Sunday, May 8, 2016

The Light in the Darkness

In my World Mythology class, I ended up connecting the Hero Journey to Mother's, and finding acceptance. For our final paper, we got to write our own mythology story, and mine goes something like this... 

The rhythmic hum of the nebulizer was something she’d almost gotten used to as if it were the furnace turning on, except this machine was unwelcome, and an unwanted guest taking up space in the house.  In the dim light of dawn, Anne glanced around the room looking at the debris of respules, inhalers, AeroChambers, antibiotics, steroids, Chinese herbs, antibacterial wipes, sanitizer, kleenex, a stethoscope, an oximeter, Vicks VapoRub, essential oils, and a barf bucket littering the entertainment center and coffee table.  She was so tired of it all and she knew little Joey was too.  Anne’s mind was racing trying to figure out who was to blame for this latest bout of pneumonia.  Was it the neighbor boy and his snotty nose, did Amber bring something home from school, was Bryan not careful at work?  Who didn’t wash their hands good enough, whose fault was it, or maybe it was her fault?  What if it was the coffee or diet coke she’d drank during pregnancy.  Why couldn’t anyone make this better, why did germ after germ give him pneumonia?  It hurt to think and no one had a decent solution.  Anne laid her cheek on Joey’s soft blonde hair and fought back the tears as she rocked her boy, and held the mask on his little face as he tried to sleep.  She’d lost count of the nights spent in the rocking chair, the sick chair.  If only she could scream loud enough for her wish to be heard throughout the universe and have someone fix her son, but the exhaustion fell on her eyelids and she drifted off to sleep.

The next thing Anne knew, she was being awakened by the aroma of coffee as Bryan held a fresh cup out to her.  He kissed her forehead and whispered in her ear, “When I come home tonight, you’re going to a yoga class. I know you’re tired but you need to get out of the house.  I’ve got the kids.”  As she sipped her coffee, she felt a wave of deep gratitude for Bryan.  He was her anchor, her compass; a stable force braving all of life’s turmoils right along side her.  He was right, it had been too long since she’d been to a real yoga class.  It would be nice to get out and have a little breather from the chaos. 

That night as she drove to class, she was held up by a traffic light long enough to watch a family of four walk by.  A little boy close to Joey’s age looked more interested in licking his ice cream cone than in crossing the street.  They all looked so happy.  Grief struck Anne’s heart, she wanted that kind of normal for her family but defective genetics had stolen this from her grasp.  The grief was still with her as she unrolled her yoga mat.  Beth entered the room ready to begin teaching class.  Her face lit up when she saw Anne and she rushed over for an embrace.  When Anne told her why she hadn’t been to class in so long, Beth said, “But this is why you need yoga more than ever. You must find a way to come more often.”  Anne smiled and took a deep breath, it was true, she did always feel better about life after a spell on her mat.  She loved the feeling of digging her toes into the soft rubber and closing her eyes as she flowed through a sun salutation. There were no interruptions in class, just the mat, the breath and the self.  Anne’s favorite part was Savasana, the minutes that followed a workout, where you allowed your body to melt into your mat and your problems almost faded into oblivion.  Only tonight it felt too real, as if her body was literally sinking into the mat.  Anne started to panic, snapped open her eyes and sat up.  She looked around the quiet room, at the other body’s resting in Savasana and immediately felt silly, but she was certain she’d been sinking.  Maybe it was the lack of sleep causing hallucinations, and she was about to miss out on her favorite part from some silly delusion.  She quickly resumed the posture but this time there was no mistaking it.  Her body was sinking through the mat and she could hear the voice of an old man telling her to let go, if she wanted to save her son.  Anne wanted nothing more than to fix Joey’s immune system, she’d been trying so hard for nine years now.  Hours that turned into days, months and years of research for possible cures only to find that nothing was working.  Anne had nothing to lose, she let herself fall through the mat.  
For quite some time she couldn’t see anything but felt her body being pulled through the darkness.  Stars began to appear and she seemed to be approaching a strange blue planet.  Then her feet landed on what looked like a door mat, to what must be a strange little house.  As she raised her hand to knock, a round door opened in front of her and purple eyes stared up at her from a beautiful fairy-like face.  This was no ordinary place and no ordinary kind of fairy, the feet and tail looked too much like that of a dragons.  A soft voice spoke to her and welcomed her in.  Her name was Agatha and she explained that she was gifted in the art of making magical suits that would give everlasting protection from germs.  Anne knew this was the bubble she’d always wanted for Joey, right here at her fingertips.  She couldn’t believe it was this easy.  As she held the suit in her hands and joy flooded her heart, Agatha’s next words shattered it.  The strange fairy dragon proceeded to tell her how the suit must never be removed.  This meant Anne would never again be able to kiss Joey’s soft cheeks, feel his silky hair under her chin or his little arms wrapped around her chest.  He would lose the ability to feel love or the beauty in the world around him.  The longer she stood there holding the suit, she realized she couldn’t keep it.  How could she subject Joey to a life without touch?  Anne closed her eyes and wished for a different answer.

