Wednesday, February 29, 2012

2 sons, 2 hospitals, 2 states, 1 Mom torn in 2

2 special sons
2 different hospitals
2 far-apart states
2 broken cars
1 stressed Mom torn in 2

(Thank you, Yvette, for that statement.)

In the past seven months, I have almost lost two sons.  It's almost too much for me to bear.

Seven months ago today I arrived in Bethesda, MD to await Derek's arrival.  So much has happened since then.  When it was time for the kids to start school, I broken heartedly let my children return to NJ to live with my sister.

They have visited many times, but I miss them every day.

On Friday I received a 911 message that my sister was trying to reach me.  My 17 yr old son, Ryan, was being rushed to the Emergency Room.

Ryan is 6'4", skinny as a rail, and he has a gerbil on his face that he calls his goatee.

He was sent home from school not feeling well, and a short time after he arrived home, he collapsed.  At the ER, they determined that he had a spontaneous pnuemothorax.  Tall, skinny, young males are prone to them.  (Watch out, Dr. Diego!)  They immediately placed a chest tube to reinflate the lung and suction out the air.  The doctor later told me that if my sister had not been home, Ryan would not be with us today.  It was a life threatening event.

Needless to say my Friday was not a good day.  I have two broken cars, so I had no easy way to get back to Jersey.  My heart was breaking not being with Ryan during this time.  Finally, I decided to suck it up and rent a car.  I cannot afford it, especially with no job, but I had to get home and I could not wait on the wonderful SFAC to arrange a flight or whatever. 

I arrived back in Jersey at 9 on Friday night, and I stayed in Ryan's room, with the exception of a few hours on Sunday. 

After five days in a civilian hospital, I can unequivocally state there is just no comparison.  WRNMMC is so much better.  What an experience this weekend was.  No fun.

He was finally released on Tuesday morning, and I returned to Bethesda on Tuesday night to assist Derek with oupatient.

Ryan is a trooper.  The kid has amazing stamina and pain tolerance.  He was released with a remaining five percent plural effusion, but the doctor believes he will be okay.  We just have to watch him.

Torn to pieces.  I wanted to be with Derek during his first weekend pass.  I really needed a relaxing weekend to sleep in.  But Ryan needed me, and I wouldn't pass on running to his side.  Then I wanted to stay with Ryan to make sure that he was okay.  But I had to place him in my sister's competent hands so that I could get back to Derek.  The doctors were holding Derek's release until I came back.  They say the first few weeks are very intense, so I want to be there to help Derek and Krystina navigate.  But I want to be with Ryan.  No matter where I am, I am torn.

Derek was told he was being discharged today.  He has been here seven months today.  It would have been poetic justice.  Oh well.  Tomorrow.  Some say it's because they wanted to give me time to get back, and some say it was because he didn't go to the Matc yesterday.  Whatever it is, tomorrow should be the day. 

Yes, things are getting better for Derek, but that doesn't stop the onslaught of stress and difficulties that seem to come out of the woodwork on a daily basis.

I'm still sitting here torn in two.  The stress on my shoulders is starting to break me.  Come on, God.  It's time to start picking on another family.  I need a break. 

Thursday, February 23, 2012

A Few Steps Closer to Release!

Seven months ago today, I received the worst phone call of my life. For days, we were in shock. We begged for even the slightest iota of information.  Things looked grim.  Every phone call revealed more bad news.  I felt as if the week was dragging as we waited for word that we could leave for Bethesda.  Once we arrived in Bethesda, my heart broke at the first sight of my boy.  Every visit from the doctor, revealed more bad news. 

That was seven months ago.  This has been a long, hard journey.  We have had good days, and we have had horrendously awful days.  Derek was lost in those dang woods for months.  We spent 53 days in ICU.  Those horrendously awful days appear to be in our rear view mirror.  In the last seven months, we have come so far.  We are climbing that mountain, and soon we will be at the top!

The last couple of days have been hectic, to say the least.

Last Thursday, Derek finally said "good bye" to his specialty bed.  He wanted to be ready for the regular bed in Bldg 62.

On Friday, the family traveled from NJ to spend the weekend with us.  They arrived around midnight.  Sean went straight to Derek's room to spend the night with him.  On Saturday, it was off to DC!  We spent hours exploring the Smithsonian Museum of American History.
We know the price of freedom...

One of the most interesting exhibits was the original flag that was gazed up by Francis Scott Key when he wrote the Star Spangled Banner.  It looks like it has been through a war, and large chunks were removed over the years as "souveniers," but it is still there.  It is still proud.  It is still our flag.

After the museum, we walked up to take a look at the Washington Monument.  Thereafter, we tried to go to Georgetown Cupcakes, but the traffic was too bad, so we headed back to the hospital.

On the way, the van started lagging.  Then it started smoking!  I told it to quit that nasty habit, but what can you do?  We limped back to the hospital, and the guys from the command center came out when they saw the smoke and smelled the stench.  They believe the parking brake might have engaged while I was driving.  The wonderful people who donated the van to us called by brother-in-law and insisted that they pay for the repair.  We will see.  I am having a non-profit look into it, and they might be able to cover the cost. 

When we returned, my sister pulled out this wonderful blanket that was made for Derek by the third grade CCD class from Our Lady of the Lake in Verona, NJ.  All of the children placed a hand print on the blanket.

Derek had some severe pain issues on Saturday evening.  He called the covering doctor for some relief, the relief his regular doctor told him he could have.  She wouldn't do it.  First she gave him some pain medication that in the past had not worked.  Then she told him to wait until after his night meds.  Then she gave him a heat pack.  Really?  Okay, let me cut off your legs and let's see if a heat pack works for you.  This is a kid who sweats profusely.  It was not a good night.  The cobblestones in DC really hurt him.

Sunday, due to the pain issues and lack of assistance on Saturday, and due to the down and out van, we hung out at the hospital and ordered a pizza for dinner.  It was great to catch up with the family.

But come Monday, we were ready to venture out a little.  I called Barwood Cab, and I was told that they needed 24 hours notice for a wheelchair van.  I broke down and called Regency Cab.  We have had prior bad experiences with Regency.  The driver who took us to the Army Navy game was .... how do I put this nicely?  Not the brightest bulb in the box?  Not the sharpest crayon in the box?  You get the point.  Then on Christmas Eve, they stranded us at the hospital when we wanted to go to dinner.  I should have known that Regency and the Cheesecake Factory would not be a good match.

I asked the dispatcher if they could guarantee me a return ride at seven.  They told me yes.  They told me that someone would be there at seven.  At seven, after a wonderful meal at the Cheesecake Factory, there was no cab.  I called and I was informed that they would not be able to get me a wheelchair van for at least an hour, and they could not even guarantee it then.

Oh, the power of facebook.  I posted that we were stranded, and Dr. Bitonti called someone at the hospital, who called me right away and started looking for a ride.  Also, Rob Kumph, an NCO in the Army, called the Command Center for them to find us a ride.

In the meantime, my sister had the brillant idea of getting Derek into her car, and then having the boys lift the 370 lbs chair into her truck.  It worked!  Krystina, Kellina and I hung out at the mall while Yvette and Brian drove the rest of the crew back in their cars. 

On Tuesday, we all trekked to the Matc for Derek's workout.  First, he had OT, and then PT.  The family really wanted to see Derek walk.  So, he put on his prosthetics and took a stroll!
It was great to see Derek standing with the other kids for the first time in seven months!

And then he had another first...
He walked with a walker!  Yes!  Next he will be using crutches and the harness and walking the track!

It was so great that Derek's family, all the people who matter the most to him (with the exception of Krystina's family and some of our extended family in NJ, FL and CA), were there to see this!  Derek said it felt good.

