intuition"is for. It's the horn that rings in our heads and hearts to warn us that we should prepare for battle. And even if our "enemy" changes every time, being a mother means we'll fight the war no matter how big the problem. We'll fight it until we find a solution, fueled by our best weapon, our unending supply of love.
Friday, March 30, 2012
Marfan Disney World
We just finished the first week back to school after spring break. My friend's Facebook accounts are filled with pictures of their fun vacations taken, and as I've been dreaming of someday being able to afford the trip to Florida or some other exciting place, the bills have come in for our yearly vacation to what I like to call Marfan Disney World.
So what is Marfan Disney World, you wonder? It's a place we visit for a day every February, the four of us trekking the 30 minute or so ride anxious for the days adventures. The whole time spent there is less than 4 hours, but the cost per child is about $750 dollars (this year). The money spent there wouldn't quite cover a week at the real Disney for us, but easily two years worth would.
Marfan Disney World isn't at all like the real theme park. You aren't guaranteed a fun time, and if it "rains" it's hard to remember the good parts of it. But if it's sunny, there isn't a better feeling as a parent than leaving it on a sunny day. On a sunny day, you get to let your guard down a little and just live for a few hours. You almost forget the list of cant's that come with marfan syndrome on the sunny days. You know the ones- the same ones that would make a ride on the roller coasters off limits at the real Disney World if we ever made it.
At Marfan Disney World, there aren't rides, but there is a movie, an incredible, mesmerizing movie, a movie of each of our children's hearts, that I watch each year in nervous anticipation, waiting to see what the results of what this movie tells us are, and wishing I knew how to read the measurements taken myself. So far, the kids are more interested in watching whatever cartoon or other show they can talk the technician into putting on the big screen, but us adults in the room barely notice that show.
The wait after that show for the main attraction is the longest wait of the year for Giraffedaddy and I. We sit in a exam room, reading stories to our children, offering silent prayers to our God that it's a sunny visit.
And then she arrives. She wears a business outfit covered by a lab coat, her stethoscope draped around her neck, her smile radiant as she greets the kids and us, regardless of the type of news she is going to deliver. There is no princess dresses involved here, but she's such a better role model for my girl anyways, and sometimes she shares that coveted stethoscope with the kids. There are no song and dance shows, no special princess teas, and instead of wearing a princess dress Giraffegirl gets to don a child size hospital gown, but she loves it just the same. She checks over each of our kids, listens to their hearts, and then it's time for what we've all been waiting for: The Big Discussion. On a simple white notepad with a picture of a detailed human heart in the background she jots down the measurements and the z-scores for the two kids.
We've been blessed so far. On our worst year Giraffeboy's aorta grew about .3 cm and his z-score topped off at about 2.83. To an untrained eye, these numbers mean nothing, and 3 millimeters seems like a nominal measurement, But if you factor in that a normal adult aorta is less than 3 cm, and that the kids were at around 2 cm when we started these measurements, suddenly millimeters matter. And the most simple way to define a z-score is to just say it is a standard deviation measurement that lets us know how far the kids are away from what a "normal" aorta size is for their height and weight. Anything less than 2 is considered in the normal range. We covet a number less than 2.
This year was the most sunny year yet. Giraffeboy's aorta stayed the same, and for the first time since we started these trips to Marfan Disney World 7 years ago, his z-score was just under 2. Praise God! And Giraffegirl's aorta stayed basically stable too, and her z-score was down from 2.39 to 2.3 this year. So we have so much to be grateful for. It was an exceptional visit this year.
We talk with the doctor a few more minutes and then were headed back home, our yearly trip over. Instead of souvenirs we leave with prescriptions for the coming year, our main weapon in combating aorta growth before next year's visit. We spend the rest of the day together as a family, have a rare meal at a restaurant, and we laugh and love. It's been a good day.
So as these bills come, and as I write the check out of our HSA account to pay for this year's trip, I reflect that somewhere, someone else had a rainy trip today, someone else had no need for the trip because their child died from this syndrome, and still someone else struggles to figure out how to pay this bill each year. And I dream of a day when this visit, a necessary part of a person with marfan syndrome's yearly physical, is covered by insurance. And I say a prayer of thanks to God for this year's sunny day. Some day I hope there is enough money in our budget to pay for the trip to the real Disney World, but for now I'm grateful that the money is there to pay for this trip. For now, it's enough to enjoy the real Disney World through the eyes of my friends, and to reflect on how lucky my family really is.
