I have a terrible flaw. Well, I have many flaws, but one of my worst is that I am constantly making comparisons and, far too often, I allow those comparisons to dominate my thinking. Lately, it has been about the progress Gabriel makes, in school, relationships, life. I see other kids with Down Syndrome making such huge gains, and pass him up in terms of academic skills, and social skills, and it breaks my heart. Then I torture myself near daily with self doubt about whether I am doing right by him. This was going to be a new week for us. I had everything planned to get us back on track after some very difficult months. So, of course, that plan went right out the window first thing this morning. Gabriel got up and went to make his usual breakfast of Life cereal and milk, only to discover we were out of milk. We were out of a lot of things, as it turned out. The important thing is that Gabriel is a boy for whom structure and routine is obsessively important. We simply could NOT get on with our day until he had his cereal and milk, so off to the grocery store we went.
It was good trip, he was extremely helpful in selecting fruits and vegetables and finding the things we need. We were chatting and productive. Then, when we went back to one aisle to grab something I had forgotten, I met a kind lady who, in the course of two minutes altered my entire way of thinking, and shifted me back to the track I should have been on. I think I was on it once, but I had lost my way.
The conversation was short. She said to me "Your daughter is beautiful." I smiled and said "Thank you. His name is Gabriel." She apologized for calling him a girl and I told her it was not a problem, since I was the one who chose to keep his hair long. Then she told me "My daughter was like your son," and as she got tears in her eyes, she added "I miss her so much." Her daughter had lived to the age of 44. We both fought back tears and we hugged. She told me how smart she thought Gabriel was, and how impressed she was with his clear speech. She said her daughter had always had trouble with speech. Her daughter, of course, was born in a different era. In all likelihood, her daughter was hampered more by lack of support and services, than she was by her extra chromosome. None of that really matters, though. All that matter is that she loved her daughter so much, and she didn't have her here anymore. Despite the improved health outcomes for people with Down Syndrome, it is possible, even likely, that I too, will outlive my son. So does it really matter is he is learning as quickly as the others? Does it matter if he faces more challenges? I don't think so anymore. As long as I make sure he knows every day how loved he is. (I am ashamed to admit I have not been good at that over the last couple of months). What matters is that I have him here, with me, NOW.
I wish I had asked her name. I owe her my thanks for reminding me to enjoy him, enjoy our life together, here and now. I needed to stop letting all my anxiety over what-may-be dictate so much of our daily life, and she finally gave me the kick I needed to get my head back on straight. So tomorrow, we have a dentist appointment and school. Whatever school work we get done will be good enough, because we can start again the next day. Together.
Showing posts with label Family. Show all posts
Showing posts with label Family. Show all posts
Monday, April 21, 2014
Monday, November 19, 2012
Angels on Stage
It is difficult to find time to blog on the weekends, so I think I will combine all my weekend gratitude into Monday's posts from now on. Today I want to share with every possible person I can reach, how an organization called Angels on Stage has changed my family.
Angels on Stage is a theatre troupe serving kids with special needs. The kids who perform with AoS run the gamut in terms of challenges. There are kids with neuromuscular disease, kids with Down Syndrome, kids on all areas of the Autism spectrum . . . you name it. I've met parents whose child was afraid to leave the house, but is now learning public speaking and becoming independent. Many of these kids would never have been given a role in a typical theater production. AoS not only gives them the opportunity, it provides the support they need to succeed, and more. They provide buddy coaches, each of whom is a gift to our kids, and the staff is such a unique group of people who have backgrounds in both theater and special education. They create an atmosphere in which all the kids, no matter the challenges, can thrive.
There is a song that they sing at the end of every practice, and also at the end of each show. It starts with just one Angel standing alone singing the words "If just one person believes in you. Deep enough and strong enough believes in you. Hard enough and long enough, it stands to reason that someone else will think 'If he can do it, maybe I can do it" making it two . . ." and then a second angel comes out and they sing the second refrain together . . . and then a third comes out to sing, then fourth. Then they all come out to finish the song "And when all those people believe in you . . . It stands to reason that you yourself will start to see what everybody sees in you. And maybe even you, can believe in you too." (And now I pause because I can't even type the words without crying. Good golly am I hot mess of sentimentality.) This is now our fourth season with AoS and I still cry every single time I hear them sing that. What makes that song so powerful is the fact that it is an absolute truth, and it is personified in this organization.
The people who put AoS together and who work so hard to support and teach and inspire our kids, do absolutely believe. While much of the world looks at kids with special needs through the lens of disability, these people look at our kids through a lens of possibility. They believe with their whole hearts that these kids can do amazing things, and their faith translates into their faith, and they make magic. The truly do.
My own experience with AoS began when Gabriel joined in their second season. It was such a joy to see him up there, dancing and singing as a jungle boy in Jungle Book! I cried through all the performances, not just for my Peanut, but for all those kids. They truly blew me away! They embraced the opportunity with such fervor and such joy. It is a miraculous thing to watch kids who, in every day interactions, may seem inhibited, insecure, (and to some, even incapable) get up on a stage in front of a packed theatre and declare "Here I am! Look what I can do!" The following season they put on an amazing production of Aladdin that, again, just left the audience in awe. That year was also the year my oldest son was dealing with bullying and his self esteem took a horrible beating. It was at our last practice of the season, when all the Angels get to take a turn and go on stage and shine, doing whatever they wanted to share, that the light bulb went off and I realized that I should have had Nick in this all along. I realized I had been doing Nick a great disservice. My view and understanding of his challenges with Asperger's was colored by his brother's Down Syndrome. I failed to see how difficult Asperger's truly can be because it wasn't the same glaringly obvious challenges that come with Down Syndrome. When I finally "got it" and realized how much he could benefit from the safety and acceptance that AoS provided, I asked him if he would like to join, and he was very hesitant. He was afraid and he didn't think he could get on a stage, so I told him "That's the best part of Angels. It is not about the production, it's about YOU. So if you join and come have fun at the practices and at the end of the season, when it is time to perform onstage, if you still don't want to, you don't have to." So he reluctantly agreed.
That next season the play was Alice in Wonderland, all three of my boys were Angels, and Nick asked for a role that had no lines. (He was a Card). We made it through the season and at Tech week (the week leading up to show weekend when we have dress rehearsals every night), as they closed out each rehearsal that week, they asked Nick if he would like to be one of the first 3 kids to step out and sing "Just One Person" and he declined every night. But he told the production manager he would try on show night. Friday night they had the first performance, and they all come out and performed their roles and left us all in tears. Then an Angel came out to start singing Just One Person. Then the second Angel came out. And then Nick. Holding a microphone and singing on stage in front of a packed theatre. I don't think there are words to describe what a huge victory that was for him. I'm quite sure no parent was crying as hard as I was. Now AoS is beginning its fifth season (and our fourth with them), and this year Nick auditioned for and got the speaking role he wanted, and he is showing more confidence and reclaiming his self esteem. Gabriel and Elijah are both also making enormous gains in their confidence and their abilities.