When we got back to the room, we had a visit from Randy Couture, an MMA fighter.
Then it was time to say good-bye, once again.  I hate good-byes.  The only good part about saying good-bye is knowing that they are in your heart and that you will see them again.  But I miss them so much.

When the mail arrived, Derek had a very special blanket sent to him from Joann Contreras Fuoco, a former CCD teacher, and her students at Fair Lawn High.

Wednesday night was the next milestone in Derek's journey - his first overnight pass.  We went to our room at Building 62.  It's wonderful.  None of us wanted to return to the hospital, but this has to be done right in order to ensure success.

Today, we went with the 10th Mountain Association for lunch at Fogo De Chao Churrascaria, a Brazilian BBQ in DC.  Oh my.  The amount of food was sickening! 

We sat with Sgt Grundy and his amazing service dog, Willie. 
"Drop some for me, Daddy?"

Back at the hospital tonight, but a weekend pass is in our sights!  Tomorrow, Saturday and Sunday, three nights, we will be in 62.  If all goes well, the paperwork will be processed for .... wait for it ... wait for it ... OUTPATIENT!!!  It's about time!  We've waited long enough!

So, here we are.  So much further than we were seven months ago tonight, when I didn't even know if Derek would survive.  We are making that climb.  We are climbing to glory.

Wednesday, February 22, 2012

Only Out For Money - The Down and Dirty Truth About This Journey

This entry is breaking my heart.  Unfortunately, there are scammers and selfish people in all walks of life.  We encounter them often and do not even know they are around us until something happens.  Please, be vigilant.  Be aware.  Be careful.

We have all heard about the emails from Nigeria or from some old lady begging us to help get a large sum of money released in return for a "reward."  We have been told to be careful giving our personal information out to people who claim they can help us.  This entry is a warning that, unortunately, I and many others around here have encountered in the wounded warrior world.  This one breaks me.

There are those WW families who hold out their hands for donations as soon as the injury occurs.  They claim that personal expenses are not paid for by the army.  They claim that the WW needs so much because he is left with nothing.  Let me tell you the truth.  But first, I am not perfect, and I am not writing this to pat myself on the back (honestly, I have low self esteem at times and tend to downplay my achievements and capabilities).  I am simply using our story, as well as others, to highlight how I have found this journey and what we have encounted thus far.

When Derek was first injured and I received that horrible phone call, I was advised that someone from the army travel department (whatever it is called, I cannot remember right now), would be calling me with information.  I received that call within a few days, and I was advised of the following:  If Derek was not able to make the flight from Germany or if his condition was grave in Germany, the military would fly me to Germany and house me at the Fisher House.  When I told them I did not have a passport, they told me I would then go first to DC and get my passport at the State Department.  They told me this would be all free of charge.  I was also advised that once it was confirmed where Derek was headed stateside, I would be flown, free of charge, to the closest airport where I would be met by a liaison who would transport me to the hospital.  I was also advised that three family members could be issued Invitational Travel Orders.  Those three family members would be issued a plane ticket, reimbursed for any other travel expenses incurred, given lodging, and given a daily allowance.  When I asked about additional family members, they said a non-profit would provide transportation and lodging for them.  When I advised them that I planned to drive to Bethesda, I was advised that my travel expenses (tolls and mileage) would be reimbursed.

I dropped everything and ran to be by his side.  Money was the last thing on my mind.

After I arrived, I was given a travel voucher to list my tolls and mileage.  Because I had more important things on my mind, it took me about a month to complete it, but not for lack of the Army's trying.  SFAC, WTB, WTU and AW2 visited constantly, at least one each day.  My son Michael never did complete his.  He has been on orders and the only thing he has requested was the lodging.  He has never filled out a form to request reimbursement for his mileage or tolls, or to receive the daily allowance.

Michael was placed on orders because I was told Derek's girlfriend (now fiancee) could not be.

Within the first few days of arriving, the three of us on orders, myself, my son Michael, and my ex, were sat down and told about the travel expenses, lodging and daily allowance.  We were also told about non-profits who could help with extended family as well as other expenses we might have.  All of this occured within the first week.

Yes, in the beginning, we were given so much information on financial matters, medical concerns, etc. that my head was swimming.  But I was also given business cards from everyone so that if I had any questions or could not remember what I was told, I could call.

Let me review what we are entitled to receive while here and while Derek is still an inpatient:  lodging for three people on orders (the rooms are also large enough for other family members who are not on orders to share), a daily allowance, and travel expenses for one round trip.  Any additional travel expenses and lodging can and will be covered by a non-profit (Hero Miles, Yellow Ribbon Fund, etc.)

Within the first month, I was told about non-profits who help with some family expenses - Walter Reed Society, Operation Homefront, etc.  Please see my "resources" tab for a list of wonderful organizations.

In addition, Derek is entitled to a car grant and a housing grant.  The car grant is for $18,000, I think.  Since Derek is not in need of a vehicle right now, we have not completed that paperwork, and I really do not remember the exact amount of the grant.  I do know that the vehicle will be modified so that he can drive it.  For now, we have a van that was donated to Derek by Bob and Karin Ruppel.  The housing grant is around $63,000.00, and it can be used towards a new home or to modify an existing home.  There are also organizations who will take the grant and build a house that meets his specifications.  There are some restrictions involved with that, and when Derek gets to that point, we will investigate them.

Derek is also eligible for social security disability and for a VA "pension" that will be the portion of his salary that they determine he is entitled to receive.  At this point, we are expecting him to be 100% disabled and entitled to 100% of his present salary.  So, going forward into the future, Derek will receive his current salary plus social security.  This will most likely not be enough to sustain him and pay his personal and future family expenses, but hopefully, he will be able to get an education and find a job.

Most of the wounded warriors are entitled to everything I have outlined above.  There are exceptions when the WW sustains what they consider to be "minor" injuries that do not result in a disability, such as a broken bone.

However, all wounded warriors are entitled to a payment from the TSGLI.  This is traumatic group life insurance and caps out at $100,000.00.

So, what is the point of this entry?  *deep breath*

I want everyone to know about all of the things that our wounded warriors and the family members can receive while on this journey.  I want you all to be aware that while we have lost so much, we also are entitled to so much.  I want you to be vigilant when donating your hard earned money.  I want you to be aware that not everyone is like us, and some will take advantage.

Now, why would the families need help?

The following examples are some, not all, of the reasons, and these usually come to light after a couple of months, not immediately.

We have limited access to non-profits that pay for our personal expenses, such as mortgage, utilities, car payments, etc.  There are some, like the Walter Reed Foundation, who will help with some family expenses, but on a limited basis. 

A lot of us are let go from our employment.  There is a Military Family Medical Leave Act that will protect employment for 23 weeks, but it only applies to businesses with more than 50 people.  While the right and moral thing to do in support of our military would be to grant an unpaid leave for as long as the soldier requires assistance, that is not often done.  Many of us on this journey have been let go while caring for our loved ones.  I spoke with a wife recently who was told she either has to return or resign.  While I understand the employer's position in these circumstances, the right and moral thing is to assist the family.  Can it really be that difficult to allow an unpaid leave of absense?

Right now, I am in the position of having to find a new employment in a terrible economy, as are many of us.  In the meantime, I have personal expenses to cover, such as a car payment, car insurance, mortgage, utilities, health insurance, food, etc.  Some of these I can receive assistance with from a non-profit.  I have three unemancipated children to support, and I do not receive child support.  My ex has refused to pay.  I did recenty hear from an attorney on his behalf to try to negotiate child support, but it has been over a week and I still do not have the proposal.  He is also not paying in the meantime.  I have savings that are adequate for now, but within another couple of months, I will be in trouble. It is hard for me to ask for help. I am swallowing my pride and reaching out to non-profits for assistance. 

