Spring cleaning and starting over......

"...Its been a long December and there's reason to believe, maybe this year will be better than the last...." This song has been playing in my head for a while now. Its been a long winter and to finally break out of it is a really good feeling...I dont remember seasons affecting me so much when I was younger, maybe its just all the changes that have happened in the past few months are starting to get to me, I dont know but whatever it is, its feels good to take a Claritin, open the doors and feel the sunshine again.

With the coming of spring comes the fun and excitement of spring cleaning, wipe the dust off, throw away the junk that has accumulated over a winter of hanging out indoors, rearrange the furniture and start over. What a lovely idea starting over is...a new begining, wipe the slate clean, and start new. A new resolve, a new direction...Im thinking about getting a new hair cut to go with it....with my hair more than halfway down my back, the chances of that are slim, but its a thought just the same.

Natalie has adjusted well to her vest treatments. She quickly eased into her full 20 minute sessions. She's such a little trooper. She adjusts, adapts, and soldiers on. However, in the interest of full disclosure, I must say that she has found the one way that Mommy will stop her treatment and take her vest off...."MOMMY!! I have to go to the bathroom!!!" She pulls that one at least once every treatment....and yes, sometimes she does actually have to go to the bathroom :) She's so cute when she's trying to outwit me :)

Easter is just around the corner and I am a self professed procrastinator...so this week we are not only doing spring cleaning, but we are also up to our bunny ears in errands that need to be run. So here's to a busy week, here's to spring, and here's to hoping your week is as productive as Im hoping mine will be.

Breathe Easy Eva...

My heartfelt sympathy and love to Eva's family in this difficult time. She was truly an inspiration in the community.

Death.....An outsider/insider/i dont know point of view.

This isn't really a question for me, just a question in general. In my line of work, I deal with the elderly. People who have lived 70, 80, 90 years and are ready to meet their maker, they're ready (usually long before their time) to let go, they've reconciled their past, their present, and have no burning desire to move into the future any more than they already have. They're WWII vets, Marine pilots, Naval Nurses, women who worked as riveters and steel workers while the men we off fighting on foreign soil. They've seen the advent of cars becoming commonplace, they've seen man walk on the moon, the microwave, and yes, the computer. They enjoy the simple goodness of a sunny afternoon and are grateful for things like a touch on the shoulder, a hug, and a moment of our time. They've lived amazing lives and they're ready to rest.....As an outsider looking in, I can handle their willingness to go "home".

By the same token, there are young ones that fight like fire. They're 50 somethings 60 somethings and they don't believe its their time and you can see their desire to move on, not to see Jesus, but to rehab, to go home, to make my workplace only a memory, I cant blame them either. But even if that never happens, compared to 6 years, compared to 26 years, heck even compared to 36 years, they've had a fair shake, right? wrong? How many years are enough? How long do you get to live before its fair that you pass away?

I follow Eva's blog on live journal (65 Red Roses) and I listen to (read) her comments, unrelenting "Eva don't give up!" "Eva we need you here!" "Eva just breathe!" and my heart goes out to her. I don't want her to die, I don't want anyone to die, she's too young...its not fair. But sometimes people just need to hear that if they need to let go, if they don't want to fight anymore, if they are tired, its okay....its okay to let go and we who are left behind will be okay somehow, somehow we will manage, day by day, moment by moment, we will find a way, even though we don't want to, we will find a way, even if that "way" is nothing more than opening our eyes. Being in my line of work, I deal with death quite frequently. It truly is a beautiful thing to watch the struggles and pain of this life disappear, no more pain, no more fight. Of course we cry for ourselves, we love our people, we are quite attached to them, they're part of our family, but removing ourselves from that, and looking at it from a medical perspective, it was time. It was okay to let go.

So is that the answer? When medically you've done everything that you can, is that when its okay to let go? what about before that? what if you just don't want to be tortured with tests and procedures anymore, you refuse treatment, you sign a DNR, then is it fair? then is it okay to let go?

My grandmother passed away 7 years ago and there is not a day that goes by that I don't wish that she was here with me, what would she say about certain things? I think about how much she would love Natalie's personality, how she would adore the young lady Caitlin is becoming. I would love for her to see the person that Ive become, I was so much different 7 years ago, I wish I could have made her proud when she was still here. Its not okay that she isn't here, Ive learned to live without, but its not okay.

The truth is that human nature tells us that its never okay, there will never be a time that we can view a death as a nonevent, it will always impact us negatively. Once we have lost someone close to us, we are never the same. So whether we fight for our loved one, we fight for a friend.....we will always fight, but we fight for ourselves. The terrible, gut wrenching, make you puke truth is that its only for ourselves that we fight, WE don't want to lose them, WE don't want to endure the pain, the change, because God knows, the ones we lose are better off than we are, there is no pain, no tears, no struggle, no fight, only peace. Isn't that what we all want? Peace for our loved ones who struggle, just peace.

Natalie:"There's a monster under there!"

Caitlin:"There's no such thing as monsters, just people dressed up like monsters.Then there's people like Scooby Doo who catch them and bring them to jail for scaring us."

