I got 99 problems...

I don't typically make resolutions. I find them to be over-inflated wishes verses pathways to actionable change. Today many will make and fail to keep resolutions to become a "better you" by way of some tangible benchmark. More than ever I'm feeling immense and constant pressure today and all year long by the barrage of posts on my Facebook feed and in my Facebook direct messages by friends offering their own brand of 'new you' solutions... I've gotten dozens of these kind of direct messages in 2019.

Want to find the new you in the new year? That's cool, but I do like the 'old' you... that's why we're friends. I like you for you and you like me for me. That's what good friendships are made of. But if you're on the search for a new you, I think that's awesome too and I'm here to support you on your journey.... I also have a lot of friends who can help you with that! 

In 2019, I've received direct messages from friends letting me know that they alone have the holy grail of solutions to nearly all my imperfections! I have received at least SIX different pitches with solutions to help me lose all the extra weight I’ve been carrying. I have been offered solutions for my bad skin problems, solutions for my ugly brittle hair problems, solutions for my toxic cleaning product problems, solutions for my dirty home air problems, solutions for my macro nutrient deficiency problems, solutions for my normal length eye lash problems, solutions for my boring polished nail problems, solutions for my children's health problems, solutions for my dragging energy levels, solutions for my underwear and shapeware to tuck in said fat problems, solutions for my accessory problems, and solutions for my [fill in the blank] problems.

I never realized I had SO many problems until this year! My problems seem to have EXPLODED! I never realized how terrible of a lifestyle I've been living! I never realized that I was so overweight and unhealthy that somebody would decide to put together a complete custom intervention program just for me! I never realized that my skin was so bad and my eyelashes so stunted that a friend would be sure to tell me that they could fix my dark spots and get me connected with the products to make sure my eye lashes WOW my husband…. In 2019, I found out that I likely look like an overweight troll and I pretty much suck at life, but alas my “friends” have solutions for all of that!

....and you know what’s really weird.... nobody has ever messaged my husband or any other man I know to offer solutions to their problems! They must not have these problems! They must be the perfect species! It seems it’s only women who have ALL of these problems! Our gender seems to be a terribly broken half of the human race! It’s amazing that we are even considered equal to men with all of the problems we have!!

So, by this point I hope you’ve read the sarcasm in most of this. I'm sincerely happy for those who have found the solutions to their problems or those who wish to try any of these multi-level marketing products. I wish you continued success.  But, I think it’s time we take a look at the bigger picture of the culture that’s being created on the Facebook feed of millions of women. Newsfeeds littered with multi-level marketing schemes thriving on breaking down other women’s confidence and sense of self-worth and bankrolling off of a manufactured sense of self-doubt and self-loathing. I’m going to be honest with you, it’s not for me. I’ve been there and done that with many of these products and I’m done. I wish you’d stop telling women what’s wrong with them, what problems they have, or how they can become a better version of themselves. I find it fascinating that many of the same women that scream about gender equality, would freak out about women being objectified in the mass media and tout the importance of women run ‘businesses’ are the same women preying on women’s emotions and low self-confidence for profits. At this pace, it'll be a wonder if our daughters grow up with even a sliver of self-confidence.

So, if you’re a woman like me who’s exhausted by the never-ending stream of MLM product pitches, don't forget- you're great now and the old you is pretty great too. Working on yourself is great, taking time to just be okay with things is great, some days just surviving is a miracle. Don't be afraid to celebrate who you are today!

A week without you...

Time seems to be traveling at the speed of sound- you can't see it move and you would almost swear it's stood still, until the deafening silence of the quiet moments forces us to remember all that has happened in just one week.... and over and over again we relive the pain of how real it is. The final moments, the heartbreak of goodbye and all the reminders that are part of our daily lives. None of us have been spared by the pain, but it has been salved by the outpouring of love from those who loved you and love us- so many of them heartbroken with loss, too.

It's impossible to share what you meant to everyone, because you were just what we all needed. You were somebody to everybody who knew you. You were a husband, a father, a brother, an uncle, a papa, a friend and so much more. You were a fixer- whether you needed help with equipment, needed a set of helping hands, help with a broken toy or help with a broken heart. No project was too big- if you couldn't find the fix you would create it.

You were brilliant. You were the embodiment of "necessity is the mother of invention." There wasn't a problem too big or too small that couldn't be fixed with a little out of the box thinking and hands on education. I laugh to myself when I think of all the things you helped us fix- everything from our television, to tires, to tractors, computers, lawn-mowers, furnaces and more. There isn't anything you wouldn't make work again.

As we work to heal our hearts and slow the stream of tears, I know you would never tell me to buck-up, get over it or not be sad about my hurting heart. In your life you knew real pain and knew the holes such painful loss leaves. Such loss can't be erased, but it can be eased. You wouldn't tell us to move on when we were sad, you would help us work through it and you would tell us a story.

My life is full of adventures with Al Fox...You were there to pull me and the plow truck out of the ditch when I got it stuck last winter. You were there to put a pair of vice-grips under the old diesel shifting cable so I could get home as long as I didn't take it out of gear (and trusted me not to back over you in the process!). You were there to jail-break me from the hospital only 22 hours after c-section and swore to the staff to be my nurse- you gently loaded me in your 3/4 ton pickup, grimaced at every bump with me on the trip, made sure I took my medication and dutifully wheeled me around in a wheelchair so I could be with my baby. You were there to to take grandbabies for tractor and combine rides every planting and harvest season. You were there to captain Canada trips- you knew every bay and every rock better than any map. You were there to take a kid in your boat and sometimes even stayed back to take a break with the kids so Shelby and I could have a quiet boat for a few hours.

I still see you hang your head just a bit and grin from ear-to-ear while shaking your head at the snafoo's I would get myself into for doing the things most 'girls' wouldn't try... but you never cursed me for my ambition- you just smiled, chuckled and helped trouble-shoot the situation. You were there to bring me hunting and learn the Fox farm. I'll never forget the laugh and look on your face as we ran up the hill together after the little buck on the run and as I dropped it while it was jumping corn stalks. You were there for our kids and loved them like your own- learning how to care for them, deciphered medication schedules, feeding pumps and when we were sent home with literal manuals to keep them healthy. You were there to lend a hand and encourage Shelby and I as we chased our dreams of building a home on the farm. You would call to check on me if I wasn't feeling well to see if I needed help with the kids. You helped because that's how you loved and your love was a never ending stream of service. You were there for every appointment, every event and whenever I needed a hand. More often than not, you were my first call. You were there. ...and I counted myself lucky when you needed me there for you... a ride from the field, to grab parts in town, to bring you to an appointment or to turn a key while you worked on getting machinery to start.. and in the end to help hold your hand as you made your way to heaven.

My heart is full of adventures with Al Fox and even in death, I know our adventures aren't done. Every planting and harvest season we'll see the fruits of the knowledge you shared. Every time the kids talk about their memories of Papa. Every cast in Canada with a giant red and white Daredevil. Every famous KC special at Rutabaga and every time I look out my windows I'll know my next adventure with Al is out there...

Risky Business

In June Owen survived a potentially life-threatening medical event. Due to his rare complex medical needs his body was unable to fight off a common stomach bug and he nearly died. We are incredibly fortunate that since that day, Owen hasn't missed a beat. He is back to his silly self and looking forward to 3rd grade. His resilience is remarkable.

As parents, we re-analyze every detail of those critical moments to try and mitigate future crisis… we troubleshoot the situation and try to add mental flags in attempt to make future events less critical, save us all from the pain, stress and handfuls of grey hair. Because we choose let Owen live outside of a bubble- there will always be factors out of our control that could affect his life... but, to some extent- isn't that a risk we all take as parents as we raise our children in the world? 

