Burning up the Phone Lines

After dropping my son at the hospital...as relieved as I felt after viewing pictures of the hospital that almost made the place look like Club Med...I threw up. I was in a terrible mood all afternoon and stayed in my room most of the afternoon. Just after I pulled myself together, he called to beg me to get him out. I could hear screaming and general chaos in the background. Suddenly, it became very clear to me why they do not let parents visit the unit.  Nobody would leave their child there if they knew how bad it could get.

Today, I began the day by calling the Mental Hygiene legal experts.  The news was not good. Four doctors recommended my son's transfer.  All of them worried that he was not ready...not safe.  And yet, he is nothing like the other children on the unit.  Most of them appear to be severely autistic.  Why are there no options for kids like MINE? If you cannot afford the thousands and thousands of dollars a private hospital charges...you are left with very little. The most I could do today was advocate on his behalf.  I called St.James, the local hospital he was transferred from.  I begged them to call Elmira and plead for privileges ..anything that would make it possible for him to get away from the chaos when he felt that he needed to.  They operate on a point system and because Seth has not been there more than a day, he has not earned enough points to go to the "fitness center" or even the dining hall.  He is stuck in an environment unlike anything he has ever seen.  They assured me that he was where he needed to be and told me how I could reassure him.  I don't think ANYthing I say will reassure him, certainly nothing less than "pack your bags, I'm coming to get you".
I finally was able to speak to his social worker. I told her to picture your All American boy.  Sports teams, AP classes, composes music on the piano, a wonderful big brother. The kind of kid that other parents WISH they had.  He's a fantastic, smart kid.  Right now, he has had his reality shattered and needs to get back on his feet but he is NOT out of his head disturbed.  I worry that this WILL make him disturbed! I worry about the affect just a few days in this place will have on him.  One thing is for sure...he will NEVER say another crazy thing in his life (hopefully) after being exposed to the worst of the worst.  Hopefully he will come out grateful for his life, his sanity, his family. His freedom.  But on the other hand...what if this scares him so much that when he really does need help he won't ask for it? What if he becomes afraid that telling the truth will result in him being locked in a nightmare?
I was up all night. So many scenarios went through my head.  Finally, I bought some Advil PM just to catch a bit of sleep. I think about him constantly.  I'm distracted or on the phone all the time and the younger kids have taken to yelling and fighting out of nowhere the minute they see me on the phone.  And therefore, it's very obvious to me that they resent all of the attention being focused on their older brother and need some on themselves.  It's very, very hard for me to be in the present when my mind is with him.  This afternoon, I did some online drawing classes with the girls and we all watched Survivor as a family and ate ice cream.  I think they really appreciated that time together.  I felt guilty for not calling Seth.  I felt like eating ice cream when he is eating bland food that is delivered to him on a hospital tray was a guilty pleasure.  And I replay so many t hings that have happened and try to learn from them, so I don't make the same mistakes with the other children.  Four doctors have told me there is no blame.  They have said to me over and over again that this is an organic, biological, chemical problem.  It does not take away the regret.
I told the Social Worker that I was worried for him and that someone there needed to be his advocate and make sure he knew where he could go when he needed to relax. They have prescribed him anti anxiety medication but he has never taken it and won't ask for it.  And he worries that if he DOES ask for it, that they will just write down that he was anxious and it will be another strike against him.  He needs to be here, with his family and his friends, with everyone who loves him.  And I know that they tell me I can't keep him safe and that this is for the best...but there has to be another way.
Tomorrow I am leaving at 8am and driving to the hospital to meet with the Social Worker. She seemed surprised that I was willing to come at any time, with a moments notice.  I have to wonder what she is used to dealing with. Wouldnt any mother drop everything to come, if it meant her child could be home sooner?  Am I that different from other parents that just accept what has happened and carry on with their lives? I feel like a piece of my SOUL is missing.  There is nothing I would not do to make him well and have him with us.  I am so grateful for the good in my child.  I'm grateful he is not one of the children screaming in the background when he calls me.  I'm so utterly and completely thankful he is not the little boy in the room next door who spends his day banging his head on the wall and I pray for those parents and for that little boy.  I'm proud that my son was not one of the kids stealing the keys from their teacher at the hospital today.  He has not lunged at anyone or tried to choke them.
I will pray for those who have to cope with such things...but pain and regret and loss are all relative and as grateful as I am for what I have, I feel this immense sense of loss and helplessness.  I have a beautiful boy and he is not with us tonight.  And I pray for him as well.

