Tuesday, November 29, 2011

Another Busy Day

Exhausted tonight.  It's been a busy couple of days with the family here.  But there is no rest for the hospitalized.  Doctors start rounds at 0500, and patients get woken up.  Derek was sleepy and cranky this morning.

Not as cranky as Friday morning when a new nurse who was not familiar with him walked him.  I had briefed her before she went in as to how Derek liked things done.  She didn't listen.  She is on orientation and is working with an experienced nurse, but some things the orientees do alone.  Several of the orientees are wonderful.  We gladly work with them.  Others?  No.  This one on Friday morning was one of the "No's."

Derek had acupuncture a few days ago, and the woman inserted the needles and left.  As in left the hospital....went home.  The needles were only supposed to stay in 20 minutes.  After an hour, Derek called for help removing them.  This all occurred after we left for the evening.  I have been waiting for her for a couple of days.  I cannot wait to have a little conversation.

The phantom pain has gotten a lot worse.  Derek explains it as when "imaginary limbs try to hurt you."  The docs increased his medication to try to combat.  The narcotics were increased temporarily over the weekend to allow the new meds to work.  They have been reduced now.

Last Tuesday, urology came in late to schedule a procedure the next day.  We said no.  Friday came around and we still did not know whether they were going to do it Monday or Tuesday, so I tried to find out.  A very nice doctor from urology came up and gave us the choice.  Tuesday it was.  But.... now it is not. 

The procedure was to change the SP tube (catheter from outside of abdomen into bladder).  They like to change it every 30 days, but it can be stretched a couple of weeks if necessary.  30 days expired on Friday.  Sunday, Derek started clamping trials.  He's a big boy now!  He passed his standardized test for peeing!  Go, Derek!  Sunday, they were not happy with the results, but today he did great.  So, the procedure is stalled a couple of days to see if it can be removed completely.  One less tube.  As Dr. West says, "less of a patient, more of a person."

And it was such a busy day today.  Derek started the Matc officially.  A good PT workout is always good for what ails you!  Go, Derek!! 

And I gave blood for the Army/Navy challenge.  Go, Army!

Dr. Diego walked by when Krystina and I were visiting with Lisa, Sgt Archie and Laura Lee.  Also with us was a friend of mine from Boston - Caitlin!  I told the group that Dr. Diego had yelled at me a couple of weeks ago.  He smiled bright and said, "Yep.  I did."  I think I took him down a few notches when I said, "But who was right?"  Yep, still part of the Residents' Self Esteem Initiative.  He tried to walk away, but I was blocking him.  "I'm trying to leave but she won't let me go!"

We do love Dr. D.  He is wonderful, even if he is not Bograd.  The picture is Dr. D.  He is holding a bookmark we gave him.  I am giving him devil ears, but his head is too big and covered my pinkie!  He was yelling at me a couple of weeks ago over Derek's phosphate level and the fact that Derek did not want to take the phosphate binder because it was making him sick.  We have controlled it with diet.  So tonight, Dr. D walked in, looked at Derek's dinner, and proclaimed, "Wow.  Look at that big plate of phosphate!"  Brat.

He really wouldn't be happy with Derek if he knew what Derek wanted for dessert!  I went out to dinner with a friend of mine, and Derek asked his night corpsman for two pieces of apple pie.  When Krystina objected, he said, "Mommy said I could have one."  Yes, I did.  As a treat for Thanksgiving when his phosphate level was in the mid-4's.  Today it had pumped up to 6.2.  No apple pie.  He finally agreed with Krystina, but then he hid his hand from her and showed Garay two fingers.  Krystina was onto him.

While sitting with Sgt Archie and Laura Lee, one of the corpsmen came over and joined us.  This is the corpsman with whom I wrestle on a regular basis.  He is a pest, and he likes to tease everyone.  He was sitting on the ground and grabbed my wrist. I put him in a headlock, and we proceeded to wrestle. I called out, "Help me, Archie!"  If Lisa had let go of Archie's leash, Brat the Corpsman would have been no more.  My hero, Archie!

