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.

Friday, January 15, 2016

2 Weeks Old

2016 is two weeks old... so how are you doing on your goals?  

The number of people who give up on their resolutions is rather discouraging.  The odds are definitely not in favor of those who actually want success!  After listening to a several different talks on goal setting, I knew one thing for sure: simply saying "I want to do better in __, __, and __" was not going to work. 

I'll admit, I'm not exactly where I wanted to be in my progress at the two week mark.  Actually, I haven't even managed to type my goals into the proper format yet.  But what I have done is started on at least a couple of things, and most importantly, I'm doing my bi-weekly evaluation on myself. 

I started using a planning system that I really like.  It doesn't cover everything, but it at least gets me started.  


I've been pretty faithful in starting my days with this, but I'm noticing a trend.  Things are getting carried from one day's to-do list to the next... to the next... to the next... So the way I'm changing things to handle that is to ask myself, what is it about this thing that is keeping me from getting it done?  Is it too big and broad?  Overwhelming?  Distasteful?  Just not important?  Is it something I really need to get done?  

For example, one of the things that has been floating from day to day is "organize finances."  I changed it to "write down due dates and amounts for bills" but even that is getting carried over.  Part of the problem is the Mechanic and I were supposed to have a budget meeting together to hammer out most of the details.  Instead, our baby sitter ended up in the ER, we ended up with extra kids, our truck ended up sliding into a utility pole, and now here we are a week later, still no budget meeting with a totaled truck. 

Dealing with finances is also overwhelming to me.  Anytime I start working on finances, it seems to eat time worse than Facebook.  I get no laundry done, dinner doesn't get cooked, and I get a tremendous stress headache.  So I avoid dealing with it.  Not smart.

For this next week, I'm going to try a different technique.  I'm going to put a time limit on the financial to-do bullet point.  Spend 30 minutes working on a bill calendar.  In addition... after that 30 minutes, I'm going to make myself a milkshake. I've been craving a milkshake, and while that doesn't fit with my goal to reduce sugar, it's more important right now for me to deal with our finances. 

I think, by putting a time limit on it, it won't be so overwhelming.  Just 30 minutes.  By connecting a reward with it, I'm more likely to actually do it.  And, that means I'll start.  Forward motion tends to cause more forward motion.  It's just getting out of that "stuck" mode that's the problem.  

Thursday, January 14, 2016

Normal Crisis

So still thinking of prayer in good times and bad times.  

When your child is in the hospital bed, you turn to God.  I'd say it's easy, but it's not... but where else do you turn?  

When you're in the "good times" and everything is great, you find good stuff to thank God for.  Need help?  Follow the sermon outline from last Sunday. 

When you're in between?  

When your child isn't in the hospital.  But life isn't "good."  

When it's ceased to be a crisis because it's just normal life for you.

When your child copes by squishing herself between the storm door and the main door. And screams hysterically when you insist she go all the way in because it's 15 degrees. 

And that isn't really a crisis because it's every week, but it isn't "good" either. 

When you're in the waiting game of "is this another real crisis?"  When there's another specialist on the horizon.  When there's another test, and you're torn between wanting to know for sure, and yet terrified of what it might reveal, and at the same time... you really just don't want your kid to have the test. 

And you know many other people who have it much worse than you... and better than you...  and they all find themselves in the same boat.  Crisis is normal.  Normal is crisis.  

How do you keep God in that?  

Where is God in that?

I prayed today, sitting on my child's bed.  Holding her stuffed animals that have been faithful in every hospital bed she's been in.  

And I told God this sure didn't feel very loving.  And this sure didn't feel very good.  And I really just want my kid to be healthy, and pain free, and develop normally, vehicles to run, and the bank account to be plentiful, and life to just get and stay boring.  

Rock of ages.  Rock.  Of the ages.  He doesn't change.  He doesn't move.  He says He's good, therefore He is.  He says He's love, therefore He is.  His purposes are sure, steadfast through all generations.

"You keep him in perfect peace whose mind is stayed on You, because he trusts in You.  Trust in the Lord forever, for the Lord God is an everlasting Rock." - Is. 26:3-4

It doesn't say your life is easy, or good, or nice.  It has to do with the mind... what it's focused on... what its foundation is. 

And that's a rock you can build on.  That's stable through the crisis.  That's stable in the crisis that becomes your normal. That's stable on the average days and the good days and the bad days and the Mondays and the Thursdays. 

Sunday, January 10, 2016

What if...

One message has been whispered into my heart and mind over the last couple of days.

God is God, and I am not.

It's been said in different ways, but that phrase sums it up most simply.

Friday found me angry.  Broken and angry and shaking my fist at God.  Questioning, "why are You doing this?  We're trying to get things right!  We're trying to get our act together!  And it seems like we run into obstacles at every turn!  And on top of it all, You have to cause my child pain.  You have to make her body complicated.  You have to give her problems that cause her to say "I can't do anything!"  Why can't You just heal her?  Why can't things just be easy for once?"

And I stood up in church today to ask for prayer for her, and I said it would be nice for her to have good health for awhile.

And the sermon was about praying in the good times.  I had a hard time identifying with that at first.  I whispered to the Mechanic, "God doesn't seem to allow us more than 24 hours of good times at a time."

But I've continued to think about that phrase used in the sermon today.  "God is God and I am not."  I recalled a song I played often in my college days, when things didn't seem to be going according to my plan.

And I've thought about what C.S. Lewis wrote in Till We Have Faces. "You Yourself are the answer.  Before Your face questions die away."

And I posed this question to myself: what if God hadn't protected my husband in that wreck yesterday?  What if cancer became, not that person over there, but became me?  And this is the hardest one for me right now... What if God doesn't heal my child?  What if He doesn't take away her pain?  What if her pain increases?

Is God any less God?  Is God any less good?

It's easy to say how powerful and awesome and great and good God is when He holds back the snow for the perfect length of time to get our plumbing fixed.  It's easy to praise Him when we're involved in wrecks and walk away from them.

But when my daughter is crying?  When I don't see an end to her pain that'll last beyond the next weather front?

What if... in addition to praying for healing, begging for relief, I prayed for God to be glorified through her pain? And applied that thinking to everything else I pray about?

Because it's not about God rescuing us from our circumstances.  He can, and He sometimes does.  But it's more than that.  Because if it's only about rescue and relief, what is there to fall back on when you aren't rescued and there is no relief?  Do you conclude God isn't really God?  Or that He's not good?

Truth.  Fact.  You have to base your life on those stones, not on ever changing feelings, whether they be warm fuzzies from seeing incredible provision or that sick sinking feeling in your stomach when you find your daughter curled up in pain and fatigue.

That's why I love the song "Bring the Rain."  Because it ends with the basis for belief: "Holy Holy Holy is the Lord God Almighty."  It's not about feelings.  It's not about healing and protection.  It's about the God of the universe being holy.  It's not about Him rescuing us from this life, but walking through it beside us.  Emmanuel.  God With Us.