So what is Marfan Disney World, you wonder? It's a place we visit for a day every February, the four of us trekking the 30 minute or so ride anxious for the days adventures. The whole time spent there is less than 4 hours, but the cost per child is about $750 dollars (this year). The money spent there wouldn't quite cover a week at the real Disney for us, but easily two years worth would.
Marfan Disney World isn't at all like the real theme park. You aren't guaranteed a fun time, and if it "rains" it's hard to remember the good parts of it. But if it's sunny, there isn't a better feeling as a parent than leaving it on a sunny day. On a sunny day, you get to let your guard down a little and just live for a few hours. You almost forget the list of cant's that come with marfan syndrome on the sunny days. You know the ones- the same ones that would make a ride on the roller coasters off limits at the real Disney World if we ever made it.
At Marfan Disney World, there aren't rides, but there is a movie, an incredible, mesmerizing movie, a movie of each of our children's hearts, that I watch each year in nervous anticipation, waiting to see what the results of what this movie tells us are, and wishing I knew how to read the measurements taken myself. So far, the kids are more interested in watching whatever cartoon or other show they can talk the technician into putting on the big screen, but us adults in the room barely notice that show.
The wait after that show for the main attraction is the longest wait of the year for Giraffedaddy and I. We sit in a exam room, reading stories to our children, offering silent prayers to our God that it's a sunny visit.
And then she arrives. She wears a business outfit covered by a lab coat, her stethoscope draped around her neck, her smile radiant as she greets the kids and us, regardless of the type of news she is going to deliver. There is no princess dresses involved here, but she's such a better role model for my girl anyways, and sometimes she shares that coveted stethoscope with the kids. There are no song and dance shows, no special princess teas, and instead of wearing a princess dress Giraffegirl gets to don a child size hospital gown, but she loves it just the same. She checks over each of our kids, listens to their hearts, and then it's time for what we've all been waiting for: The Big Discussion. On a simple white notepad with a picture of a detailed human heart in the background she jots down the measurements and the z-scores for the two kids.
We've been blessed so far. On our worst year Giraffeboy's aorta grew about .3 cm and his z-score topped off at about 2.83. To an untrained eye, these numbers mean nothing, and 3 millimeters seems like a nominal measurement, But if you factor in that a normal adult aorta is less than 3 cm, and that the kids were at around 2 cm when we started these measurements, suddenly millimeters matter. And the most simple way to define a z-score is to just say it is a standard deviation measurement that lets us know how far the kids are away from what a "normal" aorta size is for their height and weight. Anything less than 2 is considered in the normal range. We covet a number less than 2.
This year was the most sunny year yet. Giraffeboy's aorta stayed the same, and for the first time since we started these trips to Marfan Disney World 7 years ago, his z-score was just under 2. Praise God! And Giraffegirl's aorta stayed basically stable too, and her z-score was down from 2.39 to 2.3 this year. So we have so much to be grateful for. It was an exceptional visit this year.
We talk with the doctor a few more minutes and then were headed back home, our yearly trip over. Instead of souvenirs we leave with prescriptions for the coming year, our main weapon in combating aorta growth before next year's visit. We spend the rest of the day together as a family, have a rare meal at a restaurant, and we laugh and love. It's been a good day.
So as these bills come, and as I write the check out of our HSA account to pay for this year's trip, I reflect that somewhere, someone else had a rainy trip today, someone else had no need for the trip because their child died from this syndrome, and still someone else struggles to figure out how to pay this bill each year. And I dream of a day when this visit, a necessary part of a person with marfan syndrome's yearly physical, is covered by insurance. And I say a prayer of thanks to God for this year's sunny day. Some day I hope there is enough money in our budget to pay for the trip to the real Disney World, but for now I'm grateful that the money is there to pay for this trip. For now, it's enough to enjoy the real Disney World through the eyes of my friends, and to reflect on how lucky my family really is.
Wednesday, February 22, 2012
Two Year Anniversary
Two years ago today GiraffeDaddy had valve sparing aortic root replacement surgery on his ascending aorta. We are grateful to God everyday for that surgery's success, and for the relatively quick healing that followed. Although there are still times he doesn't have quite the stamina that he did pre-surgery, he is pretty much back to normal.
