New Monster in Town?

Where to begin with this entry. I've come on here several times and started to write but shut it down. How do I write anything after "Losing Me?" It was upbeat, so happy and full of life. This post is not any of those. It's okay though I'll get back there eventually, but right now it's not very sunny in my world. It is mostly cloudy with occasional downpours. I'm trying to be fine and life is going on around me with good things here and there, but inside my heart is cracking. The sunshine isn't always going to be there and the doom finds you. It finds everyone at different times throughout their life, because that is life. No one escapes its cruelty, hardship and unfairness. No one. Maybe you can hope your doom will be better than someone else's but it'll still be doom.

I started this blog to be real with people. Anyone can do the fluffy stuff and pretend all is dandy, but not everyone can be real. Discuss the things people don't want to admit or talk about because someone told them they should find the good in everything. Someone told them they shouldn't talk about the bad things because their life could be worse. Guess what? Anything could be made worse and before you find the good in something, it's okay to acknowledge the ugly bad that's staring you in the face. This blog is for those of us who admit our misfortunes. Throw a good tantrum about them. Wipe off the snot and tears on our shirts, clean up the mess, make a new plan, and come out of it disheveled but tougher. Some negativity is bound to set in and being a mad warrior is better than being a sobbing one who gives up on the battlefield. Or worse, the idiot that runs around smiling pretending they're not really in a battle and there really isn't an arrow sticking out of their thigh, because they're trying too hard to stay positive. 

I think a certain amount of madness has to be there so you can fight on and be the hero. As the mom you get to be your child's first hero. We completely take care of them better than anyone else can. Mom's also have a kind of magic to their being. We can simply cradle our babies, softly tell them they'll be alright, kiss their owie and make it all better. Just like that. But asthma messes with my mommy magic. I guess that means I have to be more creative. How I wish I had some powerful magic to make it all better for good. 

Where is this entry going? 

I'm getting there, but first let's get you up to speed. For starters, we lost the trial run without Singulair. We made it one month, ONE, and a virus hit. After all this time it still shocks me how one little cough quickly turns into terror. Everything is fine one minute and the next I feel the panic, anger and frustration as I realize the doom is hitting. I grab for the phone, make the call, start up the emergency meds and we enter into asthma flare-up mode, which is a form of Hell for all of us. A Hell I've gotten used to somewhat, but a Hell nonetheless. So, instead of two maintenance meds, Calvin's veins are pumping with Flovent, AND Advair at a doubled dose, Flonase, Singulair, Benedryl, Albuterol and the dreaded Orapred. Our goal, my bright idea blew up in my face. Turns out Singulair is magic for him even if it causes unwanted side effects, it saves him from the Orapred. Singulair really is the lesser of two evils, even if there are behavior issues, because wouldn't you know breathing ends up being more important. Yes that was sarcasm.

I want to scream, I do scream in my pillow or when I'm by myself in the car. It's ridiculous but necessary. The way I see it, it's my warrior cry. I am fighting a monster that occasionally attempts to kill my child, therefore occasionally I need a good scream while I fight for Calvin's survival. Dramatic I know, but there is nothing calm about my child struggling to get enough air, or seeing him struggle to thrive. It takes all I have to be calm and cool during these rough patches. They're ugly, defeating and they most definitely suck.

But like I said, I am somewhat of a warrior and I don't plan on letting the monster kill me or my kid. So fight on we will. Bring out a new blueprint and let's start over. The new plan goes like this... Singulair is back, Singulair wins my friendship but we needed something better because Calvin's body can't be run on all these meds and because of that we turned to surgery. The tonsils and adenoids came out three weeks ago. That ordeal scared me but he actually did really well. Leading up to the surgery was difficult because apparently asthmatics need two pre-op appointments. One with their pediatrician and one with their specialist. Then they have to go on Orapred for three days before surgery to ensure the airways stay open during the operation (talk about heightened anxiety with that bit of knowledge). We had to bubble Calvin up and he missed a lot of school but I did enjoy extra snuggles and time with my boy. We made it to surgery, he came through it and did well enough recovering.

Sounds like things are finally getting better right? I thought so too, then I got hit in the face with a burrito. Now it appears there could be a new monster in town. And this guy's worse than the one we've already got messing up our life. He's sneaky and evil and nobody seems to know much about him which makes him even scarier. His name is PCD. 

Just before the surgery I got an email from my best friend. I love that girl. Anyways, she had come across an article on Primary Ciliary Dyskinesia (PCD for short) that made her think of Calvin. She also sent me a link from the American Lung Association with further information on the signs and symptoms of this rare disease. When I started reading about PCD I realized I had already heard about this. Calvin's ENT had mentioned testing him for it on our first visit. I wasn't well informed yet and it sounded scary, but I didn't know her well enough to know if I should take her seriously, so I sort of disregarded it and focused on the surgery. 