That is what AoS does. They take kids who so many see as "disabled" and from whom many don't expect much, and they believe in them with their whole hearts and they inspire these kids to believe in what they can do, and together, they give these kids wings to fly higher than anyone ever thought possible. I get to spend every Saturday morning surrounded by and working with all of these extraordinary people. I am so deeply grateful to all of them for what they have done for my boys, and I am so glad that I can now be a part of the AoS family by volunteering and helping out during practice. These people have become my family. They have helped to nurture my children, and they have nurtured me. They have made sure I never again feel alone on this journey of "special needs parenting" and for that I can never ever thank them sufficiently.
I am going to end this post with a request, which is not something I would normally do, but this is more than important to me. Please share this. Share it with everyone you know. If someone happens to read this who has the resources to help this organization grow by supporting us financially, or becoming a board member, or in any other way, please consider doing so. The staff and volunteers put their whole hearts into this, they are motivated by pure love for kids who have a rockier path, and they deserve all the support in the world. You can find out more at angelsonstage.org and if you will be in the San Jose area next March, please come see our kids perform. You won't be disappointed. Thank you.
And Thank YOU, Nina, Matt, De, Pam, Judy, Unc,V, Melanie, Sher, and everyone else at AoS. You all are the angels, and I thank God for you every day. You give my children a safe place to be their unique selves and you celebrate them for who they are. That is a gift beyond measure, and all I can say is thank you and I love you.
Angels on Stage is a theatre troupe serving kids with special needs. The kids who perform with AoS run the gamut in terms of challenges. There are kids with neuromuscular disease, kids with Down Syndrome, kids on all areas of the Autism spectrum . . . you name it. I've met parents whose child was afraid to leave the house, but is now learning public speaking and becoming independent. Many of these kids would never have been given a role in a typical theater production. AoS not only gives them the opportunity, it provides the support they need to succeed, and more. They provide buddy coaches, each of whom is a gift to our kids, and the staff is such a unique group of people who have backgrounds in both theater and special education. They create an atmosphere in which all the kids, no matter the challenges, can thrive.
There is a song that they sing at the end of every practice, and also at the end of each show. It starts with just one Angel standing alone singing the words "If just one person believes in you. Deep enough and strong enough believes in you. Hard enough and long enough, it stands to reason that someone else will think 'If he can do it, maybe I can do it" making it two . . ." and then a second angel comes out and they sing the second refrain together . . . and then a third comes out to sing, then fourth. Then they all come out to finish the song "And when all those people believe in you . . . It stands to reason that you yourself will start to see what everybody sees in you. And maybe even you, can believe in you too." (And now I pause because I can't even type the words without crying. Good golly am I hot mess of sentimentality.) This is now our fourth season with AoS and I still cry every single time I hear them sing that. What makes that song so powerful is the fact that it is an absolute truth, and it is personified in this organization.
The people who put AoS together and who work so hard to support and teach and inspire our kids, do absolutely believe. While much of the world looks at kids with special needs through the lens of disability, these people look at our kids through a lens of possibility. They believe with their whole hearts that these kids can do amazing things, and their faith translates into their faith, and they make magic. The truly do.
My own experience with AoS began when Gabriel joined in their second season. It was such a joy to see him up there, dancing and singing as a jungle boy in Jungle Book! I cried through all the performances, not just for my Peanut, but for all those kids. They truly blew me away! They embraced the opportunity with such fervor and such joy. It is a miraculous thing to watch kids who, in every day interactions, may seem inhibited, insecure, (and to some, even incapable) get up on a stage in front of a packed theatre and declare "Here I am! Look what I can do!" The following season they put on an amazing production of Aladdin that, again, just left the audience in awe. That year was also the year my oldest son was dealing with bullying and his self esteem took a horrible beating. It was at our last practice of the season, when all the Angels get to take a turn and go on stage and shine, doing whatever they wanted to share, that the light bulb went off and I realized that I should have had Nick in this all along. I realized I had been doing Nick a great disservice. My view and understanding of his challenges with Asperger's was colored by his brother's Down Syndrome. I failed to see how difficult Asperger's truly can be because it wasn't the same glaringly obvious challenges that come with Down Syndrome. When I finally "got it" and realized how much he could benefit from the safety and acceptance that AoS provided, I asked him if he would like to join, and he was very hesitant. He was afraid and he didn't think he could get on a stage, so I told him "That's the best part of Angels. It is not about the production, it's about YOU. So if you join and come have fun at the practices and at the end of the season, when it is time to perform onstage, if you still don't want to, you don't have to." So he reluctantly agreed.
That next season the play was Alice in Wonderland, all three of my boys were Angels, and Nick asked for a role that had no lines. (He was a Card). We made it through the season and at Tech week (the week leading up to show weekend when we have dress rehearsals every night), as they closed out each rehearsal that week, they asked Nick if he would like to be one of the first 3 kids to step out and sing "Just One Person" and he declined every night. But he told the production manager he would try on show night. Friday night they had the first performance, and they all come out and performed their roles and left us all in tears. Then an Angel came out to start singing Just One Person. Then the second Angel came out. And then Nick. Holding a microphone and singing on stage in front of a packed theatre. I don't think there are words to describe what a huge victory that was for him. I'm quite sure no parent was crying as hard as I was. Now AoS is beginning its fifth season (and our fourth with them), and this year Nick auditioned for and got the speaking role he wanted, and he is showing more confidence and reclaiming his self esteem. Gabriel and Elijah are both also making enormous gains in their confidence and their abilities.
That is what AoS does. They take kids who so many see as "disabled" and from whom many don't expect much, and they believe in them with their whole hearts and they inspire these kids to believe in what they can do, and together, they give these kids wings to fly higher than anyone ever thought possible. I get to spend every Saturday morning surrounded by and working with all of these extraordinary people. I am so deeply grateful to all of them for what they have done for my boys, and I am so glad that I can now be a part of the AoS family by volunteering and helping out during practice. These people have become my family. They have helped to nurture my children, and they have nurtured me. They have made sure I never again feel alone on this journey of "special needs parenting" and for that I can never ever thank them sufficiently.
I am going to end this post with a request, which is not something I would normally do, but this is more than important to me. Please share this. Share it with everyone you know. If someone happens to read this who has the resources to help this organization grow by supporting us financially, or becoming a board member, or in any other way, please consider doing so. The staff and volunteers put their whole hearts into this, they are motivated by pure love for kids who have a rockier path, and they deserve all the support in the world. You can find out more at angelsonstage.org and if you will be in the San Jose area next March, please come see our kids perform. You won't be disappointed. Thank you.
And Thank YOU, Nina, Matt, De, Pam, Judy, Unc,V, Melanie, Sher, and everyone else at AoS. You all are the angels, and I thank God for you every day. You give my children a safe place to be their unique selves and you celebrate them for who they are. That is a gift beyond measure, and all I can say is thank you and I love you.
