Have You Read The Good News?!

This morning Julie got the results of Elijah's bone marrow test....drum roll please........
The results say that though his body is struggling with rashes, fever and infection he is sporting 100% donor cells!   Wahoo!  This is seriously good news.  Not that he seemed too excited last night as we three mommys giggled and laughed from the corner of his room.  In fact, he prety much slept through our visit.  Which is a good way for this tiny boy to invest his energy.

Thanks to all who have sent gift cards and cash to Mark and Julies Care Team - they are in the sixth week of this journey and your encouragment had really helped them through.  Last week I took all of the cash that was recently sent, divided it into envelopes and wrote the names and phone numbers of local restraunts that deliver to the hospital on the front of each one. 

Lunch money for Julie was the thought as she has to eat three meals a day at the hospital (icky food at outrageous prices which after six weeks is a little....um...tedious?) She liked the idea and I am sure those envelopes need refilling in case anyone wants to help supply one of them.

Thanks also to the friend who sent chocolate covered coffee beans for me - it was a providential gift.

I am also publically apologizing for not sending thankyou notes - I have them here -  and all the best intentions of sending them - but this seems to be the ball I am dropping.  Would you consider yourself thanked? :) Tacky...tacky...me.

One Perfect Day.......

Yesterday was amazing.  Not that it was easy or stress free, not that my body didn't ache from whatever mystery auto-immune issue plagues me and certainly not that the children were perfect.  Yesterday would look 'normal' (if there truly is a norm in a family of 13) to most outsiders and wouldn't have made anyone who doesn't know the depths of our hearts think it was anything important - here are the high points.

• No one (as in NO ONE) got hurt or did anything scary while we had the power tools out to do some home repairs.
• All 11 kids played with friends and no one used bad language or resorted to violence when stress occurred.
• No one talked about hurting them self or others (all day) and the one kid who admitted to having crazy thoughts was thinking about a topic that wasn't dangerous.
• No major tantrums, rages, retaliation or deceit.
• The only person that yelled and threw a fit was me -  and I burst into tears afterward.  (Just a tad overwhelmed by the final stages of the move plus the countdown to school.)  But it was good because I lost it and everyone around me held it together.
• Our TKD class went well and everyone of us was mentally and emotionally present. (nine of us 'on' at the same time....unheard of)
• Medications seem correct for everyone.
• At 10:00pm the moon and sun aligned and I was able to spent the rest of the evening at the hospital with Julie, Elijah and Barb (aka Psycho Mom.)

Life is busy enough for us that we don't often sit in the same room...here we are at 1am next to Elijah's bed. 

It was still a 20 hour day for me, but being able to step aside at the end of it and visit with other moms who are parenting challenging kids was like a mini vacation.  It's not the hard work that makes my job exhausting (though it is hard) but the emotional stress of always having my radar up, my eyes open and my heart prepared for wherever is coming next. 

Tell Me When To Pack: A New Blog to Introduce......

My friend Noel is having a great time in Australia this week - she is at a wonderful stage of life (her yougest is 16) and has started a new blog to share the fun and adventure of traveling with and without her family.  Check out her new travel blog Tell Me When To Pack......

"The Hardest Thing To Do.............."

Last winter I shared the good news that Penelope Wilcock's fourth book in the Hawk and the Dove series was to be released this July.  My copy came on schedule through Amazon and I have been slowly soaking in the first Forty Six days of Brother Johns new role at the Abbey.   As I closed the final page today I was struck by the reality that the story she told in 'The Hardest Thing To Do' was much the story of our life. As the parents to kids with serious neurological/psychological/physical challenges we are called to intentionally chose the pain (as well as the larger Christ-like joy) of Gospel living.

But it isn't easy.
And it often isn't pretty.
We are judged,
Criticized,
and sometimes abused.
As are our children.

Our place is in the world -
but most of the world doesn't know us.
Or see us,
Or our kids.
And they blame us.
For things no one would ever wish on a child.
A child who will be an adult - and still be unseen.
For damage
For things no one can change.
For the horrible pain-filled reality
That some people,
Some things,
Some realities.
Are for life.

