parenting · special needs parenting

How Long Will I Need to Pray For Patience?

This morning when I walked out of my bedroom Ben met me at the door with a game in his hands and his patented “Wanna pway?”

There is not a game in the world that I wanna pway before the sun is well up into the sky and a hearty dose of caffeine has enhanced my neurological synapses to a semi-normal pace.

Even so, it was well before 7 am that I acquiesed and found myself here:

I let him do his thing without my usual insistence that he play by the actual rules and about 6 moves later he performed his adorable, ecstatic happy dance after “winning” the game, and I was off the hook. 

And feeling rotten. 


I’m not patient enough to enjoy a Saturday morning with my kids. 

I just want coffee and quiet and personal space. 

I want to love this. To be Molly Mother with a soft voice and patience galore. I want to delight in hours of gameplay and teaching and engagement. Instead I alternate between sucking it up and being ornery with my kids. Yep, I’m super mom here. 

After years of praying for patience and getting opportunities to develop patience instead of some magical skills, I changed tactics and went on patience prayer strike, in hopes that if I stopped asking for patience that God might stop giving me those teachable moments. 

My theory proved grossly wrong. 

Here I am, 43 years old, almost 18 years into this parenting gig and still cringing at my own failings. I kind of hoped I’d be on cruise control by this stage of life, that it wouldn’t take quite so much conscious effort to get through a morning, that maybe I would have achieved some kind of guru status that made parenting feel natural and effortless. 

Yeah, no. 

Instead I’m just trying to justify hiding in the bathroom, playing Candy Crush for 10 minutes as normal. 

At least I’m an awesome dog mom. 

parenting · special needs parenting

I am Asking You To Stand With Us In Solidarity

 

I have diligently tried to avoid political commentary.  I have plenty to fill my plate with caring for my children, but I simply cannot be quiet today.

Three is a significant number in many types of number studies, including Biblical.  A trifecta is considered a “perfect bet”.

Friends, we have a trifecta against my family.  I quietly called my Senators when Betsy DeVos demurred about IDEA, the law that protects my boys, and every child with a 504 or IEP in the United States.  I wrote an article about my concern about the ACA repeal without replacement and my concerns about how that will affect my family and many others with children who have complex medical needs.  It was conciliatory in tone, intended to generate conversation rather than make a bold statement.

Today I am not conciliatory.

I am sick, literally sick, this morning as I see the third strike against my family.  Trump’s team has disabled the disabilities portion of the White House website.

I can no  longer watch, I can no longer just make phone calls to my Congressional leaders to express my concern.  I can no longer use a conciliatory tone.

I am a fierce advocate for my children.  I don’t make a habit of making mountains out of molehills, rather, I use a calm and deliberate demeanor in order to give weight to my words.  I use persuasion and data to make my point rather than raising my voice to be heard above the crowd.  Today my tone remains measured, but my hands shake as I type.

Every single success I have enjoyed while advocating for my children has been based upon the foundation that has been built-in this country that says that people with disabilities are valuable members of society.  They enjoy legal protection which empowers them to succeed in school and work, and become the most productive people they can be.  It’s not too many years ago that newborns with Down syndrome were sent away to institutions and given zero chance of becoming a member of society.  It was parents that took the steps to make the changes that have given my children the opportunities they have to be educated and given medical care without exorbitant expense to their families.

I am not prepared to lose those opportunities.

I am going to fight, tooth and nail to keep them.

And I’m asking you to join me.

If you have ever said a prayer for Ben while he was sick.

If you have ever “liked” a photo of one of my children.

If their antics have made you smile.

If you want to see them continue to succeed and grow.

If you want Ben to continue to get healthcare that has saved his life a few times over.

I ask you please, stand by me, stand by my children, my family.  Contact your Senator, contact your representative.  Whether you’re Democrat, Republican, Independent, Green, Libertarian, or lean in any other direction, I ask for your solidarity on this issue.

Because right now I’m terrified for the future of my family. 

 

 

cancer · parenting · special needs parenting

My Complete Thanks To The Many, Fabulous Nurses

Last week I took Ben to Nationwide Children’s Hospital.  He had a tube inserted into his nose and down into his stomach and small intestine to measure how his stomach and small intestine worked.  tube inserted into his nose and down into his stomach and small intestine to measure how his stomach and small intestine worked.    The test sucked.  What didn’t suck were the nurses.

In Ben’s nearly 11 years, he has needed countless medical interventions, but one common denominator exists among them.  Fabulous Nurses.

From floor nurses to clinic nurses to surgical nurses and procedure nurses to office nurses and home health nurses, Ben has been cared for by some of the best.

My complete thanks goes out to them.  They are indeed some of the most remarkable people I have had the privilege of knowing.  They have been teachers, showing me how to give Ben chemotherapy at home, proper post operative care, and numerous tips and tricks to make our lives easier.  They have been confidants, listening to our hopes and fears.  They have given empathy, hope, love, humor, and practical help.

Nurses are the first line of care, the go-between advocating for the patient with the doctor, and the eyes that see the moment by moment care that needs to take place.  They have physical, mental, and emotional stamina, and multitasking superpowers.

Nurses are the glue that holds the healthcare environment together, they are the foundation upon which medical conglomerates are built.

My child’s life has been greatly enhanced by the nurses that have cared for him, body, mind, and spirit, for his whole life.  To them I give my gratitude and love.

dog · running

The Top 10 Reasons I Absolutely Love Being a Runner Girl

“Runner Girl” is a title I wear with pride.  I have nothing but love and respect for the phenomenal women with whom I share the name.  I love being a runner girl for many reasons, but here are the top 10.

  1. This feels incredible.  There is nothing like the feeling of accomplishment that comes with crossing the finish line of a race.
    Crossing the finish line of a half marathon.
    Crossing the finish line of a half marathon.

