Wednesday, February 26, 2014

A Mother's Thoughts on a "needs surgery" email

How do I describe the thoughts and feelings I experienced when I got the email saying my daughter needs surgery?

What mom wants to hear that they're going to take the back of her child's skull off?  This isn't like putting tubes in ear drums.  This isn't like getting put to sleep for a non-invasive test.  This is big, to quote Barney Fife.  This is a procedure that's only done one place in the entire USA that we know of.  This is bloody.  This is painful.  This is messy.  This is expensive.

But this is her chance.  This is what I've fought for, since I first found out she had closed sutures at 15 months.  I didn't know this procedure exactly was what she needed, but I knew something needed to be done.

And incredibly, or maybe it's not so incredible given the last few months, when I got that email, I had peace.  Finally.  Despite probable out of network doctor.  Despite being in Texas, which is a long way away from Montana.  Despite facing balancing a newborn baby and a fresh post-op child through Denver airport, which wasn't the kindest to us car seat-toting parents. Despite having no idea how to handle caring for Turkey, who may very well be upset at seeing her big sister unable to jump on the bed.

It'll work out.  I really believe that, just like this crazy move to the middle-of-nowhere Montana, God has opened this door.  And He's closed the other ones.  I think He gave me a brain and a gut and when I no longer feel comfortable, it's time to move on.  In all honesty, finding this doctor, knowing to check for this particular brain malformation, was a fluke.  If I'd just trusted our first doctor, none of this would be happening.  And I think God's had His hand in this.  And His hand will see us through... through the insurance battles, the airports, the surgery, the recovery, the medical bills... It may not be pleasant.  Just like the move out here hasn't always been pleasant or easy.  Sometimes, you have to deal with grey shag carpet in the dining room and kitchen sinks that don't like to drain.  There may be challenges with what we face now.

But He is in control.  He is the Great Healer.  And He is going to take care of my child.  And while I need to believe that no matter what, I must admit, it's a great comfort to me to know the name of the person He's going to be using!

I'm taking her on a trip for her autism evaluation starting tomorrow.  Last week, I was dreading it.  I didn't know how I was going to get through it without crying.  Now, I no longer fear it.  They can say whatever they will.  I know the doctors say they can't promise anything, but I believe this surgery is going to give my child a chance to learn and develop like she did in December after her skull changed shape overnight.  There will be things to work on, but whatever label they want to stick on her is not the end of the world for me anymore.  I have hope.

Thursday, February 20, 2014

Who do you really trust?

I was on my hands and knees picking up craft pompoms, pretend baby bottles, shape blocks, and puzzle pieces. (btw, this is horribly painful when you are 36hrs post-TDaP shot.)  The house was silent, which is a rarity.  Pandora had timed out, the Mechanic was at EMT class, the kids had gone down easily at 1900.  And a song phrase ran through my head that I'd been pondering off and on since hearing it this morning.  I'd first been introduced to it at our church the first week in Glasgow, but it'd been quite a while since I'd heard it.

"You are peace, You are peace, when my fear is crippling."

I've been in desperate need of that peace.  My fear, my anxiety, has gotten to the point of crippling.  I've needed to cry and release some of the tension, but I haven't been able to find that release.  The anxiety is too deep to be released by crying over some sappy movie or song.  But finally, as I sat on the couch this afternoon, holding my phone with the MRI report and a notebook next to me (those things have been within arms reach of me pretty much constantly since Monday), a few hot tears spilled out.  I was sitting there thinking how there were tons of things I needed to be doing, but I couldn't focus on any task long enough to finish.  I was so angry that this doctor wasn't calling me back.  I blamed him for my failing my glucose tolerance test.

And I wanted to know, where is this peace?  Cause I didn't have an ounce of it.

And while picking up the swath the two toddler hurricane had left behind, it occurred to me.

I'm placing my trust in doctors.  We pray every night for the doctor to call us and tell us he will help Ladybug's head so she can learn easier and not hurt.

And while you do need to trust the doctors who are making sure your child continues breathing while under anesthesia, and you really need to trust the doctors who are slicing your kid's head apart, ultimately... while they are tools, they aren't the healer.

I'm angry. I'm frustrated.  But, this doctor is not the end-all of my child's healing.  God can use him, if He so chooses.  Or God can slam the door shut in my face and say no, this doctor isn't going to do surgery on your child.  Or God can say no surgery at all.  He can heal her without surgery.  He can chose not to heal her at all, with or without surgery.  I'm trying to play God.  I'm trying to manipulate circumstances in the way I see fit.  That is part of my job as mama bear, in a way... but I also need to realize that I'm not completely in control.  And neither is the doctor.  And neither are the two, or three, of us put together.