And there is only one way -
through it.
And only one God,
And only one hope,
That we (and others)
Will do that 'Hardest Thing'
And love the unloveable,
Reach the unreachable,
and hope the unthinkable.
All the while walking though their darkness
with them.
Because none should have to walk alone.

Summer Chores Don't Wait.........

It's 28 days since we moved back into the Old House.  Mornings have gone from the hazy warmth of midsummer to the sudden crispness of fall and even as we are unpacking boxes the warning of winter is hanging over us.  Last week we hired a neighbor to help the boys and I as we sanded and stained the porch and surrounding garden timbers.  It took us two days and was a wonderful break from boxes.  This week we will finish the project by repairing the top of the pergola and staining it too match.  Oh the temptation to dive right in and do that project this morning rather than facing the mountain of paperwork on my desk!

Nate - a man who can appreciate working with little men - even if they sand the copper post caps.

The light posts are new - I found the caps at Target on clearance and bought two 4x4 posts at Home Depot - love the fact that they will cut them for you for free. :)

Celebrating The Theft Of Two Cans Of Soda.....

While putting away the leftover lunch today I discovered that my two cans of Coke - a special mommy crisis reserve - had both been opened and emptied.  Soda is a rare thing in our house so every child was aware that they were in the refrigerator and I was pretty sure my husband hadn't drunk them since A. he would have recycled the cans and B. one of the cans had a ring of chocolate zucchini cake crumbs around the pour hole and my guy isn't the type to swig two cans of coke with a mouth full of cake.  Those crumbs narrowed the time of consumption considerably since the cakes were last nights dessert...sometime since 5:00 last night my soda had been emptied.

So I rounded up the usual 11 suspects and asked the question 'who knows what happened to my special soda?'  Among the regular chorus of 'no idea' and 'not me' I heard a lone voice say 'I drank it.'  Which was enough to make me give the kid a high five. 

So do you think that was a strange way to deal with the theft?  Most of the world would think it was  - and that I was an utterly foolish parent - but here is the rest of the story.............

This particular child has PFASD, anxiety issues, a borderline IQ and serious LD's.  As long as I can remember we have struggled with theft issues (which we call 'taking' because he really functions under the toddler rules of engagement vs the pre-teen ones.  You know, the 'If I see it it's mine, if I want it it's mine, If I used to own it its mine..' lines of logic.)  But it was HIS voice admitting he had taken the soda.  For him, because of his fear and memory issues , lying is a far greater problem than the taking.  But today, for what might be the first time, he admitted he did it without all the drama and threats that past events have necessitated.  I was thrilled and let him know it.  Of course I also made him pay me a dollar for the sodas (which he figured out was four quarters - a double celebration going on here) but I realized that we are past a major hurdle.  He even remembered and admitted to taking the cake when I asked what else he had taken last night and was able to tell me what the rest of the family was doing while he was in the kitchen alone. 

I have never been so happy to have something naughty happen, because it shows me that the years of repeating 'it is better to tell the truth' is starting to soak in.  Not that it will change the initial behavior - but taking responsibility for his own actions is huge, especially as he enters the teen years.

It's The First Time I Wished I Could Say We Were A Daycare........

One of my favorite questions from strangers is 'are you a daycare?'  I love the look on peoples faces when I say 'no - we are a family' and the confusion that results when they count 11 kids with such diverse ethnicity.  I can see the light of understanding flicker on as they grasp our reality and a subtle shift in manner as they contemplate if they would ever consider adopting 8 kids.

Today was one of the first times I wished I could say ' why yes this is a daycare!'  It wasn't because I didn't want to claim my kids, it was just that sinking feeling as a representative from the city stood in my living room revealing the fact that some of my children - one being old enough to be held responsible - have been throwing rocks and other things at the garbage men.  Bad enough for the city to send someone around to deal with it.  Bad enough for me to not want to face it.

