Deepest Suffering and Deepest Joy

                                         

This is to all my brothers and sisters in Christ and anyone seeking to know God and see through His eyes.

It's been on my mind a lot lately, and I needed to share it. Hopefully this will help, encourage, or push someone on in their life's journey. It's about being Jesus to a broken world. It's about sorrow and joy and empathy and action.

Lately I've been talking to a lot of beautiful warrior moms in some TSC forums...many of them just receiving the devastating diagnosis of TSC for their child...or TSC and epilepsy....or TSC and epilepsy and autism...They're working hard for their babies...researching, asking questions, praying, crying....Exasperated, they ask about how to get their baby to eat, who can't seem to figure out eating solid food....or how to get their child to sleep, who seems to be the walking (and jumping and screaming) definition of insomnia. They ask about seizure meds and diets and side effects and surgery. About heart tumors and meds, about how to get their child to stop biting/hitting/screaming/raging when nothing else works. If they can know how severely their child will be affected by this disease. About clinical trials and medical marijuana and the best hospital or TSC Clinic or doctor for their child. I've read countless comments that says "I HATE TSC!" or "I HATE EPILEPSY!"

And i read these online conversations and I cry.

I remember...that I've been there. And that I'm still there. And as much as I wish I could take TSC away from my daughter, I see the beauty in the midst of the pain, and I see how I'd still be blind to much of the world's suffering and still living in my little bubble.

I've come to a point in our journey when I might not like TSC or epilepsy or Audrey's meltdowns...but I love how strong it's made my daughter at only four years old. And i love how strong it's made me. I love how strong it's made Asher. I love the compassion it's taught to my seven year old son who, when Audrey's raging, and I'm at wit's end, says,

"It's okay mom, I got this. I can get her calmed down...." And he asks Audrey if she needs a hug and if he can read a book to her. And continues to reach out to her, unshaken, when Audrey attempts to punch him, through tears. What seven year old boy does that? Mind you, it's not always like that. They have their fights. He does things to antagonize her and she steals his stuff, like every other group of siblings 2 years apart in age. But then there are those times when I've battled Audrey to nap for the fifty billionth time, and i fall onto the couch exhausted...but unaware of my own exhaustion because it's become my normal....

...and Asher hands me a glass of water, puts his arm over my shoulder as if he's comforting a friend, and says, "Rough day, mom?"

I ask him why he said that, since I think I'm fine....

"Well Audrey was having a rough day and she was hitting and screaming and I know that's hard on you."

Yall, I'm not making this up. This conversation with my 7 yr old son actually happened last week.

My kids cuddling during my daughter's EEG

And I love that when I take Audrey to the doctor, or the grocery store, or Chuck E Cheese....she strikes up conversation with anyone and everyone.... She saunters over, cool as can be to complete strangers and says, "What's up?" Gives them a high five and flashes her dimpled smile. And in a city with so many lonely people and perhaps the lowest levels of hospitality I've seen in any city anywhere, Audrey is not afraid to make connections. She's not afraid to hug the boy at the ophthalmologist's who has cerebral palsy and a walker. Or the older boy in the same room wearing a helmet. Or the almost-7 foot young men playing basketball at the park.

And I realize, I'm not scared for her future any more. At least not hourly, daily. I don't know her future...I don't know if her seizures will come back with a vengeance. But even when she had a ten minute long seizure, completely out of the blue that necessitated calling 911....I realized I wasn't nearly as scared over that as I would've been a few years ago. 

And I'm thankful that though the doctors said she'd never walk, talk or make eye contact, that she is running and telling me off when she's mad and carrying on conversations with strangers at Chuck E Cheese. And yet even though we're doing okay and she's beating the odds, I still cry. But not out of fear. My heart breaks.

I want to encourage and comfort other moms as an angel woman once did to me by saying they'll find their new normal. They need not be petrified forever. My deepest desire is to help others who are where I was not very long ago.

Here's what I've learned: if you want to work hand in hand with Jesus in this world and do kingdom work, you have to see the way God sees. You can't numb the feelings and you can't turn a blind eye to the suffering in the world. If you really ask God to see this beautiful messy broken world  the way he sees it, apathy isn't an option. You will experience greater joy at the seemingly insignificant, and you will mourn deeply for complete strangers.

I used to wonder why Jesus wept when he arrived at his friend Lazarus's grave...when he knew his friend was going to die, and he knew he was going to bring Lazarus back from the dead.

Because Jesus wasn't weeping out of fear. He was weeping because he felt the pain and brokenness of this world. Because death was never supposed to happen. Ending of relationship (through death or divorce or miscommunication) was never supposed to happen. Seizures and tumors and sensory overload and pain were never supposed to happen. Sin (which is more than people "doing bad things" but rather the entirety of the brokenness of this world) was never supposed to happen. Jesus grieved this. He cried. And he stepped into the ugliest parts of it and he felt it and he faced it and absorbed it and that's where death was defeated. And while the war is over, the battle rages on, and God asks us to join in. The beautiful thing is that when you face the ugliest and scariest and most unjust pieces of this life, you see beauty and joy like never before. I promise. You'll see things other people can't see.

And the world needs you to do that. Please don't be afraid to enter into peoples' messes. Don't be afraid to help the homeless, the divorced single mother, the veteran with PTSD, the woman with alzheimers who treats you like dirt, the suicidal teen boy struggling with his sexuality. Don't be afraid to foster children with no parents, even if their mothers did drugs while pregnant. Don't be afraid to smile and say hi to a child who can't make eye contact with you. Wherever God opens your eyes to the suffering in this world, enter into it in whatever way you can. They will be blessed, you will be blessed. And this is how God's kingdom comes to earth.



I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. John 16:33

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. James 1:27