I had it all planned out.
The nurse would call. I’d fall to my knees as tears of joy streamed down my face. The weight would lift.
Christmas would be a time of glorious celebration, full of thankfulness and family.
I’d write a happy post about all the lovely things God taught us during this year of waiting.
His birthmark would always be this visual reminder to me of what could have been.
Except what could have been, is.
My son has Sturge Weber Syndrome.
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It was the doctor that called.
I tried to tell myself that it was him calling because I had left an impatient message on his machine earlier in the day. He told me that the MRI revealed four lesions on our little boy’s brain. These lesions will eventually bleed and cause seizures and possibly strokes.
Sturge Weber Syndrome looks different with every individual and it’s so rare that there doesn’t seem to be two doctors that agree on anything.
Some children have so many seizures and strokes that they need to have the halves of their brain separated to even survive. Some never walk and talk. Some have debilitating migraines, some go blind, most have learning disabilities.
And every milestone they achieve can be taken away at any moment by another seizure or stroke. It’s progressive and it’s vicious.
We’re left with no cure and no clue.
(Photo credit Kelly Wendt)
I’ve been writing a journal to each of my boys since before their conception.
(Alright, alright. Our middle son was a surprise, so I had to play a little catch up in his journal!)
In them, I share my hopes, dreams and prayers for each child, as well as sweet moments that I want to treasure forever.
Because of my son’s birthmark, I knew he would know what it’s like to be different, to be judge, and unfortunately, to feel rejected. But I’ve always prayed that God would use that pain to draw T. J. to the unconditional love of Jesus. And that he would, in turn, share that love in tangible ways with others.
I pictured him caring for the outcasts, serving the lowly, touching the untouchables. I pictured him as a man of unassailable character that wouldn’t be afraid of what others thought or care if anyone took notice his efforts. I pictured him and his future wife raising a family of compassionate children that would turn the world on its head.
I didn’t picture him with Sturge Weber syndrome.
And even now, I still can’t. Maybe it’s denial, but mostly it’s because I just don’t know WHAT to grieve over.
It’s so weird to have no idea if my son will ever be able to have a conversation with me. And to know that all the abilities he does have could be snatched away without warning. Everything is so fragile and fleeting.
This all happened the week before Christmas.
Our Christmas was not jolly or magical or merry.
When we first found out that SWS was a possibility a year ago, I wrote about my struggle to trust God’s goodness, no matter the outcome.
(T.J. less than three minutes old.)
I was trying to hold fast to the truth that God has entered into a covenant with me, one that promises to work everything out for my good.
Not the kind of “good” that promises an easy, pain-free life.
I knew that. But I knew that even when tragedy strikes, as a child of God, that that circumstance is truly what was best. I didn’t know how that all worked out, but I was willing to rest in that paradox.
Well, here we are.
Our hearts are broken. The tears flow freely, even in the Target parking lot. I wake up countless times a night with the ice cold terror of the unknown.
So is this good? When the doctor called, did we get “good” news.
Here’s why I say, with trembling lips, “YES”.
Because God is with me. He is so very present with me in this pain. He is not far off. He is not a theory, an idea, a religion.
He is my God, my Father, my Savior, my Friend. And he’s here.
Christmas was a celebration that God is with us. He left perfection and peace to enter into the hell that is this life. His advent, his coming, is the only reason my family has hope. And we long for his second advent when he makes all things new.
The psalmist had a similar crisis of heart in Psalm 73. He raged that evil people seemed to have nothing but happiness while folks of character suffered through life. The unasked question is, “Is God really good to me?”
Eventually Asaph declares,
23 Yet I am always with you;
you hold me by my right hand.
24 You guide me with your counsel,
and afterward you will take me into glory.
25 Whom have I in heaven but you?
And earth has nothing I desire besides you.
26 My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.
27 Those who are far from you will perish;
you destroy all who are unfaithful to you.
28 But as for me, it is good to be near God.
I have made the Sovereign Lord my refuge;
I will tell of all your deeds.
So as I sit here with a life that has been turned upside down, the only sense I can make out of it is this.
His nearness to us, is our GOOD.
Ha! The future.
I don’t even know if we’ll make it through the day without a stroke that could take my son from me.
I really don’t know much.
I know two things.
I know life is going to be hard. And I know God is with me and my whole family.
He will be with me when I helplessly watch my son convulse on the floor.
He will be with me as I watch T.J. struggle through physical therapy and school tasks.
He will be with me as I battle insurance companies and nurses and mounting medical bills.
He will be with me as I feel crushed with guilt over giving all three of my sons the attention and love they crave.
He will be with me as T.J. goes through all the normal pains of teenagerhood compounded by the anguish of mental and physical disabilities.
He will be with me when I go through the gut wrenching task of choosing someone to care for T.J. when I no longer have the ability. (Pray I live to be 99 and one of those marathon runners.)
The nearness of God is my good. And he will be more near to me in this life of hardship than any other path that could have unfolded. Our whole family will experience the presence of Christ more. And even though I had other plans that I thought were wonderful and good, I will choose to be joyful about God’s best plan for our good.
He has it all planned out.
Want to BE the GOOD?
As we go to tons of doctors and try and formulate a medical strategy, we’ve mostly been told that we have to wait and see.
Well, I don’t want to sit around doing nothing. When I’m hurting, I’ve been taught to serve those that are hurting more than I am.
So that’s what we’re going to do, TOGETHER!
I’ve started a GoFundMe campaign to provide a lifesaving surgery for a child in poverty overseas. I’d be so honored if you prayed for this precious child and donated a couple bucks. Share this post to get the word out!