Addition

Rearranged by God’s grace and Kernicterus, Miriam works to help the world see the bright boy in the body that doesn’t work, to raise his 2 busy bee little sisters, and of course have something, anything, left for the husband she adores! You can find her over at A Rearranged Life.

I’ve never loved math.  I stumble around numbers.

And yet…there is a part of me that has never stopped adding. I did this before I could count.  I counted negatives.  I measured out injustice.  “Hey!  He got a bike for Christmas and I just got clothes!”  I wasn’t the most miserable kid alive, but when things went wrong I didn’t pretend everything was peachy.

Looking back, I see how the counting revealed expectations and entitlement.  Forks in the road were hard.  I dug my heals in when God didn’t provide what I wanted  things like:

going to the college I wanted to go to,

getting the job I wanted to get,

My good friend living to old age,

having the honeymoon that I had planned (it was a disaster that might make you laugh and cry…or throw up!   Let’s just leave it at…we never made it to the Bahamas!)

Then Kernicterus came.  Picket fences fell.  When he was just days old, my little boy had lost much.  I held close to Jesus.

In those shattered days, I wrote:

“You have filled my heart with greater joy than when their grain and new wine abound.”

– Psalm 4:7

There were so many abilities lost.  …hearing, speaking, walking, writing, eating…

But I knew there was greater joy to be found – greater than the merriment that comes in prosperity.  This had been in my head long…but now it was time for it to start working it’s way to my heart.

No easy task.

I sought The Lord.  I grieved.  I cried out in prayer.  Yet that old practice of adding negatives was is always begging to be done.

And this is no overnight journey.

It’s not like that.

I’m grateful for his patience as I grapple with these truths.

In the early days, my goals were: survive, seek God, pray, bear through the hard things, trust Him.

Good goals.  I amend them with time.

_______________

Last year, in a ploy to get the UPS man to pick up a package, I ordered her book.  A friend had suggested it many times, and finally, I ordered it.   One Thousand Gifts, by Ann Voskamp.

It took me a couple nights to get through that first chapter.  Tears came too easily. The story isn’t mine, but those raw emotions, the living on edge, the shadows of grief that never slip away – I know those.

In the months that followed, Ann’s words echoed the scripture:

“Enter His gates with thanksgiving, His courts with praise!”

Ann’s friend challenged her to write down 1,000 gifts, and her journey to give thanks, in the hard things, in the broken things – it became her book.

Her challenge came across the continent to me loud and clear.

Only, I’m not sure I wanted a challenge.  Didn’t I already have enough?

Could I do this?  In all of the “special” of our life, could I find the time?  In the grief that peeks it’s head out often?  Fight for joy?!

I took the challenge.  I had to.

If Christ gave thanks in the moments before he offered himself on the cross, if scripture commands over and over to give thanks, should adding negatives be my focus? Is mere survival the real goal?

How do you fight off the old math?   When the tantrums won’t end?  When work is scarce?  When bills add up?  When you have nothing left for your spouse?  When friendships are hard?  From the ER?

I’m not sure it will ever be easier to add positives, but it will always be better.  It will forever be the path to joy.

I MUST WRITE IT DOWN TO SOAK IT IN.

I have to put words onto something…a computer screen, paper, my phone…I have to record these “thanks” to condition my heart to see…really see them.

Without taking note, I pass by much too quickly.  I forget that the gifts were ever there. Surely the painter sees the flower better than the passer by?   – takes more joy in the object?    Remembers the lines and shadows with more clarity?  The photographer must enjoy the landscape more than the tourist. 

Giving thanks brings joy.  It brings delight.

Thanksgiving is a call and one we must take seriously if we want to be happy Christians.

If you take the challenge, if you take time each day to write down a few items you are thankful for a day – it will change you.

It will put you on your knees.

It will grow and feed the joy that comes from Him.

You will learn to enter his gaits with thanksgiving.

This is a challenge every special needs parent needs…every parent needs…every person needs!  Challenge your heart to sing his praises – in the hard – in the weary – challenge your heart.

One thousand times a day I choose to count the unmet expectation or the gift.

I choose whether to add up the negatives or sing praises.

I choose joy or misery.

Do I make the right choice half the time?

