Advent: When Will Enough Be Enough? (Luke 11:29-32; Psalm 90; Isaiah 1:24-31)

I woke up this morning wishing for a magic pill of some sort. I do this from time to time when I’m tired of getting out of bed.  When varying degrees of chronic pain and fatigue cloud up a seemingly good morning, I want something that solves it ALL right now, once and for all.  I’ve thought the same thing for some of the stuff Jax goes through.  Why won’t God just make a way to make it right so we can move on with our lives?  

In Luke 11, Jesus seems exasperated while speaking with the crowds, realizing the seeming denseness of the people who surrounded Him.  He fed five thousand “plus” people with a few fish and a little bread (Luke 9:10ff) for goodness’ sake.  He raised a little girl back to life and healed a woman, all while walking down the street. What more do they need to see and hear to believe? 

Jesus taught them how to ask for what they need (Luke 11:1-13) and cast out demons (Luke 11:14ff) right there in front of them.  Not once.  Not just one. But again and again.  And these people, they’d been there, seen it all.  It was a magnificent display of God Being With Them and yet… here they are, once again, asking for yet another sign.  

When will enough be enough?

Jesus uses the story of Jonah to let them know they’ve SEEN what they need to see to believe.  What He wants them to do is realize what they have… God With Them walking the streets, teaching, healing, being present in their daily lives, even if their daily lives aren’t perfect. 

Jonah didn’t have to perform any signs for the People of Nineveh to have a change of heart.  He just had to show up in their city.  And here’s Jesus, someone Greater than Jonah (or anyone!) giving them all sorts of magnificent signs and miracles and still , it wasn’t enough for them to believe He was who He said He was? 

When will enough be enough? 

Funny that this passage popped up on a day I was wishing for #themagicpill.  (Not funny haha, but funny coincidence if I believed in coincidence)  Because it’s not every day I have trouble believing that God Is With Us in the hard and the good.  Most days, He strengthens me to carry out my responsibilities as wife, mother, friend, daughter, sister, pastor in ways I can’t even wrap my head around.  Some days I lay my head on my pillow and am so thankful that God almost literally held me upright, got me through.  And most days, as I ask Him to wrap Himself around my kiddos, that they’ll have peace and joy in their day, not anxiety and stress and frustration.  And many days He does just that, and I marvel that He has blessed them with His Presence even in the ordinary day to day of right now.  And when they are anxious or frustrated, God shows up in the middle of it all, and helps me and them navigate through. 

When will enough be enough? 

No, so far, in spite of desperate prayers, God hasn’t provided the magic pill to solve all our problems.  But He does show up, God With Us, in each and every moment, even when our lives feel desperate, maybe like that young couple walking around Bethlehem, seeking a place to rest and give birth.  

God showed up in this world as a baby when He didn’t have to.  But what a sign to us that God (INDEED!) wanted to be with us in our day to day.  What a way for God to show us that He’s Here, and He’s with us even when there’s tough things, even in the waiting and wondering, even when we’re tired of getting out of bed. 

We don’t need another sign.  We have a God Who Is With Us. 

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Intro to #theEggshellLife, and #FASD

I sit here, and watch Jax run up the steps to go down the waterslide for the 99th (or so!) time in the last hour and my heart fairly bursts.  I watch him, my weary self, and wonder for the 199th time “where does he get his energy from?”  And then I’m thankful he’s smiling and giggling and screaming with life, and I enjoy this, what appears to be a typical family sharing a fun evening together, away from the every day of life.  I remember, this boy ~ and his big sister ~ is the joy of my heart, the reason I get up in the morning, and the long answer to our prayers to be parents.

And I also remember that this boy, just a couple hours before, completely melted down as we pulled into the hotel parking lot.  He didn’t like the “look” of the hotel. “The doors are on the outside Momma!” he screamed from the back seat, with big alligator tears rolling down his face.  I looked over at his Dad and sister and their downcast looks said it all.  “Not again” their eyes said.  We’ve been here before, many, many times, because with our son, we’ve been living what we’ve come to call “The Eggshell Life” since the day he joined our family as an infant.  Being with him and caring for him can parallel walking around on eggshells, watching what we say, how we say it, how we plan and live every day, because anything might set him off.

This boy ~ our Jax ~ has an #FASD, or Fetal Alcohol Spectrum Disorder.  This diagnosis wasn’t completely unexpected when he came to our family, yet it challenges our capacity as parents and a family every day. Jax has challenges in behaviors and relationships and learning that have forced us to make some hard choices about priorities for our family. His diagnosis has been heartbreaking as it would be for any parent who sees their child struggling with health issues.   The needs for his future are overwhelming if we think about the possibilities too much.

