Showing Grace When You Just Wanna Spit!

I came home from work this week to find Brad down right pissed off!  I was hoping it wasn’t aimed at me, when he pointed towards a letter on the counter.

It didn’t take long to figure out the source of his anger....There was a letter addressed to Joshua Newman from his former Neurologist announcing the doctor’s move to another practice.

The gist of the letter stated that if you wished to continue seeing him, his new contact information was included.

Heart stab with salt crusted knife!!!!!  My body went numb!

All that hard work was gone in an instant!  Just when I was getting to that point in healing where I was starting to forgive myself for the  “What Ifs,”  the things I wish I had done differently ( in my mind) that could have saved Josh, this stupid letter arrives.

One of the things  I listed in an earlier blog, http://thenewmans.blogspot.com/2012/04/sudep-what-i-wish-i-had-done.html "What I wish I had done differently" , alluded to the challenges of communication and disorganization with the doctor’s office.   We were only with this doctor for four months when Josh died.  During that time we struggled  with busy phones, scheduling challenges, etc.  which had led us to make some decisions I regret.  We knew this doctor’s reputation was great and we had great hope, but we were also looking around for other options. 

Fast forward 4 years  and we receive this letter.  I mean, seriously, how hard is it to update records?  Sweet Ornery  Boy  Deceased! 

How do you respond to such a thing?  I've learned my first thoughts are never the way to go, so I slept on it, and then responded.

Dear Dr. 

 
We received the announcement of your practice change this week.  You can imagine our surprise since our son Joshua, died from seizure in 2010.

It was really hard to receive this announcement as it meant our son's records were not updated to show his death in your office.

 I know he will always be in your heart, as you shared with us in the early weeks following his death, but we need his records to be updated and ensure we don't receive any future notifications like this.  It's just too hard.

We have walked the National Walk for Epilepsy every year since 2011....you should come. It's an amazing event and advocate for seizure awareness.

 

Best of luck with your new practice.

 

Regards,

 

In his response he apologized, blaming the error on the new group's administrators and he would try  to make sure, this never happens again.

It didn't give me great comfort nor did I feel confident that it wouldn't happen again.   It just reminded me once again, that no matter how much time goes on, my family's pain lies just beneath the surface and can show itself in full force in a second.  We need to prepare ourselves as much as we can.

I can't believe I did this, but I posted the incident on Facebook.  The response was swift, including offers to kick the doctor in the shins, offers to call his office (so sweet)  to make them aware and get the  issue fixed.  I so appreciated the love and support which helped me rediscover my grace, and helped me start to "get over it".

Four days later I was commissioned as a Congregational Care Minister to take care of those who need love and support during times of trial.  My emphasis will be holding the hands of the grieving.
Surrounded by friends, my name was called, and I knelled before the Minister and was anointed in Christ to serve others.  It felt like I had come full circle emotionally in a matter of days. 

It’s not a plan I would have chosen for myself, to be the mother of any angel, and I am obviously forever broken and vulnerable, but God’s grace and Love  was once again revealed and assures me that He will carry me even during tough moments.

What gives me the most hope every day is God's grace; knowing that his grace is going to give me the strength for whatever I face, knowing that nothing is a surprise to God.

Rick Warren

HUGS!
Sherri

Happy Mother’s Day – It’s complicated

If you want me, I’ll be building a stone wall around my butterfly garden.  I’m really pretty proud of it; I’m building it myself!  That counts as exercise, right?  I know it's Mother’s Day and I‘m supposed to be pampered by my kids.…whatever!

My rock wall...in the works!

Ever since Josh died, I choose to spend this holiday close to home, usually piddling around my flower beds, and that’s ok.  I make no apologies for this. 
What will we do for lunch since I’m definitely not cooking?  TAKEOUT!  When Brad asked what we were doing for lunch?  Stephi giggled when she told him she promised to go pick up lunch for me. 



Phil Vassar singing "Carlene"

Yep, I have two wonderful daughters I love to hang out with, and we can get pretty silly together.  Just last week, Stephi and I flew out to be with Britt in Oklahoma.  We did some shoppin, lots of eating, and took a road trip to see my fave country singer Phil Vassar, in a concert in the middle of a field in rural Oklahoma. 