Why did I initially ignore PCD? For a couple reasons... it's scary to think about, there are more tests involved, one of which is a ciliary biopsy, then there's a nasal nitric oxide test and genetic testing. More tests mean more money. More medical debt on top of medical debt. Besides, prior to the ENT, no doctor had ever mentioned this to us and she'd happened to mention it on our very first office visit. I didn't know if I could trust her yet. Looking back she is a brilliant doctor and her thought to rule out this rare disease is very valid. The longer someone with PCD goes undiagnosed, the worse the condition gets and here's the scary word, it is degenerative. That word stabs me in the chest. To give you a briefing, a person with PCD has a problem with the cilia in their mucous membranes. Their body has a hard time clearing out mucus and debris causing difficulty breathing and recurrent illness. Over time it damages the trachea, lungs and sinuses. This is a newer disease so diagnosing it isn't easy, it isn't on all doctor's radars either and there are a lot of people walking around misdiagnosed. It ends badly for them, with lung transplants and/or respiratory failure. 

If Calvin ends up having this PCD, the treatment plan would be more invasive and costly on a daily basis. The whole thing is just a lot scarier than asthma. If it's just asthma, Calvin could still die from respiratory distress/failure when he gets sick, BUT at least what's happening in his body wouldn't be degenerative, and that makes it easier. Now throw in PCD and there's damage happening every time he gets sick. In any case, there is no choice in how we proceed. Calvin's history, severity and atypical asthma have always screamed, "are we missing something?" We have to get him tested for this PCD. It has to be ruled out and I couldn't live with myself if I didn't make sure. I can't simply ignore it. Up to this point I've hated asthma but now more than anything I'm hoping that's all he has. 

Sure, it could be worse. I didn't lose my child in the Oklahoma tornado and he does not have cancer. But he could still die from asthma and he could definitely die from PCD. Should I go there? No. But it's a reality that's there for him more than it is for your garden variety "normal" child. Calvin seems so normal. He can run around on the playground, he's smart and witty. But underneath that handsome, sweet and funny boy is a very dysfunctional respiratory system messing everything up. I feel we're so close to normal sometimes and yet so far away. Normal is right there, he's playing, laughing and looks completely fine. Then normal is slipping right through our fingers as my boy gets sick again, and again, and again. I could lose him one of these times and it hurts to go there but you can't always stop your mind from going where it will. It's a kind of cruel taunting. It's like the proverbial roller coaster ride, except ours isn't in the best shape and I can't help but wonder if there's any track on the other side of the hill. We're mostly retching in our seat screaming to get off. I want stable and I want the asthma monster gone but as we all know from watching Dexter, there will always be monsters. Some are worse than others.

While I wait for these tests and the subsequent diagnosis, I sit here wishing I could choose the monster. As much as I hate asthma, it is a less destructive monster than PCD. But whatever monster we end up dealing with, we WILL take it on and do everything we can to subdue it.

We've come through some really bad stuff with Calvin. We'll go through more bad stuff, it's how it is. Monsters don't play nice and they're very sneaky. I honestly do believe when things are good, when the sun is shining, I know it right away and I cherish it. Without the monster lurking in the background, I don't think I would have cherished a normal day. I would've looked for something much fancier. When all I want now is for my little boy to breathe easy. However that needs to happen, so be it.

Losing Me

The other day, I turned thirty. Just like that, the big three with a zero attached. It hurt and I felt stupid to admit it was hurting. My inner monologuing had been a train wreck leading up to my birthday... "How did this age creep up on me? I'm not ready. Oh Hell no, there are lines on my face, premature wrinkles setting in. I've been frowning too much. My joints are achy. Pretty sure that cellulite's not leaving my butt. What happened to me? I'm not sure I know who I am. How'd I let that happen? What have I accomplished for myself? Why I am so unhappy about this birthday? Seriously what is wrong with me, I'm still youngish. Stop throwing a fit. Thirty is nothing. No, that's a lie, thirty is something. Thirty IS older. I don't have myself together, I think I've malfunctioned. Who cares about a stupid number. I care. I had plans, and what did I do with those plans?" Then the answer hit me like an anvil to the chest... I had forgotten about myself and here I was turning thirty. I had broken my own heart. I missed me. 

What the heck happened? How did I get here? Somewhere in those twelve years after leaving high school, I had let myself fade into the background. I hadn't fought for me, instead I was fighting for my little family and surviving life on an autopilot mode. I am an artist, I can make beautiful paintings with oil pastels. I have brains in my head. I graduated Salutatorian of my class. A four year scholarship anywhere in the state of Wisconsin, and what did I do with it? I let it go and gave it to my best friend, who was the third runner up. She deserved it too, but giving that piece of paper away is a big regret of mine. I had worked so hard for those grades. But you see I found Brett, my sweetheart, much sooner than I expected at the blissful age of sixteen and I didn't let him go. You couldn't pry me away from him. I fell hard, fast and madly in love with this tall, blonde haired, blue eyed, seventeen year old. I was marrying this man. I walked down another aisle two weeks after my high school graduation. I got a different piece of paper I'd never regret. I love him. He's my favorite person in this whole world, but he can't be my everything, and this is where I started to go wrong. I was supposed to keep "me" somewhere in the "us." 