It was just a FASD face-slap sort of day.  The type of day that those of us who live in this world understand...a bad nights sleep....a change in the routine...the need to take 6 people in for eye exams and to pick up glasses smack in the middle of nap time....a rope snuck out of the garage for an unauthorized rough game of tug-of-war....a saw blade discovered and used to cut things in a bedroom...the list goes on and it was crowned with the visit from the trash supervisor.  Over all it wasn't a bad (FASD) day - there have been way worse.  But it has been a good reminder that as 'normal' as we look to the larger world - were not.

Healing Has Begun...........

The game plan this week is to put most of the unpacking behind us and move into the Fall semester without the constant pressure of disorder.  Moving this family is a massive process - organizing our life so that everyone and everything can be safe and have their basic needs met just escalates the situation.  Like the kitchen?  That would be lunch on the bench (COME AND GET IT!) with every toy and game our family owns piled on the table behind it. 

But there is visible progress.....the office/school area is organized and ready for the new school years materials.....

New bookshelves and chairs are replacing those I left behind in our 18 months of traveling... and things broken are being repaired as fast as possible.

And most importantly the kids are starting to unwind and relax into the safety of their familiar home and relationships they have carried since birth.   For some it's a process of totally falling apart and for others it's just a subtle drop of the shoulders, tilt of the head or most exciting of all - the ability to function on a lower dose of their anxiety medication.  

It is so overwhelmingly good of God to bring us back - back to the place we are known, loved and accepted for who we are.  I even saw a little dancing at church last Wednesday night....a tiny reminder for me that the healing has begun.

Tea For Me?!

It's game time again....since summer is quickly winding down and most of us are in total denial over the fact that school starts in under three weeks (especially my cohorts who home school) I think it's time for a little fun and a break from all the drama.

Yesterday I received an email from a reader out in California who offered me the opportunity to sample their boutique clothing line in exchange for a little blog exposure. (much more delicately worded of course!)

So I clicked on their link.......

And loved what I saw over at Tea!
Which is where the fun begins for you...what did I order?
Three hints....I ordered more than one item, the total was under $150.00 and you can click on the photos to link over to the item descriptions..I am also not promising that what I chose is pictured here!

An awesome sweater........

Or  hoodies for the boys.....

A Sister set......

Or a shirt and scarf for my meager (but versatile) collection...

Or this favorite tunic dress straight out of my hey-day in the 80's?

Guesses anyone?

(I will post photos and a review of our order once it arrives...until then - anyone want to fantasy shop with me?)

I So Did NOT!

After lights out last night a brawl erupted in the boys bedroom.  No punches were thrown but the levels of testosterone were pretty high and there were tears and shouting.  Due to the nature of our team I tend to de-escalate scenarios like this and then, once everyone is calmed down, try to figure out what triggered the excitement. 

Last night the problem was identified as a loud 'clapping' noise in the dark. One child with autistic and FASD type behaviors was denying that he clapped or slapped anything and that he was being wrongly accused.  Another with FASD related behaviors as well as sensory issues was hysterical over the fact that the first one DID make that loud sound and that he was denying it.   In the end I was able to determine that the first child had hit the side of the bed (not slapped or clapped but hit) and that he was passionately denying the way the noise was made, not the fact he made it.  Hence our problem and the escalation.  The first child couldn't make the logical leap past the second child being wrong about HOW the sound was made in order to deescalate the conflict over the fact that he had indeed made the sound.

Which is an interesting thing to teach a child with these particular challenges - how to see the forest through the trees.  At this point, unless the facts are absolutely 100% correct there is no way he will ever admit to anything - be it plugging the toilet, taking money that isn't his, hitting someone or making random sounds in the dark - because in his thinking he didn't do whatever it is unless you (the accuser) has every single piece correct.  There is no room for 'yes I did it, but.....' 

Reversals and The IRS..... Wahoo!

