Gardening · parenting · special needs parenting

The Mom Birthday

I remember as a child being so excited for my mom’s birthday, and she was always just meh. It was terribly confusing to me that a birthday wasn’t cause for glee, after all, what on earth is better than a whole day set aside to celebrate you?!

Fast forward 28 years and it all makes sense.

My 10 year old awoke at 5:30.  I stumbled to his room and shoved his iPad at him and told him to just be quiet.

I had to dole out meds, feed the dog, make breakfasts, lunch and dinner, take out the trash, do dishes, and all manner of other daily living.
As per normal, Ben needed everything under the sun during my morning coffee, which while fully expected, is a touch more frustrating than usual.

As an introvert, I dream of a birthday on which the school bus arrives and I simply usher my dear offspring to the curb to enjoy a day of total quiet, though it’s just not to be.  My dear husband is out of town for mandatory training for work, which always falls over my birthday, which means I’m flying solo today.

Please understand, my dear daughter got me a variety of cheese for my birthday, which is wonderful, thoughtful and sweet.  My husband has something specially made in the works that will be ready on Saturday, so I am being celebrated, and entirely blessed, but today is really just like most other days; a day in which my primary objective is serving others.  


Alas, I sigh a deep, cleansing breath and remind myself of my days of longing for these children, and that next year at this time I will very likely be leaving my beloved daughter at college.

Perspective.  Sweet Alex keeps hugging me and calling me the birthday girl, and after lunch we’re going out Pokémon hunting, and I’m buying myself one heckuva cake and some premium burger to make myself a deluxe Bleu cheeseburger and a gorgeous watermelon from my garden  for supper. 


I may not be able to celebrate in a day that’s all about me like I did when I was a kid, but I can and will enjoy the little things that make a day joyful and fun, and 3 of those “little things” are the ones that call me “mom”. 

cancer · special needs parenting · Uncategorized

Big Pharma, Epi Pens, and the Medically Complex Life

People are righteously outraged over the recent price hike on Epi Pens, and rightfully so.  As a parent of a child who has required life sustaining meds, I’ve had an ambivalent relationship with Big Pharma for years.

Pharmaceuticals save my child’s life, there’s no other way around it.  The doctors and other scientists who have developed the meds and do the rigorous work to get them approved are heroes.  There’s no doubt that if Ben had been born in another time or place, he would not have survived his first 2 years, let alone 10.5.  From the depth of my soul I am grateful for the medications which save his life and sustain his wellbeing.


The flip side of that coin is cost. 

We are well insured.  Between our primary insurance and Children’s Special Health Care Services, much of Ben’s medical costs are covered , yet there are still many things we pay for out of pocket, and at the top of that list is meds. 

Ben’s thyroid med is considered “dispense as written”, which means that even though generics are available, his pediatric endocrinologist is concerned about variations in quality in generics, and insists that Ben get the original.  That means we pay out of pocket, because even with a pediatric specialist’s professional opinion that name brand is necessary, our insurance declines to pay.

We’ve had meds denied because they costs thousands of dollars a month,  and worked with doctors who slip us samples until generics become available, and even then the generic costs insurance over $1000 per month.  I am neither a scientist nor an economist, I am simply a parent who struggles to comprehend how 30 pills can cost over $1000.  Sadly,  this is only one of many meds with mind boggling price tags.

My hope is that with the Epi Pen outrage we will finally make headway in managing the cost of pharmaceuticals.  As I have indicated, we’re the lucky ones with comprehensive insurance coverage, I can only imagine the plight of those not so fortunate.  We cannot allow families to face the choice between making a house, utility, car or grocery payment to pay for meds, and we cannot put families in the position of going without meds in order to make the house payment. 

I don’t know solutions, I don’t understand all the ins and outs of the pricing of medications. I do know that years of research comes with a hefty price tag, and recognize that the cost must be passed on to the consumer, but there must be a solution, and we need to come together to make it happen. 

cancer · special needs parenting · Uncategorized

5 Things You Can Expect from Me this September

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I’m giving you fair warning.  September is coming, and September is Childhood Cancer Awareness Month.  That means that for the whole month of September, this blog will be focused on Childhood Cancer Awareness.  Here’s what you can expect:

