Friday, April 28, 2017


The past week has been one of important-to-us milestones, the ones you mark that others may not find to be of much consequence, but to us they really, really matter.

For one thing, we are now parents of a nineteen year old!  How did that happen?  Seems that just yesterday she was the feisty almost twelve year old we arrived home with, and now, she is a sophomore in high school who is blossoming into womanhood gently and happily.   Still asserting firmly that she does NOT think of herself as nineteen and wants to continue to have time to feel deeply embedded in her family, Angela has learned how to live in the present moment and squeeze out all the joy she can.  What a beautiful soul we all live with!

It must be boring to see our birthday pics every year, they all feature the family favorite chocolate cake with sprinkles!  We are a boring bunch :-)

Our entire family has been on pins and needles for weeks as Matt's last opportunity to test for his final rank advancement with Civil Air Patrol approached.  Five and a half years of very hard work in content areas such as leadership, aeronautics, physical fitness, and character and the final chance to pass and become a Cadet Colonel was at hand.  The Spaatz test, named after a WWII general, is the highest award a cadet can earn in Civil Air Patrol, and it is quite rare for anyone to get that far.  In fact, fewer than 2300 cadets in the 50 year history of CAP have ever attained it...1/2 of 1% of all cadets.  

Sitting in the room as he tested, I kept hearing sighs and thought to myself, "Oh man, it sounds as if he is struggling.", and I saw his hand shake as he lifted it and held it mid air before finally pressing "Enter" to see his results.  The look of relief on his face moments later as the results were shown on screen was unlike any expression I had ever seen on from him before!  He did it!!   

All of us rejoiced with Matt!  
Soon to be 3 diamonds on that uniform!

Perhaps the most significant milestone for all of us came as we joyfully joined our new church, Shepherd of the Valley Lutheran Church in Grand Junction.  This was truly an important moment for our entire family, one that was born of great turmoil, much grief, and a need for rebirth.  Heartache led us to deep listening as we asked God to show us the way to a place where we could all grow in our faith, and feel part of a community that spoke to each of us.  We were astonished when my best friend, Candi, showed up on our doorstep a few days before to surprise us and be present for our special day!  Also in attendance were dear friends, Jane and Steve, whose presence also meant so much to us.  Being loved so deeply by others really matters, and though we left behind many who we also love very much at our old church, we were warmly embraced by our new congregation and we have felt at home since the moment we first walked through the doors.

My heart smiled as I heard Olesya say over lunch afterward that, "I woke up at 6:00 am and couldn't go back to sleep, I was so excited to join the church today!".  Yesterday, we talked about grief and loss, and about the process of claiming others in our lives.  Angela said that Sunday she felt that not only had we joined the church, but that through the warmth and acceptance of others, we had been claimed by our new faith community...a pretty powerful statement to make, and indicative of what we all have felt.  

 Smiles all around :-)
We are home!

 The best friends show up.

 Handsome man in pink, he read the Scriptures this morning for the first time!

 Happiness from ear to ear!

Celebrating milestones...loving friendship.

New chapters in our lives often begin by creeping in, we don't always know it until we look back and can discern with great clarity, "Oh, that was when it all changed."  We are beginning a new chapter in our lives, a new church family, a new graduate soon, a new freshman in high school, and probably many more milestones that are not yet recognized as such.

I love reaching new ones with these special people in our lives, the ones who carry our name and the ones who carry our hearts.

Thursday, April 27, 2017

No One Else's Time Line

She sits on the couch, tears streaming, fingers wound tightly around mine as we get very, very real.  It has been a difficult couple of months, well, difficult is too weak a word to use, but repeating "challenging" over and over again as it pertains to broken brains grows wearisome, and it loses its potency.

The realization has settled in among the entire family that we have another FASD'er among us, a child whose brain was damaged by alcohol use in utero who has very little choice about how she is functioning at the moment.  Independently, every one of her siblings has privately asked the question of me, "Is Olesya ok?" and I have replied, "No, something is really not working right and we all really know what it is, don't we?", only to hear a sad sigh in response, accompanied by a knowing nod.

The only one who didn't really see it for what it really is was Olesya.

