Saturday, June 18, 2016

On Ladybug's 2nd Cranioversary

Two years.

Two years since I handed my wailing 2 year old to an anesthesiologist in Texas.  

Two years since I watched her carried towards an operating room staffed with a minimum of 4 doctors.

Two years since I took a Dallas city bus, wearing my 8 week old baby boy, to a Waffle House, while my oldest daughter's scalp was being cut in a zig zag, her never-cut baby hair pulled in many tiny ponytails away from the incision. 

Two years since I ate two eggs scrambled, hashbrowns scattered smothered, and the best coffee on earth, while my little girl's skull was marked, cracking apart at the first incision from the pressure inside, removed, and laid on a sterile field. 

Two years since I sat in the shade of a bus station waiting to return to the hospital, while my little girl's skull was examined for the parts thick enough to be broken in half, so that the pieces could be overlapped to completely cover her brain. Parts weren't thick enough.  They'd been worn thin by the pressure from her brain.

Two years since I rode a city bus back, while my little girl's brain was covered by remodeled pieces of her skull, this time, with plenty of room for her growing brain.

Two years since I sat in that surgery waiting room, watching the screen, waiting, waiting, waiting, waiting... thinking it was much later than they'd said they'd be done.

Two years since I walked to the PICU waiting area and met her two primary surgeons.  I'll never forget asking them, "Did I do the right thing?"  

Two years ago, I was filled with such hope.  Hope that my child would be normal, pain free, that we could put all this cranio and Chiari nonsense behind us.  Hope that she'd no longer need early intervention, hope that she'd have absolutely no need of special ed, hope that she would be... normal. 

One year ago, I didn't celebrate inwardly as I thought I would on that day two years ago.  Some things had improved, but there were still things that I thought would magically go away... and they hadn't.  I sat staring at another MRI, wondering if another surgery would cure my child.  Fix her.  Make her normal.  And I dreaded the evaluation that was coming just 7 days later. Dreaded what they would say about my child that I'd moved heaven and earth for...

Today, I celebrate.  Today, I am again filled with hope.  Not a hope that my child will be normal.  She's not normal.  And I wouldn't change that for anything.  It's what makes her special.  She thinks differently than I do... than most people do... but in all honestly, she thinks better than most people do.

No, today, I am filled with hope, because hope is a gift from God.  It's not something I can muster up.  But it's something I can claim.  So this is my prayer for my oldest, my broken and mended tea cup.

 do not cease to give thanks for you, remembering you in my prayers, that the God of our Lord Jesus Christ, the Father of glory, may give you the Spirit of wisdom and of revelation in the knowledge of Him, having the eyes of your hearts enlightened, that you may know what is the hope to which He has called you, what are the riches of His glorious inheritance in the saints,  and what is the immeasurable greatness of His power toward us who believe, according to the working of His great might  that He worked in Christ when He raised Him from the dead and seated Him at His right hand in the heavenly places,  far above all rule and authority and power and dominion, and above every name that is named, not only in this age but also in the one to come.

Saturday, April 2, 2016

On World Autism Awareness Day

It is my family's first World Autism Awareness Day.  But I'm not lighting it up blue.

In a way, it seems strange that this is the first time we're a part of this day.  It feels like autism has been a part of lives far longer than 10 months. But that's because it has.  It's been a part of our lives for 4 1/2 years.

What I wish parents facing diagnosis, avoiding diagnosis, or dealing with a recent diagnosis could realize, is that a diagnosis doesn't change their child.  We have only officially been an autism family for 10 months, but we have been an autism family since the moment my oldest daughter was born.

From the moment they placed her in my arms at a couple hours old, and she didn't lock eyes with me, we were an autism family.  My first acknowledgement of it came standing next to the changing table when she was nearly 8 weeks old, telling my husband "no one told me she wouldn't pay any more attention to me than she does to a wall.  It's like she doesn't even look at me.  I'm just an object."  First time mom, I didn't know that not all babies were like that.  I thought people had just made up that magical moment of your newborn gazing into your eyes.  Until I experienced it just 11 months later, when my second daughter was placed in my arms and opened her eyes and looked at me.

I still feel like an object.  I commented recently, one early morning as she ran right past me to retrieve her blocks, "I'm just the thing that opens her door."  Every night we hug and kiss and say "I love mommy" because that's our bedtime ritual.  But it's motions, obedience.  Tiny arms entwined around my neck squeezing tight?  That comes from the younger two.

