I almost didn't write this story.

I can name several reasons not to...

The first reason would be because my Prince may hate it.  He will likely get caught in the details I deem unimportant.  He will probably be embarrassed and want me to NOT say parts of the story.

But, some day, in his future...he needs to know.

So I'm writing it.

At the beginning of this school year, his 7th grade year, we told him he had to pick a fall sport.

See, he's a lover of the couch.  He likes video games and TV and movies.  He's an amazing student and a talented communicator.  But he is not an outside-loving kid.

I want him to be active and on a team.  I am convinced teams and shared purpose with teammates teach skills we cannot otherwise learn.

His options were football, cross country, or girls tennis.

He chose cross country.

In 7th grade, being on the cross country team means daily practice and weekly meets.

It's awesomely active.

It's an entire sport of running...so it's hard.

But it's doable.

At his level, the race is 1 mile.

So, here's the part he won't like me writing.

Running isn't easy for him.  And he doesn't particularly love to run.

Some 7th grade boys are really fast.

My Prince finished his first race in 11:21.  Not dead last.  But very close.

His time isn't the point of my story.

The point of my story is this:

As the gun went off to start the very first race of the season, my eyes (against all control and choice) filled with tears.

I tried to cough it away.

I mentally tried to count days until my next period (I know, lame) wondering if maybe it was hormones.  I was baffled.  I was crying.  Against my will.  At a middle school cross country meet.

But the next week, at the next meet, I did it again.

And again.

It's a real thing for me.

I cannot go to a cross country meet and hold back my emotion.

I mostly feel stupid.  I wear sunglasses and run to my car as soon as it's over.

You may have stopped reading this story 4 sentences ago.  But if you didn't, if you are wondering what could possibly be so emotional about a pack of middle school kids running around a field, I will tell you.

This group of kiddos, all dressed in identical uniforms...ALL of them...line up at the starting line.  The 5:55 minute finishers and the 11:21 minute finishers line up shoulder to shoulder.  There is not an A team and a B team.  There is no bench.  There is no "put me in coach, I'm ready!".  **Before anyone gets all pissy about my comparisons to other sports, don't.  I love basketball and football.  I love the kids who choose those sports.  I don't think the whole football team should abandon football to join the cross country team.  I simply have an emotional reaction to this sport.**  When the race is about to begin, the entire team lines up and waits for the gun to fire.  As the shot rings out, every single kiddo runs the same race, has the same job, struggles with the same hills and turns.  They suffer together, yet they are each running their own race.

And then my eyes get cloudy and tears threaten to spill over.

Every single meet I watch the coach, a young man not yet a father himself, take off.  He runs to various points along the race to encourage his athletes.  He pushes each one to keep moving forward, to fight for the next step, to struggle for his/her personal best...but he is beside them...running with them.

Today, just like every meet before, I stood beside the course and waited to see my brave runner go past.  I watched the first finishers go past with such intense speed.  I watched the next wave of kids go by, all in a rotation of jockeying for best times as they chase each other towards the finish line.  And then a break.  There is a short break before I see my Prince fighting his way to the end of the race.  Today as I looked out over the field, he suddenly came into view from around a turn, and right there, just outside the designated course lane, but beside him still, was his coach - running with him, pushing him, keeping him going.  And I lost it.
My Prince may not understand the significance of those few moments until many, many years from now.  But I was overwhelmed.  For today, if only for a few minutes, an adult shined his total attention on my Prince for no other reason than to. help. him. finish. well.  If only we always had the gift of a coach running beside us as we took hard steps when we weren't at all sure we could.

And the story isn't finished, yet.

There is more.

The last 100 meters of the race is lined on both sides with a sea of cheering fans.

Every single athlete...the one who finishes first, the ones who finish all on top of each other in a pack, the one who finishes very last...is cheered across the finish line.

And then it's over.

Just like that.

But it inspires so much in me.

I saw this shirt the other day.

It's literally a window into my soul.

I didn't buy it, but I probably should have.

I don't think it applies to *other* people.  I almost never feel this way when people talk to me.

But, it certainly applies to me talking about myself.

I'm in a less talking (about all the stuff) cycle.

As a kid I didn't talk about myself a ton.  My family probably disagrees.  But to the general population, my friends, etc. I didn't over-share.