Darkness engulfed her again and she was being pulled along, floating on a dark river of space and time.  Anne’s mind wandered and for a moment she wished the darkness would take her someplace where her life wouldn’t be so hard.  A life where she didn’t have to watch her son struggle to survive.  Thoughts of blame flooded her mind, what business did she have in the first place bringing children into this world?  But a mother cannot stay with these thoughts, from the moment of conception her heart belongs to her child and the gift of that child is the greatest joy she’ll ever feel.  There’s a magical bond between a mother and their child, a force nothing can alter.  Then suddenly, Anne found herself staring up at an enormous tree in what appeared to be an obscure kind of forest.  She stretched out her hand to the feel the bark beneath her fingers and to her surprise the tree spoke.  Alder, was the oldest and wisest tree in the enchanted forest of dreamers, and he possessed magical sap that could heal any disease.  Anne couldn’t believe her luck, this was better than a suit.  She had longed for some kind of medicine to cure Joey and her heart felt light with the possibility of this news.  But just like Agatha, Alder’s magical fix came with a price, Joey’s sense of taste would be lost.  If Anne were to accept the sap, Joey would never again be able to enjoy the sweetness of a donut melting in his mouth, the fizz and bite of his favorite rootbeer, or the creamy delight of chocolatey ice cream.  She knew she couldn’t doom her son to a flavorless life.  Anne thanked Alder, closed her eyes and fell into the darkness.

Once again her body was being pulled along, floating on a dark river of space and time, and she wondered at the possibilities that lay ahead.  This was all too surreal, sad and yet kind of wonderful.  Even though the space suit and ancient tree sap had failed her, she had hope the magical answer lay in the next adventure.  After all the entire universe was trying to help her, she had to find the answer.  Then suddenly, she found herself sitting on the edge of a dock with a mermaid’s tail, staring into the blue eyes of an old man.  Something about him resembled her gramps, but he’d been gone for many years now.  Anthony smiled at her as he said, “Your answers lie within the depths of the sea.” The old man went on to tell her how to find this special sea plant that gives everlasting breath when eaten by a human.  However, it gives life from the lives it takes, so great care must be taken while cutting a bud off it’s stem. You were given a mermaids tail to help you on your journey and with that he wished her luck and vanished.

The next sound heard was that of her tail slapping the water as she dove beneath the surface determined to find this plant.  She needed to save her son.  Deeper and deeper she swam until she saw magenta buds dancing in the water on their long turquoise stem. She’d never seen anything so fascinating, but as she drew nearer there were corpses entangled in it’s undergrowth. Anne quickly recoiled and took shelter in a nearby shipwreck to think.  How was she going to cut the bud off without being snared by the plant?  And then she saw it.  Laying in the broken planks was a fisherman’s net and what looked like a knife.  Anne had a plan.  She covered the plant with the net and pulled the head of a bud through a hole where she could snip it off.  As she swam away feeling victorious, this was quickly squelched by massive orange tentacles wrapping around her body.  Anne cried out in despair, how could this be the end, she had come so close to saving Joey.  There would be no escape from these tentacles, and the more she struggled against them, her skin tore open.  She watched her blood color the water around her.  Anne would welcome death, she was tired of fighting.  As she succumbed to the struggle, the tentacles began to uncoil from her body.  She noticed the squid’s flesh appeared to be glowing and it seemed to be writhing in pain.  It was as if her blood was poisoning the giant squid, and all at once she was freed.    