Iron Woman and Darth Vader

Everything is easier when you do it with a friend.
Living with a chronic illness is easier when you do it with a friend. I'm guessing that is why they have support groups but I never wanted to be one of those people that sits in a room every week talking about how crappy I feel.
 I would give anything to NOT have my friend be sick even tho knowing I don't face this alone is making every day just a little easier.Not many people even know I'm as sick as I am because this particular sickness is an insipid beast. It lurks. It is invisible. It is easy to fool everyone into thinking I feel fine and yet have the act of breathing hurt. Knowing that someone really GETS this and that I am not alone is bigger than anyone "normal" would understand. Somehow, my friend Jennifer forces her body to do things I could not dream of doing. She runs marathons. She is an iron woman. She is an inspiration. Instead of being overrun by this disease...I'm beginning to run IT over. This is the influence she has on me.
I was never one to really take care of myself. I forget to take my medication. I baby my muscles because I'm afraid of over exerting and suffering the next day when just a little walking would actually improve things a great deal. I eat all the wrong things. And I refuse to wear the mask. I have refused the mask for ten years now.
THE MASK. That Mother F'ing mask. How I HATE that mask.
But...
I have sleep apnea. It is so extreme that I stop breathing more than 75 times an hour. Apparently, I'm lucky I dream at all when my REM stage sleep is disrupted so often. The cure for this kind of apea is a CPAP machine. And I have one with comfortable little (nauseatingly ugly: see ALIEN) nasal pillows and an ELITE O2 machine hooked into it so I can avoid those life changing near death episodes. Not that the first one did not completely transform my life. But I would really like to see my kids grow up...or you would THINK I would but, until Jennifer went for her sleep study and came home with her very own CPAP machine I was not wearing that disdainful mask at ALL. Ever. Even when I knew it could help. Save my life. Make me a happier, better person. It was pride, really. Ego. I feel like I'm eighty years old wearing an oxygen mask to bed. I feel UGLY. My mother made all kinds of jokes with the respiratory therapist about some very creepy role playing she thought my partner and I could make happen with that mask and although I didnt run out of the room when she laughed about it, I certainly could not laugh WITH her or envision any scenario in which that damn cpap would be sexy. Unless you find Darth Vader sexy. Or fighter pilots. Ok...Top Gun was sexy. But I'm not deluding myself that I'm in the same category as Tom fucking Cruise. I'm not even a GUY for christ sake.
Anyhow...the point of this whole rant is that I've been wearing the mask. Because, Jennifer is wearing her mask. She even sleeps next to her husband wearing the mask. The reason I love Jen is that she is so totally fucking REAL. She does not hide behind pretense. She is who she is and she does not ever seem to make apologies for who she is. I LOVE THAT ABOUT HER! She inspires me to be ok with who I am. So WHAT if I have to sleep with a mile of hose strapped to my head. So WHAT if I feel like hell and cant make my house into something out of House Beautiful. So WHAT if some of the University mothers look at me and think that my dreads are a desperate attempt to fit in with art students half my age. Why do I care what they think?
I love my friends because they TELL me what they think, even if it hurts just a little to hear it. I need to hear it. I love that kind of honesty between friends. I love that I can accept myself because I feel loved. I feel loved and appreciated even when I disappear for a month or two every so often to "cave" and get my shit together. I feel loved even when I fall asleep half way thru a party. I feel loved and appreciated for ME. I can only be who I am. And the women in my life that inspire me to use my bread machine, to grow gardens, to walk slowly and to take my time...and to laugh at myself...those women are keeping me alive. That is what sisterhood is. We hold each other up. We compare notes on our kids and our relationships and somehow we affirm each other at the best AND worst of times.
If I could heal my dear friend I would. In a heart beat. I would make sure she woke up every day without pain. But in the meantime, I'm grateful that God gave me a friend who looks like Darth Vader when she sleeps every night. Maybe we can pose for a picture in our masks someday and find it actually funny. She could do that for me.
I woke up today feeling better than I have in a long time. And she did that for me too.

Out from under the covers

I have woken up every morning this week feeling like an eighty year old woman. This is totally unacceptable to me. It infuriates me. Not only is my house such an embarrassment that I would probably not open the door if I heard a knock, even if I was expecting Adele for dinner, but I can barely keep my eyes open to even catch up on episodes of House while I am resting. I do not have energy to run to the store. I don't feel like running to the bathroom!

What irritates me the most right now is that I have this overwhelming desire to just LIVE. I want to be out in the sunshine, walking creeks or stalking through the woods with my camera. I want to jump on the trampoline with my kids. I want to bust my budget on flowers and herbs and tomato plants and garden every single morning of the summer. The entire world is beckoning to me and my dogs are to run and play. I'M begging to run and play. And I have a thousand plans for the next week. Knowing I will somehow manage to carry them off but with a minimum of grace and nowhere near the effort I should put into them is making me feel postpartum. I had a shopping cart full of plants, including the most beautiful rhododendrum bush I have ever seen yesterday. It was overflowing with huge, succulent white blossoms. But the effort of just pushing the cart did me in and I left it packed with plants in the aisle. Picking out plants warms my heart and I knew I would never be able to plant them when pushing the cart was too much for me.

