lines in the sand

, , , , , , 3 Comments

In 1990, President George H. W. Bush described the initiation of the Gulf War as drawing “a line in the sand.”

Lines in the sand. We make them every day, for almost any situation. Sometimes we don’t realize we’ve created a line. Possibly, even frequently, we wish we had…. or we hadn’t, drawn that fated line….

The thing is, even if you’ve drawn the stupid thing, you can NEVER go back and erase it. You can’t stomp it out, use a twig to write “I love you,” instead. It will always be a line in the sand. Something on which you refuse to compromise.

The proverbial line in the sand is said to be, “the point beyond which one will proceed no further.” Similarly, a secondary meaning, “a point beyond which, once the decision to go beyond is made, the decision and its resulting consequences are permanently decided and irreversible.” Wikipedia.

I think this second meaning is more of the working definition I’m speaking of, the speculation that you can never go back.

crossing-the-line

Sometimes as parents, we draw a line in the sand for our children. Then the child crosses that line. Now what? You can’t go back and think to yourself, “did I really mean it?”

I know I crossed every line my parents drew, and my mom was considered an artist. I did it without even really bothering to think. If they said ‘No,’ well, then I was determined to hurtle that line. Looking back I don’t think it was such a great thing, just more of a challenge at that time. I’m not going to lie, I was a triple threat when it came to crossing lines (I was also considered an artist, adored calligraphy), which of course does not make it okay. I’m an adult now. I realize my mistakes, right?

The trouble is, that sand is full of watercolor emotions. Love, anger, relentless anxiety, that punch-in-the-stomach kind of pain, and forgiveness too. Anything you can feel, that sand represents. Draw a line in it, and all bets are off. Sand feels like a precarious balance between the conscious and the unconscious; what you want and what you think you want. Physically it squishes through your toes and runs like water through your fingers. Try to hold a wave on the sand. It won’t ever happen.

I feel having children is kind of like sand. You can build a sandcastle and it lasts for a little while but never forever. Kids never stay the same, even though we try to make them. Choices. Eventually they make them. You draw a line in the sand and dare them to cross it. When they do, you can never go back or change your mind. You have to remain strong and resilient like the waves that keep returning to the sand. Parents everywhere hope they make the correct choices.

Just so kids know, there was no instructional manual when it came to raising you. We did the best we could with what we had in our tool chest. I think all parents say that at some point to their kids but it’s so true. Staying the course, making a stand and continuity are the most difficult choices I have ever made. I hope and pray my kids will all be okay, God knows I do.

Sometimes I wish I could shake them and say, “Wake up! Listen to me! You need to hear what I have to say!” All any parent can really do is hope they heard you the first time. We don’t say these things for our health! (I’ve heard my mom say that at least 10,000 times). I heard you Mom. I hear you now. Is it so wrong to just want everything to be okay for your sweet babies? I think not.

I just wish there really was an Owner’s Manual for having a kid. It would certainly list the high alarm rate, the specific safety hazards and unfamiliar features which accompany said kid. It would definitely tell you about any technological advances a future kid could inherently have, basic operating instructions and any peripherals included with your kid, but most helpful would be the step-by-step EZ method of deactivating said kid until trouble has passed.

We parents would be much better off.

seahorse-jpg

ripples and pebbles

, , , , , , , , , , , , , , 6 Comments

People like me, those of us who tote around a diagnosis of MS, will at times appear like you. I’ve heard it said that we resilient souls who have MS are like snowflakes, no two are ever the same.

That may be true but we all understand similar symptoms can sometimes mean the same thing. Its very hard to put into words. Most of us can understand a smooth surface, like a body of water without even the slightest ripple. It’s the beautiful epitome of quiescence. There are moments in all our lives that are frozen in time, a moment where you feel…… well, you feel perfect. But even pebbles can cause ripples in our souls and our lives.

The smooth surface of water, seeing it or languishing in it, creates for me a feeling I’d like to wrap around me as a cloak when I have exacerbations. Sometimes I have to go into my mind to accomplish it. The Ocean, even with waves, is my happy place. I am a Salty Soul at heart. When someone throws a pebble into the water, it sends little waves out in all directions. You just never know how big the ripples will become. Could be nothing at all, a normal symptom such as increased pain and numbness OR it could be more significant. Sometimes I feel someone has tossed in a boulder.

photo-jan-21-7-36-58-am

That’s how it feels to have an MS exacerbation. It’s a giant game of Clue trying to figure out what caused the symptoms to worsen, how to make them better, and if they will ever go away at least for awhile. I find that when I have no stress, my symptoms are miraculously wonderful. Even I sometimes forget I have MS when I’m in my happy spot.

Now some people progressively get worse, this we know is called Primary Progressive Multiple Sclerosis. I fortunately don’t have this kind, mine is Relapsing/Remitting; meaning that I’m fine for awhile, but then it seems I have a worsening of symptoms. I sometimes wonder if I have progressed to Secondary Progressive Multiple Sclerosis. It kind of sucks either way to be honest.