To hear the story from Derek's own mouth, he has started a video blog.  It is on youtube under ACauseWorthFighting4.  Here is a link to his latest.   http://youtu.be/z2o8F3F5OuE

After the upsetting day yesterday, Derek read my entry entitled "Tears Don't Grow Legs."  His only comment was that I didn't end it with "Climb to glory!"  He must have agreed with everything else I said.  Love you, Derek!

So, since Derek likes this closing - Climb to glory!

Sunday, November 27, 2011

Tears Don't Grow Legs

Today, Derek, Krystina and I were discussing Derek's attitude.  He told us, "Tears don't grow legs."  He is such an inspiration to me, and for those who walked away from him and hurt him, all I can say is it is your loss.

Yes, people are so cruel in this life as to walk away when someone they claim to love really needs them.  Wives and parents have walked out on wounded warriors, leaving them alone in the hospital.  Unfortunately, Derek is no stranger to abandonment.  I have not really addressed this before, but given recent events, I feel the need to state my peace.

Twelve years ago, when my children were 2, 5, 5, 9 and 10, their father walked out.  I begged him to stay in their lives, but he told me, "It's not a good time for me."  A couple of times after he legally and voluntarily (against my objections) terminated his right to visit with them, he did try to come back, but he never did what the court order told him he had to do, so the court denied his requests.  Once again, it was his way and not the right way, the way that would have been best for the children.

Over the last 12 years, child support was his way, not the way the court ordered.  I had to chase him many times, and eventually he took off to another state and refused to tell me or the court where he was.  He owes me about $175,000.

There was no contact between the children and their father for years.  In addition, although I tried to keep his parents in the children's lives, they, too, walked away.  They all blame me for the lack of a relationship, but a court would have enforced the relationship.  However, that would not have been necessary for his parents.  They had my phone number and address and they could have contacted them at any time.  I did send back one birthday card that was received from his parents, because Derek was about 12 or 13 at the time, looked at the return address, and handed it back to me.  He told me to send it back and tell them he wanted grandparents, not a birthday card.  I did as Derek requested.  They never tried again.  They did not call.  They did not write.  In addition, a couple of years ago, his mother added my children on facebook, with my consent.  She could have contacted them without any interference from me.  She did in the very beginning, and then went back to ignoring them.

My children did not grow up in a household with me vilifying their father or his parents.  I did not talk about him.  They never heard the story about what happened between us, even to this day.  They did not hear me speak ill of him.

When Derek was 18, his father reached out for him, in violation of the court order.  The court order stated that when the children were emancipated, they could contact him.  Derek was not emancipated, and his father contacted him, not the other way.  But I did not object and let it be Derek's choice.  When Derek told me he was going to live with his father for six months to a year, so he could work with him and get to know him, I told him the door was always open.  After two months, he ran back home because he could not stand living with him another minute.  He also could not stand to hear his father rip me apart.

Before Derek deployed, he told Krystina that if anything ever happened to him, she was to simply advise his father.  He did not list his father as a point of contact for the Army to contact directly.  That speaks volumes.

After the injury, his father showed up at the hospital.  I could have used the court order to limit his contact.  I didn't.  I could have used the court order to keep my other children away from him.  I didn't.  The children are now 17, 17 and 14.  I gave them the option.  We all went out to dinner. 

I kept it civil.

His father did not.

There were numerous issues with the doctors and his father trying to assert influence over the medical care.  I'm sorry.  I am POA.  I raised this brave soldier.  Where were you?  Right, living your own life.

A minor issue, but one that shows his character is that he promised me he would get a debit card for his daily allowance and give it to me to help support the kids, especially after we went to dinner and he saw how much they eat.  When finance came in with the paperwork, instead of a debit card, he applied for direct deposit.  He did give me a few dollars to help with the kids one time when he was here, but he refused to give me a pay stub so that we could calculate the right amount of child support and he refused to sign a Consent Order to rectify the child support account.  Once again, it was going to be his way, what he felt like paying, not what the kids needed.  I offered to give him credit towards the arrears for any payment he could prove to me that he made, but miraculously, the proof was lost.

