Tuesday, January 27, 2015

Real strength and true love...


Well, it has been a long, hard road but Praise God, my sister is leukemia-free and her donor cells are 100% grafted.  She has been released to go back to her home and will now be allowed to drive herself to the clinic and no longer needs a full time caregiver.   This is of course what we have been striving for but I have to admit I am hesitant on several levels.   I’m going to worry; I’m going to miss her and I’m going to have to fully face the loss of my children without a major distraction to help bring me back from the darkness.

Caring for her and getting her back and forth to the clinic have kept me out of the bottom of the closet.  I can only hope and pray that once she is home, I will stay out. 

I have found myself at times feeling sorry for myself at having to sit in the clinic where I could not cry and scream and sob in the corner when I so desperately wanted to but instead had to sit there and fight back tears and try to pay attention when I could not even think.  I did not feel that I was up to the job but God knew He had to provide a distraction big enough to keep me from going over the edge to a place from which - I may not return.  Giving in to all of it at once would have been devastating and by having to stay “present” I found small snippets of time in which to give in to the grief and fall into that deep hole but all the while knowing because I had a responsibility to her – I had to crawl back out albeit sometimes kicking and screaming.

My sister is the true picture of real strength. She amazes me the way she has handled all that she has had on her. Because the same monsters that for two cents would take me down also haunt her. She lost her family members too.  And she has struggled with the same mystery surrounding this and the same trauma that I’ve had, and she has done so on top of leukemia treatment and a stem cell transplant and she has had to bear the sadness and grief of being with me everyday and watching me cry and grieve for my children.   

I don’t know how she has done it.  She has faced some of the scariest stuff a person could ever face physically, mentally and emotionally.  Hospitalizations, two different types of catheters placed next to her heart for administering chemo, blood, platelets, various medication and fluids.  She was taking about eighteen different scary life-threatening medications, four different types of chemotherapy in mega-doses (nuclear waste in a bag I’m sure.)  It made me real comfortable when the nurses put on gloves and masks and sometimes "lead" aprons to administer it and then casually ran it straight into her veins...  She has had full body irradiation and all along the way being told about all the scary possible side effects of all this treatment: cataracts, blindness, other cancers, liver failure, kidney failure, heart failure, neuropathy, neurological issues, irreversible & fatal lung damage and much, much more.  And best case scenario --the least of what she would deal with would be extreme nausea, vomiting, dizziness, the loss of her hair, shakiness, weakness, rashes, mouth sores, loss of appetite, diarrhea, stomach cramps and a raging case of hemorrhoids!  And she had all of the above.

She immediately lost her independence.   She could not touch or be around her beloved pets.  She could not get the spiritual support she so desperately needed because she was not allowed to go to church.  She could not even enjoy the simple pleasures of going out to eat.  She couldn’t celebrate Christmas with her family or even visit with her grandchildren and she has had to leave her home of twenty years for almost eight months now and  be a captive audience to my grief.

She has faced Graft vs. Host Disease of the skin (also another of their best-case scenario issues) which has caused an itchy red skin rash all over her body, then she's had to be exposed to radiation with UVA light treatments for it which have burned her and caused her face and lips to peel while exposing her to melanoma and basal cell carcinoma.  She has had three different potentially deadly viruses, two life-threatening seizures, an emergency admission to the hospital when her platelets would not come up making her at high risk of a stroke or internal bleeding.  She has been sent from doctor to doctor to doctor.  And had to endure multiple extremely painful bone marrow biopsies with very little anesthesia, along with many other torturous tests and treatments.  And from day one –she lost all say when it came to her lifestyle or her body.  When they called with the diagnosis they gave her about 12-hours to get to the hospital and they told her, “Be there at 8:00am and be prepared to stay six weeks.”  Six weeks!

Many times the tears she thought were grief were an overwhelming  combination of the loss of my children and watching all she was facing daily along with the constant fear of losing her.

Two weeks ago as she sat with me over lunch while I was fighting back tears as I mentioned something about my children again and she suddenly blurted out: “I’m glad I got leukemia.” To which I responded: “You are crazy!”  She said, “No, really, I mean it.  I’m glad.  It really hasn’t been all that bad and if not for the leukemia, I would not have been able to be here with you every day through this when you needed me.”  