I distinctly remember my mom giving me this advice as I left home for college my freshman year:  "You are going to have to open up and let people in."  I'm not sure what she saw in me.  I know I was a big talker at home with my family.  But it was spot on.  I stood guarded - always.

That shifted at some point along my journey.

I wanted to talk and share and process and explain.  I suspect it happened at around the same time things got hard.  Gut-wrenching hard.

But I think I've settled back in to my default.

I don't want to talk.

I am finding it harder and harder to tell the same story to the same people.  My people, they've all done their time with me.  They've listened.  I've talked.  But my story is frustratingly stuck.  And I'm done talking about it.

I'll tell funny stories about the life I call mine.  We've got a lot of funny here on a daily basis.  And I love to answer questions like: "tell me about your adoption process" or "how do you find the best doctor for Crohn's disease" or "Who do you call when you need to ask autism questions."

But the feeling questions...the "how are you doing?" and "what's going on?"...

Those conversation are on hold.

Therapy taught me not to overreact to my emotions.  To ask myself questions.  To be present and curious.

It's good for now.

Quiet more.

Listening more.

Learning more.

It's so true.

I do have a dream.  Actually, dreams.  

Though, that title belongs to another speech.

So I'm developing a list of sorts, and the title is going to have to be more like:  Wouldn't it be awesome...?

It's things like this:

~Wouldn't it be awesome if my 8 week summer class - Pathophysiology - text book wasn't 1081 pages long.

or

~Wouldn't it be awesome if the way to prevent Zika was as simple as NPR suggested...which included knowing the enemy and recognizing Zika carrying mosquitos by the white stripe on their legs.

or

~Wouldn't it be awesome if crowdsourcing was as easy as I want it to be.  Meaning, if my great ideas could somehow become everyone's great ideas and spread!  By great, I clearly mean great...for me.  But I'll be honest, I try to be thoughtful about my great being universally great.  Currently, I am working to advocate for my Princess.  She is at a pivitol age.  I have great ideas and limited resources.  You can read about it in a blog coming to my corners soon.

~Wouldn't it be awesome if my Princess didn't suddenly get a boyfriend and freak me the heck out.

~Wouldn't it be awesome if I had thought to add a few more items to my cart at Walgreens.  Buying 3 boxes of tampons and 2 rolls of duck tape made me look extremely suspicious.

~Wouldn't it be awesome if Speech/Debate and Forensics were offered at our local middle school.  Because let's be honest...middle school boys are spending 20 hours a day eating or asking for food and the rest of the time debating.  If we cannot beat 'em...we should figure out a way for them to harness their super powers.

~When the Princess says:

"I'm really sorry-but that egg sac I have in my room hatched and there are a LOT of spiderlings ...but they will stay on my lamp...so don't worry." Wouldn't it be awesome if:

1. I didn't actually need to worry. 
2. I could actually believe her about the "staying on the lamp" part 
3. I did not underestimate what "a LOT" actually meant. 
4. I didn't have to be the one to go straight to her room, grab the lamp (along with hundreds of spiderlings) and run outside. 
5. I didn't dwell on the fact that she had an egg sac in her room and I didn't know. 

~Wouldn't it be awesome if the dead baby bird in my garage would bury itself.  The Princess isn't one for checking things off her "to-do" list.  

~Wouldn't it be awesome if all 9th grade students wrote "my parents were being stupid" on the check-in log at high school.  The Princess made her feelings very clear for all to see when she was late to school one day.

~Wouldn't it be awesome if all my dreams came true?  

Oh wait...

Once upon a time, I dreamed about growing up.

Check

I dreamed about a big wedding, in a white dress, with the man of my dreams.

Check, check, and check.

I dreamed about a perfect space to live.

Check.

I dreamed about being a momma.

Check, check, and check.

I dreamed about being the perfect mom raising perfect kids.

Check.  

**Yes, I just left out 1 check.  I haven't decided who the problem is, yet.

Every year we have the big town celebration.

I've written about it before, here.

This year was a little different.

The Princess brought her boyfriend.

B.O.Y.F.R.I.E.N.D.

In all reality, she is delightful when he is around.  She is calm.  She is more aware of herself.  She is happy.  We are happy to have him join our weekends!

I loved the carnival as a kid.  Now, I can hardly go without feeling a little nauseated.

Seems I am not the only one.

