Wednesday, October 22, 2014

Life is Hard And God Is Good..........

Last weekend we took this photo for my mom - she had surgery and I couldn't be there to support her so instead the kids and I got out crazy hats and sent her a photo to encourage her.  I wanted to make cards and send them - or mail a  care package ahead of time - but the truth is that there simply wasn't enough of me left at the end of the day to do one more project so she got a photo (late) instead.

And I am sure that she is happy with that. Though she would have loved a box of homemade treats and some incredibly tacky kid cards.  Because my mom knows the truth of caregiver burnout...she's walked these roads herself and understands what it means to look at the clock and sigh..."all of this in a day/month/year.... AND.... I must now make dinner?'   Seriously?!!!! Wahhhh :(

It's that place in life where we find ourselves crying in the shower, face down prostrate on the floor, or fantasizing about running away to Hawaii- overwhelmed, underequipped and fighting for that next breath.  It's where all I can cry out is 'Jesus' because there is no other answer-I am at the end of me and I just have to let go of everything.

But he is always there. No matter what.   The Solid Rock, the Resting Place, the Strong Tower that stops me from giving up or giving in - so I can turn my face back to the task at hand (oh..yeah...food) and a friend walks through the door with dinner prepared.  OR a break through phone call comes or simply finding enough energy to do the one-next-thing.

Exhaustion is real...burnout is real ..36 plates filled around my table each day is real.  As relentless as the mill wheel, the reality of life can wear down our fragile hope and leave us flattened and dry as fall leaves. 

But we need to see it and know it - to call truth out and find ways to let others really hear what we mean  when we say that life is hard and God is good.  Because no matter what happens today in my little piece of the world, God never changes.

I believe that - do you?







Monday, October 20, 2014

Where Would You Take A Weekend Away? (Heads up for Love and Justice Conference)...

If  had a weekend away and I could do anything I wanted...... I'd pick Bozeman Montana - hanging out and digging in at the Love and Justice Conference (nov 21/22) with Brandi McElheny - leader of the triple play ministry : Beauty for Ashes Uganda /She's  Worth It / Soul Care.  But I'd also want to be there with a few of my other friends....like Erin from Going to the Sea and well..Erin from AK on The Go.  Real life friends from childhood I'd love to split a bottle of wine with and tackle these big/hard ideas while flopped any which way on a couch.  Because we are not 21 any more...or 31 or even 41.  Shoot -we are getting to be those 'older women' that the Bible talks about who should be able to understand and demonstrate words like Justice in our daily lives to the younger ones who are following behind us.  Which is why I would want to be there.....

I shamelessly copied this from their website about the conference:

The Love and Justice Conference MontanaJustice, by definition, is “a concern for justice, peace, and genuine respect for people.” However moved we might be to act justly, we find a challenge constantly at the forefront: Where do we begin?

The first Love and Justice Conference hosted in Montana aspires to offer a point of connection for people in which we promote education, dialogue, and inspiration around a shared desire to align ourselves with the vulnerable and oppressed.
Come join the conversation and leave with the next steps in our journey to act justly.

How about you?  If you had a weekend away from your 'real' life what would you choose to do with it?  How would you invest it?

Sunday, October 19, 2014

Together for Adoption: "Extended Conversations that Matter.."

Together 4 Adoption runs close to my heart.  Dan Cruver, Jason Kovak, Jedd Medefind (or their wives :) each hold a special place in our life journey and I was super excited when I saw both the format and the content of the conference this year.

It had very little to do with fact that it was held in warm and sunny South Carolina - and a HORRIBLE winter is being predicted for Minnesota.....

Or that MANY of my friends were there who I haven't seen in 3 years....

Or the temptation to STEP OUT of 24/7 mommy role and into something else for a few days...