When Krystina first arrived, she was not on orders.  She used her savings and her parents' financial help.  I also drove her down with me, paid for many of her meals, and allowed her to stay in my room.  Don Patterson arranged for the Marines to assist her with gift cards for a couple of months.  Finally, Derek was awake enough to terminate his father's orders and place Krystina on orders.  However, when she was not on orders, she never put out her hand and asked for donations.  She never asked me for anything.  I did not ask people to send money to her to help her.  We took care of her.

That brings me to fund raisers. 

Derek has had two fund raisers (possibly three but I will address that below), both established and run by friends of the family.  I did not ask for these fund raisers.  That never even crossed my mind.  I do not use Derek's support page (www/ as a way to ask for money.  That page is solely for encouraging words for Derek and to show him that the community is behind him.  We also use it to get the word out about non-profits, other wounded warriors, and other bits of news we think is important.

When the fund raisers were scheduled, my family stepped forward to help run them.  The fund raisers were billed as raising funds to help the family expenses while Mom was with him, as well as for Derek's future needs.  The money was deposited into an account for Derek.  Derek has asked me to allow him to use that money to pay for my expenses.  I do not want to do that unless it is absolutely neccessary.  In the event that I do use some of those funds, trust me, it will be posted on Team Derek, and I will address it here.  I believe that anyone who has donated money to Derek is entitled to know exactly how that money is being used. 

At this time, cash that was sent to us has been used to buy our meals.  Any checks that were sent directly to me were deposited into my bank account and used to pay my mortgage, and utilities.  Any checks sent directly to Derek were deposited into his bank account and are being saved for his future.

My friend, who is a wounded warrior wife, has donations that were sent to her husband in an account to build them a house so they do not have to use one of the non-profits.  A wounded warrior wife, with whom I disagree on most accounts, especially her posting what I consider to be inappropriate pictures, has not used her husband's support page to beg for money.  Most of the support pages I have seen have a link or reference for donation if someone wants to help, but the majority of the postings are about the wounded warrior's progress.  Money is not the main issue.  Unfortunately, there are some who mostly discuss donations, including one I found yesterday.

Do we need donations?  Yes.  There are certain expenses and needs that are not covered and income now and in the future just is not sufficient to cover them.  Into the future, most of Derek's medical needs will be covered by tricare, but not all.  He will also need a lot of specialty items, of which some will be provided, but others will have to be purchased by him.

In my own personal opinion, I do not believe that soldiers who sustain a mild injury and are returned to their units shortly thereafter are in need of donations, but I could be wrong.  I, unfortunately, encounted one such instance since our arrival here.  A soldier received a broken bone, was treated in Germany and sent home for two weeks to recover.  Sent home.  Not transferred to a stateside hospital.  His family did not have to travel anywhere, take time off of work, or incur any expenses as a result of his injury.  After two weeks at home, he reported to his home base to be redeployed.  Yes, he was injured in battle.  Yes, he was entitled to receive his purple heart.  Yes, he was entitled to be honored as wounded in combat.  However, it is my opinion that since he did not sustain a lasting injury, and since he does not have any additional expenses not covered by the military, he is not in need of donations.  Of course, I do not know his personal situation, but from what I saw posted on his support page, it does not seem that he has a need, but there are so many others who do have that need.  But you can make up your own mind on that one.

I firmly believe that no family should ever profit from their loved one's injuries, no matter how severe.  Unfortunately, I have also seen this.

In my own personal situation, I was advised that a company was raising money for Derek.  When I asked for that money to be transferred to Derek, I was told that it was only a few dollars raised by family and friends for this individual's and his family's personal travel expenses.  His family did have some travel expenses for the one and only time they came to see Derek.  The individual?  Not so much..  He was on orders and entitled to lodging and a daily allowance, as well as one flight.  The two additional flights could have been covered by Hero Miles.  I know for a fact that he completed and submitted a travel voucher requesting reimbursement from the army.  I do not know whether or not payment was ever received by him from the army.  I do know that he submitted his expenses to the fund raised for Derek and he received payment.  I do know that he never told us about this fund, and that my mentioning it in a previous entry was how the fund knew to contact us.  The balance of that fund has now been forwarded to Derek.  We thank them wholeheartedly for their generosity.

I know of a mother who demanded that donations made to her son be given to her not to her son, the wounded warrior.

I spoke with a wife whose family took money meant for her husband, a wounded warrior, and then denied that they had the funds.

I spoke with a wounded warrior who sent his mother home after she withdrew a substantial sum of money from his account and denied it.

I spoke with a mother who took over her son's financial affairs after his wife took off with the TSGLI payment.

I spoke with a mother who intended on using funds donated for his son's benefit to finally take the vacation she desperately needs.  Wait.... what?  Yes.  She actually told me she was looking forward to finally being able to go on vacation.  Yes, I told her I did not think the people who donated the funds meant for her to go on vacation.  Her response?  She would take her son with her, if he wanted to go, but she really needed this, and of course she would wait until her son was an outpatient.  Still wrong, in my humble opinion.

I also recently learned about a support page that is pushing a fund raiser for family who are not on orders.  They first posted a claim that as long as the soldier is on active duty, he and his family are on their own for expenses, and that they would not be entitled to anything until he was discharged from the army and was then affiliated with the VA.  That is not true.  As long as he is an inpatient, three family members can receive the benefits I stated above.  As an outpatient, one person will be listed as NMA (non-medical attendant) and entitled to those benefits.  When this was pointed out to them, they changed the story to two family members who are not on orders and in need of help.  When non-profits were pointed out to them, they became indignant and said, "Read the last post," and they deleted my comment and my friend's comment, both of which were trying to help them and giving them information about the non-profits.  It was at the deletion of the comments that I first came to the conclusion they are only out for money.  This breaks my heart.  According to them, this soldier is severely injured and will need help and the family has to have their expenses paid because the military refuses.  Yes, the soldier needs help, but the family should be taken care of by the military and non-profits.  And unfortunately, the greed I see on that page is showing us that the money will be used by the family when there is no or little need.  Of course, this is only my opinion, which is also the opinion of a couple of my friends and a few people from whom I've seen posts.

Bottom line, please be careful before you write the check.  If you have concerns or even if you want to help a broader base, post that you are donating to a specific non-profit in the soldier's name, and advise the family that they can reach out to that organization for help.  I am heartbroken that our wounded lose so much and then need to deal with greed.  In my perfect world, from where I reside on Hope Island, no one would ever steal from another, and all of our wounded would be the priority (well, not that there would be wounded if it was my perfect world, but you get the point).

I am so thankful for everyone who came out to pray for, support, and love Derek.  Those former strangers who opened their hearts and lives to us are forever in my heart.  For that reason, I urge you to be careful.  We care about you and do not want to see you taken advantage of.

With God's blessing on this Ash Wednesday, I sincerely thank you.

(An entry about our hectic weekend and the blessings of this week is coming soon!)

Friday, February 17, 2012

Making That Climb

The last few days have been full.  Derek continues to rock it out in his recovery.  He actually made it to the Matc all five days.  He did so great that his PT is giving him Monday off.  That's so awesome of her, especially considering the Matc is closed for President's Day. 

"Meg" is Derek's OT, the OT whom we have dubbed Meg (as in Family Guy) because he is part of the family now, but he is SO negative.  We do love him, but he told Derek today he only made it three days, because two of the days he came at 1300, instead of his usual time of 1000.  Really, Meg?

