I think I need a new bandaid....

I think one of the reasons we stay in relationships that we are dissatisfied in, is because of the fear of the unknown. The unknown may be more painful than the pain we are currently experiencing. We become so used to our situation, that even chaos feels normal. We wouldn't know what 'normal' is if it punched us in the face. We become paralyzed  in fear. 
I have heard that when your ship is sinking, any life raft looks good. We grab hold to the first thing that resembles a life raft. In our minds, they are more than a life raft, they are a cruise ship. Saved! We mistakenly believe that life raft is what we are to wear for the rest of our lives, when in reality, the purpose may simply be to get us to the shore of a new life.
There is a joke about a man stranded on a deserted island. He begins to pray to God to save him. As he is praying a plane lands and offers to take him off the island. He replies that he is waiting for God to save him. A little while later, a cruise ship comes by, and offers to get him off the island. He responds the same way. A little while later, a submarine comes by and offers to get him off the island. Again, he responds the same way. Sure enough, he dies. When he gets to heaven, he asked God why He didn't save him, and get him off the island. God replied, I sent you a plane, a boat, a submarine.....Sometimes, God does answer our prayers, we just don't recognize them, because they may not appear the way WE envisioned. I think that is another reason why we stay in toxic relationships. We want to make sure we are doing the 'right' thing, and expect the answer to be crystal clear, as if God himself would open the sky, and tell us directly.
Sometimes the thing stopping us from having the life we want is...US. We stand in our own way. We get to the edge of the cliff, and stand there. Some of us feel that there is an invisible string holding us back. We don't know what it is, we can't verbalize it, we can't describe it, we just 'feel' it. Speaking for myself, I am at that cliff, standing on the edge, ready to take the leap, ready to jump into a life I know is waiting for me, and I am frozen.  Frozen because I know the fire I will have to go through to get to the other side. Doubts whirl around in my head, my emotions are all tangled, like a ball of string that is impossible to untangle. I have been thinking so much about my situation, I think I thought it to death. I have lamented for so long, only to come back to the same conclusion. I feel incredibly lonely with myself, yet I don't want any company.
There is a quote by E.M. Forster: 'We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.' That is another part of the equation. We have to be willing to let go of the life we are currently in, no matter how unhappy, unsatisfying, unhealthy, or unfulfilling, in order to make room for the life. If we could just spit it out. Spit the words out. Say it! Say it! Let them come out, even if they are clumsy, awkward, and fall where they will. Once they are out, things will automatically start to change. There will be no turning back. However it will play out, it will play out. Even if it is ugly, it is still better. Because you will be one step closer to your new life...
Yet another reason still, is the feeling of being responsible for someone else's life. You know the decision you make will alter the life of another person. Their future hinges on your decision. Knowing what that person may, or may not do in response to your decision can feel like an incredible burden. Even though you know that you ultimately are not responsible for anyone's life, or choices, or decisions, you do know that what they may potentially do that they may not have otherwise done if not for your decision is a weight that I for one, hate carrying around. Feeling responsible for someone's happiness is, well, it sucks. Simple as that.
Rip it off slowly, or give it one quick rip? Either way, there is pain. Pain. The inevitable pain that comes with change.....

Just Daydreamin...(this one is for Kelley)

Sometimes, I daydream about being alone...
I have a little white house, with a pretty front porch, Sea-foam green shutters, and a ceiling fan. Yeah, a ceiling fan...
Fluffy pillows on a small cushy couch, and a rocker....
Lots of plants, and colorful flowers: Sunflowers, Daisies, and Black-eyed Susans.... 
Wind chimes, and the ocean. Salt air, and soft gentle breezes....
A watering can, and a slumbering cat in the warm sun...
Billowy clouds, soft peaceful music, and the crashing of the waves....
I like flowing sun dresses, and long wavy hair...
In my mind, I'm already there.....

The Lion and the Dove....

A prayer that I believe my mother must have prayed daily:

Dear God, Give me the strength this day
to Love, to be the Lion & the Dove.....