When she finally reached the dock and held her hand open to show the old man what she’d captured, it became apparent something was terribly wrong.  Anne climbed out of the water, her mermaid’s tail disappeared and she waited for the old man to speak.  His words came as a knife to her chest.  Joey was gone.  Her only son had died while she was on a journey trying to save him.  The old man placed his arms around her, and held her as she wept.  He confided in Anne that he had hoped to help her but every mortal’s life has a predestined time limit that nothing can change.  While he had hoped to assist in her journey to find a cure, he could not prevent or know the timing of Joey’s death.  They talked for hours and Anne regretted how she had spent so much time wishing it were different, so much time protecting him and researching for a cure that she had missed out on his life.  

Anne could feel someone shaking her arm and heard Beth’s voice calling to her, “Anne, Anne, are you okay?”  She opened her eyes and saw Beth’s worried face peering into hers.  Anne could feel the soft rubber of her yoga mat beneath her back, and relief flooded her body as she realized it had all been a dream.  She had fallen asleep during Savasana and Joey was still alive.  Her son was alive.  Everything made sense to her now, and it was as if a huge weight had been lifted from her chest.  The answer to life, isn’t about trying to make it better.  Instead, it’s about being able to accept and thrive in what is.  Accepting all the things that cannot be changed, such as illness and death.  Life is about embracing the unknown and relishing in the joy of what is right now in this present moment.  Everyone’s life is a limited gift.  The only thing you can control is how you choose to live with what you’re given.  Embrace the fear, the chaos, the madness and enjoy whatever good there is. 

When she told Bryan about her dream, or really her nightmare, during yoga class, he laughed and told her, “You’re already his hero because you are his mother.  Your love does more than any magic you could hope to find.”  That night as Anne sat in the rocking chair again holding her boy, she kissed his soft cheek and smiled.  Even though she could not cure Joey, she loved him fiercely and felt incredibly lucky to be his mom.  Namaste.

Friday, May 22, 2015

A Great Balancing Act

I have a love/hate relationship with time. Looking back, it's amazing what time can accomplish. All the little things growing and changing that you don't notice in the moment, but when you reach the far end seems unbelievable. But the ticking of time can also be a cruel mistress. Sometimes we're kept on the precipice of disaster and while the weight of the struggle might occasionally lift, it never completely goes away, nor does it complete its deed and leave me broken. 

Through my Finnish heritage I have what us Finns call, Sisu. This is defined as having spirit, endurance, resilience, tenacity, determination, perseverance, an inner reserve of diligence, the ability to face head-on and always overcome, the recklessness that inspires a person to take on something in the face of incredible odds, bravery, empowerment AND inner strength. So there you have it, no matter the amount of defeat in this life, I will get back up, figure out a new plan and move on. 

Calvin's IgG blood count came back worse than last year which is not what we expected. Although I said we'd be happy no matter what, clearly this was an overstatement. I don't think you can prepare yourself for crappy news even when you try. I'm not saying our year of alternative treatments was a loss because it's not that at all. It's just that I had been secretly hoping the asthma meds were what caused the immunodeficiency and this was stupid wishful thinking. The two are not related. While it's great we have the asthma under control if non-existent, we still haven't figured out why his immune system won't engage. The Immunologists at Children's don't have a clear answer either. What we do know for certain is Calvin's diagnosis is Hypogammaglobulinemia, an IgG immunodeficiency, and further blood testing showed his body is NOT producing the IgG antibodies. It's a production problem. To give you some background, the normal range for a healthy persons IgG is anywhere between 673-1734, Calvin sits at 448, which is 37 points lower than last year. If the number hits lower than 400, it would be considered a dangerous level and become necessary to intervene with IgG replacement therapy. On a side note, we were informed there are rare cases where children have IgG numbers in the 200's and hardly get sick, or those with numbers in the 900's who are always sick. Clearly we don't know everything about the immune system yet. Making all this inconsequential at any time, would be one bad case of a bacterial infection or pneumonia which would warrant immediate intervention with infusions.  

