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Welcome to Holland by Emily Perl Kingsley

Welcome to Holland

BY EMILY PERL KINGSLEY

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Making Room

You asked me for space, 

but I was squashed with yesterdays and tomorrows. 

You begged me for Honor 

but I was too focused on peace. 

You asked me for home 

I was crushed as you walked out the door to find it. 

Discombobulated

For those who don't know, when Andreana was little, her favorite word was discombobulated. I don't think I have ever heard Stephen say it until this morning so it made me smile.

As for the WADD, when my little sister, Andreana was little she stole a WWJD bracelet from a Christian book store. Oh the irony of that one.
Anyway, when speaking to someone last night I got off the phone upset and remembered that moment. And then I though, it isn't only what would Andreana do, but What Andreana Did Do that matters most now.

Snickers bars and Bullshit

Who the fuck is going to eat all the chocolate off my Snickers bars or fight over recipes or swap laundry photos? One minute she was sunshine, the next she was being an asshole, but always, always she loved me. When I was the most broken in my life, when I was so devestated I lost 50 lbs in a month, she was there. She took care of my kids. She went out every morning and got me a sweet tea and would give me 1 cheddar round. Just one, it was all I could eat and not get sick.
We would get drunk and do the Cupid shuffle with my parrot (he could dance his ass off). We would bar hop and come home and terrorize my kids by pretending to be monsters outside their windows. She accidentally made the best chicken and dumplings in the history of ever when she mistook a shaker of sugar for salt. She held my secrets and my hand. She made me madder than anyone but managed to make me laugh no matter how much I wanted to choke her. She loved me and hated me and loved me again and sometimes in the same day.

Grieving

It's 10:49 pm, August 27, 2018.
A year ago tonight my Andreana died.
I've spent the day in my room, mostly sleeping, my heart too heavy to even talk.
I've gone though a great many things, and experienced so much loss, but this, this has broken me.
For all my grasping and pulling, I can't fucking pull it together. It's too much.
I'm constantly exhausted. Everything feels loud and heavy and intrusive.
I go days or sometimes weeks where I'm busy enough or distracted enough to hold back what's coming, though I feel it always coming to swallow me. Always coming in the replay of laying in my floor screaming my sister is dead over and over. I need to scream it and never think it and let everyone and no one know it all at the same time. There is nothing good that has come of this, nothing. Nothing to make sense of. Nothing to rise up from. It's just a big fucking void continuously consuming me.

Birthdays and Brokenness

Birthdays are supposed to be full of joy, celebration, cake, balloons, gifts, family, excitement and pride.
Caring for someone with severe mental illness, with a history of trauma, those are very different birthdays.
Today is someone I love's birthday.
For the first time in 14 years, I am choosing to stay home. I can't do it. Not one moment more.
I've spent most of the last 14 years going to one lock down facility or another.
Security screenings
Small decrepit rooms that smell like a weird mix of urine and sanitizer.
Damaged walls from whoever was mad last that they won't bother to fix.
Strangers paid minimum wage sitting nearby.
Awkwardness
Pain
Gifts that meet hospital criteria, no strings, nothing sharp, nothing liquid or that could otherwise be cleverly used in the most awful of ways.
The birthday girl excited about things, never the people that come with them.
Aching goodbyes.
Long drives home full of tears.
Curling up in a ball and crying for hours because this is never what I imagined life would be like when I chose to be a mom.
So I'm choosing to stay home today.
She will still have all the birthday things, just not me, not that I would be missed. The things are what matter.
There will still be tears, but I get to skip all the in-between awfulness, all the pretending. I simply cannot do it anymore.

The God of Miracles

I'm tired.
I have a lot of people reminding me of who God is. And I guess I know what they are saying is true.
A God of Miracles. A God who can work wonders. A God who brings all things together for my good.
Ok.
But I'm tired.
Is the miracle that I'm physically present? What kind of miracle is that? Is surviving and living in almost constant aching miraculous? It doesn't feel that way. It feels like torture. I've always been able to swing things back around, find the good. But lately I can't.