I was doing well for about a year. But within the last two weeks, I started developing weakness on the right side of my body and began falling to the right when I least expected it. I started falling into walls and tripping over things like my feet, chairs, floors, etc. Even my right heel on my tennis shoe showed more wear. This may be the worst exacerbation I’ve had in years. I try not to tell people what’s going on, because I don’t like to complain.

I have an invisible disease, and if you didn’t know me well, you would not even guess I have MS. That’s good I guess, but sometimes people just don’t understand. They forget you have a disease. You don’t want to talk about it. You work on the premise nothing has happened. Inside though, the idea of these worsening symptoms race around in your brain and you pray they don’t get worse. Your colleagues and friends have sustained expectations that you aren’t even sure you could accomplish if you didn’t have MS.

infusion-11-2016

So it is, I am having my second of 3 infusions today. One thousand mg of IV Prednisone (solumedrol). It takes an hour to infuse three days in a row. By tomorrow I’ll be crawling out of my skin. I’ll probably be early to work after I make a new dust ruffle for the bed, weave new area rugs for the kitchen, clean the bathrooms, give the dog a bath and maybe the cats, limb up some cedar trees in the yard, wash my car in the rain, and vacuum it out too! Yuck.

For those who don’t understand MS, I’m seriously happy for you. For those who have friends or loved ones with MS, don’t worry, we’ll be okay! It seems to help to write about it and vent, per se. You can’t understand how we feel and that’s okay. It is nice when someone asks how you’re doing, just occasionally. You can’t know what the symptom of fatigue really is with this disease unless you have it. Urinary symptoms, visual symptoms, muscle weakness, pain, numbness, tingling and I could go on and on. It’s different for everyone and therefore a generalization is not possible. Fatigue is my worst enemy. There are no words.

I do find it comforting to talk with other people who have MS, compare notes, see what helps them and what doesn’t, talk about new medications and ones we have failed. If you have MS and you are reading this, please feel free to email me, I love feedback!

We can’t always have what we want in our lives, but I am blessed with so much, and I’m not bitter about this ripple on the water. At least I’m alive. I know my kids love me and still need me. Hopefully I’ll be here on this planet for a long time, I have so many plans and dreams left to pursue. I’m trying to find a way to live on a sailboat in the Virgin Islands, my happy spot. Until then, it’s life as usual. This too shall pass.

seahorse-jpg

enough is never enough

, , , 0 Comments

I experienced a very emotional day today. As if the rain was not enough, I went to the memorial of a woman I never met. She passed away on her 50th birthday from brain cancer (glioblastoma). She was an amazing woman, as I read daily on Face Book, an accounting by her husband (my ex brother-in-law ~ but in my heart he always will be just that). He told the story of of how she lived, which hit me like the proverbial ‘ton of bricks,’ and how he remembered his last moments with her. I shed tears openly for him, my nephew, and her teenage son.

I found that I also cried for MY son, life lessons, and the insanity that sorrow embeds in your soul.

My son is entangled in the conflict of his life, a contest of good versus evil. A potion of drugs continues to lacerate him from the person he used to be and the addict he has become. As I listened to the pastor, the prayers and the echo of falling teardrops all around me today, I wept too for the boy I raised. When you imagine a shameful family secret called drug addiction, you never imagine it will be a story about you and your child. It never occurred to me that my child could or would be an addict.

With too many young people succumbing to drugs like Oxycontin and heroin, to name only two, I KNOW I am not alone. I feel alone though. I haven’t seen my son in months. I don’t know where he is or how he is living. I do know he is using and I am panic-stricken that he is in the clutches of the most nefarious monster known to any parent. There are too many I know who have lost their children to this monster, the little boys and girls our minds still depict them as.

I am afraid of this outcome for my own son. I struggle to understand addiction and what it means.

As I contemplate the life of a very brave woman, who fought her cancer until the end, I wonder why? Why do some have to leave and others don’t? No one seems to have a reasonable choice or a good reason. She is missed tonight by so many and the sorrow of that is overwhelming. I’m especially heartbroken for her son.

To the ones who leave and don’t want to, who fight till the end; and to the ones who are trying to wipe out the pain with whatever poison or process they can – I don’t think we will ever understand what they are going through. If they could interpret or somehow define for us the agony of their sickness or struggle, perhaps we would be able to grasp a small piece of understanding. I know I’m praying for understanding.

In the same breath, how can we clarify the loss we feel when they are gone or when someone you love is bent on self-destruction? If we could only explain to THEM how much they mean to us, if they could only know in their heart of hearts the love we have in ours, would it make it all different?

My son is not gone, he is alive at least, and I am blessed to have that. I miss and love him more than he will ever know (all my texts go unanswered). A woman I never met is now in Heaven, with the brightest light enveloping her, warming her soul and she knows no pain. When is enough ever enough? The time we spend with our loved ones here on Earth will never be enough, we can never give enough love to our children, and we can never understand enough to make the pain go away before it is irreversible. Are we supposed to want less? Is that enough?

My heart breaks for those we have lost and those who are lost.

I’m just a mom and its all I know how to do.

seahorse-jpg