However, even after the news from the blood test we still felt we had some things to try, like Chinese medicine. We decided to see an herbalist and are on our fifth month of Chinese herbs. The herbalist had originally told us he should be feeling better in one to two months, and eventually he could cure him. But Calvin has proved to be a tough case over and over again. These herbs that we've added to what we are already doing have allowed us to take him off the Flonase and Singulair. That's great and all but now it seems we cannot take him off the herbs. His mucus production is out of control. It's been causing nausea and bowel issues too which lead the doctors to order a sweat test to make sure we're not dealing with Cystic Fibrosis as well. Thankfully this test came back negative but the excessive mucus production remains a red flag. It shows his body is constantly trying to fight off invaders. Since it's incapable of producing antibodies, it compensates with trying to flush out the germs using mucus. Being on fight or flight mode and in a continual state of stress, is wearing and can be damaging to his body over time. 

While we have made great strides with managing his asthma and steered clear of pneumonia's for an entire year, when once he had an infection every 6-8 weeks, it still feels like we are only propping him up with holistic measures. We have not been able to wean the chiropractic adjustments, he has to go twice a week or the asthma symptoms come back. Holistic approaches are fine and dandy to a point. Without enough IgG antibodies, the body remains perpetually sick trying to fight off every virus and bacteria. We're coming to the conclusion that we are exhausting our options and while we hope for the best we have to prepare ourselves for the worst. 

As his parents we are stuck in a difficult spot. The two worlds of medicine take opposing views on how to manage and heal Calvin. So many people throwing their opinions around and we're left trying to weed through the mess. No one is holding our hand and guiding us through it, we're left standing on our own gathering information, evaluating and trying to do right by our child. All while juggling the finances within the confines of our budget. Unfortunately, we do not have unlimited resources. We've spent a year and a half attempting to heal him, trying to hold off on infusions. While healing takes time, things like defective genes will merely suck up time and remain broken. Allowing us to only be able to support and embrace what is. There are very few tricks left to us before it becomes clear the infusions are inevitable. It's a defeat I don't want but at the same time we have to give our child what he needs, and in the end if that IS truly what he needs, at least I know without a doubt that we gave it our best shot. We really did try to heal him. 

While some people think there's a chance he could grow out of this and his body could start producing IgG, there are other's who say "it is what it is." The specialty pharmacy that would supply us with our IVIG infusions said it's often a lifelong thing. This would be a hard road for Calvin, for all of us. A giant expensive bandaid and a burden he'd inevitably have to shoulder on his own when he's trying to make his way in the world as a young adult. He'll always have to be careful, work hard to stay healthy and deal with the risk of death that lurks in the background. An emotional stress we've already had to seek therapy for to help him deal with. It's a whole different ballgame when your child is aware of everything, the knowledge of what they're up against can be terrifying and weighs heavy on them. He's a smart kid and can't be fooled. He is so close to normal yet so far away from it too. We've tried really hard to make him better and one of these days I would love for it to be enough. Dealing with a chronic illness has undoubtably worn its holes on our family, yet through these holes we've fought to weave an unbreakable knot around ourselves. The silver lining I guess. 

We recently took our very first family vacation to Florida in March. We had to let go, escape and take a break from our problems. Feeling the warmth of the sun, playing in the waves and being together having fun as a family is absolutely priceless. I cannot even begin to describe how thankful I am for the time we had and all the memories we made. It's been something I've felt cheated of and I was at serious risk of turning into a bitter old hag resentful to anyone I deemed as having a normal life. Every now and then it's really good to pretend you don't have a care in the world. Actually it's a necessity to do this and now that I'm in the thick of the chaos again, it feels easier to take some deep breaths and recall what I am grateful for. At the bottom of it all, when the days end, when the answers aren't clear, when there is doubt, fear and sadness, I can give it to God and be carried by faith. 