Broken or Just Bent

So I got this tree a couple of years ago. It was discounted because it was badly curved in the middle. As most things in my world, it was broken, discarded. I took it home and built a frame around the bottom. From those I attached 2 support straps, one to the middle, and another pulling in the opposite direction a couple feet up. It looked straight but as soon as the supports were removed, it went back to bent and nothing worthy of being called a tree. A few weeks ago I decided to take them off again, and the tree stood tall and straight, leaves reaching to the sky. A couple days later, a series of storms came, and I was worried. I was certain I'd find the tree bent over, but as I opened the door, there it stood, tall and beautiful. The tree healed, it proved artificial supports unnecessary. The tree is just fine on its own, it only needed time.

Rigoletto

I've recently become a criminal and unlocked my firestick and have access to all the movies.

While most people are looking for the newest not yet released block user, today I searched for a yesterday.

Rigoletto, my sister Andreana's favorite movie. Right there. A click away. And here I sit balling and watching it alone as my kiddos are gone and my Stephen is sleeping.

My favorite quotes from the movie:

There is nothing more mean and ugly in this world than to have a beautiful gift, a loving spirit, and a desire to give and share these things, when there is nobody to share them with. 

My Andramada

To say the last 9 months have been the worst in my life would be an understatement. August 28, 2018 has changed me. Quite honestly, most times, I don't recognize me anymore.

Yes, I have fantastic children, an amazing Stephen, precious friends who fill in the missing places, a job that I love, and the most Earth shattering grandson that ever existed; but, at the end of every day, I lay down, and my heart literally hurts because my sister isn't here.

I know I should be grateful, and at times I am, but most times I'm just mad. Combined with other losses, it feels most times impossible. I genuinely cannot find enough tears.

It's all made worse because I really do have all those people and things above, and I know that I have hurt all of them in this place. They are trying, they are some really phenomenal people, but they are not my Andreana. Or Andramada, as I called her, well, because.

They are not the baby I spent countless hours wrapping their broken leg in Saran wrap before I bathed her.

They aren't the little red headed baby I grieved heavily over as I bounced through foster care.

They aren't the funny little barefooted girl who hid amongst my pile of stuffed animals for photos.

They aren't the young woman who worked so hard to rise above her circumstances.

They aren't the Mama who chose life for her babies when she knew it might kill her.

They aren't my saving grace when life broke me, who gave me one cheddar round, and a sweet tea, every morning when she drove my babies to school.

They aren't the ones who laughed as I cut all the chocolate off my Snickers bars and ate it because the chocolate ratio was off.

They aren't the one who waxed places we should not have waxed, when we clearly should not have been waxing.

They aren't the ones who did the Cupid shuffle with my parrot with me.

They aren't the one who drove way too fast to Gatlinburg to rescue my babies, and piled way too many people in their little ass car, because they could get there faster than me.

They aren't the ones who grabbed my Mama and drove to Charlotte when they knew I had reached my breaking point.

They aren't the ones who sat up with me all night, for days, when I hurt too much to see morning.

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Anchors, Jesus, and The People Who Won't Let Go

                               for·sak·en

                                                      /fərˈsākən/

                                                          abandoned or deserted.

1. "a journey into forgotten and forsaken places"

Jesus and I aren't friends right now. While we have had a strained relationship for years, losing my sister pretty much upped my resentment to insurmountable and my desire to fix it to nothing.
It's a weird place for me because since I was about 15, no matter what happened, I fell back on Jesus and my faith and the knowledge that "All things work together for my good."

And then my sister died.

And there is no goodness in that.

Not now.

Not ever.

Not for any reason.

It's fucking awful.

