Wednesday, April 13, 2011

#60 - Sticks and Bricks SOLD

Any illness can create changes in a family, whether minimally or completely invasive, it can make itself known. Addison's or any other illness may have changed your own family, it hugely changed mine. Back in 2001, I was so ill and had been deteriorating for so long, without a diagnosis, that my condition affected many things in my family. I had been running a successful litigation support business for nearly a decade when Addison's hit my body. One thing is for sure, if you cannot lift your head off of a pillow to eat dinner, then you surely cannot run a company.

I had savings and residual income that helped for about six months after I was no longer able to work, but my bad health brought expensive medical costs with it. The doctor visits, medications, tests, hospital stays...all of it added up significantly. For months, I was going to different doctors and having tests run almost daily.

I had gone to untold doctor visits and had been admitted to the emergency room countless times and each time we found more money leaving the bank account that I was no long able to replenish, and I still did not have a diagnosis. My husband was forced to take all his vacation, comp time and sick time just to help me through the extended horrible time when my body was dying - from a rare disease that was repeatedly missed by too many doctors and too many teams of doctors.

Thankfully, my mother entered the picture in a big way. Talk about a life being changed by illness...after my husband's time off ran dry, my mother set aside everything in her life to take over taking me to doctor after doctor. She helped with my daughters and unselfishly gave her time, her energy and her voice to speak for me when I was simply too weak to even talk. She became my champion, in spite of her own challenges. For, you see, my mother had been "crippled" at five years of age by Polio. Her right leg was fully braced, it had also been surgically altered by rods and pins, her foot was completely fused and unmovable. The brace attached to her specially designed shoe and ran up her leg to her upper thigh. This leg would not support her without the brace. Her left arm was small and paralyzed, the hand had fingers that would not work. She could hook her car key ring onto her thumb, but the hand was incapable of griping, moving or bearing weight. The arm was not even in socket. It hung out of socket permanently and quit growing at a young age with muscle atrophy further reducing its size. My mother spent a year of her childhood in an Iron Lung. If you don't know what it is, be glad. But, my mother defied all the odds and survived contracting the Polio virus at a young age, but it left her body ravaged and forever changed. Still, my mother pulled her strength together so that she could help her daughter --- my mother flat out told me that she could see that my body was dying and we were going to go through "hell and high water" to prevent the end from coming so soon. My mom was beautiful.

Without an answer to my body's inability to do normal things any longer, things were spinning out of our control. The long months of illness took a  massive toll on our family. My daughters were young and needed their mother who could barely get out of bed. I needed to be the kind of mother who didn't hit the sheets until my mothering moments had been fulfilled for the day, in perfectionist style. Yes, I had been an over-achieving perfectionist and this would be something else I would find changed after becoming ill. It's as if God took me in his grip and forced me to just stop. Addison's brought everything to a complete halt.

I had been the kind of mother who did everything, I mean everything. I packed their lunches, drove them to school, picked them up from school, and I took them to their dance lessons, gymnastics, basketball practice, drill team name it, I was driving. Plus, I ran a hopping business and managed to keep the house virtually perfect with a once per week maid service to ease my disinfecting compulsion. Life was always chaotic, yet "normal" and with a scheduled flow. We all thoroughly looked forward to our Sunday in church as a family and we served as Sponsor Parents for the nearby "orphanage" of children who were Wards of the State of Texas. I cannot even count how many children shared our home with us. Just as a divorced parent's schedule might be, with Wednesdays, every other weekend, holidays and summers, we shared our home with a child in need. The kids at the Harbor would ache to come to our house and I wanted to be able to take them ALL home, but we did our best. We did our part to make a tiny dent in the life of children who should never have to face such challenges. Life was meaningful, fulfilling and awesome. Then, my body got sick and all of this went down the drain.

My incredible husband and his two beautiful gals in Kemah, Texas on the Boardwalk around the time I had been diagnosed with Addison's and began treatment. I believe this was our first "real" outing since I had been very ill. My meds gave me a miracle.
 My husband was great, but there was no way he could've done all I did for one practical business had always allowed me to have flexible hours. Don't get me wrong, I worked at least 50 hours per week and that was FOCUSED, rapid-fire-level work. My business practices and dedication defined the word "productive." However, my schedule included the almighty power of flexibility. I could do part of my business on the cell phone while waving at my daughter as she attempted a back-flip. I could wake up at 4:00am and have major, immediate tasks completed for my law firms before they opened their doors for the day. But, my husband, as a Deputy Sheriff, had little flexibility in his regimented, structured schedule.

When I became ill, the stress upon our family was tremendous, my husband became exhausted and emotionally drained from trying to take care of his young wife who was clearly very ill. Too often, he would go to work worried, drained and no end was in sight. The only end we could see approaching rapidly was my death.

My husband's exhaustion was very concerning because our daughters needed him more than ever and we had another area of concern. Most of us could go to work tired, not feeling well and we'd manage to make it through the day, but he carried a deadly weapon and worked with the most heinous criminals known to man while being in charge of the safety of innocent people around him. We knew that it was imperative that he wake up and be rested enough to be alert, ready to act and without impaired judgment from the exhaustion and stress of our situation. This was a tall order. Therefore, I did my best to do everything possible to not interfere with his sleep. I've not always been successful, but this has definitely been a priority.