That afternoon, we sat together in the van, mini-holiday on hold, as Jax continued to refuse to consider that this hotel is where we were staying.  As my 10 year old son screamed and cried in the van, I did what I’ve learned to do after years of similar experiences.  I tried to calm my shaking heart and steady my voice, wondering like I have a hundred times before whether we made the right decision to leave home for this short family outing.   In the end, with time followed by a calmer conversation, Jax decided it was okay to at least “go check things out”.  Once he saw the big atrium with the pool and waterslide, and that he could see the waterslide from our room, he was ready to be there, meltdown forgotten, full speed ahead.  Not so much for his parents and sister, who were still shaken by it all, but then, that’s the “eggshell life” we live.

FASD is a spectrum of disabilities mostly hidden from the eyes of those not looking for it, and caused by a pregnant mother consuming alcohol sometime before the birth of her child.  Current research  shows maternal drinking is one of the leading preventable causes of birth defects and developmental disabilities in the western world.  There are no confirmed statistics of how many children are affected by an FASD, however, there are some places where it is documented as high as 5 out of every 100 births.  Other places, including among those that I work with in our local Fetal Alcohol Network, say they think it could be as high as 1 out of every 10 persons.  I share these stats because, in the world of adoption, where we don’t have complete control over what happens to the children who join our families before they are in our care, we may have to face the decision to open our lives up to the possibility that an FASD could affect our families.

But statistics aside, I also write this to reach out as a mom and advocate to say, if you are facing this hard choice and the challenges of the “eggshell life”, you are not alone.  FASD has become a very real consideration in many adoption experiences.  Many of us may be parenting a beautiful son or daughter who like mine, can be both maddening and miraculous, creative and charming, but also calculating and compulsive and constantly confusing, who is both explosive and engaging.  Your child, like mine, probably snuggles up for love one minute craving love and touch, then fights your help when they’re in crisis and they need the love and touch the most.

This may not be the life we expected, or planned for, but it is the family we have.  We absolutely adore Jax and all his quirky, unique and high spirited ways.  He is Jax.  He is who he is. We are fierce about advocating for him, and for our whole family’s needs.  But when we tell our story and talk about the hard parts, we always make sure people understand that we made a conscious and informed decision as a family in the adoption process to consider increased health risks in many areas, including potential prenatal exposure to substances.  It wasn’t an easy decision, but it felt like the right one for us.  Every family must make their own decision and understand what risks they are willing to consider.  But for us this is our life, and we’re grateful for it, and we’re doing the best we can, even while walking on eggshells.

Sometimes All I Know To Do is…

hug him and cry.  I don’t write much about the meltdowns we experience as a family, mostly because somedays it would be all meltdowns, all the time if I did.  Even now, the supper dishes are still on the table now over an hour after our yummy steak dinner was enjoyed.  Jax got to the point of meltdown after supper, and in the middle of trying to play with his sister, and when push came to shove (most literally), Jax melted down.  

This isn’t just a crying without cause kind of thing, although there are times it feels so much like that.  It’s an air sucking, can’t talk or breathe, sweating, screaming, so very sad moment that can go on forever, or sometimes feel like it.  I wish I could say that it wasn’t my fault but I live constantly wondering what I should have done to help him stay “just right” so that the “yuckies and itchies” ~ that’s what he describes when he is able to describe how he feels ~ don’t take over and Jax can’t control his anger.  Should I have done more work than the walks and the playgrounds and the boxing and the trampoline and the…the…the… 

What else could I have done?  We do a strict schedule most afternoons  where, if he gets any type of video at all (that is VERY rare these days), it is early and we always have energy-expensing, then calming experiences planned for him.  And the routine is strict. And so are the rules.  And still, there are meltdowns and sometimes…

sometimes all I know to do is experience the melt, and then hug him when it’s over. And cry all the while. 

And tonight he snuggled in and we both cried, me with grief and longing for him to ever have more than a fleeting moment of peace, and him, I hope just feeling the comfort of the arms of a Momma who loves him so very much.  

I cry for alot of reasons.  Because I’m frustrated. And scared.  And at a loss to know what to do.  And wondering if I am doing enough.  And feeling like if I do any more, if I take even less time to care for me and others while focusing on his needs, I will just waste away.  I cry because I love him and want him to feel joy, not this perpetual frustration.  I cry because I grieve “what might have been” if alcohol and drugs would have never entered his little body those first nine months of life, and then I feel sad all over again because I truly do love my son just the way he is.  

I cry because I’m lonely in all of this. 

My Jax is a handful and it really feels like no one really, truly understands or gets it. But then, how could they?  They don’t live with him.  They don’t see him through mother eyes who can truly say to her son and mean it, “there is nothing my dear, sweet boy, that you could ever do that would make you lose my love”.  