It had everything to do with the overarching tone I picked up ahead of time - the desire to talk about hard things, real things, deep things.  The sermon at church this morning galvanized it for me - as Mack Stiles walked us through our calling as ambassadors to a lost and hurting world I saw the connections between what I hoped was happening at T4A and what we were called to in 2 Corinthians.

To not just report on what is happening around the world - but to throw open the doors - invite each other in and sit down around the table of our real lives where these things happen.  That place where life on life ministry is as critical as breathing - to the hopeless - the helpless - the fatherless- as ambassadors of Christ in the heart of 2 Corinthians chapters 5 and 6.  Not that it hasn't happened at past T4A conferences.  I was just drawn to the new format - designed along the TED style with "extended conversations that matter."  That sentence fragment echoed in my soul - because I believe that we must speak the truth honestly and regularly with each other in order for it to go deep and take root in our hearts.  It caught my attention and made me long to be there. 

But longing is one thing and God's good plans are something else.

His design for this fall did not include me taking a trip to SC for the conference this weekend.  Instead, I am praying that those who did go will arrive safely back at their homes - with their own families. And I was in this sanctuary snuggled up with my own crew receiving the message that came through Stiles sermon today. 

I can't wait to read and hear what comes out of T4A this year.  There are already new seeds planted in my heart through the sermon today and as the thoughts and words and prayers are passed down along the love lines that connect those of us who are in this together, I can't wait to see what God is up to.  My eyes are open and I am eagerly watching to see what happens next.

Tuesday, October 14, 2014

"Only Accepting Existing Patients"......

Last night I was talking medical care with my girlfriend and realized that my ideas about care for my medically more complex kiddos has shifted 180 degrees. I used to be a loyal patient parent- following the 'keep all my eggs in one basket because its less complex than running all over town" theory for choosing drs, therapists, surgery centers and labs.

Until I started hearing the schedulers using four little words when I referred my friends to them - "only accepting existing patients." More and more often as we move more into the tightening layers of managed care.

Which was fine for my kids who were 'existing patients' but for those that were only starting to develop problems or who were basically healthy and simply broke an arm or leg, needed a learning assessment or didn't fit within the scope of our normal circle of care - I realized that by making these circular choices on small things (which er to take them to, which allergy clinic to choose etc..) I was actually limiting our future choices.

Crazy you say?

Overreacting to a subtle narrowing in the medical doorways?

Maybe - but it doesn't feel like it.

It feels like time for a new perspective to widen the opportunities even as the system is trying to funnel patients into specific channels.


Oldest daughter needed an updated dyslexia testing. But other than her broken arm in Colorado she has no care outside of our regular clinic.  The school district is unable to do the testing until next year (don't start me on that one) and I ran smack into the 'we are closed to new patients' statement with our regular team at Children's hospital.  BUT I did the total happy dance when I remembered that she had been sort of a crisis delivery with leaking amniotic fluid, infection questions and NICU attention 16 years ago sooooo would that have put her into the system and rank her as a patient?

Bingo!
at 6lbs 1 oz  with a little birth trauma it was enough to get her in.
and if I didn't remember and ask them to search for her I would have just said 'no she was not a patient at childrens' and the door would have been closed.

All this to say.....

Think out of the box a little when you hit those frustrating road blocks and new policies as our healthcare systems change and we move into a  new way of thinking about managing our children's health care.

Monday, October 13, 2014

My Kid are Perfectly Normal..... (repost from 4/13)

My Kids Are Perfectly Normal......
Do you like that title?  Are you worried that I'm living a little bit of my own personal denial fantasy here again - with a serious need for therapeutic intervention?  Probably so - especially when we consider the fact that I for some reason want my kids to be other than normal.

You see.....my kids are 100% normal as individuals with FASD, ADHD, AD's, SPD's and LD's.  They act, and think and behave exactly as they should.  They are doing everything just fine.  I'm the one with the problem.  I think the busy hands associated with impulse control should be stilled, the distractibility created by ADHD should be focused and the maturity that develops slowly with FASD should hurry up!