The best part came when the girls got to meet Phil;  It was true love for them!  Phil's music has brought so much joy to our lives, and now they know he’s a great guy too.  Sitting before the concert laughing with the girls, making new friends, and then jammin' to songs full of great memories, are my joys of motherhood.

Britt & Stephi meeting Phil

 



I cherish my girls and love them like crazy. They know that, and as sisters who lost their brother, they totally “get me”.  We just talked about it in Oklahoma, and they are cool with my Mother's Day choices.   They see me smiling and laughing with them when we're together, and that’s all they care about.



This is one of my new friends.  What a cutie!!!

 

 

Oh how I love making new memories with them!  I wish Josh was there, and he’s not.  At times, it makes me sad; at times it brings me to my knees.  I am so blessed to have loved someone so dearly that I still miss him like crazy 3 ½ years after his death.

So please make those reservations, fight the crowds for a great meal if you want, send flowers to your mom, and cherish them.  I will take mine at home and work on my wall….and probably get dragged out to the golf range because did I tell you?  I just started golf lessons.  More on that next time.

Wishing you a Heartfelt Happy Mother’s Day!

Hugs,

Sherri

An Awakening - Season of Love

Five hundred twenty-five thousand six hundred minutes (1 Year).  15 years ago my mom, my sister-in-law and I went to see the musical "RENT" for our  NYC girl’s  Broadway weekend.   We really didn’t know what we were in for.....  The show was raw, it was rough and absolutely mesmerizing.  It was about a subject the three of us really didn’t know much about.  AIDS!  A few years earlier when I researched AIDS as a statehouse intern  I remember everyone was really scared because no one survived it for long, and no one understood how it was spread. Was it really super contagious and could you catch it like a cold?

Those with AIDS suffered from embarrassment, isolation and lack of touch until advocates started talking, and the medical community began to earnestly search for a cure.  It was an awakening!  It took time, but almost three decades later,  there are meds that help men, women, and children who are HIV positive lead healthy, energetic lives and what's also really cool?  We know it’s ok to touch/hug them without fear of "catching it".



My sweet boy (1 year old)  hangin' with me at the zoo.

In 2006, our family faced our own unknown when our youngest child, Josh, was diagnosed with epilepsy.  We really didn’t know much about it.  What was it?  Was it deadly? Would he outgrow it?  How would people react?  We knew the public was afraid of epilepsy and thought people with epilepsy fell to the ground and flailed  like a fish on land.  I went into research mode and read everything I could find. 

Joshua’s partial frontal lobe epilepsy caused gelastic seizures.  He would suddenly " switch off"  for about 10 seconds, and then he would snap back on with a little giggle.  He was very concerned about what his friends would think but thankfully, his classmates watched over him and stood by him during a seizure to make sure he didn’t fall, or get hurt.  If only more people reacted in a more caring manner, maybe those living with Epilepsy wouldn't try to hide their battle.

At this time, there are limited treatment options;  Epilepsy is neurological and there is no "cookie cutter" treatment.   It takes weeks to get the right medicine dosage, and if a medicine doesn't work, or there are terrible side effects like the ones Josh experienced the first time around, it takes several weeks to wean off and wean on. When one med doesn't work they will often try layering meds.  It is a long journey.   

A friend recently shared their journey

Fact: Thirty to forty percent of people with epilepsy are severely affected and continue to have seizures despite treatment. Our son tried 20+ meds as monotherapy, & polytherapy, supplements, lifestyle adjustments, chiropractic adjustments, dietary treatments, cranial sacral therapy, vagus nerve stimulator (VNS), and acupuncture...and he continues to have seizures. Some things have offered a little benefit, others have offered no improvement and/or horrific side effects. Our son is not a brain surgery candidate. Our next treatment will be Realm Oil from Realm of Caring.  realmofcaringfoundation.org/

We were just beginning to look at our long term options when Josh died.  Initially, we were told Josh would likely outgrow it, but three years later it was looking less likely, so we began  talking about options.  Josh told our neighbor he was going to have surgery to take out part of his brain and he was going to put it in a jar on the mantle. Hmmmmm, don’t think it would add to the mantle decorum, but the fact that we was so willing to remove part of his brain showed me how much he hated epilepsy. Given the uneven treatment we received during Joshua’s testing, initial diagnosis, side effects and ever changing treatment, I don’t blame him. 