Friday, November 2, 2012
Nicholas, My Pickle-ous
I am so thankful for my Pickle, Nicholas. I can't believe he is already twelve years old! Where did all those years go? I love that, at this pre-teen phase, when so many kids are no longer wanting to hold a parent's hand or express affection, that my sweet boy is still full of hugs and kisses. He still holds my hand as we walk, or when I drive, and he hugs and kisses all of us constantly.
I especially love the way he engages with his brothers. I was afraid that the five year gap between him and Elijah would mean limited commonalities. But Nick loves to play with them. He wrestles with them and plays Legos with them. When asked, he reads them stories, and he does it with flair, leaving the Gabe and EJ cracking up, no matter what the story.
I love his creative mind. He is constantly creating stories, some he turns into comic books, others he just tells you as he makes it up on the fly. He has such an active mind and I look forward to seeing where that takes him as he grows into adulthood.
One of the things I really admire about him is that he has remained a social boy who wants to engage people . Socially, he struggles, and has had to deal with rejection and bullying, but instead of letting that turn him into an introvert, he continues to put himself out there. He talks to complete strangers when we are on an elevator, or crowds we are with when standing in line. He will engage in play with kids he has just met in a park or a store or anywhere. I love that about him.
I love that he is learning how to conquer his fears. Two years ago, he was terrified to get on a stage. He now has a speaking role in a play. He is afraid of heights, but he just went on Splash Mountain for the first time and loved it. Still working up to the roller coaster, but he will get there.
Nicholas is such a gift, to me, and to his brothers. I am so grateful I got to be his mom. Love you Pickle, to the end of the universe!
I especially love the way he engages with his brothers. I was afraid that the five year gap between him and Elijah would mean limited commonalities. But Nick loves to play with them. He wrestles with them and plays Legos with them. When asked, he reads them stories, and he does it with flair, leaving the Gabe and EJ cracking up, no matter what the story.
I love his creative mind. He is constantly creating stories, some he turns into comic books, others he just tells you as he makes it up on the fly. He has such an active mind and I look forward to seeing where that takes him as he grows into adulthood.
One of the things I really admire about him is that he has remained a social boy who wants to engage people . Socially, he struggles, and has had to deal with rejection and bullying, but instead of letting that turn him into an introvert, he continues to put himself out there. He talks to complete strangers when we are on an elevator, or crowds we are with when standing in line. He will engage in play with kids he has just met in a park or a store or anywhere. I love that about him.
I love that he is learning how to conquer his fears. Two years ago, he was terrified to get on a stage. He now has a speaking role in a play. He is afraid of heights, but he just went on Splash Mountain for the first time and loved it. Still working up to the roller coaster, but he will get there.
Nicholas is such a gift, to me, and to his brothers. I am so grateful I got to be his mom. Love you Pickle, to the end of the universe!
Thursday, November 1, 2012
My Hunny
There are 61 days left in the year. My goal for the rest of the year is to share my blessings each day. I know a lot of people are doing the gratitude posts each day of November on Facebook, but I wanted to go into more depth than would be appropriate for a Facebook post, so I am blogging instead.
I am starting with my ROCK. My amazing and wonderful Robert. I really don't know how I got so lucky. He is such a stellar husband and father. I am so thankful for him in so many ways. He works very hard at his job. He is crazy smart, and is very well respected in his job. He goes to work and often works long hours to make sure we are cared for, and allows me to continue to stay home and educate Peanut. He sacrifices so much to do that. He misses the opportunities I have to go out and do fun thins with the Wild Things. It was his idea to take Pickle to Disneyland for his 12th birthday, and I thought he should be the one to take him, but he was unable to be away from work, so I got to go instead. He really needs, and deserves to be able to do those things too.
He "gets" me. We are different in certain ways, yet we fit together perfectly. While he prefers to be with just our family, I need time to be social with friends. He understands the importance of time spent with my friends and he encourages it.
When we are together, he is affectionate in big ways and small. Hugs, kisses, cuddles are part of my everyday life with him. He sets a perfect example for our boys of how to treat a woman; with kindness and respect and love.
He helps with the house, doing laundry and cleaning. He reminds me, when I worry or stress over my inability to keep up with the house, that I am not staying home to clean, but staying home to teach. I have a job in educating our son, and the housework is secondary to that, so he is forgiving and supportive when he comes home and the house is worse than when he left it.
I simply adore watching him engage with the boys. In addition to the requisite rough housing and other shenanigans that come with having boys, he also cuddles and kisses them daily. He encourages them when they are frustrated and pushes them when they don't try their best. His faith in them and in what they can achieve inspires me. It is said the divorce rate among couples who have children with special needs is pretty high. We have three kids with special needs and we are rock solid. That is because of him.
Thank you God, for this man I love with my heart and soul. Please watch over and protect him always.
I am starting with my ROCK. My amazing and wonderful Robert. I really don't know how I got so lucky. He is such a stellar husband and father. I am so thankful for him in so many ways. He works very hard at his job. He is crazy smart, and is very well respected in his job. He goes to work and often works long hours to make sure we are cared for, and allows me to continue to stay home and educate Peanut. He sacrifices so much to do that. He misses the opportunities I have to go out and do fun thins with the Wild Things. It was his idea to take Pickle to Disneyland for his 12th birthday, and I thought he should be the one to take him, but he was unable to be away from work, so I got to go instead. He really needs, and deserves to be able to do those things too.
He "gets" me. We are different in certain ways, yet we fit together perfectly. While he prefers to be with just our family, I need time to be social with friends. He understands the importance of time spent with my friends and he encourages it.
When we are together, he is affectionate in big ways and small. Hugs, kisses, cuddles are part of my everyday life with him. He sets a perfect example for our boys of how to treat a woman; with kindness and respect and love.
He helps with the house, doing laundry and cleaning. He reminds me, when I worry or stress over my inability to keep up with the house, that I am not staying home to clean, but staying home to teach. I have a job in educating our son, and the housework is secondary to that, so he is forgiving and supportive when he comes home and the house is worse than when he left it.
I simply adore watching him engage with the boys. In addition to the requisite rough housing and other shenanigans that come with having boys, he also cuddles and kisses them daily. He encourages them when they are frustrated and pushes them when they don't try their best. His faith in them and in what they can achieve inspires me. It is said the divorce rate among couples who have children with special needs is pretty high. We have three kids with special needs and we are rock solid. That is because of him.
Thank you God, for this man I love with my heart and soul. Please watch over and protect him always.