Why did I give up my scholarship? Brett had already started college, in Minnesota. We couldn't afford for both of us to be in college at the same time and it would have been dumb/bad for him to drop out with only one year left. Our middle class parents couldn't foot the bill for college or living expenses, we had to bear the brunt of it. They helped where they could but we were mostly on our own. We had a tough decision to make but it was made easier by Brett only having the one year left. If I worked and got him through that last year, he'd get a good paying job with his degree and he'd be able to put me through college. Well it didn't work out that way. September 11th happened and the economy tanked. He struggled to find a job. I worked miscellaneous jobs and did the best I could with the skills I had. When he finally did get a job in his field it wasn't the big money it should've been. The economy sucked, remember. There was no money to put me through college. Then the kiddos happened. I was quite the fertile mertile and birth control options failed me. Now I was a wife, co-worker and mom... It's wicked crazy with all that chaos. It was easy for me to fade away under these other names. 

Although all this happened earlier than the current norm, I wouldn't change how the past unfolded. It's my life. My stories. I've learned lessons from them and wouldn't be where I am without them. I would marry Brett all over again at the young age of eighteen. I would have my babies in my early twenties, because I can chase them around the playground without busting a hip. I got to be that young mom whose body snapped back to normal after poppin' out a kid. I am one lucky woman to have what I have. I know that. But then why was I finding myself so unhappy at the age of thirty? 

I had been crying, and crying is something I fight because I hate it. It gives you a headache, you feel defeated and weak when it's over. Your face gets all red and puffy, you can't breathe out of your nose. You waste a lot of Kleenex and the whole process is ugly. But cry I did because the realization of losing me, had slapped me in the face. I was angry with myself and there was no one to blame but me. I let it happen. I let the unfortunate events in our life ruin my plans, I gave up on me. I focused on my husband and children. I lost the carefree and happy girl with the whole world at her fingertips, and all the wonderful things that felt possible, were gone. It's really easy to lose yourself because this life we live in is full of itself and if you're not aggressive, you will be left in the dust. You'll get lost in it, you'll only be a wife, co-worker, mom, daughter, sister, and barely a friend. You'll try be everything to everyone but yourself. And you'll suck at it all, because you'll never be everything to everyone. That's impossible, so you're left feeling inadequate and if you'd only love yourself, the rest would figure itself out and fall into place. 

I had begun to hate the world at some point in time. You would think being married to my favorite person, and having two beautiful kids would mean I was living the happily ever after ending. We don't live in fairytale land. We live in the land where you're putting flowers on your child's headstone. You're moving away from family and friends because you have bills to pay. You're making a house payment in Minnesota AND paying rent in Illinois to sleep in a dingy one bedroom apartment on the floor because the airbed popped and you can't afford to replace it. Meanwhile, your heated waterbed sits lonely in your vacant house because you can't live there, the jobs aren't there anymore. You're commuting an hour and a half each way with a nineteen month old and a six week old sitting in the backseat of your two door Cavalier. You feel the unfair, helplessness, stress and heartache of dealing with your child's chronic disease. We live in the kind of land where in the course of two weeks, Brett had an electrical fluke with his heart causing him to blackout in downtown, falling face first and busting up his front teeth. A lady crashed into our car because she forgot to brake. The kids got the stomach flu for the umpteenth time, and Calvin barfed all over the rental car. There is no mercy in those events and all of them, were out of our control. Bad things happen in life. It's no mystery how this would change a happy and carefree girl into a hermit, hiding in her shell. I had been warped and tainted by all the bad lemons in my life. I had turned into a woman afraid of what was next. Afraid to be herself because maybe I was lame. It had been easier to live pleasing other people, that is, until it hit me this way of living life really sucked for me. I would never be good enough to anyone if I couldn't be good to me. But you don't love yourself because no one explained that to you or you didn't listen to that someone if they did. You didn't hear them. I can hear me now. 

It's hard to fight for yourself in this fast paced world. Especially when you're a mom. But if you're going to really live in the moment and enjoy life, you have to make room for you and what makes you smile. What makes you laugh. What makes you thrive. I've missed living. I hadn't figured that out until now. I'm smart, creative, active and I have a lot to offer but no one sees me. I stay in my house, I clean the toilets, do the laundry, get the groceries, run the errands, transport the children, check the homework, declaw the nails... I do the mom stuff, the wife stuff, the unnoticed. There are no awards, rarely a pat on the back. No one thinks, hey that's Nicki, she's an artist. She's really smart. Instead they see, she's a mom. She's married to a talented Art Director. People are shocked to find out I am actually more than that. People are shocked our kids artistic talents aren't only from their father. Again, my fault. My fault for letting the wife and the mom roles take over. My fault for letting go of me and fading into the background. 

Slowly things have gotten better. Seven moves later and years of struggling, we are finally floating on a piece of driftwood. I no longer feel like we're treading water trying not to drown, barely keeping our heads above the water. I have hope again that I can be more. I need to be more, for me. I can't let my marriage and my children define me. I have to find a place for "me" in my life. It's a teeter-totter. A great balancing act. I've had to put myself aside at times, everyone does, but you should never let yourself fade. 