Derek walked three days this week.  Dr. Kim and the pups were on hand to watch him today.
Archie was off today, but Tootsie stood in for him.  Above are the three pups with Gingerbread Baby.  Did I tell you about Gingerbread Baby?  He was sent to us by this adorable first grader from Clarksville, TN.  He is having adventures with Derek, and when he is finished, we send him back with the story of his journey.  There are more pictures of Gingerbread Baby and his adventures so far on Team Derek -

Derek's balance has also improved so much!  He is almost completely steady on his new legs.  He is still in the parallel bars, but I see him in the harness and walking the track in the near future!

What is also in the near future is our first overnight pass.  That's right!  Guess who is going to be an outpatient soon?  This guy! 
Look, Ma! No hands!

It is within two weeks!  Felt like it would never come.  Now we are on the eve of moving out of the Fisher House and into Building 62!

Also, yesterday I went to pick up a copy of my orders.  I was met with a nasty lecture.  Seriously?  He told me that he wasn't going to renew my orders because I did not go to see him every week for the past six months.  He told me that when he briefed me, he told me I had to sign in every week.  First of all, he didn't brief me.  He took over in September.  I arrived July 29th and was briefed the first week in August.  Second of all, I did sign in every week.  The sign in sheet was brought to us every Monday.  He said that was for finance, not for him.  And we were supposed to know this?  Please, dude, give it up.  So, that brings me to my "lastly."  Lastly, we are living through hell.  We DO NOT need your nasty attitude lecturing us. 

Thankfully, his boss agreed with me.  I met with his boss today, and he wants to use what happened to me as a catalyst to make changes.  Yes!  Kick that nasty attitude in the rump!  Dump it in the trash!  I am sorry, okay maybe I'm not, but anyway --- we have enough to deal with without having to deal with attitudes.  As I've told people, there are only three attitudes allowed in Derek's room, and we are not allowed to take those attitudes with one another!

Medically Derek is improving.  His cholesterol medication was increased, but his numbers dropped drastically.  It is just preventative.  The night time meds are not really working, so he is working on it.  His pain is better controlled, so that makes us happy.  Now that he is off the IV pain meds (yes, he went cold turkey against medical advice), he is brighter and has more energy.  One problem is his pinky swelled up and turned black and blue and red and pink.  Dr. Kim says it looks like cellulitis (???)(a skin infection), and she prescribed an antibiotic.  Looking at it, it does remind me of what has happened to my fingers at times.  The concern is that it is on his right hand, the one he has had all the surgeries on.  So, we have to watch it carefully.

In August Derek developed a blood clot.  They started giving him Lobanox twice a day.  It is a terribly painful shot.  Derek likes it when it is given fast.  He has 10 more shots of this to go!  When prescribed, they want to give it for six months.  If the patient is released from the hospital before the six months, the NMA is required to give the shot.  Derek's last day is Thursday, Feb. 23rd.  Since he is having his first overnight pass on Wednesday, I asked if he could stop on Wednesday, so neither Krystina nor I would have to give that awful shot.  Thankfully, they agreed.  However, all the talk about it gave Derek an idea.  Last night, he asked if he could do it himself.  He did it.  He stuck himself with that awful shot.  He didn't do is 0600 dose, because he was asleep, but he did it again tonight.  Go, Derek!

Tonight, as I write this, my sister, my brother-in-law, my three nephews, and my four kids are on their way!  Yes!  I miss them SO much!  Tomorrow, we plan on hitting DC.

When I returned to the room tonight, I opened the "other" folder in my messages folder on facebook.  I just heard about it recently, and tonight was the first night I checked it.  There were so many wonderful messages in there from people I don't even know.  When I add them to the comments I receive here and the many comments on Derek's support page, it truly humbles me and warms my heart.  Our journey is touching so many people.  Your kind words of encouragement and praise really do help.  It also humbles me that some of the medical staff check in here.  When I have a tough day, like I did this afternoon, your words help lift me up.  This afternoon I slept in the chair due to another migaine. 

This is a highly stressful situation, even though we are making progress.  I've lost so much on the journey, and now that Derek is finally going outpatient, I have to fight to get it all back.  It's tragic that we watch our loved ones suffer and fight for life, and then have to rebuild our own lives.  One thing this journey shows us is who we can and cannot count on in our lives.  Derek made some tough decisions to delete people from his facebook who have not supported him through this journey.  I, too, know who has really been there for me and who gave me lip service.  I know now who my true friends are.

I know I am not alone in this journey, as much as I feel I might be at times.  I have my family, my friends, and all of you.  And you are not alone either.  Tragedy happens.  Bad winds blow our way.  How we handle them is up to us.  We DO NOT have to let it get us down.  We CAN climb to glory!  All the way!  To the top!  Hey, I'll meet you there and we'll take a picture of the amazing view!

Tuesday, February 14, 2012

Valentine's Day

Happy Valentine's Day to you and yours!  I hope this day was one of love and hope.  I don't care if you are married, engaged, single, a Mom, a Dad, a grandparent, a favorite aunt or uncle, a confirmed bachelor/bachelorette, a crazy cat lady, whatever.  Whatever your situation in life, I hope you found love and joy and hope and happiness today.

Personally, I am not a fan of Valentine's Day.  I think it's an overpriced marketing ploy, and I think if someone shows you love all 365 (or 366 as in this year) days of the year, that is a lot more important that showing love with roses and candy and jewelry on one day of the year.  A lot of the time, if a man does not get his woman the right Valentine, or send flowers, or be all romantic, she gets mad and then a fight ensues.  Or, if someone is alone on Valentine's Day, often he/she gets all depressed because he/she is reminded of being all alone.  There are so many other important things in life, and if you can find love with your friends, family, kids, whomever, be content.  Some of us are just not meant to find a partner.  I've stopped looking.  I find my love with my kids, friends, family, and my kitty.  No, I am not a crazy cat lady, she says as she coughs up a hair ball.

So, for all the lovers out there, if you didn't get the perfect Valentine but he/she remembers you on other days of the year, be thankful.  And for those of us who are single, hope you had a fabulous day finding love in places you least expected it! 

Just think.... tomorrow all that candy will be ON SALE!

What is Valentine's Day anyway?  Does anyone know how it started? 

Valentine is a saint in the Roman Catholic religion.  So, if you like Valentine's Day, thank a Catholic!  If you don't, you can add this to the long list of things we Catholics get blamed for. 

There are a couple possible martyrs who might be the original St. Valentine after whom this day is named.  One defied Emperor Claudius II and performed marriage ceremonies for young soldiers.  Claudius had forbidden young men to marry, because he thought single men made better soldiers.  Valentine was ordered to be executed for his defiance.  Other stories suggest that Valentine was executed when he helped Christians escape Roman prisons.  While imprisoned prior to his execution, Valentine sent a love letter to his jailer's daughter and signed it "from your Valentine."

Some believe that Valentine's Day coincides with his birth or death, but others believe that it was selected as his feast day to Christianize the pagan festival celebrating fertility.  That festival is called Lupercalia and is in honor of Faunus, the Roman god of agriculture.  It is also in honor of the two founders of Rome, Romulus and Remus.   No, not the two little creepy dudes from the Hercules movie.  Eventually, Lupercalia was outlawed, but Valentine's Day was still not associated with love as it is today.

During the middle ages, people in England and France believed that the middle of February was the beginning of birds' mating season.  Valentine's greetings started around that time, and the oldest known Valentine still in existence today is reported to have been from 1415.  It was written by Charles, the Duke of Orleans.  He wrote it to his wife while he was imprisoned in the Tower of London following his capture at the Battle of Agincourt. 

Today, Valentine's Day is celebrated in the United States, Canada, Mexico, the United Kingdom, France and Australia.  Originally, lovers exchanged small tokens of affection.  In England, in the 1900s, written letters fell out of popularity and were replaced by printed cards.  In the US, mass produced Valentine's started around 1840 when Esther A. Howland, known as the Mother of the Valentine, started selling her cards.  Personally, I think a written letter would be so much nicer. 

