SUDEP Acknowledged....Finally!

It’s a rainy Saturday and Brad is yelling at the television again.  He is out to get that darn weatherman who is cursing his planned golf game tomorrow.  Not a good idea to watch the news with their 15 minute weather updates; just adds fuel to his burning fire.
 

Luckily for us, last weekend was much better;   Perfect weather for the National Epilepsy Walk on The Mall.  In years past, we’ve awakened to snow on the ground and had to dress in layers.  This year, the team was perky and warm, just like the day.




When Stephi finds Joshua's picture

Brad, Stephi and I went a bit early so we could walk around the vendor village to see what is out there in the world of epilepsy and seizures.

It was also the chance to see history in the making;  
Acknowledgement of  SUDEP.  

The Danny Did Organization worked with the National Epilepsy Foundation to create the Remembrance Wall;  The wall had a photo of sweet Josh and many others lost to SUDEP.  I knew it was gonna be there, but it still took my breath away to see my son on a national wall of remembrance.

Those are the moments when you have to remind yourself to just breathe!!

My sweet sweet boy!

It’s hard to believe this was our fourth walk.  We had planned to walk it WITH Josh, not in memory of.... Thankfully, it does help my heart to know Joshua's Smile has raised over $45,000 for epilepsy research, and to provide EMFIT monitors to several families in need.    It’s a journey I never suspected  when I accepted my mountain man’s proposal 23 years ago.  Still, I’m happy to make a difference, and feel that Josh would approve.



The difference between a helping hand and an outstretched palm is a twist of the wrist.  ~Laurence Leamer, King of the Night

HUGS!
Sherri

Walking for Josh - 2013 National Walk for Epilepsy

I’m running around the house frantically cleaning and watching the clock, to make sure I have time to take a shower, and run to the store for the wine and goodies we’ll need this weekend.  It’s the day before the National Walk for Epilepsy!  Our third time walking without Josh.....I’m trying not to focus on the sadness it brings, but rather concentrate on the good we’re doing for epilepsy awareness.

Once again our friends will show up at our side to hold our hands and walk with us.  Oh, how we need their strength and love during this time!!!  This includes my two sisters of different mothers who will race in from Ohio to walk with us, and also offer our annual toast in our angel glasses to one sweet and ornery boy who touched our lives so deeply.

It’s one of those rare times each year when we get to talk about Joshua’s antics and laugh til it hurts. It’s so nice to hear his name in normal conversation.  During these moments, it’s more like he’s grown and moved somewhere rather than taken from us by SUDEP.

The weather once again looks iffy. The first year we woke up to snow on the ground but just as the walk began, the clouds parted and we had a gorgeous day.  The second year was chilly again but we tore off clothing with each step as the sun once again showed.  This year fresh on the tail of a gorgeous week, a cold front with gusts and rain is gathering outside.  Sigh, if I had my druthers, I would wish for a gorgeous day of 70 ish with sunshine, but just like this whole journey, nothing has been as I would wish it to be.  It makes us great at “off the cuff” responses.

No matter what is thrown our way, we’ll bundle up, strip down, do whatever it takes to show our support to those who continue to live with epilepsy. 

So now I gotta go grab a shower, run to the store, finish cleaning so I can meet my friends at the door, act like I’ve done nothing all day. 

Our goal for today?  Avoid spilling our wine as we laugh til it hurts. 

Tomorrow?  We walk for Josh! 
 http://giving.epilepsyfoundation.org/site/TR/Walk/walk?pg=team&fr_id=1960&team_id=25250
 

Hugs!
Sherri

A Little Bit Stronger

Joshua's Smile 2012

I was awake at 5:15 in the morning and realized so were the girls and Brad....why?  It was time to get ready for our 2nd Walk for Epilepsy without Joshua!  The night before all of us had broken down at some point realizing how much we missed our sweet ornery one, as well as what the walk means to each of us.  It's a way to try to do something positive from negative.  I know how deeply the girls are affected when they are up at the crack of dawn without prompting or complaint!

The weather was chilly as we gathered for our team photo, but true to form, I looked up to the sky and in my best maternal voice said, "Joshua....we really could use your help and a little sunshine." True to form, as we reached the Start Line, the sun came our and shined on us.  We were actually peeling off our jackets moments later. Thank you my little angel!  :)

Ninja Brothers

Moments into the walk I couldn't help but smile when I saw the Miller Ninja Brothers.  Two brothers with epilepsy who are champions for Living with Epilepsy.  Nothing helps a cause more than adorable heroes!

Fact of the matter is I caught all of us smiling throughout the day realizing how fortunate we are to have such a strong and enduring support group of friendship and love.  Many bereaved feel those around them are ready to move on with their lives just as the shock of our loss is becoming real and we need them most, yet somehow my family and friends have been able to move on with their lives while maintaining their support for us.  Josh remains part of the normal conversation when we remember our kids growing up and oftentimes, those memories of Josh bring great bursts of laughter.

The Board - Me, Erika, Staci, Catherine, and Barb

My AU roommates Gloria and Marcia with some of our kids.

So, here I am walking the 5k when I couldn't help but notice the many purple shirts walking with us.  Purple shirts signify epileptics.  Those wearing purple were young, old, married, single, mothers, fathers, sons, daughters.  I caught myself envious many times wondering why my son wasn't one of those who would grow up, fall in love, get married and start a family while wearing the purple shirt. This is one of those two steps back for every three steps forward, yet I'm still one step up every time. Baby steps...getting a little bit stronger!

Our sweet ornery Joshua

Of course, it wouldn't be me if there wasn't a song playing in my head that matches where I am at any particular time and the song  I kept hearing yesterday was "A Little Bit Stronger" sung beautifully by Sara Evans.   This song resonated so true to me...here I am 15 months out and while I am still struggling like crazy to keep breathing and moving, I get a little bit stronger.

I will always wonder what could have been, but I realize what is here and some of the whys. Why are we here? Raising awareness of epilepsy and SUDEP, appreciating what we had, making the most of every moment, and giving hugs!

Hugs! Sherri

Life after SUDEP

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

Walking a fine line

It's March which means the National Walk for Epilepsy is just around the corner.  We had initially planned to walk it as a family of 5 but when we lost Josh, it became 4 of us + 130 friends and family in memory of our ornery sweet one.

Last year I was so numb through the entire thing and thankful for my dear friend Nancy who organized it and really made it happen.  This year I'm more "with it" and wondering how it will feel this year.  As with last year, several friends and family will trek to Virginia and "walk the walk" with us.  The group is sure to be smaller due to Spring Break opening on the same day, but it will be heartfelt just the same.

Walking for those who can't

I think I am in a better state of mind this year, but I don't think my heart realizes that yet.  It is still so hard to believe he's gone.  Just yesterday I started yelling at the dog and cat roughhousing and I uttered, Josh leave them alone.  15 months and he is still on the tip of my tongue.

A dear friend offering support as we begin the walk

The tears are not as frequent as I believe I am learning to live with our loss, but they are never far away and pop up in a milisecond

We plan to walk with a couple of other teams we have come to know through this entire chapter of epilepsy and it is for those who are still living with epilepsy that we continue to walk and seek a cure.  It's not always easy for people to decide what to fight for, but for me it is easy.  Fight the fight so no other family has to try to learn to live without their sweet ones in their arms.

Hugs,
Sherri

For our sweet ornery one!