Our ultimate goal is to give Calvin the best possible health, protect him and most importantly enable him to have an optimal life. It won't be just one thing that makes this happen. It will be a great balancing act, and we his parents will figure this out because that is what we do for our children. By the way, I am so thankful for my husband, we make a great team and I'm proud of our daughter too. She is cheering right along side of us. Just maybe the next blood test at the end of May will show the number hasn't changed or if we're lucky the Chinese herbs will have worked and we'll see a slight increase. If not, we'll deal and use our Sisu and faith to get us through what's ahead. 

Wednesday, November 26, 2014

Write Something

I like this place. I can say what I want and let it go where it will. I've missed writing. There's been too much to say and yet nothing to put into words these past months. Since my last post I've been blown like a leaf in the wind, leaving little time to collect my thoughts. Tumbling around from one thing to the next, trying to balance, hold my head up and muttering a Meet the Robinsons quote, "keep moving forward." I've felt quite a bit of fear, a breaking heart and then moments of being blissfully happy, because it's after our darkest days when we can truly feel the light.

As Thanksgiving approaches I could give a crap about the turkey or the feast. Quite frankly I'm not particularly fond of this time of year because of the illness and all the people who carelessly spread it, the chaos, needless hustle and bustle... but the real meaning for this holiday matters to me. Looking at the year in slow motion, I feel grateful for so much. 

You see, life changes quickly in the ordinary instance. Snap your fingers and everything can change. It takes your breath away every time. In April, my strong Dad had a massive heart attack at age 65. He could've been a goner but luckily there was minimal damage and the doctors saved his life with five stents. In June, my sweet Mom was diagnosed with Lung Cancer at age 63, never having smoked a cigarette in her life. A section of her lung was removed and it was thought to be a best case scenario but it's not. There is still cancer growing somewhere in her body although we don't know where. My world was shaken because for some dumb reason as children, we think our parents are invincible. No one is, obviously. I love these two people dearly and selfishly wish they could live forever. 

So there's been that, it's pretty big and ugly but we float on. We have to. Find the silver lining. My parents are not six feet under, so we'll make the most of every moment we can. It would be great if I weren't eight hours away but I am thankful I can pick up the phone and hear their beautiful voices, although sometimes it makes me cry. When I finally get chances to wrap my arms around them, I hold them longer, soak it in and go back for seconds sometimes thirds. It probably gets awkward for them, lol. 

It's often hard in this life, but that can make you a better person if you let it. It can make you appreciate what you have, when you have it... and that my friends is a gift. After all the years of struggling with Calvin's health, we feel real happiness when we finally have moments of normalcy. When we get to venture out and do normal family things together, we are very grateful. There have even been moments of complete bliss when it hits us how much Calvin's improved. We've been climbing the mountain and it's been tremendous work, but worth it! 

For about eight months he has seen a chiropractor three times a week. The last two months we've been able to go down to two times a week. He used to be on quite the asthma inhaler regimen:

2 puffs Advair twice a day
4 puffs Flovent twice a day

Do the math and it was 12 puffs of inhaled steroids daily. Madness. Since February, we have slowly weaned him completely off and as of October he hasn't used an inhaler, maintenance or emergency. This is the first successful time we've been able to fully wean him off since he was a sixth month old baby!!!! After eight years of expensive meds, four exclamation points isn't nearly enough. Right now, he's only on two prescription drugs, Singulair and Flonase. We hope to discard these someday too but we won't make an attempt until Flu season ends next Spring. We don't want to push our luck. 

Yes he has gotten sick frequently, but not too much more than the average kid and he comes out of it after a chiropractic adjustment. We've been watching him go up and down for months now. He'll start to get ill, get adjusted, show improvement and we move on. There has been no pneumonia, no emergency meds and no prednisone. It hasn't gotten critical. The chiropractor snaps Calvin's body into place (removing the subluxations, look it up) and his sinuses are able to drain, his body is able to expel and recover on it's own like it's supposed to. The goal is that Calvin's body will heal itself if we can support it in a non-invasive healthy manner. 