I need to lay low.  Gifts flow down.  Grace flows down. I’m in no position to receive his good gifts unless I bow lower and look more closely at His “good and perfect gifts.

His word sinks deeper from head to heart when we bow low.

I’m not sure my eyes would be so open to the joy of syllables uttered together – if I didn’t know the pain of seeing them taken away.  Would I cheer to see my boy swipe everything off the counter without wondering if he would ever have volitional movement?

There are fathoms of joy that I didn’t know existed until I fell into living with loss.

Expectations winnowed away, all is gift.

All is grace, even and especially in special needs.

When I count gifts, there’s not so much of me left to add the negatives.  “Greater joy” floods in warm when I make room for it with gratitude.

Do you count?  What is your default posture? 

The LORD is my strength and my song; he has become my salvation. He is my God, and I will praise him, my father’s God, and I will exalt him.

-Exodus 15:2

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Grace and Peace

Today’s post comes from my lovely co-leader, Kaylee Page.  Kaylee (and Dan) have one daughter, Miss Bella, who lives in a world of FPIES, EOE, Delay in Gastric Emptying.  Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while sitting through doctors’ appointments.

FATHER, IF YOU ARE WILLING, PLEASE TAKE THIS CUP OF SUFFERING AWAY FROM ME. YET I WANT YOUR WILL TO BE DONE, NOT MINE.  Luke 22:42

Jesus knew “the plan”.

He knew it was a’gonna happen.

So…. I wonder if by asking for the suffering to be taken if he was asking for a different plan or if he was just asking for the suffering and emotions that comes with going through the plan to be relieved? Sometimes God graces us with this unbelievable amount of peace and joy (beyond the circumstances) and sometimes, no matter how hard we try, we are left broken, wrestling, anxious, grieving, mourning, confused – the feelings associated with “the plan.”

(Some may argue that the Holy Spirit wasn’t “around yet” to give this peace so I wonder if maybe Jesus’ plea was maybe the first request for the Holy Spirit to come down and be with us through it all in this miraculous, inexpiable way! Maybe?)

*Sigh*

It’s amazing to me, how different life can be, from what we dream and plan… hope for… expect. It’s earth-shattering some (even a lot of) days. And so hard to embrace the God’s message of finding joy, accepting that this was just His plans, to “take comfort and rest in Him.”

Is this message for me? What if finding joy was different before becoming a mom? What if joy these days means that the only thing I can do is breath? And that breath, well it’s the only joy I can muster up, but I’ll take it. Today I breathed a breath full of peace (even if just one breathe, so be it, I’ll take it!)

Oh I trust God. I do. No doubt about it. And I get that someday I’ll get a “well done!” But, right now. Today. I’m tired. I’m so excruciatingly and painfully tired. In every way possible — my mind, body and soul is worn out.

As mothers of children with special needs we suffer a great deal – even if we wouldn’t change the story – or maybe we would – either way, we suffer.

I wrestle, struggle and “suffer” — with the fact that caring for my daughter isn’t just a “get through this today and tomorrow will be better” (like a cold or the flu). She may outgrow some of her issues but it will in some way affect her the rest of her life. That thought alone is exhausting! (not to mention how it affects our every day life in every way – we can’t just go out to eat, go on trips without packing every little food item she may need – and OH THE VOMIT. The vomit. It’s all the time. I live in fear of the next episode. A simple cough rears my head – every time.).

To all you (in) able mothers out there with kids with special needs – your child has impacted your life in countless, absolutely countless ways. Take a moment and speak out load those ways! And let me tell you, it is okay, in face you have all the permission in the world to let tears flow as you name those ways.

You. Are. Not. Alone! I’ll admit, it sure feels lonely though. I think meeting other moms who get it is so comforting — but still — there is a void, where you are the only one who knows exactly and completely what it is like to be your child’s mom. You know what every second, every moment, every breath, every appointment, every milestone – every setback, every doctor appointment, therapist and teacher appointment and meeting…

You know your child. And only you know your child like you do. It’s beautiful and a bit overwhelming both at the same time.

Take this cup of suffering? Jesus cried. Give me peace. Give me joy. Guide, help, assist, lead, create in me a steadfast heart despite the fact I am hanging on a cross… OH GOD! Help me. Hear me.

