Jumping off the cliff

Hello there.  I have had to take a little break for a while, mostly because I wasn't ready to say what needs to be said.

I knew it was going to happen.  I knew it was going to be quick and decisive.  I knew it was going to be really hard.  But yet, I was not at all prepared for what happened.

After county level multi-agency meetings and staffings and such, on December 7th I got a call from CPS that they were going to take KC into their custody for safety reasons.  The call came 5 months after I made the first call to CPS to ask for help in the most humiliating and demeaning way that they make you go about things. The call came 4 months after the CPS worker and her supervisor assured me over and over that there were no safety concerns in our house and told me that I needed to just be a better parent.  It was the call we needed so desperately to receive, yet it created a chasm that may not ever be bridged.  I hope and pray that the call did not come too late. 

KC moved within the hour to a residential treatment facility here in the same town.  I don't like the facility, but I like the proximity.  I'm not certain it is going to be a place that helps KC achieve her maximum potential, but its safe.  Most important of all, KC really loves it there and is comfortable.  She never waivers when she says that she doesn't ever want to come home, even for a visit.

AJ is heartbroken.  In her world, her strongest and most spoken rule she has is that we must stay together as a family.  When I first explained to her what happened, she asked if she would have to leave if she was naughty.  (I thoroughly explained that KC isn't naughty and that she needs extra help.) Then AJ asked if I was going to hurt her now.  It took me a moment to figure out what she was really saying.  You see, AJ has never lived anywhere that she didn't get hurt.  (Except a short stay in an amazingly wonderful foster home right before she came to me.)  She lived the first three years of her life in quite a perilous situation with her birth family.  She wasn't scared of being hurt, she expected it.  Now that KC was gone and not going to hurt her anymore, she wanted to know who was going to hurt her now.  Since I am the only one left, it must be me.  Sweet, sweet girl...I have failed my number one job...to keep her safe.

For me, the grief attacked the moment I heard the words. The thing  that I needed most, was the single most painful and the very worst thing I could ever imagine.  There's no protocol as to how to deal with this.  There's no plan.  I like plans.  I like preparedness.  I also like being in control of my emotions, but that wasn't happening either.  It took many days before I was even able to semi-function, and I'm still really struggling with day-to-day tasks.

I struggle with my new role...whatever it is.  How do I parent a child that lives somewhere else?  How do I steer her to all that is good and holy, when there are 20 staff steering her too?  How do I stay connected to my child with Autism, when Autism makes it difficult to have any connections at all?  How to I ensure her safety when she is living with strangers? 

So, here we are.  We have jumped off the cliff into the chasm of the unknown and unfamiliar and we are trusting the Lord to catch us.  He makes all things beautiful in its time. (Ecc 3:11)

One day we were leaving a visit  with KC and AJ asked (again) why we couldn't bring Sister with us.  I explained (again) that Sister needs to get more help.  AJ simply said, "But Mommy, that makes my heart fall out."  Mine too, little peanut, mine too.  I trust that our hearts have been broken so God could remake them even better. 

It's the Most Wonderful Time of the Year??

HA!  Any autism parent will likely contend that the entire month of December is truly NOT the most wonderful time of the year.  Some of you parents of neuro-typical children may wonder why we can't just relax and enjoy the holidays.  Let me try to explain...

I love Christmas.  I truly, truly do!  It used to be my very favorite holiday.  Then along came KC.  You see, kiddos with autism like routine, and structure, and sameness.  With the holidays you get change in every routine while we try to fit in extra parties and programs and special visits.  Out the door goes structure and sameness.  The sights, sounds and even the smells are all different and over-the-top.  People with autism typically cannot filter out background sights and sounds and smells and so it's all just overwhelming. 

When you add the sensory overload to the anxiety and anticipation of getting presents that you may or may not love, it's really just horrible.  At our house (and I would wager in many autism homes) all of December is like taking a month-long vacation to Meltdownville. 

Considering our family was already in crisis mode, I am not certain we will last the whole month.  I am trying to think outside of the box and make things easier for KC while not short-cutting AJ's Christmas experience.  It's a tricky maneuver, indeed! 

Maybe AJ can go see Santa with Gma & Gpa?  Maybe we can have our household family Christmas gift opening BEFORE Christmas thus alleviating that anticipation earlier?  (Like, um, tomorrow?)  Any other suggestions out there?? 

Changing My Identity...

Who are you?  Who are any of us?  Lost, broken people in a lost and broken world.  Struggle and strife are a sure thing for everyone.  But God uses that hurt and makes it into something good.  I wonder if the deeper pain makes for even more good? 

Throughout this time of crisis at our house, I have learned more about myself than I ever wanted to know.  Some of it is not pretty.  (But we'll skip over that for today!)  I've found that I identify myself solely as mom.  I am KC and AJ's mom.  But I really am so much more. 