The first few days that they were here, when Derek was still on precedex and not fully conscious, Derek's father, his parents and his brother started a campaign to convince Krystina to leave.  His brother told Krystina Derek would never walk again and would be forever confined to a wheelchair.  I cannot wait to post pictures of Derek walking.

They told Krystina that she was too young to deal with all of this.  Remember, this was the first they had met her.  They did not know her at all.  They told her that no one would think less of her if she left.  Derek would.  Derek would have been heartbroken.  They didn't care.  Derek was still in a semi-conscious state, and they were trying to convince the woman that he loved, the one person who will be his biggest inspiration to get better, to walk away.

The nurses in both the ICU and on the floor have told me that Krystina shows more maturity and steadfastness than some of the older wives who they have seen.  They think Derek is one of the luckiest wounded warriors because he has a woman who is supporting him 100%.  I wish Derek's father, uncle and grandparents had thought the same and not hurt her so much.

Krystina kept quiet for three days about the pressure.  She finally asked me to get him to back off.  I did.  I exploded in front of Building 10.  He tried to convince Krystina that I wanted her to leave too, and that I had said so.  Not only is this not true, but even if I had, I've known her four and a half years.  I think I have a different standing than people who met her the first time and had not even been involved in Derek's life.

During the fight, I pulled no punches.  I was tired of hearing him say that Derek was just like him, and he would have been a hero just like Derek.  I told him if Derek was like him, he would not be lying in that bed, because he would have run away like a coward, just like his father did.  I do not care if it was a low blow.  DO NOT hurt one of my kids.  Krystina is my daughter-by-choice.

After the the fight, they all left.  He said he was coming back two weeks later.  When I mentioned this to Derek, in front of a respiratory therapist and one of the ICU nurses, he shook his head no.  He could not speak at the time, because he was ventilated, but he got the message across that he did not want his father here.  I told him not to make any rash decisions, and to really think about that.  I told him we would talk about it in a couple of days. 

I didn't talk to him about it, because I didn't want anyone in the hospital to think that I influenced him.  I do not care what the out-laws think.  They blame me for everything anyway.  Why would they ever take responsibility for their own bad decisions? 

I sent Dr. West in to speak with him, and the result was a multidisciplinary meeting on the floor to set limits for the visit in accordance with Derek's wishes.  I told the doctors and the ICU team that I didn't care what happened, and that I only wanted what was best for Derek.  This is charted.

His visit was limited, and he took a nice Army paid vacation in DC.  He did not stay the times that he was permitted to stay.  He limited himself even more.  He did the same thing two weeks after that.  I told him he could come to the hospital up until 9 p.m., because that was when Derek went to sleep.  He arrived at his hotel at 7 p.m., and did not bother to come.

He told me the first week of Derek's injury that thousands of dollars were raised for Derek by his place of employment.  I gave him the name and address of the fund that had been established for Derek and asked him to forward them there.  He asked me if I would mind if his parents had their travel expenses paid from the fund, and I said absolutely not.  I told him to send me the bills and I would reimburse them. 

When I followed up on whether the funds were forwarded, he told me they set up their own account.  No.  Not a good idea.  Why should Derek have to access more than one account?  I asked him who had access to the funds, and why he wouldn't simply forward Derek's money to him.  He changed his story and said family and friends had donated money for his and his parents travel expenses.

If that was the case, he did not need to be on orders.  Derek had already told me he wanted to cancel his orders and put Krystina on orders.  I tried to talk to him about it to avoid Derek having to do it, but he refused.  Derek cancelled his orders, and he did not visit again.  He told me that he would be back when Derek could speak for himself.  Derek WAS speaking for himself when he said he wanted limited time.  Also, after his orders were cancelled, he asked me if he could see Derek, and I told him what Derek had said about one day.  Derek had been very sick that week and was moving from ICU to the ward, and he didn't want to be bombarded.  Derek didn't even want Krystina and I in the room the entire time.  He was just too sick.  I explained this to him, and said he could come.  How is this my fault? 