I've been here all along, I just didn't make myself a priority and that is why I found myself sad about turning thirty. I wanted to be happy again, really happy. I didn't want the weight of my defeats dragging me down anymore. It took a couple of different things in my life to bring the fact of my malfunctioning to the forefront. For one, this was the first year I had time to think. The kids were both in school full-time. Prior to this, I was either working full-time in a carpeted cubicle or being a full-time butt wiping mom with sweet little birdies chirping in my ears all day long, there was no time to think. Second, I had a major surgery on my abdomen. I couldn't move much at all for a couple months. I had even more time to think. I didn't like the grouch or the worry wart I'd become. Third, I started noticing my negative characteristics in my children. My anxieties, my unhappiness, my fears, my worries... all there in their little faces. Fourth and finally, turning thirty was about to happen. After the anvil and the crying, it was time to change. Now or never. My life was passing right in front of my body and I was standing off to the side worried about the repercussions of the past and fearing the future. I was not here in this moment. I was missing it, missing the good stuff, because I'd been missing me. I needed to snap out of my cloudy haze, find the sunshine and embrace it all.

The steps to finding myself don't mean solely finalizing that big college degree, although that's a part of it. My first step in the right direction was when I asked Brett to take a day off work because I wanted to do something special and different to celebrate my big thirty. I wanted to skip the cheesecake and shopping. We were going to climb some rock walls. For the first time in my life, I went rock climbing. We climbed the walls at Vertical Endeavors until our fingers were raw, our limbs were shaky and we were completely exhausted. It felt exhilarating. I was happy, so happy. It was a fun date with my husband, which is a rarity for us, and the babysitting was free because the kids were at school. The place wasn't crowded because it was a weekday. Everything fell just right and I was living again, I was present in the moment. Rock climbing is my new favorite thing now. Had I never tried, never asked, it would've never happened and I wouldn't know how much I love it. I plan on climbing actual rock walls out in the wild before I die. There is so much living to be done. 

So did you live in today, or were you somewhere far away in the regrets of your past or the what ifs of your future? Are you sitting back waiting and fading into the background, thinking someone else will save you? YOU need to save you. I'm not in the background anymore. I'm not missing me or missing it. I am finding the time to do things for me. I am happy. Life is too short to be caught up in the yuck. I do have creases on my face but the ones I see now are not the frownie kind, they're the smile lines. I want to keep them and make them worse. Life is here, life is now. You have a choice and it's hard to pull your head out of the clouds but once you do, the sunshine feels really good. Or if it's the umbrella you're holding, like I've been holding. Put it down. It aches to hold it up all day, every day. Embrace the rain when it falls, dry yourself off when it's over and enjoy when the sun comes out. Without the rain, we wouldn't truly feel the sun. 

Holding an Umbrella

I brought Calvin in to see his asthma Specialist last week, because I thought I had finally broke the code to managing the monster. All I needed was the green light to move forward with the new and improved treatment plan. The simple thought was to remove the drug Singulair, add Zyrtec, and replace Flovent with Advair. Simple right? No, I am not that lucky.  

Now why would I want to take him off Singulair, the only drug that stops the body from having an allergic or triggered asthmatic response? The drug that prevents mucus from clogging the head and the chest. The drug that is better than your regular antihistamine. I won't bore you with the scientific details, you can google it. Just know that it's a drug in a class of its own, very effective in treating allergies AND asthma. BUT this unique drug comes with a known side effect. It can cause aggression and behavior problems, which is something we've seen in Calvin and have suspected Singulair to be the dark passenger. We had done a trial of our own when Calvin was four, without the doctors approval for two reasons. The drug was expensive (no generic at that time) and we wanted to see if his behavior would improve. It did. We had three excellent months until he got pneumonia, and then we were blamed because we'd taken him off of Singulair without approval. Breathing is more important than behavior. Understood. However, he's in first grade now and aggression doesn't fly in school. Since Calvin has actually been in a somewhat stable place for the last six weeks, experimenting again is an option. I'm just going about it the right way this time. 

Now for the maintenance steroid inhalers. Swapping out the Flovent for Advair seems like a no brainer because the drug is seriously a magic potion. When Calvin inhales this, it's as if he doesn't even have asthma. He is six years old, so he can and has taken it during a respiratory illness, so why not on a regular basis? I'll get to that in a second. First, what makes Advair better than Flovent? What it comes down to is higher concentration, so it's a stronger dose of steroids. Two puffs of Flovent is equivalent to one puff of Advair, with the addition of another drug (the secret ingredient), which is what makes it magical unlike the Flovent. Now when Calvin is sick, he's taking three to four puffs of Flovent, so it only makes sense to switch to Advair anyways. Not so. Apparently this drug is for adults, it's an adult dose. In children, it has been known to cause stunted growth. This has already been a concern for us. Calvin has been in the 10-30th percentile for height and weight, since he was a baby. He hasn't ever hit average. A child struggling with a chronic disease cannot grow properly because all their energy is being used to stay alive, not grow. If you find the right balance of meds and stabilize their condition, that child will be able to grow. However, if you overmedicate, the steroids will prevent growth and cause a host of other problems. 