My mother always seemed to know when to be strong, and when to let go. She has been the greatest example of unconditional, ever-lasting love, devotion, strength, and courage. I only hope to pass down to my children the same sense of security.
I have come to realize recently just how fortunate I am to have the mother I do.
 Most of the friendships I have had over the course of my life involve girls/women that have very dysfunctional mothers. Whether it be mental illness, over-bearing, controlling, distant, narcissistic, alcoholic, etc., my mother is not any of those. My mother has always been supportive, available, loving.
I know that there may be some that believe we are too close. But, I don't feel that way. How can it be a bad thing to know you are cherished? How can the love of a mother and child ever be bad? I suppose love that cripples our children could be bad. I am not crippled. If anything, my mother encouraged me to spread my wings, and like a homing pigeon, I was always able to find my way back to the home roost.
It isn't always perfect, and we have our moments. The times my mother resembles anything of anger toward me, is when I am not being true to myself. When I give in. She likes that I am eccentric. She likes that I am outgoing, loud, bubbly, and vivacious. She likes that I can be, and usually am the life of a party. To see me suppress myself, in any way, for any reason, or anyone, frustrates, and angers her. To see me dull my shine for anyone, saddens her. And, the sad thing is, I have dulled my shine. Too many times. I am not sure what she deems worse; that I would allow my shine to be dulled, or that someone would allow me to dull my shine for them. Perhaps they are equally distasteful. Either way, it is time to get my polishing cloth out....I need to find my sparkle again!

And the walls came tumbling down....

'We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.' ~~E.M. Forster~~



Ever go swimming in the ocean, and get knocked over by a large wave? Your body tossed around, swirling, struggling to gain your footing, only to be dragged to the shore, completely disheveled? Sand in places it shouldn't be? That is how I feel my life is. All the time. I want to get to the shore for a reprieve, but the ocean keeps sucking me back in. This has made me exhausted. No treading water. I just don't feel as strong as I once was right now. What negative energy I used to be able to deflect, I take on. It seeps into my skin, filling every crevice. And so, I  feel a heaviness, as if I am wearing a  lead coat. Not a life jacket. I want to take off this coat that weighs me down, but the zipper is broke.

 After dropping Roxy off at school the other day, I turned on the radio, and proceeded home. As I turned down our street, a song came on that brought me to a sweet time in my life. I pulled into our driveway, parked the car, and without warning, I began to cry. It took me by surprise. I did not expect such a reaction from a silly song. But, it wasn't really the song. It was the memory of a time in my life that was simple. Simple. The word does not seem fit in my vocabulary any longer. 

This was no ordinary cry. It would be what could be described as a 'melt down'. My body convulsed. I couldn't catch my breath. My heart was racing. I wailed. My body slumped down on the steering wheel. I held onto it, clenching so tight, my knuckles turned white. It lasted for twenty long minutes. I cried for what was, I cried for what I thought would be. I cried for what I am afraid will never be. When I finally finished, I was completely drained. Exhausted. Empty. After a cry like that, we empty ourselves. I felt as if I had space in my heart again.

Most weekends are consumed caring for Roxanne, with my husband. We are two people trying so hard to hang on. Hangin on so we don't fall apart. Most days, we are white knuckling it. Playing 'tag team' caring for our disabled daughter. Two people cooped up for any period of time will inevitably start bickering.  For us, it's a form of communication. In some ways this is a good thing. Where there has been silence for so long, there are now words. Words that are spilling out. The things that we should have been discussing for so long, the things that we have kept silent in the chambers of our souls, have all begun to surface.

I should be happy about this, and I am, but right now, what I want, what I desire, is peace. Peace from turmoil. Peace from chaos. Peace from crisis. Peace from anyone else's demons. Peace! I have my own demons to contend with right now. I have my own dragons to slay. Those damn fiery dragons. Stupid Lizards!   I have always been the one to be strong for everyone else. I have been the glue. But, I've become 'unglued'...
  
I yearn for those days long ago, the simple, silly days of years past. All the things I was able to do. That my body was able to do. The things taken for granted. The dreams I had for myself. The life I envisioned for myself. All the things I wanted to do. Still want to do. My 'Bucket List' is  full!  I think that is what the tears were for. That is one of the reasons I cried so hard. Because there is a  'letting go' of the life you planned. Adjusting dreams. A surrendering to the 'what is'.

I could linger in the past if I wanted to. But dragging one foot in yesterday, prevents us from fully committing to today, and whatever the future may have in store. I don't know what today will bring. Every time I think I got it all figured out, it changes. I can safely assume it will involve devoting most of my energy to Roxy. I'll continue to do my best, give it my all, fight the good fight, and try leave a legacy to my daughters that I love them more than I love myself, and that they make today, and all my tomorrows worth waiting for. That is the 'what is' of my life.  That is, as they say, what it is. And that is, okay with me.