He did not contact Derek via facebook.  He did not send him a birthday card.  He did not try to call him.  For over two months, Derek did not hear from this "man."  Finally, this past weekend, after two months of no contact, he reached out to Derek with all sorts of excuses and blaming me.  He wanted to come for HIS birthday, even though he ignored Derek's birthday.  Derek told him not to come.  Why would Derek let this man back into his life after abandoning him numerous times?  After hurting his fiancee?  After all that has happened?

I told him back in August, that if he is serious and if he really changed, he needed to prove it. 

Actions speak louder than words. 

He needed to start paying child support and start meeting his responsibilities. He promised he would.  He gave me money one time.  He has not sent anything else, but he showed up here with what looked like a brand new iPad and was promising to but Derek all sorts of expensive gifts.  The one-upmanship was sickening.  Derek also told us he has a lot of creature comforts and man toys.  That's wonderful for him, but his children grew up in a single parent, single income household with very few vacations, Pay Less shoes and K mart clothing because that was what their mother could afford without child support.  If not for my mother, we would have been on the street, eating at soup kitchens.  I am not exaggerating.  I simply did not earn enough to support five children on my own and their father was the classic dead beat dad.  It has been almost two years since he has paid child support, except for the one payment mentioned above, and before that, he paid $200 to $300 per month, not the court ordered $600 per week.

I have not gotten into the history in this blog, because this is really about Derek's journey, but now it seems prudent to set forth certain things, especially since it is interfering with Derek's journey.  I've received emails and been attacked in my guestbook by people who have only listened to his lies, his sob story.  I took the high road and did not respond, but when I saw how upset Derek was today after more of his lies and excuses, I felt the need to address it.  Hopefully, he will read this and stop hurting Derek who has already been through so much.  This is not about him, but he is too selfish to realize that, so maybe by putting this in writing, he will realize it.

Derek said, "Tears don't grow legs."  Tears also do not mend burned bridges.  Tears and excuses do not make up for years of abandonment.  No more excuses.  Either man up and accept that you have ruined this relationship beyond repair or live in resentment and blame me.  I really do not care as long as he stops hurting my son.

I was not the perfect wife.  I made mistakes.  I have not been the perfect mother.  But unlike their father, I have been there.  I have accepted responsibility for my own shortcomings.  I do not blame him for my choices and my mistakes.

I did not keep him away.  He voluntarily terminated his visits with his children, and the court set up a series of steps for him to come back.  He never did it.  I did not say he could not come to Bethesda.  Derek set limitations on his visits, and Derek cancelled his orders.  He reacted like a spoiled child and refused to come back, once again blaming me.  I'm sorry, but some things cannot be repaired. 

Derek needed the love and support of his entire family, but one half walked out once again.  There is no repairing that.  Derek saw them walk away.  Derek heard from Krystina how much they attacked her.  He has not heard my story, and I will not get into all of that because the past is the past and "tears do not grow legs."  Whining about what happened and placing blame does not fix things. 

The out-laws were given an opportunity to be there for Derek during this recovery, and they elected to run away.... again.  They elected to blame me.... again.  I didn't know I was that powerful.  I didn't know I could control a military hospital....an entire facility.  I did not know that I controlled facebook and the phone lines.  Wow, I must be a really powerful bitch.

Derek is Derek, only shorter

My sister and brother-in-law came down for the Thanksgiving holiday with their three children.  The kids had not seen Derek since before he deployed in March.  There was no concern over Joey, who is 16, but there were concerns over how AJ and Eric would handle seeing Derek.  AJ is 10 and Eric is 12.

It went beautifully.  AJ was attached to Derek's side for the four days that they were here.  He begged his mother to stay longer.  Today, he turned to me and said, "Derek is still Derek, even without legs.  He's just shorter."

Kids are resilient.  They see the world different than adults, and they adjust faster.  Also, things that seem life ending to us, are nothing to them.  We should give them more credit and stop the wimpification of our youth with this "everyone must win" way of thinking and protecting their self esteem at all costs.  The world is hard.  They need to learn it when they are young and resilient.  An insensitive clod said to my friend's daughter about her father who is a double amputee and simply awesome, "When your Daddy returns to normal," and she responded, "My Daddy IS normal."  It's this resiliency that helps them adapt to this new normal.