My green light was NOT simple after all, it would bring the high potential for ugly consequences. It feels so much like a bad game. I'm trying to win but my crappy cards are making that difficult. Yet I refuse to lose, so how do I cheat this monster? There is nothing simple about changing around meds. If I make the wrong move, I could easily hurt my child, if I don't move at all, I hurt him too. Any way I choose, I feel screwed because that is what chronic diseases do, they screw with your life. We're stuck with making tough decisions. Should we try it for a couple months and should it work then what? We'll risk him being shorter and having the complications that come along with being on a higher dose of steroids? Or do we go back to the behavior problems and more frequent/dangerous respiratory illnesses?

I want to cry and I can't. I'm too angry, hurt and overwhelmed to cry. I want to fight this beast for good. Everyone keeps saying, he'll grow out of it. I've heard this for so long and it's just a faint hope inside me. It should happen, I hope like crazy it will happen but for now, for now it's scary and it hurts like Hell. This could all blow up in our faces. If he gets ill and doesn't pull through it well enough, then we have to put him back on Singulair. So, I guess we just wait and some of the answers will make themselves known. I hate waiting and wondering. Either way this goes we're stuck with the consequences and I don't know that there is a lesser of two evils to be found. It's easier when the choices are taken away from you, going out on a limb to experiment is much harder. Especially when you're playing with the breath your child takes. 

Here's the worst part of all this, he's becoming more aware of what's going on. The things being said and he's afraid. Who wouldn't be? Now I have a whole other challenge to deal with. I need to be calm, to keep him calm. I need to be strong but I'm barely keeping the fear at bay myself. While the Specialist and I were talking, Calvin interrupted with a frightful voice, about to burst into tears. He was panicking over the big words the doctor was using like "chronic diseases." Recently, Calvin has become very afraid of death because he knows people have died from complications of asthma. I grabbed him and put my arms around him, all the while biting the inside of my cheek to stop myself from losing it. I reassured him, he's going to be fine, we're here, trying to make him better. I haven't let him die and I don't plan on letting asthma win. I know those words are scary but the Specialist and I are taking good care of you. Calming your child when you feel like a bomb is about to explode inside yourself, is next to impossible. But as hard as it is, you have to make it happen even if that means biting your cheek so badly it bleeds. Later on when you've locked yourself in your bedroom alone, you can shove your face in a pillow and have a good scream. You do not let your child see or hear your fear. You don't get to be selfish with their chronic disease. You have to be strong for them.

I need to clarify something. Past entries may seem like I'm disappointed with the doctors. Sure there have been frustrations and disappointments but they aren't perfect, and they can't be, especially when they're dealing with imperfect chronic diseases. I feel so much love towards Calvin's Specialist because he's stood by us all these years and gotten us through the worst. He knows us, he cares and he's there 24/7 with his cell phone. He's the hero in our story, saving my child over and over again and complimenting me on several occasions for knowing my stuff. He has said I'm an honorary asthma specialist. Hearing a doctor tell you, you're doing a good job, is a huge relief. As a mother you stress practically every second about what you could be doing better for your child. Give them a chronic disease and the mother feels like a failure. 

To sum this all up, we've decided to put my plan into action for up to three months. We wait and we decide as the pieces fall. Calvin has finally been in a good place since mid-January, so this is a perfect time to play around with the treatment plan. In the meantime I'm trying to deal with the uncertainty, the risks to my decisions. This is not my forte, I like to be in precise control. I hardly let my guard down, I rarely enjoy our kind of normal because I've forgotten how to. Someday that will come back, but right now I'm haunted by the scares we've had in the past. When you've tried your hardest only to watch things fall apart in an instant... It takes a long time and maybe never, to recover from that terrifying feeling. So, it's hard for me to actually enjoy when the sun is shining in our world. Instead, I stand like a fool holding an umbrella in the sunshine, waiting for the rain. The rain that could be months away. This is my struggle and all struggles come to an end at some point. I am hoping for a happy ending, one in which he grows up strong physically as well as emotionally, from all he's had to go through as a kid. We deserve that happy ending. Only then, will I fold up my umbrella.

Our Invisible Child

This day marks a hard anniversary for our family. Nine years ago, on the ninth of January, our first child was born and our first child died. This year is proving to be a more difficult one. Maybe because it would have been her golden birthday, or maybe because it's just difficult. 

Lucy. We named her Lucy. Some days I accept her death and others I don't. The days go by as if nothing happened but something very big happened to us. I was twenty weeks pregnant when my amniotic fluid began leaking. They told us we had to deliver and they told us she would die. I could have the choice of holding onto her until my body naturally let go but that wasn't a guarantee. The longer the amniotic fluid leaked into my body, the higher the risk of septic infection and death for me. However I decided to continue, the doctors told us the baby would not survive. Without enough amniotic fluid, she could not develop lungs, so even though her little heart was beating inside me, she would not live. Labor was induced and it took three painful days for my body to let go. She had a heartbeat right up to the very end, I could hardly bare it. I felt like I was killing her. I would have rather died with her, if it weren't for Brett.  

