Thursday, July 5, 2012

Opening the Box

Off topic from what I usually write here, but before I can sleep I need to clear this from my head.

From the time our kids were little, our 4th of July tradition had been to spend the day at my dad's farm.  We would spend a week planning out the meal from burgers and brats to my step mother's AMAZING potato salad to the red, white, and blue jello she made for the kids every year.  By noon we would be at the house setting up and preparing for the day's festivities.  

The kids would help their dad unload the trunk full of fireworks with wide-eyed anticipation. 
"How long til it's dark?"  
"Can we just do one now?"  
"Pleeeeease?"  

Before long they would be popping Snaps on the sidewalk and squealing with delight.  My brother and sister would come out with a box of matches and help the little kids light the black tabs that would grow into "snakes" and set off colored smoke bombs in the driveway.  




By the time dinner was ready, Sean and the other "big boys" would have the daytime attractions ready to fire:  bottle rockets and parachutes.  Kids would scramble as the paper parachutes drifted through the sky.  


Despite the heat, my dad would start a campfire and set up a semi circle of chairs facing the large gravel driveway.  He was always mindful of wind direction and to make sure no one got too close to the livestock or the hay barn.  We would fill our plates with food just before dusk and settle in around the campfire.  Before supper was over, the kids would be begging for marshmallows to roast.  

As the sun set in the west, the boys would start their fireworks display. Aerial repeaters, roman candles, helicopters, ground spinners, strobes, and fountain tubes filled the air with gorgeous colors of flashing light and the smell of sulphur. When the show had finished, the kids would get their turn with multicolored sparklers to see if they could write their names in the air before it burned out.

After our supplies were spent, we would pull our chairs into the driveway for a perfect view of the city fireworks display. Dad always joked that we had to move further out into the driveway each year for a good view because, "It seems like those trees get taller every year."


When the last sparkle left the sky, it was time to gather around the bon fire and roast marshmallows.  If you were roasting for Grandma, you would stick it deep into the flames until it caught fire.  For the little kids, just a little brown around the edges.  Add graham crackers and Hershey bar for the most finger-licking melty treat you can imagine!  



The logs would slowly begin to burn out and turn to ash.  Any free lap was prime real estate for a sleepy child. A few stray fireworks would pop in the distance from time to time. 

I have missed these times greatly in the past few years.  The farm no longer stands and my dad is gone.  My husband can't enjoy the fireworks the way he once did and the children are grown with plans of their own.  Today was HARD.  

A wise and wonderful friend told me tonight that the reason today was so painful for me was because these memories are like opening up a box of my father's belongings--things I'm not necessarily ready to deal with that have raw pain attached to them.  I opened a box and looked inside.  It's all there, inside me.  So until next year, I'm going to replace the lid and store that box away, knowing there is a piece of me stored inside as well. It's not gone. . . but will be there when I'm ready to peek in again.  


Monday, June 25, 2012

Western Blind Rehabilitation Center


Sean was accepted into the Comprehensive Neurological Vision Rehabilitation (CNVR) program at the Western Blind RehabCenter (WBRC) in Menlo Park, CA.  On February 21st we flew to California to get him admitted into the program.  Through the VA’s Caregiver Program, I was able to spend the first week and a half at the blind center with Sean to help him adjust and to observe the program. 

The staff and program at WBRC were impressive! We both felt at ease and Sean settled into his routine.  His day included:  Manual Skills where he learned woodworking, ceramics, leatherwork, and gardening; Orientation and Mobility which offered a refresher on his mobility and cane skills along with training on the TrekkerBreeze; Living Skills focused on cooking, cleaning, and using devices such as the Milestone to better organize his day; Visual Skills emphasized using the Victor Reader Stream for his audio books as well as using proper lighting and scanning techniques; CNVR training instructed him in use of the iPad and his computer, and introduced him to Interactive Metronome (IM).  IM uses rhythm to help reset the brain’s timing and to improve a variety of functions including memory, concentration, and focus.  Sean will be continuing IM therapy at home.

Before I returned home we took the Caltrain into San Francisco for the day.  We went to Pier 39 and took a boat tour of the bay around Alcatraz and under the Golden Gate Bridge.

I returned for the family training portion of the program on May 9th.  We met with the neurologist and with Dr. Cockerham and discussed the results of the MRI.  The high-resolution MRI did detect areas of brain damage on the right side in the frontal lobe, temporal lobe, and deep white matter.  While there is not visible damage in the occipital lobe (visual center of the brain) vision travels throughout the brain and all parts of the brain play a role in what the brain sees.  Sean’s damage is on the right side, and his weak eye is his left since vision crosses the brain while it travels to the back of the brain.  Testing indicates that Sean receives very little visual information through his left eye.  When presented with a light bar approximately four feet long with flashing lights, Sean’s eyes responded automatically to lights on the right side, but did not respond or “jump” to any stimuli from the center of his body to the left.  While there is no clear “x marks the spot” answer, I respect that there are things medical science cannot explain and that the doctors were up front and honest.  The instructors who worked with Sean every day did not find any indication of conversion disorder.  At this time continued vision rehab, such as the CNVR program, is recommended for possible improvement over time.  Sean will likely return to the WBRC in 8-12 months.

Overall, we were thrilled with the program and found the staff, training, and accommodations to be top notch!  HUGE thanks to John and Dan of the CNVR program, as well as to Nikki, Anita, Paula, Matt, Tony, Nicole, and all the nursing staff (and anyone I forgot)!



Western Blind Rehab Center, Menlo Park, CA
Playing Black Jack
Pier 39
Sea Lions at Pier 39
Golden Gate Bridge
Sean made dinner in Living Skills
Watering his garden
Working in the shop with Tony
Graduation with Program Manager John Kingston
Technology Class with Dan

Wednesday, June 20, 2012

CDMRP

March took us to D.C. to participate on a panel as part of the Congressionally Directed Medical Research Programs.  Basically, we reviewed grant proposals and then worked with a panel comprised of veterans, doctors, and scientists to determine the merit of each proposal as it applied to science and to the impact for patients.  To say this was a learning experience would be an enormous understatement!

The highlight for me was meeting fellow FOV staff Brannan Vines, and Amanda & Tony Patchell!  So exciting to meet my friends in person and be able to hug each one of them.  The trip was a huge success and a great time was had all around.

Melissa with Brannan Vines,
President and Founder of Family Of a Vet
Melissa and Amanda
Tony and Sean

Challenge Aspen C.A.M.O.

In February Sean and I had the amazing opportunity to participate in the Visually Impaired Ski & Snowboard festival through Challenge Aspen C.A.M.O. We traveled to gorgeous Snowmass, Colorado for a week-long adventure filled with skiing, friends, and relaxation.  

Sean easily picked up with skiing as if he'd never stopped.  The sport is excellent for his balance as well as for physical fitness.  We spent time with fantastic friends and made new ones as well.  The girls took a day off and rode the gondola up Mount Aspen and had lunch at an incredible hidden gem called Krabloonik where we were able to watch the sled dogs get hitched and ready to run.  



Steven Schulz and Sean at Spider Sabich

Sean with instructors Kathy and Jim
Torrey Shannon and Melissa riding the gondola
to the top of Mt. Aspen

Girls' Day at Mt. Aspen
Dog sleds at Krabloonik
Melissa and Debbie Schulz 
Sean, Karen, Eddie, Steven, Sergio, Corey, and Dorian

We enjoyed our experience so thoroughly that we will be heading back to Snowmass in July for Horses for Heroes, part of Challenge Aspen's C.A.M.O. program.  Can't wait!  

Sons of Southfork



This post is horribly overdue!  But I decided to share it anyway because the Sons of Southfork have been avid supporters of Sean's cycling and recovery.  Every October they fly a group of veterans to the Southfork Ranch in Dallas, SD for a weekend of pheasant hunting and camaraderie.  Celebrities such as Kent Hrbek and Tom Watson come out and spend the entire weekend hunting side by side with disabled veterans.  Please watch the promotional video to truly understand the impact these men have on the lives of wounded veterans.

Wednesday, April 25, 2012

Time Off?

I am more than a little insulted by the comment I've heard more than once in the past two months, "Are you enjoying your time off?"  Seriously?  Is that what you think I am doing?

I'm a full-time caregiver.  I resigned my position at school because my husband needed my support at home.   We were fortunate that he could come to work with me and offer his services as a volunteer so that I could keep an eye on him and not leave him home alone.  It was a quick fix, and while he still volunteers when he is able, taking him to work with me was not a long term solution.

Yes, I'm at home.  But guess what?  I am working.  Not only am I providing 24 hour support for my husband, I am the Volunteer Coordinator for Family Of a Vet, an AMAZING non-profit organization that is working tirelessly for veterans and familes.  FOV currently has almost 250 Grassroots Volunteers.  Through our website, facebook page, and social media we reach tens of thousands of people each month!  I am on call around the clock to provide support and resources for our members. The past two months have been filled with late FOV nights, and busy days.  Here is a run-down of what I do:

  • advocate for veterans and families
  • locate and provide resources
  • research
  • moderate group rooms online
  • offer ongoing support to our members online and through email and phone calls
  • manage the "virtual" volunteer database
  • coordinate and host the weekly Caregiver's Edition of our Life After Combat Blog Talk Radio Show
  • coordinate with staff on projects including our blogs, fundraising, website, networking
  • use social media to raise awareness of veterans issues

I may not be working in the conventional sense, but I'm making a difference in the lives of veterans and families.  I am providing the support I wish I'd had six years ago when we started this crazy roller coaster life of uncertainty.


You may think I'm just goofing off, but actually facebook is my office. Family Of a Vet is a non-profit run by veterans and family members who *GET IT* and are trying to reach out to others who are struggling like us to help and offer support and education.



Shared by Family Of a Vet, Inc., a national non-profit 501(c)3 organization dedicated to helping veterans and their families learn how to cope with PTSD (post-traumatic stress disorder), TBI (traumatic brain injury) and life after combat through real-world, plain language education and resources for heroes, families, and communities.

If you know a veteran or loved one that we can help, please encourage them to visit us:

One the web - www.familyofavet.com 

Monday, February 6, 2012

Sometimes life with PTSD means. . . part 3



**This album is a collection of thoughts & quotes from Veterans and those who love them who are living life with PTSD. If you'd like to submit a quote of approximately 70 words or less to possibly be included in this album, please send it to info-at-familyofavet.com.**

Shared by Family Of a Vet, Inc., a national non-profit 501(c)3 organization dedicated to helping veterans and their families learn how to cope with PTSD (post-traumatic stress disorder), TBI (traumatic brain injury) and life after combat through real-world, plain language education and resources for heroes, families, and communities.
If you know a Veteran or loved one that we can help, please encourage them to visit us:

On the web - http://www.familyofavet.com/
On Facebook - http://www.facebook.com/lifeaftercombat
On Twitter - http://www.twitter.com/familyofavet
On our blog - http://blog.familyofavet.com/
On BlogTalk Radio - http://www.blogtalkradio.com/familyofavet
On YouTube - http://www.youtube.com/familyofavet

Tuesday, January 3, 2012

Sometimes life with PTSD means. . . part 2

~Wife of a Veteran with PTSD
~Wife of a Wounded Hero
~Wife of a Hero with PTSD & TBI
**This album is a collection of thoughts & quotes from Veterans and those who love them who are living life with PTSD. If you'd like to submit a quote of approximately 70 words or less to possibly be included in this album, please send it to info-at-familyofavet.com.**

Shared by Family Of a Vet, Inc., a national non-profit 501(c)3 organization dedicated to helping veterans and their families learn how to cope with PTSD (post-traumatic stress disorder), TBI (traumatic brain injury) and life after combat through real-world, plain language education and resources for heroes, families, and communities.

If you know a Veteran or loved one that we can help, please encourage them to visit us:

On the web - http://www.familyofavet.com/
On Facebook - http://www.facebook.com/lifeaftercombat
On Twitter - http://www.twitter.com/familyofavet
On our blog - http://blog.familyofavet.com/
On BlogTalk Radio - http://www.blogtalkradio.com/familyofavet
On YouTube - http://www.youtube.com/familyofavet

Sunday, January 1, 2012

Sometimes life with PTSD means. . .

~Veteran, US Army (Desert Storm)

 ~A Veteran Struggling with PTSD
 
 ~Wife of a Combat Veteran with PTSD
 
 ~Combat Veteran with PTSD

~Combat Veteran with PTSD

**This album is a collection of thoughts & quotes from Veterans and those who love them who are living life with PTSD. If you'd like to submit a quote of approximately 70 words or less to possibly be included in this album, please send it to info@familyofavet.com.**

Shared by Family Of a Vet, Inc., a national non-profit 501(c)3 organization dedicated to helping veterans and their families learn how to cope with PTSD (post-traumatic stress disorder), TBI (traumatic brain injury) and life after combat through real-world, plain language education and resources for heroes, families, and communities.

If you know a Veteran or loved one that we can help, please encourage them to visit us:

On the web - http://www.familyofavet.com/
On Facebook - http://www.facebook.com/lifeaftercombat
On Twitter - http://www.twitter.com/familyofavet
On our blog - http://blog.familyofavet.com/
On BlogTalk Radio - http://www.blogtalkradio.com/familyofavet
On YouTube - http://www.youtube.com/familyofavet