Sometimes all I know to do is cry, and then… try… try again tomorrow, and hope and pray that we get it right, and that sometime along the way, ever so gently and miraculously, a new connection will makes it way in and through his brain to help him see what it feels like to be at peace even when life is overwhelming. 

Because that is truly what it feels like to him because of his sensory differences, because of what alcohol did to his brain.  What we see as every day life, he sees as a cloud that frustrates and confuses, and fills his mind and body with all sorts of stimulation he can’t sort out.  And it makes him melt down, and the tears flow and words are angry and body is out of control and during that moment, I miss my sweet boy but still… love him just the same, and look forward to the moment when the meltdown is over and he is my sweet boy again. 

And I can hug him close, and we can cry, because sometimes that is all we know to do.

My Son Has A Hidden Disability, and the Work of Giving Up Denying It

I decided I would just come write out and say it.  I have spoken about the possibility but not much, and not for a really long time.  My Sweet Jax has an initial diagnosis of Fetal Alcohol Spectrum Disorder  To say it’s been hard actually getting to the point where I can say that out loud, much less for medical professionals to say it to us, well, that is an understatement.  And a long journey getting to this point where we have to face this new reality as a family.  

Hearing this initial diagnoisis in late December of last year really hit hard.  It’s not completely unexpected, but you know, you always hope that there will be some “lesser than” or “more treatable” condition that might come with the effects of prenatal exposure.  But finally, after a couple of years of trying to get the local organization who is supposed to be screeing at-risk children’s attention to no avail, this doctor took us seriously, and well, even though it is hard to hear, it is a relief to know.

The diagnosis process isn’t over yet. In fact, thanks to a very overloaded health system (in Canada it is government run, so a bureaucracy makes the decision about where money is invested in the system) that is especially underfunded in relation to mental health, Jax now sits on a waiting list that is 18 months long.  He is scheduled for evaluations the Summer of 2012, which official evaluation and diagnosis in September 2012.  That is a LONG WAY OFF.  And the FAS clinic here can’t really do much until they have something official to go on.. 

Thankfully, the school system can.  Because of the initial evaluation by DocF, and her concerns for him behaviorally and emotionally, we have been able to get some funding that offered Jax a complete occupational therapy evaluation already, as well as an aide in his preschool classroom for the rest of the year, regular OT (occupational therapy) work in the classroom, as well as home visits to help Hubby and I continue to build on what has become a very scheduled life to keep Jax from having an over abundance of meltdowns and stress.  

The OT evaluation found him to be “different” (as opposed to typical) in every sensory area except his motor or kinetic.  Hopefully with time, I will go into what this all means, but I’ll just say this… knowing that many of Jax’s issues are sensory-related helps make sense of so much of what we thought was just “quirkiness”.  And knowing these things offers us tangible avenues to help him, or at least to give him more grace when he is put in situations that are over-stimulating, that his over-sensitive body and brain can’t handle.  It’s like he gets overheated at times, and just like the radiator of a car, when that happens, he has to blow off some steam.  That is his reality.  That is OUR reality.  

As with most things I share on my blog, I have been in turmoil about whether or not to share this part of our story.  I’ve said, in the past, that the last thing I want is my son labelled as a “drug baby” or something like that.  But I also don’t want anyone to believe for a minute that I am ashamed of who he is because of how he acts sometimes.  That couldn’t be further from the truth.  He is himself, and all that means, and I love him to the core.  But I also won’t lie about things, most especially to myself, anymore.  He is more than “just” a boy, or “just” high spirited.  He is dealing with real issues here, and now, as his Momma, I have to face them too.  Our whole family does.  And this affects the way we live, the choices we make about just about everything.  

A diagnosis is not the end of the world.  It’s the beginning of getting him all that he needs to become the young man he was created to be, and that he is becoming in spite of this struggle.   It doesn’t change my love for my son, or the essence of who he is.  It changes how I see him, and that is a good thing.  No longer struggling against what feels like defiance, but rather embracing my pivotal role in helping him make the re-connections that alcohol or other substances caused before he even took his first breath.  

So once again, it seems I’m injecting another dimension to what I write here.  To say I’m overwhelmed with it all is an understatement.  I feel piled on right now, and wondering how we are going to see our way through.  But as I said, it is not the end of the world. We will see our way through.  

And there will be, I should say IS, so much to be thankful for where Jax’s health is concerned.  Unlike many kids on this spectrum, he sleeps well, and for now, has manageable (although exhausting) meltdowns, and is physically and cognitively on or above par.  Not to mention he’s hilarious alot of the time, and draws the love of those around him without really trying very hard.  And he has what we call his ‘church face’ which means more often than not, he copes much better in public than he does at home.  Even though it wears on his Momma, it still means that at least for now, school and church are enjoyable, once he gets there and wraps his head around the fact he’s there.  So there are so many good things, and we celebrate God’s protection of his wee brain in those areas.  And trust God to give us wisdom and grace through it all.  