Friday, June 1, 2012
I Hate Making These Kinds of Decisions
Next Wednesday, both Elijah and Nick have their "graduation" ceremonies. Nick is graduating from 5th grade, EJ from Kindergarten. At the exact same time. I realize that some people consider a kindergarten graduation to be a bit over the top, but EJ really struggled this year and made some huge gains. I also know his teacher very well, and I know the amount of effort she has put into making it a very special day for both kids and parents. Fifth grade is more of a milestone, and the ceremony will be more formal, less sentimental, I assume. Like Elijah, Nicholas also overcame much this year. It was his first and only year at this school, so there aren't the years-long friendship bonds other kids have. He has grown so much and pushed himself in ways he never has before. This was a huge year for him, and I want to celebrate him.
Unfortunately, I can't be at both, so Robert and I will tag team, and video. I am struggling with who gets to go to which event, so I thought I would include the boys in the discussion. If I got lucky, one would have a preference for Mom and the other a preference for Dad, and I would therefore be absolved of the mom-guilt. Silly mom. When is it ever that easy? We explained the situation and asked for their thoughts. Elijah immediately squealed "I want Mommy!" and Nick responded to that with "Heeeeyyyyyyyy! I want Mom!" Here is where I have to give Elijah credit. That kids KNOWS his emotional manipulation and he wields it mercilessly. Without so much as a pause, he immediately began to sing to me a song I can only assume is on the program for next week's ceremony. "I think you're wonderful! As wonderful can be. I think you're wonderful!" Wait. It gets better. He paused, looked at me with that "how-can-you-possibly-say-no-to-me" smile and said "Why aren't you crying? You're supposed to cry." Nick's response? "Ok, FINE! You can have mom." He didn't say it graciously. Robert was right there for the whole conversation, by the way. Poor Daddy. I tried working the whole "you don't want to hurt Daddy's feelings, do you?" angle. Apparently, they have no problem with that. Must be a guy thing. Maybe if Robert let them see him cry . . .
So I guess it's settled. Kind of. I still feel the mom-guilt. So now the question is "can I trust Robert to video it? And who can I ask to take pictures for me since the only good camera will be with me? Now taking volunteers.
Unfortunately, I can't be at both, so Robert and I will tag team, and video. I am struggling with who gets to go to which event, so I thought I would include the boys in the discussion. If I got lucky, one would have a preference for Mom and the other a preference for Dad, and I would therefore be absolved of the mom-guilt. Silly mom. When is it ever that easy? We explained the situation and asked for their thoughts. Elijah immediately squealed "I want Mommy!" and Nick responded to that with "Heeeeyyyyyyyy! I want Mom!" Here is where I have to give Elijah credit. That kids KNOWS his emotional manipulation and he wields it mercilessly. Without so much as a pause, he immediately began to sing to me a song I can only assume is on the program for next week's ceremony. "I think you're wonderful! As wonderful can be. I think you're wonderful!" Wait. It gets better. He paused, looked at me with that "how-can-you-possibly-say-no-to-me" smile and said "Why aren't you crying? You're supposed to cry." Nick's response? "Ok, FINE! You can have mom." He didn't say it graciously. Robert was right there for the whole conversation, by the way. Poor Daddy. I tried working the whole "you don't want to hurt Daddy's feelings, do you?" angle. Apparently, they have no problem with that. Must be a guy thing. Maybe if Robert let them see him cry . . .
So I guess it's settled. Kind of. I still feel the mom-guilt. So now the question is "can I trust Robert to video it? And who can I ask to take pictures for me since the only good camera will be with me? Now taking volunteers.
Monday, April 2, 2012
Autism Awareness Day; Celebrate your child! Or not.
Maybe I am living in a bubble. Maybe I just choose myopia. Maybe I have enough conflict in other areas, that I choose to ignore conflict I don't want to see. I am really very sad and disappointed that, in reading through the myriad posts and links and articles today, I am finding so much conflict and anger and dissention in the Autism community. I hadn't realized there was such a groundswell of opposition to Autism Speaks or that the idea of "celebrating" our kids could be so offensive to some in the Autism community. I know that the roads we walk are not always the same. I know Autism is different from Down Syndrome in that regard, that there is so much greater variance among those born with it. I do know my son was born with it. Maybe I would feel differently if he were on the other end of the spectrum, and not high functioning. Maybe I would be angry, and believe with my whole heart that something was done to him. But that is not my path. My path is what my path is, and I celebrate my son because I love him exactly how he is. I hurt when he hurts and wish he didn't have to struggle, but doesn't every parent experience that to some degree? Does anyone's child, neurotypical or not, have an easy, challenge-free life?
My path includes Autism and Down Syndrome and medical fragility. Vaccines did not cause my son's condition, but what if it had? If I had been told you can vaccinate your son, but he will forever walk this path as a result? What if, knowing that I could save him, I risk the life of my other child? My middle son is a veteran of four different hospitals, his early years defined by medical challenges and immune deficiencies. So maybe I could have saved one son from challenges and heartbreak, but I would have put another son in grave danger at the same time. So, I admittedly have a very hard time empathizing with the more vociferous anti-vaccine voices out there. As alone as the special needs path can sometimes feel, the truth is that we are all interconnected, and a decision like the one to vaccine or not is not made in a vacuum, and it has real word consequences beyond our own bubbles.
Of course, I have a husband who grew up with all the same challenges as my oldest son, but no diagnosis, so when I hear that the rate of Autism is now 1 in 88, my mind doesn't automatically look for a villain in the form of needles. I think that makes sense, because our generation had so many kids go without a diagnosis. They have been there all along. We just didn't see them. Which is why I choose to celebrate, instead of being angry. Because so may people now can look at my boys, all three of my amazing, wonderfully non-typical, special needs boys, and SEE them for who they are. If I could take away one son's Autism, or the other's extra chromosomes, I might make their life easier, but I would lose the very special things I love about them, and they would not be richer for it. So I will celebrate their differences, and I will celebrate their struggles, and I will celebrate the very amazing victories bourne of those struggles. Our path may not be well paved and easy to follow, but it is adorned with amazing grace and beauty, and I wouldn't want to be anywhere else.
My path includes Autism and Down Syndrome and medical fragility. Vaccines did not cause my son's condition, but what if it had? If I had been told you can vaccinate your son, but he will forever walk this path as a result? What if, knowing that I could save him, I risk the life of my other child? My middle son is a veteran of four different hospitals, his early years defined by medical challenges and immune deficiencies. So maybe I could have saved one son from challenges and heartbreak, but I would have put another son in grave danger at the same time. So, I admittedly have a very hard time empathizing with the more vociferous anti-vaccine voices out there. As alone as the special needs path can sometimes feel, the truth is that we are all interconnected, and a decision like the one to vaccine or not is not made in a vacuum, and it has real word consequences beyond our own bubbles.