Does she love me?  Probably.  In her own way.  And that's the way it is with everything.  She does things in her own way.  In her own time.  It doesn't fit anyone else's definition.  It doesn't fit anyone else's timetable.  She makes her own lines, and then colors in them. She has her own world, and it doesn't really line up with everyone else's.  She's a square peg in a world of round holes.  She marches to the beat of her own drum.  She sings in a key all of her own.  Loudly.

So why no blue?

For one, my daughter is just that... a daughter.  A girl.  And continuing to focus on autism being a blue diagnosis, a boy diagnosis, is a disservice to the many girls who struggle.  Girls hide the symptoms better, and normal boys can sometimes be misdiagnosed by untrained doctors whose ideal boy is a girl.

But the biggest reason is that the organization behind Light It Up Blue is focused on finding a cure.

My daughter does not need a cure for her autism.

A cure for the Chiari.  Absolutely.  Please. A cure for the Crouzon Syndrome.  I'll take it.

But leave her autism out of it.

She's not disabled by autism.  She just thinks and processes differently.  And thank goodness for that.
She's intensely logical.  She could care less whether the snow likes her or not.  She asks why it's funny to throw whipped cream in someone's face. She finds patterns, sees the world in numbers, and she is not going to be hoodwinked by a politician who sounds good but has no numbers to back him up. Different perspectives are valuable.  Why would I want to "cure" that out of her?

So I don't "feel" loved by her.  So what?  Love is so much more than a feeling.  She reminds me of that every day.  She does not inspire warm fuzzies in me.  Trust me, when you're dealing with a child having a meltdown, or covered in feces at an age long past the cute butt stage, there are no warm fuzzies.  But love is an action.  It is fixing food, putting it on the correct color plate, cutting it in the correct number of pieces.  It's learning to turn socks inside out so they don't feel "tight" on toes.  It's building an indoor treehouse so she has a place to be alone.  It's correcting speech over and over until strangers can understand her. It's protecting her routines.  It's fighting for medical care.  It's analyzing MRI's and CT's, changing bandages, educating nurses.

It's being okay with the first morning greeting you get being: "Elephants live in Africa.  Africa is a long way.  I'll fly in my purple rocket ship all by myself to Africa to see the elephants.  There are chips and vegetables in my rocket ship.  Cucumbers are vegetables.  I'll use a knife to cut the cucumbers into ten circles.  I'll be careful with the knife.  Eh eh eh elephant.  Elephant starts with E. Fff ff ff frog.  Frog starts with F. Ggg gg gg G.  What starts with G?  Grape starts with G.  I like grapes.  Can I come out and eat grapes?"

It's looking at this brain and simply marveling at the way it works. Even if it doesn't work quite like your own.

Saturday, February 13, 2016


Disclaimer:  I have never been on a mission trip, either local, domestic, or foreign.

I'm going to make a bold statement.

Short term mission trips are the Christian high.

Since I have never personally been on a mission trip of any sort, I am basing this opinion solely on the descriptions given by my many friends and acquaintances who have been on them.  Words I've heard used repeatedly include "amazing,"  "incredible,"  "life changing," "transforming."  They talk about the people they got to see converted, the testimonies of people who have so little, how much they felt led by God to go, how much they depended on God during the trip, how close they felt to God while they were there, how great the worship and prayer was.  And often, how much they want to go back.

Mission trips, I believe, are valuable.  They are worthwhile.  They bless the people they serve, they bless the people who go, they make a difference.  I'm not challenging that at all.  I would like to go on one some day, with my teenage children.

But in all honesty, I think an equally difficult "calling" is to stay behind.

It's easy to give your testimony to strangers.  Not that it doesn't take guts, not that your voice won't tremble or that you won't be nervous.  But all those strangers know about you, is what you chose to tell them.  They have no history with you.  They have never had you cut them off in line, or heard you say something hurtful about someone else.  They have no future with you.  They won't see you next week chewing the cashier a new one because she overcharged you.  They won't see your reaction to a neighbor complaining about your dog barking.  They won't witness the cold anger when your spouse forgets to bring the ketchup to the picnic and the kids refuse to eat their burgers without ketchup.