We loaded the 3 royal kiddos up plus one boyfriend and headed to the carnival.  Armed with tickets, we sent the older kids off to spin, flip, and twist their way into carnival happiness.

I followed the little Knight around with my camera.

However, I'll tell ya...at one point we tried to get on a ride that was suddenly closed down and a couple of the carnival employees came running with big buckets of water.  They started throwing the water on the ride deck with instructions to return in "about 30 minutes because someone puked."

This is called foreshadowing for the rest of my story.

The little Knight picked a different ride, but I couldn't shake the visual of those big buckets of water.

I started looking for the Princess.

She was nowhere.

When I did finally find them (Princess and boyfriend), she was mad as a hornet.

Apparently she had been texting me for help and I missed the texts.  Boyfriend was the vomiter.  His aim protected my girl - for which I will always be grateful.  His clothes didn't stand a chance.

But here's the deal.  He lives 20 miles away.  He needed a shower and a change of clothes.  And making him walk seemed mean.

Full disclosure, I did stand and stare at him for longer than I should have.  I was considering all of my options and realized I had only one.

I loaded him in my car and drove him home.  20 miles.  In a car.  With a adult-sized boy who was covered in his own vomit.

This drive required a verbal filter.

I have a well developed verbal filter.

The Princess does not.

She moaned and writhed and threatened to vomit the entire 20 miles.  We pulled over once so she could deep breath and walk around the car.

Boyfriend was a doll the entire ride.  He checked on the Princess.  He didn't complain.

As we dropped him off, we sent him inside with lots of well wishes and the promise that next weekend...movies only.

P.S.  While I drove boyfriend home, I left hubby, the Prince and little Knight at the carnival to continue on with all the fun.  An adult friend of ours rode a few rides with the Prince.  When I called hubby to tell him we were almost back to pick them up from the carnival, he said..."You are not going to believe what happened."  That friend riding with the Prince...needed the bucket brigade to clean up after her ride as well.  At the end of the day, the carnival employees were happy to see us leave.

Yesterday my little Knight asked to go for a bike ride.  He has been practicing in front of our house - still with training wheels and a little teeny tiny red bike.  His speed increased from adult walking speed to "adult tearing after him down a busy road in regular clothes, converse and a non-supportive-for-running bra" speed in one walk.  It was beyond fun!

I am existing in this sweet spot of what I believe will be the end of one kind of health care experience and the beginning of another.  Not just for me.  And not just for one place.  I am talking about a sweeping change in health care to partner with families.

The trending vocabulary includes: collaboration and co-production.  I am certainly still wrapping my head around the definition as it is defined by the thought leaders in this movement.

But I am on the ground.  Right now.  Today.  Doing the actual work.

I am a warrior mom.  I am a persistent advocate.  I am bold enough to ask questions.  I am thoughtful enough to understand my role.  I am old enough to push for new definitions.  I am young enough to stay the course.

I am certain that the best sort of health care is the sort that comes from all the experts working together.  In my definition, the patient and family members are on the expert list.

Recently I had the opportunity to be included on an audio program.

WIHI: The New World of Co-producing Health and Health Care

While this was one of the most exciting public speaking opportunities I have had, it was the same story I have been telling - over and over - as often as I can since 2012, when my journey as a parent partner to a medical quality improvement team began.

What strikes me about the title for the audio program is the part that says: "The New World"

It could also say, "Unheard of" or "People just don't do this" or "Fantasy to reality" because this is how it's presented.

It's so foreign to so many people.

Yet, for me and the team I work with...it's sincerely a natural experience.

We are a team.

We have created community.

We communicate.  Sometimes we communicate poorly and sometimes we nail it.  But we keep doing it.

Here's the transcript from my talk.  Included in parentheses are additional thoughts I had to eliminate from the actual talk for the sake of time.  Yet, these were included in my first draft.

I am very honored to be here today. 

I have to be intentional about giving this middle child space on this blog.

It's so cliche about being a forgotten middle.

He would vehemently disagree with me, but he is certainly not forgotten.

He isn't quite as theatrical as The Princess...although, he's putting in some work to that end.

He isn't little and cuddly anymore - so he feels usurped by The Little Knight.

But the reality is, he has the capability of being pretty darn easy - if he would embrace that truth about his life and character he would recognize how much his dad and I long for "easy."