That first night in the hospital, I couldn't sleep. The shock of the news was too much. Exhaustion had found Brett and he had drifted off to sleep in the cot next to my hospital bed, leaving me to my ugly thoughts. I remember how I couldn't stand being in that bed anymore. I had gotten up and went to the bathroom for lack of anything better to do with my time. On the way back to the bed I saw the rocking chair sitting by the window. The overwhelming thought hit me, the awful realization that I'd never get to rock my baby, never. I stood there and stared at it. Then I finally decided I was going to rock her, I was going to rock my baby. So, I sat in that rocking chair for a long time, with my hands on my belly. I held her as I rocked and cried. I didn't want to stop because I knew this would be it, she'd be gone and I'd have nothing to hold. But exhaustion finally took over and I found myself crawling into Brett's cot to spend that night. Just the three us together on a tiny cot, before they induced labor, before she was gone.

Years later these details are still with me and my initial fear of forgetting them won't happen, because it cannot. It's impossible to forget how it had just been Christmas and we had gotten all these cute little things for our baby. Only to watch Brett, a couple weeks later, packing these things away and crying so hard his shoulders shook. They would never get to be her things. Then, how could I forget the way he held her after she was born. He had ever so softly bounced her up and down, but quickly stopped and this very sad look took hold of his face. 

We'd entered into a depth of sadness so profound we were connected. Yes, there were sad family members and friends around us but it wasn't the same sadness. It wasn't THEIR baby, THEIR life. In moments of grief deep as this, you only find solace with those who have been in your shoes. They're shoes no one wants to wear but sadly some of us have to. You can see how an event such as this would not give you the luxury of fading away with the years. Truth be told, you don't want them to fade because it is all you got to have of your child. There was a time I wished it away, I wanted to forget but it's impossible. There is a very sad movie called "Rabbit Hole," where the grandmother explains how the grief never goes away. She says it's like a brick you carry around in your pocket. Sometimes you forget it's there but then you reach in, pat it and say "oh yeah, that." No matter what, you always feel the weight of that brick. 

We feel her absence. There are moments where you're looking in the rearview mirror and you want to see three little faces. There should've been three little faces. You catch yourself, unknowingly at first, keeping an eye on the children that were born around her birthday. You quietly look from the outside and watch them grow, all the while imagining what you should've had. You dream up your invisible daughter. We imagine her with blonde hair and blue eyes, like our Calvin. We know Lucy had Brett's chin, his nose and my lips. We know she wasn't meant to live but it doesn't stop your heart from wanting her here, from wanting to love her. 

I don't write this for your sympathy. I don't want your sympathy. You cannot console me and I don't need that. I write this for me and my love for Lucy. I write this for those who've gone through this kind of loss. I write this to acknowledge her, to remember her. 

I find comfort knowing Lucy's in the arms of the angels and my soul accepts that. But my human arms are human, they remain empty and it hurts. We wake up in the morning without that child in our home. We feel the absence and we selfishly want that child with us. I've found that I can write about her, talk about her with select family and friends and it's okay. I love saying or hearing her name. We find ourselves doing small things to remember her, like wearing pink. We wear a lot of pink, because that's the color of the blanket we held her in, for the first and only time. It's a way to quietly remember our invisible child.

We find ourselves missing her, we find ourselves thinking about what she'd be like. She has become our invisible child. Non-existent to most everyone else but she's with us always. Ariauna and Calvin know her story and we talk about her. She is apart of our lives in an invisible way. Surviving her death gave us strength. It showed us the fragility of life and the miracle of birth. 

On January 9th 2004, Lucy was born and died. Almost exactly a year later on January 7th 2005, Ariauna was born but there was a much different ending to that story. It was actually the beginning of a story. I can't think of a better way to spend that first and very difficult anniversary than to be holding a healthy and very much alive baby girl. It wasn't Lucy, it wouldn't replace Lucy but it was Lucy's sister. It was a wonderful feeling to hold Ariauna in my arms, bittersweet but wonderful. 

Because of Lucy's death, we cherish our children. Brett and I know what we lost and we're better parents for it, better people. There's a great sadness, but out of that came a great kind of love.

Connecting through Yoga

Yoga has been a passion of mine for a very long time. It all started in my teenhood with a purchase from Target. I bought a SHAPE magazine which had an article on yoga and a how-to for Salute to the Sun. After that I was hooked on this new thing they were calling yoga. I hadn't known of its existence because it wasn't something one normally did or knew about when growing up in the sticks, during the early nineties. 

I fell in love with it for a couple of reasons. I felt energized, strong, and calm in my body and mind. I didn't feel depleted or exhausted after a workout, I felt the opposite. Bending my body into poses was very cool and fun. I liked that all I needed was myself and some space on the floor. The Yoga mat and pants came later when I could afford them. I needed the books, tapes and practice first, then it was on.