Instead of writing in detail about that day, I thought I would copy and paste the series of emails I sent out during our week at the hospital. They describe so much better what that week was really like.
Monday, February 22, 2010 4:24 PM
Instead of writing in detail about that day, I thought I would copy and paste the series of emails I sent out during our week at the hospital. They describe so much better what that week was really like.
Monday, February 22, 2010 1:07 PM
Thought I would send a quick email and let everyone know E is still in surgery. The actual surgery started about 11:30. We are anticipating they will be finished around 4:30 or so. Thanks so much everyone for your thoughts and prayers!
Monday, February 22, 2010 4:24 PM
Hey everyone. Just heard from the nurse coordinator and E is off the heart/lung machine and they are closing him up! Sounds as if everything went well and it was a success. I'll send an email later tonight after I've talked to the doctor and I've seen him, but he's doing great! Thanks so much for all your thoughts and prayers!
Which brings us to a prayer request....my Mom and I have been in the waiting room with another family who's loved one has Marfan Syndrome and is having his entire descending aorta grafted in today. He is only 33 and has a young child. Please pray that this surgery goes well for all of them! It is a much more severe surgery than Eric has just had. Thanks!
Tuesday, February 23, 2010 7:48 AM
Hey everyone-
Sorry I didn't email last night but it was a late night. Quick update. E is doing great! He had a little trouble waking from anesthetic, and so he didn't get the breathing tube out until about 5:40 this morning. I was here with him until about 1:30 this morning, when he sent me out and told me to go sleep. He is in good spirits but is definitely feeling some pain. He really likes his drug button! They will be getting him up into a chair sometime soon, and then he'll move to his permanent room for his hospital stay (he's in the ICU right now.)
As far as the other family. Thank you for praying for them! N, the guy, finished the main part of his surgery last night about 10:30, and it was so fun to see the celebration with his wife M and his parents and siblings! There is a long recovery road for him but the hard part is done!
Please conitinue praying for both these guys as they deal with the pain and recovery!
Thanks so much for all your well wishes and emails! They feel like great big hugs buoying me up during this LONG past day! (We got up yesterday at 4:45, and I am NOT that 20 year old college girl anymore! I don't do all-nighters!)
Tuesday, February 23, 2010 1:30 PM
Hey everyone-
Wanted to let you all know that E is now moved out of the ICU and into the cardiac care unit where he'll remain until they kick him out of here. He is in unit 5C, room 5688 in Mary Brigh Builing at St. Mary's Hospital. I'm not sure how to call him, but at this point he really just needs quiet time to heal anyways, and you all know he is not really a phone guy anyways. At this point, while he is in pain and still getting back on his feet and germs are still a concern we need to minimize visitors, but know that I am giving him all your messages and sharing with him how many people care and are concerned. If you are thinking about visiting, talk to me first and we'll see where he is at and how he's feeling. Just know we are both so thankful for everyone's prayers, thoughts and concerns. There is no way to reply to everyone's email but just know that I am so thankful for them and they have really helped to boost my spirits! I love you all.
Tuesday, February 23, 2010 9:37 PM
Hey everyone- Just a quick update before we try to get some sleep. E is doing well, although he is having some anxiety about the pain and how hard this recovery really is. He's also very worried about the kids having to go through this surgery in the future. He is in a lot of pain and he is also scared of what is to come in this recovery process. (let's be real- we are scared!) I have to admit this is way harder and worse than I thought it would be, but I am also really thankful that E is alive and doing well. I can't imagine going through this without all the knowledge we had ahead of time, as so many people who never knew they had Marfan Syndrome until they reach critical aorta dilation do, or without a faith in God that it will all turn out alright. I came back down tonight to stay with him (Thanks for the ride/ car delivery Pastor Pam and Marshall!), and I am probably not heading home for the next few days. Mostly, I just don't want him left here alone. But we are both doing good overall. It's been a rough couple days. Please keep the prayers for less pain and a quick recovery coming!
Wednesday, February 24, 2010 9:29 PM
Hey everyone-
Let me start this by acknowledging that maybe we should have gotten a caringbridge site when it was offered and given everyone a choice about whether to read these updates or not. We chose not to because we really felt those should be more for the families of people suffering though long term illness that would need long term updating ability. I figured I'd send out one quick email saying surgery went fine and he's good and that would be all. I didn't realize how hard the recovery process would really be (I know, so naive of me, but our friends who have had this surgery really made it sound quick before hand, or at least that's what E and I chose to hear, and though I know this is still really soon after surgery I don't think I really GOT it before hand.) At any rate, if any of you are sick of updates feel free to send me an email and I'll take you off the list with no hurt feelings. Or just delete this.
