Making friends is tough!

Stephi came home for the long weekend.  I had no idea she was coming home so it was extra nice!

I was laying across her bed catching up as she unpacked and peppering her with the usual questions

• How are classes going? Great, except Math…..I need to learn to translate Chinglish.
• Are you discovering places around college? No mom.  I prefer hanging with my roomie or the quiet of my room.
• What do you do for fun?  Not much. Video games, Netflix binging Gilmore Girls and Ally McBeal.  Sometimes I walk the beach alone.

This stops me in my tracks and my brain is screaming   Noooooo!  Not that I don't appreciate binge watching Gilmore Girls or Ally McBeal.

A day at the beach. Stephi & Josh

After prodding a bit more it came out.  She doesn’t like to make new friends because she doesn’t want to tell them that her brother is dead.

Hands to the sky.  Whhhhhyyyyyy Myyyy Chilllldddd?

My next thought was maybe this would be a good time to become a helicopter parent and make her life easier.

The Newmanettes

Of course, who am I kiddin'?  I haven’t exactly been a great model myself.  I admit I’ve avoided situations that mean I have to answer the "How many kids do you have?" question. 
There was that time during my annual scrapbooking retreat a couple of years ago, where I went into town for dinner with some of the ladies and suddenly realized there was an empty seat next to me.  My heart raced, my hands sweated as I thought about the possibility of someone sitting there and innocently asking me about my children.  Since then, I’ve opted for pizza delivery with friends who were at my side in 2010.

And I should expect better from a shy teenage girl?   This is so unfair!  She was so young and has seen so much ugly already.  She did nothing to deserve this!

I have no doubt God will use her to do amazing things down the road of her life, but right now she’s in the slow cooking character forming part of life, and it’s so hard to watch.

Britt & Friends at Texas State Fair

Dear God… it’s one thing to put me through this horrible experience, but why must my children go through it during a time that's supposed to be so much fun?

I do find hope when I look at Brittany’s early college days.   Her early days were eerily parallel to Stephi’s until God sent some special people to her life who had similar experiences to her own.  She now has a core group of great friends who know the boy in the photos, and the sadness she struggles with every November.  The core group shows up in her Facebook photos at football games, Texas State Fair, birthday parties, and even bison watching.

Road trip to see Britt = Phil Vassar concert in a field

I’m prayin’ hard for Stephi!  I trust her with my whole heart, and I know I am not a helicopter mom, but I think this calls for a roadtrip  to North Carolina,  “Gilmore Girls style" a little crazy, totally spontaneous, and with lots of laughter! 

Where You Lead by Carole King (Gilmore Girls Theme)

Where You Lead,  I will followIf you're out on the road
Feelin' lonely and so cold
All you have to do is call my name
And I'll be there!

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

Teenage Daughters

Country music artist Martina McBride has a new catchy song playing on the radio these days.

I love Martina...she always seems to record songs that reflect my life at whatever phase of life I'm living. There was "Happy Girl" when my kids were in elementary school and we were living in the Mom Mobile with all their activities, "This One's For the Girls" which coincided with my discovery that I now needed "my blonde in a bottle" to cover grays, "God's Will" which taught me to appreciate everyday together because it's a gift, "Anyways" which talks about love and loss and loving again, and now my new anthem, "Teenage Daughters" which shares sweet teen daughters are but how much energy they take to raise.

I love my daughters, I really do...they are turning out to be very kind, caring, intelligent women with much to offer in the years ahead. They also try my patience to the very core of my being.

I can't believe they have grown tall enough to look down on me, but they both have. One blessing from that is the feet required to support their heighth cannot fit into any of my shoes.

They have both experienced a traumatic loss and yet been able to smile and love again. They are amazing souls who could serve as an example in living life after loss.

So many articles and stories warn how living siblings are often the forgotten statistic of loss as their bereaved parents try to just make it day to day following the loss of a sibling. So sad, but so easy to do. In my own experience, my first instinct as the terror unfolded that morning was the safety and well-being of my girls. Friends took them away from the house and cared for them and loved on them all day. I ran back and forth between houses because I didn't like them being out of my sight!

I still fight anxiety when I go to wake the girls or kiss them as I leave for work. I fight the anxiety to let them out of my sight at all, but I know I must. I know I have to give them some semblance of "normalcy" and just let them know how proud I am and how much I love them.

They have been my comfort and my worry. They are my reason for living ... I tell folks that I seek Joy because I want my girls to want to be around me...to return to a warm home once they go to college in 1/3 years respectively.

There are some things I can't help such as the moments of despair that can hit me in a flash or my loss of memory due to the trauma, but there are things I can do for those two crazy teens who live on. I can care for them and guide them even in those moments when sending them to Grammy's house sounds like a better idea.

Just as Martina sings...

*They're beautiful, wild and free. Everything we wish we could be..
But they're still crazy, oh you know, they make us crazy

I ain’t complainin’, but I’m just tired, so I’m just sayin’ what I think
And if we’re being honest than honestly, I think I need a drink.

Hugs to all our wonderful Teenage Daughters.

* "Teenage Daughters," Martina McBride & The Warren Brothers