I have often said "we have our Derek back," but what does that mean?  Who is Derek?  I have stated his funny little daily comments in here previously, and his days living in delusion due to medications are previously documented; however, Derek probably didn't need the drugs to make him say cooky things.  I am not going to repeat all of the things previously said, I hope.  If I do, I apologize.

Derek is the kid who got through high school on his personality alone.  He certainly never cracked a book.  He walked the halls in the beginning of the year with a backpack containing a notebook and a pen.  By the end of the year, he was down to an empty backpack.  He passed classes based on his smile, not his wealth of knowledge. 

One teacher wrote to me after this event in July 2011 changed our lives and said that she assigned a research paper on a media personality who had an impact on the world.  She wanted the students to pick a politician.  Derek convinced her that an MMA fighter was a perfect choice.

Derek said to me when he was young, "Did an old lady anywhere ever call baseball basketball?"  That was his way of thinking.

One day, when driving past a school, he turned to me and said, "Why are there school buses at the school?"  He was about 13 at the time.

Ryan, my 17 yr old, has a hole in his chest.  It is an indentation in the middle of his chest where it is actually sunken in.  We had it checked by a doctor, and since there are no health risks associated with it and it is simply cosmetic, the doctors do not recommend corrective surgery, because the surgery is life threatening.  Anyway, Ryan awoke one morning to Derek pouring cereal into the hole and telling him to lie still while he got the milk.  Derek proceeded to eat cereal out of Ryan's chest hole.

Derek kept a pet spider in his room.  It was just a spider he caught and fed.  I didn't know about it.

Derek also had a pet bumblebee.  It was a dead bumblebee he found and kept.

While Derek was in Afghanistan he drank two bottles of soda and got so hyper he ran around the COP in his boxers with sunscreen on his nose thinking he was a lifeguard.

When a kid who was fighting with one of my other children threatened me, he came out of his room with a baseball bat.  Not wanting him to do anything that might affect his future, since it was his 21st birthday, I refused to tell him where the kid lived.  He snuck out and had my son Ryan show him where the kid lived.  He marched the kid about a quarter mile back to my house to make him apologize to me.

When my daughter Kellina was in the backyard with a boy, he stood at the window upstairs with a huge knife.  He sliced it across his throat and pointed at the boy.  Then he took a large teddy bear, stuck the knife in its head, tied a rope around its neck and lowered it from the window with a sign that said, "You if you hurt her."

In our former house, we had a pool in the backyard.  He dragged Krystina out onto the cover in the winter and forced her to "skate" on the ice. 

Krystina and I went to Fort Drum to visit with Derek.  I asked him if there was a gas station on or close to base, because I was very low.  He told me "yes" that we would pass it.  He then tried to hand me a $20 bill.  I told him to hold it until we got to the station.  He sat back and stayed quiet all the way back to the hotel.  When I got there I asked him where that station was, and he said it was when he was handing me the money.  Really?  I was supposed to read his mind?

Also, while we were at Fort Drum, he told us he wanted to go to the Syracuse Mall on Saturday, which is an hour from Drum.  He also said that on Sunday, we were attending church with his platoon.  While we were at the Mall, he said the church was near the mall.  I told him he should have told me that in the morning, because we would have checked out of the hotel and stayed in Syracuse for the night instead of driving from Drum to Syracuse to Drum to Syracuse to Drum and then to Jersey (which is past Syracuse) all in two days time!  His response?  "We have a communication problem."  Yeah!  You don't communicate!

Derek said to Krystina, "After much observation, it is not optimum for my tasting pleasure when you put too much ice in my cup."

When he was still on the liquid diet, he said, "Hash browns are like mashed potatoes, and I can eat mashed potatoes, so I can eat hash browns."