The other big truth is we spend much more one-on-one time with our Prince than we do with either of his siblings.  We have logged hours upon hours in the car, at appointments, and focused attention surrounding the process of a chronic disease diagnosis.

But still, there is something about being the middle kid.

He was the middle kid long before his brother was born.  He just experiences his world as a middle kid.  He's older than his years.  He craves attention (who doesn't).  He wants to remain private, sort of (which is another big reason he is not a frequent topic of blog posts).  He likes the idea of fair and equal...and he keeps tabs.  

I found this recently in an article I read on-line:

Middle children tend to feel that they are unseen, so they may suffer from low self-esteem. Even if they are capable of doing something, they may constantly ask for your help in order to get your attention. That old saying, "The squeaky wheel gets the grease," tends to be something that middle children live by. They tend to beat themselves up over the tiniest of failures and do not set goals for themselves. For some reason, if you look at most families one parent tends to bond with the oldest child while the other tends to form a bond with the youngest. The middle child takes notice of this and feels unloved. This leads to their feelings of inadequacy and that empty feeling that many of us often experience. Jealousy also comes into play here because they resent everything that the other children do. In extreme cases, middle children even act out with what some would call "psychotic" behavior. All of that jealousy and resentment just piles up inside of them until they just lash out in anger or violence.

I'm not going to say whether this describes my Prince or not.  He would hate this description.  But it's worth the read and the realization.

So for the record books...because we know he's keeping score...

Dear Smart, Witty, Persistent, Brave, Analytical, Detail-Oriented, Prince:

I have proof that you are not a forgotten child.

I know...you are shocked.

But it's true.  We think you are funny.  Like ReALLy funny!



And we DO like to spend time with you.

It bites that often those times are in a hospital.  But you seem to be fairly comfortable in that environment.

For your record books...we do spend a lot of time together in the car.  But you aren't always super engaged during those hours!

At the end of the day, we are your people.  We love you big.  We are proud of you.

I've been a mom for 15 plus years now.

And I still have no earthly idea what I am doing.  Faking it every single day is how this gig is going to shake out.

But I have had my fair share of "taking one for the team" moments.

I've logged some hours at Chess Tournaments.  I've played Legos far beyond my ideal time limit.  I've put on a swimming suit and paraded around the pool to entertain my kids on hot days.

I'm not bragging.  The truth is, I've done far too few sacrificial activities.  But I've done a couple.

The ultimate sacrifice was 2 weeks ago.

See, I'm an introvert.  This means I love to be home and alone.  I'm not particularly an "outside" girl.  I do fine.  No squealing and crying, but if I get to choose, I choose inside.  I am also not a risk taker.  And by not a risk taker I mean I am as opposite of taking risks as you can find.  I'm not even a risk manager.  I am a risk eliminator.

Enter stage left:  The Princess.

She blasted her way into my life and has been making waves every day since.

Two weeks ago, I (along with my dad and mom) took the Princess on a snake hunt.  Actually it was a herp tally.  Be impressed.  Go ahead.  I am.

In case you don't know what a herp tally is, I'll tell you.  It's a snake hunt.

No, I'm kidding.  It's a gathering of scientists, explorers, naturalists, and general outdoors man who survey a location and record their findings, particularly snakes and other crawly things.  **the beginning of the description is pretty spot on, the crawly things part is sort of my own paraphrasing.**

Early Saturday we loaded up all of our things crap bags of stuff weird tools GeAr and took off for the 2 hour drive to the tally location.

Cute side story:  my mom was in charge of packing the lunch.  She is also dieting.  But on trips like this diets are on hold and calories don't count.  When we opened the lunch container it included PB&Js, chips, pop, candy bars, cookies, and HoHos.  Hilarious!

The day was divided into two separate experiences.  We surveyed one large area before lunch and then drove to a different area for the afternoon.  I took the morning duty.  I spent 3 hours following the Princess as the Princess followed the experts.  They found all kinds of things I would have stepped on (accidentally) or walked past or tried to run from.







They picked most things up.  They gathered in groups to share and talk.  They sprinted through pastures to see what other folks were finding.  It was fascinating.  The Princess was in heaven.  I was extremely impressed with everyone I met.  I love watching people do what they love.  I have big dreams about her abilities and huge hopes she will meet that one person who can believe in her and help her conquer the world.