And hope… we can’t get far without hope can we?

Jax Sleeps

Yes… it is true. My Little Man is asleep. It would be just plain trivial, if it weren’t so amazing at least to me. He is a baby after all. Babies sleep. Lots. And so does Si. But the amazing thing tonite, the milestone (Oh Lord…pray it is so…) is that for the first time since I met my little son, he fell asleep in my arms without lots of tremors and jerks or “twitchies” as Hubby and I affectionately (or not so much…) call them.

You see, there is a whole part of Si’s story that I haven’t told yet. For a multitude of reasons. Partly because I don’t want my son labelled. Partly because I don’t want the incredibly honorable woman who gave him life to be judged. Partly because well, to this point, I thought it wasn’t really my story to tell.

But tonight, at least at this hour, I want to share because I hope beyond hope that him falling asleep, twitch-free, is a beginning. Of what? Of his healing, of getting his life back, of fully recovering from the effects of things done to him during his first nine months of life.

When I first held Jax, I saw his beautiful face through my tears of relief that he was here and alive. Then I saw the heart monitor wires. Of course, my mother heart skipped a beat but I knew then. I knew that there was more to the story. We had been told that his First Mother has experienced a struggle with addictions. We had been told that she was in recovery, had one small relapse in the time she was pregnant. We aren’t naive, but we are trusting… we believed her.

We found out as the time in the hospital progressed that our sweet Jax had already experienced a whole lot more that I dare say, Hubby and I put together. And we would have to monitor him for withdrawal symptoms from the cocaine used as soon as a week prior to his birth. My heart could hardly take knowing that he might hurt and struggle against this. But we knew that our commitment was true and sure to this little guy. He was still our son, if his First Mother wanted it to be so.

We were sad but we weren’t giving up. That night, I stayed all night with him because I wanted to see for myself. Symptoms would start 24-48 hours after birth. That night he was restless but okay. He slept more than me. The second night in the hotel, he had about two hours of uncontrolled crying, no way of providing comfort, lots of shaking, painful to see this little guy, not even 2 days old going through this. His third night, after a day to “too much” ~ driving, restaurants, family ~ we spent six hours awake, trying to help him through.

Things have slowly tapered off since then, with short period throughout the day where his sleep is interrupted by tremors and hiccups and crying. We know he’s getting better… we pray he is. And tonight… no tremors and right now, his “hour” is over, when it usually happens. So we are either in for it later (which means I better wrap this up) or he is getting better.

I tell this side of his story mostly because I want it recorded because I believe he will be healed from whatever effects he will suffer long-term to whatever extent God wishes. I believe it… and I want it here so I can see that I believed it, claimed it, right here, tonight.

That third night ~ our “all night” watch with him, Hubby and I prayed the same prayer over him that we prayed over Bug the morning in the hospital when we learned that she too, had been exposed to more drugs and alcohol that we were originally told.

Psalm 139 ~ Lord, you have searched me and known me. You know when I sit down and when I rise up; you discern my thoughts from far away. You search out my path and my lying down, and are acquainted with all my ways. Even before a word is on my tongue, O Lord, you know it completely. You hem me in, behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; it is so high that I cannot attain it.

Where can I go from your spirit? Or where can I flee from your presence? If I ascend to heaven, you are there; if I make my bed in Sheol, you are there. If I take the wings of the morning and settle at the farthest limits of the sea, even there your hand shall lead me, and your right hand shall hold me fast. If I say, ‘Surely the darkness shall cover me, and the light around me become night’, even the darkness is not dark to you; the night is as bright as the day, for darkness is as light to you.

For it was you who formed my inward parts; you knit me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works;that I know very well. My frame was not hidden from you,when I was being made in secret, intricately woven in the depths of the earth. Your eyes beheld my unformed substance.In your book were written all the days that were formed for me, when none of them as yet existed.How weighty to me are your thoughts, O God! How vast is the sum of them! I try to count them—they are more than the sand.

I come to the end—I am still with you. 

All truth… and I must trust, will trust, just as we have with our precious Bug that all is well and he is at work to heal our son, to make him all that he should be.

And this has become even more vivid to me this last week as I struggle to understand why my friend Jules and her precious Jacob suffer so. I have learned more this week from him, little Jacob yet to be born, about perspective and being grateful for the gift of life. He has taught me, at least so far, to know that my sorrow over the uncertainty of Si’s future should be so small, for Si is alive and has a life ahead of him, whatever it might hold. SO tonight, as Si sleeps, I will too, maybe for the first time in three weeks, grateful…