I was so frustrated with my email account before this started because it wouldn't let me make a list, and I had to individually get the emails onto that first email, but I'm also incredibly thankful since it made me add myself to the email and I'll now have all these emails I can print out as sort of a journal of this experience, and maybe it will help the kids in the future.
I am so thankful for a much better day for both of us. It does seem to get easier each day, and I've heard from many that day 3 and 4 post surgery are the worst so I'm prepared for tomorrow and looking forward to those easier days!
E's pain control was so much better today! He got his chest tubes out this afternoon, which was a very painful (but short!) experience, but they were right in saying the pain levels were reduced almost immediately. He's been up walking 3 times today (our goal was four, but the nurse came in and gave him a back rub right before his planned last one and so he just wanted to sleep then, and who can blame him). He's pushing himself farther each time, and he's been pretty steady and strong once he's on his feet. The getting up and down without his hands is the hard part. With his long lower legs he has to push up even further since his knees are above his waist, so this makes this even harder. But he's making great strides in mastering this. You would think they would have special furniture designed for tall people here since they specialize in aortic surgery for those affected with Marfan Syndrome here, but no such luck. I'm just thankful that E is only 6 feet or so, so that foot to knee length isn't longer.
Again, we are both very thankful for all the prayers and words of support! We love you all!
Thursday, February 25, 2010 10:48 PM
Hey everyone-
With any luck this will be our last update from the hospital. I'll send out at least one more when Eric goes home tomorrow, as a sort of end to this part of the healing process.
Today has been a day of celebration for us. E walked 5 times, sat up from the bed to standing twice, got to take a shower, survived on less pain meds (I'm starting to feel like a drug pusher as I encourage him to take some), lost another IV (leaving him with only one) and most importantly, passed stool tonight and was rewarded with actual food! So there have been large strides today and I am no longer scared about bringing him home, as much more of his physical care was done by me today then nurses (they still won't let me give drugs and have weird fascinations with his output).
There were some emotional highs today too. My Dad was wonderfully kind and drove the kids down today with my Mom so they could see Daddy, and they did great and boosted both mine and E's spirits. It was hard though to watch them leave, and I had a good cry after I watched my babies go. With any luck we'll all be together tomorrow. Then, our good friend T from our Marfan Group came, who had the same surgery about 2 years ago, and he and E were able to compare war stories. I saw the first real spontaneous smile from E since surgery, which was immensely joyful. Both visits were great for our spirits.
Life in the hospital strips away all dignity from the patients. I remember after having the kids thinking the entire world had now seen my parts, but it was nothing like the lack of privacy E has experienced this week. At least with child birth there is a baby to distract everyone in the end. And the nurses are great at trying to protect his modesty, but there are only so many things they can do with a gown that opens in the back and no undies. There is an intimacy here with E that I have never experienced before, and although I would have spared him the pain of this journey I appreciate the outcome of it. There is something beautiful in caring for the person you love's most basic needs. I have helped E do things this week I would never have thought I'd need to, and yet I would have done a million more things if it meant this same outcome. I helped him shower today, and as I gently washed his scar I thought how it represents one more victory in this war we fight against this disorder that affects our family. I hope he will someday look at that scar and not see it as something to hide, but rather something to celebrate, a badge of bravery in this step he took, experience that may one day help our own kids. This man I married showed me a whole new level of his bravery, endurance, character, and love, and I know I leave here more in love with him than ever before. This week has been sort of like one big date for us (not sure E would see it this way, but really he takes me on walks and I get hospital ice, what more could a girl want!), a constant opportunity to connect, to let down the guards we so often put up, and to just enjoy the quiet together. I don't think I shared this, but one of the first things E did as he woke up from sugery Monday was sign "I Love You" to me, and though my tired self took awhile to get the message, it represents what this whole week has done for both of us, reminding us to take that extra minute to say those words, to let each other know we appreciate the other, to remind us to lift each other up. In these years of young kids where we sometimes forget to put each other first, it's been a great experience for both of us. In a strange way I'll miss this hospital time.
Enough of my ramblings. Thanks again everyone for all your prayers this week and for all your great messages. We are incredibly lucky to have all of you in our lives!
