In The Presence of Tsarar

“God doesn’t need to vanquish your enemies, because He’s greater than your enemies.” As soon as the words came out of her mouth something deep within me groaned, “Yes.”

I quickly came out of my child’s pose and scribbled the words onto the notecard sitting next to my yoga mat. As I wrote them another part of me rose up in rebellion against each letter.

He’s God, he can take it away, so he should take it away. He can change it, so he should change it. But, oh, how quickly that argument fell void.

Then she referenced a section in Psalm 23 that I had never liked before and suddenly it clicked. This half-sentence that always felt out of place to me suddenly felt at home. An overwhelming feeling overcame me, the feeling that I had fallen at last into the words I needed.

“You prepare a table before me in the presence of my enemies…”

I looked up that word for enemies when I got home, it’s tsarar. Though it is most often translated as enemy, it is sometimes translated as distress, afflict, vex, trouble, bound, or bind up. So, these things that bind me, that I’m stuck with, that wrap around me and hold me captive, these troubles, these afflictions, the things that cause me distress, my enemies, God prepares a table for me in the midst of them. Right there where they can see me and I can see them. In the presence of my enemies.

At the beginning of class we were asked to set an intention for the summer, to ask God for a word that we could hold intentionally for the coming weeks. I knew the word that was mine before she had even finished speaking, it came fast and hard and I didn’t quite understand it. “Stay,” it said.

A few weeks ago another woman had asked me to sit quietly with God and ask Him for one word to describe my ministry at this time, that word had also come fast and hard and I rebelled against it with every fiber. “Wait,” it said.

At the beginning of the year I had asked God for a word for the year and the word I couldn’t shake, that followed me around like a lost puppy wanting to be mine, was “Hope.”

Today in class all these words came flooding over me. They were richer, fuller, deeper.

Stay here. Just sit here. Stay in the hard places, in the presence of trouble, in the presence of enemies, in the presence of things you don’t want and didn’t ask for. Stay. Keep waiting. Keep hoping. I know you are tired of waiting, tired of hoping, tired of surrendering, tired of these enemies. But, I’m right here with you. And I’m not tired. I have a table for you, a kings table, a sacred table, filled with bounty and goodness. And I offer you this table right here, in the presence of your enemies.

“When you are ready, come into chair pose.” She spoke the words from the front of the room and slowly we all bent our knees as if sitting in imaginary chairs.

“Sit down at the table, friends. Pull up a seat. God has prepared a place for you.” I heard the words and couldn’t keep the tears back. The water rose from deep in my heart with a loud rumble, but the tears fell silently down my cheeks.

“The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures. He leads me beside still waters.
He restores my soul. He leads me in paths of righteousness for His name’s sake.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows.
Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the LORD forever.” Psalm 23

Rejoicing in the journey,
Bethany

 

 

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Surrounded by Love

Friends, you all continually amaze me.

You have given to our family in so many ways, time and time again. It is truly humbling to be given so many gifts that could never be repaid, to be surprised by generosity over and over. So often I think “we must have exhausted our support base by now” only to find you all turning around to give again. Sometimes I worry that our needs will be so long standing that people will tire of hearing about them eventually. I worry that people will grow weary of hearing from us.

Today I saw a friend I hadn’t seen in a while. We chatted casually for about an hour. She asked about Sage and Bryan. In the course of the conversation some needs were shared, a new medical bill for Bryan, a new prescription insurance won’t cover for Sage. We talked about the kinds of needs Sage might have throughout the rest of her life and on into adulthood. She mentioned setting up college funds for kids and only half joking I said Thad would have to pay for his own college because all of our funds will most likely go towards Sage’s care.

By the time I got home she had set up a GiveForward account for us. It feels like it’s for an exorbitant amount of money to me.

I know there are so many other people with needs far more pressing than ours. I know that there are others more deserving of your financing, and my heart breaks for them. We have been so blessed to have good insurance and good family around us to help when needs arise. I think often of those who don’t have that. Medical expenses add up so quickly even with good insurance, even with a stable income, and family support. I can’t imagine not having those things. I feel like I should tell you to go find someone who doesn’t have those things and give to them first, and then if you want to come back and give to us we would be so deeply grateful.

I know though that generosity pours out of love, and love comes most quickly for those you know in some way, those you’ve journeyed with in some form. We are blessed and grateful to be surrounded by love.