What's your value? (previously posted on my facebook page)

The purpose of life is a life of purpose.  ~Robert Byrne

During my consultation recently with the Orthopedic Specialist about Roxy's tethered spinal cord, the subject of the differing schools of thought in the medical community regarding the 'value' of a person's life came up. I wasn't sure exactly why he decided to broach the subject, but I do know why now,  in the grander scheme of things.  I will get to that in a minute.
There are  committees that make decisions regarding donor organs, and which person would be best 'suited' to receive it. The decision is usually made to opt for the person that has the most 'value'. The person that will be a 'productive member of society', etc. During our conversation, the surgeon told me that there are differing opinions as to what should be done with a child like Roxy. I said, 'You mean disabled?'. He said yes. He said that one school of thought is that no extra ordinary means should be taken on a child whose life expectancy is realistically shorter than most, and what quality of life would it give? What value is she worth? What will she contribute? How will she give back? I asked what HE believed. After all, this is a person whom I am about to completely entrust my child's life, to possibly perform surgery on.  I want to make sure that HE feels she has as much VALUE as any other HUMAN BEING.
His answer comforted me. He said he feels that she is a human with just as many rights as any other human. He would do his very best to ensure that he can make her as comfortable as possible, and work to give her the best quality of life. He would need an MRI first, which is risky in and of itself, as Roxy will have to be put under anesthesia, which carries with it risks, since she has delays, and is riskier for children that have delays. He said he feels it would be 'unethical' to do unnecessary anesthesia, if I am not willing to do the surgery. I am, so I will.
As he was discussing the 'value' of a persons life 'like Roxy',  I was kneeling in front of her, trying to keep her from getting out of the chair. She began pulling on my sleeve, the way she does when she wants my attention. I said excuse me to the doctor, turned toward her, and said 'Yes Roxy?'. At that, she took my face in her hands, pulled my face toward hers, puckered up in only the way she can, kissed me, and then put her forehead on mine. We looked into each others eyes, long and hard, and in that moment, she said more than any words could possibly express.
The surgeon was moved to tears. He said that was the most precious thing he has ever witnessed, and that it would stay with him forever. In that moment, Roxy showed him exactly what her worth is.....