The only way I'm going to get peace is to realize that God is the one in charge of my child's brain and skull, not me.  Not the doctor.  Not the other doctor.  Not the other other doctor. And I've got to trust Him enough to be willing to say, You know best, and I chose to trust You.

Nothing can prepare you for parenting...

Monday, February 17, 2014

A Chance

I sat in the floor and listened to her. And I could understand almost everything she said. We had a simple conversation, about stacking blocks and her little brother and a fellow playmate' s snazzy boots. I watched him pretend to drive a truck, and then pretend to fix the roof of the truck, or had it turned back into the slide house again?

When I got home, after I fed everyone lunch, I pulled her into my lap and squeezed her.  And I held and kissed her head, for once not feeling the lumps but thinking only of the heart inside that little body.  I hope and pray for now she has no idea.  It may be hard to believe given all I write, but I honestly forget how different she is.  I'm not interacting directly with her age often, so I don't realize what a gap is growing.

Is she oblivious? I hope so.  How long will she stay that way?  Will she be able to make friends?  I talk about her new friends, try to learn their names so I can talk to her about them in hopes that calling them friends will create reality.  She won't be two forever, and it doesn't take long for little girls to form cliques.  They throw daggers far too early.  How long will it be before they're thrown, and before she realizes she's excluded?

This is why I'm fighting for surgery. I want her to have a chance. A chance to develop normally.  A chance to be able to communicate and build friendships with her peers.  A chance to learn without having to struggle for every gain. I know there are no guarantees. I know there's a risk of complications. But if something doesn't change... how behind will she fall? How isolated will she be?  And how much hurt will her heart experience?

I'm trying to teach her to hug.  To teach her to give and receive affection.  Because just giving her affection isn't working.  But I can't teach everything.  I need her to have a chance of absorbing it, the way her sister does.  I'm not asking the doctors for a miracle. I'm just asking for them to give her a chance.

Friday, February 14, 2014

FMF: Garden

1. Write for 5 minutes flat – no editing, no over thinking, no backtracking.
2. Link back here and invite others to join in.
3. And then absolutely, no ifs, ands or buts about it, you need to visit the person who linked up before you & encourage them in their comments. Seriously. That is, like, the rule. And the fun. And the heart of this community..


I grew up with gardens.  My dad had a vegetable garden every year that I can remember, as did my grandparents.  And now, living in farm country, I'm surrounded by gardens of wheat and other stuff I have yet to be able to identify.  I've never gardened myself and really wouldn't know where to start, I'm sad to say.

But, I do know in order to have a good garden, you have to continually work on it.  There are seasons of intense activity, and seasons of slower activity, but there's always something to be done.  You may be planning the arrangement, ordering seeds, filling the ground with compost.  Or you may be weeding and watering and pruning.  Or you may be harvesting.  But it's a long term investment.  It's not something you start and a month later you have your reward.

In the midst of my battle over Ladybug's head, I've thought so many times "I just want this to be over.  I want this to be behind us so we can move on with life."  Just this morning, I said the doctor had 10 weeks to get her taken care of so I can have this baby in just over 11 weeks.

While I might should push for rapid treatment, I can't allow myself to think that it will all be over in 10 weeks, though, even if the doctors cooperate.  There's no guarantee.  Surgery might fix her issues, but some might be left.  Some may have nothing to do with her brain and aren't fixable at all.  Complications might arise after  surgery.

Children are like plants in a garden.  They take time, and there's always something.  By focusing on having it behind me, I might be setting myself up for disappointment.  I'm in a season of frantic activity right now, but that doesn't mean my reward is going to be sitting on a porch drinking lemonade next month.

Thursday, February 6, 2014

Desperate: Ideals & Going Under

Oh, how I identified with this Sarah Mae in this chapter... I too had an idealistic view of the type of mother and wife I'd be.  I dreamed of being the mother on the street with the neighborhood kids gathered around the counter eating fresh baked cookies and doing their homework.  I imagined myself playing tea party with my girls, baking cookies with them at a young age, with their hair tidy and smelling sweet. I'd be the consistent disciplinarian, always on the same page as my husband, yet never raising my voice or getting frustrated.  I pictured myself greeting my husband at the door with a kiss and having homemade goodies available for him to snack on, a from-scratch dinner in the oven ready to eat at 5:30pm sharp, the house clear of clutter and myself decent and presentable.  You'd never catch me wearing the same clothes two days in a row.

