Monday, September 12, 2016

My First Post

Here is a link to my first post on our new blog, Uncommon Noggin, which is the shared blog for Kenny and I where we will discuss FASD.  Kenny will probably be posting about twice a week as time and brain function allow :-)  I will be posting there about once a week, and will link here as well, though I will continue to blog here, too about the same old family junk I always write about! Haha!  I know I have yet to get back to true blogging form, but the first couple of weeks of school have been about getting into routine and Mom getting caught up!  Will be writing far more often in the weeks to come...aren't you just SO excited about that? (she asks with her voice dripping with sarcasm, knowing no one is breathlessly anticipating my next blog...hahaha!)

Getting Kenny's blog up was first and foremost on my heart, as he has needed a place to share things right now, and maybe, just maybe, it will help someone else understand their own child a little bit better.

So, for now, here is my blog over there:  http://www.uncommonnoggin.com/home/a-new-kind-of-learning-cindy

Talk to you all more in depth soon!

Thursday, September 08, 2016

A New Blog

For awhile now, Kenny and I have pondered creating a blog where we could share our experiences around Fetal Alcohol Spectrum Disorder.  The past few weeks since returning from camp have been some of the hardest Kenny has ever had.  He has suffered from complete cognitive shut downs, a total inability to access information seemingly at random times, and a far worse functioning overall than we have ever seen out of him.

Today was a bad day...a very bad day...a break down in tears-can't explain what is wrong-nothing is working kind of bad day.  Honestly, Kenny is terrified, scared that this current "hiccup" might be permanent, afraid that he won't get back to his normal higher functioning self.  It has also shown him just how dysfunctional his brain really can be at times, and as he is a little older now he is more self aware, and that is equal parts good and bad.  

We are used to these fluctuations, these hills and valleys of functioning, often lasting 3-4 weeks and then he comes back into himself for awhile.  But this is different, and we all know it.  We spent almost an hour today at the school table with him sobbing, unable to understand what we were learning or even saying.  Absolutely nothing was making much sense.  Later, it was like it never happened, though he is not at all his usual sharper self.

Desiring to give Kenny a forum to share what this all feels like, and hoping it may calm his nerves a bit to write about it, share it, maybe receive some encouraging feedback, I decided to move forward immediately with the blog.  We hope it may help others understand the pain and heartache of walking through the world with a broken brain that works beautifully one day and totally stops the next.  Maybe Kenny can even provide insight to parents of FASD children who are younger or less articulate.  

Here is a link to this new blog.  I will be writing occasionally there, and Kenny will as well.  Kenny's posts will be uniquely his voice, unedited by me, and he will address questions, talk about his day to day life, and share his heart as best he can.

Would you consider visiting this new blog, reading his first post, and offering a word of encouragement?  I will share links here regularly to posts there, but hope you will become a regular visitor of his.  If you have a question for him, please email me at CyndiLJ@aol.com.  You can also join our closed Facegroup page for the blog where I will help Kenny address comments made there.  Here is the link to the blog:  Uncommon Noggin   and here is a link to the FB page, where we will post a notice of every blog post:  Facebook Group for Uncommon Noggin

I am going to try and keep posts here about FASD and our challenges to a minimum, and use this space more for general family updates, and not let it devolve into FASD Land.  The way things are going right now, that might very well happen if I am not pro-active.

Thanks so much for considering checking out Kenny's writing!

Wednesday, September 07, 2016

On Turning Fifty

For all those who think I too often portray our life together as "idyllic" or "too good to be true"...keeping it real here.  NOT a pity party, but being honest.  It's how we roll.  I haven't posted in a long while because, well, I simply couldn't find words.
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Fifty Years Old.

Fifty years of life lived, of wisdom gained, of tears shed, of hardships endured, of love offered.

A couple of weeks ago I turned fifty, a day like any other, and yet not.

The lead up to my fiftieth had honestly been some of the hardest days and weeks I have been through in a very long time.  No major event caused the heaviness of heart I felt (and still do to some degree, if I am honest), and it had absolutely nothing to do with my advancing age.

We have simply had the hardest, most painful, grief filled, achingly sad summer on record with our beloved ones.  While there was still a fair share of laughter and fun, time after time hours were spent in conversation as pain poured out, as doubts were expressed, as old lives were revisited, as futures were contemplated, and uncertainty hovered.  Sobs escaped over and over, bodies barely able to contain the survivor's guilt and concern for classmates aging out, the wondering if birth parents ever wanted them, the deep rooted fears that one would wake up and their entire family would have disappeared...and that happens every single day in life.  There was the despair over a life that will never, ever be "normal" and what that means moving forward as well as what will be missed.  There was also physical pain that feels unending for a very dispirited Matt as his back has flared up again and he is severely limited in his ability to move.  We have no answers, which is frustrating and demoralizing for a 17 year old young man who has had most activity limited since he was 9 years old.

My own heart absorbed more than I thought was even possible, a sponge whose ability to take on more was now completely incapacitated.  That uncertainty still hovers, and I had no answers to offer, only mere words and arms to hold and comfort as best I could.  It wasn't enough, it never is.

All of it was good, despite the sorrow. Truly it was.  The processing at a new developmental stage is a must, and is a sign of healthy emotional work being done, but few would ever understand how darned hard it is to get to the joy.  Most would look at our kids' ages and think the worst is over, I don't blame them, I did, too.