Austin

When I found out that I was pregnant with twins, I was in a total state of shock. I didn’t believe the ultrasound technician. Even after seeing the print out that you receive, I was still in complete denial. It is hard to wrap your brain around the fact that you have more than one human being growing in you.
My mother- in- law had come with me on the day I found out. She had taken me to get my first ultrasound. When I walked back to the waiting room, she could see the dismayed look on my face. She immediately asked me what was wrong. I said, “There is two”. She was thrilled, and gave me a big hug. She thanked me for what she called a 'gift' of grandchildren. I was so dam excited, that I just had to share the news with Mark right away. On the way back to his parent’s house, Jane and I stopped off at Mark’s job. He was working for a title insurance company at that time. I wanted to tell him in person. I wanted to see his reaction.
When I went in, I asked for him. One of the girls working there went to tell him I was there to see him. I was bursting at the seams to tell him! When he came to the front of the office, I told him the news. “We are having two babies!” All the ladies in the office congratulated us. I don’t think he was able to wrap his brain around it either. He still looked like he was in a state of shock when I left.
I couldn’t wait to get back to the house to call my mother. I rushed to the phone, dialed her number at work, and waited anxiously for her to answer. When she answered the phone, I said, “Mom, are you sitting down?’ She was confused, said that she was, and asked why. I said, “There are two”. She said, “Two what?”. I said, “We are having twins. There are two babies.” Silence. She was stunned. She yelled to her co-workers that I was having twins. There were cheers in the background. The tone was set. Joy. Sheer joy.
To me, it was such a gift. Mark is an only child, and I thought was how blessed we were to be give an instant family. His parents would have two grand babies at once. I knew the chance of me having more children after this was not likely, so to give him the gift of two children thrilled me beyond measure.
The pregnancy went smoothly, nothing out of the ordinary, and the babies were, according to all the tests, completely healthy. I was huge! Seriously, huge. By the end of the pregnancy, each baby weighed over six pounds, which is big for twins, considering a single baby often weighs only six pounds. Roxy was baby 'A', and Austin, baby 'B'. That was the birth order. Roxy would be born first, then Austin would be born second.
When Austin died, the blow to my heart was so hard, I didn’t think I would ever breath again. That wasn't supposed to happen. He was fine. All along, he was fine. What happened?
I was in such a state of shock. To say I was numb doesn’t completely describe the feeling. The pain of a loss of a child engulfs you, smothers you, suffocates you.
When we were leaving the hospital, I remember being wheeled down to the front corridor, waiting for Mark to get the car. I was holding Roxanne, and then, like a tsunami, such intense grief overtook me. I didn’t want to leave. I didn’t want to leave my baby behind. I knew he was on  cold table, in a drawer somewhere in that hospital, and I just wanted to go get him, and take him home with me. My child should not be in such a place. He should be with me, wrapped up, safely in my arms. I wasn’t ready to say goodbye. I needed more time. As we drove away from that hospital, a part of my heart was left behind.
My mom wasn’t sure, and debated whether or not to take his crib out  from their bedroom before I came home. I was glad that they left it. I went in to the room, shut the door, and sat in between both cribs. I wept. I did this for days. When I felt ready, I had it removed.
For days, I walked around as if I was in a fog. The grief was like a ragging horror. It abused me. I would spontaneously break out into wails of grief. I didn’t understand. I wanted to know, Why? Why did God take my baby. Why did he take my only son. I thought for so long it was punishment. Punishment for an abortion I had many years ago. One in which I felt tremendous remorse and guilt. I thought it was time to pay up. I know God doesn’t work that way, but I couldn’t help but feel that was part of the reason. I have come to know that isn’t it at all.
There is a scene in the movie Steel Magnolias, where Sally Field’s character, M’Lynn’s daughter, Shelby died, and she is at the funeral, standing alone at the coffin. The funeral is over, and the attendees have all dispersed. Her closest girlfriends notice she isn’t with them,  turn to see she is still standing alone, and return to do what they can to help her. They are trying to console her, but she is so inconsolable. Then, she begins to get mad. She is trying to make sense of why her daughter passed away. Why she went so soon. She begins to go into a rant, and one of the things she says, is “No! No! It’s not supposed to happen this way! I’m supposed to go first. I’ve always been ready to go first. I-I don’t think I can take this! I-I don’t think I can take this! I-I just wanna hit somebody ‘til they feel as bad as I do! I just wanna hit something! I wanna hit it hard!” I wanted to hit something, too. I wanted everyone to feel the pain I was feeling.
They say there are five stages of grief, Denial, Anger, Bargaining, Depression, and Acceptance. I know them all too well. Been there enough times, and you would think going through it so many times would make it easier. Well, it doesn’t. And it sucks. It really sucks. Whether it is a loss of a child, loved one, the end of a marriage, or a break up, it still hurts. And you can’t fast track each stage. As much as you want you. If you deny the process, it always resurfaces. You will eventually have to deal with it. Pay the Piper time….
These past several years have been a continual process going through grief for me. I read a quote in the book, “The Language of Letting Go”, “My feelings have been stored for so song they have freezer burn”. It really resonated with me. I have tried to avoid the pain of going through grief, and am dealing with unresolved issues.
I also feel tremendous guilt for my other children, Kristen and Kelley. I was so consumed with my own grief, that I don’t feel I gave them the time they needed from me. No one can prepare you for this. I didn’t know how to handle it. I could barely endure what I was feeling, and pushed everyone away. I wish now that I would have crawled into bed with them, wrapped them up in my arms, and cried together. Let them have the time they needed to cry with me. To let them know that I am here. We will get through this. It is ok to cry. You can still count on me. I wanted them to know I would be ok.
They were told to be strong for mommy. How could they possibly know how to do such a thing? They were just as confused. They just lost their brother, too. They needed to grieve. They were only little girls. I wish now I sent them to counseling. They needed a place to express what they were feeling. They needed a voice. And I didn’t give it to them.
Some people may think I have gone off my rocker when I say this, but for about three months after his death, I felt him with me. I would be sitting with Roxy on the couch, when I would feel the presence of a child running around me. It didn’t scare me. It was as if he was playing hide and seek. It was a playful feeling. At first it wouldn’t bother me. But, as time went on,  he became more intense in trying to get my attention. One day, I finally said to him, “It’s time to go. It is ok to go now. I love you. Now go.” From that forward, I didn’t feel him around me. Sometimes, now I wish I do.....

Austin
Floating, floating…
Still and quiet.
So close, too late.
Gone for now, but not for always.
Did you suffer little one?
In the darkness you weren’t alone.
There were no signs, I did not know.
I can’t seem to let you go.
Confused, bewildered…
Still in shock.
Angry at God.
I prayed for you, I praised god to have you.
My only son, and now you’re gone.
My mind won’t accept, I can’t put my heart to rest.
Goodbye for now, my sweet little one, until the day we meet again.
by, Kimberly Saxe

A new destination...

