Sunday, April 6, 2014

Burning...

Rage. Its climbed its way up the ranks of emotions to be one of the foremost things I feel lately. Boiling, churning, mad at the whole damned fricken universe. I want to smash things, throw things, just destroy things. Every time I see my boy laying in bed writhing in pain, I see red. I am so tired of watching him suffer! I want it to be over! I want him healed. I want the doctors we see to fu@#!#$ help him not be egotistical know nothing dickheads that write him off as depressed. Yes depressed. Hes 12 and hes already getting that shit. I want to rip the doctors face off. He has now poisoned the water to any other doctor who reads that report. That doctor had no idea what my son was like pre-misery. OF COURSE HES NOT GIGGLES AND LAUGHS YOU EGOTISTICAL PRICK,HES BEEN IN PAIN FOR A Flippen YEAR!!!!!!!!!!

It wasn't enough for my life to be ruined by illness. To watch everything I  had planned for the future ripped away. No that wasn't enough. I wasn't already barely able to manage handling that. It isn't enough for me to struggle agonizingly from one day to the next. No. Of course not. My son had to fall ill because, you know, I can totally handle it, no problem at all. Watching him suffer day after day, loose his life as he knew it, stop going to school, spending all day in his bed....yep easy peasy, no problem what so ever.

I swear to god I'm going to loose my mind, or have a heart attack. Tears and anger and sadness are boiling under the facade of normality that I wear at all times. Sobs just escape my throat before I can stop them, they are there so much of the time, bubbling up from my shattered heart. There are two tons of bricks sitting on my chest so I cant draw a breath. I'm living in a constant state of anxiety that if I don't keep under control leaves me a  crying, screaming, panicky mess. When I do control it, it still leaves me a panicky mess. Its something my body does well, over produces adrenaline so it takes any anxiety I have and runs away with it, leaving me a shaky, anxious bag of nerves laying in a fetal position trying to remember how to breathe. The times when it took over, snapping my mind and my control, I did scream and yell and clear counters violently, I was called a f'@#king baby. So now, on the outside I try not to show it. I push and push and push it down. I cry and rant and cry some more when I am alone. And that's what I am. Alone.

I even tried to pray again, because this is my son and I would walk through coals to help him. So I prayed to God to please, please, please heal my son. I told  Him I know you have reasons for not curing me, I stopped asking for that long ago, but now really my son???? Please God, please I beg you to heal him. A miraculous and total healing. Pretty please and Amen. Apparently His answer so far is the same one He gave me. If Hes even listening.

Watching your child suffer is excruciating. I am watching him slip away into that world of pain. He rarely smiles. He is a ghost of the child I knew before. I am worried he wont be able to handle it...I'm in constant fear that he will try to take himself out of it. I worry that nothing will help and this is his life now. I'm scared and sick that this is forming his personality for the rest of his life. I worry, I worry I worry. I cannot breathe.
And now I burn. I burn because there is nothing I can do. I burn because this is so unfair. I burn because I hate the world for doing this to us. I burn and smolder and cry. I wish for the end of the world. Because there is nothing else I can do.

Tuesday, March 11, 2014

I Know It's been awhile...

March 11, 2014
 Its been forever, I know. I have no idea why I'm coming back and don't know how long it will last. My life is literally imploding. I am imploding. I just cant get the strength to explain at this moment everything that is going on. If you are loyal, you have seen my Facebook posts full of anguish. Earlier I posted this note there.

 HELPLESS
 In a dream I'm sinking below the water...waves furiously tearing and tossing...shattering me...I fight for so so long with everything in me...until I just cant anymore...I am too battered, sick, weak and so soul achingly weary. I make a resigned peace in my soul to just surrender. The bubbles are so beautiful leaving my body...doing what I couldn't, floating to the surface, releasing my soul...but then my heart that was so peacefully resigned seizes in absolute overwhelming, paralyzing terror and disbelief...he is above me, the monstrous waves in all their fury are tossing him mercilessly, tearing at him, trying to greedily devour him. Our eyes meet. I see terror in those beautiful brown eyes, but even more heartbreaking, I also see sorrow, and scariest of all, acceptance. NOOOOOOOOOOOOOOOOOOOOOOO! NOOOOOOOOO! Oh God not him too. Not my precious son, so young, so much life ahead of him. I frantically start to try to get those bubbles back. I try to move my battered body up toward him, we reach for each other but are so far apart and those waves, those damn waves just wont stop their constant battering. Our hands touch, clasp but I feel him slipping away from me and I am helpless to stop it. Helpless and hopeless I watch him get further and further away and there is nothing I can do to save him. How can I ? I am already gone. I want to scream out to him how much I love him and tell him to keep fighting, I want to, but all my bubbles have left me and the waves rip the words from my mouth, filling me with salty water that should be coming out my eyes in tears. Maybe they are, I can't see anything anymore, its too dark where I am. I love you my precious son. Love you more then myself. Keep fighting, never give up.

My youngest son is sick. He is basically bed bound with severe migraines. He is not able to go to school. He is not able to do much of anything but suffer. We just got back from yet another waste of time appt at Primary Children's Hospital in Utah, where he was seen by a neurologist. Caleb is showing very definite signs of having my ugly congenital disorder. The one that led to my having Dysautonomia and POTS. It is Ehlers-Danlos syndrome. So once again I am being thrust into the very frustrating journey of trying to get help for diseases no doctor wants to admit they know nothing about. I had basically given this all up. I have some support from a wonderful doctor....in California. Its not the best situation having your doctor 1000 miles away, but you take what help you can get. But now it's my son. The hell I thought my life was? Like walking through a flower covered meadow compared to what I am now experiencing. This is hell. Watching your son slip into himself...becoming a mere husk of who he used to be...someone has clawed their way into my chest, pulled out my heart, ripped it to shreds, and shoved it back in. A question has been screaming in my head constantly. The gist of it is this... How do you rescue someone who is drowning when you yourself are drowning?? Have been drowning for so long you can barely keep your head above water anymore? I found this answer in the chaos that is my brain right now. When that person is your son, a piece of your soul that you cannot live without, you just keep trying. There is no such thing as tired, or weak. Or sick. You just keep pushing that child above your head,even when it means in doing so, you go under. Every.Time. You just push and push until your EDS arms dislocate and your going under so many times its hard to get a breath. And when you do emerge, you take a quick breath and use it to scream and scream and scream for help until you go under again. Emerge, take a breath and breathe in into your son if he needs it, then sink again. You do it for as long as it takes. You CANNOT stop. EVER. And you ignore that darkness that creeps closer and closer every time the water takes you under again. Kick it away with every kick to push your child afloat...just keep kicking it away even when you feel its cold icy fingers wrap around first one ankle, then both ankles, trying to claim you. There is no tired. There is no sickness. There is no stopping....ever. You are his only help in this sea of life. You are his Momma. You will keep on until death finally wins. And in that minute, as it pulls me to wherever I am going, I will have to let him go, praying that my screams were loud enough to get someones help, that the very breath from my lungs gave him strength, that all my kicking and pushing let him build up enough strength to start swimming, and screaming for help until someone comes and saves him. I will never give up. As long as I am alive I will be there for him. I will die trying to help him. Because I am his momma and he is part of my heart that is vital to me. My precious boy. I will always fight for you. I love you more then life itself.