I have lived with this chronic illness for a dozen years now. I know how to push through pain. I know that if I go for a hike or dance to my favorite song that I will pay for it somehow the next day. And normally I don't care! Normally, I live my life despite the consequences to my body. But this week something is different and I can't seem to stand on my own two feet without wanting to melt into a puddle. I find myself angry at this illness that is claiming my time and the childhoods of my five kids.Anger has never made anyone better. But every time  I look out the window and see the sun shining...I want to cry.

I grew up with a very ill mother. I changed her bed pans and washed her when she needed it. I knew that I could never really count on her to be at concerts or games. It was understood that she probably would not make it to see my wedding much less my prom. And I learned to accept that. She has outlived all expectations and we are blessed to still have her. But I promised my family that I would not let my own chronic illness interfere with our lives. I would be the kind of mother that wrestled and played and attended every single little league game. I have to try harder than many just because I am a single mother. I never let that deter me before. But today, they are serving my favorite lunch in the school cafeteria and it's always a given that I will be there for the turkey gravy and mashed potatoes. School lunches are always fun for the kids and I. Sometimes I paint the nails of Sage's friends. Sometimes I bring extra money for ice cream. Once I brought a bag of crazy hats and did hair, but that is another story in and of itself. All of the kids love it when I come to join them. I'm the fun mother, the silly mother, the mother that listens and makes everybody smile. I do all of the things that I wished my mother had done for me. And I know that she tried too, in every way, to get past her illness and to be there for me. But she had a stroke and she was not living with "just" chronic pain. She was in a wheelchair. I am NOT in a wheelchair and I have refused to let pain get in my way. Before Sage was born and when Isabella was much smaller, I let myself succumb to the depression that often accompanies a chronic illness; especially an illness defined in many ways by severe fatigue. This is not the fatigue that you feel after being up for days or after a long day at work. Or even after a marathon. This is fatigue that makes your eyes roll up in your head. It claims your memory. It stifles your attention. It runs you down like a derailed train and you are nothing in its path. You are under an avalanche of exhaustion. It is a point of pride with me that I overcame the depression that had buried me for so long. I watched my children growing and I missed being part of that. Once I climbed from my bed, so long ago, I was determined to not crawl back in.

I started walking a few weeks ago with a good friend. She seems to understand that I can't keep up with her or climb hills. YET. Last week I was sorely tempted to just stay in bed, but I got up and I walked. And I was glad that I did. If she called me today, I don't think I would be able to do it. It seems to have progressed from the usual ache and fogginess into something of a whole other caliper.

I refuse to be taken down just because I was born without a pulse in my left arm or because twelve years ago a doctor said I had Fibromyalgia and that it would have to define my life from then on. I know that by replacing my thyroid hormones I can up the ante and give my body an edge that by nature it does not have. I know that pain is something that I can learn to live with. All I want to do right now is climb under my thick, soft duvet and dream myself into a place where I am running and climbing and doing cartwheels. But the truth is, that often in my dreams I still feel the pain. If my arms hurt, I dream that I have broken them. If my back hurts, my dream will make up a reason to explain the pain. I cant escape it, even in sleep.

There is a world of things I want to do. I am used to having to fight myself out of bed in the morning. I am used to smiling when the face on the pain scale chart says I should be crying out loud. I am used to saying that I am fine, even when my body does not feel fine. Because essentially, I AM fine. This illness does not define me. I do not talk about it to most people. The parents of my children's friends have no idea that I sleep with oxygen by my bed and take pills before breakfast, since I'm not allowed to eat until I have them. If I were to use a cane, which I have in the past, then people would define me by that cane. I refused to be defined by sickness. I feel that speaking about it only manifests it. And I am not going to stop living and loving and breathing.

Today, I find this is a huge challenge for me. This week has been one of the worst I have dealt with in a long time. I can sit and wonder what made that so. I can complain about the weather and the weird effect it is having on my joints. I can feel miserable and depressed and try to sleep my day away. It's what I WANT to do, God knows. I am motivated to do a hundred and one things today and my body won't let me keep up with my heart. The key today will be to make my to-do list a bit simpler. Carve it down into something I can manage. Instead of sinking into a depression because I cannot do it all, I will give gratitude that I am able to do SOME. I will give endless thanks that I am here and alive and able to experience the all of everything. This is who I am. I am an explorer, a seeker, an adventurer...a woman who can laugh through tears.

I will do it not just for me but because somewhere near me, is a person that can't stand. Can't walk. Can't see or can't hear. Somewhere near me is a mother who cannot have lunch with her child. Somewhere there is a child who needs an extra smile today and always looks forward to MINE. And I will go hear the birds sing and eat in a cafeteria full of screaming, happy children  for THEM.