It's what we do as moms.  We clear the path for our children so they can soar.

After lunch, I decided to spend some time in the car studying and give my dad the chance to hike along with the Princess.

But I have to confess, I sort of got a little over-confident after my 3 hours of herping.  There was a piece of me that felt like it was a treasure hunt and you never knew what might be right under the next rock.

The afternoon was quiet.  The herpers were long gone on their hike.  Mom and I spent time chatting, reading, napping, and even a little walk.  Near the end of the afternoon I got antsy.  I knew the herpers would be returning and I was anxious to hear stories from my dad and my girl.  I decided I needed to get out of the car and go for a walk before the drive home.  We were parked beside a big open pasture.  I grabbed my camera, a walking stick and flippantly told my mom I was going to go into the pasture and find a big snake and show all these experts how it's done.

I'm so stupid.

I walked slowly through the pasture.  The grass was very short and there were almost no rocks.  It was literally just wide open space...30 yards from the car.  I stopped to look around, took a few more steps, and repeated this for about 10 minutes.  Slowly the herpers started to trickle back towards the cars.  One guy split from his group and walked my way.  As is typical with these folks, he walked up to me and said, "Are you having any luck?"  I smiled and responded, "No!  But I'm glad, I'm just here as a driver for my daughter."

The words were barely out of my mouth and he said, "Look!"

Pointing to the right of my foot about two feet.


He yelled to his group.

They came running.  As in, they were running towards a pair of rattlesnakes.  I was completely paralyzed.  Well, most of me was.  Not my mouth.  It wasn't my best moment.  I just kept talking.  These guys (the humans) got all excited and and used snake hooks to move the snakes and look at them.  The snakes just got pissed.  How do I know, you ask?  Because they rattled!!!!  A lot!


At one point one of the guys stood sort of in front of me (ish).  After my 16th question about wondering if the snake was at any point going to strike towards me or lunge at me or chase after me, the nice stranger took a few steps and put himself between the snakes and my mouth.

At some point they decided to let the snakes go back under the rock.  And that was it.  They just walked off.  I considered asking for a piggy back ride out of the pasture.  I did follow them.  Right in their footsteps.  Awkwardly close.  As we made our way back to the cars, they were already talking about something else.

I almost died!  And they were casually heading to their car to grab a beer.

In all reality, I'm not sure if I would have even seen the snakes until I was stepping on one.  Maybe I would have walked past without noticing.  But almost worse than either of those two scenarios is the one that still plays in my mind.  What if I found the snakes all by myself?  What would I have done?  Would I have screamed?  Would I have run?

We won't know.

Ever.

I retired my skills.

Letting the experts do their thing.

I will embrace them and encourage them and cheer for them.

From a safe little distance.

Also, behind glass.










 
  

It's an essential/must-have/cannot live without app.

The Princess has an iPhone.

Short of "chipping" her, this is my best bet for keeping very close tabs on her.  I can basically look and tell when she is moving from class to class during her school day.

We are going into a newish season of parenting and autism.  The princess is testing her freedom (totally developmentally normal).  She is desperate to get out of the house (totally developmentally normal).  She is longing for non-family-member friendships (totally developmentally normal).  She went looking for all of the above at the local law enforcement center yesterday (Hello! Autism).

Very often my girl hops on her bike and takes off for a ride around the park.  I have been cautiously allowing her this little bit of freedom.  I ask her to check in.  I often FaceTime with her while she is hanging out at the park.  I check her location via "Find My Phone".  We give her strong boundaries (that she crosses).  We live in a small town, so often I hear about her actions from watchful friends.  Until yesterday she has (mostly) explored the park.  Played at the playground with kids.  Visited with strangers.  She did crash a 2 year old birthday party one day, but the family recognized my girl and graciously engaged her, even offered her treats.  They were rewarded with an impromptu Cotton-eyed-Joe solo!  Oh, and she did drive by the local middle school and ring the buzzer (like a door bell) until the assistant principal finally opened the door and visited for a bit.  He didn't let her in to check the animals in the science classes, which was a bummer...but he was nice.  Basically, I have felt like these bike-rides were within normal limits.  Until now.  As I write this I realize the foreshadowing is actually pretty clear.

Yesterday, after school she asked if she could go for a bike ride.

