Friday, October 18, 2013

Five Minute Friday: Laundry

I did laundry today.

It was wonderful.

Wow, now how often do you hear that said?

You have to understand... I have been without a washer and dryer of my own for two months.  Two very long months.  Months of toting the laundry through the alley to the laundromat.  Months of quarters.  Months of trying to remember which machine actually works efficiently.

I had taken my own in house washer and dryer for granted.  I hated laundry.  But I had it easy.

Now... I don't enjoy it, really. But, I look at those machines, and have three thoughts. After this week, the first is, at least I'm not in a puddle or riverbank beating my clothes with a stick.  The second is, these two machines are evidence that God answers prayers, even for washers and dryers.  And the third... Will I ever get caught up, cause this family makes a lot of laundry!


Written as part of a community of bloggers who gather each Friday at Lisa Jo's blog to write, without obsessing over perfection, just letting thoughts flow from a single word prompt.  Come join us!

Thursday, October 17, 2013


Someone said my child was smart today.

I was speechless.

I didn't know what to say.  I'm ashamed of what popped into my head.

I've bought into the "tell a kid they're smart and they won't work as hard" mentality.  So I focus on "good try."  Or "I'm proud you're working so hard on this."

But outside our little house... smart is still the word.  I hadn't thought about the lack of it bothering me. Until I stood there, at a loss for words, because someone called my child smart.

A refreshing point of view, and yet, a dagger through my mother's soul.  How do I view my own child?  I can get so bogged down with the problems that I don't see what she can do.  I focus so much on getting her to put two words together that I don't enjoy the way she says the one word unlike anyone else, or I don't appreciate how she signs please so often her sister thinks it's a sure way of getting a bite of what we're eating.

How to balance realism with hope, knowing what needs to be worked on with what can be celebrated?  I haven't figured it out yet.  Some days, I can think of little else.  Others, I convince myself we're normal and everyone else is advanced.  And who defines normal anyway?

Friday, October 11, 2013

Five Minute Friday: Ordinary

Back on the kindle... computer died, again. Good grief.


Some days, I long for ordinary. No moving. No packing and unpacking. No doctor visits besides well child checks. No therapy. No specialists. Just waking up, drinking coffee, doing laundry, fixing dinner, reading a book, and going to bed. Day in, day out, no surprises.

And there are days I try to deceive myself into believing that's my life. And I procrastinate the packing. Or I try to convince myself that I'm ordinary and everyone else is weird. That struggles and problems are normal.

And truthfully, they are. Because of sin, problems are ordinary. Yet, I sometimes resist that thought. My problems are special. Even in little things, like being on time, I let myself think that I shouldn't be expected to arrive on time, after all, look how young and close in age my kids are.

Nothing new under the sun... others have walked this path. I'm not alone. And while my problems, my doubts and fears, my struggles, are just ordinary, there's an extraordinary grace and love that can carry me through.


Written as part of a community of bloggers who gather at Lisa Jo's blog to write without obsessing over perfection. Come join us!

Thursday, October 10, 2013

The Question With No Answer


This is one of those posts in that category of not special needs, but special needs.  Where I talk about how my life as a parent isn't what I thought it'd be.  Where I find myself in offices I didn't think I'd ever be in, discussing problems I never knew existed outside the NICU.

It's more than just "why my kid?"  Definitely far more than "why me?"  It's like asking "why does digestion occur?"  I'm not asking for a great philosophical explanation.  I'm asking for the mechanics, the building blocks of stomach producing acid and the muscles contracting and the cells absorbing.  I guess I'm asking "how" as much as "why."

Because it seems like there's always something.  And while I knew when we received the FGFR2 mutation diagnosis, we could be spending time in offices I'd hoped to avoid, I didn't anticipate the broad range of issues we've encountered. I don't think I could have.  Because it's not like all of these issues are linked to cranio.  If they are, it's not documented in any research article I've ever read, and I've read a bunch.

And of course, I wonder if there's something I did.  Did I not heat the lunch meat long enough?  Was it that hot dog that gave me the stomach ache?  Did I not control my sugars well enough?  Was it the stress of that horrible summer?  Why is this child the way she is?  Why does she have to struggle?  Why does her body just not function the way most bodies function?

I want a simple answer.  I want a diagnosis.  A gene.  Something they can point to and say "this is the cause of all the problems, because they're all linked."  And most importantly, I want them to say "and here is what the future looks like.  Here are the other things that might happen and what we can do to help avoid or treat them."  I want a blueprint.  I want a syllabus.  I want a map.