Family lunch outing - 2008

I would have done whatever it took to help my son even if it meant looking at alternative therapies.  One therapy that is grabbing headlines is the promise of a specially bred Cannibis that is free of hallucinogens while maintaining (THC) relaxation qualities.  Early results are quite positive.  It may help give some of those living with epilepsy a chance to get their lives back.  HOPE!

Helplessness:  In the last two weeks two friends have endured watching their children suffer a series of seizures .  One child was seizure-free for three years, the other has been undergoing extensive testing to try to pinpoint the causes of his seizures and get them under control.  Both families feel incredibly helpless…sigh…oh, I know how they feel.

For the last 7 years, my family has been living with epilepsy.  Three years ago it took a tragic turn for the worst, and I know those around us are watching and learning.   I hope we are educating them, letting them know that people with epilepsy are not to be feared, but loved and encouraged. 
 

November is National Seizure Month.  It’s a time to bring awareness to the dangers of seizure and need for public education and government research.  It’s also the month of Joshua’s death from SUDEP.  On November 30^th we will remember him in the 2^nd Annual Joshua Newman 5K Run/Walk for Epilepsy and SUDEP Awareness.  It’s something small, but some of the biggest changes started with one voice.

 
If you’re in the Washington DC area, please come join us.  Click here to register:  http://www.events.org/newman5k/cpage.aspx?e=64967


We can do no great things, only small things with great love.  ~Mother Teresa

HUGS!
Sherri

 

 

 

 

Mama's Magic Bag

We are in Tennessee for a quick visit with the Newmans…Knoxville Chapter, before heading west to take Britt back to college.  It’s been nice catching up on the lives of all the nieces and nephews the last couple of days.  They are all at such interesting chapters in their lives and I enjoy their exciting chatter.  At the same time my heart feels heavy.  This is the year Joshua’s cousins start high school, the cousins born the same year he was born, which means this is the year that Josh should start too.  My boy should be a freshman in high school in two weeks.  My boy should have his driver's permit in 4 months.

To distract myself, I notice that something pretty normal keeps happening.  Someone keeps asking “do you have.....?” and I keep opening up my purse to pull out the needed item.   There was the Tylenol for a toothache, lotion to stop the itch of a bug bite, and a place for Brad to throw trip receipts.  Last week at the bridal shower for my nephew, the pad of paper and pen came out of my magical bag to record all the lovely shower gifts.

I just take my purse for granted, yet where would I be without my license, debit card, phone and lipstick? 

 The other day a friend was looking for something to snack on.  She looked in her Mom bag and voila, one half-eaten bag of m&ms and a granola bar….the perfect snack choice.  While she went with the healthier choice of the granola bar;  I would have gone for the m&ms.

Need a needle and thread to sew on that button that just fell off ?  Look in my magic bag.  Want lunch money for school?  Yep, It’s in my bag.  Isn’t it  magical that my daughters (and husband) can go to my magic bag and get what they need?  Sadly, their reliance on my magical purse catch up with me from time to time when I go to pay for my lunch and my wallet is empty.   Just for the record, I ALWAYS blame Brad when that happens, not my sweet sweet girls.

Now I'm gettin' a little sentimental about my Mom bag.  I think back to everything it has held over the years from pacifiers (binkys), to cheerios.  Skinny and thick books...some with fur on the cover.  Then there were markers, a crayon or two, a camera to capture those awesome moments,  soldiers with little plastic parachutes, bouncy balls, and small tubes of suntan lotion spf 50. For four years, it held Joshua’s epilepsy meds in case we were out when it was time for his meds since we all knew how important it was to stay on schedule. 

The size of my bag has gone up and down over the years but it always seems to be just the right size I need.  Even my  mom has her magic bag, it’s pretty little…just big enough to hold her phone to answer my call when I wanna hear her voice.  It has just enough room to hold her credit card which makes me smile when she says,  "C’mon, let’s just  you and me get some lunch, my treat."  Those are precious times!

 Yep, no matter how young or how old you are, Mama's bag is always Magical. 

Hugs,

Sherri

What's the Greatest Chapter in Your Book?

I tend to think of my life as chapters......happy childhood, typical teens, college, marriage, motherhood.  Before we lost Josh I would often greet people with “Welcome to the first day of the rest of your life”.  Now, it just doesn’t seem the same, though I think it did slip out of my mouth once last week...first time in 2 1/2 years.

