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.

Friday, December 4, 2015

Singing on a bad day...

"Mommy, why you singin'?"

"Because singing makes me happier, and I've had a bad day."

A few minutes later...

"Bwess da Woord, ah my tole...  I had a bad day, but singin' make me happy."

Well, if nothing else, my children will learn some good songs and that singing can make a bad day better.

As I was listening to my "strength" playlist while fixing dinner towards the end of a very trying day, I was brought back in my memory to the last time I listened to that playlist over, and over, and over again.

My daughter had just been diagnosed with autism and was facing an MRI that I feared would reveal more problems and need for more surgeries.

I felt helpless.  I was so discouraged, and wanted so badly to fix everything, but there was nothing I could do.  I'd been doing everything that was suggested, and trying to find more to do was just overwhelming.  All the programs cost money we didn't have, there was no intensive therapy available within 5 hours.  And I'd worked so hard, so long, to try to avoid the very diagnosis she'd been given.

My husband sent me out to a field, to look at the open sky and rest in the God that made it.  And while there, I was able to say, "thank You, God, for the autism."  And over the next few weeks as we waited on the MRI, I sang over and over, "Though You slay me, yet I will praise you.  Though you take from me, I will bless Your name.  Though You ruin me, still I will worship, sing a song to the One Who's all I need" by Shane & Shane.

And while I sat in that hospital, I played those words over and over in my head: "I come, God, I come, returning to the One Who's broken, Who's torn me apart. You strike down to bind me up, You say You do it all in love."

And we came through it.  Six months later, there have been no more brain surgeries.  Many problems that seemed like a brain problem were caused by something controllable with a strict regimen of Miralax and fiber gummies.  She has made great progress, not only tolerating but enjoying social activities such as Awana and preschool.  Just a few weeks ago, she walked to children's church with her sister without me.  That was huge!  The autism isn't gone, but we're not regressing, and we have great hope that she'll be just fine.

Life was pretty good.  Busy.  Chaotic, which is normal for us.  But good.

Then, some things I had let get lost in the shuffle of life with 3 young children suddenly became urgent problems.  Then water started bubbling out of a hole in the basement floor.  Then I did a load of laundry and we had small fountain and a growing stream in our basement.

Suddenly, life wasn't good anymore.

Suddenly, "I'm thankful for indoor plumbing" wasn't just something to get a laugh at the Thanksgiving table, but it was a serious "I'll be thankful when we can actually use ours again."  At first, my panic was simply, how are we going to pay for this?  Then it became, can we get this fixed before the ground freezes?  Then it became, can we even find a plumber able to do anything?

And I was panicking.  I was ready to get out in the yard with a shovel myself.

But the kids threw shredded paper all over my freshly cleaned living room, and so I put on those songs.

And I was reminded... over the bowl of rinse water to be discarded outside... God is as much in charge of my pipes as He is my daughter's brain.

So what if this is happening because I haven't been faithful in tithing?

Do I discipline my kids just because I'm mad at them and want them to suffer?

Or do I discipline them in order to get them to a better place, a place where we can enjoy a relationship, where they can be functional and able to grow into what they are capable of doing?

Even in the discipline... the point isn't what they did wrong.  Not really.  It's part of it, and it's important for them to realize their mistakes.  BUT... in most if not all cases, a focus on the positive will do just as good a job helping them to make better choices.  Tonight, they spread shredded paper all over my clean living room.  Had I told them not to do that?  Not really.  But what they need to learn is not "don't spread shredded paper," but "be kind and considerate."  Which is more relational and less a rule.

I may feel like I can do more in this situation than with Ladybug's brain.  I can tithe.  I can help haul concrete, or hand pipes, or make coffee in disposable cups for anyone helping us.  But if that's all I do... I'm missing the point.  At least I think I am.  Because the point may be less about do x, y, and z, and more about, trust Me.  Let Me handle it.  Take that tithe money out, even though that means there's more month than there is money.  Bring Me the plumbing problems, because I've already got a plan for how you're going to get through the winter.  I knew about that crumbling pipe, and the in-the-way gas line, and the half-dead trees, and the friends with skills, and the lack of plumbers.  And even though it was your mistake, I knew about that misunderstood and misplaced bill too.

And I don't want anyone to think I'm putting words in God's mouth.  I sure haven't heard Him audibly speak any of that.  But I do know for a fact that nothing surprises God.  That He's in control of everything.  So... maybe that's what He's teaching me?

Or maybe he just wanted my kids to hear me singing on a bad day, so they'd learn that it helps.