And so Jesus and I aren't friends right now.
And before you cast me aside, I want you to remember Jesus in the garden when He cried because He was alone or Jesus on the cross who asked why He had been forsaken.
You aren't forsaken by your friends.
You aren't forsaken even by people who you think love you.
In that moment, Jesus, felt forsaken. And right now, I do too.
I feel that way, but I know something different. I know because of the anchors in my life who refuse to let me forget. They cling tightly to me, no matter how chaotic things get, always reminding me that I am loved.
I can't see them and forget who Jesus is.
I can't feel their love and not know, even if I don't feel it, that He loves me.

Rape Babies and Other Horrible Things We Say For the Sake of Social Justice

I've taken a break from most social media.
I've managed to ride a great many waves through social justice and am typically able to see both sides, whether I agree or not, without too much personal consequence.
But not this. Not Rape babies or people arguing over which babies are ok to kill and which ones are not.
I am and have always been Pro Life. Not Pro Birth. Pro Life. Life of all colors, economic status, gender, sexuality, nationality, faith, socioeconomic status and on and on and on.
For me, the baby conceived between two people who love one another is no more beautiful that the baby who was unplanned. The healthy baby, no better than the one who will spend a lifetime creating everyday miracles of survival. The baby born in poverty, no less than the ones born with all they will ever need. The ones born in crisis, or of crisis, are just as precious to me than those who come in joy.
The circumstances of ones life do not change the value, before or after someone is born.
I wish I could say that I was born in a marriage of love and respect, but the reality is, it is a miracle I or any of my siblings are here. Some of us didn't make it. Domestic violence ruled my life before I was ever born. BUT I WAS BORN.
I was poor.
Hungry.
Unwanted.
Abused.
Abandoned.
and many many more things I may never say out loud. BUT I AM HERE. And despite all my sometimes fucked-up-ness, I'm glad I'm here.
I'm glad that I am here because my babies are here and now my grandson is here.
None of those things would have happened if my Mama cared about "Rape Babies."

In the Land of No Sadness in Which My Grandson Lives Because His Mama is Amazing

My grandson doesn't know sadness. He doesn't know chaos. He doesn't know pain or loss.

That's not to say he hasn't had his bottle later than the exact moment he wanted it or been pissed when his Mama, Daddy, or one of us didn't move fast enough; because that has absolutely happened.

But it has been momentary. You can literally show him the bottle you are making and he stops crying because he knows it is coming.

You can say to him, "Baby Nina is coming shhhh." And he does. He does hush because he knows I'm coming, or his amazing mom and dad, or other family members are coming. There is no panic, no loss, no grief.

His joy, peace, and trust are blindsiding and fascinating to me. The way he looks at me, even when he is mad, wrecks my heart. He trusts me. He trusts his parents and the world and the honest, humiliating truth is, this is new for me.

I grew up in chaos, darkness, loss and I swore my children never would. I then made decision after decision, from staying when I should have left to parenting children who should have never been in homes, I broke that promise.

While pregnant with my first we literally, and accidentally joined a cult. She was born less than 24 hrs after a 17 hr rush to TN, me crammed in the back of a car with a bassinet and the little bit of things we could cram in the car.

I began being a foster parent before finding out I was pregnant with my second. I should have stopped then, but I didn't. My ill placed pride and faith led me down a very long road, that I am still on, of chaos, brokenness, and heartache.

By the time my son was born, I was a broken woman.  I look at who I even was then and don't recognize her. I cried for hours, wrangled kids who were killing our family pets, and somehow managed to make sure everyone's physical needs were met.

I wish I could say things for better after that, but quite honestly, they got worse.

They got worse and worse until my eyes finally opened and I finally started choosing safety first.

The healing process has been long and awful. The cost to those who never chose has been most times too much and I may never forgive myself.

But that was then, and here we are.

Now we are home, we have home and peace and safety. We have everydays and hope that even if things are hard, there will be things.

His parents and family have worked hard to ensure that his biggest worry is if you don't rock him while you are also patting his back or if he decides to drink 6 ounces instead of his normal 4.

It is priceless and beautiful and so foreign I find myself constantly trying to sort it out.

And now my grandson is here and there is no sorting. There is no question. He is joy. He is the embodiment of home, safe, forever.