We've made other changes as well. He eats a raw, whole, organic diet as much as possible with limited sugar and processed foods. The only cow-made diary products allowed are cheeses, otherwise it's all about the almond milk. I make him Superfood smoothies packed with greens, honey, hemp, chia seeds, goji powder, maca powder and so on. Essential oils are amazing, we apply them mainly to his feet, some are ingested and there will be another blog post coming that will be devoted to just the magic of these essential oils. Then we've been doing an abundance of supplements such as fish oil, high doses of vitamin C, probiotic, vitamin D, multi-vitamin, manuka honey, turmeric powder, cayenne pepper, apple cider vinegar and fresh ginger to name a few. I owe everyone detailed blog posts on how to incorporate these changes into your life. I'll get there. I wish there would have been a me that I could have read about way back when.

In short, what we've been doing with Calvin's health has to be working. We'll know for certain soon enough. The IgG blood counts have been ordered and will be redone shortly. Then we'll know for sure if we're truly healing him. It is a possibility that we've only succeeded in propping him up on holistic methods but for daily care it's been way better than the western medicine route we have abandoned. The test will tell us if we still have to consider adding IgG replacement therapy to the mix because what if he came into contact with the measles? Would he be able to survive it? It can be a scary thought. As his mom, I have to make sure I'm protecting him. Western Medicine is an old hat and while I find more use out of watching it collect dust than actually wearing it, I can't just get rid of it entirely. On occasion it's needed, it has its place. 

I still love Calvin's Allergist/Pulmonologist, Dr. Paul Detjen. He's a good man and when we checked in with him after six months into our alternative treatments, he was amazed at Calvin's improvement. He didn't merely brush it off as luck or outgrowing something. He told us, "whatever you're doing is clearly working, so keep doing it." This doctor has stuck with us, seen us through some awful spells with Calvin and he gave us the best he knew. I will forever be grateful for him and if we should hit a pothole, and Calvin's lungs implode, you can bet he will be there to fix it. Sick care and emergency care cannot always be avoided. But you can bet your butt, I'm going to steer us away from them as best I can. I am going to enjoy watching the rubbermaid bin packed with his emergency meds, sit there on the shelf untouched.

As I wake up and realize where we are today compared to years past, it seems too good to be true but I'm going to shut up and enjoy it. Even though we have that test coming up, I have hope. Even if we end up needing some medical intervention, it will only supplement what we have going on now. Do some research and educate yourself. There's more out there than an M.D.'s office and their prescription pad. It will take more work and effort on your part, you'll need to be brave and ask questions but I assure you, it will be worth it. We're in a really great place. Two amazing people are to thank for this and I would love to publicly acknowledge them. Calvin was stuck in a state of perpetual sick care and Dr. Derek Kasten jump started his recovery back to a state of health. He supported and coached us through the rocky transition of walking away from what we knew and empowered us to establish a better way that would heal our child. He has now moved on to North Carolina, One Love Chiropractic, and we miss him greatly. If you live there, look him up, he's amazing. Our current chiropractic hero is Dr. Andrea Mursu, Health in Harmony Chiropractic. We love her! You can look her up too but don't fill up her schedule because we need her. 

Today and always I will forever be grateful for these amazing chiropractors, they helped us get our life back. Prior to them, I feel like we were merely surviving. You don't have to just survive, there's living to be done. Happy Thanksgiving to all, may you find gratitude in this life and celebrate those you get to love. 

Friday, February 14, 2014

Poetry for my Little Sweethearts on Valentine's Day

I love Valentine's Day, it's my favorite holiday. The romantic kissy stuff is one reason but mostly, it's because it is full of pink and a special day to tell those you care about just how much you love them. This year, for the little sweethearts in my life, I decided to write each of them a poem. 

For my daughter I wrote:


We love your gorgeous smile, the sound of your giggles and your pretty brown eyes, 
somedays you’re going to feel ugly but you’ll always be beautiful, even your thighs.

Sometimes there is no time for play, so much to do, and no way out of it, 
but we’re here to hug you when you feel like it’s too hard and nothing will fit. 

