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.

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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.