So many pictures.

Early Steven and his car noises.

I have boxes of pictures from the pre-digital age, and since I took the leap to the use of a smartphone...well, I'm a hoarder of images.

I was gently teased over the weekend about being Steven's personal photographer. It's true! Video too.

Click here to see the best day ever...

Steven takes such joy in using the images we capture to relive all his happy times. He pores over his collection of joys like a giggly miser. He wants to make sure his friends and family get to see ALL of his adventures! 

 It would be easy for me to just take that at face value and not dig any deeper.

I also have a need to share him. I see what he does to people, how his joy spreads, and how he takes over a room.  I've been told time and again "I wish we could bottle that laugh."

I do too.

I feel the same kind of compulsion to share him as he does to show off to his friends near and far, to leave a wide and loud trail of laughter and that smile.

I'm just a little afraid.

My truth is in the images I've deleted, the ones I wish I could delete from my mind altogether. Frozen images of silence, tubes, machines, wires...stillness.

This is one I kept, after he was stronger than the machine that kept him breathing, when it was safe again. I was free of the ache I felt going home to an empty apartment, dropping in a heap on his rumpled bed to find some sort of reassurance he was coming home to it. To think of the walls NOT echoing with that laugh, a hundred fart jokes, and the same six tv shows sending him off to sleep each night was just more than I could take without breaking down.

As a friend said, "The world needs Steven in it."

It does.

When you lose someone, you forget how they sound.

With hope and optimism, he's going to outlive us all. Since birth, Steven has been a masters-level defier of odds and all-around miracle man.

I'm still going to bottle that laugh all I can.

The world will always have Steven in it.

I'm Not a Good Father

I remembered why I no longer watch The View about three minutes in.

They asked their male guest co-host about fatherhood, then tore into him when he started to answer.  Apparently he had made some comments on the internet that a father can give a child things a mother can't.

Whoopi and Jenny came unglued.

How DARE he say that? How dare he insinuate that a woman can't give her child everything all by herself? There are plenty of women who... why I never... HRUMPH!

I've raised my kids alone for most of their lives after the death of their father.  I know what people are TRYING to say when they give me a pat on the back and say I'm both mother and father to them.

That's just not true.

I am a hell of a good mother according to my kids, but I'm not a father.

Now that I've lost a few of you and put my feminist card at risk...

I made the conscious decision, after a couple of failed relationships with men who ultimately failed the "father material" test, to go it alone. At that point, I would have probably bristled at the notion (... and I DID when a teacher told my SON his mother needed to find a husband, but that's a rant for another day.) that I couldn't give them everything. My pride was at stake.

I've done a pretty decent job of broadening my horizons, embracing the finer points of guyness... I go to car shows, I can scratch, burp, cut the cheese... I have an encyclopedic knowledge of poop jokes.

That only takes one so far.

I can show them how a strong person copes with the metaphorical poo life flings, and I can build them up to not be limited by gender roles and to respect people regardless of their place in life.

What I can't do is SHOW them what a man should be. I've been fortunate to have had some good role models for them along the way. They've had some good uncles, family friends and now Steven has a whole new set of positive influences in the men of his day program and our activity group. He isn't just watching from the outside, pining for a Dad, that's not how we roll.  Instead, this amazing group of men has reached out to him, included him and showed him that men can be equal and loving parents to their children and stepchildren. He sees how they treat their wives with love and respect... and he gets to whisper and giggle with them about the mysterious "guy stuff".

I know some spectacular single fathers, too. They've stepped up and taken on nontraditional parenting jobs just like I have. Wonderful fathers? You bet. Mothers? Nope.

I'm NOT saying a single parent needs to rush into finding a partner, nor am I blaming women OR men for not doing things "right". I had both of my kids without the benefit of marriage, and my daughter was adopted by my new husband and had a real Daddy for far too few years before he died.

My own father died when I was in my obnoxious teen phase, so my experience with a Dad is fairly limited. My uncle died before my Dad did, but I carry part of them both with me.  I had a deep, enduring love for my grandpa, and had the privilege of caring for him until his days were done.

Each of these men brought something to my development that shaped me into the person I am now, into the parent I am now.

They loved me and taught me differently than my sweet Grandma, who inspired and comforted me in her own ways.

Does that mean I think parenthood is ONLY for man/woman couples? No.

I believe same-sex couples have as much to bring to the parenting table as anyone, maybe even more since they have to work hard and overcome much to become parents at all.

I'm just not ashamed to admit there are things I don't know. Things I just CAN'T know. I'm not offended at the notion a child can do better with the yin/yang of personalities and gender than with just ME.

We all do the best we can.

I wonder if it's just my intense dislike of Jenny McCarthy that made me yell at the tv and ask if she's SO sure she's parenting perfectly all alone, why is her son soon to have his second stepfather in his young life?

Hmmm...

I guess neither of us are father material. :)

Hidden Barriers to Independence and Mom's "Business Face".

His best attempt at The Face.

"I don't know what to call your face." he says out of the blue.

Huh?