About six months after I became ill, the emergency savings had disappeared, the medicine bills were mounting and without the two-income family status, we were simply unable to continue living as we had been living. Fortunately, we never really used credit cards, so we did not have that kind of debt, but we needed to make extremely difficult adjustments. We needed to sell our house before it was an involuntary move. My parents asked us to move in with them so my mother could also be more involved with my daughters while I was so sick. I initially mourned this decision because of how it would impact my children. I was already losing everything I'd worked so hard to gain, but I did it all for my children and now they were going to be suffering because of my illness.

The guilt I endured was torturous. I felt worthless. I was the direct source of my family's sacrifice and loss. I couldn't even do the most basic of things...How could I stop this destructive boulder from barreling us over? I was trapped in my body and in agony as I watched my life, my husband's life and my children's life disintegrate.

They loved me, but it didn't make me feel any better as I watched my daughters pack up their belongings. I knew they were terrified by my illness and to top it off, all stability and childhood comfort was being yanked from under them. I felt burdened as my children said goodbye to their neighborhood friends; I even let them have a party. I tried to make it a celebration. We would not leave our house holding onto the devastation. We would leave it there, the best we knew how.

But, my brave girls left their schools, the rooms they had decorated as they had wanted, the bike paths they cherished, the little store tucked in the middle of our tight neighborhood that had management who would run a tab for the girls when they wanted to go with friends to buy candy or a soda...our safe, predictable, lovely home was now going to belong to a elderly couple who had re-discovered each other in retirement age, so they divorced their long-time spouses of approximately 40 years each so that they could act like children and marry each other. My house that had been so full of children was now going to be lived in by a couple who had been disowned by their respective children and grand-children. Everything felt "off.".

The very nice treehouse/clubhouse with
tire swing and slide that the new owners wrote
in contract to have dismantled and removed.
My youngest daughter had a room with custom book-shelving that made an arch around her bed...all of her precious belongings and favorite books lined those shelves. After we put our house on the market, we immediately had this elderly couple come for a showing and they began raving about how this was definitely their house. Of course, I was not always able to leave for the showings because of being so ill. It was a fact that any potential buyer would be forced to work around...the sick young woman would most likely be in the house. This couple was determined to buy our house. They flat out told us that they would do everything necessary to shut out all other interested parties because they must have our house. It was a huge blessing, but things had progressed so quickly.

I had imagined having time to adapt to the decision to sell. I thought it would take about three months. Nope. We had a contract nine days after the sign had gone in the yard. Then, during the buyer's second showing, they stood at my youngest daughter's bedroom threshold and began discussing how the first thing on their list was to bust down all the shelving. They discussed how no room would reflect a child because those days of their lives were over, so each room would be a reflection of themselves and only themselves. My daughter's shelving would be torn out, my heart sunk. Yes, it was a business transaction, but this was also personal. Their plans for our house was a harsh reminder of what was changing in our lives as a family.

My daughter in her favorite reading spot in the room she had to leave behind.
I will write more about this later. It is very difficult to go back and remember these times, but I want others to know that hard times may come, but your worth is in more than sticks and bricks.

My daughters will also be writing their own versions of these times. I am hoping that the heartfelt sharing of how illness can affect a family will help others to know that they are not alone in their struggles. I didn't talk about all of this when we were going through it because I didn't want people to know the reason for the move. I didn't want to admit to the neighbors five houses down that I had been so very ill, the entire ordeal was painful and embarrassing. I didn't have the energy for questions. I didn't want to be seen as "weak." This stubbornness would be another mental and emotional block that would have to be torn down, part of it still lingers today. I am definitely stubborn, but maybe that has helped me more than I know. My husband is incredible because he actually LOVES the stubborn side of me, as much as it irritates him. It also makes his heart go pitter-patter, maybe too much and for that, "I am sorry sweetheart!!"

The love of my life.
More difficulties were ahead. More changes. More sacrificing. More tension. More adaptation. But, then we all experienced a "more" we had not expected...we all became more bonded; we each gained more emotional strength than we could have imagined; my children became more compassionate and wise beyond their years; my love for my husband grew deeper and more passionate than I knew it could be; and we struggled, but our family gained much more than we lost.

We'd been kids together, faced loss and still found love. Deeper love.
I will not deny that the process was extremely painful and scary as we faced so many unknowns. Today, my family loves each other more than ever. The four of us endured heavy losses and terrifying times because  catastrophic illness hit our family out of the blue, a young family who had been capable of anything and everything. We endured and we triumphed we rebuilt our lives. We suffered together and we celebrated together. Through it all, we've learned that nothing else is as important as family.

The girls during our last Christmas in this house.

Sisters and Fellow Aggies. This is the senior year of
my oldest at A&M last year and the freshman year of
my youngest at A&M. A great ending and beginning.

My well adjusted, intelligent and beautiful spite of the
trauma in their childhood and their lives turning upside down, they
are beautiful on the inside and out. Full of sweetness and a tad bit of vinegar!

My silly girls.

David and I being our normal, silly selves.

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