The conversation went like this:

Me:  Where do you want to go?

Her:  The parks.

Me:  Where else?

Her:  That's it.

Me:  Ok, for a little while.  NO houses.  NO buildings.  NO people you don't know.  NO getting injured. (That's been another bike riding activity.  She seems to have a lot of accidents even though she is an excellent bike rider.  Her preferred solution for cuts and injuries is to visit the closest gas station for bandages.  They apparently keep their first aid kits very well stocked.)

Her:  Oh, I know!  I am just going to ride my bike.  That's it.

A little while later I headed out the door for the gym.  I passed the parenting job to my hubby with instructions to check on the Princess.

He didn't.

I'm not throwing him under the bus.

He threw himself there without any help from me.

See, the deal is - so often she is fine.  Quirky and bold.  But not worrisome.

So it's easy to let her have some limited freedom.

We thought.

When I came home from the gym...

No bike in the driveway.

I asked where the Princess was.

My hubby quickly said, I'll call her and tell her to head home.

I popped open "Find My Phone" app and found her...

Clear across town...

Nowhere near a park...

At the Police Station.

He jumped in the car.

I dialed her number.

No answer.

I used the Find My Phone app to ring the phone.  **Apparently that is the moment the owner of the phone becomes aware that Find My Phone even exists.  I am going to regret showing my hand like that.

Still no response.

When my hubby got to the police station, he was met by an officer immediately.  The Princess had seen him coming.  She was angry.

I cannot even fully explain the why and what.

At some point on her bike ride she decided she needed to fix her bike.  Someone suggested she go the the police station for help.  She did.  Then she wanted to chat.  The conversations ranged from deaths in the family to fights with mom to teenage angst.  She dialed up the drama.

I am not making light of her feelings.  I get it.  I've had to live with estrogen for 39 years.  It bites.  One minute it's all laughing and squealing and the next minutes it's tears and threats of running for the hills.  Sounds like she took the later part of herself to the police station and rang the bell (which they didn't answer quickly enough so she knocked on the window...Of.The.Police.Station.).

I really don't know what the conversations included as I have to rely on her variable retelling and the officer debriefing.  I do know it ended with peanut m&m's and hugs.

Small towns are really the best.

She's home.  She's banned from her bike for an undisclosed period of time.

And I'm trying to decide if chipping her is a realistic possibility.

It started as silly joking and bedtime stories.

It usually happens this way.

Out of the blue and without warning.

The sky was lighting up every few seconds with flashes of light from a storm 15 miles north.  We could hear occasional distant claps of thunder.

He's five and he's "not scared of anything."  But he asked if he could sleep in our bed.

I know these days are numbered.  I know that at 15 years old and 12 years old a distant thunderstorm doesn't drive them into my room.  Maybe they've realized I have no special power against storms.  Maybe they just aren't scared anymore.  But whatever the reason, the big kids just head to their own rooms.  But not my little Knight.  His place in a storm is right in between us.

His words are exploding from his little mind.  I wonder sometimes if we forget how much he knows and absorbs as he struggles to articulate fully all of his thoughts.  In spite of Apraxia of speech, he is working so hard to show us how much is going on in his little head.

It breaks me.  Every time I feel physical pain as he works out great big thoughts...knowing every beautiful word is a precious gift and a result of so much work.

I think it was the storm and the soft bed and the cool room.  He wasn't quite ready to sleep.  He was glancing out the window and alternating between stealing pillows and somersaulting around the bed.

The questions began.

"What is Heaven like?'

"I don't want to die and the day to be over."

"Why did God make us to die?"

"How do people die?"

We answered the questions as simply as we could.  In all honesty and without drama or fanfare.  But gentle and loving.

As he asked each question, he fought his emotions.  His voice wavered his eyes filled just slightly.  But he needed to know the answers.  So he worked to ask each question...sometimes having to repeat certain words until we understood.
In an attempt to move towards another conversation we slowly steered the talk towards travel and vacation.  But if I've learned anything about a curious kiddo...it's that they can seldom be led far from their current thoughts.

He brought us back around to his thoughts with more questions.

"What was I like as a baby?"

"What did you say when you saw me?"

"What did dad say when he saw me?"

"What about my old mom?"

And there it was.  Without warning.

"What about my old mom?"

"What did my old mom look like?"

"What did she say when she saw me?"