Just as it was for Kenny, the 17th year of life has been a killer in many ways.  For Kenny, brain malfunctions were constant, as were total shut downs in a way that are impossible to describe.  In Olesya it has manifested in a further breakdown of logic, as she has said many things over the past several weeks that left us scratching our heads, trying to figure out what in the world she was talking about.  She has started to make statements and then drawn a complete blank and been unable to finish them.  Math skills, which were poor before, are almost non-existent...she couldn't do a simple math problem like 2000 minus 400 without paper and pen, and even then she got the answer incorrect twice.

Worse yet, my sweet daughter who had struggled so much throughout the past 7 years to gain confidence and a sense of self was beginning to regress, and "No, I don't want to try." was becoming a new mantra.  Where a growth mindset had gradually developed, we were now seeing a pulling inward that bothered me far more than any math malfunctions.  Years of work appeared to be suddenly wiped away, and one night I began to do a little math work of my own, and putting two and two together, emotional arithmetic answers were revealed to me, and my gut told me it was time for a serious talk.

Two days after a particularly frustrating shopping trip for a few new blouses for her, during which "No" was resoundingly offered at every possible suggestion made by either Angela or myself, Dominick and I sat down alone with Olesya.  Though we had talked in generalizations with the girls in the past about the likelihood of them being affected by their mom's alcohol use, we had no evidence of it being used while she was pregnant, though definite solid knowledge of use very early in their lives.  Facial features are present for both, more strongly in Olesya, and the sort of "disconnects" we deal with on a daily basis with both of them made it obvious to us that we had more than one FASD child in the family, though not diagnosis-worthy as we already "knew" and they were far more functional than Kenny is.  Angela is the least impacted, but reflects it in frequent memory issues where information is totally lost, even if it has been shared  hundreds of times.  Thankfully, it doesn't happen often.  She too struggles mightily with math, and Algebra is truly beyond her.  She has the occasional disconnected moment, but they are not regularly occurring and her processing speed is rapid.

Olesya, on the other hand, has far fewer memory issues, but the disconnects are a daily occurrence, the immaturity gap (Dysmaturity) is far greater, and critical thinking is hindered on a regular basis.  Her processing speed is far slower, in other words, she has knowledge and can come up with answers, but it is more difficult for her to access the information.  This is often not as noticeable to others because it hides beneath a cloak of introversion, but I know her well enough to tell the difference, and can always see when she is slow to respond because her brain is working harder.

My light bulb moment arrived when I realized that Olesya was hiding from her increase in disabling behavior, she was "stuck" and needed someone to name it, and help her claim it.  I don't care for labels, but I have learned through the years of working with our kids that labels can be incredibly helpful if it offers someone an explanation of "why" things don't work the same for them as others.  I suspected that Olesya was hiding from her "why" right now, and was confused, scared, and lonely in it.

She needed it named clearly, she needed to accept that what we are seeing and experiencing with her is true disability.

We started the conversation, Dominick present but quietly observing and allowing me to lead.  I asked her if she had any thoughts about why the past couple of months had been so hard.  There was a little bristling, a little verbal avoidance but an acknowledgement that things hadn't been going very well.   After a few minutes of dancing around and drawing her out a little, I stated clearly and firmly that I didn't know if she saw it the same way we were seeing it, but that she was experiencing classic signs of an adolescent with FASD, and we wanted her to know we understood she wasn't doing anything in purpose, but that she had a true disability...and I wondered aloud if she realized that.

That was all it took.

Dissolving into tears, we proceeded to be very real, very honest, and very raw.  We talked about the "misfires" she had been having lately, she admitted she had been anxious and nervous because she had discovered on her own that she had left the flame on the stove five different times over the past few weeks, and things weren't making sense in her head at all a lot of the time.  I gently explained that this age was harder for kids like her, and I kept repeating words like "disability", "fetal alcohol", and "handicapped" as I explained that she couldn't fight her brain and none of this was her fault.

"Do you realize you really and truly do have Fetal Alcohol Syndrome?", I asked, catching her off guard.

"No, I really didn't even though we talked about it before.  I wasn't as bad as Kenny, so I didn't think I did.  Now that we are talking and because of the past few weeks, I really do think I do." she said, choking back the disappointment and fear.  Coming to acceptance can be a painful, painful road to we have had to walk far too many times with our children.