Now "that" is true love beyond measure.  That is my sister.

I thank God for her and all the great people I still have in my life.    

Friday, January 23, 2015

Regrets...


Brian, how I wish I could have just one more day with you.  How I wish I had been a better mother to you.  How I wish I could have told you how I loved you with all my heart always .  How I wish I could tell you how proud I was of you and how I admired the father you always were.  How not only me, but everyone you ever came in contact with, knew that above all, you loved your children and put them first in your life.

How I wish I could tell you how I enjoyed your sense of humor and your practical jokes and the quirky and unusual way you looked at ordinary things. 
I wish I could have let you know how I beamed with pride at your many skills that we could never figure out where you learned. I wish I could tell you how the things you knew how to do amazed me: skills on your job, skills with carpentry, woodworking, furniture making, drawing, writing and your ability to just look at something and know how to take it apart and figure out how to fix it, rebuild it or reengineer it.  There was literally nothing you couldn’t do. 
Unfortunately, with most artistic gifts comes the curse of the hardship that fostered that creativity.  You had such a difficult adult life.  I couldn’t even think about it without crying and though you certainly deserved the sympathy  – I could never bring myself to tell you how hard I thought you had it and how sorry I felt for you all the time.  I didn’t dare make it worse.  I wanted you to somehow get past it without living your life in regret and making it the focus of your life, I didn't want what ruined your past to forever ruin your future too.  But trust me, I knew you struggled.  I always knew.  The one choice you made at 17 years old forever altered the course of your life.  That one crossroad that looked perfectly normal and completely innocent turned the rest of your life upside down.

You were always such an intense child. You took everything so seriously.  You had a tendency to worry too much about everything and you felt responsible for everybody.  You couldn’t say no to anyone.  You could never turn away from anyone in need especially if it was someone you loved --even to your own detriment.  Just days before we lost you, you called asking where you could be tested to see if you could donate bone marrow to my sister.  Had it been a lung or a kidney I have no doubt you would have made the offer just as readily. 
You could never hold a grudge and were always quick to forgive anyone and take the blame on yourself if you could until you nearly collapsed under the weight of all the world's problems.  And even when things in your life went right you had a hard time enjoying them for worrying about when the rug would be pulled out from under you again and sadly even when it wasn’t, you would sometimes sabotage your own happiness yourself because you never in your heart felt like you deserved anything good.  I knew.  A mother always knows the heart of her child.  
You were such a sweet, funny, happy-go-lucky kid but as you grew up – like watching a train wreck, I watched as life beat you down and took all the joy from your life.

I still don’t know how I will live with this.  I’m still not sure that I can.  I struggle day by day as hard as I know how, using every coping skill in my bag of tricks to survive it.  And only because I know what this loss has done to all of us, and I do not ever want to inflict that pain on anyone.  But I still feel it will be a miracle if I do.  God will have to pull me close and stay my hand and give me His peace that passes all understanding.  That will be the only way.

I have seen so much in my lifetime.  I have experienced what I thought was horror and great loss but nothing could have prepared me for this.  This loss has been greater than I ever could have imagined and I know in my heart there will never come a day for the rest of my life that this pain and deep anguish will not be with me.  I pray that like I read and like others say, that it will ease with time but I know in my heart that it can’t ease much.  The sheer agony of it has felt like it would kill me all by itself.  Losing the baby hit me so hard until I thought I would just surely stop breathing and die from pure unbearable pain and overwhelming sorrow.  Yet I always knew he was just first – not the worst.  You would be by far the worst when I was finally able to even begin to deal with losing you.  But I could only take it in little snippets - one at a time - as I was able to bear it, just one at a time. 
There was just so much. 

My quest to know what happened redirected my grieving you.  I had to know exactly all of “what” I was grieving – where to even place that pain.  I had so many questions.  There was so much mystery and then the intense anger --trying without let up trying to figure out what really happened and make something make sense.

Exactly to the moment right now, 8:35PM - five months have passed since the last time I ever heard your voice.  I was tired and emotionally wrung out.  I'd spent more than 13 hours at the clinic and hospital and I just wanted to get home.  How I wish I had held you on the phone a little longer and clung to every word.  It is still as fresh to me today as it was the next day. 
What I wouldn’t give to just hear your voice one more time and just have one more day. 

