Glorious Reunion

Saturday night I was out waiting for a friend, when  “Baby Girl” rang from my cellphone.  when I hear that ring it means......STEPHI!!!!!   Oh, how I have been missing her and her sister. I made sure to tell her that before we ended our conversation.

After a short visit with my friend, I ran through the drive thru for some dinner and turned onto my street.  There on the street I noticed that familiar baby blue Mazda in front of the house.  MY BABY IS HOME!!!!  The little stinker was  not six hours away at college while we were talking;  she  was sitting in my comfy spot at home eating my pizza all the while she was listening to me whine about how much I missed her.  I gave her a big silly grin hug, and chilled with her until bedtime.

Sunday morning, I checked on Stephi and found her sleeping so peacefully, then I watched church via the Internet.  I  couldn’t get my feet to walk me into the sanctuary that morning; sometimes it isn't the place of worship I love;  sometimes it is the place where I sat and stared at my son’s casket. 

As I watched the service, the sanctuary exploded with joyful applause as they witnessed one family's joyful reunion after a four year separation.  The father, Nick, was a self-professed Christian in a predominantly Muslim country, who religious belief forced him to flee the country to save his life.  Sadly, his family was unable to join him immediately.  I’m sure no one realized at that time it would be four years before they would be reunited.

Four years apart!  That hit me square between the eyes!   We have been separated from Josh for four years!!!  I couldn’t take my eyes off this family before me on the tv.  I was so drawn to the smiles on their faces;  I was so thrilled for them; so envious of their joy!

Our 4 -year mark is very different from theirs.  We are hurting to the very core!  The number of heart-wrenching  phone calls has jumped, Stephi needed to drive 6 hours to go to the cemetery to see her brother, and come home to us,   Brad has that hollowed look in his eyes, and I am all over the place trying to hold it together.

As I listened on to the service, I could feel the sermon speaking to me.  Our pastor  talked about how God may not  change my circumstances, which I am grappling with, but he changes ME in my circumstances .

Hmmmm, guess I’ll have to sit on that one for awhile but as I do that I will celebrate my  23rd wedding anniversary,  welcome my girls back into my arms for Thanksgiving, remember by ornery sweet boy, and give hugs to this year's Josh Newman Memorial 5K for SUDEP awareness runners/walkers. 

There's no way to avoid all the emotions of this time of year.   It will be heavy on the Laughter, and heavy on the Tears.

If you and yours are around Virginia on November 29th, feel free to come walk with us.
http://www.events.org/newman5k/cpage.aspx?e=78755


HUGS,
Sherri

Drinking Naked

Brad and I are trying to approach this Premature Empty Nesting with an open mind.  Last Spring I took golf lessons so I could join him on the golf course.  So far, we have been hitting some of the local PAR 3 “easy” courses as I learn the game.  Our approaches are very different, but it works for us.  Brad is very strategic with his range distant tools and relies on the perfect club, with the perfect form.  Me?  I usually go like this…. driver, 7, 9, chipper, putter.  Distance is not a factor.  If I change it up, it's because I get bored using the same ones over and over again.  A Par 3 means you are supposed to hit the ball into the hole in 3 hits, so I’m averaging 7 hits per hole and I'm ok with that.  Now, where’s the beer boy?  Maybe that will help my game.

My promising golf career was temporarily sidelined two weeks ago after  I did my usual awesome and powerful swing directly into the hard ground.   The golf club bent back, and so did my thumb.  When I  heard a “crack” and felt instant pain, I knew I was in trouble.  I whined for the last three holes, and Brad did his best to distract me with his offers to stomp on my foot to help take my mind off my thumb.  Thanks honey!

 There have been some good things brought about from my injury.  It has definitely given me the respect of  the “good ole boys club” at work.  “Could you open this water bottle for me?  I have a golf injury”  as I point to my thumb.  “Could you please repeat? I can’t write very well because of my golf injury”.  Dang, and all this time, I thought it took short skirts and high shoes to get their attention.  Ladies, we have it all wrong.  Who knew?!

Golf is out for now, but the weather is still awesome so Brad and I  had to find something else to do while my golf injury heals. 

We live less than an hour away from the Shenandoah Valley, so when Brad came up with the suggestion of heading out to the infamous Skyline Drive to see the fall color, I was jumping in that passenger seat.  The day showed great promise until we discovered 5 miles of cars filled with folks also waiting to get on Skyline.  It quickly became apparent Brad was losing his patience, and looking for other options. 

What to do?   Oh genie in the phone, please help me!  My wonderful smart phone suggested we Drink Naked! I made the suggestion to Brad, and he couldn’t turn the car around fast enough.  A few moments down a beautiful country windy road lined with beautiful yellow and reds, and we turned into Naked Mountain Winery.

 

 

At first, we noticed all the young people, young groups, couples, families, then as neared the tasting bar, we noticed  the couples like us.  Couples making memories now that the kiddos are out of the house.  We probably looked just as normal to them as they did to us, but I can tell you, we are not liking this next chapter at all.  In fact, I’d say we have regressed in our grief of losing Josh, and now both girls are on their own.  We just suck it up, and try to make the best of it. 