A few weeks ago we got a letter from our primary insurance company letting us know a 'partner in care' would be contacting us soon to help us manage Owen's healthcare needs. My guard and blood pressure instantly shot up. While I don’t like to think of myself as a tin-foil hat conspiracy theorist, I am a skeptic when it comes to the sudden interest shown by our insurance company in my sons’ medical needs and considering the timing of this letter it might have something to do with the abundance of claims submitted as a result of his crisis in June. The letter promises a new nurse ‘partner’ in our healthcare team to help us make more informed healthcare decisions for him…. I have no doubt that the nurse is a good person, but I’m not sure if a person employed by a company with a business model relying on profit from subscribers should be involved in critical medical decisions. Conflict of interest much? The letter is nothing but a thinly veiled introduction to the risk management team, because the money monster insurance company is losing money on Owen’s care. Insurance companies are about making profit and I’m pretty sure the claims submitted following this last crisis have wiped out any hope of profit they will ever make off of our premium payments. The insurance company has moved to ‘loss mitigation’ mode.  

All right, everyone…. Grab your partner- join hands. A new song and dance is about to begin. This morning the coordinator finally called to set up the next call with our new ‘partner.’ I did my best to calmly and clearly articulate my skepticism of this new ‘partner’ our son has been assigned. The woman was kind and it was obvious she was not prepared for my questions and didn’t understand my lack of enthusiasm about our new ‘resource’ we were being given. I explained my concern about sharing privileged medical information with a ‘nurse’ employed by our insurance company…. She said that in certain cases they seek diagnostic information and already have a file regarding Owen’s diagnosis, so privileged information really shouldn’t be a concern. Whoa.. In all other medical information sharing experiences I've had to sign specific waivers for doctors/specialists/agencies to communicate about specific medical records. I don’t recall ever giving this kind of consent, but I suppose it is buried somewhere in the policy.  I calmly continued to dive into questions about the ‘partner’ and how need was established.  She told me that often members call and ask for help navigating chronic medical problems and the nurse could help provide guidance and support.  I told her this is not a program we inquired about and I found it puzzling that we have two children with complex medical needs and our first referral to the ‘resource’ only happened weeks after a medical crisis- that medical payouts seemed to be the deciding factor that lead to our involuntary case assignment. She said while most cases are a result of members calling in with questions about complex medical needs coverage, some cases are referred as a result of risk analysis team recommendation. Well, we haven’t called requesting services…. So. Money. A profit and loss team looked at our case and found out what we already know… caring for our child is expensive.

It is beyond frustrating. It’s why I continue to write about our experiences in dealing with insurance companies and the hurdles we face managing the healthcare needs of our family while providing a life for our children.  The value of your life is not measured by character, love, or the invaluable price of your existence- your value is in dollars and there is a price on your head, because healthcare in our country is for profit and a for the privileged. It’s why I will continue to support a universal healthcare system that puts providers and patients in the driver seats when making healthcare decisions and take the money mongering insurance companies interests out of the equation. This new ‘partner’ in healthcare that has been offered to our family by our insurance company is nothing but lifeless risk management maneuver with no personal connection or genuine interest in the well-being of our family. Its only purpose is the well-being of their payout portfolio. It’s disgusting. Once again, in the current healthcare system structure, our family has been reminded that Owen’s value as a human has exceeded the dollar value that has been placed on his head. It's sick.

Fight, Flight... and Life.

We came home to the alcohol wipe wrapper still on the counter where I threw it 36 hours before and after I carefully drew just the right amount of medicine, bled the needle of air, and swabbed Owen's thigh, pinched his skin and plunged his rescue medicine into his limp body. That wrapper laying on the counter was a nauseating reminder of how close we were to the darkest place. That little white foil wrapper lay on the counter like a surrender flag. It's our final option. Inject-able steroids are the only substance on Earth that can bring him back to us when oral medications fail to stay down. It's all the fight we have to give when he has none left.

Ashton woke us up at 4:30am to tell us Owen was sick, he heard him gagging. We were skeptical that big brother was just telling us a tall tale. There were no signs Owen was sick the night before. We had a great dinner for Father’s Day- Owen ate his own dinner and part of mine, the kids were being silly and playing until almost 9pm. Nothing seemed off.  We heeded Ashton’s warning and went to check on Owen -and it was clear he wasn’t feeling well, his skin was cool and clammy. Owen wobbly walked up the stairs with me, I gave him additional oral medication, a warming rice pack, a blanket and we slept together for a few minutes on the couch and then he vomited up the medication. We cleaned him up in a warm bath and he was visibly declining by the minute- now unable to walk on his own or respond to simple questions. We gave him his emergency inject-able steroid and simultaneously called the ER to let them know we were on the way. Shelby loaded Owen into my truck. Like clockwork we entered 'Go Mode'.... There's no time for tears, no time to panic, no time to make plans, only time to act. No time to call an ambulance for Owen. In these situations an ambulance isn’t the most efficient choice- as Emergency Services don’t carry injectable steroids and getting him to the hospital as quickly as possible is priority. We don’t need to confirm tanking vital signs with EMT's who don't have the resources on board to rescue him and we don't have time to wait for a round trip to town. Shelby buckled Owen in his seat and a nanosecond we exchanged a quick "I love you" and I left with Owen on the way to the ER. We didn't need to talk about it, we’ve been here before, we know the plan. But, we knew this was worse than the other times. I drove and Shelby stayed back to make arrangements for the older kids who had not yet got out of bed.

I drove to the ER with one eye fixed on the road and the other in the rear view mirror watching for any sign of recovery. I shouted at Owen over and over again, letting him know he is going to the hospital and he needs to fight. I ask him to stay with me and let him know we still need him here. He didn't respond and his body hung limp on his seat belt.

I parked in front of the ER door, pulled Owen's body out of the truck and carried him to the door. I knocked on the door with my foot, because Owen is getting too big for me to easily carry. As soon as we get in the door we lay him on the ER bed and it's obvious how bad off he was.  His body was cold to the touch, his skin was a splotchy shade of purple next to the stark white sheet, and his breathing was shallow and rapid. Without emotion I quickly recount every second of the past hour with the ER staff to let them know how we found him, the rapid deterioration from him being semi-alert & able to stumble-walk to unconscious, what oral medications we tried, what dosages, what his temperature was, how many milligrams of steroid we injected him with, every detail of his health & observed condition in minutes, hours, and days prior. every. detail.

The ER staff begins protocol- blood pressure (dangerously low), pulse (dangerously high), blood sugar (stable)… they start fishing for a vein because he is a hard poke on a good day and finding a vein is more complicated when he is crashing….. more checks, more medication, more fluids, only marginal improvements, and then we flew out.

I got on the little plane like I was boarding a school bus. I was too numb to be scared of flying at hundreds of miles per hour in a little plane. The flight crew searched for a vein with an ultrasound machine. They carried another inject-able steroid- ready to be given at the first sign of further decline. In under 30 minutes we land in Rochester and took an ambulance to the hospital. Owen is starting to respond to questions a little bit. He is transferred to the PICU and I recount everything that happened up to that point to the doctors there. About an hour later Owen, groggy like a bear in the spring, made a joke. The nurse was helping him with his underpants. The nurse said, “let me help you with your pants.” Owen giggled and loudly told him, “I don’t have any pants on!”

