Uncategorized

This Dirty Game

Ah, fall. The crisp, cool air. Michigan apples and children in school (have I mentioned lately how thrilled I am that my kids are in school?!). And along with all of that comes hunting season. 

As the wife of an avid hunter, one might think I dread this season. 

One would be wrong. 

You see, the protracted absence of my husband grants me time with my other lover. 

It was just a matter of time. How can a woman spend so much time on her own without it happening eventually. He should have known.  He lead me right into it, really. 

This tempestuous affair of mine is with another who has been in my life as long as I can remember. Every time I get the itch, he scratches it for me. This love has been destined for my whole life. 

His name?  Solitude. 


On a run with “the other man”.

He’s there for me whenever I need him. He fills me up, we can spend hours and days together and never get bored. It’s a match made in heaven. 

I think my husband suspects something, a flirtation maybe, but I’m certain he’s clueless as to the extent of this romance.  

Alas, I cannot live without either of my darlings, so I walk the thin line between the two. I confess, when I’m with one I dream of the other, no matter which beau has my attention. My heart is torn, I cannot choose. 

I’ll continue this game, probably my whole married life.  This dirty, dirty game. 

cancer · Childhood Cancer Awareness Month · Uncategorized

Snapshots

I am pleased to introduce to you my friend, Erin.  Erin and I first “met” 10 years ago in an online discussion forum created for adoption triad members.  Erin happens to live near me, and we have since met. She is a person that I consider a dear friend, and I am so thankful for her presence in my life.  She is also a childhood cancer survivor.  Erin is my next guest blogger in my Childhood Cancer Awareness Month series of guest blogs.  These are her”snapshot” memories of cancer.

Erin at 5 3/4 years old. 



I was 5 ¾ (that ¾ being important to my 5-year-old self) when I was diagnosed with cancer. My memories are like snapshots throughout my treatment.

 

The snapshot of laying down in the backseat of the car and watching the lights go by as we drove the two hours to the hospital that would do my surgery and treatment.

 

The snapshot of wanting to be able to take my blanket back with me to surgery and not being allowed to have it.

 

The snapshot of waking in the hospital to a pastor praying over me, wondering if I had died.

 

The snapshot of an envelope full of hand drawn cards from my kindergarten class.

 

The snapshot of getting my stitches out in the hospital before being discharged and how painful it was.

 

The snapshot of looking down at my belly and seeing all these strips of white surrounded by the lingering yellow from the iodine.

 

The snapshot of my grandparents bringing my sisters to visit while we stayed with my aunt near the hospital to start treatments and my baby sister not wanting to go to my mom after being left with my grandparents during my hospital stay, remembering the look on my mom’s face.

 

The snapshot of going into my doctor’s office and the nurse having to do finger pokes on most of my fingers to get enough blood for counts.

 

The snapshot of when a different doctor gave me my chemo and burned the wall of vein leaving a chemical burn on my arm.

 

The snapshot of walking along the river in a park in our town and having to stop to throw up because I hated the anti-nausea suppository so much that I begged my mom not to use it.

 

The snapshot of having to sit inside at recess when I did go to school because I was too weak to play.

 

The snapshot of getting up really early and riding in the car with my dad to my clinic appointments.

 

The snapshot of getting to go to Chuck E Cheese post-chemo and playing skee ball (I still love skee ball).


Erin with her radiation techs celebrating her last radiation.  

All those snapshots of a small brown-haired, brown-eyed little girl with big glasses who fought cancer and won are what I carry with me now, 33 years later.

 

Uncategorized · writing

When a Never Uttered Prayer is Answered

I’m stuck in the middle.  When Ben is well and in school, I would love to work.  It minimizes the financial finagling and provides a meaningful outlet for me.  However, no matter how flexible or part-time the job is, when Ben is not well or not in school, I become a poor employee, failing to fulfill responsibilities optimally. I’ve been on leave from work since March, and with the start of school, I have been scouring work at home sites, school jobs, and even barista jobs (because coffee).  Nothing seems to fit.  I want to work, it’s just that history tells me how hard it is to make work work. 

This week, I got an offer to get paid to write. It’s an answered prayer.

Except that I didn’t pray for it.  In fact, I didn’t pray about it, around it or at all.

I’m sure that every person who has identified as Christian is familiar with dry spells, my dry spell is 2+years and counting, and it’s like wandering in circles in Death Valley.

The only time I pray is when someone asks and I tell them I will, thereby fulfilling a promise.  Otherwise, Sahara.

Back when I prayed pretty much all the time, my prayers were rarely for things.  Rather, I would pray for wisdom, clarity, direction, the fruits of the spirit, etc., and I would pray that over anyone whom I covered with prayer.  So, if I had been praying recently, my prayers for myself would have been for provision, discernment about finding work, discipline with money in order to stretch it further, and to know the right direction when I see it.

With this offer, out of the blue, unsolicited, all of the above were provided and more.  One might say, miraculously.  If I had been praying, I would plant my answered prayer flag firm in the ground and declare this turn of events an official answer to prayer.

So what do I do now?

Sincerely?  How do I process this?

I have been unfaithful, I haven’t prayed, yet an ideal turn of events has come my way.  As a formerly fierce and steadfast pray-er, I have no idea what to make of this.  I’m stymied.

And, so help me, if so much as a single person throws out a “God works in mysterious ways”, or some such, I will come unglued.  The reason I am in this place is because my questions got infinitely larger than I could wrap my mind around, even with intense Bible study and excellent teaching at church.  My mind failed to grapple any further with the mysteries of life, and I found my mental bank account overdrawn, went completely bankrupt, and here I am.  I’m still trying to get forward momentum, to find a bit of moisture to prime the pump that for so long kept me in water so faithfully, but here in Death Valley, the moisture simply isn’t to be had.  Isn’t that ironic, the one thing required to get me out of this desert is the one thing completely lacking here. 

So I grapple with this sincere, honest, gut wrenching question of how can I have such glorious answer to a prayer never uttered?

 

cancer · Childhood Cancer Awareness Month · parenting · running · special needs parenting · Uncategorized

Down Syndrome and Leukemia

When Alex was two years old, his pediatrician sat me down at a well child visit and outlined the symptoms of leukemia.  Why?  Because 2-3% of children with Down syndrome develop leukemia, and she wanted to be sure to catch it early if it occurred.

Though that was over 12 years ago, the memory still haunts me.

When Ben was diagnosed, we needed no reminders of the increased likelihood of leukemia in kids with Down syndrome.

You know what.  I’m struggling with this.  The words won’t come, the emotions are carefully guarded in a high tower with dragons and moats and drawbridges protecting them.  So here we go, stuffs about to get real.

Ben came home supposedly healthy.  It’s not that we insisted upon a healthy baby, but we were certainly pleased when the child with whom we were placed had no apparent health problems, because, hey, a healthy baby is a good thing.  That obviously went south pretty damn fast with hearing impairment, thyroid failure and Hirschsprung’s disease all thrown into his first year home with us.  But yeah, that’s okay, life comes with no guarantees.

Of course not, because once we got the congenital nonsense taken care of along came Cyclic Vomiting.  We had a good year ONE GOOD YEAR (during which my mother in law died and my husband and I both had major surgery), and poor Ben was body slammed with leukemia.

I literally don’t have words.

I wrote a whole book about Ben’s life so far.  I can document the crap out of all that he’s been through, but the emotions, what it actually was, there are no words.  NONE.

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The English language, rich and beautiful as it is, completely fails me when it comes to that day.

Moment by moment, I remember it so clearly, yet it’s a clustered mess of horror that I fail to untangle.

And every year almost 16,000 families live that day.

And some live an even worse day, they day their child succumbs to cancer.

By numbers it’s still over 10% of children diagnosed with cancer who die of it.  That’s almost 2000 children a year.  Numbers don’t tell the story though.  Not even close.

I wish, I wish I had some way to express to you the hell of that day.  The hell that extended for over three years of treatment.  The hell that cost Ben his ability to empty his bladder on demand, that cost him IQ points.  During treatment Ben over seven months of his life on steroids.  Steroids make Ben psychotic.  Raging, out of control, sleepless, psychotic.  In fact, after his most recent surgery, when he mistakenly got a dose, the anesthesiologist considered his reaction so severe that she recommended listing steroids as an allergy because her professional opinion was that one dose severely jeopardized his health.  He had over 200 doses during cancer treatment.

There is more, so much more.  My child, my baby, has endured far more than most people do in a lifetime, and he’s only ten.

Childhood cancer is hideous, vulgar, horrifying.  Don’t ever let a sweet photograph of a smiling bald child fool you, they are enduring hell, nothing less.

So far in September, I have walked/run 46 miles for Alex’s Million Mile March.  Would you please consider donating to this event, and help me work toward ending childhood cancer hell?

cancer · Childhood Cancer Awareness Month · Uncategorized

I Thought My Nightmare Was Over

This guest post for Childhood Cancer Awareness Month was written by my friend Stephanie (name changed for privacy).  She addresses an issue that impacts many families, post traumatic stress.  The stress of childhood cancer impacts not only the child, but the parents and siblings as well.

On January 14, 2014 my son would take his last pill of chemotherapy. We had just finished up over 3 years of life with leukemia. (Insert massive applause!) I was so excited! No more grinding pills and forcing meds down my son’s throat. No more long days at clinic waiting for counts and getting IV chemo. Gone were the days of rushing to the emergency room with fevers. And the number one thing that I could not wait to kick to the curb was the many mood swings my son had as a reaction to the meds. Cancer was going to be a thing of the past!

Wrong.

A month later, once his behavior and mood swings were supposed to be getting better, Zack turned into a monster. I could not control his outbursts. He was lashing out at everybody. Constantly.

I talked to the doctor, the nurses, and the social worker. The responses I got were: “Chemo lasts in your systems for up to 6 months. Maybe he still isn’t feeling well?” “Maybe he is finally feeling better and has a ton of energy he needs to burn off?”

This behavior continued longer than 6 months. I was beside myself. And angry. So angry. I had looked forward to this time of cancer freedom for so long and my dreams were shattered! And no one knew why?! Why? Why was my son uncontrollable. Why was he hurting everybody? Why would he be so nice one minute and then just blow up at everybody in the room?! I thought, “Give me chemo back! I liked that boy better!”

School turned into a battle. HIs teacher was so patient and kind. And my son was not. He spent many days in the principal’s office. A good report for the day had me throwing a party! Literally! A party! Sweets and presents! I did everything I could for this child to motivate good behavior. Nothing was working.

In the midst of that, my oldest daughter started acting out at school. Not listening to the teacher. Getting up in class and just walking out. And at home, if I was worked up because my son was being bad, she would go into “fix-it” mode.

Life was chaos! Life after chemotherapy sucked. I just wanted to quit. Where was my perfect life after having survived hell?!

After months of not knowing what to do, I was sharing my co-worker how I just dreaded sending my kids to school. That every night I would pray for wisdom and my heart was broken that everything was such a struggle. After listening for a while, she recommended “Winning at Home” for my kids. Winning at Home is a group of therapists for kids and adults who have been through some sort of trauma. I sat back for a second and a light bulb went off.

Therapy? THERAPY!!!!!!!

Not once I had even thought that my kids would need this. Cancer was done. We made it. We could move forward. We were ok. Right? Nope, we weren’t! Life was horrible! I needed a way to control my son, help my daughter, and work through my own trauma!

I made an appointment for my son first. I was so nervous. Maybe I was crazy. Maybe this is just who my kid was. Maybe I was just a bad mom. Maybe it was all in my head!

Little did I know how much Miss Emilie would be a healing balm to my soul. She listened. Researched. Talked with my son and I. She gently suggested that maybe Ike had PTSD. Post Traumatic Stress Disorder.

Hearing those words

Hearing those words sent me reeling into memories like a flash flood. The details of why this made sense are so many. The words “medical trauma in children” pretty much sums up the details. Why had this never crossed my mind?

But it makes sense, doesn’t it?! It is not just adults, people! The therapist and I began making connections that when my son would feel trapped, emotionally or physically, he would lash out. Fight or flight. *deep breath* The awareness that he was suffering and has to work through medical trauma helped me so much. And I have a plan to help him.

And my daughter? Anxiety.

Duh.

The many random days Mom would be crying. Waking up and there was a baby sitter because Ike was in the hospital again. She had no control over anything! PTSD in kids is such a new thing. Even the therapist is doing so much research because how medical traumas, specifically cancer, is affecting children is such a foreign topic!

And how does chemo effect that part of the brain? What repressed memories cause responses that children are not even aware of? Is this behavior something that may be a side effect from all the drugs? Are there things we can do even during treatment to prepare children to handle the emotional toll it takes? As adults, we know words like “stress” and “over-whelmed”. A two year old does not have any clue what these words mean! Let alone communicate these emotions to an adult!

These emotions and thoughts are something my son needs to work on. His behavior has a real root cause and his therapist and I are on a mission to help him. To teach him there is a better way. That anger and hitting are not ok. He is safe. He is loved. He is not a bad boy. But bad things did happen to him. And we understand why he is upset. We get it.

My daughter is also in therapy now. She is learning how to deal with anxiety. I see a therapist for parenting my children who have walked through a trauma. The journey is just beginning for us. But I am hopeful that we will be better in the end. I want my story to be a light to other parents to let them know that they are not alone. That they are not bad parents. That something bad happened to them and there are places to get help. We got this parents! We can do hard things and live to tell about it!

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dog · parenting · running · special needs parenting · Uncategorized · writing

Complete, Utter, Total, Bliss Begins Today 

The kids were all gone by 7 am today. I have gotten an obscene amount of work done, uninterrupted, and am lounging in the backyard with the new addition to our family, Meg. 


I have a solitude playlist going, and I’m living the good life!

At least until Ben’s doctor appointment this afternoon. Yeah, lucky us. The glamour of medically complex parenting just cannot be overstated. 

Otherwise you will find me winterizing my garden, running, getting my house back together after a summer of neglect, writing, or more likely, doting on the sweetest dachshund ever to set paws on this earth. 

Regardless, a weight has been removed. The constancy of parenting my boys has eased, and I feel like a helium balloon with just enough ballast to keep me from soaring into the stratosphere.  

Yesterday Ben locked me out of the house. I stood on the deck trying to show him through the sliding glass door how to push down the lever he had just flipped up. It took several minutes.  I almost cried in frustration, even though I could have summoned Hannah or gone through the garage. Not because I was stuck, but because the situation was entirely symbolic of our lives. The ridiculousness. The patience required. The task that should be so easy, but is almost unmanageable. But we didn’t give up. We stuck it out. Together. And we did it. We prevailed. We always do. 

Nine months people.  I can relax for 9 months. 

cancer · Childhood Cancer Awareness Month · parenting · running · special needs parenting

How Becoming a Runner forced me into Self Care

This morning I needed a run.  My body and mind were craving even a few miles after 2 days off.  I texted Hannah  (have I mentioned lately how much I love technology), and asked if she would babysit so I could get a few miles in.

Once upon a time that was almost impossible for me to do.

I’m that mom.  If you aren’t one you know one.  I bust my tail to ensure that everyone else gets their needs met, and wind up with my needs in last place on the docket more often than not.

Believe it or not, cancer is what changed that.

When your child has needs that so completely exceed what you can provide you are forced to enlist help.  For me, running was the catalyst for that.

I started running in the first year of Ben’s cancer treatment after letting my needs slide down into an abyss. Thankfully my husband noticed and prompted me to change.

That change was more than a positive impact, it was transformative.   Not only did running improve my mood, coping and sleep, it was addictive. I swear by endocannabinoids for quality of life (yes, the human body produces cannabinoids upon exertion, so the runner’s high is a true high, similar to pot). 

Not only that, but the literal addiction was enough for me to advocate for myself, and ask for help so I could get a run in.  Nothing else had pushed me over that line.  So I learned to ask for help, because my craving for my runner’s high was the one thing I couldn’t deny myself.

Over time I have learned to apply that to other areas of my life.  Once I learned to ask and got positive results  (I’m pretty sure my family likes me better after a run), I was able to apply the ability to other areas of life.   It’s long overdue.