A Little Back Story

Someone told me today that she was sorry last week was not what we were told, and that I deserved a Caregiver on the Year Award.  I am very appreciative to her for saying that, but the truth is, that would not be an easy award to give, and I don't think I am deserving, at least not me alone. 

I think anyone who has given up his/her own life to be a caregiver for their loved one is worthy of such a distinction.  I have seen parents, wives, girlfriends, drop out of school, quit jobs, leave other children, etc. just to assist their injured loved one.  They do it without complaint.  They do it out of love.  They work together with the medical staff and other patients' families, standing up and screaming when things don't go right, but doing so respectfully. 

Remember, there is a right way and a wrong way to take someone out!  I know I haven't always done it the right way.  I am emotional and sometimes jump too soon, but I always try to be respectful.  So many caregivers are here advocating for their loved one, and not looking for anything in return, except a healed hero.  Then there are those who not only advocate for their own loved one, but try to make changes for the good of all of our heroes.  I know one in particular who is fighting hard to make changes, and I jumped on her train to help as much as I can.

Of course, there are those in this life who misuse their loved one's injuries as a way to draw attention to themselves or those who cause strife and drama and are only out for themselves and their loved one, and be damned all others.  They publicize inappropriate information and photographs without regard for the dignity of their loved one.  They rub the medical staff the wrong way, and they file complaints about other caregivers that are unwarranted because they are simply jealous (no, no one has filed a complaint against me.... at least not that I know of).  Unfortunately, you meet idiots everywhere.  My response to them?  Talk to the hand because the ears went home.  I have no time for people who are selfish or attention whores.

Therefore, Caregiver of the Year?  The field is so full of awesome caregivers that it would be impossible to choose just one.

Today, Krystina and I wanted to get our hair cut.  We decided to go to Wheaten Mall.  Derek wanted to go with us.

His shirt is a TS original.  It says, "If you keep staring they may grow back."  T also has other shirts that say, "Combat Wounded Marine:  Some Assembly Required," and "I had a blast in Afghanistan."

We first had lunch at Panera.  On the way in, a nice man jumped up and opened the door.  After lunch, we were approached by a mother and her four year old son, Zach.  Zach had been learning about wheelchairs, and he has a card on his Cheerios box that he wants to send to a soldier as soon as he finishes the box.  His mother thought it would be a good learning experience for him to meet Derek, someone in a wheelchair and a soldier, so he would know the type of person to whom he was sending his card.  He was so cute!  He shook Derek's hand, and Derek said, "I'm just like you, except I have no legs."  Zach was amazed at the story about the robot legs.  They then gave Derek a gift card to Panera.

Yes, he received a lot of stares, but people were not rude.  Let's face it, it's not every day you see someone rolling through the Mall with no legs!  Okay, maybe around here it's a little more common, but still, most people do not encounter this regularly.  So, people stared.  But they moved out of his way, and they were respectful.

Derek was up for over four hours.  He was in a bit of pain, but he did it.  Tomorrow, we have the Super Bowl party at 62, and there are supposed to be some surprises.  Hopefully, he will last and not suffer!  The pre-party is from 12 to 4, and then the party starts at 4.  We are going to try to make it by 3, so that we get to enjoy both parties.

When we got back, Derek had a little fit over his diet.  It's really not fair.  He just got off the low phosphate diet, and now he is on a low cholesterol diet.  He is only 22 and should be able to eat whatever he wants.  But he can't.  High tricylcerides are restricting his ability to enjoy whatever foods he wants.  And he is upset.  With reason.  And Krystina and I are the bad guys when we tell him he cannot have the big bowl of cholesterol for dinner.

Is this hereditary?  We don't know.  Derek no longer has contact with his father's side of the family (his choice), and his biological mother has been out of the picture for twenty years.  The doctors have to treat him like they would treat any adopted child with no link to family history.  It should not matter, because the treatment should be the same.

So what is the history of our family?  People have asked me about the past.  I don't like to talk about the past though.  I usually just shut it off in my brain and go on with life.  What good does it do to relive the past?  None.  Except maybe when a psychiatrist wants to probe and blame everything on childhood.