You’re smart, every bone in your body is creative, and you must have the sweetest heart, 
On occasion you mess up, be confident you are still great and fix it, don’t be a fart.

You have a very special place in our family no one else can fill, only you, 
remember you’re loved a whole lot, no matter what, so don’t ever be blue.

Happy Valentine’s Day wishes and kisses to our girlie girl,
The world is your oyster, don’t you forget you’re the pearl. 

For my son I wrote:


We love your funny stories and the dimples on your cheeks,
we know you struggle to be healthy and some days you feel weak. 

But you’re making good choices and healing every day,
and we are here to help you each step of the way.

When the brains in your head think the anxiety can rule, 
just remember you’re coping skills are the right tool. 

If the HULK in you wants to destroy the world and you get real loud,
we still love you with all our hearts and you make us very proud.

Don’t forget all there is to LOVE in your life when you get blue,
Happy Valentine’s Day sweetheart and many kisses to you! 

They read these poems out loud tonight and I think they liked them. I know they mean something to them now but someday it'll mean much more. I love my children. Our lives get chaotic and crazy, especially now with all of Calvin's treatments, but I won't let it steal the magic. I am not a poet but I had to try. They are each struggling in different ways as we all are. Life gets hard, but today is a special day and with LOVE anything is possible. So, Happy Valentine's Day wishes to everyone, I hope you all felt loved today in some small way. 

Monday, January 20, 2014

Moving Mountains

The book "Oh the Places You'll Go!" by the one and only Dr. Seuss, has applied to my life in so many ways. Right now, it is cheering me on saying, "KID, YOU'LL MOVE MOUNTAINS!" And that is just what I need to do. I need to move an impossible mountain or two. 

The end of 2013 came to a screeching halt with one phone call from Calvin's Immunologist. Some of the test results were back and they'd found a problem. Another diagnosis, our son has an IgG Immunodeficiency severe enough that he'll need monthly transfusions or weekly injections of IgG replacement therapy. As I heard these words falling out of the doctors mouth, I could hear myself trying to slow my breathing. Trying not to cry, trying to make the news not so bad. There was a lot of silence on my side of the phone as I listened to him explain that basically Calvin is not able to make enough antibodies to protect himself and fight off germs. Furthermore, he cannot make antibodies for some vaccines like the flu and although he showed ability to respond to some of his childhood immunizations he was not able to keep them. Therefore he is a child with very little, to no protection against germs. And complicating all this is his asthma, because the medications used to treat asthma actually worsen the immunodeficiency, so good luck with all that. Merry Christmas and oh yeah, make that a Happy New Year too.

I hung up the phone and cried. When I finally choked out the message to my husband he had a completely different reaction. His logical self kicked in and he knew that even though we had an answer and a suggested treatment plan, it really didn't change anything. He said, "Nicki you can't freak out and put Calvin in a bubble, and we don't have to rush into anything. We have been taking care of our son for seven years without knowing, so this changes everything and nothing." Brett was right, he usually is. 

So, although the year 2014 is full of uncertainty for us, there is hope. I need hope. We have come to a fork in the road– to our left is monthly transfusions or weekly injections of IgG replacement therapy, and a regimen of prescription drugs, to our right is an aggressive chiropractic care plan with unconventional and alternative therapy's. Given these two choices, we decided to explore the right before we head left. We've been as far to the left as we dare go for the moment and going back will be our last resort.

Transfusions come with their own set of problems. Calvin's body could reject them and there's a host of side effects. It doesn't fix anything permanently, it puts a giant and expensive bandaid on the problem, week after week, month after month. His body could become dependent on the replacement therapy and stop making its own antibodies. So before we turn to transfusions for help, I have to know we tried everything else first. We have to know it's our last resort with 100% certainty. To many, we may seem foolish for not jumping onboard with the transfusions right away but we've lived with Calvin for seven years and nursed him back to health over and over again. If his lab results are reading levels severe enough to warrant transfusions; yet we've managed to keep him out of the hospital unlike so many other children with his diagnosis, than we're doing something right with him. 