It is estimated that Valentine's Day is the second most popular holiday for cards.  2.6 billion cards are sent for Christmas, and 1 billion are sent for Valentine's Day.

There is a little history lesson on Valentine's Day.  How did you spend your Valentine's Day?  Was it all you hoped it would be?  If not, if your Valentine is wonderful on the other 364 days of the year, give the guy a break.  If he promised you a great Valentine's Day and failed, then go ahead and beat him.  I'll loan you the Derek's beater.

Speaking of Derek, he is a little romantic.  When he was a child, he told me he would give his girlfriend a wooden rose, because then it would never die.  He greeted me this morning with a big, "Happy Valentine's Day, Mom!"  And he bought Krystina a pretty pair of earrings from the Zales website. 

Yesterday, I got together with Jessica, Laura, Heather, RoseMarie, Eliza, Margaret, Jessica's two little cuties, and a couple of others to put together Valentine's Day baskets.  The items were donated by the Yellow Ribbon Fund, Operation Ward 57, the Aleethia Foundation, the Beehive (a group of ladies, one of which is a friend of mine on facebook) and other individuals who wanted to send donations.  We received candy, toiletries, stuffed animals, drink mixes, travel sewing kits, and a bunch more! 

We set up a little assembly line and put together dozens of baskets, wrapped them in cellophane, and tied pretty little ribbons on them.

Today, I went downstairs and helped get the baskets loaded up onto carts, and then we delivered them.  The purpose was to give a basket to the wounded warrior so that he could give it to his caregiver.  Since the guys are unable to get to the stores themselves, this allowed them to have something nice for that special Mom, wife, girlfriend, fiancee, whomever was there by his side. 

We had a good time passing out the baskets, and the guys we spoke with were very grateful.  Two were left in Derek's room so he could give them to Krystina and me.  He was at the Matc at the time, so we left them in the room.  We left a basket in each room where the wounded warrior was not in at the time we visited.  We had a list from our wonderful escort, Chris, who told us whether to leave one or two, depending on who was with the wounded warrior.  Since there aren't as many wounded warriors on the floor now, they went to Bldg 62 and passed them out, too.

After the baskets, I headed down to the Matc to watch Derek kick some butt working out.  He really has improved a lot.  He is getting off the IV pain meds, and we should be outpatient within a few weeks.

When we returned, Derek handed me my basket and said, "Here's the basket you made and gave to me to give to you, Mom."

The rest of the day was spent relaxing, until it came time to order dinner.  Krystina placed the order at 1600 (4 pm), and after several calls and being told they were "running behind," a nice lady brought Derek a tray.  It wasn't what he ordered, but it was food.  The problem?  It was delivered at 2000 (8 pm), four hours after we placed the order.  We were not told they were running late when the order was placed, and when Krystina followed up and called at 1700 (5 pm), she was told it was on the way.  It wasn't.  I called at 1800 (6 pm), and I was told to be patient.  We bought Derek dinner at the Wedge, because it was getting ridiculous.  Unfortunately, he is not the only patient who went without his dinner because of whatever happened in the kitchen.  I will be following up on this tomorrow.

Anyway, hope you had a wonderful day, and that every day is filled with love, hope, peace, and all the blessings you deserve.

We are making our climb to glory.  Hope you, too, climb to glory.  To the top.  All the way.  I'll meet you there with a box of those yummy Valentine conversation hearts!

Sunday, February 12, 2012

A Jaunt Around the Newseum

When I was at the Hudson Institute dinner, I met a very charming man, Shelby Coffey, who invited us to tour the Newseum.  He gave me his contact information, and when we were ready to go, I emailed him.

The Newseum is six stories of awesomeness.

The wonderful thing about the Newseum is that it portrays our history, as a nation, a country, a world, a people.  It has newsworthy events that will remind you of your childhood and bring back many memories, not only joyous, but difficult and heartbreaking, too.  Have you heard the saying that people always remember where they were when JFK was shot?  Well, our generation remembers where we were when we heard about the terrorist attacks on 9/11.  What else do you remember being newsworthy when you were a child?  I bet you can find it at the Newseum!

Bobby met us at the door.  We had tickets waiting for us, and Bobby showed me to the VIP parking.  We were then shown to the orientation video.  Outside the theater on the first floor, we found our way to the FBI exhibit.  Many of the items in the FBI exhibit I remembered when they occurred.... 9/11, Ted Kaczynski (the Unabomber), Timothy McVeigh (Oklahoma City bombing), the Branch Davidians in Waco, TX.   Other newsworthy events I remember learning about... Patty Hearst, The Lindburg Baby, the Mob, the KKK. 

The FBI exhibit had parts of an airplane, credit cards, and a police cruiser's door, among other items, all of which were found at Ground Zero.

9/11 holds special significance for me.  A dear friend lost her husband that day in the North Tower: Kevin Hannaford, Sr.  I was teaching in a Catholic school in West Orange on 09/11/01.  The principal came to the door and told me that the Twin Towers were gone, the Sears tower was bombed and Washington was under attack.  Okay, she was strange.  I asked her where the Twin Towers went, and she snapped at me, "They're just gone.  Don't tell the children."  I went back in, added a link to our prayer chain (construction paper slips linked together with prayers written on them), and gathered the children around me for to say a rosary for all who were in danger or hurting. We often gathered for prayers, so this was not so unusual for them.  That night, I learned about Kevin.

What was also interesting for me in the FBI exhibit was the Unabomber's actual cabin. 

My former town, North Caldwell, was put on the map on December 10, 1994 when Tom Mosser was killed by the Unabomber.  I remember the day well.  My ex and I were bringing the children to a Kearny Police Dept Christmas party when the Fire Department was called to the scene.  My ex was a volunteer firefighter.  I took the children to the party by myself.  North Caldwell was also put on the map as the location of Tony Soprano's home, and the show was even filmed in part there, but that's another story.

After the FBI Exhibit, we saw a portion of the Berlin Wall.  I remember stories my father told me about when he was in Germany and saw the Berlin Wall.  I also remember the day it came down.  Pres. Reagan said, "Mr. Gorbachev, tear down this wall!"  Below is a picture of the West side.  The East side has no art work.

From there we ventured upstairs to watch a 4-D movie.  We all know what 3-D is.  That's when you wear a funky pair of glasses so it looks like parts of the movie are jumping out at you.  Well, 4-D is the total experience.  I didn't think the moving chairs added much to the film, but the wind and other effects were cool, and when the "rats" crawled up my legs during the story about Nellie Bly's investigation of an insane asylum, I about jumped out of the seat!  The movie was a look into the early part of certain aspects of reporting, such as live news reports and investigative journalism.  It was very interesting, and if you go to the Newseum, I recommend you do not skip the 4-D experience.

Outside the theater were front pages from the newspapers at the time of the Civil War, including one about President Lincoln's assassination. 

There was also a wall where famous people from the Civil War were "tweeting" the events of the day as if Twitter was around at that time.

After the movie it was time to feed our faces.  The french fries and chili were delicious!  Derek and Krystina chowed down on cheeseburgers.

After lunch, we went to the express elevator to the top.  This I did not enjoy.  Anyone who knows me knows how I feel about heights.  Well, the only part of the elevator you could not see out of was the floor.  I did not like that.  Also, the center of the Newseum is open, so while you are on the sixth floor, you can look over the edge down to the lobby.  My equilibrium was all out of kilter.

At the top, we wandered around the outside terrace where there was a wonderful view of the Capitol Building.  Even looking at the picture below sends my head reeling.  I'm surprised I was able to take it!

Once back in the safety of the building, we wandered around reading headlines from decades ago.  It brought back not only a lot of my history classes, but memories from childhood.  We saw headlines from WWII, the Korean War, the Vietnam War, elections, 9/11, and so much more.