  1. I will be hosting guest posts.  If you are impacted by childhood cancer in any way, you’re invited to write a guest post for the blog.  Just comment on this post and I will connect with you to facilitate your guest post.  You do not have to be a blogger or a writer, I’ll be happy to help with editing etc., just write your heart!
  2. I’ll be sharing our family’s story along with the guest posts.
  3. My ebook, “What Can I Do to Help” will be FREE on Kindle from September 3-7.  I’ll be reminding you to load it onto your Kindle.  It’s a simple guide for stepping into the gap when someone you know has a child diagnosed with cancer.
  4. I will be participating in Alex’s Million Mile March.  As a runner and a parent of a cancer survivor, this is a natural fit.  I will be logging miles toward the million mile goal, and raising money to fund childhood cancer research while I’m at it.  I’ll be giving you many chances to donate, but why wait, do it now.  In case you’re wondering where your money goes, here’s the link for that.
  5. I’m going to be getting under your skin if at all possible.  Childhood cancer isn’t rare, and it isn’t okay.  I have several friends whose children’s lives were stolen from them by cancer, I have many friends currently battling, and many wounded warriors, kids like Ben who fought valiantly, and paid dearly with lifelong effects of treatment.

This is your advanced notice. I want you to get involved.  If childhood cancer hasn’t effected you yet, count your blessings and come alongside those of us it has impacted, and if it has, I’m preaching to the choir.  There are dozens of ways you can help raise awareness, from “going gold” on your social media, to donating to Alex’s Million Mile March, to finding another reputable organization to share your donation, to visiting your local children’s hospital (only if you’re totally well), or seeing what they have on their wish lists.  Leave a comment and let me know how you’re getting involved!

Uncategorized

Tornado Warnings

On Saturday a tornado was within spitting distance of my house.  News reports state that there were no injuries or deaths from this tornado, which flabberghasts me, because in the morning the weather man suggested that the entire storm would most likely fall apart over the lake  (which is what us West Michiganders call Lake Michigan).  A series of tornadoes wasn’t even on their radar (forgive the pun) until it started happening.


As we tracked the EF0 to EF1 beast’s progress along a 50ish mile trail through Michigan I found myself totally pumped on one hand, and rather contemplative on the other.  The pumped side of me is fascinated by natural disasters.  This person imagines a different Lee without a family chasing tornadoes or being a vulcanologist.  This is the Lee who decided to become a paramedic.  Even when the telltale hook on the radar appeared to be right over our house I was reluctant to seek cover in the basement for fear of missing a glance at what was almost certainly my closest encounter with a tornado for the duration of my life.  I was reluctant, my husband refused, and I didn’t fuss about it. 

This is where the contemplation starts.  Neither my husband nor I are what you would call “risk averse”.  In fact, even though I’m a mostly soft spoken introvert, I embrace risk, and my husband, he must have more lives than a barnyard worth of cats because he’s cheated death half a dozen times just this past year.

And I’m okay with that.  Because, when he’s doing the things he loves, when he’s out in a canyon trying to stalk a moose just to get bamboozled by another bedded moose, and then stalked by a mountain lion, (true story, and it’s phenomenal) he is doing exactly what he was designed to do.  And he is completely alive. The man I fell in love with some 26ish years ago was driven by passion and heart. With our complex family it would be easy to demand that he grow out of it, settle down, and just go through life like everyone else, but that’s the exact opposite of my thinking. I send my husband out on adventures regularly, and likewise he does me, in order to live, to seize the day. If you could just be around my husband in these days leading up to his trip, camping and hunting in the canyon where he not only encountered moose and cougars, but also a mama bear and her cubs, you’d see why I do it. The world is his oyster right now, he’s in the zone, and there’s nothing else I’d rather see.

When is the last time you were completely alive?  Sincerely consider it, try to remember.  Chances are, if you’re a forty-something like us, it’s been awhile.  Do you remember what it feels like?  What would it take for you to be totally alive?  Do you even know?

When the tornado blasted through our county,I realized afresh how fickle life is. My husband had stepped outside to leave for work, unaware of anything but a little storm, and heard the sirens and turned on his radio.  My mom was in her car on the way to our house.  Anyone, anyone along that 50 mile stretch could have been struck down, whether they were just subsisting, going to and from a 9-5 with little joy in life, or someone out passionately chasing down the twister with their heart pounding and mind racing. 

We get some choices in life.  We don’t always get a second chance at our dream career (I’m not going back to school to be a vulcanologist any time soon), but we can at least try, to suck to marrow out of life.  To do something brings us back to life.  What is your something?

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Mama said there’d be days like this.

I’m testing out a few Goldfish Crackers for “lunch”, it was the only thing I could find, on my 4th trip around the kitchen, mind you, that looked manageable. 

It’s one of those days.  I’m getting over a nasty bug, I missed a goodbye party for one of my favorite people ever, a former teacher of both boys, and, of course, we have issues to troubleshoot with Ben’s MACE and Mitrofanoff.   I’m missing another goodbye party tonight and a couple of days with friends to boot. 

Sigh.

I know things could be worse, Lord knows how much worse they have been. And I realize the timing of my sickness could have been worse, like while Mike and Hannah were gone for a week.  I know many people are truly suffering.   I know how to look at the bright side and cheer myself up, but sometimes I just don’t want to. 


Do you ever just want to have a solo pity party, just amp up the blues and whine a bit?  That’s how I feel today. 

I know it’s ridiculous, I know I’m being silly, and yes, I’m wallowing.

No, I won’t remain here, and yes, I’ll get back to being my positive self, but today is a day to pout. 

And my temp just went back up. I might not be as “over” this bug as I thought. 

Uncategorized

To My Fellow Travelers with “Free Spirited Hair”

Every so often I decide to straighten my hair.  It goes like this.

Optimistic me:  “I’m tired of the half curl, half wave look, let’s go straight!”

Realistic Me:  “But that never goes well.”

OM:  “Yeah, but that new product will do the trick, I’m sure of it.”

RM:  “Sigh, okay.”

Ten minutes later:  “What the actual heck did I do?!”

RM:  “I knew it.”

It’s really not much better when I let it curl, it’s just that the chaos is more predictable, therefore almost always the lesser of the evils.

I see people whose hair is styled the same way every day, and I literally marvel.  If you have caught me staring at you, your controllable and predictable hair is the most likely reason.  You, my friend, blow my mind.

When I get up each day I make an offering to the hair gods in an ill fated attempt to appease them, and they smite me nearly every time.   But there’s that rare occasion when the planets align and my hair cascades into place in proper fashion, it is nothing short of glorious.  Lightly curled, not too voluminous, and moderately Boho, I feel stunning on the off day that my hair does cooperate.

Then there’s my tendency to play with my hair, whether out of boredom, tension or pondering, my hands find their way to my hair and then all bets are off.  If I were cognizant of my actions I would halt them, but it seems that I have no notion I’m even doing it.  As such, often, even on the best hair days I wind up looking like Einstein after a few hours. 


The ambivalence I have toward my hair is astounding.  One would think that with all it’s foibles I would wish it away or want to trade with Suzie McPerfectHair, but my hair is as I am.  A little bold, a little soft, a lot Bohemian, and a touch of heathen.  You see, my hair matches me, and even when I want to yank it all out, I still adore it.  

dog · Uncategorized

The Best Dog Ever

Sometimes when my sweet dog is face to face with me and I can see her teeth up close, I wonder what on earth humans were thinking when they decided to domesticate hunting animals with sharp teeth over an inch in length.  But her warm snuggles quickly remind me how wise they were!

I am a proud best friend and caretaker of a German Shorthaired Pointer (GSP).  Abbi is 5 years old, and a member of our family and companion to us all, but there’s little doubt that she is my dog.

This designation occurred largely because GSP’s are high energy dogs, so I, as a runner, took to running with her to channel her energy.  As with most high energy dogs, she’s obedient and happy when she can use up a good portion of her energy, and a bit frustrating when she doesn’t have a good outlet.  In order to truly enjoy running with Abbi, I also trained her when she was a pup.  There are plenty of philosophies about dog training, but we decided that it was ideal for us to train her, and though that sounds like an enormous undertaking, really, all it took was 5-10 minutes 2 or 3 times a day during her first year of life and regular obedience use in daily living.  She also hunts, which is my husband’s territory, so he works with her on the specifics of that type of training.  Abbi is fully capable of a prolonged sit-stay, and will heel during a walk or run without ever tugging the leash.  No, she doesn’t shake hands, she’s entertaining enough without being made to follow a silly command like that.

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It might seem like a lot to have a high energy dog with our family being fairly complex, but she gives back far more than she requires…even on the days that she digs up and eats the potatoes from my garden.

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And speaking of that, she’s a quirky little girl, which is really one of her best qualities.  From the time she got caught between the screen door and slider while pointing at a bee we knew she would add joy to our years.

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I know, I know there are those of you who think that rescue dogs are the only way to go. I hear you, I do.  But please understand that her breeders had us sign a contract saying that we would return her to them if circumstances arose that would prevent us from keeping her, as they do with all of the dogs they breed.  And we committed to her for life.  We have never put a dog into a rescue situation, and feel strongly that with the needs of our family, that doing our homework and finding a reputable breeder was the best way for us to go.  I do appreciate those who rescue dogs, but instead of vilifying people who own a dog for life, how about we agree that people who adopt dogs and then change their minds are the problem, not those who give excellent care for life to a cherished pet.