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.