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It is what it is.

I used to be a tad more open minded to other opinions.

I still try to be but I find it harder.

And if you find me difficult and unrelatable, I get it. It’s not you. Really, it’s not you. It’s me.

And perhaps it’s the company I keep. Nothing is worse than a tribe of special needs parents reminding you that health is important, wearing a mask is important….nothing ruins your mojo more than special needs parents who have to run home to oxygen, suctioning, feeding tubes and bottles of purel. Special needs parents are not very sexy.

And bereaved parents?

Get. Out. Of. Town.

Never, ever talk statistics about how many children could die of COVID to a bereaved parent. To a bereaved parent, we beat the odds. Anything can happen. Don’t try to rationalize life and death based on what you saw on Fox News; especially if its not yours.

When was the last time you attended a funeral and sat in front of a baby casket? Never?

Then count yourself lucky and STFP.

Am I angry? Hell yeah.

Stop talking about things you think you know and I hope you never ever know.

But really. It’s not you. It’s me.

Of course I seem scared to you. My stories are your worst nightmare. The outlier to your statistics.

But I am not scared.

I was scared when my daughter seized for the first time. After the 20th time, it was old hat.

Cause it is what is it is.

I was scared when she caught MRSA multiple times and it took two weeks to get a bacterial infection under control. I was scared when I was sent home with two IV antibiotics to be administered two hours around the clock through her PIC line.

I was scared when I performed CPR for the first time. I hope I never have to perform it again.

But hey.

It is what it is.

160,000 dead in five months. But its not your Mother, your Father, your Brother, your Child.

Is it?

So you can ignore it.

It is what it is.

Until it’s yours.

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Happy 30 Years American Disabilities Act

I missed a birthday yesterday. It’s an important one so I will send a cake.

30 years ago the American Disabilities Act was passed. 30 years ago a law was created stating that you could not discriminate against those who had epilepsy, you could not refuse to serve someone in a wheel chair, you could not deny employment to someone because they had a hearing aid.

What is crazy to me is that before 1990 you could.

I was 19 in 1990. Selfishly, I cannot say I remember this historic date. And as a somewhat blue leaning voter…….I say thank you George H.W Bush. Good-on-ya.

This was the Capital Crawl on March 13, 1990. They could not walk, so they climbed up the Capital stairs.

Crawled. Because their legs did not work. And because their legs did not work, they faced discrimination……only 30 years ago.

Crawled. Because there was no other way up.

Four months later, Bush signed the ADA act, a bill written by Tony Coelho, a California Democrat who suffered a head injury at 16 that evolved into Epilepsy. In college, when he wanted to become a priest, he was told he could not because according to Canon Law, people with Epilepsy were possessed by the Devil.

This was in 1960. Apparently 60 years ago you could still be possessed by the devil.

30 years ago, I had no idea the impact this law would make on my life. I will always be grateful for ramps, accessible buildings, wide doors, individualized services vs institutionalization, access to education……my ADA friends are nodding their head and saying ‘yes…..but we have such a long way to go’

As a mama who changed her daughter on the floor of a non ADA accessible bathroom, yes, this is just the tip of the iceberg.

You can have 1,000 ramps but you cannot change attitudes…..or those who still park in handicapped spots 😦 And today, in hearing a Westminster Colorado teacher refer to his special needs students as ‘retarded’, yes we have a long way to go.

And it goes without saying that those in undeserved communities struggle for these ADA rights more than anyone.

But despite the work that needs to be done, despite partisan conflicts over funding and the fight that parents face every year, with every IEP, there was once upon a time when we all came together and did good.

It wasn’t that long ago.

And it should be celebrated…..

Happy Birthday American Disabilities Act. Thank you for paving the way.

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A July for the Books

Last night Hubs and I opened a bottle of wine and toasted to the end of our July.

“Well”, he said, “We’ve had worse Julys.”

This is funny…and sad. I dread July. This one month marks the births and deaths of both kiddos…..all wrapped up in a poopy 31 days. Kinda like Baskin Robbins 31 flavors of ice cream. But awful. And no sprinkles.

I have never hidden the difficulty of this month. Not only for me but in trying to honor my Hubs. Here is how our July usually goes………

Me: “This month is awful and hard and I need to surround myself with as many people who support my cause as possible.”

Hubs: “This month is awful and hard and I need to surround myself with me. And maybe my wife….if she is not surrounded by other people. But she usually is….so just me.”

July is the month we lost both Jack and Samantha. It is also the month that our team of 60 get together and climb 180 miles for a cause embedded in my soul. My grief has always been diluted by my miles, and my sweat, and your hugs, and cowbell.

I missed my diluted version of July.

Full concentrate grief July is a lot to manage.