But somehow, my imaginary life and my real life don't seem to be on the same page.  Most of the time I don't raise my voice or get frustrated, but it happens more often than I'd like, and the frequency is increasing.  Not the direction I want my motherhood to be going.  I couldn't tell you the last time I baked cookies.  I couldn't manage a brief conversation with my neighbors in the doctor's office, let alone have I had their kids over.  I've never cooked with my girls, and more often than not there's food in their hair.  I don't greet my husband at the door. Dinner wasn't ready tonight until 7:30pm.  Until the last few days, I've been doing good to clear a path from the front door to the kitchen.  And I've fallen into that horrible habit of not wearing clean clothes each day if I don't have to go out.

On one hand, this bothers me immensely.  I'm living the life I dreamed, but I find myself playing some second-rate part, just barely scraping by, focusing on surviving each day.  I find myself frustrated by my lack of knowledge.  I have become angry that I was supposed to be prepared for life, and yet I feel I got a bunch of book knowledge that is so useless I've forgotten it, but I don't even know how to get stains out of my children's clothes.  I am irritated by my lack of experience in how to keep a grocery budget reasonable; breakfast and lunch were almost always ready-made items that I'm told are a big chunk of my excess spending.  Oatmeal that isn't instant in single-serve packages?  Tuna casserole or rice & beans instead of Lunch Buckets and Hot Pockets?  These are foreign concepts to me, yet I desperately need to learn them!  I may have come from a family that gardened, but the knowledge of when and how to plant and how to preserve the food did not get handed down.  I sat inside with workbooks while the planting happened.  I played or read while food was canned and frozen.  If only I'd known as a 14-18 year old what I know now, I'd have been in that dirt and in the kitchen finding out how to do those things!

Yet it's also easy to fall into the trap that what I'm living is acceptable.  It is normal.  But normal doesn't always mean right.  I should be seeking to improve, not be content to wallow in my messy cluttered overwhelmed life.

The key seems to be, what is my attitude in seeking to improve?  And how am I trying to do it?  While I use websites to try to discover how to get macaroni & cheese stains out of Turkey's shirt, am I allowing myself to harbor anger that I wasn't already taught this?  When I ever get around to making those apple muffins that aren't from a package, am I inwardly stewing that I'm having to try to cut our food budget when I don't even have a dishwasher?  When I bite my tongue and don't snap at my toddler for knocking the vacuum over for the 5th time today, am I just doing that so I can brag that I didn't lose my temper today?  And am I trying to do all this in my own strength, the "pull yourself up by your bootstraps" method?

Because that doesn't work.  I've tried that method, and I've been lucky if it's lasted 24 hours.

The only way to change, the only way I can hope to become the mother & wife I dreamed of, and the only way I can keep going when I fail miserably, is through Christ.  Through His grace, and His love.

I don't have the willpower to control my tongue, let alone my thoughts and heart attitudes.  When two toddlers can wreck a room in 10 minutes that it took me 3 hours to clean, my natural response is irritation and frustration.  Or despair.  But, if through Christ's grace I can look at my children as He sees them, I can do more than get angry.  Or withdraw onto the couch and attempt to ignore the situation.  I can try to get into their world, I can speak love to them, I can redirect and train and create memories.  For those mess-makers are what He describes as "such is the kingdom of heaven."  Were all the children who came to Jesus that day developmentally advanced?  Or did He reach out His hand to the withdrawn one in the back who hadn't said a word?

And when I slip... when I get frustrated and speak too harshly... when I ask accusingly, "What is wrong with you?  You did this last week, why can't you do it now?  Stop thrashing your head, pick up the crayons, do it now!"  And when, within seconds, that dagger stabs my heart and I realize the tone that just came out of my mouth, and I'd give anything to be able to take it all back... Christ's grace can enable me to accept His forgiveness, ask for hers, and hand over hand, if that's what it takes, gently help her to complete the task.  And His love can then flow through me as I calm and distract.  His peace and ability to heal can guide my worries into prayers as I rub her lumpy head and try to look into her eyes and understand what's going on in there.

I can't do it alone.  I can't do it through my own power.  And all the "me time" in the world can't substitute for putting God's words into my mind and heart.  I've let myself slip, and my family has paid the price.  I've succeeded in drinking my coffee before getting the children up for most of the last month... this coming month, I think I need to drink something in addition to my coffee, the Living Water that will spring up into eternal life. (*splish splash* and make me whooooole... sorry, now the song is stuck in my head!)