Lupus is one of the most cryptic, mystifying diseases on the planet. As a wife and mother I get up every morning to car pools and breakfast and plan my day around doing cloths and arranging dinner. The rest of the day, the part nobody sees, is sweatpants, naps and Netflix. The hardest part of lupus to me is having to explain to someone what it is. Lupus is so different for so many people. But as most of us know, I don’t look sick on the outside but my body is at war on the inside.
I remember as a child the severe leg cramps. I remember getting burnt too many times at the beach and winding up with blisters on my lips. I remember the mouth sores and being so tired some days that I could sleep forever! But I was a teenager. I lived in Florida. I was a swimmer, cheerleader, lifeguard, well and just plain busy. I had a convertible and I loathed in the sun for that perfect tan so I never protected my face. The one thing I did not think about was the photosensitivity to my eyes. We did not have computers when I was a teen but now if I write to long my fore flare begins.
My ten-year old has started to produce the same symptoms I had as a little girl. He has leg cramps and if he goes outside for any length of time his face flares so bad it looks like a second degree sunburn. unfortunately for him the number one cause of his fore flare is his gaming systems. If he plays to long he pops up with a nasty butterfly rash. A friend told me about Gunnar glasses from amazon.com. They will protect him from computer vision syndrome and cut back on the ugliness of the disease. I have not tried these yet but, I am very interested to see if they work.
Maybe that is why Lupus is so relentless. The outside wonders of the world, the vitamin D & C which claim to help depression and give you the boost you need are the very things that make me so sick. The entire atmosphere can bombard my body. So if you see that nice tan glow that makes us look healthy just remember it makes us feel horrendous and scared that at any minute we could feel the wrath of the warm, glowing sun.
Italo Calvino said: The more enlightened our houses are, the more their walls ooze ghosts. Image credit: “love Don’t live here anymore…” – © 2009 Robb North
I look at this house and see the western sun filling the windows with a warm amber glow. I see the loving family embracing the children running in and out. I also see the family very rich in love while only providing the bare necessities of life. My 10 yr old sees sadness. He cannot see passed the dilapidated house with no windows whose previous owners cold not have enjoyed the supplementals of life.
How could I as a mother have failed so much? I thought I had taught my children about selfishness, and having a proper attitude. Not to see things from the outside in but to look at a person’s heart to find their true identity. I write this as I hear my boys fighting in the next room as they are playing on their newest hankering, their “precious”. My husband calls the xbox the “precious” because if left up to them, my boys would play on it day and night. They began to plan their days around it. If I call them for dinner they eat as if they are mesmerized by the hum of the power button in the next room.
I begin to think though why not love this game? My son does not have to change who he is to play it. He does not have to please a loving member of the family so that he can hear them say I love you. He does not have to face the pain and rejections that occur when we are around family that may not have the patience to see him for who he really is. He sees this old house as a self-portrait. A strong sturdy shell but hollow inside.
My job seems to be a little harder at times. Every day is a challenge to keep him from slipping into a depression that others see as controlling and demanding. It hurts to be alone. It also hurts to walk into the lion’s den. Imagine the fear he feels not being able to spend time with family because he is afraid of what might be said to him. My younger son just knows that something is not right. But each of them know about sharing and love. We have a unofficial cookie ministry for their friends. If someone is sick or in need, we bake. I have one that cooks and one that gives them out. I truly have the best of both houses.
Plane Crash. Bags flying everywhere. The captain standing at the front of the plane telling jokes in his Dallas cowboys pajamas. What a vivid imagination for a 10-year-old flying by himself. Through the eyes of a child life seems so unbalanced. These mystical experiences can seem so dangerous but, are they?
As a child our perspective is simple. It is life that messes it up. There is an intimate purity and love that can only be seen through a child’s eyes. At this time of year lights sparkle. Neighbors and friends give out cookies and cards. So why as adults are we so dismal? We are reminded of the loss in our lives. We try to replay the past holidays as if we can perfect the details of those gingerbread treasures.
We also hear the story of the birth a baby born to a virgin that ultimately grows up to die in a tremulous way. This story can be frightening for a child who hasn’t learned the power of sinful forgiveness. But he shines in everyone. He gives these little ones companionship and virtues. His intimacy guides them through experiences no mortal influence could.