I need some serious counseling.
And another cup of coffee.
And a good slap upside my head.

Because I am sure I could tear my own house down overnight if I try to make it what I want rather than what it is.  I am surrounded by incredible people and I need to be sure I am not setting them up for trouble by trying to force them into being something they are not.  That's just a recipe for disaster.

Thank you God today for my perfectly normal family - for blessing us with variety and excitement and for creating the unique beauty of each one.  And for reminding me again that it's not about me but about what you are doing here.....Amen

Sunday, October 12, 2014

Halloween: Separating the Wheat From The Chaff.....


Halloween is good fun at our house - I have relaxed after years of being worried over the negative connotations of the holiday and learned to help myself and my kids separate the proverbial wheat from the worthless chaff.  I have found ways to enjoy the evening with my neighbors - bonfires and marshmallows have made our yard a landing place for both kids and parents alike and created a connecting point longer than the words 'trick-or-treat' as they linger and settle in on benches for cozy conversation, fellowship,treats and a glass of wine.  It's started already.  The pets are being dressed up - the cat as a wolf - the dragon as a DRAGON - and spider webs have sprung up everywhere.  I'm looking forward to scoring the $1 pumpkins on October 30th at Home Depot so we can carve them and decorate the patio area.  And we are starting to stash bottles of wine, marshmallows, bits of dry wood and pine cones for the fun of one more evening out with our city neighbors before the reality of winter sets in.
 

Thursday, October 9, 2014

Do You Hate The Word Meek?

Blessed are the meek, for they shall inherit the earth.
Matthew 5:5
 
 
What's your gut response when you read that verse from the Beatitudes? Does I make you want to shout "YES!!! Meek - That's my goal....make me meek Lord please!" Or do you cringe and roll your eyes.  Hoping that you wont 'need' to become the helpless, submissive, passive, conflict -avoiding, wimpy person that our culture think of when we think of the word meek.  Does meek = doormat in your mind?
 
The official Merriam-Webster definition pretty much feeds that idea 
1.enduring injury with patience and without resentment :  mild
2.deficient in spirit and courage :  submissive
3.not violent or strong :  moderate
4.having or showing a quiet or gentle nature: not wanting to fight with other people
 
It's not a 'bad' thing....but those words.  Submissive, mild, moderate, bring to mind milk toast and neutrality for many of us who were born with more....um...passionate..natures.  (self confessed strong-willed-child still living in me at 47 - working on that! Prayer appreciated! )
 
This week I have been looking into what the Bible means (rather than Webster) when it uses the word 'meek.'   I got a totally different taste of the word there. 
 
How about meek like Moses? (that's what numbers 12:3 says)
or
Meek like Jesus? (Matthew 11:29...him too)
 
Power restrained, controlled, for the good of others? Not the sort of limp meek that the world has taught me to see - but a strong, sweet, loving, gentle, intentional meekness born of power leashed in. Son of God...not calling legions of angels down to punish his tormentors.  But trusting, knowing, leaning into his fathers will by choice rather than letting loose with all the truth and power at his disposal.
 
Oh yes.
 
I long to be meek like that.
How about you?

Wednesday, October 8, 2014

FASD: Dealing With Worry......

Worry isn't a problem exclusive to kids with FASD - but in our household an unusually high percentage of the team does have prenatal brain damage directly linked to pre-natal exposure to alcohol and we are currently dealing with excessive levels of worry playing out in all sorts of interesting ways.   Interesting....like the fact that no matter what I do I can not rotate this photo!

Which sort of fits the issue.  Worry isn't something that someone else can solve for us - jut like you cant fix my photo-  its what we do with things in side of our head. How we take ideas and water them, feed them, distort them until they become huge and threaten to overwhelm us.  Adults do it and kids do it to.  This is the workbook I have been using with our crew to talk through the issues of anxiety and worry.  "What to do when you Worry Too Much" by Huebner is simple enough for our 6 year old thinkers and complex enough for the teens  - I like it a lot because it has workbook pages to fill in to make the discussion personal.  It's a hard topic to deal with - like so many that we have to as parents - but its good to have resources.