Just six words from Owen, but I knew he was going to be just fine. Like his mom and dad, he has a sense of humor that knows no situational boundaries.…and just like that, recovery began. A common stomach bug (gastroenteritis) struck overnight depleted his daily medicated cortisol reserves and his body had nothing left to fight with and started to shut down. It wasn’t until we treated him with well over triple his normal dose did he start to come around. …and no. We can’t treat at higher levels every day to cover for the potential for illness- high level long term steroid use has horrible side effects, too. It’s a tightrope.

This week the whole story and every scene has been on auto loop in my head- a never ending string of thoughts at all hours of the day and night. Every now and then an old-rerun of his past crisis moments sneak in to the sequence. Then I analyze the differences, the similarities, and try to strategies a more successful path for the next one. Part of writing and recounting this event is to get it written down so I don't have to remember the agonizing details anymore, so I can forget and find it later when I'll need it.

Someday the next crash will come, but we won’t let Owen live in a bubble and all kids will get belly aches and sick bugs. We are committed to living each day we’re given.  For each one of us, born healthy or not- we have to realize every day is borrowed time and we don't know what random tragedy is in store for us tomorrow. Through science Owen is gifted life and we are gifted with knowing his sweet soul. Owen could live to be a healthy old man or he could be taken down by a simple stomach bug before he makes it to high school. Adrenal insufficiency is truly the Achilles heel of our fighter.  We wonder if the next crash will be worse? What if Ashton hadn’t heard Owen gagging and gasping. What if he hadn’t woke us up to alert us? What if something happens to Shelby or me.. who will take care of our children? How do you live without spending every moment managing the risk? How do I make my eyelid stop twitching- lol!

We all have a limited time to make the most of this life. Life can't be lived by managing every moment and reliving the trauma of our past. So, how do we do it? How do we move forward? We just do and life just does. Life goes back to normal and everything that happened Monday already feels like it was another lifetime ago. It’s weird. We go back to our regular life, because we refuse to be paralyzed by fear. Because adventure is out there and life is too short to shut ourselves in from the world. We take time to reflect, take a few Tylenol for the headaches & sore muscles from sleeping on hospital benches, and take away the pieces of the experience we can learn from. But we try not to look back too long, because that’s where the pain lives.  It’s almost like we live our life in an alternate universe- mixed with equal parts of joy, pain, hope, and an unwavering faith that despite all the odds- we will survive every storm. This time was close, we almost lost Owen…But, I can tell you with every fiber of my being there wasn’t a moment in that ER that I thought we would. I knew it was going to be ugly and we were dangling dangerously close to the edge, but he is so strong and stubborn and we are too. We know he will fight as hard as he can and we will fight when he can’t. Because when it’s time, we will go out of this world living- not dying. We could spend days dwelling on how close we danced to the line this time, but we won’t. We pack those thoughts up and pitch them to the curb, they're not worth more than a few days of brain space. We’re going to keep dancing everyday and just have faith and hope that this dance, that this adventure- lasts forever.

Taking Back Time: Our Bucket List Summer

Every spring for the last 8 years we have worked with many of the boys medical service providers to schedule occupational therapy, physical therapy, speech therapy, and as many of the routine and yearly specialists visits during the summer break. We have done this to ensure continuity of care, avoid excess missed school, and prevent regression of skills gained through a consistent therapy schedule. During the summers we have had the opportunity to use new and different equipment and tools to help Ashton and Owen make greater gains toward their goals. We have re-arranged work schedules, juggled child care, made hundreds of trips back and forth to appointments, and invested hundreds of hours creating fun/productive therapy sessions to achieve skills- and we've made progress! The proof is in the pudding and we have seen with our own eyes the difference the time we have dedicated to them has made, but time is a tricky friend. We exchange our time to improve their quality of life. We gain life skills, smoother walking patterns, a more sturdy gait, more clearly articulated language, more fine motor control, greater control over their emotions, and gains toward more 'normal' lives. But, no matter how much time we give- we don't get time back and we haven't yet figured out how to get more hours of of a day. It's just not how time works. Time is the most precious commodity of our earthly being.

Over the last year the dial has been turned up on the number of appointments the boys require to keep their health in good shape and as we look ahead to summer 2019- we know it will likely be a challenging one, as Owen is on schedule to have his palate reconstruction/bone graft surgery then. We will need to commit a lot of extra time to preparing for the surgery and for the many followups and cares he will need after the surgery.  I know we can't turn back time, but this summer we're going to take some of it back... This summer Shelby and I have made a conscious decision to forgo all summer outpatient services for our boys. We're taking a break and we're taking back our time.

As parents of three (two with complex medical needs) we've become increasingly aware that somewhere in the midst of our demanding schedule our kids have started to grow up. This fall Ashton will be beginning his second year at the middle school, Kiera will be in 4th grade, and Owen will be in 3rd grade. Time is flying by and we need it to slow down. We need time to be a family, so we are clearing the schedules of some of the extra effort and we're committed to adding in more family fun.

I'd be lying if I said I was all 'cool' with this... I feel anxious, guilty, and excited. I feel like I'm letting down all of the special people that work so hard to help our kids achieve their goals- I hope they can understand why such an involved family is taking time off.  I feel personally guilty for squandering our time to live in the now and not actively working toward the bigger picture of achieving their goals- what if taking time off results in Ashton having a sloppier gait pattern in the fall? What if Owen doesn't practice saying S as much as he should?! I am full of guilt over those things, but the prospect of just being a family has me filled with enough excitement to counterbalance all of the guilt. I am excited to have three children who are mostly independent, who can articulate their needs, and who still have enough wonder and awe to be amazed by the kitchy-quick-stop-tourist-traps... I am excited to have three kids who love each other (most of the time) and still enjoy playing together and doing kid stuff. I am excited to feel like we can go and enjoy new places and family activities without it being 1000% stressful or feeling hurried/rushed to have a good time. We still have some appointments and specialists we HAVE to see this summer, but we aren't adding more.  When we do have to travel to appointments, we are making plans to not make the day about the appointment- it's going to be about the activity we are doing that just happens to be in the same area.  THIS summer we are taking full advantage of the spark of childhood our kids still carry and filling our buckets with memories.  We have our summer bucket list all planned out, printed out, hung on the fridge... ready, set, go make memories!

Mother's Day Without a Mom

Mother's Day is one of my least favorite holidays. I am a mother of three amazing kids and every Mother's Day I am thankful for every craft, card, kiss and hug to wish me a happy Mother's Day. On this day I celebrate the blessings our children have brought to me. Yet, the day is still stained with a cloudy sadness. My mom has been gone for 8 years and wishing a happy Mother's Day to the sky isn't the same. In the time of my life when it would be most valuable to have a mom to talk to about life, kids, struggles, and success- she isn't here.

My Mom had struggles of her own. There were years she was a really great mom and there were times that fighting her own demons took her away from me, from my sister and my brother. My mom was not the mom of Hallmark movies, but I would give up every Mother's Day just to talk one more time. Even though my own mom's struggles often took her out of my life for days and years at a time, I knew she was still out there and I found comfort in that the same way you find comfort in knowing the sun will rise every morning. The sun rising is not something I actively acknowledge every single day, but if the sun suddenly stopped shining my world would be turned upside down. When my Mom died it was like cosmos that align my world shifted just enough to add a few extra minutes of darkness to each day. Some days it's not a big deal, but every now and then I'm reminded just how great a few more minutes of sun would be.

When Kiera was even smaller than she is today, she asked me to get her a snack because she couldn't reach.  I jokingly asked her what I would do for her when she got bigger. She said, "Be my friend." I will never forget that moment as long as I live. Her quick and confident answer filled my heart with so much happiness. Even as a tiny child she knew that time would change our relationship, but there would always be a place for me in her world. The place in my world that held my mom is now a dark star in my universe. Bits of stardust still mark her place in the sky and every Mother's Day it's like that stardust eclipses the sun for a few minutes and it's unavoidable to not acknowledge the sadness that her passing has left in my life.