"When somebody messes up and you scare them with your face..."

Ohhhhh... that one!

We decided to name it Mom's Business Face, because the eyebrow goes up when I mean business. According to the boy, flames hoot out of my eyes, smoke comes out of my ears, and I have an evil smile that burns flesh. I'll have to ask his sister for a second opinion. I picture myself as a firm Mary Poppins, but it sounds like I come of as Maleficent.

Anyway...

We had taken a trip on the city bus that day, on a quest for barbeque at Ribfest. We were really excited, since it was our first time riding since the city finally put in sidewalks on the bus stop corner. Until now, you would have to wait in the grass or mud depending on the weather, and keep a sharp eye out for holes.

We won our game of 17th Ave Frogger and got across to the stop in one piece.  We caught the bus just in time, and Steven navigated the ramp and tight turn with skill. I helped get him into position, since the driver wasn't getting out of his seat. That was unusual.

He watched from up front as we waited expectantly for him to come back to secure the chair in the restraints.

Nothing.

EXCUSE ME? caught his attention, but he looked lost

Tie-downs?

Double whammy... language barrier AND he must have slept through that part of his training.

*sigh*

I felt the eyebrow go up, it has a mind of its own.

 Despite a couple of stuck straps, I managed to do it myself, since the driver wasn't even able to find the tie-down spots on the wheelchair.

We filed a complaint, and while I'm fairly sure this driver won't be forgetting his training again, it's not the first time... nor will it be the last.

One driver looked me in the eye and said Steven's lap belt on his chair was good enough. A few more just couldn't get the shoulder belt to work... and they have each met the Business Face. While I'm using our city bus trip as an example, we've had similar instances with private ride services with drivers who know how to secure chairs, but try to get away with leaving off a corner tie-down because it's "too hard" to get to or they forget until Steven calls them on it or they catch the eyebrow in the rear-view mirror.

It shouldn't be so hard. What about all the people without a Mom figure to help them stand firm while their needs are met? While Steven is learning to speak up for himself for the times I'm not with him, what happens to the people who can't muster the courage?

Don't get me wrong, Fargo is a great small city, full of opportunities. When you look at the big picture, people with disabilities have so many advantages here over cities many times the size. When you look at it all on paper, it looks like a smooth system.

The devil is in the details.  You can't see them until you're in the position to have to depend on others for your safety in a far more vulnerable way than would be comfortable for most of us.

I'd love to see some of our city officials dress down and navigate the metro in a chair.

I wonder what kind of face they have?

For the love of God...

Alternate title: How not to hurt someone whose child is suffering.

We have a friend whose child is being tortured with never-ending bouts of pain, surgery, medical intervention... pain is trying to beat the life out of him. I can only imagine the level of exhaustion they're feeling, having been to the brink of my own sanity at a much lower level a time or two.

Everyone feels helpless.

If you have a strong faith, I'm sure it's hard to fight the urge to share it with someone who has been laid low in life... but trying to justify their pain to them by telling the parent, or worse, the CHILD how it's all part of God's plan, or how they just need to believe HARDER only causes more pain.

There is nothing useful in a locker-room pep talk to someone who is depleted in every way. 

If you think it's constructive to teach a lesson via sermon to someone who you feel could benefit from hearing how YOU find comfort in thinking God is using our baby to make you grateful for your own child's robust good health, please don't share your epiphany while they're cutting mine open again.

If you're sure suffering is the One True Path to enlightenment for the next life, there's a time and place for sharing your theory... not here and not now.

I get it, I really do.

Most people who treasure their faith are offering their prayers up as the only gift they have in hopes of healing the suffering they see.

Like his guy.

Tell me you're praying for us, and I'll see your heart and know it's a gift of love from your heart directly to my child.

Let me know you're there, wanting good things for us. I'll feel less alone.

Let me pour out my heart to you, or even just sob uncontrollably for a while while you hold my hand and just sit there.

You're good enough. Your love is good enough all by itself.

Understand that there's just no way you CAN understand our pain, even if you've had your own pain. We all hurt differently.

Tell me you feel helpless and don't KNOW the answers. I'll know you get it. We ALL grapple for just the right thing to say as if it will magically take our friends' pain away because we love them.

Understand that not seeing God the way you do just may be my path. I promise not to come into your moments of pain to try to convince you there is NO God because of your child's pain, that your belief suffering is the path to heaven is wrong, and you should doubt more and just deal with it because shitty things happen to people who don't deserve them every day.

I won't. You know why?

Because it's not about me.

I believe in miracles, no matter what they're called. I've seen my child's eyes open when nobody thought they would.

I believe that even the people who feel the need to preach, even the one who told me my child suffers because of my sins, because I don't have blind faith, or because I need to visualize with sincerity and "manifest" wellness probably mean well.

Deep inside.

Very deep.

Shake, Rattle and Roll.

 Seizures suck. I've been slow in writing about his last trip to the hospital because we've been sorting it all out.