Olesya then spoke herself and brought up driving, which we had planned on working on this summer.  She explained she was truly scared of it, wasn't sure she would ever be able to be safe because it took her so long to process information and she realized she needed to be able to respond quickly behind the wheel.  Seeing the dismay in her eyes, knowing she understood full well what this might mean for her future if she indeed really couldn't drive, I wanted more than anything to just make it all go away, to fix all that isn't working right.

How many times through the past 20 years have I wanted to carry all the pain for my beloved ones?

I was so proud of Olesya as she also spoke honestly and forthrightly about how our gingerly approached conversations about future thinking and possible career training were scaring her, and she admitted she doesn't feel at all ready to think that way, that she felt more like 13 or 14, not at all like a 17 year old who really should be wanting to think about her future.  "It scares me, mom, and I don't even know what I like, or what I can do, or if I can ever even support myself if my brain is like this."

Reality is hard to contradict.

Dominick and I have talked for awhile about our concerns for Olesya.  While we have no worries about her being a productive employee who works full time, does she have the capacity to work at a job that allows her to earn anything beyond minimum wage?  She has MANY gifts and talents, particularly when it comes to organizing, and she is bright and intelligent.  People don't always get that FASD isn't always IQ, it is the brain's inability to access or use that IQ in a fully functional way.  Her introversion is a big one for her to overcome, and her stuttering is growing a bit worse.  She seems to have poor tongue muscle control and often chokes on her own saliva randomly, which she spoke about in detail as it embarrasses her.  When she is nervous, she stutters a lot and struggles to get thoughts in order, causing her to slip to the background so it isn't noticed.

At this point, we asked Kenny and Angela to join us in conversation, both of whom had been asked prior if they would mind taking part in this particular discussion.  These three beautiful human beings have overcome so much, and have to work so hard every single day just to achieve what comes easily to others.  Kenny actually asked if he could be helpful in talking with Olesya, and he offered to explain how hard it was for him to accept his limitations and begin to start working with me as a team to move forward in his life versus denying it and hiding from it.  The talk I had with him prior to speaking with Olesya was an important one, and helped me focus on the things that might be most helpful.

There we sat, in the afternoon glow, having a conversation no parent should have to have with their 17 and 18 year old kids.  We reinforced that no one had to "grow up" at any pace other than that which was appropriate for each individual, and that FASD often means kids need far longer to mature and gain skills to move out into the world (often not until their late twenties).  We reiterated that not a single child was a "burden" to us, but instead never failed to delight us, to inspire us, and to instill in us a passion for helping them that would never, ever dissipate.  We claimed this home as theirs forever, just as it is for Josh and Matt should it need to be, but reminded them that in time, they would gain more confidence and they would know when (or in some cases, "if") it was time to move on in life.

There was so much love expressed in that moment, from parents to children, from siblings to siblings.  What could have felt hopeless was instead quite the opposite, it was an afternoon filled with authentic concern, safe exposure of fears, and a recognition that no one was alone in this.  Sweetly, each of the three expressed deep worry for me as their main caretaker, as they shared their gratitude for all I do to advocate for them, and for the work I do with them to help them understand and be understood.  It was the perfect opportunity for me to express my own gratitude for them, for how they accept correction from me, for how they work harder than anyone I know to overcome so much, and how we are a team...always, always a team

The truth is, as I explained, none of us caused this, it is not the fault of a single one of us, so we need to never fight against one another and view ourselves as a strong unit who will work against what outside forces caused.  All nodded in agreement.  I also shared how both Matt and Josh are concerned and had shared a lot with me recently about their siblings, and provided me with great insights as well...and that they, too, are on their own journey that at times has been quite difficult, so they "get it" too, even if this particular issue isn't one they struggle with.

We parted after an emotionally exhausting two and a half hours, with no secrets, new understandings, and a lot of fear aired.  Over the next several days, it became immediately apparent that the conversation and been a cathartic experience for Olesya, and her entire demeanor changed.  I asked her a few days later how she was feeling about our conversation, noting that she appeared to be lighter hearted and more herself.  With a smile she said that it had indeed helped, and she felt safer and more secure now, and that she realized she really did have a lot working against her but knew she had plenty of time to grow up and we would all figure things out together.

And that's really the point, isn't it?  That none of us are really alone unless we choose to be, and in our self-imposed isolation our problems are amplified by our inner voices.  Naming something, sharing it, unburdening ourselves of the fears, both real and imagined, is healing and draws us closer to those whose support can breath new life into our lives.