Looking forward to the next 8 weeks there are going to be two life-changing events.  KC will be moving to a safer place and I will be having bariatric surgery.  The first is truly deeply painful and the second is truly deeply wonderful.  (Coincidence?  I think not!)  Both events are going to change who I am to my very core. 

I am excited to see what is going to happen.  I am eager to have God rebuild and remold me from the inside out.  Embarking on this journey is going to be life-changing and I can't wait (impatient much?) to  find out who I am going to be.  It feels like a second chance at life! 

If you could have a fresh start in your life, what would you change?  How would you redefine yourself? 

Am I Less?

I have taught and will continue to teach my girls that they are no less than anyone else.  They are beautiful, treasured and important creations of God.  They have very significant things to do in life.  They matter.  They count.  But what about the things I tell myself?

I have 'quirks' in every area of life.  I am not like the vast majority of people.  I am single when I should be married.  I am fat when I should be healthier.  I am a conservative Christian when it's more popular to be liberal.  I am sad when I should be happy.  I feel alone in a room full of people.  I pour out my whole heart, all of me, all of everything I have to others and leave none for myself.  

So this last year I have begun to address these issues:  

• The singleness...ehh.  Not a problem, move along.  
• The obesity...  Big problem (pun intended).  I started in a comprehensive weight management program 9 months ago.  After MUCH research and hard work and preparation, I have a gastric bypass scheduled in January.  Throughout this journey towards health I have learned a lot about what I need and what I don't need.  I need me to be nicer to me.  I don't need to make everyone happy.  
• The conservative Christianity...This is to be treasured and well-cared for, and is only a problem to the evil one.  
• As for the other things, they all come back to how I view myself.  

In the midst of our current family crisis with KC, I have had to really think hard about what and how I feel.  I think I am less of a mom than I should be.  A mom should be able to take care of her children.  Instead, I have had to make the gut-wrenching decision to have KC move elsewhere, both for her safety as well as the safety of AJ and I.  It's NOT a choice I want to make.  It's the choice I HAVE to make.  I will always be KC's mom.  I am not terminating my rights. I am not walking away.  I will continue to fight for her and along side of her for her whole life.  Yet, somehow, it changes who I am.  

This post seems kinda all over the place, but hey, that's life!  It's all connected and each piece means something.  So as I work on my own perspective of life, I wanna know... how are you gonna be nicer to you today?  I'm pretty sure that I am not the only one that needs to think about that. 

Finding Words

Yesterday, I said I would fill you all in on what's been keeping me extra busy lately.  The trouble is I am having a hard time finding the words.  Or maybe I'm having trouble putting it in writing.  It makes it more real.  Maybe its that words can't hold it all...it's just too big. 

I know there are people out there in cyber world that have gone through the same things.  I know there are some of our loved ones that are wondering what has happened.  I know that our story is worth sharing...that it may help someone know they are not alone.  So I will try.  Maybe just a little at a time.

I have told you previously about KC and her explosive behavior.  I have also eluded to the effects of her behavior on AJ and I.  Those effects are difficult to label.  Those that have tried have called it PTSD, although there is nothing "Post" about it.  It is ongoing and will continue possibly forever. 

AJ seems to be handling it well, for now.  But I have been doing this for nine years.  I, alone, have been the on the receiving end of KC's rage for all that time.  It has changed me.  It has made me become someone I don't even recognize.  I fear that the changes in me may be irreversible.  (Please know, I am not accusing KC or blaming her in any way.  She has a mental illness and developmental disabilities and cannot control what she does. Oh, and I love her with all my heart.)

No matter how much love and therapy and things both material and immaterial, it's not enough.  It is a terrible feeling to come to the conclusion that you are no longer what is best for your child.  I cannot keep her safe from herself.  I cannot keep AJ and I safe from her.  I can no longer continue on this path that leads to destruction. 

So last night, during her meltdown, I had to do the thing no parent should ever have to do...ever.  I had to call 911 and have the police come over to our house.  They took KC to a safe place for the night.  She was very willing to go and was rather excited to be leaving us. 

This couldn't possibly be part of The Plan!?! You know, the one promised to prosper us and not to harm us in Jeremiah 29.  Because, You know what?  This hurts.  The pain is unbearable.  I know that in the bigger picture this is just another thread in the tapestry of life and God will use this for good.  But it still hurts. 

So how do you keep perspective?  How do you keep focused on the bigger picture in your life? 

Why I (Mostly) Do Not Mind 4 AM...

It's been a while, and I'll explain why that is soon.  But for today I am going to share why I mostly do not mind that AJ gets me up at 4 am.  Yes, 4 am.  Well, in all fairness, sometimes it's 4:30 am.