Adoption.

It's such a miracle.

But my perspective of adoption is just one of three.

I consider my perspective the least difficult.  And I certainly feel strongly that my perspective needs to be communicated.  But I won't force my ideas.  The truth of the matter is my perspective is probably the easy one.  I only gained.

I am committed to giving space to each of my 3 miracle kiddos as they explore their own perspective of adoption.  I will not communicate any level of shame over talking about a "real mom" or an "old mom" or  "tummy mom" or any other term they use as they work it out.  I will not pretend to understand their feelings.  I will not over sensationalize my perspective as the only perspective.

It's not easy.

I would love to scoop them up and prevent any emotions of grief or loss or confusion.  But I'm 3 for 3 with conversations very similar to the one we had last night.  I do not know if this process is typical in all adoptive families or if this is the culture of our specific family.

But I do know last night, snuggled in our bed, my little Knight asked question after question about his birth story.  I teased him about how I held him all night (true) and didn't want to share him with daddy (true).  I told him I snuggled him tight and chased everyone away if they tried to hold him (not true).  He giggled.  But the questions continued.  It wasn't until we told him the true story of how we all sat together, side-by-side, and passed him from mommy to daddy to "tummy mom" and back to mommy and round and round the circle that he finally seemed to find some sort of comfort and rest.  Our last words as he snuggled down between us were centered around the idea that every person in the room lovingly held and snuggled the little baby Knight and then shared him with the other people in the room that loved him just as much.

I know we are just beginning these conversations.

And I'm never really ready.  But I love to participate in the journey.

I'm a mother of special needs kids.

There, I said it.

**Warning, this post is purely vulnerable and without filter.  I recognize on the re-read that a million holes could be poked through the reasoning.  I understand that it could easily offend any number of people.  That is not my intention.  Please do not take these words as anything more than my words, about my family.  It is my way of connecting my reality to my sense of guilt to my understanding that it's always better and worse in every direction.    

Mom of special needs kids is not my favorite way to frame up my life's work.

I usually talk about my children in terms of their exceptionalities.

It's probably semantics.  I already know.

But there is something about saying "special needs" that gets under my skin.  I don't mind it for other people.  But for me, I feel like a faker.  My kids have special "needs", but they are fine.  By fine, I mean, high functioning.  By high-functioning, I mean they are lucky.  By lucky, I mean blessed.  And then I just feel like a jerk for saying anything.

Let me try again.

Families, every day, deal with significant barriers.  Children with severe restrictions.  Children who have beautiful outlooks but are confined to their reality (chemo, wheelchairs, cognitive delays, debilitating biological disruptions).  Those families get to claim the title.

Our family deals in grey.

• We have autism, yes.  But the brand of Autism we have looks like a perfectly neuro-typical child with really strong behavioral issues (read: naughty...hysterical and brilliant and magical...but naughty).  
• We have Crohn's Disease, yes.  And it's a life-long, no cure, constant treatment brand of Crohn's  Disease, but it's also in remission and mostly not interfering with daily life brand of CD.  Yet, this child is choosing to be naughty as well.  Is it stress and anxiety from a chronic disease?  Is it PTSD from medical interventions that exceed what any child should experience?  Is it learned behavior from a lifetime of living in the shadow of autism?  Is it parenting? Is it hormones?  Is it a phase or a habit?  
• We have Apraxia of speech, yes, as well as a learning delay. Also, allergies and (at times) scary asthma.  But he's happy.  He's growing.  He's thriving.  He has yet to fully realize the impact of his exceptionalities.  He does a lot of medication every day for asthma and allergies.  He is in speech 5 days a week.  He has no idea this is not typical for 5 year old boys.  

We are not:

• under-resourced
• impoverished
• prematurely terminal
• without support systems
• enduring catastrophic loss
• living daily with severe limitation

She woke up better.

Healed!

In her classic way, she came bounding up the stairs from her bedroom yelling, "I feel so much frickin' better today!"  And then she didn't stop talking for three straight hours.

I used the morning to de-flu-ify my bedroom.  She claimed it during her siege of illness.  All blankets, sheets, and pillows needed washing.  Windows needed opening.  Surfaces needed decluttering.  It's like coming out from under a rock.  So much freshness.

And also this,

We added a little piece of heaven to our home.  Fully screened and nearly perfect.