Of course, I have a husband who grew up with all the same challenges as my oldest son, but no diagnosis, so when I hear that the rate of Autism is now 1 in 88, my mind doesn't automatically look for a villain in the form of needles. I think that makes sense, because our generation had so many kids go without a diagnosis. They have been there all along. We just didn't see them. Which is why I choose to celebrate, instead of being angry. Because so may people now can look at my boys, all three of my amazing, wonderfully non-typical, special needs boys, and SEE them for who they are. If I could take away one son's Autism, or the other's extra chromosomes, I might make their life easier, but I would lose the very special things I love about them, and they would not be richer for it. So I will celebrate their differences, and I will celebrate their struggles, and I will celebrate the very amazing victories bourne of those struggles. Our path may not be well paved and easy to follow, but it is adorned with amazing grace and beauty, and I wouldn't want to be anywhere else.
Monday, February 20, 2012
The great thing about the Pity Party
If you read my last post, I had kind of a crappy day on Friday. I got over it, and we are all in a better place today, and it actually started to get better not long after I wrote that post. I got to spend the evening with some of my favorite moms, who let me know, it wasn't a table for one. Sometimes it may feel that way, but I was reminded that I am never ever alone. It's reassuring to find out there is nothing wrong with me for wanting to cry sometimes, and that there is nothing wrong with me for admitting that this journey is not always sunshine, rainbows and unicorns, and that others read my vents and are grateful to know they too, are not alone.
More importantly though, I reminded that I am so lucky and grateful to be travelling this road. If it weren't for the fact that my children have special needs, I wouldn't have crossed paths, and developed deep friendships with, some of the most wonderful, kind, loving and inspiring people. I simply cannot imagine my life without them. They bring such a depth of joy, and love to this life. So yeah, sometime it sucks, big time. But the upside is that most of the time, I am surrounded and supported by so much love. Not just for me, but for my children. That my boys are loved and cherished by my family and me unconditionally is a given. That they can be cherished and valued by others who truly see them is such a great gift.
Tonight I get to hang out with those same moms, only tonight we get to celebrate our amazing kids, and plan for them, and it will be a happy occasion. And in just a couple of weeks, we are going to sit in a theater, and share tears of pride as our very special kids get on a stage and shine a light that tells the world how special they truly are. No one will be happier or prouder of their kids than we will be that weekend. And that joy is only intensified by our recent moments of "this sucks." It is precisely because it is sometimes so very hard, because we can share that difficulty, that the intensity of joy during the moment of accomplishment are so much deeper.
One of my favorite movies is Parenthood, and one of my favorite scenes is when the Grandmother explains why she prefers the roller coaster to the carousel. "Up, down, up, down. Oh, what a ride! I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited and so thrilled all together! Some didn't like it. They went on the merry-go-round. Nothing. I like the roller coaster. You get more out of it."
I love the roller coaster too. Always have been a roller coaster kind of girl! Maybe there was a reason for that. "Pity Party" days just come with the ride, and my fellow roller coaster enthusiasts get that. I now they, like me, will gladly take the down days because the thrills and unadulterated JOY that come with it are completely worth the bad days. The best thing about the roller coaster is that it is more fun with friends, and I have been blessed with so many wonderful people with whom to share the ride. Today, we are flying high, but when the next drop comes, we will be ready, and we won't be riding alone.
More importantly though, I reminded that I am so lucky and grateful to be travelling this road. If it weren't for the fact that my children have special needs, I wouldn't have crossed paths, and developed deep friendships with, some of the most wonderful, kind, loving and inspiring people. I simply cannot imagine my life without them. They bring such a depth of joy, and love to this life. So yeah, sometime it sucks, big time. But the upside is that most of the time, I am surrounded and supported by so much love. Not just for me, but for my children. That my boys are loved and cherished by my family and me unconditionally is a given. That they can be cherished and valued by others who truly see them is such a great gift.
Tonight I get to hang out with those same moms, only tonight we get to celebrate our amazing kids, and plan for them, and it will be a happy occasion. And in just a couple of weeks, we are going to sit in a theater, and share tears of pride as our very special kids get on a stage and shine a light that tells the world how special they truly are. No one will be happier or prouder of their kids than we will be that weekend. And that joy is only intensified by our recent moments of "this sucks." It is precisely because it is sometimes so very hard, because we can share that difficulty, that the intensity of joy during the moment of accomplishment are so much deeper.
One of my favorite movies is Parenthood, and one of my favorite scenes is when the Grandmother explains why she prefers the roller coaster to the carousel. "Up, down, up, down. Oh, what a ride! I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited and so thrilled all together! Some didn't like it. They went on the merry-go-round. Nothing. I like the roller coaster. You get more out of it."
I love the roller coaster too. Always have been a roller coaster kind of girl! Maybe there was a reason for that. "Pity Party" days just come with the ride, and my fellow roller coaster enthusiasts get that. I now they, like me, will gladly take the down days because the thrills and unadulterated JOY that come with it are completely worth the bad days. The best thing about the roller coaster is that it is more fun with friends, and I have been blessed with so many wonderful people with whom to share the ride. Today, we are flying high, but when the next drop comes, we will be ready, and we won't be riding alone.
Friday, February 17, 2012
Pity Party, Table for One
Got the notification for Elijah's IEP meeting. I noticed, among the usual attendees, the speech therapist was added. Elijah originally qualified for SpEd because of speech, so it's not a shock to see her there, but he had not needed speech services this year. He had continued in SpEd because other learning issues had presented themselves. It seems now that speech is once again an issue. No big deal really. His speech is clear enough that anyone can understand him, but her name on the notice compelled me to have a quick conversation with his teacher after school today. That conversation only solidified something I've known for awhile, yet suddenly is more than I want to handle at the moment. Elijah isn't just a bit behind. His challenges aren't going to right themselves with just a bit more time. Something in his brain isn't wired the way a typical learner's brain is wired, and we can't just "re-wire' him.
I KNOW this is small potatoes. I KNOW how lucky I am that he is healthy, and active and I KNOW how blessed we are. I AM so grateful for him, and I DON'T want to change anything about him, or his brothers. Well, ok, I admit it would be nice if his sound system had a setting other than loud and "omigosh, the neighbors are going to think I'm abusing him" - but other than that, I don't want to change anything about any of my kids. I just wish that one of them didn't have to look forward to a path filled with challenges. I wish just one of my kids could have a typical learning experience. I wish things didn't have to be so much harder for them.
I know I need to get over myself, quit whining and put on my big girl panties and all that. Yada yada yada. I will. Later today, with a nice bottle of wine and my fellow Special Needs Moms. But for now, I just don't have the energy or the inclination to find the silver lining, or bask in the joy of life lessons, and pretend that life is always all rainbows and unicorns. Sometimes, being the mom of three kids with special needs just plain sucks. Today is one of those days. Tomorrow will be better. Tomorrow I get to spend the day with 100 other parents walking my same journey and I will find strength in our shared challenges. But for today, I just need to vent. And have a glass of wine.