Derek wants to live his life in a ranch style house, with an underground living space furnished with guns and a stockpile of food.  He and Krystina will be extreme couponers.  There will be a farm in back where they will milk their own cows and have their own chickens.  The house will also be completely green and self sufficient with a well and its own energy source, such as solar panels.  This is all in preparation for the zombie apocalypse.  

Derek has an awesome sense of humor that is helping him adjust to his new normal.  He has his moments when he is overwhelmed thinking about the future and what he plans to do with his life.  Today, he was having a moment thinking about all of the dreams that were dead, but then he turned around and said he wanted to own a pawn, antique and oddities shop.

Going back into his room Derek announced, "Assemble the team, I am ready for my sleeping quarters."  The nurses still talk about Derek's singing and wiggling while being changed.

Derek really has the party room on the floor.

Derek has the resiliency, innocence and sense of humor of a child.  He will do fine. 

And AJ put it best. 

Derek is Derek, only shorter.

Saturday, November 26, 2011

The Luckiest Cripple

People have said to Derek they do not know how he managed to snag Krystina, because she is so obviously out of his league.  These comments about Krystina are meant as a total compliment.  Derek's response today was, "I'm the luckiest cripple in the world."

Derek IS lucky.  He has a woman who is standing beside him no matter what.  She quit her job and put her schooling on hold in order to leave her family and everything she knows to come down here and stay with Derek and help him heal.  She stood up to people who wanted to chase her away and were trying to convince her that this was not the life she wanted and should just walk away.  Until Derek asked her if she was on orders, she did not think about it.  Money and getting her expenses paid were not her concern.  She only thought about being here for Derek.  She was willing to use her savings to support herself.  That's love.

When Krystina first came, she was not on orders, so she received no benefit from the Army and was not even entitled to lodging so she stayed with me.  Not being on orders does not mean you cannot come.  Anyone can visit as long as the wounded warrior has not placed a restriction on visitors or the medical staff and/or individual with Power of Attorney in consultation with the medical staff has not placed restrictions.  Derek has placed restrictions, but I have not.

When a service member is injured, the branch of service will provide a room and a daily allowance for expenses to three members of the wounded warrior's family.  The daily allowance is sufficient to cover some basic expenses but not everything you need while here, and it certainly does not make up for loss of income from regular employment.  But for someone like Krystina, she came here purely out of love since she was not on orders.  So many girlfriends, fiancees, aunts, uncles, grandparents sacrifice everything to be here.  Some of them would be the ones chosen by the wounded warrior if he had a say. 

Krystina could not be on orders because they were not legally married and Derek was unconscious when first injured, so he could not indicate which three people he wanted on orders.  Also, even though I tried as Derek's POA, I could not be place her on orders without Derek's permission.  It had to be a legal family member over the age of 18.

Service members are asked to fill out a "death card" with the information of whom to notify in case of death.  There is also a next of kin designation for whom to notify in case of injury; however, there is no "injury card" to the extent of naming the three people the wounded warrior wants to place on orders and have at bedside immediately, or even if there are certain individuals the warrior DOES NOT to be allowed to visit.

A friend of mine and I had discussed this problem because not only did this effect Derek, but it effected her family as well.  We also know of several other families who were placed in similar situations.  Hopefully, this is changing thanks to my friend's big mouth.

She was assured that an injury card would be instituted.  It's important.  One should have been done years ago.

Had an injury card been given to Derek, he would have selected Krystina to be on orders.  It would have been done in the beginning. 

Derek should not have had to made the decision to change the orders while he was supposed to be concentrating on getting well.  The three on orders should have been his choice from the beginning.  I told him it was no big deal, because she was staying with me, but it was important to Derek.

Derek was caused additional stress because the woman he loves was not on orders, and there was even more stress when he realized that he could not rectify it immediately, because of the medications and injuries.  He first had to be evaluated to determine if he was competent.  Once the doctors determined that he was competent to make the decision himself and that no one was forcing or coercing him into making the decision, it was done.  But weeks had passed and Derek was caused stress that never should have been.

An injury card would have avoided all of that.  An injury card would have stopped all speculation and gotten the three most important people here on orders immediately.

Hopefully, this is one positive change coming soon to a deployment center near you!