It's easy to appear "spiritual" for a week or two.  To spend time in prayer when you have morning and evening devotion time set aside.  To follow God's leading for each day when you have no 9-5 job to go to, no kids to shuttle to school, no household maintenance to do. To help others when that is all you're there to do.

But when you're home... when you're in the day to day drudgery.  That person in the parking lot that can't get their car to start.  But you're running late to work because they never schedule enough workers and the person in front of you wrote a check for $4 and you just need to get there with your tray of donuts because you forgot it was your day to bring snacks to work and your wife is mad because you didn't mention this till 9:30 the night before.

That kid that is so loud and bouncing all over the place but you have so much patience with and so much love for because they have nothing and are in an orphanage and you're there to serve.  But when you're home... and it's your kid.  And they know better.  They have so much.  So many advantages.  And they are on your last nerve.  And they are angry because their pj's won't zip exactly right and they yank them off and throw them at you and the zipper hits you in the face.  And you're tired, because you've battled this kid all day, and you just can't handle one more fit.

I'm not saying people who go on mission trips are awful people when they're home.  Not at all.  I do think it's important to realize that God has us in the here and now for a reason.  I would love to go to an orphanage and love on some kids.  But right now, I can't do that.  It's not my time.  I am to be here, loving on my own kids.  And it's hard.  It's SO hard to love on my kids right now.  I'd rather go love on some under-privileged kid, because that'd be a vacation to me.  But right now, I have a job to do, here.

I have a mission field in my own home.  Because my kids watch my every move.  They see my attitude.  My love is how they understand the love of God.  That is a very weighty task, to model the love of God, day in and day out.  It'd be easier if I only had to put up with them a few weeks. But I am here for the long run.   And it's tough.  Think of how many hours a parent puts in, in exchange for the salvation of their children.  The training, the discipling, the repentance prayer that reassures you but that you can't just rest in and say "well, they're saved now so I'm off the hook."

This day to day... it's not glamorous.  It's not exciting.  It's not exhilarating. No one really wants to hear about it. It doesn't give you that high, that feeling of "wow, I'm really making a difference here!"  Or even a "wow, I'm so close to God right now, this is awesome!"  Sometimes, maybe, you feel that way.  But most of the time, you just live.  You go about the mundane, because God has called you to the mundane.  And you do it to the glory of God.  Even when it doesn't feel like it.

Tuesday, January 26, 2016

Hard Lessons

Parents want to fix things for their kids.  They cry and we want to make it better.  We rub sore gums and give frozen fruit and try amber necklaces for teething babies.  We kiss skinned knees and put on special band-aids.  We find missing toys and sew torn lovies.  We mediate sibling squabbles and come back to them in the nursery when they just can't be consoled without us.

One of the hardest things I've had to do as a parent, is sit down in front of my crying child and tell her, "I can't fix this.  I don't know if anyone can fix this.  I'm trying, the doctors are going to try to help, but it might not work.  You're just going to have to ask Jesus to fix it.  And He might not.  He might want you to learn to keep going and live life anyway."

She's four. 

Four years old, and mama can't fix the problem.  Cause mama doesn't know what the problem is.  And one of the ideas mama's come up with for what might be causing the problem means the solution may be worse than the problem. Wiggling world or a 6 inch incision down the back of her neck?

We've faced things with this child.  I've fought battles on her behalf and won. I knew what the problem was and I knew how to fix it.  I couldn't be the one to actually cut her skull apart and piece it back together, but I knew that it needed to be done, and I knew who could do it. 

And sometimes, I look at that season of testing and fighting and arguing and praying and think God was just preparing me for the next thing.  

Now, I'm praying she has fluid in her ears.  Don't know why she'd have fluid in there, since she has tubes.  But that's the simplest explanation, give us some drops, clear out the infection and go on with life. 

Cause she's laying in the floor crying that the world is wiggling, the world needs to stop wiggling, make it stop wiggling.  

This isn't in the parenting books folks.  

This is teaching your kid hard lessons.  

Like sometimes, you have to keep trying even when you don't feel like it.  The shoes have to go on, even when your world is wiggling.

Like you can't demand that someone be kind to you just because you don't feel well.  You have to take care of yourself, meet your own needs, but you can't demand niceness from someone else.   