I hope and pray that you are finally at peace.  I pray that you are resting in the loving arms of God.  I pray that you never have to know another minute of pain, disappointment or despair.  I hope that you have finally found your joy again and I pray too that someday so will I.  

I love you always. 

Mom

Friday, January 16, 2015

Strength...


I have had two friends in the past week make comments regarding my tremendous level of strength, as it relates to my loss.  I don’t see that I have any strength.  I don’t see that I have any choice.  Believe me if I did, you would not see strength.  If there was anything I could do any perceived strength anyone thought I had would quickly crumble as I begged and crawled to do what ever it took to get them back. 


Though I do not see it as the truth in this case, on some level it does not surprise me. I think in many ways it is the trait I most strive to portray. 

It appears in considering “strength” that I have a lot to say on the subject. Where did it come from? What does it mean?  Is it always necessarily a good thing? 

The strength I propose to portray is a direct result of my childhood.  Weakness in my daddy’s household was not tolerated.  My “strength” if you choose to call it that --was tried by fire almost every day.  Much like a predatory animal --he could literally smell fear.  So weakness in any form was a danger to my very life and the lives of my younger siblings.

We were raised in an abusive, alcoholic home.  My mother, when sober, was the picture of strength and determination.  My father admired that in her and demanded it of the rest of the world and most especially in me as the oldest. 

I was expected to stand up and take whatever he dished out without shedding a tear or showing even a hint of fear.  Any display of weakness brought his personal demons front and center.  He made a concerted effort to sharpen and hone what he called “toughness” in me much like a grinding wheel sharpens an axe.  He put me in terrifying and life-threatening situations to see how I would react without regard to the outcome should I not perform as he expected.  For instance, dropping me in a lake in water two feet over my head and calmly watching as I swallowed a gallon or two of lake water --was his version of "teaching me to swim" or putting me on a huge piece of “running” heavy equipment at ten years old and jumping off leaving me to figure out how to stop it before it plunged headlong off a steep hill mere yards away; or letting me at seven years old steer the family car with everyone's lives depending on my “ability” on the icy snow-covered mountain roads of Alaska.  Would that make you tough -- if you live through it – you bet it would. 

I endured not only physical abuse but mental and emotional abuse that for me was far worse.  I started out as a squeamish little girl with a tendency toward throwing up at the slightest provocation and I thought I was going to literally die when Daddy called me in from playing demanding that I sew up a large gash in his hand with my mother’s sewing kit.  Now he was tough.


Beloved pets were choked unconscious in front of me then tossed aside for dead.  And I watched my baby sister, crippled from polio, be beaten for crying because no one would help her out of her wheel chair and the one and only time I ever stood up to him was when he slapped my baby brother so hard in the face that his two tiny teeth went through his bottom lip. 


Many times I cringed in guilt unable to do one thing as my mother’s blood-curdling screams filled the house as she was locked in the bedroom and beaten bloody.  The one time I picked up the phone to call for help fearing he would actually kill her I was stopped dead in my tracks at the sound of the hammer being pulled back on the loaded .38 caliber pistol being held to my head. A family game of Rook took a weird turn one night when he calmly announced to everyone at the table that he was going to kill me.  Knowing him as I did, I wasted no time asking "why" I just grabbed my 8-month old daughter and took off running as shots rang out behind us.  Life was interesting around our house and I learned early on that “strength” or at least the appearance of strength was a very necessary survival skill.

Strangely enough people take that appearance of strength to mean that I do not suffer like everyone else; grieve like everyone else or feel pain like everyone else.  They assume that I am easily capable of handling anything life throws at me and therefore have no need of help, rest, or comforting. 

What it really means is that I am human just like everyone else but I struggle with my needs alone, bear my grief in silence and cry in a puddle in the bottom of my closet.  And as for handling what life throws at me – what choice do I have?  Against my better judgment – I just keep waking up.

What they might never guess is that the constant “portrayal” of strength is just like when I was a girl, only there to mask any appearance of my true weakness and vulnerability. 



That appearance of strength though makes it difficult for me to admit that I need help or accept the comfort I need.  I have been conditioned to stand tough and never admit that I can't do anything.