I KNOW this is small potatoes. I KNOW how lucky I am that he is healthy, and active and I KNOW how blessed we are. I AM so grateful for him, and I DON'T want to change anything about him, or his brothers. Well, ok, I admit it would be nice if his sound system had a setting other than loud and "omigosh, the neighbors are going to think I'm abusing him" - but other than that, I don't want to change anything about any of my kids. I just wish that one of them didn't have to look forward to a path filled with challenges. I wish just one of my kids could have a typical learning experience. I wish things didn't have to be so much harder for them.
I know I need to get over myself, quit whining and put on my big girl panties and all that. Yada yada yada. I will. Later today, with a nice bottle of wine and my fellow Special Needs Moms. But for now, I just don't have the energy or the inclination to find the silver lining, or bask in the joy of life lessons, and pretend that life is always all rainbows and unicorns. Sometimes, being the mom of three kids with special needs just plain sucks. Today is one of those days. Tomorrow will be better. Tomorrow I get to spend the day with 100 other parents walking my same journey and I will find strength in our shared challenges. But for today, I just need to vent. And have a glass of wine.
Tuesday, January 10, 2012
Hey Ferb! I Know What We're Gonna Do Today!
I promised to come back with pics from the Phineas and Ferb Party, so here I am. I think it turned out rather well, for a theme that was incredibly hard to find party supplies for. I went to our local bakery, our local cake maker's supply store, Party City, Michael' and no one had any Phineas and Ferb themed supplies. I finally found the plates/napkins/table covers at Affordable Treasures, which is why I'm going there first from now on. I paired orange & blue streamers (Phineas) and purple & yellow (Ferb) and bought a bazillion ballons in the same colors for decorations. But I was still left without a plan for a cake. I was going to attempt to make a Perry the Platypus cake myself, but the day before, my friend Charlie offered to help. Charlie is an amazing cake artist. So the night before I baked a sheet cake, then the morning of the party, Charlie transformed it into a teal platypus.
Pretty cool, eh? I planned three activities for the kids, based on the show. The first was "The Shrink-inator" in honor of Dr. Doofenschmirtz, the bumbling evil scientist who is the nemesis of Agent P, AKA Perry the Platypus. I bought sheets of Shrinky Dink plastic, traced multiples of the main characters and cut them out in circle shapes. Then I left out permanent ink markers and let the kids color them and then we shrunk them in the oven.
I made sure to use a hole punch before I baked them, so the kids can make neckalces out of them, or use them as ornaments. The next game was "Where's Perry?" a question asked at the beginning of every show by Phineas. I printed out a couple different pictures of Perry the Platypus as a secret agent, cut them out, laminated them and put them on tongue depressor sticks. Then I taped a prize on the back of each. We "hid" them all over the back yard, some more hidden than others. They got to keep the Perry puppets and the prize and put them in their bag.
The last game was the most fun, at least from the perspective of a person viewing the chaos. That last game was "You're Busted!" in honor of Candace, the big sister who is always trying to bust her brothers. I inserted different small sticker sheets into balloons before inflating them, and I had these balloons kept aside until it was time for the game. I cleaned out the playroom of any decorative balloons, then dumped the game balloons all over the floor. The object was to pop the balloons by sitting on them. The key to the fun was underinflating the balloons. So the kids mostly bounced on the balloons, as they didn't pop right away, and some needed the extra weight of an adult foot.
Lastly, here is a picture of the birthday boy, opening presents and wearing his Phineas hat. He also got a Ferb hat, which is just as awesome. Both hats were made by my girlfriend Jen, who happens to be married to Charlie, the cake artist. Yeah, Mr. and Mrs. Martha Stewart. Only nicer. =)
If you are looking for unique and fun hats, she has started a business and you can find her on Facebook. Her page is called Pineapples N' Coconuts. She is also an amazing professional photographer, if anyone in the area is looking for one. You can find her page on Facebook as well, Jen Webster Photography. Check out the newborn photos. If I weren't so old, I'd have another baby just so I can have her do the baby pictures.
So another birthday party under my belt. On to Valentine's Day!
Monday, January 9, 2012
Heartbroken
Today is Elijah's birthday, and he is turning 6! I am so happy for my little boy who is growing up so fast. He is such a sweet little man. We had a little celebration for him at school, then I came home, where Gabriel and I baked a cake that is now in the oven. Presents are wrapped and we are going to have a great day.
But I have been fighting tears all morning. Actually got to cry on Hunny's shoulder a bit, but apparently not enough, because tears are flowing again as I write this. Why, one may ask, would a mom be sad on the occasion of her son's birthday? Well, yesterday at his birthday party, (an event for which I'll post pics later!), I was confronted with a reality I have always known was coming, and was nonetheless utterly unprepared for. While confirming an upcoming playdate, one of Elijah's friends rejected his brother. He very clearly expressed his desire that Gabe not be included. He didn't do it maliciously, he wasn't trying to be mean, and if Gabe had heard, he wouldn't have realized it. But I did. And it hurts. Enough that I'm crying the day after.
One of the hardest parts of choosing to homeschool, and sticking with it, is knowing that he doesn't get the daily bonding and friendship-building that comes with traditional school. Yeah, we have him involved in other activities so he gets socialization. But it's not the same as going to school everyday and seeing the same friends everyday. I guess I was secretly hoping that as Elijah started school, and his classmates were exposed to Gabriel, that, somehow, they would become Gabriel's friends, too. Maybe they will. But the sting of that first real rejection really stings. And I'm left questioning the wisdom of my choices. Is the academic advantages of homeschooling worth the cost of relationships? I'm not so sure today. I look into his beautiful face and wonder "What is the right thing to do?"
He just finished his writing assignment, and crawled onto my lap and is cuddling me as I type. God I love this boy! I guess he is telling me it's ok. Really, how can I look into this face and not know everything is going to be ok:
So, I'll leave this here and go take the cake out of the oven and celebrate my youngest, and save the tears for the next time.
And to those who would say I'm whining about my choices, all I can say "eff you." Sometimes having kids with special needs is extremely hard, and sometimes it hurts deeply. It's okay for me to say so. If you don't get that, then the problem is with you.
But I have been fighting tears all morning. Actually got to cry on Hunny's shoulder a bit, but apparently not enough, because tears are flowing again as I write this. Why, one may ask, would a mom be sad on the occasion of her son's birthday? Well, yesterday at his birthday party, (an event for which I'll post pics later!), I was confronted with a reality I have always known was coming, and was nonetheless utterly unprepared for. While confirming an upcoming playdate, one of Elijah's friends rejected his brother. He very clearly expressed his desire that Gabe not be included. He didn't do it maliciously, he wasn't trying to be mean, and if Gabe had heard, he wouldn't have realized it. But I did. And it hurts. Enough that I'm crying the day after.
One of the hardest parts of choosing to homeschool, and sticking with it, is knowing that he doesn't get the daily bonding and friendship-building that comes with traditional school. Yeah, we have him involved in other activities so he gets socialization. But it's not the same as going to school everyday and seeing the same friends everyday. I guess I was secretly hoping that as Elijah started school, and his classmates were exposed to Gabriel, that, somehow, they would become Gabriel's friends, too. Maybe they will. But the sting of that first real rejection really stings. And I'm left questioning the wisdom of my choices. Is the academic advantages of homeschooling worth the cost of relationships? I'm not so sure today. I look into his beautiful face and wonder "What is the right thing to do?"