And just to update today, N is doing fine but still in intensive care- much more serious surgery. He and his wife and M found out today that their son's aorta is also enlarged, meaning he probably also has Marfan Syndrome. Please pray for them as they grieve the loss of perfect health for their little boy at the same time trying to heal N.
Saturday, February 27, 2010 10:58 PM
Alright everyone-
I said I'd send out a final email when he came home so here it is. Sorry it didn't get out last night, but by the time the kids went to sleep last night it was all I could do to keep my eyes open long enough to crawl into bed! I just wanted to acknowledge I didn't mean to make everyone cry in the last email, but I wanted to share what this experience had given us, and I wanted it in here for the kids someday when I give them this email record. I hope they find the unconditional love that E and I share.
Friday morning at the hospital brought a final visit from Dr. Schlott (I think that's his name), the only constant in a stream of otherwise varying doctors on Dearani's (the surgeons) team. He was our daily wake up call, the around 6 am visit with a friendly smile and fabulous accent (think Prof Bomshad from college, Matt, and yes I was smitten with him!) The rest of the morning was filled with a visit from Dearani himself, real food for E for breakfast, a final echo to double check E's heart repair, and at least 3 lectures on recovery after leaving the hospital. We also took one last walk around the unit (without the walker this time!) to make sure E really felt ready. By about 2 pm we finished all the paperwork and lectures and it was down to get drugs and then on our way home. Although Pastor Pam brought us down lots of pillows to cushion E's ride (thanks!), macho man wanted nothing to do with them and by cannon falls it was back down to just the car seat. He swears the bumps didn't bother him, although his heart pillow did cushion the seat belt. The kids were ecstatic to see him, and after hugs he went up to bed and spent much of the night there. When I asked how those first set of steps went, he didn't remember taking them, so they obviously aren't a problem (big surprise, I didn't help him cause I had to pee after the long ride and he was too quick and impatient to wait the 10 seconds!). It was fabulous to come home to a clean house, and I was so thankful for my Mom for how hard she worked while watching the kids all week! E did come back down for dinner and then spent the rest of the night watching tv in our room.
My first hour home involved building a Lego helicopter (thanks Uncle Sean and Aunt Amber) with giraffeboy and making baby diapers out of sanitary pad wrappers for giraffegirl (you use what you got, I guess!) so it was back to reality quick for me.
I'd say today seemed like a normal day, and it pretty much was, but E was tired much of the day and spent a lot of it in our room. The kids were in and out visiting him, and he and giraffeboy spent tonight watching a Lego movie we got at the Library today (I left him home to run there and to Target for groceries, with the cell phone next to him and a promise I'd leave the cart and rush home if he needed anything!). The best part of being home is the change in E's moods, as he is so much happier now that we are home, much more back to his old self. I know this recovery process will take time, but I finally believe the people who said he be almost normal after a week. It's amazing how fast the human body recovers.
Life isn't fair. E didn't have this surgery due to any decisions he made in life, any choice of lifestyle he had. The genetic syndrome that made it necessary was passed on at birth, in the same circle of life in which we passed it to our kids. But this week has been a constant reminder to me of all I have to be thankful for. In the intensive care unit that E was in Monday night still lives a 10 month old baby who has undergone 3 heart surgeries already for deformities in her heart. Next door to him Monday night was a 3 year old who was recovering from her own heart surgery. N, the other Marfan surgery on Monday, left the ICU finally today, and his recovery will be so much longer than E's is. My Mom watched as a family was taken down from our waiting room that wasn't getting good news, and though I don't know their story I know it could have been us. The girl who comforted me Tuesday night during my waiting room cry, after E opened up about his fears for our kids, was there in the hospital watching both her parents die. Life in the hospital can quickly show you how bad it can get, but it also shows you the triumph of the human spirit, and the best of humanity as we put aside our own troubles to help another in their time of crisis. I have seen more compassion and kindness shown to strangers this week than I had in a long time, and it renews your belief in the goodness in the world we live in. I don't think I will take life for granted nearly as much as I have in the past. Each day is a gift, and I plan to spend it thankful for what I have, not sweating the small stuff, taking the time to appreciate the little things. Thank you for all of your support this week, for all the email that boosted my spirits, for all the offers to help with anything we needed. It's wonderful to feel so loved during all this time. When E is up to it I'll share them all with him. I know he will appreciate them as much as I do. God has truly blessed our lives with all of you and I am very thankful for each of you. I am glad the worst of this journey is over. Unless something major happens, I won't bore you with the details of our life now that we are home. And now I'm off to bed to listen to the beautiful sound of my husband breathing as he sleeps........
