Thanks for the concern, but....

Oh, the well meaning people. I don't blame them. I don't get mad at them. I understand they are only trying to help.

I know I should eat better. I know that exercising would be GREAT for my body. I know I should eat whole foods. Organic foods. Take supplements. I know there are all kinds of 'natural' anti-inflammatory foods, supplements, etc. I know. I know. I know! Did I mention, I know!? 

What these very well intentioned people forget, rather, what they can not possibly comprehend, is the lifestyle I live having an Autistic & Epileptic child. 

The sleepless nights. The endless days. Just check some of my Facebook posts. They are usually three, four in the morning, or earlier, when most of the people I know are still sleeping. Peacefully. Comfortably. With their spouse. Or lover. Or comfortably alone. 

I don't have the luxury of taking time in the morning to have a 'routine' for myself. To take time to 'heat' my back, and stretch out my sore, aching muscles. Then take time for yoga, or meditation. I have most likely been up most of the night. Like last night. And the night before. And the night before that. Roxy doesn't understand that I have had three back surgeries. She doesn't understand I have tears in my shoulder. Or a herniation in my neck that sends shooting pains. She doesn't understand the strain that changing her 65lb. body puts on my already over-worked, stressed, injured body.

Roxanne doesn't understand that I stay up with her when her brain won't shut off, and I am completely exhausted. When the affects of the numerous medications fuck with her  little head. I am her source of comfort. Her 'woobie'. Her 'blankie'. I am her source of food, and life. I am her port. Her safe place. At the expense of my own body, time, energy, peace, relationships, marriage, friendships, and soul. I give it all to her. I do it to the best of my ability. Then manage to save the minute amount of energy I can muster to the remaining family members and friends, that I love, love, love!  I need them. Like air. They keep my life normal.

So, I grab the quickest thing I can find to eat. I grab my pain meds to help me get through the day with some degree of quality. So I can function, and work through the pain that has engulfed my body. "Intractible Pain", the doctor calls it. Some may find that weak. I don't care anymore. It works for me. Fast. I walk a couple times a week. And push myself to do it. I would love to grab my cookbooks that have collected dust, and make an amazing meal. I would love to take much needed time for myself and do something selfish. Like sleep. But, I am too busy changing diapers on a pre-teen. Feeding her. Bathing her. Trying to entertain her, because she does not have the skills to entertain herself. She doesn't have friends. Or play house. Or board games. Or go outside. She doesn't have sleep overs with girlfriends. She doesn't go to glass blowing birthday parties. Nope. None of that. I am grateful she still watches Blues Clues. Woe is the day she looses interest in Steve or Joe! 

I know I should take better care of myself. But please don't keep telling me. I know. Wanna help me? Really? Make me a meal. Come to my house and take Roxy for a walk in her stroller. Take your vacation time to sleep at my house, in the bed with Roxy. You stay up all night with her so I can sleep. My husband has to sleep by the way. He has to work. Or we lose the little we have left. Don't tell me that I should look into services that are available to us. Did that. There aren't. Not ones that apply to us. Don't you think I would have utilized everything, and anything that is out there? But no, I won't send her away, so don't tell me to do that either. 

I really do appreciate all the concern. I know I am loved, and that is a great feeling. But, I am smart. I know what would be good for me. So, thanks. Really. I will end my rant now. Duty calls. Literally.

 

A stranger among me.

There is no worse feeling than to have your heart and head in conflict. When you feel like you are in 'Limbo Land'. And yet, this is exactly where I am residing right now. "Limbo land."

On one hand, it is okay. I am floating along. Drifting with the current. I had to let go for now. Let go of trying to figure things out. Let go of wondering if, where, and how...

It has been said that you 'Get used to hanging if you hang long enough'. It's true. If you live with crazy long enough, you get used to chaos. I am used to chaos... Calm is a foreign state of being for me. I am always in a 'defense stance'. Waiting, and expecting the floor to drop out from under me at any given moment. It is exhausting, and I am exhausted. I once said that, 'I cried so much that I emptied myself' - that 'I felt like I had space in my heart again.' But now, I feel like my heart is just being held together with duck tape. I am a walking wounded...