We are so deeply and continually grateful for the love you all have already shown us. It feels like more than enough. It feels like more than we could ever repay. It has been and is overwhelming grace towards us. Your generosity has multiple times humbled us as it replaces fear with gratitude and desire with thankfulness. Thank you.

We are and ever will be gratefully yours.

Rejoicing in the journey,
Bethany

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Ask.

EDIT: Thanks to the quick generosity of so many we have fully funded and ordered Sage her very own Zipzac. The love that was shown to my daughter really blew us away. We are so thankful and so humbled that she has such a wonderful and caring support system around her. I know she’s going to need it as she continues to grow and develop. Thank you all for your care, your prayers, your support, and your generosity!

About a month ago a kind physical therapist let us borrow a Zipzac. And we fell in love with it.

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Sage loved being low to the ground where she could reach her toys more easily. She loved using it to get into the cupboards in the kitchen. The first time she got into the cupboards I wanted to cry.

Best of all it positioned her in such a way that she opened her left hand more. My daughter has an extremely hard time keeping her left hand open, let alone using it. But when she was in the Zipzac she would randomly relax her left hand and place it on the wheel. It was very rare for her to actually use that hand to push the wheel, but just the fact that her left hand was open felt like a victory and a step in the right direction.

Best of all it enabled her some small bit of self determined movement. She couldn’t move far in it, and she mostly just used the right hand, but by the end of the month she got pretty good at scooting very small distances just maneuvering with the right wheel. Sometimes I would leave the room for a minute and come back to find that she had completely turned herself around, or that she had moved a foot or two in either direction. It always made me want to do a little happy dance when I saw that she wasn’t in exactly the same place that she was before.

Sage has a wheelchair, which has been wonderful, but it is much harder for her to move the wheelchair than the Zipzac. The zipzac is lighter, more maneuverable, and it takes less effort for her to propel the wheels forward or backwards.

All this to say, we really loved it and were so grateful for the chance to try it out.

Yesterday I had to return it so that another family could use it. I am glad that others are going to get to try it out, but I dragged my feet the whole way there. I wasn’t ready to give it back.

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As I drove back home a simple word buzzed around my head and wouldn’t leave me alone…Ask. Ask. Ask. Ask.

So, I said a short prayer, “Lord, would you provide another Zipzac for Sage?”

And the word kept buzzing. Ask. Ask. Ask. Ask.

I don’t like talking about money. I don’t like asking for money. Or for help. Sage’s diagnosis, and Bryan’s, have given me much more practice at those things, but it’s still hard for me. I carry a lot of guilt.

Honestly, I have been blessed so much already, who am I to ask for more? I mean there are much larger needs in the world. There are people living on the streets who have nothing. There are children longing for homes. There are families starving. There are those who are thirsty and hungry and in prison. And here I am asking for another chair for my daughter when she already has a wheelchair and a highchair and a specially made foam positioning chair. There are children with special needs similar to my daughters in third world countries who would love just one of those things.

Ask. Ask. Ask. Ask.

There’s that word again. So, here I am. I’m asking, not for a zipzac. I’m asking for something much more. I’m asking you to listen. Take a second to listen to your heart, to that still small voice inside. What’s it saying? What makes it beat a little faster in sympathy?

When I mentioned children longing for homes did your breath catch in your throat? Listen to that and respond to it however you can.

When you hear about people living out in the cold without shelter, without home, does it make you shiver? What is that leading you to.

Do you ache for the hungry? Hurt for the sick? Have a tenderness for the lonely?

Does your heart go out to those with special needs like my daughter? Could you help with those who face the same problems in a very different environment? If that is your heart there is an organization I know of starting a special needs school and providing much needed support for special needs children in Africa. Maybe your heart is pulling you to partner with them.

Ask. Ask. Ask. Ask.

So, this is me asking you to listen. And respond wherever your heart is leading you today.

Ask. Ask. Ask. Ask.

And maybe, just maybe, my beautiful daughter is exactly who pulls on your heart. Maybe you want to be the one to give her abundantly more than she really needs or can ask for. If that’s the case we would love your help to raise the $1,100 dollars for a Zipzac. If you are interested in that there’s a link to my paypal at the bottom of every blog post. We would be so grateful.

Rejoicing in the journey,
Bethany

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On Venting and Needing Understanding

Sometimes as a mama to young kids you just need to vent. It’s therapeutic.