I am only going to address a little of the past at this time for a couple of reasons.  (1) This story is not limited to only our family.  I have heard so many similar stories.  It's sad that so many of our WW have to deal with family issues on top of health issues.  (2) If I can help just one person by telling this, or if someone out there reads this and knows of a way to help me, then it will be worth it.  (3) I am really dealing with a little slice of hell right now, and I need to vent a little.  (4) A little past history on the family might help you relate to us in a different way --- hopefully a better way.  Every family has problems and situations that are not.... easy and comfortable.  Every person is different.  Every person has his/her own issues.  We cannot compare ourselves to others because you really never know what is really going on in another person's life, even if you think you do, and we all have our own crosses to bear.  Maybe after this, you will have a better understanding of some of my crosses.  They are not heavier or lighter necessarily then yours, they are just mine.  God gives us what we can handle.  Sometimes I think He messed up with me and gave me too many heavy crosses, but somehow I manage.

I am not going to bad mouth or vilify anyone.  That is not my intention.  I am stating simple facts that can be verified with documentation.  If you want to stop now, please do.  If you want to know a little more about my crosses, what is causing me to lose sleep at night, and the formation of our family, welcome to the night's ventation.

When I met my ex in June 1991, I had Michael and he had Derek.  Derek was living with his biological mother in Virginia.  Michael was 2.5 and Derek was 18 months.  My ex was a US Marine and was in NYC for the Welcome Home Parade in honor of the Desert Storm heroes.  The first Christmas after we married in 1993, we decided we wanted custody of Derek for reasons that do not bear repeating at this time.  I had fallen in love with Derek the first day I met him, and I already felt as if he was mine.  My ex had adopted Michael in August 1992, and then we went for custody of Derek in the winter of 1992-1993.  One year after we were awarded custody, I adopted Derek.  From the day I met him, Derek was in my heart, and I am so grateful God brought him into my life.

I am not going to throw mud and bring up the intense history of what happened in getting custody of Derek, in the adoptions of my two oldest boys, and then in my eventual divorce, because it really does not matter.  What matters is that Derek was finally officially mine, and we were a family.  We added three more children.  All surprises.  What can I say --- I'm the 1%!  But I love each of my children and would not send any of the five back for anything in the world.  I thank God for my five greatest blessings - Michael, Derek, Kellina, Ryan and Sean.

I do not regret my children.  I regret that they grew up without a father.  I regret that I was not smarter in my selection of a life mate.  I try not to live my life with regret, so I do not dwell on it, and I simply make sure I do not repeat the mistakes.  For this reason, I have rarely dated since the divorce.  I don't want to choose someone who will not be good to my children.  I also am so overwhelmed with full-time parenthood with no benefit of weekend visitiation that I don't have the time or the energy.  Would I like a good man in my life?  Sure.... if I happen to trip over one on my journey.  So far, I haven't met one worth spending any real time with.  But I am not looking, so if I do meet someone, it will be by chance.

Almost 13 years ago, my ex moved out - June 23, 1999.  I begged him to just be a father, and his response was, "It's not a good time for me."  It's never been a good time.  He rarely saw the children over the next several months, and eventually, he voluntarily terminated his right to visit.  He did try to reinstate his visits after that, but since he did not do what the court ordered him to do, his request was denied.  He didn't do it the right way.

After Derek turned 18, he contacted Derek.  Derek had a relationship with him, and since I was not part of it, I am not going to comment about it.  I only know what Derek told me.

After Derek was injured, my ex came to the hospital.  At this point I was faced with enforcing the restraining order or allowing him access to not only me, but my other children, who had not seen their father in 12 years.  I decided to be cordial, and welcome him in.  We all went out to dinner several times.


But then things deteriorated.  Of course, this is my side of the story.  He will probably tell a very different tale.  There were problems in the hospital almost from the beginning.  The fact also remains that he stopped coming.  Derek terminated his orders and placed Krystina on orders, as it should have been in the beginning, and he did not visit after that.  If he says it was because of me, there was nothing stopping him from writing to Derek, emailing him, or contacting him on facebook.  I hate when people play the blame game and do not take responsibility for their own actions.