The most emotional exhibit is on the 4th floor.

They have the antenna from the North Tower. 

I have a photo of that antenna when it stood on the North Tower.  I spent a lot of time on the top of the South Tower when I was in law school.  I attended New York Law for one year, before transferring to Seton Hall, and we used to go to the roof all the time.  See, as I said above, I am not a fan of heights.  Okay, that's putting it mildly.  I hate heights.  I am terrified of heights.  I cannot help but visualize falling or being pulled over by an unseen force as I try to keep myself grounded.  So my buddy Rosie and my friends in law school wanted me to go to the top of the Twin Towers and beat that fear.  They often dragged me up there for lunch or to just hang out.  It almost worked.  I felt semi-okay up there after a while.  I just kept telling myself that those buildings were sturdy, going no where, and that they would be there forever.  My fear was so much better after spending so much time with friends at the top.  When the towers fell, my fear came back harder than ever.

Within the 9/11 section, there is an exhibit of photographs by Bill Biggart, the only journalist to die at Ground Zero.  He ran to the towers after they were hit and started taking pictures.  He died when the North Tower collapsed.   His pictures of the event are amazing.  You can see his photos at:

As I stated above, my friend's husband died on 9/11, and I found his name on the list, as I always do when I see a list of those wonderful people who perished in the worst terrorist attack on our nation.  I remember the night my mother walked in and told me that Kevin was presumed gone.  I rarely saw my mother cry.  She was sobbing that night.

There is also a short film about 9/11.  It brought tears to my eyes numerous times, and I usually don't cry, just like my Mom, but when they started talking about Cantor Fitzgerald, I lost it.  The tissues outside the theater were a nice touch.

After the 9/11 exhibit, we saw photos from the Presidental photographers.  They had such cute shots of the various Presidents with their families, pets, and generally living, as well as some yelling at aides, and going about their daily lives. 

We also saw political cartoons, Pulitzer winning photos, and a map of where there is and isn't freedom of the press in the world.

The green represents where there is freedom of the press, the red where there is not, and the yellow where there is partial freedom of the press.  It's sad that so much of the world does not have freedom of the press.  But I wonder.... why is our press as one sided as they appear to be at times?  I really wish reporters had to take a vow to report the news and only the news and keep their own personal opinions to themselves.  I want to walk away from a news report with the facts so I can make up my own mind.  Heck, I'm crazy like that.  I'm not one of the sheeple.  I do not like any news report where it is blatantly obvious how the reporter himself will vote.  When I turn on an opinion show on Fox, MSNBC, or CNN, I know what I am expecting to see.  But when I turn on a news report, I only want the facts, without bias.

We spent five hours wandering around the massive Newseum.  It was not enough time, but we saw a lot!  We will definitely be back.

Derek said he wished we had left the Newseum for last instead of seeing it first, because he does not believe any other museum will be able to measure up.  It really was fantastic.

Derek was out and about and in his chair for over seven hours today.  Yes!  He was exhausted and sore, but he did it.  Also, I manuevered my way in and out of DC without the help of my Tom Tom, that chose a terrible day to die.  Tom Tom's untimely demise left me in a tizzy as we were starting off, but I quickly recovered and we had an amazing day.

Returning to the hospital we were flooded with news of Whitney Houston.  Okay, it's sad.  I get that.  I get that she was a celebrity and her death is news.  However, why must it take over everything?  This is a touchy subject for me because Amy Whinehouse died on July 23, 2011.  I will never forget that date, because it is the day that Derek met the IED that didn't agree with him.  While I sat at home all weekend begging for even a small iota of information about his condition, every channel I turned to on TV (except Disney), as well as all over facebook, I was inundated with Amy Amy Amy.  I really didn't care.  I just wanted news about Derek Derek Derek.

 I was a journalism major in college, and I did a lot of writing. I researched news stories, and I did my senior thesis on the Lockerbie, Scotland bombing, Pan Am Flight 103. I love to write. I would have loved to be a reporter, but my life took a different turn.  So, I have to ask, why don't we see more reports about our military?  Almost every day, young men and women are killed or wounded defending this country.  We are at war.  Every day, I see broken men and women struggling to put back their lives and learn to live in their new normal.  They have wonderful, never quit attitudes, but this is hell.  These stories are heartbreaking, inspiring, and emotional.  These men and women are heroes.  They are people our children can emulate.  So many celebrities are not.  Do you really want your children to be like Amy or Whitney or Lindsey? 

If heartbreak or bad news sells, then why not show all of the men and women who have been killed defending this country?  As of the end of December 2011, there were about 2,700 coalition casualties in Afghanistan, almost 1,800 of them Americans.  How about telling the stories of our wounded?  How many have been wounded?  10,000?  More?  Why can't we tell some of the stories of our real American heroes?  Let's give our children someone to look up to, someone who they can strive to become, instead of someone who is addicted to drugs, parties all the time, and worships the almighty dollar.

There was a reporter who used to announce as part of his nightly broadcast the names of the KIA and the number of wounded each day.  That stopped about three years ago, when it suddenly became politically incorrect to discuss such things.

Okay, so this is an emotional topic for me.  I am doing this blog, managing the Team Derek page on facebook ( (along with Krystina and Kellina), and screaming from the top of the Washington Monument in an effort to get the word out to everyone about the face of the war on the homefront, the struggles of our wounded warriors and their families, and the struggles of all of our military after they come home (PTSD, difficulty reintegrating, etc.).

Finally, I believe that in this digital age where most people text, tweet, facebook, or email, "thank you" are two words that are not used enough.  I believe that if someone helps you in even the slightest way, whether it be a card, a prayer, assistance making contacts for a special project, help finding a new job, whatever, "thank you," should always follow.  So, thank you.  Thank you for all you have done to help us along this journey.  Thank you for praying for us.  Thank you for sending us cards, letters and care packages.  Thank you for talking about us to others and getting the word out about our wouned warriors.  Thank you for joining Derek's support page on facebook:  Thank you for reading my story.  Thank you for donating to Derek and the family so that we can meet our expenses.  Thank you for joining us on this journey.  Thank you for your comments and posts of encouragement.  Thank you for being you.

Climb to glory.  All the way.  To the top.  I'll meet you there, as long as I cannot see how high were are, with a jukebox so we can dance all night and celebrate our successes.

Thursday, February 9, 2012

Walking With My Wounded Warrior - FINALLY!!

This is too exciting not to shout right at the beginning.  Forget building up suspense....  suspense has been building for over six months.  So, here you go..... the big news is:

The above is the actual first step!

When we went to the Matc today, we expected for Derek to have the prosthetic for the left hip.   It is a bucket that straps around his waist.  See picture below:

We expected Mike to strap on the two prosthetics and have Derek stand in the tilt table again, but he offered to allow him to attempt walking between the parallel bars.  Derek was a little hesitant because his regular PT is on vacation this week, but because my Dad is visiting, he decided to try it. 

He stood for a few minutes to get his balance and then tentatively took his first step.  The facility pups were there to lend support and a "barking" section.

We didn't expect it to be today, and we didn't have the iPad to record it.  Krystina and I used our phone and camera, and we are trying to upload it.  Facebook is the first stop on the uploading train. 

In addition to this awesome news, we are waiting for Dr. Kim to come and discuss medication changes so we can get Derek on the road to better pain management and outpatient!  3-5 weeks away, Dr. Kim guesses.  She came yesterday while Derek was asleep, so Krystina and I aired our concerns with her.  Before any changes can be made, she will discuss it with Derek and see if he is okay with it.