You need to call up your girl friend, or your sister, or your mom, or send out a holler to all of your social media mama’s and tell them the horrible thing your toddler just did.

“He colored all over the wall!…With PERMANENT marker!”

“She smeared a chocolate all over the couch.”

“He threw a tantrum right in the middle of the grocery store. Everyone was staring.”

“She flushed a brush down the toilet.”

Oh, yes, we need to share these things. We need to share the sentences we never thought we’d say, the experiences we never thought we’d have, the things we never thought OUR kid would do.

We do it partly to express, to let off steam in a safe place, but there are other reasons we do it too.

We do it to for the encouragement. Like an athlete who is feeling weary and worn and looks to the crowd, because they need to know the crowd believes in them, you look to your crowd.

But, I think mostly we do it for the camaraderie. We need to know we aren’t alone. We need to know that others have been in this same place as we have been. We need to hear that they are in it too, or that they got through it. We need to feel like part of a team.

Or maybe I should say those are reasons why I vent about mama frustrations.

Sometimes I choose to share some of those frustrations on social media, usually Instagram since that feels more like an actual community to me. But sometimes I do it on facebook or twitter too. I do this because I want my social media to be an honest and holistic picture of my life and that means not just sharing the good stuff. It means allowing others to enter into the struggle with me. It’s the same way I approach this blog.

But, lately I’ve run into a problem with sharing and venting, especially online. I’m finding that sharing and venting about Sage doesn’t result in connection and camaraderie and often gets taken in a completely different way than sharing and venting about my son.

The other day I shared about a difficult day I’d had with Sage throwing lots of tantrums. I got lots of very kind responses, but something rubbed me wrong about the way people responded. I couldn’t put my figure on it until I realized how different the responses to my venting where from the responses to my venting with Thad when he was a toddler.

When I shared about a difficult day with Thaddeus I got some encouragement and a few “praying” responses, but mostly I got commissary and even humor.

I got “Oh my goodness that is too funny!”

Or “oh I know! My son did that too!”

Or “ugh I hate when that happens!”

Or “today my daughter did…”

I don’t get that anymore. And I guess I can’t. I mean it would probably be a little weird, and almost hurtful, if my friends with normally developing children tried to say that they know exactly what I’m going through. They don’t. So they don’t say that they do.

Instead I get pity and prayers.

It’s good intentioned, but it’s not really what I want in those moments. I want understanding and camaraderie.

And humor…I could go for some humor.

 

Rejoicing in the journey,
Bethany

 

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A Newly Felt Grief

It’s been nearly two and a half years since my daughters diagnosis and sometimes I feel like I’m only just now starting to process it. And I’m struggling.

Maybe it’s because we are only just now starting to feel the effects of her diagnosis. I mean for so long her diagnosis didn’t mean much more to us in our day to day life than an extended baby season. That’s changing now.

Maybe some of these feelings were brought on by traveling and imagining what that will mean for us in the future. It was difficult and challenging and will only become more of a struggle as she gets older.

I don’t really know what brought it on but I’ve cried a lot in the past three days. Over what could have been. What should have been.

I remember laying in bed late at night one night soon after Sage’s diagnosis and telling Bryan, “She is God’s grace to us. And I wouldn’t change her.”

I still believe that she is God’s grace to us, but lately I would change her if I could.

If I could magically heal her and make her normally developing I would.

I wish. I long. I desire so much lately for my daughter.

I wish that she was a normally developing almost three year old. I wish she was making mischief and getting into trouble. I wish she was starting to play together with her brother and other kids and learning how to make friends. I wish she was talking and walking and jumping. I wish she was eating real food and sleeping through the night like a normally developing almost three year old. I wish other people felt comfortable watching her and that I felt comfortable leaving her with them like I would if she was a normally developing two year old.

I wish I could change her.

And then I feel completely overwhelmed with guilt for having that thought, that desire.

Mostly though I just feel sad.

And I think that’s ok. It is sad.

This sadness, this sense of loss, these things are grace to me too. It is in these that I learn to lean. It is in this pain that I learn to look to the God who made my daughter and loves her even more than I do. It is in this that I learn to trust. And it is through this that I receive grace upon grace.

I imagine that I will probably need to cycle through this grief multiple times, again and again, in the coming years. I’m sure there will be days of gratitude, days when God seems near, and then there will be days like these. Days when all I can do is fall on grace, call out to love, cry, and then open my hands to receive.

Rejoicing in the journey,
Bethany

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