I just wanted to end this post today with a quick acknowledgement that while we celebrate giraffedaddy's health two years later today, we also mourn the loss of my cousin Christopher, who died this past week at the age of 15. Life is short. We never know when it is our time, so take the time today to tell your loved ones how you feel. We love you and will miss you Christopher!
Saturday, February 4, 2012
The Short Bus
My daughter rides the short bus. And she cries on the days when she doesn't get to, when I drive her to school or a friend picks her up. I cried the day we found out she was eligible to ride it. Although we had fought to get her help with speech and occupational therapy through our school district for over a year, when she finally qualified I was torn between happiness and worry. Happiness that she would get help, and that the strain of the $100+ monthly preschool bill would be gone. But also worry that labeling her as special ed, even at the preschool age, would affect her future years of schooling, possibly negatively. And I was torn about sending her on the bus. Would she be safe? Would she ride with bigger kids? Would she be made fun of for riding the "short bus"?
I grew up in an era where there was much less understanding of differences (I like to think the world has improved in this, that it has grown more open-minded as I have grown), where terms like political correctness weren't yet invented, or at least weren't common. I am ashamed to admit I was as guilty as everyone else of tossing around jokes with my friends about having to ride the short bus. I don't remember even having kids at my school who rode the short bus, they definitely weren't mainstreamed with us at that time, and I don't know how I first learned the term. But at least in Minnesota it was one of those terms growing up in the eighties you just knew.
Fast forward to now. As I said, my daughter rides the short bus. In the end having her ride the bus wasn't really an issue, and she was so excited to ride that how could I say no? My son goes to school with all types of children, and at least for a portion of everyday he has kids with many types of learning difficulties in his class. There are children at his school with down syndrome, autism, aspergers, chromosome deficiencies, ADHD, ADD, and these are just the ones I can name off the top of my head I know about. My children have friends at school with cerebral palsy and cystic fibrosis, and of course, they themselves have marfan syndrome. At 5 & 7 my children have been exposed to a larger variety of people's challenges than I had even into my teens, but my kids don't really see it or see it as anything to pay attention to. That is the beauty of children, their ability to accept differences in appearance and physical abilities without passing judgement or caring. It is through adults and society that they learn to pass judgement, and I can't think of a better way to help them be open minded than to have them in this diverse environment, to answer their curiosities with facts, and to allow it to be their normal.
My son rides the regular bus to school, and he has since the start of Kindergarten. It wasn't until the beginning of first grade that I learned he had the nickname booger boy the whole kindergarten year from a kid at the bus stop who saw him pick his nose. Although he has friends on the bus, just like back in the days we went to school there is a definite pecking order on the bus and you can see it even in elementary school at the bus stop. He's not afraid to take the bus, has been lucky enough to not have encountered much bullying so far, but I know through friends that it still happens too much. I see his bus driver everyday, but she's never made an effort to get to know us parents. It's just business on that big bus.
And that's where the short bus is magical. My daughter's bus driver introduced herself the first day last year when she picked her up. Every day she stops to chat a few seconds as giraffegirl makes her way off. We know about her grand kids down south, funny stories about her husband and family. When she saw us at the State Fair last summer she came running up to give giraffegirl a big hug. It was one of giraffegirl's favorite parts of the fair when we talked later at home. When it is still warm and the windows are down, as the bus drives by each day to turn around to drop her off at our driveway, I can hear them all singing and hear the little kids giggling. It's a beautiful place, that short bus she rides. And the best part- no pecking order. There aren't the cool kids and the dorks, the nerds and the jocks. The kids who ride her short bus this year all face a struggle, whether physical or learning disabilities, and they share that common bond. They stroll past the "regular" kids and their parents who make up half their preschool class, and they excitedly run to their bus with the teachers. And like my daughter before she was special ed, many of those "regular" kids wish they could ride the bus. Heck, I wish both my kids could ride that bus through the rest of their school years. And I can't help but think what a better world we would live in if we could all experience the magic of the short bus once in awhile.
