Gum and a Ring and a Simple Truth for Greedy Hearts (Like Mine)

I turned 48 last week. At this point in our lives, we have 4 adult children: 3 who live independently and 1 in college who spends summers and school breaks at home. That leaves 4 kids at home full-time, and means an inconsistent showing of our kids at family meals and other special events, like my 48th birthday dinner.

For this little birthday celebration, we had 4 of our 8 kids present plus one French house guest. Lately, we've housed several French guests because God put them in our path years ago and the relationships continue to grow. 

This ring, though, is what I need to tell you about, because our Mighty Joe—the brain-damaged 10-year-old—wrapped it up in a piece of black construction paper adorned with his own artwork of a train done in white crayon, and presented it to me after dinner. 

After I dramatically declared my love for the tiny heart with the faux red ruby, Joe needed to let me know how he came by it as my birthday present. 

"Daddy gave me a quarter. I wanted to buy gum but then I saw the ring and bought that for you instead."

Be still my heart.

"If Daddy had given me two quarters, I could have bought you the ring and the gum."

Well, there it is. Honesty. Out of the mouths of babes and all that.

But I often treat God this way, knowing that he's given me a gift to give to someone else, only to turn and wish he'd given me something I obviously wanted from him instead, or in addition to. I'm happy to give to others, but most of the time I think I'd be happier if I got to keep something for myself, as well. I mean, if I'm being as honest as Mighty Joe was the night he gave me the ring with the tiny heart. 

And again, this is why I need Jesus. It's the theme of my life. I wish I could tell you my heart is purer than that, but the truth is, without the perfect heart of the Savior standing in my place, it's just about as valuable as a ring bought for a quarter out of the machine in the grocery store. 

What made that ring valuable was the giver. What makes my own heart and your own heart so is the giver. And his gifts are always, always, always the best. 

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Hope For Parenting the Extraordinary

Before Mighty Joe came along and fought the Enterovirus, I had no real understanding of seizures and medical issues and pretty much anything parents of kids with special needs go through. Joe has fewer "issues" then other kids with brain damage to the extent of his, but we still live our lives in a flux state that has to allow for what happened this morning.

I'm going to spare you the details, but here's what's good for folks without special needs in their homes to know: We parents with these extraordinary kiddos never get to turn off. 

Remember when you had a toddler or two? Remember how you always had to have an ear and an eye cocked in order to know what exactly they were doing at all times? This is the unrelenting reality of the parent of a child with special needs. There is no "off". 

I won't drag you into a pity party because Joe is now 9 and this has been our 9-year reality. It has actually been my 24-year reality because of the older kids and their toddler years that just all smooshed into Joe's life. He's the preschooler that doesn't progress. 

It doesn't end.

I sit with my closest friend-mom-of-a-child-with-special-needs and we spill our frustrations and joys. Kid you not, last night she texted me at 11:30 PM from the ER because her 18-year-old mentally retarded daughter got a ring stuck so firmly on her finger, it turned purple and took an entire ER team an hour to get the offending ring off while she spit in anger and kicked her mother and sister and screamed. 

This morning I texted her that Joe had just finished an 8-minute seizure that showed no signs of stopping until I pushed his heavy body onto its side so I could get the emergency meds suppository administered (that was fun) and watch him come down from the convulsing that left a huge, foaming pool of spit all over him and a sore hand that smacked the wall repeatedly before I got to him and held it down.

Neither my friend nor I know when the next event like these will occur. There is no "off". 

Joe is in the bath as I'm writing this. My day has had to change, from plans to be out and accomplishing tasks to what I can get done while keeping my ears and eyes wide open on him. 

Where is the hope for parents on seizure watch and parents of toddlers and parents of adult kids with the mentality of a preschooler? We're all parenting the extraordinary in one way or another. Where is the hope for me?

Hope always, always, always abounds in the goodness of God. I'm not one for prescribing anything, because I well know after years spent placing my hope in methods and "prescriptions" that the only true hope is in what God has done for us, but if you need a tool of ministry, there is no better RX than the Word of God. Start here?

“ Many are saying of my soul,
‘There is no salvation for him in God.’
But you, O Lord, are a shield about me,
my glory, and the lifter of my head.
I cried aloud to the Lord,
and he answered me from his holy hill.
I lay down and slept;
I woke again, for the Lord sustained me.
I will not be afraid of many thousands of people
who have set themselves against me all around.”

— Psalm 3:2-6, ESV

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After Lost & Found: Mighty Joe's Story

Let's start with Mighty Joe, the baby I found in a coma at the beginning of Lost and Found: Losing Religion, Finding Grace.

Joe will be 9 years old in May. 

Life with Joe is not easy. There is no "off" button. He's perpetually impulsive, impossibly loud, consistently unpredictable, and prone to the regular meltdown. He sits on a ball at the dinner table, smells everything new to him, and packs his blankie in his backpack to school.

If you recall, Joe has six actual holes in his brain, but the two that seem to affect him the most at the moment are the bilateral holes in his frontal lobes. They affect his executive function ability (how the brain organizes all incoming information), seizure activity, and impulsivity. Joe could sit on his hands all day long but those holes in his frontal lobes are going to make those little hands dart out and grab something he shouldn't at any moment. It's hard to be Joe.

But Joe is a marvelous miracle. Someone once told us he isn't, that Biblical miracles aren't that. Whatever. Pick a different word. Joe is a continual tear-inducing wonderment. Will that work? Because Joe has no brain matter in his occipital lobe, and yet he sees. He can't process what he sees at 100%, but he sees. And he rides a bike, jumps off the diving board, and plays baseball on a team for kids like him. He also reads. 

His future is punctuated by a giant question mark. He likely won't live independently. He needs us to be his missing executive function. He lately has so many odd questions about God and Jesus and I can't make him understand even the basic gospel, but that's quite alright. God made Joe, God loves Joe, and God will never leave nor forsake Joe. 

Joe in the PICU, day 2. 

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