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...
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.
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.
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 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.
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? 🍪