He just finished his writing assignment, and crawled onto my lap and is cuddling me as I type. God I love this boy! I guess he is telling me it's ok. Really, how can I look into this face and not know everything is going to be ok:
So, I'll leave this here and go take the cake out of the oven and celebrate my youngest, and save the tears for the next time.
And to those who would say I'm whining about my choices, all I can say "eff you." Sometimes having kids with special needs is extremely hard, and sometimes it hurts deeply. It's okay for me to say so. If you don't get that, then the problem is with you.
Sunday, January 1, 2012
Happy 2012. Here Are My Resolutions. More or Less.
This year I resolve to:
Read more, watch less. Play more, worry less. Be more silly, less serious. Spend more time cuddling and less time online (no offense to my Facebook friends). Experiment more, fear less. Cry more happy tears, fewer sad ones. Have more patience and less anger. Paint more, scrapbook more, create more. Critique less (myself in particular). Write more, stress less. Hug and kiss more, yell less. Move more, sit less. Give more, take less. Love more.
Read more, watch less. Play more, worry less. Be more silly, less serious. Spend more time cuddling and less time online (no offense to my Facebook friends). Experiment more, fear less. Cry more happy tears, fewer sad ones. Have more patience and less anger. Paint more, scrapbook more, create more. Critique less (myself in particular). Write more, stress less. Hug and kiss more, yell less. Move more, sit less. Give more, take less. Love more.
Monday, June 13, 2011
Trying Something New
I had grand plans for this summer. One road trip to spend time with friends in the Pacific Northwest, and then "vacation at home" for the rest of the summer, exploring and enjoying the endless number of places here in the Bay Area that we never seem to have time for: Exploratorium, Monterey Aquarium, Giants baseball, Santa Cruz, the Tech, Lawrence Hall of Science, hiking and biking all of our beautiful county parks. It was going to be the best summer ever. Until next year.
But I am sidelined by a knee injury, for which the best treatment is time off. I am supposed to keep weight off my knee so that it can properly heal itself. Great. Well, staying completely off one's leg for any amount of time is, as we all know, a practical impossibility for anyone with kids. Then there are MY kids, one of whom was very likely the culprit behind said injury. "Nuff said.
So, I had to re-write the summer plans. I am going to enlist help so we can at least do some of the things I had planned, with help, but we are going to spend a fair number of days hanging at home, so I needed to come up with a game plan that did not include watching movies and playing video games. Well, last month I went to a scrapbooking retreat, which is open to all hobbies and crafts, and I was fortunate enough to sit across from a lovely woman named September, who was an artist. She creates these beautiful mixed media collages, and I thought "I want to do that!" So, off to Michael's I hobbled, and bought some art canvasses, some artists paints, dug out a bunch of my scrabooking papers and embellishments and sat down with the boys to engage in some art! The boys do seem to enjoy it, but they don't want to spend nearly the same amount of time creating their art as I do. I am really having fun with this, and I have made five collages! Poor kids may never get to leave the house now, because I'm loving this! Anyway, here are four of my first five. What do you think?
Tuesday, May 10, 2011
The Four Phases of Mother's Day
I hope all my dear mother friends had exactly the kind of day they wanted. If you wanted gifts, I hope you got what you hoped for. If you just wanted a day to do something special with your children, I hope your day went as planned. If you still are so fortunate, as I am, to have your mother, I hope you were able to connect with her in some fashion.
In the post Mother's Day conversations I've had, I've felt somewhat guilty for my personal need to spend Mother's Day NOT being mom, thinking there must be something faulty with me personally. I didn't always view Mother's Day this way. I used to cherish having a special day to just BE with my adorable children, enjoying them and celebrating each other. But they grew. And I realize now, that there are different phases we go through in terms of what Mother's Day means and how we celebrate.
The first phase is the fairy tale phase. You have a new baby, maybe a toddler or two, they are small, adorable, still take naps and you are still reveling in the magic of motherhood. It's still new and wonderful and all of the possibilities life has to offer lay open before you. Mother's Day is a day you want to celebrate how lucky you are to have these beautiful blessings and to show them off and say "Yes, they are MINE and I love them so!" It was a good phase. I do miss it.
Phase two - that would be my current place in time. The bloom is off the rose. The kids are not babies or toddlers, they are kids. Noisy, demanding, fighting with their siblings and telling me how unfair I am. While I still am so thankful they are mine, and I love them so much it hurts, I need a break from them every so often. Right now, so does my bum knee. They want to be with me all.the.time. I am grateful that they do want to be with me, but for Mother's Day I want the day off. When the morning's usual "Mooooooooom, my brother has wronged me in some way" whining began in earnest, I said "It's my day off, go tell your dad."
Phase three is coming soon, unfortunately, and I do hope it is a brief phase. That's the phase where they want nothing to do with mom most of the time and the mere existence of a day to celebrate mothers barely registers in their consciousness. I think purpose of phase three is so that phase four, by comparison, is something to be cherished.
Phase four is the bittersweet phase. At least I think it will be bittersweet. All grown, the kids appreciate you (especially if they have kids of their own!) and do make an effort, of their own accord, to let you know on Mother's Day. But you won't necessarily get to BE with them. Maybe they will live far away. Maybe one of them will be in the military. Or maybe they have kids of their own and Mother's Day is now to celebrate the mother of their children. I'll wish I could be with them and miss the days when I had them all to myself but if I do a halfway decent job with them now, I will hopefully still get a phone call.
So, what DID I do on Mother's Day? I celebrated with my mother. Oh, but first I must tell you about my breakfast. The night before as Nick was headed off to bed, I jokingly said "I look forward to my Mother's Day breakfast!" and I got the deer-in-the-headlights look in response. I reminded him the next morning was Mother's day, and he said "You do know I'm not allowed to use the stove or oven don't you?" Classic Nick. So the morning of Mother's day, I did indeed wake to a dutifully prepared breakfast. I found a plate, in the center of which was a triple-decker toast-jelly stack surrounded by a banana, an apple, grapes and strawberries. In front of the plate was a chocolate chip cookie, with a bite taken out of it, and next to the plate was a glass of milk with the telltale cookie crumbs floating on top. I guess waiting for me to wake up was more than his tummy could bear. Next to it all was a sign:"To Mom, From Nicholas. P.S. the cookie and milk are to wash it down."
Man I love that kid. I almost felt bad for leaving them after that.