You too? God, take this suffering? Take this fear, this worry, this sorrow. It is different than I planned. But please, guide me, help me, assist me, lead me. Create in me a steadfast heart in all of this. Oh God, my God! Help me. Hear me….Hold me! Because hanging hear, going through this, I need you. I desperately, wholeheartedly, need your strength to press on and through this life.  (Amen).

HE TOOK ME HOME WITH HIM FOR A FESTIVE MEAL, BUT HIS EYES FEASTED ON ME!  Song of Solomon 2:4 MSG

I was praying for a friend whose precious child has special needs. I asked God what He would want to say to my her. The verse Come to me all who are weary and I will give you rest came to my heart.

Almost comical, no? This would be the verse He gives me. We, mother’s of kid’s with special needs, are tired and need rest — but I’m not sure we always allow ourselves the grace and space – the permission really – to be tired.

But then I also got the phrase Let my face shine upon you. I thought and prayed more about it on my drive into work that day and I got this feeling that God wanted my friend to just basque in His love.Sort of like sunshine warming her face. Eyes closed, face up to the sun. Comfort. And I felt like He wanted her to know that she didn’t and doesn’t have to earn any of this. That he just really deeply desires to give this gift of rest and warmth to her.

Praying for my friend made me realize I needed the same things.

Laid, I think he wants to illuminate us with his love.

Depressed? But not like any sort of depression you’ve felt before.
Tired? In ways you can’t explain.

I get it. The way you feel. I totally get it. Not exactly like you experience it, but I still get it.

The therapy.
The worry.
The tears.
The sleeplessness nights.
The paying of bills.
The meetings to inform and educate.
The endless phone calls to schedule the next step.
The obsessive thinking about it all.
The desire to feel alive again – but the awareness you’re too tired to try – thus, you wonder if you do desire it.
The awkward conversations.
The marriage that often takes a back burner (even though you don’t want it to)
The second look at your reflection and bags under the eyes.
The desire to re-invent yourself.
The wishing it were different, somehow, just different.
The nothingness that exists in this season.

LOOK, I AM DOING A NEW THING.  Isaiah 49:10 CEB

I’m confident that He will resurrect himself in us again – even if it’s not for a long time. Not one ounce of our journey and our story will be wasted in his kingdom. No matter how exhausted, worn out and frustrated we are here, I’m confident it equals strength, beauty and character in another world – in his Kingdom, where there will be no weeping or mourninganymore.

Friends! Today, this very moment… May you stop. May you tilt your face to the sky. And may you allow him to permeate every ounce of your being. May his love cover you, coat you, embrace you,penetrate deep into your heart, breathe life into your soul, steadyyour mind and soothe the stormy waters.

Yes, may his face fully shine upon you today.

Grace + Peace.

Today is a BIG day.

HUGE day.

A couple months ago, Dayspring’s (in)courage website put out the call to women who were up for leading an online community.  There were lists of ideas… community for empty nesters, moms of teens, single women… but none for moms of special-needs kids.  I sat there staring at the screen and wondering what in the world kind of sign that was… and then I read the words “is social media one of your love languages?” Fine.  Alright.  I’m in.  But I’m not doing it alone.  So I called Kaylee, who I haven’t seen in person since we were both single and singing at Mars Hill. Now we’re married and each have a child with a fat medical file.  Kaylee said yes, and here we are.

The complete list of communities HERE.  There are online Bible studies, blogfrog groups, facebook groups, high commitment and low committment groups.  All kinds of groups.  It’s a way for busy gals to plug in, meet some new women, and share their stories. Maybe you need that right now.  Maybe you know someone who needs this right now.  The first session (for those in a time-sensitive group like a reading study) goes through December 2.  After December 2, you can continue or move on.  No big.

Kaylee and I are HERE.  We named our group (in)Able or (in)Ablers… because our lives often involve the opposite.  We want to enable moms… to build them up… to give them (and us) a safe place to talk. The Facebook group is HERE.  Send folks if you think it would be a blessing to them.

You’ve always been so supportive of our journey with Rylie.  I thought it was appropriate to celebrate this step with you, and to ask for prayers as Kaylee and I lead (?) this group for women who so desperately need to be near other women who understand what it is to live in the world of special-needs.  We’re excited and scared!

But, we’re ready.  Bring it.