Anxiety/worry has been a hallmark for several of our kiddos with fasd from birth.  Some require medication, others therapy and they all have benefitted from highly predictable schedules, stable adult behaviors and strong boundary setting.  When those elements falter - like if I drop the schedule and let us stay up too late in the summer and then sleep in until 8 - too many days in a row - then the worry starts to creep back in.  They loose their balance and I can watch them loose ground.  That's when I need to be sure I am stepping alongside the kids to help them use their good coping skills to deal with their problems rather than ignoring or exasperating the situation through my own ignorance.  It's an intricate dance - with them leading sometimes and me leading others -but in the end our goal is to get those worries tamed and back under control.
 

Tuesday, October 7, 2014

The Road Less Traveled ..........

 
Being committed to living a whole-hearted therapeutic life means that I have to keep my ear to the ground, my finger on the pulse and my spirit in tune with where God is taking our family each day.   I have learned over the years that I can try to choose my own paths and ideals for us - but it usually ends up driving us into chaos and disorder rather than the healthy places we long for.  18 year ago I thought that I could choose my parenting philosophy - the big question of 1995 was "do you follow Sears or Ezzo?"   Which looking back now makes me shudder in as much as it rings of the Biblical warning that we should not say we 'follow' anyone but Jesus.  18 years...11 children. Countless  nights spent awake, endless hours in doctors appointments, driven to my knees under the relentless grinding pounding of reality until I learned to learned to go with Gods plans and embrace the beauty that comes with taking this road less traveled by.  The one he laid before me 25 years ago when I first decided to follow Jesus - no matter the cost.  It's so much better now that I can let him be God and I can simply do the things laid out for each day.  Breathing in and out - loving, serving, teaching, training, sharing, growing, healing and trusting him in all things.  This I can do as I enjoy walking with my children down the road less traveled.
 

Thursday, October 2, 2014

A Promise Is...... Pathways of Healing Through Trauma....

Trauma can knock the legs out from under kids.  It may take the foundational realities of their world and shake them until their teeth rattle and their heads spin.  It can be like a tornado dropping down out of a clear sky or the slow dripping of water in a cave - either way it leaves them unable to understand the devastation of the world they once knew. 

Even if that world looked to the rest of us as abusive, empty or hopeless.  If they were child soldiers or left in cribs for days on end.  It was their world - it was 'normal' and something that they understood the rules to - no matter how much we thought that they needed rescuing - they probably didn't think so at the time.   And they may never agree that our involvement was a 'good thing.

Trauma isn't always dramatic and disruptive  like adoption or abuse - it can be simple like an extended illness, moving, divorce, a disabled sibling, a car accident or getting lost at the Mall of America. Trauma happens to everyone at some point in our lives- but for some people the effects carry on far past the usual recovery period and the basic fiber of their life is changed.

For those of us who are loving and living with children who are struggling with long term trauma issues the dance of attachment becomes second nature.  We realize that the same tools we learned  from Adoptive Parent Intentional Parent  - are really applicable here.

Especially the big one for me - Get your own stuff out of the way first

After all - how can I parent traumatized kids well when I am freaking out and reacting in trauma mode myself?

This homework paper from my sons second grade class is a great reminder for me of this exact chalenge.  I need to be a mom who can be trusted to keep her word.  A woman who's 'yes' is 'yes.'  Who's 'no' is 'no.'  And who's  'I have no clue' means that I am truly at a loss.  It also reminds me that I know and belong wholly to God who always keeps his promises NO MATTER WHAT I believe, think or feel in the moment.

I think for family devotions tomorrow we will make a list on the white board of as many of those promises as we can....because we can't control the hard and scary things in our life but we can depend on the on who is over them all.