He continues on the low fat/low cholesterol diet to reduce the fatty liver.  He hates it, but oh well.  Suck it up, soldier.  We want you with us for years to come, not dropping of a heart attack after coming so far.

This is a huge milestone in our climb to glory.  Walking is a big step, excuse the pun.  A lot farther to go, but we will make it!  Climb to glory!  All the way.  To the top.  I'll meet you there with balloons and streamers!!

Wednesday, February 8, 2012

A Purple Day

Yesterday was quite eventful.  The morning started with Derek's Purple Heart ceremony.

Captain Brooks from the WTB (Warrior Transition Brigade) came to present it.  We also had a full house to celebrate and honor Derek.  We had the doctors - Dr. Kim, Dr. Sam and Dr. Himmler.  We had some nurses - Katie, Emily and one I didn't recognize.  We had the puppies and their Mommies - Archie and Bobbie, and Moms Amy and Lisa.  Laura Lee came a little late.  Archie's handler Marshall was also there.  Julie from AW2 and Captain Hook from WTB.  Lt Col Mike Crumm, Derek's former nurse case manager.  Corpsman - Allen and Dennis.  Lyndsey from wound care.  Liaisons Gilmore and Lane.  OT Joe (a/k/a Meg).  Squad Leader - SSgt Jones and the First Sgt Gomez.  Lt Col Jones from WTB.  And then, of course, Krystina and me, and my Dad came down from NJ.  That's 25 people!  This is a little room!  There was lots of love for Derek.  Wish his siblings, aunt, uncle and cousin could have made it down from Jersey, plus other friends and relatives, but this was a quickly scheduled, small ceremony.

It was cancelled and rescheduled several times on Monday.  I had to fight to get this scheduled, and it was wonderful.  Derek didn't care who presented it, he just wanted it done while he was awake.  So glad it is done.
Derek and Papa
Dr. Kim and Dr. Himmler
Lt Col Crumm
The presentation

Yes, Sgt Archie sat on the bed for the ceremony.  He was great, until everyone started clapping, and then he got antsy.  He is the protector.

After the ceremony, we took Derek to the Harp and Fiddle for lunch.  It was great to get out with him.

When we returned the nurse case manager who snapped at me yesterday was standing there.  Even Krystina noticed that she exudes attitude.  She told me, "This is not going to work if you don't change your attitude."  Excuse me? You DO NOT speak to me like that!  She's gone.  Today we met the new nurse case manager and really liked him.

After that, my Dad gave me my mail from the last several weeks.  It sucks not being home to deal with things when they happen.  Trying to get unemployment going, and now I have to appear for an in person appoinment.  I will need to reschedule it, because it looks like it will be just when Derek is going outpatient, and I will still be needed here.  I'm on military orders, so it should be no problem.

Also in the mail were other things that upset me, including that the thank you cards I spent days and hours writing at Derek's request did not have enough postage!  I asked the lady at the post office if one stamp was enough, and she told me yes.  It wasn't.  The problem is that I didn't put a full return address on all of them.  I got tired writing and simply put a shortened one, so a lot of the cards will never be found.  This is very upsetting to me.

Also, the ex started acting up again. 

It never ends.  I am tired of getting kicked when I am down.  See, the problem with that is, when I am down and being kicked, I come back fighting twice as hard!

Today has been a much better day.  Derek went to Building 62 for a safety evaluation.  It was the first time transferring to a regular bed, a chair and a couch.  First time in over six months he sat in something other than his wheelchair.  And the apartment was so nice.  Two bedrooms, two full baths, two big walk in closets, kitchen, living room.  He loved it....too much.  He wants it now.  As in today.  That's Derek.  I see it, I like it, I want it today.  No!  I don't WANT to wait!  When we left, he was stopping all pain meds today.  Krystina and I are concerned about withdrawal.  We are waiting for Dr. Kim to come and chat.  A few hours later, he sees it as a goal to be achieved in a few weeks.

Things are progressing nicely.  Still having obstacles to overcome, and it's not an easy fight, but we are now moving forward steadily.  Those obstacles can be scaled, and we will make it on the climb to glory.  So, keep climbing.  Don't give up.  There is glory at the top of the mountain.

Monday, February 6, 2012

Pόg Mo Thόin

I received a shirt from the NYFD yesterday at the Super Bowl party.  On the front it says, "Pόg Mo Thόin."  If you don't know Irish, this means, "Kiss my ass."  It was the perfect day today to wear it.

When Derek arrived in Bethesda 198 days ago, his purple heart was in his bag.  Apparently, it was given to him while he was unconscious.  Was it pinned on him?  Are there at least pictures of it?  We don't know.  I was told in August by the Platoon Leader that he would get it pinned on him when he was awake and alert and knew the honor that was being presented.

That was August.

I've asked several times since then, and each time I was told it would be arranged.  I finally started really pushing for it.  I was told he would partake in the big ceremony after he was an outpatient.  At this ceremony, many guys get their purple hearts.  Derek does not want that.  He doesn't like pomp and circumstance.  He doesn't like the dog and pony show.  He just wants a private, quiet ceremony.  We were told it could happen.

It's been months.  I've been asking about it for months.  Finally, last week I said I need it done.  Now.  I might not be here in March for the big ceremony that Derek doesn't want, and if they put it off too much longer, I might be working or gone home!  I want to see him get his purple heart!  He wants me there.  I want him to get it.

So last week I made the phone calls and pushed the people I needed to push.  I was told it would be Tuesday, as in tomorrow.  I was told that we just needed to set a time.  Well, people want to be there.  I was told the time this morning and passed it along.

This morning I was told ten.  I told Derek's doctors, the facility pups and their mommies, his therapists, the ancillary people involved in his care.  I wish I could get his siblings here and his aunt and uncle and cousins, because I know how much they would love to be there when he gets his Purple Heart.  Unfortunately, they can only come on the weekends due to school.  My father, the man who was there and helped raise Derek, is trying to get down here in time.

At 5 pm I received a phone call that they were putting off the ceremony because they didn't want a Captain to present it, they wanted a General.  Seriously?  It took me two hours of "screaming" phone calls and texts to the Lt Col who called initially, the Captain who offered to present it in the first place, the liaison and the squad leader to finally get it done at 1000 tomorrow morning.  I was so stressed and aggravated by the time I got the go ahead that I was ready to quit! 

THEN I get a call at 7:09 telling me they were going to do it on Thursday when some big wig was going to be here, but they couldn't guarantee that this big wig could do it because they didn't know his schedule.  Then, I was told that someone higher than a Captain would do it, but it couldn't be done until the afternoon.  ARGH!!!!  NO!!!!!  I've already retold everyone that I told it was cancelled to that it had been reset, and my father is trying to get down and couldn't be here on Thursday afternoon, and I like this Captain who wants to do it and has been so helpful and willing, so ABSOLUTELY NO!!! 

Can you read my shirt?  It says what I am feeling.  Pόg Mo Thόin.

On top of that, I had a fight about the outpatient nurse case manager (NCM) today. 

The NCM is the one person you have to rely on more than anyone else when you are an outpatient.  When you are discharged, all of your doctors change.  You go from the inpatient team to the Warrior Clinic.  A whole new team has to learn about you and get to know you.  Derek has a heck of a lot more to review than most patients.  He has over six months of records, when most of the guys have about two months.  The only doctor who will continue with Derek is Dr. West.  He will also keep the OT and PT he has now, because he switched to the Matc already and no longer sees Sam and MJ, who were his inpatient OT and PT.

The NCM is the one who will follow all of Derek's care.  The NCM schedules all appointments and tracks the WW until discharge.  The NCM needs to understand the WW and what he can handle on a daily basis so he/she doesn't schedule too many appointments in one day.  The relationship with the NCM is a very important one.