This Mother's Day if you have a mother somewhere on this earth, give thanks. Give thanks for all she is and all she's not, for the good days and the days she wasn't there, for every hug and every fight you ever had with her, for the good memories and for the ones that made you stronger- give thanks. Because for 9 months she chose you. Because even if she was absent in every moment since the day you were born, for nine months she chose to put you ahead of her own ambitions, her own life, and above all else she chose you... and if you are thankful for your own life, take a moment one day a year to be thankful for her.

Trudy Darlene Kubista 1958 - 2010

Cookie Culture

A friend of mine recently posted an article about "What Lessons Do Girl Scouts Learn Selling Cookies?" It highlighted her fond memories of selling Girl Scout Cookies and sighted some very convincing statistics to show that involvement in Girl Scouts can help foster success that can last a lifetime. The author reminisced about setting cookie goals and the satisfaction of meeting those goals and the sting of disappointment when she did not.

For the last two years I have looked forward to cookie season with my Girl Scout. It's a chance for her to participate in valuable sales experience and a great time to connect with friends and family. It's a fun and yummy way for everyone to support the awesome ambitions and great opportunities the Girl Scouts offer our young daughters. In the next few weeks we will be making visits to our family & neighbors with our scout and, as parents, bringing the tempting order sheet to our workplaces. We fill, sort, deliver orders together as a family and our Girl Scout personally writes a thank you note to every person that orders. This experience offers great life lessons in sales, money managing, gratuity, and teamwork.

I agree that selling Girl Scout Cookies is an incredibly rewarding experience for a Girl Scout, but this week I see the "Cookie Culture" spiraling out of control. Many clubs and groups participate in sales endeavors to raise funds for their clubs, but I have never witnessed anything that has compared to this weeks fundraising frenzy. This week my Facebook news feed has been flooded with messages from parents staking their claim on potential Girl Scout cookie sales. Facebook posts soliciting sales, grappling for email addresses, and posting astronomically ambitions goals for their scout... and I get it. I haven't been immune to the hysteria and admit to a single post asking friends and family to let us know if we can stop by and see them. Today as more, and more, and more messages flood my news feed- I feel sad. 

As a career marketing professional, I find it rewarding to teach our own Girl Scout about marketing, sales, and the power of social media and non-traditional means of connecting with your potential market. But, the tone of this cookie season is already taking a turn I won't be on the ride for. The entire sale is taking on a tone of the dozens of get rich quick, high pressure, copy/paste, generic, and disconnected multi-level marketing messages that blow up my private messenger and news feed everyday.... Girl Scout cookies are being peddled just the same as the latest multilevel marketing product and it makes me want to run from this cookie season faster than an old high school friend slyly adding me to their 'secret' inner circle sale group that's guaranteed to make me rich and reward me with huge hostess benefits.

I get it, though. The pressure of staking claim to potential clients, selling and meeting increasingly high troop goals (especially in our more rural areas) is a lot of pressure for the Girl Scouts and families who are already struggling to balance work, home, school, activities, sports, church, and dinner. Many troops, like our own, are small and can't afford to front the huge amount of cash to purchase stock and set up point-of-sale shops... and potentially be stuck paying for overstocked inventory of less popular flavors. The never ending news cycle of abductions and attacks on children have many families retreating from door-to-door sales to strangers and exclusively saving their direct sales activities for close family, friends, and coworkers. Turning to social media is a quick and easy audience.

The average sale season is less than a month. To achieve a "low" tier goal/prize level of 220 boxes each girl would need to sell at least 8 boxes every day of the month.  Many troops only sell for 2 weeks- that means these girls need to sell 16 boxes every day to reach this "low" level... and at $4 a box that's managing $880.00... wow! When was the last time you handed your 9 year old almost a grand to manage? When you were 9, how many adults did you really know? Would netting a grand in cookie sales have been possible?

The Girl Scout "Cookie Culture" has become cult like (much to the delight of the entire Girl Scout organization), but between the memes about our young daughters being 'dealers' to the sliding scale of prizes and patches with promises of cumulative prize hauls for incremental levels achieved, to a virtual cookie group to track scouts progress along side their troop, and Scouts pressured to ask those who are on a diet to buy boxes to donate in lieu of purchasing a treat box- among many other selling 'tactics'... it's all just too much. The pressure to spare our daughters the disappointment of selling a measly 60 boxes (there are no prize levels below 60 boxes and a patch is only earned after selling at least 25 boxes) turns us to the largest group of people we know before sales even start in attempt to elbow our way into the market. The internet and social platforms have afforded us many advantages in direct sales, but we have to ask ourselves if there is meaningful lesson for our scouts beyond a few orders from social media connections?

I don't know how to counter this movement without feeling like I've let our girl scout down or offended almost every other cookie mom I know. We continuously hear murmurs of raising entitled generation of children- and instead of setting attainable goals- we are encouraged into exploiting our own relationships and social connections to pad cookie sales and produce windfall numbers. While, learning the power of online marketing and digital sales is incredibly meaningful, I hardly think mass canvasing the closest social media connections of parents on a digital platform is a meaningful life experience. In fact we can somewhat predict the outcomes of this trend when we look at the longevity of the actively employed sales force in multi-level marketing companies.  Multi-level marketing models rely heavily on immediate gratification and reward, but provide little hope for long term return and personal fulfillment. How many social media 'friendships' will we as parents burn to sell cookies? How many people will begin to cringe when we announce cookie season is coming?

...I have a Girl Scout and due to the over saturation of sales pitches I am nearly burnt out on the season before it starts.  I know there will be scouts in our community that will haul in cookie sales in the thousands through online connections and I hold no ill will for those scouts that find such huge success, kudos to you.  I just wonder at what cost will this high pressure selling climate and social media sales be for the entire Girl Scout community and future selling seasons? 🍪

What I needed to hear 10 years ago

What if I could hop in a time machine dial it back 10 years and tell myself some things about raising a child with a disability... 

This child will change you. I know how cliché that sounds, but seriously. Your child's life will be different and so will yours. Your relationships will change. The way you look & respond to the world will change. Everything will change in a way that is more dramatic than you could ever imagine. You have bravely accepted a life that some would have ended before the child developed beyond a cluster of cells. You will emotionally experience the most unimaginable highest highs and the most devastating lowest lows… there is no way to explain the incredible joy you’ll feel when your child accomplishes the most mundane skill that every other person in the world takes for granted. You will celebrate like just won the Daytona 500 when your child uses a two finger pincer grasp to pick up a Cherrio, because this is a skill you have worked on for years…. And only a few people will really get how happy you are or remotely understand how important a two finger pincer grasp is to learning how to someday tie their own shoes. You will learn to find joy in the mundane details and somedays the world will seem almost magical. And there will be everyday angels. There will be people that grace you with the smallest most boring gifts, but their thoughtfulness will mean more to you than a bar of gold. A thoughtful heart bearing pair of longer shoelaces to a child with a fine motor skill problem and to a mom who just can’t seem to remember to buy them during her trip to town will restore your faith in humanity.