Your substances belong to Jesus. Let no one defeat you… “little ones to him belong, they are weak but he is strong”.
Sisters are the pinnacle of sacrifice, responsibility, purity and love. There is no place in the heart of my sisters for hatred since all have fallen to sin and been forgiven. We each show a sense of security and well-being that has been rooted in us by the stability of home and family.
My seasoned sister radiates self-control, human kindness, and respect. She has a marvelous magnetic personality that demands control.
My mezzo cohort has a gift to turn struggles into solutions. She is a companion that will cheer me to the greatest heights. She will stand hand in hand with me for any biblical truth.
My puerile peach has a jovial, jaunty sparkle. Her days shine with thankfulness and empowerment. She is a visionary that sees the world with a formative, hip edge.
The glue that holds it all together is a spiritually protective mom that unites us with the power of prayer. Her sacrifice and love helped heal our family but she never forgot who gives us true companionship.
LOVE YOU ALL!
I am sitting at my desk looking out the window at the beautiful butterfly bush that brings vibrant color and serenity. The house is quiet and the cat is napping on the window ledge soaking up the sun that fills the house. But I sit vacant. Like I am abandoned. The emotion I felt throughout my life has been changeless. The times of happiness have never been able to push through this invisible realm I have. I truly sit and wonder what do people feel when they look at their newborn baby or look at pictures of fun memorable times? I love my boys but at times I just traveled through the days feeding, changing, bathing. I wanted to crawl in a ball when they wanted to play or interact. It hurt so bad to see them look up at me as an innocent being needing love or approval but my heart was still stone cold.
I am always anticipating a time when I will be abanded. My oldest child was a very good baby. He never cried when people held him. Then he started to pull away. He did not want to be held. He had certain triggers and particular ways he had to sleep. He cried all the time and I had to be in constant interaction with him. I soon figured out he needed more intense play. He liked lights and certain movements and certain textures. Even with this, I still could not break through my emotional sphere. Could he see through me?
There is like a black globe holding in my emotions. It sits in the middle of my head and I can see everything around it. It will not crack open. It makes me feel empty. I still cry and laugh but my body does not get the euphoria that comes with those emotions. I still feel sometimes there is nowhere to go. I go through the day understanding that one person out there knows and they have had enough of being raw. Just because we don’t feel it completely or we feel it the wrong way doesn’t mean we need to silence ourselves. I hope to find peace outside of my black sphere. Thank you for letting me share this with you.
Slaves used to sing a song “Follow the drinking gourd.” It was a code to follow the north star to the underground railroad. Frederick Douglas although an escaped slave himself, criticized the movement. He felt it would allow slave owners to be more aware of these escape attempts therefore making it harder for the slaves to escape.
A Domestic violence Hooligan is aware of all these past devastating tools. These slave owners will hold on to every ounce of your spirit. They will recite their criticism reiteratively. Many of us look back and feel inside our timid little hearts, descriptions from a person who has chosen to withdrawal from a family instead of giving the unconditional love the family needed for survival. This is a devastating blow. Words can be the most camouflaged thing in a house. They can pull a child apart and leave her empty. The only happiness she can feel is when words of criticism are spoken. “Her” words make her comfortable.These are the words she is familiar with. They pull her into a dark space in her mind. She feels powerful and rapacious there.
She will stay there. Her misery will grow and develop in more spaces where she will save her sadness. Look for God in your difficult places. He will never leave you or forsake you–Hebrews 13:5. We never have to question his words.
“Watching your child suffer rejection from an uninterested or uninvolved parent is heartbreaking.”as Ron Deal author of The Smart Step-Family explains. At times, I am plagued by relentless guilt. It is hard to pull the beauty out of these trials because the gifts are often masked by such raw emotion. Home can become a cold and busy place. We routinely walk through life trying to teach children how to survive in today’s society. We all have spiritual gifts. Teaching children to fulfil their spiritual gifts often becomes one of the most difficult tasks parents are expected to instruct their children in. Paul explains,”….. Fathers, do not stir up anger in your children, but bring them up in the training and instruction of the Lord.”(Ephesians 6:4). Anger can often disable a child and stunt their spiritual growth. Anger can also bring disobedience and cause strife in the family and church heirocracy. The church relies on each member to bring their gift …… no matter how big or small.