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About Eric’s Wife

Some may say I am a "Stay at home Mom," but that is not even close. I am Eric's Wife. I have exhilarating strokes of genius, followed almost immediately by paralyzing pangs of self doubt and, for whatever reason, here is where I blog about it - warts and all. I serve a merciful God with a clumsy hand and at the end of each day I go to sleep thankful to be His servant and Eric's wife.

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A Refining Moment

May 20, 2008

“Mom? Are you sick?”

Mackenzie asked me to sit down with her yesterday so she could have a talk with me. Turns out she was ready to ask about my health.

“What do you mean, Kenzie Faye? Are you asking if I have a cold? Or a cough? Or a belly ache?”

I didn’t want to burden her with more information than she needed and you never know where kids are going when they start asking questions.

“No, I mean your body. Is it broken?”

Even though I had been preparing myself for this talk for some time, it still took me a moment to gather my thoughts and catch my breath.

“Well, Mackenzie, my brain has owies all over it that make it difficult for my body to do what my brain tells it to do,” I seriously have to give myself mad props for explaining something as complicated as Multiple Sclerosis using the word “owies”.

“Can you take medicine to help you get better?”

“There is no medicine that can cure MS, but there are treatments which claim to help slow the progression. Multiple Sclerosis is what’s called an ‘orphan disease’. This means that not enough people have it for the research to be cheap and this causes the medicine to be very expensive. It costs about $1500 a month to manage M.S. on a good month. This makes insurance companies nervous and they created something called a ‘pre-existing condition clause’. This means that I will have to wait for one year before our new insurance company starts to pay for me to get treated for Multiple Sclerosis. To be honest, there is some speculation about whether or not these medicines actually help with quality of life any more than not using them. I don’t know if I want to go through the grief of painful daily injections, terrible side effects, etc. if I am going to wind up the same way either way. You know?”

That’s not really what I said. She’s asking the questions, but she’s only six. What I really told her is that there is medicine but I don’t take medicine right now. There is no easy way to explain the many reasons I am unable to, and yet also would choose not to, take medication.

“You should take the medicine,” her eyes burn through me in such a way as she says this that I make the immediate decision that I will begin the daily injections the instant my insurance kicks in. If she believes it will work, there is no way I am going to let her think I didn’t try.

Later on that same day I found Mackenzie in the kitchen with a broom. She had swept the floor and was inquiring as to where the dust pan was. I watched as she expertly did her task and then she began straightening up the living room. I did what any mother would do in a moment like that:

I gave her an apron.

And she beamed.

I know why my six year old daughter was sweeping my floor. I know because I swept my Mama’s floor. Mom has Lupus and when I was about Mackenzie’s age I started to notice the effort with which she took care of all of us. Meals were always prepared, laundry folded, floors cleaned, dishes washed. This woman took better care of her family than a lot of Moms I knew with no illness.

I found her dedication to us and her service of us to be admirable and inspiring. I began washing dishes and sweeping floors long before I was asked because I knew that my Mama was going to do the work if nobody else did and she needed the break. I adored her and I had deep empathy for her in her desire to serve us even as she was so ill.

That’s what I saw in Mackenzie. I saw the empathy. My eyes tear up as I write this now. There is a large part of me that is so over the moon with pride and joy that my little girl has such a beautiful servant’s heart. But it is heart wrenching to know that she is now worried and concerned about things that no little girl should have to even know of. She has some actual, real fears that I cannot deny. I can’t promise that everything will be fine.

In all the years that I have lived with this disease, I have never more than right now felt a desire to see it gone. I want to tell Mackenzie that it is gone.

But then I still want her to sweep my floors after I tell her. Is there any way to refine a servant’s heart without fire? Anyone?

A Bit More Fog and a Thank You

March 27, 2008

I had just celebrated my 17th birthday a short four days before I was first admitted to the hospital on account of the Multiple Sclerosis. It was determined that I needed an MRI and at that time there was only one machine available in all of Austin. My parents decided to take me out of the hospital in their own car and to the hospital across town that had the MRI and then back to my original hospital after.

They purchased some lovely satin pajamas for me and buckled me into my wheelchair for the ride to the car. Wide awake, and exhausted all the same, I watched as in a dream while so much occurred around me. I was wheeled to the exit and felt a bit of shock at the wind on my cheeks and in my hair. Had it been only three days since I walked through these doors, somewhat of my own ability?

It may have been my Dad, I’m not certain, but I found that someone was behind me trying to lift me into the car. I felt the chair move and knew right away that the wheels on the wheelchair needed to be locked first. It was the oddest sensation: knowing all at once that something must be done quickly to prevent disaster and doing nothing and saying nothing all the same. Just watching it happen.

My feet became tangled at the door and forced my parents to lay me at an odd angle while they got my feet adjusted. I remember laying there, so still and somber, while my brain raced with a million animated questions: Where exactly are we going? Am I going to die? Did we win the football game? What happened to the play? Who’s getting my homework? Am I going to die?

As my Dad drove to the MRI center, so carefully- as though he carried the Queen, I found that I was slipping in the seat a bit on account of my satin pajamas. I slid further in the seat and I can honestly tell you exactly what went through my head, “Huh. It looks like I’m going to slide to the floor board. Sure wish I could say something. I’m sure they’ll notice before I hit the floor.”

“Amy? Would you like me to help you up? Why didn’t you say something?” I could hear my Mom talking to me and I could feel her helping me up, but I had no strong ability to respond.

A high dose of steroids and mercy caused that first spinal cord lesion to reduce in size enough that I could again walk and use my hands by the time it turned to a scar. The exhaustion though, that has only ebbed and flowed as in good days and bad days. It’s that exhaustion that sits on me like a ton of mud and I struggle as if in a bad dream to get from point A to point B.

I have spoken before about the sensation of having my personality paralyzed. By that I mean that I often feel stunted and unable to fully express myself in speech and facial expression to the extent someone with as loud a personality as I have would like. This is maddening.

As maddening as it is, I have found great relief in writing. It feels as though I am able to properly convey the extent of my thought with the same tempo and order as I would if I had the energy to actually have a visit.

Writing has become an extension of my personality. It is through this little key board that I am able to put down the thoughts that run around and around in my brain while my body looks as though I am near comatose.

There are days when Eric gets home from work and I am exhausted. Exhausted and pleased at a day’s good hard work. I am worn out to the point that I am unable to actually chat with him about the day’s events, but I can point him to my ol’ blog and there he has it, “The Life and Times of Eric’s Wife”.

I understand now why my Grandma was always writing. Sometimes it’s all I can do not to sit down and write, even in crayon on the back of a cereal box if I’m desperate.

I just wanted to say thank you. This blog has become a bigger deal to me than I imagined it could when I started some three years ago. Thank you all for reading and commenting and e-mailing. For interacting with me in this fabulous little place called Blogger and giving my tired self a voice. It’s a hoot, ain’t it?

*Also, a big thank you to Jennifer for stepping up with the bike. You may have heard the excited shrieks from a certain eight year old across town. Thank you.

The Start of One Journey Meets the End of Another

March 13, 2008

My whole take on having MS can be wrapped up in my dear Grandmother’s first and last statements regarding it. I’ll tell you a bit about her first so you can understand just how profound her statements were and why they capture so well my thoughts.

When she was 12 years old she was diagnosed with Rheumatoid Arthritis. She grew to get married and raise three children, my mother being her youngest. No person who ever met her left not knowing the greatness of God’s grace. She embodied for me the scripture, “My grace is sufficient for you, My power is made perfect in weakness.”

My Grandmother was my very own personal Rock Star. I adored her and I never felt anything less than adored when I was with her.

She happened to be in town when I was first placed in the hospital. She had watched my decline and had suggested to my parents, four months before the professionals, that I might have MS. Mom and Dad got me settled in my hospital room and then Grandma (I always called her Grandma, but I think she preferred Grandmother) stayed with me while they went to take care of my brothers, who had no clue I wasn’t at school.

Grandma sat and joked with me and helped make light of things. I didn’t know then what she knew about the road ahead of me. A nurse came in to give me an IV, my first in a lifetime. I was terrified of needles and certain that there was some mistake. I was told I was only there for an overnight visit and told the nurse as much.

Grandma gave me her hand – her gnarled, crooked – hand and told me I could squeeze as hard as I needed to, but that, “Things are likely to get a lot worse from here on, no sense throwing a fit.”

I don’t think I will ever in my life forget what it felt like to sit there and hold her hand while I got that first of hundreds of IVs. It was an instant where her lifetime of living in a handicapped, warped body was met by my youthful form just beginning to start my own journey. She knew well what was in store, and though it frightened her, she gave me strength.

I have often thought that God gave me that moment. That starting of the race with my Rock Star at my side. She lived hours away and was just there for a random visit. My parents could have stayed for the IV. Instead, the stage was set for just her and I to sit there and quietly share what was to be her legacy and my charge.

It was less than one year later that she lay dying. Her mind was riddled with Morphine to ease the depth of her body’s pain and she was in and out of conscious thought. My mother was at her side and listened to every breath as she slipped further away. A few days before she was finally freed from her body, she opened her eyes and said to my mother with great clarity and certainty, “Amy’s going to be just fine.”

She taught me many things. She taught me to always match my underwear to my outfit. She showed me how to close Tupperware with my elbow. She impressed on me that it is never too late to learn something new.

More than anything in the world my Grandma taught me, she taught me that this body, this life, this everything, is nothing without the grace of my Savior.

Her words to me at the start told me that there is no sense shrinking back. I must always be prepared to stand against whatever falls in my path.

Her final words about me confirmed the end game God has planned for me all along, “Amy’s going to be just fine.”

If you have known me for long, you have likely heard me say that I am not certain I would like myself too much without MS. This disease has taught me humility, it has forced on me endurance, it has robbed me of any thought but that of Heaven and my Savior risen.

Having children and a husband to look after has changed my tune a bit. As much as I appreciate the many benefits to bearing this daily cross, it saddens me to see that my children must bear it as well.

To be honest, I have declared to the LORD that I am just about lessoned out and am ready to be all that my family needs me to be. As much as I think I am fed up with my circumstance, I remember what my Grandma told me in the very beginning and pick my chin up. No sense throwing a fit with so much to be done.

In the end, I know beyond any doubt that I will be just fine. And know that I have a Rock Star saving my seat.

I spent one last night with Grandma in the hospital before she passed. She gave me her last bits of advice, and I told Mom the next day that everything Grandma told me could be repeated in this song. Mom reminded me of this last night and I couldn’t post this without including the song. Even if you’ve heard this song before, and especially if you knew Grandma, give it a listen and hear what she told me.