I grew up in an era where there was much less understanding of differences (I like to think the world has improved in this, that it has grown more open-minded as I have grown), where terms like political correctness weren't yet invented, or at least weren't common. I am ashamed to admit I was as guilty as everyone else of tossing around jokes with my friends about having to ride the short bus. I don't remember even having kids at my school who rode the short bus, they definitely weren't mainstreamed with us at that time, and I don't know how I first learned the term. But at least in Minnesota it was one of those terms growing up in the eighties you just knew.
Fast forward to now. As I said, my daughter rides the short bus. In the end having her ride the bus wasn't really an issue, and she was so excited to ride that how could I say no? My son goes to school with all types of children, and at least for a portion of everyday he has kids with many types of learning difficulties in his class. There are children at his school with down syndrome, autism, aspergers, chromosome deficiencies, ADHD, ADD, and these are just the ones I can name off the top of my head I know about. My children have friends at school with cerebral palsy and cystic fibrosis, and of course, they themselves have marfan syndrome. At 5 & 7 my children have been exposed to a larger variety of people's challenges than I had even into my teens, but my kids don't really see it or see it as anything to pay attention to. That is the beauty of children, their ability to accept differences in appearance and physical abilities without passing judgement or caring. It is through adults and society that they learn to pass judgement, and I can't think of a better way to help them be open minded than to have them in this diverse environment, to answer their curiosities with facts, and to allow it to be their normal.
My son rides the regular bus to school, and he has since the start of Kindergarten. It wasn't until the beginning of first grade that I learned he had the nickname booger boy the whole kindergarten year from a kid at the bus stop who saw him pick his nose. Although he has friends on the bus, just like back in the days we went to school there is a definite pecking order on the bus and you can see it even in elementary school at the bus stop. He's not afraid to take the bus, has been lucky enough to not have encountered much bullying so far, but I know through friends that it still happens too much. I see his bus driver everyday, but she's never made an effort to get to know us parents. It's just business on that big bus.
And that's where the short bus is magical. My daughter's bus driver introduced herself the first day last year when she picked her up. Every day she stops to chat a few seconds as giraffegirl makes her way off. We know about her grand kids down south, funny stories about her husband and family. When she saw us at the State Fair last summer she came running up to give giraffegirl a big hug. It was one of giraffegirl's favorite parts of the fair when we talked later at home. When it is still warm and the windows are down, as the bus drives by each day to turn around to drop her off at our driveway, I can hear them all singing and hear the little kids giggling. It's a beautiful place, that short bus she rides. And the best part- no pecking order. There aren't the cool kids and the dorks, the nerds and the jocks. The kids who ride her short bus this year all face a struggle, whether physical or learning disabilities, and they share that common bond. They stroll past the "regular" kids and their parents who make up half their preschool class, and they excitedly run to their bus with the teachers. And like my daughter before she was special ed, many of those "regular" kids wish they could ride the bus. Heck, I wish both my kids could ride that bus through the rest of their school years. And I can't help but think what a better world we would live in if we could all experience the magic of the short bus once in awhile.
Saturday, January 28, 2012
Choices, Part 2
I watched the movie "In My Hands" for the first time about a year ago. The movie is a documentary about marfan syndrome, and it tells bits and pieces of a number of people and families' stories that are affected by marfan syndrome. The first time I watched this movie, I was with the other three officers of the Twin Cities Chapter of the National Marfan Foundation and we were all seeing it for the first time. Through most of the movie, the only sound we heard in the room were each other's tears. Although all of our stories are vastly different this movie was deeply personal for all of us, and touched us all in ways both the same and different. We all finished watching and felt a need to debrief. A counselor would have been handy at that moment. If you've never seen the movie, and have any interest in learning more about marfan syndrome or living with a medical condition I strongly suggest you see it.
Although I don't think there is a boring minute in this movie, there are two parts of this movie that really resonated with me, that haunted me long after the movie finished, and both of them in a sense revolve around the issue of guilt. One of them is when a mom of a marfan child talks about sometimes just wanting to walk away from her child, her husband, everything, just to escape having to deal with marfan syndrome. So here is a secret. I've thought that. I've been that mom. There are days when it seems overwhelming, when the kids are facing something new, when giraffedaddy has some new unexplainable symptom or pain, when I'm faced again with one of the many things we have to tell our kids "no" to in order to keep them safe, and I think wouldn't it be nice to just run away. But I don't, I wouldn't, I couldn't. But even admitting to the thought of it leaves me with a feeling of guilt that I technically could, a freedom none of those I love most have.