     

  2. I love to eat, and I do mean love.                                                                    pexels-photo-99606
  3. My 72-year-old mom is a long-time runner girl, and she can still run, jump, and play monster tag with her grandkids and great grandkids, and still loves going for hikes in the mountains!  I want to be like my mom!

    My mom, ziplinging in Vermont at the age of 70.
    My mom, ziplining in Vermont at the age of 70.
  4. I have the best running buddy ever!
    Abbi, my German Shorthaired Pointer loves to run with me.
    Abbi, my German Shorthaired Pointer loves to run with me.

     

  5. I’m a glutton for punishment.
    Running in Michigan in the winter means some pretty grueling conditions.
    Running in Michigan in the winter means some pretty grueling conditions.

     

  6. I want to be a healthy role model for my kids.

    Out for a run with my son, Alex.
    Out for a run with my son, Alex.
  7. I’m a happier, more productive wife and mother when I take the time to workout.
    Me "hanging" with my boys.
    Me “hanging” with my boys.

     

  8. I love me some endocannabinoids!
  9. In the event of a zombie apocalypse, running is a major survival skill!                           night-camp-vhs-zomibie-8958
  10. It’s good for my marriage.  Not only is running great self care, and good physical fitness, it’s a way for my husband to tangibly show me he cares by taking over the house and kids for an hour or two so I can get my run in.  He knows that my primary love language is sending me out for a run!

Being a runner girl is one of the greatest aspects of my life.   Taking up the sport has been a game changer for me in every way.  I am thankful for my mother as a role model, and thankful for the chance to be a role model for my kids, as well as keep myself healthy and strong, mentally, physically, spiritually and relationally.

parenting · special needs parenting

I Just Remembered How to Manage Childhood Insomnia 


Last night I had a couple of hours of insomnia. As an adult with a toolbox full of coping mechanisms and a million thoughts to distract me, I stayed in bed and tried not to wake Mike, while allowing my mind to wander. 

As it wandered I thought of Ben.  Ben has almost 11 years of insomnia under his belt. No matter what we do, he doesn’t sleep well, and believe me, we’ve tried everything under the sun. But what I was thinking about was not his insomnia, per se, but the idea of expecting a child to cope with chronic insomnia by staying in bed. 

It would be impressive for a neurotypical child to have the skills to cope with chronic insomnia without summoning parents, but for a child with neurological differences, how could I ever think he would be able to stay in bed. 

I know my child, he has traumatic stress, anxiety (primarily separation anxiety), little impulse control, and doesn’t understand negative reinforcement, rather, he thrives on positive reinforcement. 

Putting that all together, I believe it’s completely impossible for him to stay in bed when he can’t sleep. 

So now what?  

I go back to the lovely, late Dr Karyn Purvis for an answer I saw long ago, though I often need reminded. 

This video, and really all that I have ever seen of her makes me long to crawl up into Dr Purvis’ lap for comfort and warmth. Likewise, I desire to be that person for Ben, knowing how desperately he needs that comfort and warmth. 

And I resolve, again, to approach his insomnia from a place of acceptance. 

special needs parenting

The Very Best Way Ever to Distract a Child

Let me qualify this post by saying this was not originally my idea.  A few years ago when Ben had his first MACE/Mitrofanoff surgery, we had a behavioral consultant who gave us this idea.  Thanks Barb, it’s been a life saver!

Since that time, every time Ben has a hospitalization or surgery, or in this case, a trip to a major children’s hospital for extensive testing, for a few weeks ahead of the event, I peruse the aisles of my local Target, Meijer, and Walgreens looking for cheapo toys in the clearance or dollar section.  I stock up on toys at less than $5 each, and wrap them up.



I usually include one bigger toy, which generally is for medical play, which is a favorite of Ben’s, this time it’s the Doc McStuffins Care Cart to add to his collection of doctor kit, lab coat and Tubie Friend  and VOILA!  We have a bag full of distractions!

We add to the fun by wrapping them all up in wrapping paper, because wrapping paper is fun and it takes longer, and when you’re spending the whole day doing medical tests, every minute of distraction is a gold mine.  Also, Ben loves birthdays, so I’m sure that we will spend much of the day singing “Happy Birthday”, because quite frankly, whatever makes him happy is what’s on the docket for the day.

Honestly, it’s therapeutic for me as well.  Ben can’t really anticipate his upcoming surgeries or procedures, but I sure can!  It helps me to cope when I have something to do to help him through it, so when I get anxious, I can pop into a store and grab a few things for him and know that we will both feel better!

parenting · special needs parenting

This Has to Be One of the Best Parts of Parenting

I often feel as if I was custom-made for special needs parenting.  I have to admit that with Ben I have many times been entirely out of my league, but between my husband and me and our small but mighty cadre of wise counsel, we somehow manage to figure things out, though I must confess that we all too often take the scenic route to get there.

Every great once in a while, though, we get to this oasis.  Although we often see a mirage and hope for oasis, these oasis are few and far between.  Arriving there is my absolute favorite.

In the oasis, we get to make use of everything we have learned along the way, on those dry and dreary days in the desert with no end in sight.  In the oasis, our primary responsiblity is seeing where our child is going and giving them momentum.

And that’s what the best parts of parenting are all about.

Today, right now, we are in an oasis.  In this oasis we use fun and silliness to give positive feedback and reinforce good things.  Instead of dwelling for long days in problem solving mode, the focus is on success and building upon it.  The current challenge is to give impetus to what is going well rather than correct what is going poorly.

I don’t know how long we will be in an oasis.  It could implode before I click “publish” for all I know.  But here we are, in my the best part of parenting, and I’m relishing it for as long as I can.

I just hope this one lasts…