We do a lot of preventative care, vitamins, herbal treatments, chiropractic care and our germ protection is second to none. It's a comfort to know I've been doing something right this whole time because when you have a super sick kid, you think the opposite. You beat yourself up as their mother because if they're so sick all the time, you must be doing something wrong. It's a relief to have an answer and that the answer doesn't mean I'm inadequate, it means he's broken by genetics and quite frankly by today's sick care too– a pill or transfusion to fix everything. 

We might still need to utilize pills, inhalers and transfusions in the future but I have to believe there is more than that to make Calvin healthier, to make it possible for him to live a BETTER life. I sit back and recall the countless doctor appointments where they prescribe pills and inhalers and it makes me think, "Is this the BEST they can do? Is this really all they know to do?" When I'm waiting for the dentist to fix Calvin's tooth decay, when I run my hand along his hairy little back, or when I realize he needs new clothes but he hasn't grown, I think "What are these medications doing to him?"

So many questions, so many emotions. It's funny how all those years, people kept telling me the germ exposure was good. How he'll get all these illnesses over with early and have a stronger immune system for it. They were so wrong, but who can blame them. Who would think there was a genetic defect causing all the problems. That Calvin would never be able to benefit from being sick or getting vaccinations, unless he is supported by someone else's IgG in the form of transfusions. 

I deal with so much anger. Why can't Calvin be healthy? Why are we robbed of a normal, happy, healthy childhood for him. It boils my blood to see the way I'm looked at sometimes too. I know I've looked like a fool to people often, been made out to be an overprotective mother coddling a sheltered child. If only that were true, and I could just ease up and he'd be fine. Unfortunately, I was right all along. I had the right to freak out about the stomach flu going around because for someone like my boy, that stomach germ can last for eleven days. You try eleven days of fighting the stomach flu with your child and see if it doesn't almost kill you both.

I try not to let it bother me because I know that people who have this opinion of me don't know any better. They've not gone through this mess and are not aware of their own germ control inadequacies because it doesn't negatively affect the quality of their life like it does ours. Sometimes it's hard to not let the words get to me, like the one time I was describing Calvin's affliction and someone's response was to say, "survival of the fittest." I couldn't even respond to them. What is that supposed to mean? Is my son unfit to live so he should die rather than pollute the gene pool with his curse? But this also brought me to another conclusion. Sometimes people say stupid things because they're being stupid. Luckily, for every idiot out there, there's a loving and caring person who wants to help out or support us. 

In the end, we make our decisions like any self respecting parent. We try to do what's best for our child and not care what people might think. Sometimes desperate times call for desperate measures. So going forward, we're going to try a much more well rounded approach. We will still consult with several professionals, his asthma specialist, the immunologist and our current chiropractor, but now we're adding a well known certified pediatric chiropractor Dr. Anthony Ebel. We will rely on our traditional doctors for emergency care and to rule out such pulmonary diseases like PCD and Cystic Fibrosis, both of which seem less and less likely each day, but for Calvin's daily health we will rely on specialized chiropractic care. There is clearly something not working in his immune system, something the drugs have only sabotaged or propped up, and for once we're going to go after the source of the problem as opposed to just managing the symptoms. 

We're not jumping into transfusions or injections without being certain that's the only option. We've been doing this for seven years without a diagnosis and without transfusions. I've witnessed how changes in Calvin's diet and sleep, getting him chiropractic treatments and giving him herbal oils, have improved his health. I can't ignore that. I can't pretend Western medicine is the end all be all, because it's not. It's amazing in an emergency. It can save your life– but from what I can tell, they can't keep you healthy for any period of time. 

As we continue to research and listen to all the possibilities, we'll make a choice, and keep making choices as things unfold. I just need Calvin to live through it all. We will do whatever we can to give him the best health possible. There's a chance we could fix everything, or not but we need to try and take the chance. Any improvement we can make, will be a great success in my mind. There is hope. If I'm living in a Dr. Seuss book, I'll leave you with, "Today is our day! Our mountain is waiting. So... we'd best be on our way!"

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.