When I became a mom, yoga was lost for awhile but as the kids got a bit older I found time for it again. There was guilt though, that mom guilt where you think you should be doing something else for someone else, anyone else except yourself. However, one day that guilt faded as my daughter showed up in the exercise room wearing a pair of her leggings with a tank top. She smiled at me and asked if she could do yoga too, if I would teach her. I had never thought to even try this, but I was thrilled thinking "hey this is it, I found our girl thing and I don't have to feel guilty, I'm not such a horrible mom." You see my boy Calvin has dominated much of my attention, the asthma is one huge aspect but he's also the baby, a chatterbox and wild. So, when she walked into that room all dressed in her makeshift yoga gear, I felt happy. Now we do yoga together. I can teach her how to be flexible, strong, energized and calm; not just for her body but for her mind as well. Something she can use for the rest of her life. Something I'll do right by her. 

As a parent, you're pretty much always looking at your flaws and wondering how you're damaging your child. I can't remember when I actually felt like a good mom. I often feel crummy about my mom skills because I could always do better. You get one shot with your kids, you don't get to retake the course and there are no manuals for it either. Sure people have ideas and they've written books or articles on how to raise your child but when you break it down, what works for one child may be harmful to the next. Every human being is different in some way or another. 

Our job as parents is to figure out who our child is, what they need from us and teach them in ways they'll actually learn. We have to get to know them, and complicating all this is life. Our day to day lives are filled with chaos. When I finally lay down for the night, my mind replays the day and most of it sucked. The days are consumed with the regular tasks of dishes, laundry, groceries, bills... but then it's also filled with cutting their ever growing fingernails, wiping butts, digging out a booger, bandaging a wound, changing pee sheets, cleaning the food off the floor and cursing as you step on a tiny toy soldier. How much good time do you actually get with your child every day? The answer is very little. There are small moments throughout the day I desperately grab for and try to hold onto them as long as I can. I do let the cleaning go more than I used to, because time doesn't stop and soon it's gone. I always give them an extra hug, several kisses on their soft cheeks, tell them they're my favorite people in the whole world. I tell them I love them so much that I can't even say how much it is, because it's just to much. But I still feel inadequate. 

Then I remind myself of this article a friend of mine shared on her Facebook page that brought clarity and contentment to my ever fretting mom brain. It was in the Huffington Post, called The 'Good Enough' Mother. If you're constantly feeling that inadequacy as a parent, this article will open your eyes and lift that suffocating weight off your chest. This weight I speak of, was especially heaviest for my daughter. Not only does she get put aside for her brother, she is also so much like me that we can clash and argue. Now I can breathe a sigh of relief and count on my time with her, connecting through Yoga. I've done something right, something good for her. Whatever it may be, find that connection with your child, no perfection allowed and good enough is all you have to be. A wise therapist once told me, "love them fiercely and be good enough, not perfect but good enough. 

This photo here, shows I'm doing just that. Look how happy my daughter is. These are the moments parents live for. They are few and far between but as long as there are some, then we're doing alright. We are good enough. 

Five Little Pumpkins Craft

Art projects and/or crafts are fun. Decorating with them is even more fun, especially in the Fall. However, with a budget, it's not always easy so I came up with a five little pumpkins craft that is cheap, simple and fun. If you have children, they'll love this. It doesn't take long so they won't lose interest and what child doesn't love painting? Now, if you're a coffee drinker and you do in fact have children, then you should have all the things you'll need for this craft already in your home. 

YOU WILL NEED

Coffee Filters, Glass of Water, Paint Brush, Watercolor Paint, Green Thread, Scissors and Cotton Balls.

INSTRUCTIONS

1. Take a coffee filter and crumple it up, so it's all wrinkly. Then smooth it out into a big circle. 
2. Use anywhere between one and five cotton balls. If you want a big pumpkin use five, a baby pumpkin use one. Place the cotton ball(s) in the middle of the coffee filter. Pull the sides of the coffee filter up and over the cotton balls, cinch together and twist. 
3. Take your green thread and cut about a foot off. Use one end of the thread to securely tie the top of your pumpkin together. Leave enough coffee filter for the stem of your pumpkin. If you're making baby pumpkins, then you'll need to trim the excess but always leave enough for a nice stem on your pumpkin.
4. Now comes the paint, the fun part. I love using watercolor on coffee filters because it only takes a tiny bit of water and paint to bleed throughout the paper giving it a really cool look. Don't use too much water though, or the cotton balls will get heavy and rip through the filter. 
5. Once painted, hang to dry. With that long piece of green thread you cut, make a knotted loop at the other end, so you can hang them up. I have mine hanging from my chandelier in the dining room. Now you could opt to add goggly eyes or paint/marker on jack-o-lantern faces to your pumpkins. I didn't because I want to keep them up for Thanksgiving as well.

For my children, I have always tried to do a five little pumpkins theme because since they were babies I've sang them the song. My version may be a little different than some out there but it's close enough... 

There were five little pumpkins sitting on a gate. 

The first one said, "Oh my, it's getting late."

The second one said, "There are witches in the air!" 

The third one said, "Ah, we don't care."

The fourth one said, "Let's run, let's run!"

The fifth one said, "It's Halloween fun!"

