Wednesday, November 27, 2013

Feeling Gratitude for Past and Present

We decided to have a quiet Thanksgiving this year and because of that I've had some time to actually think. As a mom, this chance is rare. You don't get many of these opportunities because you're pretty much bouncing between things to be done or places to be, that when you finally slow down for the day, you fall asleep. You don't think, you just DO, until you can't possibly DO anymore. 

Now that I'm not packing for a holiday road trip or the reverse of needing to get things done before company arrives, I'm thinking. Sometimes this can be a bad thing, like when your mind is in a bad place, but for once in a very long time (and I'm actually scared to admit it) things are actually okay. Maybe even good.

Calvin has been in a really good place with his asthma and immune system (again so scared to type that and jinx us but is there really such a thing as jinxing?). It is what it is. You get what you get. You only have so much control and then it's luck. I need to grasp that we're going to have bad spells and I'll deal with them, I always have. But I should enjoy when we're in a good place without waiting for the bomb to drop, right? "Be present Nicki, be present."

To what do we owe this reprieve? It certainly isn't antibiotics or inhaled steroids. We've been trying something different. We have been working hard to get Calvin's body healthy enough to possibly fix itself. There's a theory that if you give the body what it needs to stabilize the chemical, emotional and physical state, it will heal itself. To help us do this, we started seeing an amazing Chiropractor (who hails from Wadena, Minnesota - Holla!) and we started giving Calvin strong doTERRA essential oils regularly. 

We hadn't thought this was possible in the past for two reasons. For one, the doctors told us it wouldn't help, we shouldn't bother with Hocus-Pocus. They had no faith in it. Secondly, we simply couldn't afford to give it a try. When you're spending so much money on chest x-rays, medications, tests and doctor copays; there isn't room in the budget for expensive oils and a trial run at Chiropractic treatments. All of which may or may not work.

The opportunity to take a chance came when I was offered a job caring for this awesome little baby every day while my kids are at school. It is so sweet to get my baby snuggles and giggles in, and it's great to have some extra income too. This allowed us to try the natural route while hedging our bets with the traditional treatment. I believe you have to find a balance between the two worlds when treating a disease.

I'm still nervous to say that it's working but I really think it is. It's been two months of weekly Chiropractic treatments as well as daily oils and Calvin has made it through two respiratory colds without needing massive doses of his rescue meds or developing pneumonia. I think that's huge, I know that's huge. So, yes that has to say something. 

His ailment hasn't only had external influence though. His close and frequent brushes with life threatening illness has made him weary. Sure, he tends to be more careful around germs, and what parent doesn't want that? But it's also caused unhealthy fears, the likes of which we've had to seek professional help for him to be able to process them correctly. He was fearing his own death which is still hard to talk about. It's one thing for me to be afraid for him when his lungs are failing to extract enough oxygen from his breath, but much harder when your child is aware and feels it. Luckily we found a great therapist to help him and give him some coping skills. Over the past few months he's worked hard and as of this week, he has graduated. 

As I sit here I feel a sense of relief I haven't felt in seven years. That's seven long years of dreading every childhood illness, many of which became prolonged and severe. Seven years of collective impact on our family's lives in a negative way. We've had to live a completely different life from your average family with healthy children. Yes we've learned to adapt to each new situation/predicament we find ourselves in, (and there have been many) but it hasn't been easy. 

Thinking back to this time seven years ago, three month old little Calvin had his first bout with pneumonia. Back then we lived in a garden unit ONE bedroom apartment in the city. East Rogers Park on the far north side was not the greatest neighborhood, and our apartment was far from deluxe. But with a mortgage payment on an empty house in Minnesota on top of rent, it was the best we could afford at that time, and for quite a while after.

Ariauna was almost two years old so we set her things up in the one bedroom. The other room which was meant to be the living-room / dining-room / kitchen also served as our bedroom. It consisted of an inexpensive airbed mattress and old rocker-recliner. Inevitably the airbed mattress sprung a leak and left us sleeping on the hard floor for two weeks, until my in-laws caught wind of it and kindly bought us a new one. Calvin slept in a Pack 'N Play next to our bed. We ate at a small folding table with folding chairs. The heat was free but the radiators were mounted on the ceiling, obviously the plumber was never taught that heat rises. No dishwasher, no in-unit laundry and no parking anywhere near the building by the time I normally got home from work. Eventually we were able to rent a parking spot behind a Laundromat 2 blocks away for $150/month. That way I wouldn't be stuck driving around the neighborhood looking for a spot to park and then carrying two babies who knows how far to get to our apartment for the night. 