Like sometimes, there are thorns of the flesh.  And we want them to go away.  We pray for them to go away.  And God says no.  And we are to love God, and glorify God, and praise God, even when our world is wiggling.  Even when our child's world is wiggling. 

Saturday, January 23, 2016

A View From the Top of the Fence

Some mornings, it just hits you.  

You realize you have a glimpse into a lifestyle that others are simply incapable of even comprehending, through no fault of their own. 

I didn't plan on being in this unusual position.  Straddling the fence.  Not really in either camp.  Just sort of perched... but I'm learning to count this vantage point as a privilege.  

There's a fence between the "special needs" parents and the "normal" parents.  Those on the "normal" side of things peek through the knotholes of the fence to the "special needs" side and say "I don't know how you do it.  I could never do that.  You must be very special people to be given a child like that."

The people on the special needs side don't often have time to spend with their eyes against the knothole watching the normal parents.  But sometimes the normal world leaks through and they get a glimpse.  And their reactions differ, sometimes by the day.  Anger, disappointment, rejoicing with those who rejoice, mourning, enjoying being reminded life goes on, sadness that their child isn't experiencing that world.  

I read "Dear Exhausted Mom of Littles" this morning.  I love the sentiment.  I do.  Moms need to hear that they're not alone, that they don't have to do it perfectly, that they've got what it takes. And for two of my children, the entire article is definitely true.  But one of my children gives me a different perspective on a couple major points, and they really hit my heart because of my position on the fence.

See, my 4 year old has Crouzon syndrome and a Chiari malformation and autism.  I consider myself perched on the fence because she's able to walk and run and is extremely verbal, and I fully believe she will be an independent and productive member of society as an adult.  There are parents with children with these diagnoses who are very soundly on the special needs side of the fence, who don't have that hope.  But I'm not on the normal side of the fence either, because every day her diagnoses affect us.  She needs some accommodations to function at her best, and we have to keep her special brain and body in mind when we discipline lest we "provoke her to wrath." 

Yes, I am trying to work myself out of a job.  But there's a different time table for us.  I hear people talk about how much easier 4 is than 3, how they can dress themselves and put on their own shoes and coat and buckle themselves.  But that's not my world.  Some days, my 4 year old can dress herself.  Some days she simply can't.  Some days, those shoes go on.  Other days, I don't even make her try because it's not worth the inevitable meltdown and cries of "I can't do anything!" 

I won't always be this tired?  When she's a teen, and a front comes through, she's still going to be in pain.  I'm having to accept that.  And in the middle of the night, when she's crying in pain... I hope I still hear her.  And I hope by then I'll have come up with better pain management techniques to help her.  So yes, I may be this tired for much, much longer than most "normal" parents. 

But I'm perched up on this fence, so who my heart really aches for are those I can see on the other side, who aren't working themselves out of a job.  

They won't always be this tired, no... because the odds are they will bury their child.  

They aren't working themselves out of a job, because, without a miracle, their child will always be completely dependent.  

They look ahead at the years to come, and instead of an image of an independent child growing up and moving out, they see darkness.  They don't know what's ahead.  Or they know and don't want to think about it.  They watch their child deteriorate.  They pray for another child to die so their child has a chance to live with a new organ.  They see unending days of diapers and tube feedings and fighting pressure sores.  They see hospitals.  Days, weeks, months in hospitals.  And they know there's no guarantee they'll walk out of that hospital with their hands as full as they were when they walked in.  

They're not super heroes.  They're moms and dads.  Just like you and me.  This is the hand they've been dealt.  And they get up every day, every night, and put one foot in front of the other. They suction the trach,  They change the diaper.  They check the IV pump and see which nurse is coming today. 

I guess I just ask you exhausted moms... occasionally, think about the other side of the fence.  Don't just thank God you're not over there.  Pray for the moms and dads who are there.  Find someone and pray specifically for their child.  They're all over Facebook and CaringBridge and dozens of other sites.  It's not about making you feel better about your situation.  It's about being a support for that parent and that child, though they may never even realize it.  Maybe when your children are older you can practically serve a local family.  Maybe you can contribute to a care package or write a note.  Even if "all" you do is pray and write on their message board that you are doing so...

I guarantee, when you glimpse the other side of the fence, and you keep your eyes open, and you pry a board off that fence... you'll see your heart expand.