One of the coolest things I remember a few years ago was a segment  on "Sunday Morning" called Everybody Has a Story.  Twice a month journalist Steve Hartman would travel to some spontaneous place, find a phone book, pick a name, head off to meet the person, and with the magic of television, a name in a book became a beautiful story that would unfold before all the TV watchers like me.  There was never a story that didn’t keep me riveted to the TV.

http://www.cbsnews.com/8301-500617_162-6083832.html

Mr. Hartman reminded me that everyone has a story;   everyone has a book of life.  There’s even reference in the Bible of a Book of Life that God keeps on each and every one of us.  Think about it for a second, our lives are so important that God Himself keeps a record of it.

Soooo, I’ve been thinking a bit about “the next chapter of my life”.  It's probably because we’re driving out to Oklahoma to set Britt up in her apt. …her very first home.  What’s worse is she has no plans to return home to Virginia…..Oklahoma has become her home, her life is there.   Ughhhhh…darn those independent, strong children we are raising. 

Class of 2014, 2012 and 2017

 

To add to it all, I gotta sit down and help select Stephi's Senior Class Photo.   My middle child is a high school Senior.....what's more, she's talking about a college that has her interest.  At least it’s not 21 hours away.  After months of wondering what she wanted to do, she is finally step closer.  Can I get a Yay?!

But truth be told, it's probably because this next chapter is coming way too early.  I’m supposed to have four more years before I move onto the next chapter.  My last graduation is supposed to be 2017, not 2014. 

So what to do when there is a twist in the storyline?   Honestly, I have no idea!!!! And that’s ok.

I thought I was doing pretty good…a pretty interesting read, and then the bottom dropped out and Josh died suddenly.  The last couple of years are pretty dark.

True to form, I heard a song recently that got me to thinkin….

What's the greatest chapter in your book?
Are there pages where it hurts to look?
What's the one regret you can't work through?

(Mine would be You- written by Blake Shelton)

I’m realizing the rest of the pages are blank just waiting for the words of life to be written upon them. 

Let there be pages of fun, pages of happiness, pages of sadness, and let me respect the pages of quiet tears.

Hugs!

Sherri

Sometimes Ya Need a Little Home

Brad and I recently ran up to my hometown of Canton, Ohio to play tourists for a few hours while the girls chilled with the grandparental units. 



William McKinley Monument, Canton, Ohio

If you have lived in an area for a really long time you should definitely play tourist for the day!

Remember all those field trips as a child?   For me and it was President William McKinley’s monument!  I have passed the dome in recent years without a second thought other than "Oh, there's McKinley's really cool lookin' monument."  It was time to go see it again.

Studly Mountain Man ready and waiting

President McKinley's monument is a pretty busy workout hub it seems;  It must be those 108 steps leading up to the monument that draws the fitness gangs.  Always up for the challenge, Brad and I ran the steps with that "I can do anything attitude", much like the little engine that could. Yep, we were pretty much channeling Rocky when he ran all those steps to the top to prepare for the big fight. When we reached the top Brad was ready for more, I was too busy looking for an oxygen tank.

Me wishing studly man would carry me down.

The McKinley Museum had a great collection of Victorian era photos from both DC, my adopted home, and Canton, my birth home.  Looking through the exhibit started out so innocently, and then the triggers began to hit.  We saw the pictures of two adorable children, and learned the McKinley’s were bereaved parents; They lost two daughters early in life.  It was specially noted that Mrs. McKinley never fully recovered from their loss, suffered from depression, and was diagnosed with epilepsy.  Ughhhh, there it is…the dreaded "E-word!" 

The fact that she had no surviving children and was able to be a wonderful first lady is an  incredible feat to me.  Not only was she able to do so much more than breathe in and out, she was able to be a pillar of strength to our nation when she became our widowed First Lady, following the President's assassination.  Amazing respect would best express my feelings.

Many of the familiar Canton landmarks I grew up with are now bulldozed memories, and you can see life is definitely tough here in a town once deeply rooted in steel and vacuum industries.  Nowhere was it more apparent then when we stopped by the church I grew up in.  The majestic red brick building with tall pillars too wide to get your arms around, was once so full of families and children.   Today, it is a shell of its former splendor; The parsonage where I lived with my family for a year, was recently sold to cover church debt, and the sanctuary which once held hundreds has dwindled to a membership of 30 clinging to their faith and their church.  The new parsonage owner, noticed me peering in the window and shared with me their current situation. 