There is also no way to explain the lows you will feel.  You will commit years of your life to nurturing and willing this little person to thrive, but it won’t be enough.  Because, even though you have successfully siphoned the energy from the universe to persevere through the darkest of days, through endless nights in the NICU, through years of therapies, surgeries, endless appointments, and paperwork- it won’t be enough. One day you’ll realize there will always be appointments, therapies, surgeries, specialists, paperwork, and somewhere you need to be. The thought will be crushing, but you can manage a schedule. It’s okay, right? It still won’t be enough. You child might be handed another diagnosis to add to a list that grows every year. Your child might have an unexpected medical setback or emergency. But, you can make it through that.. you’ve made it through all the other stuff! Have you had enough yet? The universe doesn’t think so.  You have done everything in your power to help this child thrive to their fullest potential in the formative years, but it won’t be enough to protect you or your child from the awful world that is outside your door. The universe you can’t control. It won’t be enough to protect you from feeling like the most miserable failure when you can’t command the universe to see the world through your eyes.  It won’t be enough to protect you from the grief you will feel over and over and over again when you realize how different your lives are.

One of the hardest things as a parent of a child with a disability is when people start to notice that your child is 'different', because for the first few years of life you can somewhat control the environment that you and your child is exposed to.  You can surround yourself with family and people who understand your struggle. You don't have to go a lot of places where there will be questions. For the first few years it's easy to mask some of delays because babies are babies and nearly everybody loves a baby! All babies are relatively helpless and require most of the same things- even with a visible disability there is some sort of evolutionary mechanism that tells us all babies are worthy of love and makes us all want to coddle and love every baby.  As long as your child appears content strangers will typically smile and oogle at your baby like all other babies and they won't flinch at 'quirks' like your baby wearing glasses or if his nose is a bit crooked... and if they do inquire they will likely do so in a more caring way and say things like, “But he has such gorgeous eyes!” They will work to deflect attention from any obvious disability. 

But, it's when the child grows into a toddler that the world begins to realize that your child is 'different'... strangers will suddenly reaize that your toddler is not walking, but in a stroller. The world will realize that your child is not on the track of other toddlers and they will pinpoint all the things that don't fit in the 'normal' stereotypical toddler category.  ...and often they will feel the need to comment... and now more often in very insensitive ways. You’ll wonder how the world can’t understand the immeasurable struggle that you have already gone through just to get to where you are at that moment… and in that moment you’re probably standing in aisle 5 of the grocery store.  You’ll stand there and wonder how the same parent that has commanded the power of the entire universe to survive the last two years can suddenly be wondering how you’ll survive another trip to the grocery store. You’ll realize that your ability to command the universe was mostly the result of how small your universe had been and that the universe is ultimately endless. This moment will trigger some very visceral emotions and with that will come enormous grief. 

Yes, parents of disabled children grieve.... and new parents to the special needs circle might not recognize the process. It took us two rounds and a lot of reflection to realize, on this journey of raising a special needs child, as parents we grieve a lot.... and the grieving doesn't end, but comes in waves.  You'll experience days/years of calm seas and one day a poorly delivered comment from a stranger about your child's disability can send a tidal wave through your world.

Recognizing and sorting through the grief is critical. You have to recognize that when you react negatively to the worlds view of your child you are internally grieving the child that he is not. You can't properly respond to those hurtful comments, stares, and situations if you have not dealt with and accepted your own negative feelings about your new family. You will hyperfocus on the things your child is not or might never be and will suddenly be drowning in self-doubt and sadness… and trust me- you don’t have time for these feelings. Deal with them!  As a parent, you have to recognize and work through that grief. Before you can truly celebrate all your child is you have to accept all he is not with your whole heart. When making the choice to begin a family, we all have the picture in our head of our family... I am willing to bet 99.9% of those visions did not include a child with a life changing disability. When you lay in bed at night after a long day and start to cry, it's because life isn't fair and you know it. This isn't what you signed up for and it’s okay to say that out loud! You don’t have to pretend that you're always okay with it. It’s all pretty shitty sometimes, but you only have about 20 seconds for a pitty party because that’s exactly how long you have before somebody knocks on the bathroom door. So, you have to recognize this is part of the plan the universe has set for you and because you love your child beyond all measure, you have to accept this life with your whole heart. Half-sies will not help you deal with this, you have to go all in. You have to give yourself permission to grieve and work through those emotions, so you can make the next day better and not be bitter. 

Learning how to manage that grief is a huge piece of learning how to respond to those who recognize our child is different, because in the last 10 years, I’ve found that as your child ages and the gap widens between them and their peers those grieving moments occur more and more frequently. Not only are the adults around your child aware that he is different, his peers are now developing the awareness, and so is he. Once you learn to manage the emotional ride, managing your response to those people who point fingers and stare is much easier. The tidal waves become a rolling wake. You will be empowered to educate those you have negative encounters with. It becomes easier to approach those children on the playground and have a very casual chat with them about how your child has two eyes, two ears, a nose, and a smile.. that the things that make them different are far fewer than sum of what makes them just the same. It’s easier to politely reply to the rude comment in the grocery store about your child’s behavior… and it will be easier for your child. Because they won’t regularly see their differences as a burden, but begin to recognize what makes them unique is what makes them who they are. Their self-worth is highly dependent on your parenting, so get it together Sarah. Everyday won’t be roses, you are still raising a child and they have normal child issues, too.  

There will definitely be re-runs of the crappy comments, because there are some really crappy humans out there. Disability or not, we all have to deal with those people. If they weren’t telling me how awful my kid was acting, they’d probably be telling me how ugly my purse is.  There are just crappy people out there. But work the work and it’ll get easier, because by working through the grief you will find peace and the everyday hiccups will just be annoying, not earth shattering. You will find peace in your purpose and place in the universe. 

The initial journey through the grief is emotionally and physically exhausting, because nobody has really given you permission to get angry and fully grieve the death of your fairytale life that you dreamed about. But, do it! You’ll find out your life is way cool and more magical than you thought.

Your success as a special needs parent is dependent on some form of self-care and reflection. Pretty soon that reflective trip to grief-town will be like grabbing a gallon of milk at the gas station- quick, a little annoying, but necessary to keep your family firing on all cylinders. Taking care of yourself does not make you some who-do-voo-doo earth momma who thrives on vibes, but if you want to be like her- that’s cool too. Give yourself a break. Your life is cool and so are your kids.. and remember we are all just moms passing each other on the street trying to keep their kids from eating the candy they found on the ground. None of us are really all that different. 

It’s time to get back in my time machine now, take care. I mean it. 

For the Greater Good

I've noticed something lately...  There are about 30 people around my age I see a lot. Nearly all of these people are mothers and fathers with young families like ours. I see them a lot in and around our community. I see these people more than just at school drop off, kids concerts, and at our kids activities. Most of these people aren't my closest friends, but a handful of them have become really amazing ones to me and my family.

These 30 or so people and their families are the awesome ones I see volunteering out in our community. These people are doing more than just supporting a cause, they're out there making it happen. Seeing them so often isn't the problem, not seeing any new faces is. 

Look, I know it's hard.  It can be really hard. We have careers, little kids, dinner to make, laundry to wash, and groceries to get. We all do... But, we need you too. Your community needs you. In almost every volunteer capacity I have participated in- there has always been a need for more help.  There are letters for help, facebook posts asking for people to step up, and volunteers out there asking for more hands to lighten the load...more help with school events, more people willing to help coach sports, more people to help with activities our children are involved in, more help to organize the club fundraisers, help with programs at church, more help to put on the community events, just more help...

and more often than not those calls for help are met with the sound of crickets. I know it's challenging to balance it all, but it seems the pool of people willing to try continues to shrink.  It's easy for us to recede​ into our familiar patterns and leave the work for the ones who continue to put the effort in. The phrase 'many hands make the load light' seems to apply well to this situation and too often I see there is a severe load on the ambitious few that do make the commitment to volunteer for the greater good.  In most instances these volunteers don't have more time, more energy, or more resources than any other person. What they have is a drive to make our kids activities successful, to make our community better place to live, to help lighten the load or to just make a difference in a world that seems so upside-down.