Its moments like these, laying in the dark, between my two little ones, that I have to simply lay it all aside. Forget the worries of the day, forget what has yet to come, forget what has yet to be done, and just be. For a moment I bask in the beauty of the world through their eyes, grateful that they have each other, forever grateful that they were given to me.

Children are a crazy, amazing, beautiful, worrisome, hair graying, scary, rewarding adventure. I'm happy to have been invited on this ride.

Midnight fears of an overwhelmed Mom......

When the lights are turned out at night, when everyone is in bed, I usually am the one sitting awake in the glare of the computer screen lights. I don't stay up because I'm not tired, I don't stay awake because its fun, or because theres anyone online...I stay awake because I need time to process the events of the day, to decompress, to unwind. I listen to Natalie cough and breathe, waiting for the slightest clue that we might need a trip to the clinic. I make sure Caitlin is covered, comfortable, and her TV is off....she constantly leaves it on and you just cant get a good night sleep with the TV on. I stare at the toys laying around that I'm pretty sure I asked someone to pick up, listen to the dishwasher run, stare at the pile of laundry, go room to room and look at what lay before me for the next day.

When the thoughts of what is undone have been processed, filtered, and left by the wayside, other thoughts creep in. How did we end up here? Why did we end up here? The fights that occur, the ones that come because I feel like I'm being pulled in a million different directions and the only result is that life is maintained, never improved. I want to do fundraising, I want to be the "fun" parent and do everything the girls want to do, I want them to have the perfect everything, I want the house to be spotless, I want the laundry to be done, I want the cooking and the grocery shopping to be done. Regardless of the fact that I prefer to see myself in the "I am superwoman, I can do it all" kind of light, that is simply not the truth, or perhaps it is the truth, I can do it all, I just don't feel like I am doing it right. I want someone to pass the buck to, I want someone to take the pressure off, when the truth of the matter is that the only one applying pressure is me.

I want my daughter to be healthy, I go to great lengths to make sure that everything possible is done to keep her that way, but I have another daughter, a 9 year old who doesn't have CF, who needs her mother just as much as Natalie does. I feel guilty because Natalie requires so much attention, so much time, not just because of her disease, but because of her age too.

Caitlin is coming into a sensitive time in her life, I remember being 9. It was hard, it was confusing and I needed someone to pick me up and show me that I was okay, everything was okay. I want to make sure that she knows that its going to be okay. Shes a spunky little thing, with all the life, energy, and imagination that comes with being 9. She's too mature for her age, seen too many things, been through too many things, sometimes I wish she would relax a little more, she worries a lot. Shes outspoken and insecure, she's protective over her family (especially Natalie) but opinionated about the choices that her father and I have made. I encourage her opinions, I encourage her to speak her mind, she is a people pleaser, always looking out for what others want, nearly to a fault...I'm trying to break that habit before its too late. I want her to know that her thoughts, feelings, and opinions are just as important as everyone elses, Its taken me 30 years to figure that out.

But when it all comes down, when the day is done, there is only so much you can do. I pray every night that I am doing enough. I keep telling myself that tomorrow will be better, tomorrow I will do better, do more. I think my children are happy, they have a lot of privileges and things that I didn't have, I tell them that I love them over and over throughout the day, I try to make them happy and I hope they are. But I have very real fears that I am running out of tomorrows, running out of time to make it better, to prove (even if only to myself) that I am doing EVERYTHING possible for my children. Caitlin is getting older and Natalie's disease is progressing. When does this end? Where does this end? Those questions make my skin crawl, make my heart hurt, and tonight those thoughts just cant be entertained.

Vest System Day 2.....not a total disaster.

Well, at least she didn't scream when she saw it this time. We got it on, she started to fuss a little, but I kind of get the idea that she's only fussing because she thinks shes supposed to. I only say that because when Natalie really and truly doesn't want to do something, she is strong, she fights and she is relentless. Today, she was just kind of whining. Hopefully that means that she just finds it to be more of an inconvenience than a life altering, emotionally scarring event. We tried singing, we tried, making noises, we even tried the Crayon and paper idea that Piper had, but that just frustrated her. We got through an entire five minutes before she started to have a nervous breakdown. The MD said it was okay to do the vest in short increments until she gets used to it. So here we go, working our way up....

The Vest System......better known as Exorcism in a Bag :)

I had hoped to have some pictures tonight, proudly displaying Natalie's first vest session, but there were no pictures, no smiles, it was just a mess. Its not funny, its really not, but Im trying not to be so incredibly frustrated, hence the title of this evenings blog. Today's meeting with the Hill-Rom rep and the training session that followed was a total disaster. My poor baby, she just screamed bloody murder. When I went into this whole thing, the idea was for Natalie to get better airway clearance, and she did, just not from the vest. The rep turned it on, and she screamed, not just a regular cry, an all out, top of her lungs, demon exorcism scream, it was like nothing I've ever heard. Actually I have heard it one other time, her first nebulizer treatment in the hospital she did the same thing, we were all in tears. This time I didn't cry along with her, I did my best to reassure her, to try to focus her, to talk about hugs, and making funny noises, but she would have none of that....It was heartbreaking, frustrating chaos.....Here's to hoping for a better session tomorrow.