Talk about making lemonade from lemons....even in tough times, they have welcomed a group of Romanian  immigrants in need of faith nurturing, and have given them a place to worship at their side.  They may be separated by language, but when the preacher preaches, and the translator translates, they all understand God’s love.

We were soon heading to the next thing on our list... Putt Putt Golf!  The course I chose is one I've been playing since I was child so maybe I had a little bit of an advantage...maybe.  Brad commented that I was much better on this course than I normally am. Hmmmmm, was that a compliment?  Of course I am....it’s not straight and narrow courses I like, but the swirly, upside downs and curvy ones where I do my best work.  Guess it best describes my life too.

After I kicked my future pro golfer's butt….a time or two, we stopped in to see  my BFF's mom to say hi.  Don’t ya just love visiting the parents of your best buds who love you and use terms of endearment such as “second daughter?” 

Brad drove me over to my high school  for a high school reunion meeting, stole my new cool phone to go play games, and  I met with four classmates aka "The Reunion Committee."   A few years ago, I picked up the reunion planning notebook and have been one of the planners every five years ever since. In an hour, we had a plan, so it was time to head back to mom and dad's.

Exhausted from our adventures, I managed to stay awake in the car, but fell asleep before my head hit the pillow exhausted but content...a cherished feeling these days.  Sometimes ya just need a little home.

Sometimes you just need a little home
A little "hey, you’ve been gone way too long"
Yeah, way too long
No matter how grown up you get
Oh, no matter how far you roam
Sometimes you just need a little home
Home sweet home!

 

~"A Little Home" Sung by Rascal Flatts

Hugs!
Sherri

 

 

My mind today

I have finally joined the data plan generation. 

First of all, thank you to all of you who worked out the kinks over the last few years.  My phone is awesome and I love it!  While it is sad to see my cute little red phone sitting there looking at me next to my humongous pink mini tablet, I know we have nothing but great memories together and are parting on great terms.  It will likely end up in hands of a serviceman abroad thanks to one of the great charities that send cellphones to soldiers to help them stay in touch with those they love.

Oh, btw….I wanted a red case, but they don’t have them yet, so I had to go with pink.

It has been a great distraction for me this week learning how to use my phone.  I am in desperate need of a vacation, as the stress knots in my shoulder keep telling me, so I stay distracted to pass the time until it happens.  To make matters more interesting, Stephi’s car refused to start while she was at the grocery store and I had to go pick her up, come home to figure out what to do, arrange roadside, wait 40 minutes, arrange towing, was forgotten by the tow, had to remind the towing company, and waited another 40 minutes while in the meantime running pup to the kennel since he’s not allowed at darling Sammy’s wedding this week in Ohio.

 

Notice I said Wedding….not a funeral, but an actual happy celebration!!! Bring it on!  I am so ready, I even got a new hair do and I am ready to dance the night away.

Would you look at that stunning white fluffy clouds in the clear blue sky?  Gorgeous!
 

The knot is still there…..OUCH!  Where is that cute phone that does everything?

Did you know you can tell my new phone to find all kinds of information and she will do it?  I may have gone too far when I told my pink phone I loved her.  She loves me too.  I think this is the start of a great friendship.
 

Towing fees, roadside fees, diagnostics fee. The electrician who’s supposed to rewire us a bit so we can keep the lights on when we blow dry our hair didn’t show up again…. Ugh, the knot is still there.  I went to the massage angel and she helped a bit, but it is a serious knot .

I have really missed my Joshie this week!  It has been a crazy mixed emotion week with laying his classmate Bennett to rest on Monday, and all the great happenings in the world of SUDEP.  Real SUDEP conferences, real SUDEP information, real support for the SUDEP cause!  I should be ecstatic and I truly am;  I just wish we were one of the families benefiting from SUDEP research, or tools such as EMFIT monitors.
 

That knot sure is deep.

I found Britt downstairs the other night looking through all photos and videos. She found some videos that have Josh talking in the background.  It was like uncovering a long lost treasure.  I wasn’t even looking at first; just heard that voice and in a split millisecond knew who it was.  My heart did a little flip and I was right back there with all three Newmanettes.
 