For now, we will take it one day at a time with each and every one of our burgeoning adults.  Some will need us longer than others, all will be there for one another.  We are on no one else's time line but our own.

Saturday, April 15, 2017

A Year of Lent

Tomorrow is Easter and words wrap round that holiday that take on great significance for people of the Christian faith, language that speaks of redemption, resurrection, and rebirth abounds as we walk the 40 day Lenten journey through Maundy Thursday, Good Friday, Holy Saturday, and Easter Sunday.

For our family, this entire past year has felt a bit like the season of Lent.  Leaving a church is devastating, and the gradual awareness that came upon all seven of us was not one we wished for, and in fact was a dawning we had been pushing away for considerably longer.  Our church had been our home in every way for so long, and sometimes it isn't "them" that needs to change, it is "you".

Painful...heartbreaking...aching...doubting...acceptance...surrender...all are words I would use to describe this past year for us.

And yet, Easter always arrives for believers.  For some it is the actual resurrection, for some it is a metaphorical one, but either way, new life is always just around the corner waiting for you to grasp it.

Tomorrow morning, for the first Easter Sunday in 15 years, we will be attending services elsewhere.  As promised to the faithful, God has not wandered away, leaving us broken and alone, but instead has led us to a new land, a new life, a new beginning.

How blessed we are!  How happy we are!  How at home we are!

This "Year of Lent" has been incredibly important for our family.  I was initially fearful that this process would find us distanced from God as we struggled through the unknowns, but instead, it has drawn all of us far closer, and helped us clarify what really and truly matters to us all.  Though the kids all went through a confirmation process last year, it was interesting to see how this experience was their true "Confirmation".  At a critical time in their lives, when many their age walk away from church attendance, they were given full say in what our family's faith future looked like.  You see, they had to choose to remain church goers, they had to think deeply about what aspects of worship and community worked for them, and had to discern where their personal lines were drawn for their theology. 

It was them claiming their faith in an entirely new, and more mature way.

We started moving in one direction, and ended up in an entirely different direction.  We are so thankful for our healing time at the first church we attended, a Disciples of Christ congregation that welcomed us, invited us in, and gave us a place to rest when it was most needed as we came to final conclusions.  They are a lovely strong group and we enjoyed getting to know them.   Ultimately though, it was not to be our church home, as we slowly began to understand more of what we needed and dreamed of.

One bright Sunday morning after the new year, we walked through the door of an ELCA Lutheran church in Grand Junction, an hour away from home.  It was only our second church to visit, and yet something happened there that very first day...Angela looked at me in the car and immediately said, "We found it Mom, didn't we?  This is it." and everyone echoed the sentiment that we all were almost too scared to admit...could we have actually found our place so smoothly?

Yes, we did.   Not out of desperation, but out of Spirit leading.  Every week, we were hit with another 2 x 4 that made it obvious beyond all doubt that we were indeed in the right place, that we had found a place where all seven of us would feel met, challenged, and nurtured in our faith.  

We have attended every Sunday since, and are slowly making new friendships and becoming invested in a new congregation.  The hard part, for me, and I think for many, is that your "story" is not known.  When you have traveled through life for a considerable period of time with others, there is little they don't know, and things don't have to be explained.  Starting over for an introvert like me means learning the stories of others, but more painfully, having to share our story, too.  Ours is a complicated tale, not easily summarized...but then, no one's is, really, is it?

Singing from a new hymnal in a different pew tomorrow as we celebrate the Christian message of new life, I will surely have fond remembrances of Easters past, and perhaps shed a tear or two as I recall those I love who are no longer worshiping by my side.  

A new song is being written, however, in our attendance tomorrow, in the peace we pass, and in the prayers we offer.  This song is the next in our personal faith hymnal, one that doesn't shed the old favorite songs, but instead adds new pages to the collection.  I will turn to new faces with gratitude for the acceptance and warmth we have received, I will turn to the Spirit as I give thanks for new life over and over again, and I will turn to my family and honor the choices we have made that have been as faithful as they could be.

Our "Year of Lent" has thankfully ended, and next Sunday, when we make it official and are received in membership with this congregation, we being a new adventure in Christ and wander no more.