Also, I know he tells people that he pays child support, but he does not.  He only owes more than $175,000.00.  It has been almost two years since he last sent a payment, with the exception of a small amount of cash that he gave me in September in the hospital, and even before then he paid at best 25% of the ordered amount.  He sent me an email recently claiming that he is afraid to pay through the court because they lose payments.  I worked for that system.  If they ever misplace a payment, it is easily accounted for once proof is provided.  I've asked him for the proof that he paid, but he never sent it.  If he sends it, I will help him rectify the arrears and find my money.  I told him all he had to do was show a cancelled check or track a money order.  He has not yet.  He also has not sent a payment.  I gave him my home address, but I still have not received a payment.

Am I angry?  A bit.  But I am more hurt than angry.  I have children who, if not for the kindness of my parents, would have had nothing growing up, including a place to live.  I have three children who still depend on me financially.  I have a child who is severely injured.   I have my four other children at home whom I am away from.  I have no income and no way to support my children.  And their father refuses to help. 

If he reads this or someone close to him reads this and gets him to start making payments, I would be very grateful.  If someone reads this and has information on employment for me, I would be enternally grateful.  I'm an attorney in NJ with 18 years experience.  I would love to get into patient advocacy.  I even looked into joining the JAG Corps, but I am a few years too old.

I have a father for my children who refuses to support them, so if anyone has any ideas, I am listening.  The problem is he is out of state and Tennessee will not enforce the order without him appearing in court.  He refuses to appear, so my children suffer.  The UIFSA laws really need to be changed. 

At this point, I am facing losing my house.  I am getting desparate.  He told me he wants child support based on his income.  The support that was established is based on his income 10 years ago, the last time he submitted income information to the court.  I told him to send me a pay stub and I would have child support recalculated.  He refuses. 

There is so much more I could say about him.  But I won't.  Because it doesn't matter.

Derek is getting better.  Finally.  But I am faced with finding a job in a terrible economy.  I am faced with still being away from home and away from my children, my family and my friends.  I will be back, hopefully within the next two months, but if I find a job in the DC area, I will bring my children down here.  Either way, unless I find a good paying job ASAP, I will probably end up selling my house.  I don't want to, but I cannot lose the equity I have.

This situation is not solely mine.  I met a parent the other day who lost his job because he has been his son's NMA.  Although I found him loud and a bit obnoxious, he is staying by his son's side and lost so much as a result.  I spoke with a mother who has been by her son's side for almost a year.  This has caused such a strain on her new marriage that she is now filing for divorce.  I was talking to a mother the other day who was told she could take whatever time she needed from her job and that they would work with her, but then lost her job when she was here three months.  I spoke with a woman tonight whose husband in here.  She left her three young children with her oldest daughter.  She had to sell her house and move her family into a small apartment.  I spoke with a mother the other day who is trying to collect child support from her dead beat ex.  She is filing in MD to domesticate her order so she can have it finally enforced here.  I wish I could do that, but my ex doesn't visit any more.

What I am saying is that we caregivers have an awful lot on our plates.  We have so many regular day things pressing on us and churning the stew, and then we add a pinch of aggravation with inconsiderate people around us, a dash of medical personnel who are not up to par, a tablespoon of family drama that should stay in the freezer, a hint of feeling overwhelmed by the new normal, a cup of missing our family and friends from home, a sprig of broken promises from people we thought would always be there for us, and a side dish of losing our jobs.  This does not make for an appetizing meal, but given what they have to offer us in the hospital galley (the only affordable place to eat), no wonder we have indigestion and insomnia!

But this shall pass.  We will all get through this.  We might not be in the same financial position as before, and we might have lost some friends along the way, but we have new opportunities, new friends, and new experiences on this mountain to the new normal.  Climb to glory, friends and family.  Thank you for being there with us through this journey.  Although I have been disappointed with some people who were previously in my life, I have a new group who are supportive and caring, and I thank God for each and every one of you.

Climb to glory.  All the way.  To the top.  The very top.  I'll meet you there ... and we'll toast to the future.