It's starting.  Adoptive families who were denied their (rightful) adoption refunds this Spring are now starting to see their fines dropped and their refunds approved.  So far there doesn't seem to be any rhyme or reason to the ones being reversed.  Except that they were all correct in the first place.  Don't give up all you who have been denied and are suffering through the IRS process.  I still haven't walked through tax court with any families but the timeline is right for their cases to start hitting.  Please let me know if you have hearing dates so we can track what happens to the ones that go that far.

An End In Sight.........

16 days since we moved back into the Old House we are starting to see an end to the chaos.  Boxes are emptying, pictures are being hung and best of all the kids are settling into a routine.  This week is largely committed to repairs and maintenance.  So far I have ticked off repairs to a faucet, shower, claw foot, fence, door and several windows.  The repair man came for the stove, dishwasher and both furnaces and I have ordered parts for a few smaller projects. 

In the middle of moving I am juggling the reality that our school year is starting August 29th with a week of standardized testing - seven sets of tests are on my window sill and a fresh box of pencils.  Each day the UPS man is delivering the books for fall and suddenly I feel the freight train that has been bearing down on me for months slowing down.

What an amazing feeling!  Even as I pull my head out of the boxes I can see the amazing ways God has orchestrated this whole season so that we can converge here and move forward with confidence.  More on that later....now I have 11 hungry kiddos, eight boxes and two doctors appointments to fill the morning.

Payback On Intentional City Living.......

Some of you know Tony in real life - most of you don't.  Because of where we live and the relationships we have within our community he became  a member of our family for about 24 months when he was 16.   It's been a few years since we last connected with him but last weekend Dearheart and the boys took him with them to the Fargo airshow.  They had a great time and the joy I see in this video clip he sent back for us girls makes it all so worthwhile.  When we first met Tony nothing was for sure...now I see a handsome, confident young adult.  He is a  survivor and an affirmation that our city life isn't in vain.

Loving Them: No Matter What Happens.....

Known. Predestined. Preordained. These are the words which I cling to on the days when the reality of my children's disabilities slaps me hard in the face.  Without them I would simply fall on the floor in a puddle and wonder 'what have I done?'  With them, I can keep moving because I haven't done anything - this is all a part of God's good plan for my days and my job is to do my best.  Then...when I have experienced this life and my work here is done ...there will be heaven.

In many ways my life is perfectly normal.  I drink coffee with girlfriends, take walks with my kids and prepare for each season of life as it rolls around.  In other ways I am living in a separate world.  One where my friends and I casually talk about anti psychotic medications for gradeschoolers and where the best pre-teen inpatient mental health units are.  As a mom to kids with FASD's I live in both worlds, but the most sobering discussions are those where we talk about what we want our friends to share with our kids if they intentionally or unintentionally kill us. 

It's sort of a strange conversation but it pops up in casual ways...."Love your new sweater, need to run in ten minutes, by the way....if x child ever kills us in a rage or due to an impulse control issue (like a fire) please be sure to let them know we weighed the cost long ago and that it doesn't change the fact that we love them unconditionally." 

It's crazy to say these things out loud.  But the truth is that I want my kids to know we love them - even if we can't tell them ourselves - and because of their FASD's, genetic programing and secondary issues their mental health is not guaranteed to be stable.  It's hard to think about, but now I have put it out here on the blog I'm trusting of you to point it out to them if there ever is a situation where we are not able to assure one of our children that they indeed are loved and precious.

Blessed When I Am Allowed Into The Suffering Of Others...............

I am overwhelmingly blessed when those who are suffering allow me to step into their world and bear part of their load.  Mark and Julie are doing an amazing job of allowing others into theirs - by blogging, being vulnerable and trusting us to meet some of their most basic needs they are blessing us beyond measure.  Which seems a little awkward in today's world...they are in crisis...we find ways to help...we are blessed. 

Which isn't a typo - it's exactly what I intended to write and in my life it is the truth. 

Suffering brings out the elemental aspects of my day.  It's the salt that sharpens the easy times as well as the hard. It's the stretching and testing which allows me to survive the major crisis as well as the grinding, daily things that wear me down.  Suffering is important - it's the tempering that strengthens.

