Empty Nestin - Decorating

Decorating has been my distraction lately.  Now that the girls are off to college, I’m looking at their rooms with fresh eyes.  Since they took most of their stuff with them, I need to make their rooms cute again. 

Britt’s room was pretty easy,  all I had to do was walk around my house and grab a few things, such as the lovely bottles left to us by Brad’s grandmother, a huge starfish from a long ago Bahamas trip, some great seashells, and voila.  Beachy Bedroom!
 

  


Stephi’s room still has a lot of her stuff, but there are gaps.  I was sitting there when one of her garden photos grabbed my attention.  THAT’S IT!!  I'll use Stephi’s GARDEN PHOTOS! 

Stephi is a great amateur photographer with a great eye!  I love her work so much there are several on the walls throughout our house.  Here are two I want to put on her walls.

 
 
I kept walking by, and finally opened the door to Joshua’s room.  We’ve changed little things over the last 3 ½ years, but it's still Josh.   Since it is the largest kids bedroom, with a large bed, his room has always been our guest room.  That meant throwing Josh out from time to time, but he didn’t mind. 

These days, I keep wondering if we should leave it as the room of a "forever 12 year old boy", or update it a bit like we have updated the girls rooms. 

I would like to make it welcoming and peaceful, though I don’t know if that’s possible; The four of us are split on what to do.

 
I looked at Peyton Manning's jersey!  Josh was such a huge  Peyton Manning fan.  He wrote how happy he was to get to see Peyton and the Colts play the Washington Redskins. 

I’m so happy Josh and Brad had that night together!  When we lose a love one, we tend to hone in on regrets.  In this case, we got something right.

As it should, although I object at times, life has moved on around us, and so has Peyton who is now a Denver Bronco.  I changed Joshua's Colts bedspread right after his funeral, which was pretty traumatic for all of us.  Last week, I changed the window valance to match the bedding, which  I admit, brought on some anxiety on my part. 

After all of this, there was still one thing I just had to do!  Something was missing.….a Broncos banner.  I went online and ordered a pennant to go on the wall opposite of the Colts banner. 

Who knew how emotional it would be to fill these three rooms?!  Just yesterday, it seems,  I was getting after the Newmanettes to keep a path clear from bed to door. 

Oh how I miss the messes, the smells, and the sounds!
  
 I sat down on the edge of the bed after I tacked the banner on the wall, and found my eyes full of the tears I couldn't stop, but when they finally did stop, I stood up, put fresh sheets on the bed, and thanked God that there are three rooms that hold treasures and memories of my three children.


“A child enters your home and for the next twenty or so years makes so much noise you can hardly stand it. Then the child departs, leaving the house so silent you think you are going mad.” -- John Andrew Holmes

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

 

 

 

 

Oblivious to the obvious-off to college

It's here, another major milestone!  Brittany is off to college.  I am still in denial and may stay there until ....hmmmm December sounds good...then she'll be home on break.

Brad, always the practical engineer,  has been trying to prepare me for this huge change.  He always forgets I have the gift of being oblivious to the obvious.   I think I like that gift right now.  He is already grieving the loss of having Britt at home to aggravate and love on a daily basis.  I don't feel it yet...I can only focus on today and she's here.

Maybe it's more real for him because he took her to the college visitations "way out there" and watched her face light up once she saw the campus.   He knows her heart is already in Oklahoma.  It will be Brad taking her on the big road trip from Virginia to Oklahoma with stops in Tennessee to visit family.  We will pray hard for Brittany as we know how much Brad loves to travel through busy unfamiliar cities, and how he likes to "passionately critique" other drivers who perhaps aren't focused on driving while behind the wheel.

You would never know this man has travelled all over the world during his career.  He has been fretting about everything.....will everything fit in the car?  Is she packed? Is she ready?  I assure him everything will be fine.  In about a week I won't be so sure.

 Britt is fretting as to whether 10 pairs of shoes and 2 suitcases of clothing are too much.  I remind her, that this is her life...this is not summer camp.   Take it all and see what fits! 

Brad is so focused on Britt that he has filled the car with college stuff and left his beloved golf clubs at home alone without a sitter.  When Britt asked him if he was taking his clubs on this trip with her, and he answered "No, it's all about you!"  I think she was shocked...and touched.  No greater love is there than a parent for their child.

I find it both touching and amusing that Brad is worried for ME when "It" hits the fan.  All those  times he was pacing back and forth that he did over the years as I slept soundly, or read to pass the time, and he is worried about me?!   ...I know he has a valid concern.  Both my Alpha and Omega children will both be away from me.  Let's not think about it. 

Let's think about what this means to Stephi.  I can see it now....Stephi will be so tired of being the center of our attention, that she will run wildly out of the door screaming for space and her independence when it comes her time to leave in two years. 