I'm not trying to guilt anybody into volunteering, but implore you to try it out. There are so many ways to lend a hand and many of those opportunities can also include your family! Together you can not only participate in the many activities & good will causes in our community, but you can help ensure those activities & causes continue to have a positive effect on our community and our kids.  With any luck, participating in a volunteer experience will have a positive effect on you & your family too!

Without the continued efforts of volunteers many of the opportunities, activities and organizations that you and your kids enjoy will disappear. Our community is a great place with lots to offer, maybe you could consider giving it a little of your time to keep it that way.

Hope

It was a horrible morning. There's no sugar coating it. It's a real crap way to start the day by denying your children breakfast and morning medications (knowing full well missing breakfast and delaying medication times makes their bodies and brains feel awful), then hauling them to the clinic to help hold them down, listening to their screams, watching tears stream down their cheeks, while nose-to-nose looking them in the eye and asking them to be tough and telling them it'll be over soon....but all the while knowing this cycle has no end. We'll repeat this same moment in three months. every. three. months... and that's if nothing changes.

These days are my worst. Today I am beyond angry. I am broken and I'm trying really hard to not be bitter. We lie to ourselves to get through the worst moments of our lives and when the moments pass the truth comes crashing down.  It sucks. These are the moments bad habits and ulcers are made of. There is no amount of namaste that can make me unhear my child screaming and clearly articulating how angry he is that his "stupid body is broken" and how "dumb it is that he was born so sick"... there're aren't enough "I'm sorry's" to make it better.  There isn't anything that can be said to make this any better.

When I hear people say things like, "God gives special kids to special parents" or "God won't give you more than you can handle" or  'it'll get better' or 'they'll get better at that kind of stuff.'  I know they say these things, because it comforts them. It's how they can live with those moments. Well, the truth is- I'm not special, it's more than I can handle, it's not getting better, it's been pretty bad for a long time, and today I'm tired.

I don't find any comfort in cliche sayings from couch pillows. On these awful days, my faith and hope in God are all I have left to give to the world. With the same eyes and ears that have seen all that is awful in this world I have seen the miracle that is this life. I have seen a child whos body had been devastated by an unknown illness finally build the strength to walk. I have heard the promise of another day in the first gasp of air that gave life to a child on the brink of death... and it gives me hope. It gives me hope, because we live. If we are destined to live, there must be a greater purpose for our existence in this world and that gives me hope tomorrow will be a new day. If you have one thing left in this life, have hope. 

     

Why you should care what I am paying for prescriptions.

I've been reluctant to share much about our boys medical journey lately, but the current conversation about life saving medication cost is important and I feel compelled to share my thoughts.  The media coverage is helping in a main stream way to expose the price gouging practices of the pharmaceutical companies. Nearly everybody knows somebody who needs an EpiPen and is outraged by the unexpected price hike... all unfolding while the CEO enjoyed millions of dollars in the form of a raise over the same time period. Not only is this price gouging behavior a crime to the patients, it is a crime to every American paying insurance premiums. Even if you don’t use this medication, you have paid premiums to help cover the cost of the overinflated prices set by drug companies. You might not need a lifesaving medication or medical attention today, but somebody does.  When you pay your health insurance premiums your money goes into a pool- some take more, some take less. In an ideal world there should be enough money to cover all of our medical woes. But if your premiums have skyrocketed the last few years, like ours have, it’s obvious there’s not enough money in the pool. But, why?

Greed. Extortion. Egoism.

Our boys rely on a lifesaving medication, Growth Hormone, to survive day-to-day. It not only helps them grow (as they would not without it- their bodies are incapable of physical growth due to lack of critical hormones) it helps maintain many of their vital functions. Growth hormone is critical to survival, but there’s hope! Over 30 years ago scientists created a bio-identical type replacement that can be easily administered via nightly injection and it was quickly produced by at least 4 different pharmaceutical companies… and life is restored! For many people worldwide, replacement hormones are critical to maintain vital functions for survival.  Our children would not survive without replacement hormones.  Families like ours are slaves to the pharmaceutical & healthcare insurance industry and subject to their whims. 

We have been in the middle of fierce insurance coverage battles in which the specialty pharmacy would not release the critical prescription in a timely manner due to coverage challenges out of our control. Unfortunately, much like a EpiPen patient, any delay in administration of medication could mean death. It has been plainly communicated to us that the all mighty dollar is in the driver seat, not the person who could face death when forced to go without lifesaving medication. Your life is only worth the amount of money the pharmaceutical industry & healthcare insurance industry can make off you... if you cost them too much, you might die. That is realty. We live in a ‘Hunger Games’ style reality, the pharmaceutical companies and healthcare insurance industry are the Game Makers… we are the tributes.

Two years ago it was our turn for the reaping… it was our turn to see if we could survive long enough to win the game. Our insurance company began a battle for their brand preference of the prescribed medication. Much like an elite athlete- insurance companies have drug manufacturers as sponsors… these drug companies negotiate lower prescription rates and in turn your insurance company only allows its patients to use that drug, even when many other cheaper options might be available. The specialty pharmacy would not order in the schedule II drug without a brand preference, because it is a federally controlled substance and the cost of the prescription. The specialty pharmacy could not take on the overhead of accepting delivery on a product that they may not get paid for. We, as consumers, couldn't even buy it. We had dialed down nightly dosage to half and then to a quarter of normal dosage when we could see that the insurance battle was not going to be won quickly…Ashton would be able to handle the temporary dial down, but it wouldn’t be enough to meet Owen’s needs.

We pleaded with the pharmaceutical company, the insurance company, the pharmacy, we called our congressmen, we called on everyone we thought could to help us get Owen’s medication. Finally, after weeks beyond our last dose, our insurance company won their brand preference. This battle resulted in a three-week delay of our prescription delivery, three weeks of missed dosages, a 30 minute long hypoglycemic seizure, a 200 mile ambulance ride, 4 day hospital stay at the Mayo Clinic in Rochester, and years of trauma done to a 5 year old.... I don't think our insurance company really 'won' once the insurance claims rolled in from that whole mess. But, they said they did.

As tributes, we happily do our part, because we want the ones dearest to us to live.  We give our children injections every night, they have blood draws & appointments every 4 months to ensure proper levels, we call and request refills no more than 4 days before the prescription runs out and carefully schedule delivery, we pay our premiums, we submit the mounds of paperwork & evidence required every year to prove that we were not granted a spontaneous miracle of perfect health.  We play the game, we follow the rules.

But, it’s a game and it’s a fact that 1 in 3 people will be subject to disability or life threatening illness in their lifetime.  We will all be subject to the reaping…. It’s just a matter of time.

The picture here is last month’s receipts, just one month of medication... a medication that we've seen the price quadruple over the last few years. That's a total of $6705.70 for one month, every month, forever... this is the retail price for just under ONE fluid ounce of medication. We pay our premiums and play the game, because we need to.  I don’t know a single person who could actually pay that every month, but I am not so naive to believe that there aren’t people who are forced to…. or they just die.

We are equally thankful and sickened by the healthcare insurance & pharmaceutical industry. Our coverage now nearly covers all of the balance.  But, we know that this cost is paid by us and paid by you. We feel the sting when our insurance premiums go up every year, when your insurance premiums go up every year, when our government screams that a public option to healthcare is impossible... this is why. When pharmaceutical companies & healthcare insurance industry are allowed to charge these kind of exorbitant prices we all suffer.  They are the game makers.