The second part of the movie that continued to bug me was a small statement made by a doctor describing the passing on of the marfan gene. I don't remember the exact line or wording, but the gist of the statement was that for most people with marfan syndrome they are able to make a choice to risk passing on the marfan gene, but for the families where spontaneous mutation occurs (25 % of marfan cases) they have no choice. Technically, there really isn't anything wrong with that statement, but emotionally my mind fought what it said. Did we make a choice to pass this on? Do all those affected by marfan syndrome make that choice? Would anyone faced with that "choice" even call it that? I still disagree with how it is worded. It isn't that simple. I didn't make a choice to pass this on to my kids, and neither did my husband. Yes, we knew the statistics, we knew the odds, we knew the 50/50 chance. But we made a much simpler choice. We made a choice to love whatever child God gave us. Before we ever became pregnant we talked about all the things that could go wrong with our child. We talked about the possibility of down syndrome, about whether or not the muscular dystrophy that his cousins had could happen to our child too. And we decided that no matter what, we would love our child exactly as they were. So yes, we made a choice, but it was a choice to love, not a choice of passing on health issues. I firmly stand by the fact that a person with marfan syndrome having a baby makes no more a choice to pass it on than a mother over forty could be said to choose to have a baby with down syndrome. Is the risk higher? Yes. But deep down you never really believe it will happen, you optimistically believe your baby will be healthy and live a long, happy, uncomplicated life. And so many of the best things in life involve risk, so why is this any different? The truth is, it isn't. Marfan syndrome, no marfan syndrome, my kids are who they are meant to be. And if it was a choice we made to pass it on, then I'd make the choice again in a heartbeat to have the joy these kids have brought to our lives. It far outweighs any challenges that come along with their diagnoses.
Although I don't think there is a boring minute in this movie, there are two parts of this movie that really resonated with me, that haunted me long after the movie finished, and both of them in a sense revolve around the issue of guilt. One of them is when a mom of a marfan child talks about sometimes just wanting to walk away from her child, her husband, everything, just to escape having to deal with marfan syndrome. So here is a secret. I've thought that. I've been that mom. There are days when it seems overwhelming, when the kids are facing something new, when giraffedaddy has some new unexplainable symptom or pain, when I'm faced again with one of the many things we have to tell our kids "no" to in order to keep them safe, and I think wouldn't it be nice to just run away. But I don't, I wouldn't, I couldn't. But even admitting to the thought of it leaves me with a feeling of guilt that I technically could, a freedom none of those I love most have.
The second part of the movie that continued to bug me was a small statement made by a doctor describing the passing on of the marfan gene. I don't remember the exact line or wording, but the gist of the statement was that for most people with marfan syndrome they are able to make a choice to risk passing on the marfan gene, but for the families where spontaneous mutation occurs (25 % of marfan cases) they have no choice. Technically, there really isn't anything wrong with that statement, but emotionally my mind fought what it said. Did we make a choice to pass this on? Do all those affected by marfan syndrome make that choice? Would anyone faced with that "choice" even call it that? I still disagree with how it is worded. It isn't that simple. I didn't make a choice to pass this on to my kids, and neither did my husband. Yes, we knew the statistics, we knew the odds, we knew the 50/50 chance. But we made a much simpler choice. We made a choice to love whatever child God gave us. Before we ever became pregnant we talked about all the things that could go wrong with our child. We talked about the possibility of down syndrome, about whether or not the muscular dystrophy that his cousins had could happen to our child too. And we decided that no matter what, we would love our child exactly as they were. So yes, we made a choice, but it was a choice to love, not a choice of passing on health issues. I firmly stand by the fact that a person with marfan syndrome having a baby makes no more a choice to pass it on than a mother over forty could be said to choose to have a baby with down syndrome. Is the risk higher? Yes. But deep down you never really believe it will happen, you optimistically believe your baby will be healthy and live a long, happy, uncomplicated life. And so many of the best things in life involve risk, so why is this any different? The truth is, it isn't. Marfan syndrome, no marfan syndrome, my kids are who they are meant to be. And if it was a choice we made to pass it on, then I'd make the choice again in a heartbeat to have the joy these kids have brought to our lives. It far outweighs any challenges that come along with their diagnoses.
Subscribe to:
Posts (Atom)