Steven has had seizures that we've caught since he was 5 or 6 years old. They can't pin down where they come from, why he has them, or how to make them stop. Luckily, his seizures were mild, he never lost consciousness and we were just irritated by them.

Were...

It's starting to look like (and this is my Dr. Mom Half-baked Theory) the last med we added after 5 futile days in a Minneapolis center has created its own monster.

Three times, we've tried to step down his dose and three times set off a tonic-clonic nightmare in his brain that left us all in disbelief. Instead of our comic routine of growling and laughing to try to scare his leg spasms away when a "regular" one hit after PT, his head snapped to the side, he went silent, then the violent jerking and twitching hit.

Time stopped.

I guess if you're going to have a crisis, an office attached to a walk-in clinic with a fire station across the street is as good a place as any. We were immediately surrounded by what seemed to be the entire cavalry.

I remembered to breathe while trying to look calm and pull answers to questions lobbed from all directions out of various crevices. As long as HE was breathing,  I could too. Last time, he stopped...

The fireman and the paramedic who drove the ambulance kept making sure I knew they had lots of radio traffic going, so not to be freaked out if I hear things that sounded bad.

My eyebrow went up.

Oh, you mean like last time, when I wasn't supposed to hear the guys hovering over my kid radio in that "the patient has become critical"?

Okay, I'll play along while I adjust myself to make sure the Mom eyes in the back of my head had a little help from a sudden case of lazy eye... when Moms can see to the left without turning their heads. This is usually only used to watch kids without alerting them to the surveillance. It just also comes in handy to produce the illusion of cheerfulness and blind trust in the medics while still allowing one to see every move in the other direction.

Poor Steven, the pretty young lady working on him keeps asking to hold his hand.  If THAT didn't get him, what would?

He came out of it just when his new friend was about to add some ativan to his versed. He started to wake up after the shaking wound down, and I was thrilled to see him bat his lashes at her a little.

He was improving steadily while we held down the fort in the ER. My brain bounced between the young nurse who remembered him from high school and the grumpy man on the other side of the curtain who was steadily losing a battle with the women in his life about whether he was going to just march out of there, get his Duane's House of Pizza and go HOME or humor them and spend the night to see if his blackout was another heart attack like the one he conveniently forgot to mention to the first doctor.

His wife and I bonded, because my guy heard about the Duane's idea and suddenly thought it was GREAT planning.

Thanks, old guy.

I DID almost have my own heart attack while they rolled Steven off for testing.

We refer to it as:

The Bathroom Incident. (Cue dramatic music)

The restroom for guests was just across the ER, past the busy nurses' station. I'd had a LOT of coffee, so I was a frequent flyer of sorts.

On my third trip, just as I was completing the process and washing my hands like a good girl, there was a knock at the door.

"Are you okay?"

Um, yes?

I opened the door to see the young nurse and thought "WOW, this is service!" All eyes were on me, and I hadn't even played the trumpet or anything.

Oh, but you know what?

The help button has a loooooonnnnggg cord attached. Somewhere between liftoff and purse-grab, I pulled it.

*sigh*

I gave a red-faced parade wave and scurried back to my spot in time to hear the other dude give in to the third daughter joining the dogpile. He got his pizza IF he stayed.

Steven decided he could do ONE night, especially since friends and helpers he knew and loved helped us get settled and retrieve his chair and the van. I got to run home for a bit, feed the pouting cats, pack a bag and grab a Happy Meal. Little did I know when I got the My Little Pony meal, they were referring to the contents of the bun and not just the toy prize.

After double-checking with the nurse... a nice young man with an accent that surely inspired at least one Coen Brothers stereotype... we settled in to "sleep".

The old man in the next room had to have had pneumonia, because the only thing that could have produced those sounds otherwise would be an old Model T backfiring in a muddy barnyard. Just when I got my round edges packed and balanced in the square corners of the unforgiving vinyl and concrete recliner, here it came... HOOOORRRRRKKKKsputterBARKBARKwhoooooopGROOOONNNK, with a phlegmmy spit for emphasis.

By about 5:00 a.m., it left me contemplating odd things...

The size of this baby... what is IN the wipes anyway???

Were we actually stuck in the bottom one here?

What's the worst that would happen if I tried this at home?

Last but not least... just how absolutely wonderful it was to sit awake and listen to him breathe.

And it isn't even Mother's Day yet!

An impromptu poem by my son:

Nobody loves me as much as you do,
as much as you do when you help me go poo.

Hannity, a new high in lows.

This is an example of everything wrong with people.  The guest uses a hurtful slur, doubles down on it with a comment about Down syndrome ... and all they worry about is that they aren't "allowed" to use their preferred insults anymore due to "political correctness"?

How about human decency?

Couldn't he have said "That's not an acceptable word anymore." instead of "We aren't ALLOWED to use that word..."???

Oh, right... the mean people who care about our children and teaching them not to use words to hurt each other are trying to take your freedoms away.

I have a few words for you Mr Hannity and guests, but I think they may be too big and/or meidcally impossible for you to perform.

Hannity and his lovely guests. Click here.