In August, we met Derek's NCM.  Loved him.  He was very low key and quiet, but he was there.  He came to visit us every week.  Even when Derek was unable to communicate well and was really out of it, he came to visit Krystina and me and to check on us.  One day, I left my kindle at the mall when I got my hair cut.  I told him I was an idiot and would have to go back over the weekend.  A couple of hours later, he walked back into Derek's room with my kindle!  Love him!  He was so up on Derek's care and so attentive.

Unfortuately, his time ended and he is scheduled to return home.  His last day as Derek's NCM was 1/23.  *sad face*

So, who is the new NCM?  No idea.  Oh, I know her name, but if I ran into her in the hall, I wouldn't know her.  I was told she was there when Derek first stood, but she didn't talk to any of us.  I texted her last week, and she didn't respond.  Okay, it's possible she didn't get it.  I'll give her the benefit of the doubt.  I'm not getting all of my texts, so it is possible.  I texted her again today.  She responded, and then she called me.  Attitude.  I told her I was concerned that she had been Derek's NCM for two weeks and had not met him.  She claimed she had been by three times, but Derek was not there twice and the third time he said he didn't want to be disturbed.

Okay, first of all, if she was keeping up on Derek's care, she would know that he is in the Matc at the same time every day.  That's really the only time he is out of the room.  As for telling her he didn't want to be disturbed?  Derek has no recollection of that, which doesn't mean much with his short term memory problem, but he said he would never tell one of the medical staff to not bother him, so he knows it didn't happen.  When I told her, she changed the story.  She said the nurse went in and tried to wake him up to talk to her, but he told her "No."  Derek said it didn't happen.  I asked if it was before 8 a.m., and she said no.  Then it didn't happen.  Krystina and/or I arrive every morning around 8.  No one ever came in and said the NCM was there.  It didn't happen.  If it had, I would have gone out and spoke with her.

But that is so not the point.  If she did try and we weren't there, she should have made it a point to come back.  She should have made it a point to meet us, especially since we are so close to outpatient now and she has so much to learn about him.

I'm sorry, but you cannot replace someone who was top notch, the best, completely awesome and not have us expect the same from you.  The trust and confidence are not there.  And then you argue with me the first time you speak with me?  Oh, so not going to happen.  I'm sorry.  You're fired.  We want a new NCM.

So, tomorrow I will be talking to a couple of people to ensure that we get a NCM in whom we can trust.

This was an aggravating day.  Stick a fork in me.  I am SO done!

Derek had a good, relaxing, peaceful day.  He slept most of the day.  He woke up this "morning" at noon.  We had to go for an ultrasound of his liver at 3:30, and when he returned, he fell asleep again.

The liver ultrasound is to check for fatty or enlarged liver.  His liver enzymes are trending down, but they have see sawed a lot recently, so they want to check the liver.  We should have the results tomorrow.

Tomorrow, at ten, Derek will finally get his Purple Heart pinned on.  Woot!  Finally.  I am so over it, and the aggravation has caused all of us to really not care anymore, but I'm sure that will change tomorrow when the Captain arrives to pin it on.  We are glad to just get it over and done with!

More boulders to climb over today, and we scaled them!  Climb to glory!  All the way.  To the top.  After the day I had, I'll meet you there with a stiff drink and we'll toast to our success!

Super Super Bowl

Yesterday's Super Bowl was not only wonderful because it was an exciting and close game down to the last second, and because the Giants pulled it out (my sister and nephew are huge fans), but because it was an all around awesome day.

There was a Super Bowl party in Building 62, the outpatient residence facility.  Before we went over, we were asked if John Voight could visit with us.
What a nice guy!  He stayed until the end of the game.  He sat outside the room signing autographs, talking to the guys and families, and posing for pictures.  He even called me awesome.  He was really personable and cared about the warriors.  I was told that he was at the old Walter Reed last year and did the same thing.  I like to see celebrities and politicians putting aside their agendas and their personal needs and wants and actually caring about the real heroes..... our warriors.

We were also visited by a former Patriot and Super Bowl winner, Joe Andruzzi.  He let Derek wear his Super Bowl rings.  I told him, "Go Giants."  When he showed us the rings, I said, "So, that's the type of ring the Giants will win today?"  He laughed and knew I was only busting on him.
At 62, they had music and a huge television screen.  I asked someone who was running the party to help us find a table, since most of them were already full, and he led us to a table right up front.  We later found out that the tables towards the front were supposed to be the "Beer Garden," for people who were drinking.  Oh well.  We didn't drink, but we needed a big table because we were joined by friends.

It was wonderful seeing Derek interact and socialize with the other WW.  These are his peers, and these are the guys who support each other and help each other adjust to this new normal.  Most of them are wonderful guys with great attitudes.

The food they offered left a lot to be desired.  It was pretty ick.  But the company was great, and the game was exciting. 

Derek was playing around with our friends' daughter, and they were chucking Skittles at each other.  She stuck a balloon hat on his head, and he rocked it!
While there, Derek was presented with a signed Giants football, a fathead of Eli Manning, and a first edition Purple Heart stamp.

We were also treated to a live show by Scott LoBaido.  Scott is going across the country and painting flags on roof tops in all fifty states.  He painted us a flag while we watched. He is amazing.

One annoying thing was getting snubbed by a slut.  The cheerleaders who were there were going from table to table, signing pictures and posing for photos.  When the group came up to Derek, one said, "Oh we saw him before," and turned and walked away.  The other cheerleaders tried to talk to Derek, but she walked away, so they followed.  Are you kidding me?  When that one saw him last, he was really sick.  The human thing to do would have been to tell him how much better he looked.  I was not there at the time, or I would have said something. 

So, except for the food and the snotty cheerleader, we had a great time.  Derek didn't let the cheerleader bring him down.  He doesn't care about them.  He had Krystina, he had me, and he had all of his new friends.  He also had an exciting game!

We got back to the hospital at 2200 (10 pm), so today he is sleeping.  Out cold.  Had his PT kept her word on Friday and not pushed him when he told her he was tired, we might arrange to go later today when he wakes up. 

The plan for today is an ultrasound on the liver, sleep and finding out what's going on with the Nurse Case Manager.

Derek's liver enzymes were elevated.  They are now sloping down, but GI wants an ultrasound to see if the liver is enlarged.

When Derek first arrived, we met his NCM.  This is the person who follows his progress and manages him when he is outpatient.  Mike was awesome.  He visited every week, and he kept up with Derek's progress.  Three weeks ago, Mike finished his time here and went home.  We have not met the new one.  The resident said that is his fault because he told her not to push us so we don't feel like we are being rushed into outpatient, but that is so not the point.  She should have come over and met us.  She should have introduced herself.  We need confidence in the NCM, and we have none.  He is supposed to take care of this today.

This is marathon of hills and valleys.  We are charging up that mountain, and we are almost to the top.  Derek is getting better and improving so much.  Dr. West used to give him short term goals that helped him feel like he accomplished something.  For example, he told him to strive to be off the vent for two hours and not worry about being off the vent completely.  This way, when Derek actually made it off the vent three hours he felt as if he accomplished a major goal.  We are doing that now.  Staying in his chair for the entire party was an awesome goal.  It may have worn him out so that he sleeps all day today, but the point is.... he did it!  Next goal is getting off the IV pain meds.  He has cut down dramatically.  Another goal is getting the safety eval in 62.  This is where they take him to what should be his room when he is an outpatient and have him go through the motions of a normal day.  This way they can make adjustments to the room so that it is the best possible environment for him.  Once he sees the room and sees that he can manage it, it will give him encouragement.

There is no timeline in which he has to be released.  Derek is in control.  When he can meet his goals, we will move on to the next stage of this journey.

Climb to glory.  All the way.  To the top.  When we get there, let's party!