I don't do well at this fly by the seat of your pants thing.  I like a flight plan.  I like to know what's going to happen, when it's going to happen, and what I need to do to prepare.  I hated surprise outings on weekends as a kid.  "Where are we going?"  "It's a surprise."  "What do I need to wear?"  "Clothes."  "What kind of clothes, outdoors or indoors?  Active or sedentary? Seeing lots of people?  Dirty or clean?  Do I need food?  Should I bring a book?  How long will we be gone?"  "Just get ready."  Argh.  I hated those kind of trips.

Yet, that's exactly the trip I'm on.  I'd like to imagine that the rest of my parenthood will be smooth sailing.  But it won't be.  I'd like to imagine that her muscles will strengthen, her hearing will be fine, her head will not change, her development will go away, and nothing new will come up.  But after the last two years, I know that's about as likely as pigs flying.  And it's frustrating. Because I want to prepare, to study, to ready myself for what's ahead.  But that's not how life is.  It's especially not how life is when your child isn't "normal."  And who defines "normal" anyway?

Monday, October 7, 2013


In honor of being real.

Needy family moving to town, in need of bed and dresser.

There I was, in church, looking over the bulletin.  And a giant green monster rose up inside me.  The green monster of... bitterness.  Wait, green monster is supposed to be jealousy you say?  Well, sometimes behind that jealousy is a root of bitterness.

Why should they get something for free?  What qualifies them as needy?  We only have an air mattress.  No dresser.  Why should someone give them what we're living without?

Bitterness.  I've seen what it can do.  It's a blackness that can creep through families and destroy.  It can suck the joy out of life.  It can bring gloom that lasts longer than any unending winter.  It seeps through your body and infects your mind and your heart.  And then it finds its way out of your mouth.

In our small group, we spoke of the calling of the first disciples.  How Jesus called them to follow Him, and they immediately left their boats and everything and followed.  And we were asked what that must have been like.

Leaving everything is hard.  I didn't leave everything.  I left most things.  And some days, it angers me.  It irritates me when I have nowhere to put clean clothes because we left our nice dressers behind.  It makes me upset that I sleep on the couch because I can't sleep on an air mattress with another person.  It frustrates me that one of us has to sit on a step stool for dinner because we left our table and chairs behind, and I could only afford to buy a card table with two chairs, and a booster seat is tied to one of them.  And the laundry baskets.  That part makes me mad.  It makes me irate.  It makes me see red.  I had a lovely laundry organizer, and two hip baskets, and two baskets for diapers and kids clothes, and a convenient bathroom hamper, and a pretty hamper. And we didn't bring them. Now, I have a college style mesh hamper that is impossible to carry one-handed and is falling apart because it's not big enough for a family of four.

At this point, we've been without most of the stuff in our UBox so long that I don't even remember what's in there.  Except I know that everything I've mentioned above is not in there.

And I find myself focusing on what I don't have.  What I used to have, and no longer have.  What I'm having to spend money to replace.  Used to, I could say to myself, you really don't need anything right now.  It'd be nice to have some decorations, and pictures on the walls, and a centerpiece, and some wreaths, and a new couch, but you don't need them.

But let's be honest.  Laundry hampers are just about a need.  If you don't have them, I'm not sure how you're supposed to deal with four people's dirty laundry.  It's driving me crazy.  "Honey I need whites done."  "Well, where are your whites?"  "I don't know."  "Well, I'm not going through that explosion of a room in there.  If you want your laundry done, you have to get it to me."

Yeah, that's not good for marriage.

And of all things, the sermon was on peace.  He started off with the example of wondering where peace is in the midst of kids going crazy around you.  And then he gave several other examples of where peace can be lacking.  I identified with almost every one of them.  Money.  Family relationships.  The state of the nation.  How to parent our kids.  Common stressors.

So how do I go from the seeds of bitterness to having peace?  Because I don't believe peace is a Pollyanna attitude.  It's not a stick your head in the sand either.  It's not denial.  It's deeper than all that.  And as the sermon title said, I don't get it.

Some days, I do.  I think I've documented some of those days on this blog.  But right now... yeah.  I'm not there.  I'm not sure where I am, but it's a long way from the smooth waters of peace.  As I said in small group when asked if we were in the boat with Jesus, or on the shore trying to figure out what He's talking about, I asked can we be in the sea?  Somewhere between the boat and the shore?  Drowning? Cause that's where I'm at.

No ending this blog post with some cheerful thought or spiritual insight.  Just being completely, honestly real.