Oh, how it isn't...

Then there is the logic that simply won't kick in at times, explanations that take 30 minutes or more to understand because things are forgotten, misunderstood, misinterpreted.  Circular discussions caused by defective processing that is, honestly, almost mind numbingly hard to deal with day in and day out.  Guessing meanings, trying to interpret and discern what is really trying to be said...our three who came home older and whose brains were damaged by alcohol exposure, neglect, trauma and institutionalization are sometimes puzzles that take an enormous amount of brain work on my part to make sense of.

The simple truth is that there was so much gripping my heart that I barely gave fifty a thought.  For the first time in my life, I felt like I was sinking into a deep depression, born of mental exhaustion and compassion overload.  We have been at this 16 years now, to varying degrees, and I have never felt this overwhelmed by the unknown and the known.  Thank God it is not due to behavioral issues, anger, defiance, or anything of the sort.  It is simply due to the hard work of healing, and of working with special needs kids.

One night about three weeks ago, I wrote a couple of friends and explained I was just not handling things well, I asked for prayers, I wanted it known I wasn't ignoring anyone but was really in a bad place and feeling like I couldn't pull myself out. It helped a little to be open and share a few details, to feel like my load was being carried a tiny bit by others who care.  I've never considered myself to ever be depressed in the past, but this sure felt like it.

The next day though, God stepped in, and helped lift my heart just when I needed it most.  An elaborate plan had been hatched to throw me an early surprise 50th birthday party, no one realizing the timing couldn't have been better.  Loved ones and dear friends gathered to wish me well, and wrap me up in a cloak of love more desperately needed than any of them knew.  I had absolutely no idea anything had been planned, and thought I was picking up the kids at a friend's house where I had been told they had been weeding.

There, in the very heart of my community, I was able to rest for just a little while.  I was able to smile, to laugh, to feel like my own tank was being filled up just a little.  That God knows exactly what we need and when we need it continually astounds me.  I was showered with cards from friends near and far gathered via Facebook, I was serenaded, I was hugged...a lot.  It does nothing to change the circumstances, but it did so much to change my feelings of defeat.  How can one feel alone when joined heart and hands with so many others who truly care?

And sometimes, just knowing we are not alone, is enough.  Sometimes, even if others can't possibly understand your life's battles, all we need is to be held in God's arms attached to the bodies of very real human beings in order to heave that sigh of relief and know that...for the moment...all burdens can be set aside.


A Birthday Sunshine just for me!


Uh...yea..."glamour" shot...(Not!)


How I love this woman, our wonderful, supportive Miss Mary who has been by our side virtually from the start.


 Two of my best buddies, Candi and Mary, who plotted and planned along with another dear friend, Kim, and Dominick.  And somehow, the kids never let out a peep!  For Kenny and Olesya, that was quite an accomplishment!  However, Kenny did sheepishly 'fess up afterward and admitted he totally forgot about it.  We laughed and he pointed out how his memory issues can be a benefit sometimes :-)


Hearing the impromptu choir sing "You are my Sunshine" with lyrics altered just for me.

So, how do I feel about turning 50? 

Grateful to be alive this long.  Wiser at moments while at other times still scratching my head trying to figure this whole "life" thing out.  Deeply loved by the single most amazing family on earth, something never guaranteed anyone.  Hopeful that the Spirit is slowly hoisting me out of the abyss.  Indebted to friends who continue to stand by my side despite the fact that often I am not the most attentive or present friend in their life.  

What have I learned about life in 50 years?

Though it took me years and years to learn it, it finally sunk in that love really is the only answer, that responding angrily, violently, or with a mean spirit does nothing but perpetuate negativity.

I have learned that I need community far more than I ever envisioned in my younger years when I had virtually none.

I have learned that I can carry far more than I thought.

I have learned that I mess up every.single.day and am not deserving of all that I have in my life, but humbly appreciate it all.

I have learned that one can rise above one's beginnings, one can change generational patterns.

I have learned to say "yes" to life and to God's call...and to ignore the naysayers who would try to stop you, all because they would never say "yes" to what you would.

I have learned that I like tackling hard things, even if only mildly successful.

I have learned that bearing my heart and willingly being vulnerable results in deeper, richer relationships than I ever would have imagined having in my life.

I have learned that "average" is nothing to fear, and ought to be celebrated far more.

I have learned that "perfect" is highly over-rated.

I have learned to listen...to watch...to pay attention and be awake in the world.

I have learned to be present.

I have learned that my life doesn't have to resemble anyone else's.

I have learned that I can look a stranger in the eye, be it child or adult, regardless of color or creed, and see their humanity and our connectedness...and I can authentically love them with all my heart.

I am continuing to learn how to be a better version of me, an ongoing process that will take the remainder of my life, however long that might be.  




Back to real life, exquisite in its complexity and beauty.  Wouldn't change it for anything.  Each hardship endured has forged me, each tear shed has cleansed me, each sorrow has cultivated compassion in me.

Fifty years old.

All is well.

Good Ol' American Interdependence!

Good old Thomas Merton, he certainly "gets it", doesn't he? The theme of interdependence is one that is being regularly ...