Roxanne. Sweet, Sweet, Roxanne.
I hate to admit that I don’t remember the first few months of her life all that well. I was so consumed with grief from the loss of Austin, that I was just going through the motions most of the time. I never admitted this, but I was angry. Angry that Austin died and she survived. I didn’t ignore her, but it was very hard for me to bond with her initially. It passed, but I hate myself for feeling that way. It wasn’t her fault. She was the sweetest, most gentle soul. She was patient with me. She lost her brother. I believe she was grieving, too. The little brother that kept her company for so long was no longer there. Although I do believe he is with her. He is her guardian angel.
Roxanne was a very quiet baby. Not fussy. She didn’t cry very often. She did love to be held, which I was happy to oblige. When we were alone together, I would sit for long periods of time, and hold her. I would sing to her. I would talk to her. I would hold her while doing chores. What bonding we didn’t do in the first few days, we more than made up for. Having a child with seizures and Autism was not at all what I bargained for. It isn’t the vision I had for our life. In the same way you plan a vacation, select the destination, buy all the books, clothing, and necessities for that particular destination, only to wind up arriving in a completely different place, it left me mad, unprepared, frustrated, looking for a way to get back on track, and go to my original destination.
Once you learn and accept that isn’t going to happen, you have a choice. You either decide to try to enjoy where you are, and make the best of it, or you remain bitter, resentful, and even jealous. I admit, I often teeter between the two. So much of how I feel depends on how Roxy is doing. If she has a good day, I feel good. If she has a bad day, I feel sad. I have heard it said that “parents are only as happy as their least happiest child”. It seems to be a universal truth. To any parent that has overcome that, I am in awe.
I truly don’t mean to be pessimistic. I really struggle with this. Only someone living with a child with seizures could possibly understand. The daily uncertainty. Never knowing what to expect from one minute to the next. Plans made. Plans canceled. No rhyme or reason. One day she is fine. The next day is a whirlwind.  Hope seems so distant. Bubbles of joy bursted. Living with constant disappointment, not wanting to get too excited when another hour passes without a seizure. Bowed shoulders tell all.
When a day goes by it almost makes it harder. Why? Because you experience how life ‘could be like’. But you are never really able to allow your guard down. You are always living in alert mode. Waiting for the ball to drop. And, it does. It always does.
I watch my pink, bubbly, vivacious child, go from a smile to a grimace. Her body stiffening so hard it ridged. If no one is there to catch her, she falls to the ground with a hard thud. Her body jerking and shaking with such intensity. Eyes bulging, rolling back, watering from not blinking. Pink to Blue. Hands clenched. Mouth clenched, often biting down on the inside of her cheek, or tongue. Unconscious. Not breathing. Once the electric storm in her brain passes, she expels air, goes limp, and struggles to breath again. Struggles to fill her lungs with air. Such abuse.
After the seizure, she sleeps. Her little body tries to rest. To restore. To heal. To rest after what it just endured. She will be disoriented, unsteady. Over, and over. The most frustrating thing, is that she is unable to communicate with us how she feels. She can not tell me in words what it feels like, what she experiences, what she sees, or feels prior to a seizure. Only her eyes talk to me. I know Roxanne. Mommy understands. It is cruel.
Hospitals, doctors, tests, medication after medication. Failure after failure. The side effects sometimes worse than the seizures. Awake or asleep they still come. They are relentless. No rest. No time. Tired of questioning, “Dear Lord, will this be the one?”
Well intentioned people say, “Have a life in spite of”….I say, “Walk one day in my shoes.” I am sure they will never say another word. I used to get angry, but now I accept that they just don’t understand. They speak out of ignorance. Only wanting to help.
Oh just give us one more day seizure free! Please! Trying to have an as semblance of normal. Normal. I don’t even know what that means anymore. Consumed. Exhausted. Wanting time for myself. Faith waning. Faith tested. Angry at God. Again, questioning, “Why!” Is it me? Did I do something? Believing somehow my behavior dictates how bad or good she will be. If I am real good Lord, will you stop this? No.
Some days, all I want to do is cry. Cry and sleep. Cry, cry, cry, and cry some more. Cry until I can’t cry another tear. I feel as though there is nothing left in me. Sleep walking through life. A coma. Going through the motions. Doing the least of what is expected. But, that is all I have some days. I hear, I see, I am aware of what is around me, but I still can’t do anything. Anything that is, but cry....