I am blessed when Julie and Mark allow me to feel their weakness.  Their absolute dependence on the Unseen God as they walk each day knowing that Elijah's life truly is in His hands.  By wading ankle deep into the pool they swim in 24/7 I am reminded again and again that there is nothing by chance, nothing random, nothing that surprises or is out of the control of the God I serve. 

Nothing.

Only One Thing To Say Today............

I have lots to blog on but not much time so I will stick to the one question foremost in my mind today.....why did someone pee on my electric toothbrush this morning?  Yes...they really did...and now I know not only what pee smells like but what it tastes like also.

Pictures From The Past Week............

Moving back into the Old House meant removing some things that the last owner left- like 18 months of bathroom dirt and finding things I really didn't want to explain to the younger boys (those funny balloons that come in flat packages) as well as laughing hysterically as Kudu paraded around in this platinum wig..

 We also had to replace things that he took with him...it is so good to have friends willing to assemble the IKEA counter we needed to replace in the kitchen while we built beds on the second floor, others built shelves in the basement and every child packed according to their own abilities.

 Since we started moving in Monday night it made perfect sense to have a Block Party 24 hours later for NNO.  Almost all of our favorite neighbors stopped in and it was a perfect way to celebrate our return to the Old House and God's amazing provision in our life. (Even down to the day the AC would break - there would have been no wild bubble display if it hadn't been running.)

Emotions vs Behaviors.....

All of the weeks chaos culminated in a behavioral meltdown for one of the older boys while Dearheart and I were out on a date Saturday night.  This child was seriously upset by the ongoing disruptions to his regular schedule and though it was not a rage - it was an out of control - choose bad behavior over good because it made the outside (behavior)and inside (emotions) match.  On one hand it was progress because this kiddo tends to stuff his fear and anxiety under layers of silliness until it overwhelms him and he becomes a paralyzed puddle in the corner. On the other hand, it put the rest of the family and the babysitter at a definite disadvantage. 

Sunday we had a good talk with this guy about the difference between emotions - which are hard for everyone to control and behaviors which everyone is expected to limit in order for our society to work well.  Part of the discussion was acknowledging that FASD's can make behavior management really hard at times - especially when he is feeling unsettled and out of his routine, and finding ways that he can help us identify those feelings before the behaviors escalate.  We also touched on the fact that regardless of what is happening, he is still responsible for the things he does.  It's a hard balance to keep - the appropriate amount of compassion to mix with the right level of accountability so that he can learn but not be beaten down by unfair expectations.

The good news is that today he was much more regulated and the manic edge was almost totally gone.  Today was a good day for this guy and his mom.

Here is a blurry photo to show that we really did dress up and leave the kids for a few hours...

Moving With FASD Is No Joke...........

Our kids with FASD's and ASD's are falling apart under the stress of another move - I have tried to lessen the impact by only doing a little each day, but the strategy is failing and the cracks in our emotional stability are starting to look like chasms. 

Not that anyone really enjoys moving - but this week our house is a three ring circus of acronyms and out of control behaviors. It isn't pretty and it's starting to wear me down. (sure indicators that the mom is wearing thin?  I just yelled at one of the most affected and anxious ones - totally useless and harmful reaction on my part for something utterly predictable on his - no gold star for therapeutic parenting on my chart today.)

Which means that I need to manage/medicate/and move as fast as possible for them to get back to a place of order and routine.  Blogging will just have to wait.............


(Update:  I hired me a strong man to move boxes!  My own are at a conference and unable to help....WOW what a difference it is to have another strong set of arms help move this mountain!)

Home Again....

It is so good to be home.  Even with broken doors and piles of work to be done.  Regardless of the silly games the 15 month owner chose to play and the daunting task of having every single piece of our families possessions pass through my hands for the fourth time in 18 months....it is good to be in the place where we are so obviously loved.

As soon as I find the cord for my camera I will upload photos of the move and our National Night Out party which fell on our first day back.  Until then we are slowly moving our life across the street, one laundry basket at a time.