That alone makes it difficult I'm sure for others to give me the emotional support I need because on the surface I appear stronger than they do.  And I know this because even in my weakest, most vulnerable moments as I am facing the greatest series of losses one could ever imagine.  When I am barely able to even hold myself upright or put my shoes on the right feet --people still without blinking an eye –tend to lean on me? 
At the lowest point in my life when I wonder how on earth I am going to live through this and then why I would even want to --a friend calls to complain to me about what a difficult time she is having with her emotionally troubled daughter.  Another couple confides to me all the trouble they are having with their adolescent son.  And still another calls seeking comfort because he is discouraged and burned out on his job.  All within weeks of the most horrific loss one can suffer; they are calling on me for comfort and support since I "seem to be doing so good”. 

So my strength is actually the cause of my feeling both overwhelmed and emotionally abandoned?

I am learning though through this great loss how to be human; how to be as strong as I am able at that moment which most days just means putting one foot in front of the other and doing what I absolutely have to do.  I am learning to admit my vulnerabilities and accept the help and comfort of others.  I am learning what it feels like to openly cry and even scream in front of others albeit right now just a certain few. 


I find it odd, how in letting my weakness show more than I have ever allowed myself to do, I feel I’m being stronger than I have ever been. 

Tuesday, January 13, 2015

The Project


 Brian always loved a project and he had always wanted to build his own home.  We were going to give him an acre of land so that he could do that and he wanted a builder to come in and get it dried in for him and then let him take it over and finish it a little a time as he could pay for it so that when he got it built it would be paid for.  We found him a suitable acre on the other side of our property and called a builder he quoted him $30,000 to get the foundation laid and get it dried in.  At the time, there were hundreds upon hundreds of foreclosures in the area and many were in very bad shape.  Some could be bought for just a little more than it would have cost to get a small house dried in by a builder.  Donald and I decided if he was in any way interested in something like that – we would get a home equity loan on our house and purchase one and let him do the renovations.  I told him “By the time you get through with some of these houses you will feel like you built it from the ground up!”  We set out to find one that was in poor shape “cosmetically” but in a good location and had a good workable floor plan and no big money issues.  We found exactly that and closed on the house right after Paxton was born.  

The house was a wreck!  But I saw potential.  I just hoped and prayed they could.  

I knew what Brian was capable of but Kara did not and I wasn’t sure she wouldn’t just walk in and either burst into tears or walk right back out.  But she surprised me as she always seemed to do as she just walked into that ridiculous mess and started making plans for how they would “paint this a pretty color gray and put an island right here in the kitchen and we can make that little room downstairs into an office”.

Brian and Kara were so excited until they could hardly wait to get started on it although the baby was newborn and Kara was fresh out of the hospital she wasted no time in diving in paint brush in hand. 

Oh my goodness that house was a disaster.  It had sat empty for quite some time and had been vandalized multiple times apparently. There were no less than 150 holes in the walls and doors.  There was no flooring at all just plywood sub floor.  Half of the kitchen cabinets were missing, all of the appliances stolen, pieces of baseboard ripped off with a crowbar leaving huge holes in the wall where there should have been baseboard.  The living room had cathedral ceilings one main wall painted 20 feet high in red enamel!  The master bedroom had a beautiful tray ceiling and bay window and the entire thing was painted in the Georgia Bulldog colors of red and black – even  the ceiling. 
      
The master bath had all of the fixtures ripped out of the garden tub and holes the size of saucers in the wall over the toilet where a cabinet had literally been ripped off the wall.  Not one single room was even remotely livable.  Every door in the entire house needed replacing.  But the house had good bones and no real money damage.  The roof was good.  Miraculously, the heat and air system was intact and operable and the copper not ripped out of the electrical box.  There were no termites.  No plumbing problems.  No foundation problems and it sat on a full acre of very pretty land that backed up to a large tract of woods. 

Brian and Kara worked night and day priming, painting, laying wood floor, installing custom tile in the kitchen, all new oak cabinets, new counter tops, new fixtures and appliances, and all new interior doors.  He refinished the steps going down to the basement and they were stunning.  He even built a custom-made baby gate to match the stair rail and spindles.
Brian's baby gate