I am not a morning person.  Never have been. Never will be.  And you can't make me.

AJ is a MORNING PERSON.  As in, a leap-out-of-bed-and-eagerly-begin-to-enjoy-all-the-world-has-to-offer kinda person.  And she does this neither quietly nor very safely.  So I must arise and defend the world from all AJ has to offer.

AJ gets up between 4 and 5 AM.  I have tried everything to get that a little later.  We use extended release melatonin, and Valerian.  I have tried putting her to bed later and later.  No matter when she goes to bed she gets up that early.  But the later she goes to bed the crabbier she is in the morning, so I have learned to put her to bed early so she gets enough sleep.

Things in our reality have become increasingly stressful and even dangerous over the last 8-9 months. (More on that soon!)  This situation has taken a lot of my time, my focus, and my attention.  It is also been necessary for me to keep AJ and KC apart as much as possible. AJ is extremely resilient and easy going and handles it all beautifully.  (Oh, how I wish I could be like her!)

So, at 4 am, it is just AJ and I.  We get to enjoy the quiet world and all it's goodness all by ourselves.  We get to giggle and dance and watch cartoons.  We don't need to walk on eggshells.  We don't have to brace for impact (physical or psychological).  We get to be us.  And that is worth getting up at 4 am. 

Divisiveness

Yesterday I shared about AJ.  Today I'm going to let you know about my oldest daughter, KC.

As I had mentioned before, I adopted KC 9 years ago.  At the time, she had a diagnosis of autism.  She still does, but now it's pared with anxiety disorder, ADD, RAD, PTSD, and an unknown psychosis (still working on nailing down a diagnosis there). 

All of these issues create a nearly impossible situation.  KC is my sweet, sweet little girl stuck inside a mind and body that wants nothing more than to put an end to all that is good and right with the world.  Not only does it tear me apart as her mom seeing her struggle so hard, but also as AJ's mom.  Daily, AJ and I are in harm's way, never knowing when KC's explosive behavior may erupt. 

We do have help and an amazing support system.  We have counselors, therapists, psychiatrists, neurologists, neuro-psychologists, coordinated service teams, behavior specialists,  children's long term support specialists, family crisis specialists, family support specialists, etc... In other words, way more people sticking their noses in our lives than I am comfortable with!  :)  I wonder if it's helping?  We still are not safe.  KC is still barely surviving the tumultuous storms inside her.  I just want my baby to know joy and love and peace. 

So, we are beginning to travel into some new arenas.  We will likely start with cranial-sacral therapy and then add some neurobiofeedback.  Unfortunately, many of these services are not available in our local community.  So, some traveling will be in our future. 

Anyone out there have any experiences with these therapies?  What is your opinion of these alternatives? 

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."  ~ Isaiah 41:10

Hope

My sweet little AJ has a genetic deletion.  She is missing all of 12q 13.13.  So far, she is the only case of this exact deletion. For her it has caused developmental delays, low muscle tone, and probable HHT (Hereditary Hemorrhagic Telangiectasia) without any complications. 

I give you this background knowing there are many of you that also live with kiddos like AJ.  And some of you may also need a shot of hope. 

Earlier this week, AJ and I saw her genetic specialist.  After doting on her and indulging in her enchanted play, the doctor went out of his way to explain something.  Something that surprised even me.  He explained that once AJ is an adult, she will have a 50% chance of passing on the HHT to each of her children.  Did you hear that?  That was hope.  Do you get it?  The grace-filled hope that she may be able to have and raise her own children.  I thought I was the only one that saw it.  I thought I was just being the overly-optimistic momma... And that very well may be the case, but I am not alone.  There is a highly well-educated doctor, that's been doing this far longer than I, that believes too. 

What is your dream that seems far-reaching for your kiddos?  Where are you lacking hope?  

 ^"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11
 

AJ at Genetics Clinic - All dressed up!

Where to begin...

Who are we ??  

Welcome to Our Different Reality!  Some of you may live typical lives, with typical jobs, typical homes, typical families, and typical pets.  Others of you may be less typical.  Our reality is, well, um different...and pretty darn amazing!  

My name is Staci.  I am old.  Not really really old.  Just slightly old.  At least, that's what my girls tell me.   I am, first and foremost, a child of the Most High God.  I am mostly quiet, introverted, a care-taker and a people-pleaser.  But enough about me.  My girls are the amazing part! 

KC is 14 years old.  I adopted her 9 years ago.  She loves carousels and squeaky toys.

This is KC

This is AJ

AJ is 7 years old.  I adopted her 3 1/2 years ago.  She loves...well, everything!  

I hope you enjoy getting to know more about us.  I gotta sign off for now, but I look forward to seeing you again soon!