I don't know if a person can change so dramatically over night. Yet, that is what seems to have happened. Can a person go from one side of the pendulum all the way to the other side over night? Swing from one extreme to the other?  I don't believe anyone can live on one side of the pendulum or the other for any extended period of time. Eventually, we all settle somewhere in the middle. The part of us that feels the most 'natural'....I don't know what the 'natural' is for him, and more importantly, I don't believe HE knows what the middle is for him. I still look at him as a stranger. I have even asked him, "Who are you, and what have you done with .....?' I wonder to myself sometimes if he really isn't him at all, but a clone of him, put in place while aliens have the real him! Silly, isn't it?! Like the body snatchers. Then, once they are finished with him, they will replace him, and I will have the old him back. The one that has caused such turmoil, sadness, loneliness, fear, anger, alienation...

I try not to be skeptical.  But I can only work with what I know. If the best predictor of future behavior is past behavior, then I don't have much to work with. He doesn't exactly have the best track record. He seemed very natural, and comfortable in his misery. Which is why I am so pensive. Can a heart with so many stress fractures ever be mended? Will I ever be able to trust again?

I admit, having peace is nice for now. It isn't me this time, trying to have peace at any price. It is the change in him, allowing peace to take place. I find that for the first time in many years, I am able to let my guard down a bit. I don't have the same sense of dread and angst. I am not in survival mode. As a result, I sleep. My body telling me that it has reached its max. My brain telling me that it is saturated, and can not absorb anymore. My soul saying let go. I need the rest. A time to restore and replenish...For who knows what the future holds? This may be a temporary reprieve. The calm before the storm...

Only time can heal this Neglected, Broken heart. This Battered, and Abused soul. Only time will tell if the change is authentic. Only time will reveal what is meant to be. 

Only time will tell...

Listen up Universe!

Sometimes I feel like the law of attraction does not apply to me. I have always been a very positive, fun-loving, outgoing person, who believes in the best in people, that good things can happen and do happen. I have always shared whatever I have with others, often going without so others may have. I have always stood up for the underdog. I have often given so much of myself, almost always to my own detriment....what am I missing? What haven't I been putting out to the universe? It is a mirror, right? What you put out you get back. If that is the case, is it deeds or thoughts? What the hell am I not doing right??!

I continuously have trials and tribulation in my life. I won't go without my ownership of some of it. My choices and decisions haven't always been the best. I get the consequences that followed. But, beyond that, I don't get it. I do get that bad things happen to good people. I get that some bad people go through life not suffering an ounce of bad. This has been a universal law throughout history. So many whys??!

I won't say that I haven't been given tremendous blessings. My children for instance. I couldn't have designed, dreamed up, or imagined three of the most beautiful daughters a mother could ask for. I would die a thousand deaths for them....

But dammit! I would like for just once, to not have to suffer quite so much. Physical pain, emotional pain, spiritual pain. Pain. Pain. Pain. I feel like my mind is wired for pain. My body wired for pain. My life wired for pain. It feels as though my heart has been brutalized. Stomped on. Is that where I am going wrong? I am putting out to the universe that I believe my life is about pain? I assure you, it wasn't always that way. It wasn't what I always put out, so I don't get why this is the result...

Fear. Maybe it is my fear. Not fear that I am not capable. I know I am. If life has taught me anything, it is that I am a very capable person. Strong in many ways. No, not fear of my capabilities, rather fear of how my decisions to do what I want to do for my own happiness will impact the people I love. I know that life doesn't call us to be martyrs. I hope that isn't how I come across. I just care so deeply, for the people I love, that I don't ever want to cause them pain. That hasn't always been good. By not allowing people to suffer the consequences of their actions, cripples them. In my quest to not want some of those I love to suffer from their actions, choices, decisions, I have crippled them. But, that isn't what I am talking about now. Those decisions were for others, not myself. Always for others...that has been my motto.

I need to change that motto. It needs to be more balanced. More like, "Always for others, but for me, too."...
If I could just learn how. If I could just stop worrying so much about the how. If I could just know that 'the universe',  or 'God', will take care of the rest and others...that if I could put out to the universe that I am going to no matter what, it will get the message that I am not going to take it anymore!!

Where we are now is what we hoped for then, but forgot....

Not so long ago, we used to say, "If we could accomplish reducing Roxy's seizures from the 25-50 per month she was having, to just 10 seizures a month, we would be  happy!""Wow! wouldn't THAT be great?! Wouldn't life seem so much easier then?"....