I'm  now turning to distraction by suggesting to Brittany that she map out the road trip she and her dad will take and stop for some great photo ops such as "Largest ball of yarn; World's largest skillet" or something fun.  It looks like Graceland in Memphis might fit the bill.  I'm sure Brad will love the jungle room.

As my mind wanders, all I can think about is I hope she has as great a college experience as I did.   I loved college and the people who became my life.  I reminded her that she needs to find her "Marcia and Gloria"...former college 'partners in crime' aka roomies who have become sisters of a different mother.   

Oh, and Britt if you're reading this, I really don't need to hear those amazing stories of what made those college friendships great until years from now. My heart is fragile :)

Yep, I'm handling it really well.

~ I have told her I have plans for her room. She just rolls her eyes.

~ I remind her that I won't even notice she's gone. She laughs until she cackles.

~ I have told her I will get my needed daily hugs from other sources...strangers if I have to. She nods in agreement to that one. Hmmmm.

~ I have told her I'm thrilled my house will remain clean.  She reminds me she was the neat child.

I have used great quotes from well respected sources such as the movie "Bull Durham" to get her prepared.  "Brittany, college classes are gonna light you up like a pinball game for a little while; Don't worry about it".  She looks relieved.  Really?  I quote a baseball movie and she gets it!

 I'm not really in denial.  I know I'll miss her and grieve her madly, but right now all I can be is excited for her! How wonderful is this first taste of independence?  She gets to make her own dreams come true and enjoy the moment!  Her "workday" is a day of constant learning, reading, and socializing with people her age.  Her whole world is within walking distance and she will plan her life out a week at a time. No greater time is there than these.

Of course it comes up....that big elephant in the room.  How will she do on her own across country when those pangs for her baby brother hit full force?   I honestly don't know....we are venturing into uncharted territory.  But one thing is certain... I am only 1 exit away from the airport and I will cash in my 401k if that's what I need to do to get to her in a time of need. 

She is my oldest child, my light, my world and now it's time for me to let her grow her earthly wings.  I just won't let her see the tears that fall as we leave her on her own.    I have to keep remembering that she is God's child and there are things he needs her to do so I will do my best to cut the apron strings and let her do her thing.

It all comes down to this great quote by Eleanor Powell.....
  "What we are is God's gift to us. What we become is our gift to God." ~Eleanor Powell

Sending Hugs to my Beautiful Brittany! 

Hugs,
Sherri

Crunchy on the inside

I recently had a massage. This monthly visit started 9 months ago shortly after Joshua's death when I found myself physically aching all over and Brad noticed how tight my shoulders were to the touch....then like magic, a coupon showed up in the mail for one of those new massage chains, and off to the masseuse I went. God bless the masseuse! This angel here on earth with fingers of rubbery steel worked diligently to offer relief to my crunchy body. I was actually so knotted she told me "I don't normally say this, but you NEED to come see me again as soon as possible."

Funny thing about all this was while I was very crunchy on the inside I looked perfectly fine on the outside...hmmmm.

I have to admit something to you....10 months out, I am not ok...losing Joshua is an excruciating pain that stays with me 24/7, but I am getting really good at playing the "I'm ok game" pretty well. The "I'm OK Game" is the game I'm learning to play to make those around me feel more comfortable at work, around town, etc. I put on a socially acceptable expression, state I'm fine and "act normal"...my own personal reason for this is I don't want to be the center of pity, I don't want the attention and I do prefer to mourn in private.. not to mention that until I finally play and win the lottery, I gotta keep my day job to put food on the table.

The only problem with my game is it makes me "crunchy". These aches were only the first of several physical kicks that my family has faced since losing my youngest child. I personally lost 25 lbs within 1 month of Joshua's death (I regained it back about as quickly) developed anemia, and a stomach ulcer. Fortunately, with medication and a little outpatient procedure I am on the mend.

Statistics show that 70-80% of parents who lose a child will experience a medical emergency within 2 years of their loss. This can include anxiety, depression, headaches, and it is believed the stress can trigger cancer in some instances which unfortunately became a reality for our family this past summer that has a positive outcome at the time of this writing. Thanks be to God!

This is my choice...I have chosen to continue to play the OK game to keep friends and family comfortable out of my love and respect, and hope they in return may not verbalize but respectfully allow me to learn how to live again on my own terms. I'm not rushing things anymore...I have my whole life to work on "getting over it" and over time, with prayer, experience and practice be assured I will learn to live again.

In the meantime, as all sides learn our new roles without my sweet ornery little boy, I will continue to be grateful for those little angels with the magic healing at their fingertips who don't even know they are a gift from God.

Hugs!