I lamented the fact that I had to send my kids to daycare after only six short weeks with them. I was robbed of their baby years. I'd drop them off with a Mrs. Jackson in Maywood in what turned out to be a pretty rough neighborhood, but I had no idea. It was reasonably close to my work and she was in my price range. She was good enough but she wasn't me. She wasn't their mom. It wasn't what I had imagined for raising my children. Calvin kept getting sick, sicker than a normal child would in a daycare setting. One day Mrs. Jackson called and Calvin was panting to get enough air. We thought he'd get better at home but he didn't. Then his lips started turning blue and Brett had to rush him off to the ER because we couldn't risk the time it would take if I was to try and find the hospital in this new city (getting lost happens a lot to me) and there was no time to spare. I completely trusted my husband but I was the mother of that really sick child and I couldn't be there with him. I sat in the apartment instead, waiting with Ariauna and trying to be her mother. Trying not to rob her from a normal childhood and my panicked thoughts were with my sick baby boy. 

Ever since Calvin's first emergency room visit, it was one hard sickness after the next. There were more agonizing times stuck in traffic with a baby who was struggling to breathe. The moments we spent rushing Calvin to the ER are the longest most terrifying moments of my life. The fear and heartache I felt during his lengthy hospital stay when he was six months old is still with me to this day. I hardly slept because I had to keep him from taking the oxygen tubes out. All those hard times we had to hold him down while he screamed, just to give him meds and nebulizer treatments. So much time, energy and money was spent on keeping his airways open, constantly trying to make him better. We struggled in every aspect of our life and we were alone. There was no family and none of our friends around to help. And forget about meeting new friends, there was no time for it. 

My regular days started at 5am. We'd get everyone ready and out the door by 6:30am because I had an hour and a half commute each way to Hillside. It was the only job I could find doing what I had done in Minnesota. I drove a two door Chevy Cavalier, with two little people in my backseat. It was small but afforded me the ability to feed Calvin a bottle while I stagnated in the famous Chicago traffic. Maybe it wasn't as dangerous as some people who drive with one hand on the wheel and one on the bottle, but I still didn't feel great about it. I had to work. I had a long commute. It was the best we could do at that moment, but it still burned me to know what we left behind in Minnesota. The secure job, the easy commute, the great daycare lady and all our friends and family. 

That's not even close to being all of it. Some of it I can't believe I actually lived through without losing my mind. The roaches, the mice, the Christmas Eve sewer backup in our bathtub - we lived through quite the rough patches, but at least I LIVED THEM with my best friend and whom I consider the best husband, and the best Dad. I had what was most important and our difficult experiences have made us the people we are today. They have lead me to the place I am right now. As I take the time to think about all that was and all that is, I am so thankful. 

I feel so much gratitude for what IS now. We took the chance all those years ago, to move to Chicago and we hoped. Brett had a great job opportunity that would provide for our family. Minnesota couldn't offer us that. His job might have been the only great thing in our lives right then, but it's carried us to a better place today. That hard choice was right. We've made new friends and I'm so grateful for them. There are still struggles and unknowns with Calvin's health, with life in general. But I can make peace with that today. I can let it be, let it rest and I can enjoy the gifts in this moment.  

When the day is done, I steal into my children's bedrooms and kiss their softest of cheeks and quietly whisper in their little ears, "I love you." As I shut off my bedside lamp and snuggle up next to my husband, I know I am lucky. I love my little family. I am sleeping in a real bed, in a nice home, in a quiet and safe neighborhood. Nothing is ever perfect but it can be better than what it was. I want to take a moment to notice. 

I have so much to be thankful for. No one knows what struggle the night or the next morning might bear, but I am going to choose to be content and be happy when it's mine TO BE. 

Happy Thanksgiving everyone! 

Although it was an old rocking chair in a 
not-so-nice-apartment, and I never had enough 
time with them... I had this moment that I will 
cherish forever and I am thankful. 

Friday, May 24, 2013

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.

Wednesday, March 20, 2013

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. 

Saturday, February 23, 2013

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.

Wednesday, January 9, 2013

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.