I was actually sitting there playing with my new phone and listening to his voice.  Now when I look at my phone I will associate it with his darling voice.  Oh and guess what is my first photo attachment.  A photo of all three Newmanettes!

Gotta love technology.  It allows a part of your past to bring you a smile in your present.


Now, where is my kindle?

Hugs!

 Sherri

The Gentle Side of Grief

A friend IM’d me today….here’s our conversation

S: “Saw Brad yesterday, he looked really tired”

Me: “Yea I know, we’ve both been pretty sad and tired the last week or so.  The rainy weather, Erika’s death, and Joshie’s birthday is comin’ up.”

S: “Yea, that would do it…please be gentle with yourself.”

Me: “Promise!  We’ve been keeping our evenings simple, takin’ walks and talkin’ through it.”

S: “Oh honey, sending you my Love!!! XOXO”

I think that pretty much summarizes my week!

I’ve been writing so many sad words since my friend Erika, lost her valiant 2 1/2 year battle against cancer last Wednesday. She asked me to come see her last Tuesday, so  I immediately took off work and went over to her house for the day.  She looked so small in that bed, but oh her smile!  There was nothing but love between us so we spent our last time together sharing our love, and gratitude for such a wonderful friendship.  As I drove home there were gentle tears of love for my friend.
 

A great night at the Rascal Flatts concert-2011

 

The next day I received the dreaded call that Erika had just passed away, I wasn’t sure I could go say goodbye; I thought it might trigger an anxiety attack, but I called Brad, and asked him to drive me over anyways. He dropped everything to meet me,  drove me over to her house, and stood by my side as I said my final goodbye to my dear sweet friend.  Gentle tears of grief rolled down my cheeks all the way home.

Since then, I'm sure it has been a bit interesting, almost entertaining, if you are lookin’ from the outside in.  I have woke up every morning swearing it’s Friday, only to realize it’s Monday; Did it again on Tuesday….Wednesday and today.  Tomorrow I’ll  finally be right.   THANK GOODNESS!   I even accused Brad of stealing my granola only to find it two days later in the back of a cabinet…in a very odd location.  How’d that get there?  Gentle tears of laughter!

A week after we lost Erika,  the town of Moore, Oklahoma, was flattened by a very rare and lethal F-5 tornado.  I have no right to put myself anywhere on the level of pain Moore residents are feeling. What I do know is my oldest daughter,  a Meteorology major at OU, would have been storm chasing, and witnessing firsthand so much devastation and tragedy had she not just returned to Virginia for summer break the week before.  While she was upset to miss a learning opportunity, I  thank God for keeping her out of harm’s way.  Gentle tears for those who have lost their loved ones, their homes, and their livelihoods. 

If that wasn't enough to think about, I also sent a note to Joshua’s 6^th grade teacher this week, to make plans for his birthday.  The cupcake fairy will rise again to deliver green iced cupcakes to the entire 6^th grade class.  They won’t know why they are receiving cupcakes, they will just gobble them down and be so happy someone did something nice for them.  They are mostly all 12 years old..the age he was…..this year he is his 15th birthday…...  Gentle tears for what we have lost; Gentle tears of thanks that we can see those icing-smudged faces.

The first year after Josh died, the girls wanted to bring some laughter with memories of Josh so they started the tradition of riding roller coasters on his birthday. This year they have chosen Busch Gardens.  So the plans have been made. Gentle tears for the empty seat beside me on the roller coaster; Gentle tears of thanks for having two very thoughtful daughters.

Later that afternoon we will take a short drive to Virginia Beach to feel God’s power, and watch the waves  crash into the shore and quietly recede.  In that moment, Brad and both girls will be standing at my side taking it all in with me.  Gentle tears of sadness that we will only be 4, gentle tears of thanks that I am with the ones I love!

So much sadness, but as I sit here and ponder these words, I remember that right next to me is Erika’s garden.  A piece of barren ground that she turned into a place of color and splendor much like it is now….. and when I think about what she did, I feel a smile creep up on my face.  A beautiful legacy enjoyed by many.

Your suffering is over now, and you are surrounded by the loving arms of those who love you!  Rest in Peace my sweet friend! Gentle Tears of Thanksgiving!

Very truly I tell you, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy.“A little while, and you will see me no longer; and again a little while, and you will see me.” - John 16:20

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