For my part I took my mother out. We got makeovers, then went and had our portraits done, so now I have a current picture of me with my mom, something I haven't had since I was, well, MUCH younger. After we got our makeovers, I told my mom how beautiful she was, and asked her if she liked her makeup. She said "Yeah, but now you can see my wrinkle" as she pointed to her left eye. And being the ever supportive daughter that I am, I giggled. Wrinkle, singular? "Mom" I said, as lovingly as possible, "I hate to break it to you, but you're 64. Wrinkles come with the territory. But if it makes you feel any better I have them too. See? We match!"
Tuesday, April 19, 2011
Introducing My New Son
After dinner, Robert and I were in the bedroom chatting on the bed, when Elijah came in and ever-so-calmly held up his pinky finger and said "Gabriel bit me." Usually, when Gabriel bites his brother, we know right away. The ear-piercing screech which immediately melts into hysterical sobs are a dead giveaway. Of course, that is also Elijah's reaction when Gabe opens the car door before he can do it, so his matter-of-fact presentation of the offense was highly unusual, not to mention highly suspect. I responded to this report with "Are you sure he bit you? You're not screaming bloody murder." He immediately tilted back his head, contorted his face and began crying as though he had been grievously injured. Robert and I just started laughing. Not receiving the response he had hoped for, he took a deep breath to stop his tears and asked "Are you going to go get Gabey in trouble?" Um, no. We just laughed harder. And told him we are changing his name. So, I am pleased and amused to introduce to you my new son, Phakey T. McPhakerson. T stands for Tattles. Or maybe we should go with Phakey McTattlepants? Have to think on it.
Wednesday, March 30, 2011
See Me
SEE me.
I am creative.
I am funny.
I am affectionate.
I am curious.
I am capable.
I am smart.
I am artistic.
I am fun.
I am kind.
I am silly.
I am serious.
I am thoughtful.
I am aware.
SEE me.
I am a learner.
I am a dancer.
I am a gymnast.
I am a musician.
I am an athlete.
I am a story teller.
I am an artist.
I am a scientist.
I am a singer.
I am an actor.
I am a writer.
I am a boy.
I am a son.
I am a brother.
I am a friend.
SEE me.
I am not Down Syndrome.
I am not Autism.
I am not retarded.
I am not weird.
I am not limited.
I am not disabled.
I am not what you think.
See ME.
I am worthy.
I am full of wondrous possibilities.
I am amazing.
See. Me.
Wednesday, May 5, 2010
Out of the Darkness
I've wanted to post about this for several days, but was so emotionally drained from it all, I couldn't even get started. Now that I am finally sitting down to get it all out, I only hope I can do with the respect and eloquence it deserves.
Last weekend was a strange juxtaposition of emotions and events. It began Friday afternoon, when I donned my pink "Bosom Buddies" T-shirt and headed out to spend the night with my fellow "Bosom Buddies" at the Relay for Life. For those unfamiliar with it, the Relay for Life is a fundraising event put on by the American Cancer Society. Each team commits to having someone walking for 24 hours. We work in shifts, usually two at a time, but often more, walking for an hour. We have tents set up behind our booth where we do fundraising in a variety of ways. I learned about this team through a teacher I substitute for, who happens to be a breast cancer survivor, hence the team name.
We began our event with opening ceremonies, including survivors who shared their stories, which had us all thinking "Damn, I forgot to bring my kleenex" as we wiped away our tears. Then the walk began at 6pm, with the first lap being walked by the survivors while we handed them flowers and blew bubbles. It is both encouraging and humbling to see so many people who have fought, and won, this battle and very unnerving to see how many of those survivors were young people. It was a wonderful start to a truly amazing night. We stayed up talking, laughing, playing games and taking turns walking. Eventually, we even managed to sneak in some sleep.
I had planned to stay for the full 24 hours, but life had other plans, so Saturday morning I got up and left my team to go to a Memorial service for a wonderful man. This man had been a part of my life since I was a child. He was my youth pastor growing up and head pastor of the church we attended when the kids were small. He officiated our marriage, baptized all my children, spent time at my house when he came over and brought his trains to have a playdate with my son. He was also my dad's best friend, and he and my dad would take my son to multiple airshows every year. He was in every way a part of our family. The service was beautiful and emotional. More people showed up than the church could hold (over 700 people!) and everyone had a story to share about how this man touched them.
If I told you that my pastor died after a very long battle with illness, what would you think? You might assume cancer because it is so ubiquitous a disease. I'd bet you might also think he must have been a brave and strong man to have fought his disease for so long. But cancer is not what took our pastor away from us. Instead, he lost a battle with depression. It's very hard to reconcile the man we all know with the act that took his life. Knowing that he took his own life, do you still think him brave and strong? Until that day, I was like everyone else who thought "People who commit suicide are selfish - too selfish to care how they are going to hurt others." Isn't that what most of us think? Maybe that's true for some people. But not my pastor. There was not a selfish cell in his body. He spent his life caring for others, nurturing others, healing others. Even just days before he left us, he was tending to others, calling my dad and checking to see how he was handling an early retirement that was forced upon him by a plant closure. He was ALWAYS taking care of people, and guiding them to God.
So, I naturally spent the first several days after his death feeling just . . . lost. I was raised to believe that God is bigger than all our troubles; a belief, a FAITH, that was guided and nurtured by my pastor, and throughout my life that has always been true. Then WHY wasn't God bigger than my pastor's troubles? How could the man who helped guide my faith not be saved from the pain of depression by his own faith?
I spent the entire week after his death barely able to sleep because I could not turn off my mind. Then I went to the Relay for Life, and I listened to all of these wonderful, inspiring stories. Every survivor had a unique tale to tell, but they all had one very important common denominator. They had support. They had people - friends and family - who stood by them and took care of them and their children. Their support team read with them and stayed with them during treatment and made them laugh, and cried with them when they cried. As I listened to all of these wonderful beautiful stories of love, I looked around a saw a thousand people all gathered together, giving up a day to walk in support of those they love, and in support of people they will never know. It made me very very sad, because it answered all the questions I had been struggling with the week prior.
How many of you have participated in an event to raise awareness and support for some disease? I have walked for cancer, for MS, for Down Syndrome. There are events for AIDS and autism, leukemia, breast cancer, premature babies . . . but there is nothing for depression. No walks to raise awareness, no rallies to show support, no fundraisers to fund research . . . nothing. That needs to change. We need to stop looking at depression as a mere emotion and acknowledge it for what it is: a disease. We need to stop judging people who suffer from depression as weak, and support them for who they are: brave, scared people fighting a disease.
I will never again assume that anyone who has taken their own life has done so out of selfishness or weakness. My pastor was neither of those things. My pastor was strong and he was brave. He was brave enough to care for others while he suffered in silence. I hope anyone who comes across this will do the same. We need to bring depression out of the shadows and into the light. We need to acknowledge it, and dignify those who suffer from it by giving it the same deference and attention as other illnesses. Depression is real, depression hurts and depression kills. Let's shine the light on it, and maybe, if we do it together, we can save lives.
Sunday, February 7, 2010
Subscribe to:
Comments (Atom)