And OOOOOOOOH went the wind, 

And OUT went the lights, 

And the five little pumpkins rolled right out of sight.

If you're serious about singing this to children, you gotta do it right and not hold anything back. Be sure to get very animated, like holding up five fingers, then one, two and so on... Sound scared when you say "There are witches in the air!" Shrug your shoulders when you say "Ah, we don't care." Pretend scared again and fake run with your arms like Jim Carrey does in Dumb and Dumber. Get excited because it's Halloween Fun! Clap your hands together loudly when you say "OUT" or be close to a light switch and turn the lights off. I think you get the point and you're probably thinking I'm a little lame, but it can be a really fun song. It's something I have loved since I was little and still makes me excited for Halloween. My kids seem to love it too. So, there you have it. Enjoy and have fun!

The Monster Stirs

Another sleepless night. I've had more of these than I care to think about. It begins with one little cough and the monster stirs. 

I hear it. I hear that cough. My stomach turns, my heart stops and fear invades my mind. Calvin has a virus. The coughing fits began while he was trying to fall asleep last night. We started the cool mist humidifier and Vicks Vaporized his chest. Propped him up on pillows and hoped for the best... which at this stage in the game, is quite frankly, stupid. We've dealt with this monster for six years now. Hoping for an easy virus when your child has asthma is like hoping poop won't smell. In those six years, sure we've had some milder colds but none so mild as that of a normal child. 

Ariauna was angry this morning when she found out her brother would be staying home from school because he's sick. She knows what's coming and doesn't like it any more than the rest of us do. There will be no playing at the park after school for a couple of weeks, the fun times will be limited. She knows Calvin will get a lot of attention and herself very little. I get the question again, "why does he get sick all the time?" I explain it again, while trying to comfort her. I hate what this monster does to him, to her, to our family. 

We all know what an illness will do and we feebly hope it will take two weeks instead of three. I hope for four hours of sleep at a time instead of one or two. I hope for no steroids, no barfing, no pneumonia, no hospital. I beat myself up asking, how did this happen, what did we miss, what did we do wrong, what can we do better? How much it disrupts our life makes me angry. I want normal. I want fair. 

Most people are fooled by Calvin's appearance. He can seem so normal, healthy and just fine. But you don't know what goes on behind the scenes to make this happen. You are also unaware of what occurs when he does crash, when the monster is awakened because our family will disappear into our home for weeks on end. A so-called bubble is formed and we're very careful. We fight to get the monster stable. Once that's done, then we spend time giving his body a chance to recover before we throw him back in the cesspool of germs, or he's bound to catch another virus immediately. 

I have turned into someone I don't like. Panic, anger, sadness and frustration set in all too quickly. I have become the hand washing nazi and a germaphobe. If we're out and about, and I see someone with the sniffles, hear them cough or hear that they are ill with something, I feel the rage welling up inside me as I take Calvin and run.

Normal families are rarely bothered by an illness. Their normal child will get a virus, it will run it's course with minor symptoms and will not last for weeks on end. They think nothing of bringing their sniffling child anywhere and why should they. To them, it's a runny nose but to me it's a looming threat of pneumonia. Few can relate, even the closest of family has a hard time grasping the severity of something so small as a runny nose. Not even when I describe to them in detail just how awful an illness with Calvin can be. I don't think it's mentally possible for other people to fully understand until they themselves have a child struggling with asthma. We are all too often alone and isolated with this monster. 

Sometimes it gets the better of me and I foolishly wonder how different our life would be if my child had a set of normal lungs. Simple play dates, birthday parties, school, church, any kind of outing would be what it's supposed to be, normal and/or fun. Instead I look for potential hazards and curse a slip of an unwashed finger in the mouth. I have to keep strict rules, like no sharing drinks or food. Wash, wash and wash your hands. Keep your fingers away from your mucous membranes, the eyes, nose and mouth. Is it fair they should have to care so much about germs, about their mucous membranes?

I used to think that I had to be especially careful during flu season but during a recent visit with Calvin's Specialist it dawned on me there is no such thing. The Specialist was saying how we're not going to try wean him off any meds because flu season is upon us. I told him I don't believe in that anymore. I think it shocked him a little. I said it doesn't matter what time of year it is, if you check the charts Calvin has been sick with serious illnesses Winter, Spring, Summer and Fall. The flu season (October-April) has not applied to my child. I also wanted to blurt out my lack of hope for ever weaning him to a lower dose of meds. Why? We've tried this many times, only to find that we can't. Dosages have only ever been increased. But I refrained from showing just how much faith I have lost in them (them being doctors). 

Asthma is a monster. We've had to adjust our lives around it and live with it. Taking every step we can to manage and control this unstable creature. We sedate it with medication, but every so often, the bad fairies (the germs) sneak in and wake the monster with powers of an ugly kind. So, our battle continues. We keep trying new things and do the best we can, hoping one day this monster will leave. Puberty is now the new age, in which the doctors think Calvin will outgrow this. It used to be age five, but that has passed us by. I long for the day I can think of "normal" as a gift to be cherished.