"Being like everyone else sounds pretty dull to most of us..."

I haven’t blogged much recently, as the main focus of my blogs are usually my children.  As they grow I am doing my best to respect their privacy and limit the amount of personal information I share about them.  But, this week as I was shuffling Owen to his four separate specialist appointments at Gillette in St. Paul I felt something, something that I felt would be worthy of a new blog entry…. I felt like we fit in.

"Being like everyone else sounds pretty dull to most of us, but for some, a chance to be like everyone else is one of life's greatest prizes."

Because of our children’s complicated medical conditions we’re regulars at major medical facilities.  It’s a bittersweet homecoming each time we are greeted by name by the reception staff. Even more bittersweet is when we see families with infants on the beginning of their journey- how isolating and lonely it is at the beginning.  A children’s hospital can be as equally magical as it is somber. As parents, we are all brought together for reasons no parent wishes for. We are all wounded from the battles our children fight and for the battles we fight for them every day. The wounds are deep, but the love we feel for our children is so much deeper. We are fueled by the fumes of hope and caffeine and we solider on to the next battle with the strength of a thousand armies. We often feel intensely defeated by the process and all the procedures, but we fight on. There is no battle too big or odds too long, we solider on- we must.  

As we hustle from place to place still reeling with information from the last appointment with emotions somewhere between maniacal laughter, desperation, hope, anxiousness, and bravery- we connect.  We see each other in these transient spaces- in the brief moments between making up imaginary games to get your child to participate in therapy, between the poking and prodding, between tough procedures, between the surgeries and invasive exams.  In the hallway, with just a passing glance we share the triumphs and pain that is parenthood for people like us- and in just a nanosecond we find the comfort and strength to carry on.  We are not more or less of a parent than any other, but we are as different from normal parents as our children are to the world.

But, this is one of the things that makes children’s hospital magical.  It’s where we are like the rest of the world. There is such a strong sense of community and comradery among the families that walk the halls and sit in the full waiting areas.  There isn’t a sideways glance to be found or snide remark to be heard because, we have all seen and heard enough to last a lifetime.  Without speaking a word to each other, we all share so much.  Our most precious gifts are with us for everyone to see.  Our children with glasses, speech delays, birth marks, scars, wheel chairs, developmental delays, assistive technology, cochlear implants, feeding tubes, and every other medical related challenge imaginable- all together.  We pass along small smiles, compassionate glances, and giggle together when our children do silly things, but not a single ounce of judgement is passed. 

Our lives are filled with the same joy and pain felt by every parent on the planet, but with a splash of insecurity, fear, immeasurable hope, and unbelievable pain. Incredible amounts of energy are expended by a special needs parents in effort to make things as simple as grocery shopping be effortless.  In almost all ways- nothing is effortless. Nearly every success is a product of meticulous thought, planning, and preparation. The planning and preparation for some of life’s simplest errands can be exhausting.  We have learned to plan and manage the day-to-day excursions just fine, but what we can’t plan for is how people react to our unique family. It’s not uncommon to get a questions now and then about Owen’s flashy red glasses, his speech challenges, or his very visible medic alert tag- and for the most part these people are very polite and are asking with the best of intentions. I like those people, because I know they’re good. They seek to understand our family and I’m an open book for people like that.  Those moments have become easy to manage and not embarrassing in any way.  The part I have the most difficult time with is the people, families, and children that are old enough to know better- who can’t control their impulses to turn and stare or worse yet, yell at audible levels to another person within their direct group to, “Look!” 

If you’re reading this, I highly doubt you’re one of those people… and if you can believe it- Yes, it happens.  It happens more than you can imagine.  I refuse to ignore those kind of people, because I think it’s unacceptable to let them think that they can continue to carry on with such atrocious behavior.  I’ve done my best to passively confront these people with a stern look or witty comment- those are the moments I’m always on guard for. I want to shield my children from the cruelty of the world as much as I can… and if it takes me slinging insensitive and rude behavior right back, so be it.  

But, as I sat eating a snack with Owen in the waiting area I noticed I was kind of relaxed.  We were just having a snack, that’s it… not another thought in the world.  Just me & Owen having apple slices in a room full of strangers, who all undoubtedly seen us, but didn’t pause a second to analyze us.  I wasn’t on high alert hovering over Owen to wipe the bits of food that sometimes creep out his nose as he eats, I didn’t worry that his glasses were on straight, I didn't worry about the bags under my eyes or having a coffee stain on my pants from the rush of getting out the door at the wee hours of the morning, I didn’t worry about Owen's sometimes overly friendly nature making anyone uncomfortable, and I didn’t worry about new kids giving him the googly eyes or hiding from him. I wasn't on guard. I didn’t have a worry in the world… it was just as it should be. Just me and Owen having a snack. It was such a strange feeling to feel so at ease in a place so full of people we didn't know. But these weren’t just people, they were people just like us… 

You, alone.

Last night it was hard to put you to bed all alone in the room you share with Ashton. It was too quiet for me and I know it must have been for you.  Ashton and Kiera spent the night at Grandma's and Papa's house since we needed to leave so early for your surgery.

Daddy and I got up early and loaded you in the back seat, alone. Together we drive to St. Paul, checked you in, met with your entire operating room team, and waited for the moment they would have us go back together to the OR.

As we sat in the OR room waiting for the anesthetists to get your mask ready for the ninth time in your little life, for the first time you told me you missed your brother.  I'm sure because he so often is by your side for these kind of visits- he helps you be brave.  I miss him, too. In these moments I miss it all- all the laughter and happiness that radiate from you, Ashton, and Kiera.  It doesn't exist here. It doesn't exist in the OR or in the room where we wait for you to come back to us from surgery. 

When the doctor was ready you took a few combative breaths from the mask and off to dreamland you went... alone.

I'm so sorry it has to be this way, baby.   I'm so sorry that so many of you battles have to be fought and won alone.  It's no surprise God has made you the strongest one in our family in sheer will power and brute strength- you need it. Sometimes your bull headed determination is a challenge to wrangle in our everyday life, but I know it's what gets you through moments like this. You have endured more challenges in your short life than entire communities of people have in their lifetimes.  You are so strong and so brave. You are my hero, Owen. 

We will always be there to pick you up and cheer you on when the days are hard. Please don't get discouraged when you feel alone, because you're not.  Just because you can't see us doesn't mean we're not with you. Your God will always be with you, me and Daddy will always be here, your brother and sister, your family and the many people you inspire by your courage. We will always be there to cheer you on and  give you the courage to win the next battle. 

In moments like this, I hope your heart will always be so full of love that it's impossible for you to really feel alone.

Why.

The last few weeks Ashton & I have been regularly butting heads on a myriad of topics, most have been testing his power & pecking order. It's been exhausting and a strain on our entire family dynamic, but this too shall pass.

Ashton's been mad, anxious, and frustrated since yesterday morning- but this is different.  This isn't his typical eight-year-old tantrum we've learned to navigate around, he's rattled by an unfair world. We've begun a new chapter in managing a lifetime of chronic illness- when your child unequivocally understands that life isn't fair and these routines and medications are forever. Forever.

Yesterday morning before dropping the kids off at camp I had to drop off  three human specimen boxes at the lab- these lab kits are mailed to us by the boys specialists at the Mayo Clinic in Rochester 3-4 times a year.  They contain many empty blood vials and very detailed lab orders. We drop them off a few days ahead so the lab has a chance to sort through what is needed before our arrival.  Tomorrow morning at 8am sharp our local lab will complete the blood draws for Ashton & Owen, mail the vials on dry ice to Rochester, the lab in Rochester will process the samples, and results will be ready for discussion during our visit next week.