After Drinking Naked, we walked back to the car hand and hand, and took the long picturesque way home winding through the plantations, horse farms and majestic color. The colors were magical.   This journey has  shown  me  that life isn’t easy, and to make it through, you need to remain open minded and see how life unfolds.  You may have a plan, but it may be Plan B that takes over.

As if on cue, Stephi texted and wanted to know what we did all day.  My response? “We drank naked today”.   My daughter knows humor is how I cope, and I’m sure her eyes were rolling, but it made her smile, and hearing from her made me smile too!

 Blessed are those who can laugh at themselves, for they shall never cease to be amused.  ~Unknown

 May you find beauty in every challenge!

Hugs!

Sherri

 

Twinkle twinkle

Our little Christmas tree is up and spinning.  I hope it keeps twinkling and spinning;  I took extraordinary measures to keep Stealth kitty away.  I put pinecones under the tree because someone said cats don't like the feel of them, I sprayed STAY AWAY on the branches, and lathered Vaseline on the light wires per recommendations from Facebook friends.  Word to the wise Stealth Kitty...stay away from those wires.

The tree was today's only achievement even though I stayed home from work;  I wasn’t sick, just incredibly tired after Joshua's 5K.

Doctors warn that grief causes energy levels to bottom out, and stamina, becomes a memory.  I have found that to be true for us.  We’re three years into this journey and both Brad and I start clock watching at 9:00 pm waiting for 10:00 to hit so we can fall asleep without disgrace.

When the big dates come around like Joshua's birthday and Angelversary, or the epilepsy/sudep events are over, I find myself ready to collapse.  It’s usually not the day after the event, but a couple of days later once the adrenalin wears off!

Today was that day!  I woke up to take a shower and then I just knew I needed to hit the covers again and sleep.  When I woke up a couple of hours later,  I put up the little tree we decorate with White House ornaments and patriotic ornaments, dressed up the stairwell in ribbons and bows and set up my newest decoration.

I'm trying.....See if you can tell what I’m seeking this Christmas Season.

 

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

 

 

 

 

Memory Keeping

I am a huge scrapbooker!  In fact, I enjoy it so much,  I went away for an entire weekend to a scrapbooking retreat resting only for a few short hours at night. 

My very first scrapbook was a notebook where I taped all the Donny Osmond articles, and my ticket stubs from his concert.  No laughing please....the man still looks good and he's a grandad! Ok, maybe I should have left that last fact out.  Anyways, those were some great days!

This memory album habit continued right up to now.  I loved it when I shared the adventures  of life, which gradually included the tall mountain man, our wedding and one by one, three Newmanettes.

When Josh was about a year old, I became a Creative Memories "Memory Album" Consultant. to support my habit, save my sanity and supplement our income while the kiddos were so little.  It was great.... I would play with the Newmanettes all day long, throw their crabby, tired young selves at their father at dinner time, and go off to show other women (and a few men) how to preserve their photos and bring out their creative juices, sometimes with the aid of "grownup" juice.

Another benefit to this passion are the gobs of family and children albums that fill our house.   There were times they could be a slight hazard when I would trip over one or more spread out across the floor by a small boy who loved to look at his photos.

Then came the day that changed my life forever.  Joshua was just buried and I came home to a full house of loved ones showing their support.  I walked into our  living room and was quickly moved to tears as I saw friends and family thumbing through Joshua's albums enjoying the memories of his life.  I can't really explain the feeling other than I felt I had done something right during a time when I was questioning myself so much.

A few months later, the photo albums took on healing powers when we included photos of so many of those we love walking for epilepsy in Joshua's memory. 

I recently noticed a new habit I have developed in the memories corner while designing our annual Valentine. I always include photos of the kids and our family, but it just didn't seem the same without Joshua, so I found the perfect photo thanks to several of the girls' friends....  It's a photo sharing tribute to Joshua.  You'll see it later.

Joshua's friends scratched this out near the end of our first epilepsy walk.  Big Hug in gravel!

It was the latest of  tribute photos.  It joined the photo taken at the epilepsy walk photo of Joshua's name scratched out by his friends in the gravel.  Then I found the photo of the teddy bear made from his Hershey Park shirt to go with our visit to Hershey Park to ride Roller Coasters for Joshua's birthday  last June.

Your past is your future and I still want to include Joshua even though he is no longer here with us.   I guess it's a creative side to my grieving, but it works.  I can see it now.  Instead of Flat Stanleys all over the world, people can send me photos of "Joshua" memories when he is in their hearts...oh wait we have some of those.

Our friend Maria sent this photo with her Joshua's Smile cap during her trip to Paris..Love it!!
 

I hear the stories of other bereaved families who are actually criticized for talking about their children.  We have not found that with our friends and family.  So many great stories, so many ways to remember our sweet ornery one. His impact on those around him didn't end on the day he died, so why should the happy memories?

We are surrounded by buildings, parks, and statues dedicated to the memory of loved ones who have made a contribution.  Those are great, and I imagine they help their remaining loved ones feel such a pride that they are remembered.

Here's the photo for our Valentine this year.

The girls' choral group came to show their support at the Joshua Newman 5K.

For me, the monument to Joshua's legacy is captured in photos and they have become absolutely priceless!

Do something for me.....take lots of photos, and make sure you're in them too!

Hugs!
Sherri