Four days until the National Walk for Epilepsy..... I can't believe it's the second time around without my Joshie! We are busy planning for those coming to "walk the walk" with us, including one of Brad's brothers who will travel overnight both ways just to show his love and support. Of course, my roomies will be there and I will have to do my best to make them behave. Remind me to thank God for my dear dorm sisters again tonight!
Four days away and I came home to find two interesting things arrived in the mail....
1. This year's "Joshua's Smile" green caps for our Team members. These caps are done every year by my sweet cousin in Arizona. The same cousin who as a teenager, let me tag along with her. As a teenage wannabe I was in complete awe of her and her life. Today, she and her high school sweetheart run a logo wear business and graciously help us with our team caps. Since tshirts are provided by the National Epilepsy Foundation sponsoring the event, these special caps are a great way to show our team spirit.
2. A packet of information from the organization called "Danny Did" Foundation. Danny Did, a thoughtful foundation formed in memory of sweet Danny Stanton, who was lost to SUDEP in 2008. Danny Did provides education and "seizure monitor gear" to those families living with epilepsy.
This same horrific death that took Joshua, SUDEP (sudden unexplained death of an epileptic) is a condition that takes 3-5,000 otherwise healthy epileptics every year. Boys between the ages of 12-15 with epilepsy are the largest percentage of this group to be lost to SUDEP. I am unable to cope and yet Danny Stanton's family not only is coping, but helping others.
I am in awe of families who are able to take their tragedy and make something good come from it. While I really feel that I want to advocate and educate, I suddenly feel very weak in the knees. How can these survivors carry on and not only live again, but speak of their story before crowds both small and large and maintain their composure? What an incredible amount of strength and discipline this must take to accomplish.
I am 15 months out and I am still trying to remember to turn off the stove, make sure I haven't locked the stealth kitty in the closet and that I have matching shoes on. A survey was recently sent out to parents of children lost to SUDEP. Based on the general non-controversial questions and their affect on my breathing and heartbeat I realized that I would not be able to withstand the emotional toll of attending this worthy conference, nor would I be able to listen to the other stories let alone share my own. And yet so many people are able to do such great things as a result of tragedy....
Does this mean my faith is not strong or I am not as good at prayer as I should be? I'm sure, and well maybe not....while that might be part of it, I think I am realizing that grief is incredibly difficult and surviving grief is a major emotional life changer that takes both time and effort to survive. Surviving grief beyond breathing in and out takes action even when you don't want to do it. When your body wills you not to leave your bed.
So what's a girl to do?
In four days I will walk with arms of those I love wrapped around me. I will continue to answer questions of children and adults about my son, epilepsy and SUDEP. I will offer hugs to the group planning a 5K in November to remember Josh and raise money to purchase monitor systems for those in need. I will take the step that lies in front of me and try not to psyche myself out, and in twelve months I will look back at where I was a year before and realize somehow ever so subtly, I have made it a little further until one day I am able to make a difference in the memory of my sweet and ornery one!
Hugs,
Sherri
Four days away and I came home to find two interesting things arrived in the mail....
1. This year's "Joshua's Smile" green caps for our Team members. These caps are done every year by my sweet cousin in Arizona. The same cousin who as a teenager, let me tag along with her. As a teenage wannabe I was in complete awe of her and her life. Today, she and her high school sweetheart run a logo wear business and graciously help us with our team caps. Since tshirts are provided by the National Epilepsy Foundation sponsoring the event, these special caps are a great way to show our team spirit.
2. A packet of information from the organization called "Danny Did" Foundation. Danny Did, a thoughtful foundation formed in memory of sweet Danny Stanton, who was lost to SUDEP in 2008. Danny Did provides education and "seizure monitor gear" to those families living with epilepsy.
This same horrific death that took Joshua, SUDEP (sudden unexplained death of an epileptic) is a condition that takes 3-5,000 otherwise healthy epileptics every year. Boys between the ages of 12-15 with epilepsy are the largest percentage of this group to be lost to SUDEP. I am unable to cope and yet Danny Stanton's family not only is coping, but helping others.
I am in awe of families who are able to take their tragedy and make something good come from it. While I really feel that I want to advocate and educate, I suddenly feel very weak in the knees. How can these survivors carry on and not only live again, but speak of their story before crowds both small and large and maintain their composure? What an incredible amount of strength and discipline this must take to accomplish.
I am 15 months out and I am still trying to remember to turn off the stove, make sure I haven't locked the stealth kitty in the closet and that I have matching shoes on. A survey was recently sent out to parents of children lost to SUDEP. Based on the general non-controversial questions and their affect on my breathing and heartbeat I realized that I would not be able to withstand the emotional toll of attending this worthy conference, nor would I be able to listen to the other stories let alone share my own. And yet so many people are able to do such great things as a result of tragedy....
Does this mean my faith is not strong or I am not as good at prayer as I should be? I'm sure, and well maybe not....while that might be part of it, I think I am realizing that grief is incredibly difficult and surviving grief is a major emotional life changer that takes both time and effort to survive. Surviving grief beyond breathing in and out takes action even when you don't want to do it. When your body wills you not to leave your bed.
So what's a girl to do?
In four days I will walk with arms of those I love wrapped around me. I will continue to answer questions of children and adults about my son, epilepsy and SUDEP. I will offer hugs to the group planning a 5K in November to remember Josh and raise money to purchase monitor systems for those in need. I will take the step that lies in front of me and try not to psyche myself out, and in twelve months I will look back at where I was a year before and realize somehow ever so subtly, I have made it a little further until one day I am able to make a difference in the memory of my sweet and ornery one!
Hugs,
Sherri
Sheri, my hugs are with you. Andy
ReplyDeletehi sheri, i have stumbled upon your blog whilst searching for a tv show i once saw about sudep. In 2000 i lost my brother who had epilepsy. His death certificate states asphixiation (sorry for spelling) but atthe time i wasnt even aware of sudep so couldnt ask any questions regarding his cause of death. 11 years on, several counsellors, anti-depressants, and phsycologists and i finally feel what i consider normal. It took seven years before i could say his name out loud without a tear or choking up.
ReplyDeletePlease remember that grief is a personal thing, each person copes differently and you should never compare yourself with others. some people find comfort in sharing and talking about it, others dont. I offer you hope that the pain gets easier to manage, the memories never fade but life begins to feel joyous again.
Tracy, thank you so much for sharing your story. I often look at those ahead in this journey to see when those smiles return. I am so sorry for your loss!
DeleteThanks so much Andy!!
ReplyDeleteMy 12yr old has epilepsy and I stumbled upon your blog. I am so sorry for your loss. My heart is warmed with how you have kept his memory alive. SUDEP scares the begesus outta me, but some how I cant help but research it. This never gets easier
ReplyDeleteMy 12yr old has epilepsy and I stumbled upon your blog. I am so sorry for your loss. My heart is warmed with how you have kept his memory alive. SUDEP scares the begesus outta me, but some how I cant help but research it. This never gets easier
ReplyDeleteMB Thanks so much for your kind words. I'm so glad you are trying to learn everything you can about epilepsy and SUDEP. I wish I had known what you know now. I've shared my thoughts in a blog after hearing from so many living with epilepsy. Hugs!
DeleteI lost my son who was 16 from sudep-he died january 9th of 2013. Grief is a lonely thing to go through. No one told me my beautiful boy could died that way.
ReplyDeleteOh Peggy, I am so sorry for your loss! You are spot on about grief..no one can do it for you and there are so many dark moments in those "early days" and beyond. Noone told us about SUDEP either and I think it's just wrong. Something has to change!!! Sending you Hugs!
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