We went into the neurologist's office fully prepared to discuss a medication that had been presented to us at one time, but we declined, because it would require a hospital stay. In order to start it, Roxanne would have to have an EEG to monitor her brain/seizure activity, (during one visit, the tech was annoyed at how often she was called to replace the leads for Roxy, and became impatient with her. While trying to put them back on, Roxy became very upset, because she doesn't understand what is happening, and being held down causes her tremendous anxiety. The tech started becoming rough with her, and began yelling "Hold still! "Hold still! Stop it!", at her while putting the leads back on. Roxy was screaming, and becoming increasingly stressed. I yelled 'Stop!' I put a halt to it, told the tech to leave, lucky that I refrained from punching her, and had the nurse call the neurologist. We left the next day.), have an IV ready to administer medication to stop seizures if she begins going into status epilepticus (a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes), and weaning of one of her current medications. In the weaning process, until the new medication reaches a therapeutic level, if it even works at all, as the medication is removed, it may cause seizures to start, known as 'break-through seizures'.

At the time that the medication was presented to us, it wasn't long after my third back surgery, so I was not emotionally, or phsically prepared for the stress of what it entailed, staying with Roxanne during her hospital stay. She can not be left alone at any time, and needs continuous supervision. Keeping Roxanne occupied, and entertained during a hospital stay is extremely stressful, and takes a toll on me. During one stay, I left briefly to go to the bathroom, fully believing that she was engrossed in watching a video, and while I was in the bathroom, she flipped over the railings on the bed, landing on her head. It wound up prolonging our stay, because the doctor wanted to do a cat scan. Sleeping on the chairs that pull out to a bed leaves much to be desired, and not exactly back friendly. We felt the stress of the hospital stay, the risk that the med wouldn't work, what effect all the fluctuations have on her,  the risk that if by weaning a current medication and the new medication doesn't work, may cause her to have more seizures that are irretrievable, was a risk that we weren't ready to make.

Keep in mind, that we have accomplished getting Roxy's seizures to the 10 per month (give or take) that we used to dream about. But, like anyone, we continue to try. Try for better. Try for 5. Then 2. Then 0. Her seizures are harder now. They take more of a toll on her, and she doesn't recuperate as quickly. So, although she has less, it feels worse. Much worse.Watching her suffer through them is heart wrenching. Which, is why we have made the decision to want to try anything that will help her, and stop her suffering. Including the medication that was presented to us at one time. We learned from a friend whose daughter takes the the med, that we may not have to go into the hospital to do it. With that in mind, we were more open to it.

During the office visit, after going over the usual things, her neurologist said that she felt Roxanne was doing very well overall, including seizure control, and was very pleased. We discussed the tethered spinal chord, and Syrinx, that was discovered last year. We will have to follow them, and do yearly MRI's to watch the progression, if any. She wants a current EEG, which we will try to do during the holiday break from school. When we mentioned wanting to try that medication that she suggested a while back, she said, "Why? She is doing so well. We have achieved the best seizure control she has ever had." We had thought we maxed out on her current medications, including the one that we started a few years ago, one from Canada. It is the drug that we feel has given us the best result in reducing her seizures. The 'cocktail' is the best so far. But, now that she is a bit older, she can use a bit more, so we have some room to tinker with. So we shall. And, maybe we can achieve less seizures now. My lips to God's ears!

So, I left feeling hopeful again. I was reminded that we have reached a goal, and to be grateful for it. We have room to play around with her meds. We don't have to go through the trial and error process again by weaning and adding medications. At least not now. We were saved from a hospital stay. And, her doctor told us that she was at a seminar recently with her colleague, a doctor who has also worked with Roxanne, presented by a genetic researcher from Australia, that a gene was found, PCHD-19, that appears to cause seizures, Autistic behaviors, and severe cognitive delays in girls, along with other factors. During the seminar, Dr. Goldberg said to her colleague, "Doesn't this sound like Roxanne Saxe?" Until now, we do not know why Roxanne has seizures. We've done all the testing available so far, all coming up empty. She said that this discovery, and research is so cutting edge, and we know so much more now than we did, even ten years ago. It is so cutting edge, that we may not even be able to test Roxy for it yet, but she is going to try. She asked us, "Wouldn't it be nice to know why, and put it to bed?" Yes. Yes it would. It may not change anything, but at least we would know why. And, who knows. Maybe in the near future, we will know even more....

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.....