While Owen was happily cheering that he did not have to go into the clinic doors, Ashton was crying and asking WHY do we have to do this? Ashton is now at the age where he has a more in-depth understanding of what all the pieces to the puzzle mean.  He knows that when I drop off lab kits that it's not for me, not for Daddy, and not for Kiera- it's for him and Owen.

There is no other scientific method to test the levels of hormones in their bodies, blood work is required.  It's an awful task to comfort a child that is living in anticipation of tomorrows pain.  "Will it hurt?" ..."Yes, Ashton. Only a little, you know that." ..."Why do I have to do this?"  ..."To help keep you healthy, your body doesn't always want to do exactly what it's suppose to. Your doctors need to check to see that everything is working just right for you to grow and learn."  ..."All because of my stupid body." ..sigh.

It was easier when they were babies. When we only had to cuddle them and comfort their cries. It was easier to rationalize and have faith in a plan bigger than ourselves.  Now those babies have developed complex emotions and articulate language skills...  I can't coo and cuddle away the cries that fiercely demand explanation for his struggles. I can't articulate his illness in a way that eight-year-old can find peace.

I can't explain why.

Circus Life

This morning I'm feeling seriously conflicted. I am finding it increasingly difficult to maintain a "normal" for my children and our family, while managing complicated medical diagnosis'. I desperately want to shield our children from becoming exhibits in the ever increasing line up of professional appointments required for their progressive development.

The challenges of maintaining a successful 'special needs' family within our society is akin to circus life. Today, we have yet another appointment for a program director to come and meet our family. Like most, this meeting requires the presence and proof of our children's physical being and discussion of their uniqueness in comparison to the general population. I am growing weary of the side show feeling of having a family with a rare and complicated medical diagnosis.  Often, I feel that our life has become a traveling exhibition with a never ending stream of professionals lining up to oogle at our most precious gifts. Some on-lookers line up to help the afflicted, some line up to advocate for them, and some line up to claim a piece of their story. The constant flow of paper work requiring my observational response is the fodder for the playbill.  Each booked event that does not require the physical attendance of our main attractions is beginning to feel like a promotional blast, building the audience up for their big reveal.

Between the constant special assessments, the piles of medical appointments, never-ending invasive physical exams, steady demand of lab work, annual IEP meetings, behavioral meetings, program meetings, pharmacy runs..... This is circus life. I know the perpetual booking of shows is required to support the performers longevity within the norms of society, but I'm ready for this circus to leave town. I mean, doesn't the bearded lady ever get handed a razor and told to take a break?

Dear God, Its me.. Owen's Mom.

I'm taking a pit stop in a parking on the way home from Owen's eye appointment. I know we'll be home soon and I can't bare to wake him from the peaceful sleep he's found... so here I sit, looking for that same peace myself.

Dear God, Today was rough. Almost every appointment is. We are tired and I am trying so hard to see this through your eyes.  I am trying so hard to see through tears.  I am trying to take in the hundreds of appointments ahead of us that will fill our future....  I am trying to find the courage to take just one more at a time. I'm trying.

How can this be the plan?  How much longer can we fight for our future? Where will I keep finding the courage to restrain my flailing child and be the face of his pain?  How can I keep encouraging Owen to be brave when it breaks my heart? I have bear hug held him nose to nose with my eyes locked with his assuring him it will be okay... we're almost done... more times than my heart can handle.  Reassuring him with a constant lie on my lips. Knowing full well in a few short minutes it will be time to take meds, in a couple more hours it will be time for meds and shots at bedtime, in a couple more days another Mayo visit, and next week regular speech/occupational/physical therapy appointments...

..we're not even close and today I am out of gas.

I don't have any other outlet for answers, only prayers.  Please God have mercy on us.  Give us what we need to keep moving forward, to always find joy and hope in tomorrow, and heal our hearts so we can to put our whole heart into the next battle. Amen.

Merry Christmas to All!

Season’s Greetings Family & Friends,

We hope you are well and staying warm this Holiday season! It’s been another whirl-wind year for us! This year Ashton (6) is in first grade, Kiera (5) is in Pre-K half days, and Owen (3) has begun attending the three year old program at the Cumberland Elementary School two-half days a week and one day at St. Paul’s Preschool.  The school year has been packed with activities and new routines.  We’re all getting into the groove, but who knew the schedule would be so hectic?!

This Spring we spent time sprouting seeds for our garden, planting, and soaking in the warmth of the season.  Over Summer break we spent time at the lake and enjoying the area activities- summer school, swimming, playing at the park, fishing, and camping.  In July Shelby and I were able to jet off for a few days to Las Vegas for a much needed vacation!  It was so much fun- I’m sure it had to have been a dream! While we were taking in the Nevada heat the kids made some fun memories with Grandma & Papa Fox.   Before the school year we enrolled Kiera and Ashton in the youth soccer program in Cumberland. We spent a few nights a week shuffling schedules to make it work, but the season was fun and we all made new friends!  

Medically the kids are doing wonderfully.  We are on track for Owen’s future cleft related surgeries. We still have at least three more to go. He is developing well and making strides all the time.  Recently his speech has been the focus of our efforts and they are paying off! He is frequently using two word combinations and working hard to more clearly articulate his needs through words.  Ashton is growing taller and physically stronger every day! In the last eight months he has put on nearly eight pounds and three inches in height.  He’s still small for his age, but he’s gaining all the time.  It’s a blessing to see that his body is finally working for him. Both boys are now on a routine schedule with their specialists at the Mayo Clinic in Rochester.  We are thankful to have so many skilled specialists and hometown healthcare providers to be on this journey with us!   Kiera had her annual check and all is just as it should be- a happy healthy little girl.  She falls right in the middle for her height and weight.  

Shelby and I are doing great.  This year seemed to be a test of our resilience to tragedy and trust in God. We have been on the front lines of the incredible journey of raising our unique family for six years. We have been tested physically, mentally, and financially. Never could we have planned just how complicated our lives would become when raising medically challenged children. We have pulled through some really tough times and finally feel like the bits of sunshine we get during the storms are setting the stage for rainbows. 

My days are packed with my Mom duties, but my job with Adventures is a nice departure from the routine.  I really enjoy the marketing and social media management as well as the camaraderie of my coworkers- even if most of our communication is electronic!  I have continued my connections with my college and served last month on the Marketing and Business Management curriculum advisory panel.  More recently, I have been given the opportunity to work within our school district as a parent liaison to the help other parents navigate the special needs education process. It will be extreme part time, but it’s a position I look forward to. My heart goes out to those families navigating the waters of special education and I hope my knowledge of the process can be a comfort and asset to those in need.

As we celebrate Shelby’s 15th year of employment with Nexen, he will be saying goodbye to his career there.  Shelby has accepted a new position with Abrasive Specialists, Inc. in Minneapolis, MN as a Senior Application Specialist and Sales.  It’s an incredible career move that we’ve waited with much anticipation to announce! He will be beginning there after the New Year! Most of his days will be spent visiting accounts, in office, and some from home telecommuting. Shelby is really looking forward to the move and the kids and I are really looking forward to having him home in the evenings! 

2013 has been an incredible year! We have so much to be thankful for- especially your prayers, encouragement, and friendship.  We are looking forward to 2014 and the new opportunities it holds! Merry Christmas!

Love and Hugs Always,                    
 
Sarah, Shelby, Ashton, Kiera, and Owen      

2013 Fox Christmas Card