Grief is a hard thing to anticipate. Something that seemed okay last year can sting the next. And on the flip side, an issue that was so important last July can be forgotten. That’s the crazy thing about grief.

And the statement above? Only applies to you. Everyone else can be having their very own Grief showdown…..and you might not even know it until its high noon and you’re standing in front of the General store.

I do think we all survived….by the hair of our chinny chin chins (which might be longer because of work-from-home policies?) but we did survive. The magnitude of how hard the weekend was just reminds me….be kind, if it doesn’t matter let it go, Love your Loves, and be cognizant of another’s battle. We are all missing our people. Give Grace.

And with that, Adios July 2020, you Mother F#cker.

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Psychomagnatheric Slimeflow

Uh yeah. Your honor, what we’re trying to say is all of the bad feelings. You know hate, anger and the vibes of the city are turning into this *sludge*. I didn’t believe in it either. But, we just went for a swim in it and end up almost killing each other.

Ghostbusters Two was released in 1989 and it did okay according to Rotten Tomatoes.

It was not the original Ghostbusters- the Staypuff Marshmellow Man made no appearance, the tone was a little more somber and there was Vigo.

Vigo the Destroyer, a cruel leader from the 1500’s who comes to life in a painting and tries to possess a baby named Oscar so that he can rule again in the 21st century.

I do have a point to this post….but first, I have to do this…..because it’s my blog and I find it hilarious…..

Vigo the Destroyer
Or Vigo the Destroyer…

Uncanny! Hold please while I chuckle for a second.

I’m sorry. According to polls, I have offended about 30% of you. But it’s my blog and you can walk away. Vigo the destroyer was really not the point of all of this.

Instead I would like to talk about Psychomagnatheric Slimeflow. Stupid movies pop in my head all the time. In this stupid movie, the sewers of NYC are flowing with this negative slime. This slime gives Vigo power and starts to take a community down.

Psychomagnatheric Slimeflow has infiltrated our country.

I talk to my friends, my family and my tribe. We talk about gratitude, being thankful and fortunate….we do this at a social distance with cute masks.

But underneath, for all of us, is an undercurrent. An undercurrent that feeds uncertainty and anger.

“Do I send my kids to school or see my Grandma?”

“Will I find a job?”

“Will I be able to feed my family this month?”

We live with an undercurrent of uncertainty. It makes us quick to respond, quick to anger, quick to draw conculsions.

I had a bad weekend. It was a double-decker Psychomagnatheric Slimeflow Sundae.

A friend asked what I was doing for self-care. I love this question.

Ask this question. Ask it often to your tribe that you can’t always see.

What are you doing to take care of yourself?

Because that is all I can do……that is all you can do. Take care of yourself.

“I am swimming.” I answered unexpectedly. I get in cold, clean, crystal, chlorinated water and I listen to my breath. I do it again when I have the opportunity. That is my antivenom. What is yours?

I have felt the Psychomagnatheric Slimeflow creep into my veins, my house, my tribe. I have been short with others and been on the receiving end.

Do not discredit what this undercurrent can do at the same time, do not discredit your ability to rise above it; recognize it, protect yourself, move on.

And never, ever cross the streams.

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Grief in a time of Grieving

I woke up at 5:00 this morning- wide awake, listening to the Starlings dance on the roof and watched the sun slowly iluminate Longs Peak.

June 30th always wakes me with a jolt, a collective FU(K, a deep sigh and a muddled plan to get through the day.

It’s hard to relive one of your saddest days. Grief freezes time and memories into smells, sounds and snippets as vivid as film. As the day goes on, the edge wears off. I become distracted and the day passes. But the morning of June 30th is my time. My time to remember my Jack. My time to remember how a day started with such promise and how it ended.

15 years of this June 30th- some years are better some years are worst. But today will always be a deep stain on the rest of 365 days. And today, as July-eve begins, so does a collective month of bittersweet anniversaries.

And I am not on my ‘A’ game this year.

This year I am tired.

Four months of unknowns and quarantines, and riots and a bad economy and a pandemic that keeps raging; I am not going into July as my best self. I’m showing up disheveled, a bit anxious and fully aware that the tribe I lean into during this time might be feeling the same way. I have lost my big girl pants and kick ass boots.

And I am tired of rationalizing the last four months knowing that we are still in the thick of it. I am so tired of fighting for my joy. I’m tried of drinking the kumbacha and marveling at how great my coffee tastes in the morning.

And you know what? My homemade masks are really the worst ever. My husband asked me the other day if we could please just buy some.

Fine.

Quitter.

I will be back. I’ll be back in some annoying joyful way…..give me about 10 hours, a glass of wine and access to our Courage Classic pictures.

This morning? Screw it. This morning I will lie in the suck for a bit.