I love all 4 seasons.

And we get to experience all 4.

Usually.

Although, this winter was a little lack-luster with zero snowman snow.

In spite of my anticipation of new seasons: different smells, sights, sounds, landscapes, all of it...I usually find myself anxious about winter.

Let's be honest, I'm anxious.  The bottom line is, I'm sort of plagued with anxiety much of my life.  It's annoying and exhausting.  I don't mean for it to happen.  But I'm prepared for it.

Winter is my typical nemesis because of illness.

If I look back on my life, my anxiety about this season started with becoming a mom.  My fierce, protective, momma-bear nature really blossomed that first winter.  My princess was born in January.  As a nurse, I listened to concerns and warnings about seasonal viruses for babies.  I kept my baby as close and covered as possible.  And yet, RSV descended like a terror.  She was 3 months old - so technically not that winterish anymore.  It was spring.  But winter still felt like a bully.  My princess wasn't able to breathe well enough to stay home.  She was admitted to the hospital, transferred to a pediatric ICU via ambulance, and kept stable under the watchful eyes of seasoned nurses and doctors.  I still have PTSD.

Then 3 years later, my Prince was born in November.  On Christmas Eve, I found myself in a hospital room with a 1 month old baby as he struggled to fight a respiratory virus.  I did not cope well.

Since then, I've been extra jumpy.  Extra nervous.  Extra everything.

And as I sit here today as the mom of a 15 year old Princess, a 12 year old Prince, and a 5 year old little Knight, I'll tell ya...my heart still beats faster when I hear a cough or a cry for "mom!"

Today the Princess is on day 5 of Influenza.  Stupid winter virus in the spring.  And this virus isn't just fever and coughing and general misery...it's also head to toe body rash.  It's making her crazy.  It's making me crazy.

On this post, I made a bold statement about making this year the year of the blog.

Hmmmphh.

Hello, April.

But the past few days have come with such a strong desire to write.  I've been listening to stories about people who write.  I've been reading books about writing.  And still, I'm not writing.

Until today.

See, I've missed so much.  So many moments and stories.  How can I pick up today when I need to figure out how to go back and record the yesterdays I missed?  I've been feeling it for a long time now.

And just today, I decided.

I am missing the recording of today's stories out of regret for not recording yesterday's.

I suppose I live a lot of days in much the same way.

Missing so much.

I'm living in a war-zone right now.  I hesitate to admit that out loud.  Our life is beautiful.  We have more than we need and almost everything we want.  And still...nearly every day is filled with much strife and anxiety and chaos.

Autism - whether you consider it a personality gift or a disorder or a difference or exceptional moreness - it's hard.

Twelve year old boys are hard.  Or at least mine is - he seems determined to choose a path that appears to be miserable and immeasurably hard.

My little Knight has turned 5.  He is such a sweet boy.  However, he didn't want to be left off the list of "things that make mommy drink."  He is struggling with allergies and asthma.  Many days, most days, he is just fine.  But then he isn't...and it happens lightening fast.

I'm sad.

I feel guilty.

I get defensive about all the issues.

I wish for an easy life.

I feel like a brat even writing those words.

I keep secrets.

I am desperate to be real.

I am terrified of being vulnerable.

But at the end of the day, I write.

We'll see where it goes.

He says I don't like change.

Does anyone?

The truth is, that isn't fair.

I like change just fine.

My hairstyles through the years can certainly back me up on this statement.

What I'm not wild about is the unknown.

2016 has the makings of being a year of change.

I say bring it on.

I also say, don't sneak the change in...give me plenty of opportunities to see it coming and do a little research.

True confession:  I always wish January 1st was on a Monday.

Starts things clean and new with the new year being on on the first day of a new week.

I tend towards the obsessive compulsive side of life.

Also, I'm an introvert.

And a lover of words.

Sad, sad irony.

I plan to make 2016 the year of the Blog.

Cheers!

This Christmas, I received one of the most meaningful gifts of all time.

Meaningful because it represented, for me, the things that I hold to be the most important in life.

On Christmas Eve night, while I was driving the streets of my small town trying to get my little Knight to fall asleep in the midst of his illness of coughing and fever...I stopped by my friend Sarah's house to give her the gift I bought her for Christmas.

She came to the car and sat with me for a few minutes and gave me this: