Life Goes On

And slowly, but irrefutably…

life goes on.

Seasons change,

new little faces come and go through our revolving door,

and we slowly let out the breath we didn’t know we were holding.

Somehow we start doing normal things again and try not to crumble under the weight of them.

Though it’s behind us, mostly, and we’re moving on…

we’ll never quite be the same.

I turn this over and over in my hands and try to figure out how it works.  This holding on and letting go and moving on and embracing it all.

The world feels bigger and I feel smaller.

My heart races more quickly and doubts crowd in overwhelmingly.

I feel like I’ve lost something.

Confidence.

That’s what it is.

I second guess my every move and the instincts I once relied on dance in and out of the shadows, evading my grasp.

One day at a time we try to rebuild what’s collapsed around us.

I say yes, and pray for strength to be able to love another little soul placed in my arms for a week, a few days, or until further notice.

Those little faces that walk through my door start to piece my soul back together.

I remember I am not alone in this broken world.

There are so many others.

I plan and dream and set aside the what if’s that want to destroy it.

I leave my son in capable arms and enjoy the time away with my husband, realizing my shoulders relax from their alert stance.

I find time for His Word to soak into my heart again and I start a Bible Study with a friend, grasping to understand brokenness and hurt and being stuck.

We go back to the hospital.

We come home.

We go back again and there are two more small surgeries.

We come home.

I file the hospital discharge papers and organize my son’s medical records into something recognizable; putting the sheets of paper carefully in chronological order.

My daughter starts a story; propelled by my own love of putting life into words.  She calls it “My Family.”  It is equal parts adoption, foster care and her little brother’s medical journey.  I know she is processing and healing and I look forward to each new addition she chronicles.

 

I start doing other things again.

Parent teacher interviews.

Dinner with friends.

Sleepovers with our god daughter who we have missed so much.

Writing.

I call our social worker and smile down at the envelope of paper work she gives me.  It smells like a brand new notebook and looks like hope in my hands.

We decorate the house for Christmas and celebrate National Adoption Month.

Slowly but surely, the beautiful Truth sets in.

We’re ok.

We’re all ok.

My son has a new sparkle in his eyes, and despite some scars he is beautifully, wonderfully whole.

My daughters keep stepping forward and I see a new confidence and grace in their stride.  I savor the trust and security I see glowing in their eyes.  I had feared so much would be lost but instead I am reassured.  I had no idea they could be so brave and strong.

The little, normal moments of life fill up my heart.

And suddenly I see we’ve come full circle.

Steadfast love has been there all along.

 

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10 Things You Should Know About FASD

Fetal Alcohol Spectrum Disorder (FASD).

Fetal Alcohol Syndrome (FAS).

Alcohol Related Neurological Disorders (ARND).

Alcohol Related Birth Defects (ARBD).

It’s growing,

spreading,

taking over our society.

An invisible epidemic;

Incurable.

Brain damage.

100 % preventable.

The emotions I feel as I write those words are deep.

Anger.

Pain.

Vulnerability.

Exhaustion.

As the parent of children with Fetal Alcohol Spectrum Disorder this is an issue that has affected me very personally and to be perfectly honest I am just in the very beginning stages of understanding and accepting the realities.

For those of you who may have never heard of Fetal Alcohol Spectrum Disorders (FASD) or are unfamiliar with the definition, here’s a brief explanation:

When a woman drinks alcohol while carrying an unborn child inside her womb, that child’s body and brain are exposed to a very damaging substance.

Alcohol is one of the most dangerous teratogens (substances that can be harmful to a developing fetus.)

Alcohol, unlike other food or drink consumed by a pregnant woman, passes directly from the mother’s blood stream through the placenta to the baby.

Alcohol in the bloodstream constricts the ability of the growing fetus to access oxygen and nutrients.  Therefore a baby exposed to alcohol prenatally will not be getting the oxygen and nutrients needed to continue developing at a healthy rate. 

This is made even worse if coupled with the carbon monoxide a fetus receives from cigarette smoke.  The baby does not have the ability to break down alcohol the way an adult can, so the blood alcohol levels will stay higher for a longer period of time than that of the mother’s.

This means the baby is being exposed to even greater amounts of alcohol for an even longer period of time than the mother. 

Alcohol causes cell death and sets in motion a wide variety of disruptions all over the body.  The most common affects are seen in the brain and nervous system.  Alcohol exposure can also leave behind toxic byproducts on the brain which linger and continue to cause damage.

A child who has been exposed to alcohol prenatally and demonstrates a significant number of effects physically or neurologically is diagnosed with Fetal Alcohol Spectrum Disorder.  This is an umbrella term that includes Fetal Alcohol Syndrome and Alcohol Related Neurological Disorders.  For the sake of clarity in this post I’ll just be using the term FASD when talking about any alcohol related disorder.

That, in a nutshell, is a description of the invisible epidemic that so many families and individuals are struggling with in our society.  Many of these families and individuals are found within adoption and foster care as alcohol use during pregnancy is so often coupled with alcoholism and drug use postpartum which leads to abuse and neglect.  Unfortunately trauma affects the brain in many of the same ways as alcohol and compounds the effects, giving the child a “double whammy.”

This is a huge topic and one I can’t even begin to cover in one post, but I’ve made a list of 10 things you should know about Fetal Alcohol Spectrum Disorder.  Please take the time to read this.  So many families are trudging through the trenches of raising a child with FASD and feeling so desperately alone.  It’s hard, it’s exhausting and it’s constant.  You can help by being aware of the realities and facts so you can be there to support them.

1) FASD is an invisible disability.  By this I mean much of the time you will not be able to see any distinguishing physical signs.  Some children will display a slight indication in facial features that most people would not be able to recognize but many have no physical indications at all.  Most of these kids look like regular kids with a little extra energy and discipline needed.  This, by far, is the most difficult part of having FASD or parenting a child with FASD.  Everyone around you will struggle to believe that your child truly has a neurological disorder that limits their abilities…and so will you!  A person with an FASD will most likely be incorrectly labelled and judged almost every day of their lives by those around them.  A parent will experience much frustration due to others not understanding their child’s very real disability simply because until you are intricately a part of that child’s world he or she will just appear to be a regular kid.  This is devastating to the person with FASD, however, because as much as we’d like to ignore their limitations, they are very real!  You can only function so long in an environment that does not meet your basic needs.  School, home and the workplace will all become places of failure if your disability is not understood and accommodated for.  Unfortunately most families living with the reality of FASD will still have some people in their lives who take the stance, “I can’t see it, so I won’t believe it exists.”

2) NO Amount of Alcohol is safe during pregnancy!  I cannot even begin to emphasize this enough!  Unfortunately there are still doctors who are uneducated regarding FASD and will tell you that small amounts of alcohol are not harmful to your baby.  They are wrong!  There is no proven ‘safe’ amount of alcohol.  This does not mean that every child exposed to a drop of alcohol will be affected by FASD, but it does mean that every child exposed to even a drop of alcohol is at risk for FASD.  The effect the alcohol has on the developing fetus depends on many things including timing of consumption, amount of alcohol consumed, development of the fetus and the genetics of both mother and baby.  Fraternal twins can be exposed to the exact same amount of alcohol at exactly the same time and still be affected differently because of their genetic makeup.  This makes it impossible for anyone to tell you a safe amount of alcohol for you and your unborn child.  No amount is safe!  This disability is 100% preventable!   

3) FASD is an incurable disability.  There is no “fix” for FASD.  Alcohol is physical damage done to the brain and nervous systems.  While the brain can learn new ways to compensate, the actual damage done will remain the same.  There will be connections missing for the entirety of the individual’s life.  There are medications that may help some children and adults dealing with FASD, mostly to manage the ADHD-like symptoms.  There is not, however, a magic pill for FASD.  There is no one medication that is going to target all the areas of weakness in a person with FASD.

4) FASD causes impairments in children.  Some of those impairments include mental retardation, learning disabilities, attention deficits, hyperactivity, problems with impulse control, language, memory and social skills.  These impairments make it very difficult for children to thrive in environments such as school.  A typical FASD child will probably: have trouble focusing on tasks, require sensory aids, need constant supervision, have trouble making and keeping friends, have a poor concept of time, find it hard to transition between activities, struggle with anxiety, have poor coordination and balance, find it difficult to work toward a goal, will not learn from their mistakes, have poor judgment, be jittery and hyperactive and display extreme mood swings.  Typical behavior also includes habitual lying, stealing and aggressive behavior towards others.  All these behaviors are rooted in neurological damage and need to be handled as such.      

5) FASD affects the way a child learns; it does not mean they cannot learn!  As soon as people realize that alcohol exposure does, in fact, result in physical, irreversible damage to the brain…their first thoughts are that therefore that child cannot learn.  This leaves a pretty bleak picture!  Children born with FASD’s can go on to be happy, healthy, successful adults…sometimes.  The goal is to reach their potential by discovering new ways for them to learn.  This takes a lot of hard work on the part of parents, teachers and the children themselves!  The world is not geared for FASD, and therefore they are at an acute disadvantage.  But don’t give up!  These children are smart, talented, funny, and social individuals!  Many of them will go on to do very well when given the right tools to accommodate their learning style.  They can become responsible, independent adults…but this isn’t always possible.  Every child is a unique case when it comes to FASD and so there is really no way to predict what the outcome will be.  Depending on the areas of the brain damaged by the alcohol exposure or to what degree, FASD individuals may need structure and supports to navigate their days for their entire lives.  Thankfully FASD is starting to become more recognized and therefore more and more resources and supports are available for families, children and adults affected by this disability.

6) FASD is a spectrum disorder.  This means that, just like Autism, children affected by alcohol exposure in the womb will present with symptoms all over the spectrum.  Every child is a unique case.  FASD has a wide variety of faces, making it even more difficult to assess.  A child may be very severely affected and present with many symptoms or a child may be only slightly affected and therefore portray only a few of the symptoms.  However, this does not mean the symptom displayed is any less severe or that somehow it can be “fixed” since the child does not seem to be severely affected!  Remember, this is physical damage done to the child’s brain!  Most children with FASD will display a similar set of symptoms varying in severity.

7) Children with FASD find it very hard to control their emotions and behaviour.  I know I mentioned this earlier, but I feel these two symptoms are worth going over again since they are so disruptive to daily living.  Many individuals with FASD would be able to do quite well in life if it weren’t for their lack of ability to control their emotions and behaviour.  Coupled with difficulty understanding consequences and poor judgment, this is a major obstacle!  Most children with FASD need constant supervision to ensure the physical safety of themselves and those around them.  They are often described as unpredictable, reactive or as one of my daughter’s teachers said, “She’s an opportunist!” 🙂  Unlike most children, these are not traits they will grow out of as they get older, though they may be less noticeable.  Structured environments, repetition and self regulation tools can help them learn to moderate their behaviors and set them up to succeed, but on their own they do not have the cognitive ability to accomplish this.

8) Children with FASD have strengths too!  Despite the challenges of FASD, many of these children are incredibly lovable, gifted and resilient.  They tend to be very social little people.  Though they may struggle with social boundaries they can often win over strangers with their affectionate, chatty nature.  Even though they can have quite drastic mood swings, they can quickly get over being hurt or angry.  One minute they will hate you, but the next they will love you.  My favourite is, “Mommy, I love you more than the sun!”  Besides being very social these children often have strong visual memories, rich fantasy lives, are very creative and have a strong sense of fairness.  They’re energetic and can handle lots of physical activity, making them active, fun kids to interact with!

9) Children and youth struggling with the realities of FASD are vulnerable.  Many, many of these children and youths will end up in trouble and charged with criminal offenses due to their lack of self-regulation skills and their tendency toward aggression and violence.  Without the ability to control their emotions and responses, they are extremely vulnerable in a society that doesn’t understand or accommodate their needs.  A high number of youths in our criminal justice system have FASD.  Unless they are backed up by professionals or advocating parents to explain their behaviors and beg allowances and accommodations they will be treated as any other person in our justice system.  Even though developmentally they are still a child, they will be treated as adults.  Even as children, FASD individuals are vulnerable.  Children with FASD often have poor social skills and need the protection of adults around them to keep them safe.  They have a very poor sense of judgment when it comes to other people and easily trust anyone who is nice towards them.  They will appear comfortable around even a total stranger if given positive attention.  They also love physical interaction and will seek it out of anyone who is willing to give it.  This makes it hard as a parent to keep children with FASD safe.  An important part of parenting a child with FASD is putting into place appropriate social boundaries.  This can be hard when the child continually receives positive attention from other well meaning adults when he or she crosses those social boundaries.  When children deal with attachment difficulties on top of FASD it emphasizes this and makes it even more complicated.           

10) Education is the key!  The answer to helping the many children and young adults with FASD is found in being aware of the realities and then advocating toward better environments for these individuals to not only cope but to thrive!  By building on strengths and creating a safety net around them, children and adults with FASD can lead happy and successful lives surrounded by people that love and care for them.  They are valuable, beautiful people who deserve the best we can offer them.  As one person put it, FASD is not one of the “designer labels” like autism that people have accepted and provided support for.  With such a direct, negative source it is not a fun disability to talk about, much less explain to children or adults.  It does, however, have just as severe ramifications and being quiet about it never helps.  FASD individuals deserve the dignity and respect we give any other person with a disability and they desperately need those around them to be understanding and supportive even when it gets ugly.  They are not, after all, at fault for their disability.

My prayer as a mother of children struggling with Fetal Alcohol Spectrum Disorder is that they will not only survive but that I will create an environment where they can thrive!

Every single day I want to make the choice to see the beauty of who they are despite their difficulties.  I am humbled to serve a God who can work with even the most broken of vessels and turn it into something intricate, unique and glorious!  Nothing can surprise Him, or travel beyond His ability to transform and remold.  After all, when it all fell apart He was already there.

“For you formed my inward parts; you knitted me together in my mother’s womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it 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 saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there were none of them.  How precious to me are your thoughts, O God!  How vast is the sum of them!  If I would count them they are more than the sand.  I awake, and I am still with you.”

Psalm 139:13-18 

I pray that God will give me the grace and courage to advocate for, offer grace toward and protect these beautiful souls he’s created in His image.

There is so much more good than bad…if only I choose to see.

“I’ll love you forever, I’ll like you for always.”

AF

 

 

 

 

 

 

 

 

Yes, it’s true…I’m pregnant! :)

First, there were 2.

Then, we became 4.

Now…we are anticipating number 5!

Yes, it is true!  I am pregnant! 🙂

My daughters, my husband and I are all over the moon with excitement about this next step of our lives.  It is still a little hard to believe in the midst of the craziness we live, but Little One is growing and I am becoming more and more aware of a new presence in my body every day!  My daughters regularly scrutinize me to see just exactly how fat I have become and my clothes are starting to make some real complaints at being stretched and pulled.

I smiled when I met a woman in the grocery store and she said,

“Oh, isn’t that something!  You know, it happens so many times!  After someone adopts they end up pregnant!”

I grinned at her surprised expression when I said,

“Well, this one was actually part of the plan.”

Yes, we may be crazy.

But we are all very happy and confident that this new little person is entering the drama at just the right time, all in the hands of our Creator.

I feel a little guilty some days.

I have two beautiful daughters, and now I am pregnant with a third child.  I know there are so many women who enter the world of foster care and adoption because they’ve been unable to bear children from their womb for one reason or another.  I know there are hundreds of women who long to be able to carry a child.

I don’t know what to say.

But I do know this.

This life inside of me is valuable and precious, and I will choose to celebrate it with as little guilt and as much confidence as possible.

I am so excited to meet this child, just as I was so excited to meet my daughters last Spring.  They can’t wait to be big sisters, and I am so thrilled they are here to enjoy this journey with us!  Just as I was in awe at the arrival of my two beautiful girls in our lives, I am in awe that once again…even after all the mistakes I’ve made…God has chosen to place a child in my care.

My favourite passage of scripture these days is found in Psalm 139.

I found this passage shortly before I realized I was pregnant, while putting together lifebooks for my daughters.  I wanted to start their stories with the message that even though I wasn’t a part of their beginning, God was.  He was always there, and their presence here with me is not a mistake.  When I found these words in Psalm 139 I was filled with both awe and incredible joy.  It felt like such a gift to be able to etch these words into the beginning of their stories when there is so much I cannot tell them with confidence.

We are blessed to have pictures of their birth parents…even a picture of their Mommy a few weeks before giving birth, her belly swollen and a smile on her face.

Beautiful.

Yet her presence in my daughters’ lives is mixed with so much uncertainty, pain and even anger at times.  I have longed to be able to tell them without a shadow of a doubt that their birth mother loved and cherished them from the beginning; that she made choices for them out of a deep love and selflessness inside of her; that she dreamed of a bright future for them.  It would make the story so much simpler to be able to tie it up in a neat bow of heroism and sacrifice all for the good of them.  But their stories are not quite that simple, and there are a lot of questions without easy answers.  They know much uncertainty and rejection for their young age, and all I can do is to give them honest, age appropriate answers to their many questions…and to say the words “I am so sorry.”  It is not my story to twist, paint in bright colours or finish with a flourish.

So imagine the gift of these words.

YOU MADE

ALL THE Delicate INNER PARTS OF MY

BODY & KNIT ME TOGETHER

IN MY MOTHER’S WOMB.

THANK YOU FOR MAKING ME

SO WONDERFULLY COMPLEX!

I PRAISE YOU, GOD!

YOUR WORKMANSHIP IS

MARVELOUS!

HOW WELL I KNOW IT.

YOU WATCHED ME AS

I WAS BEING FORMED IN UTTER SECLUSION;

As I was woven together in the dark of the womb.

YOU SAW ME BEFORE I WAS BORN.

ALL THE DAYS YOU HAD PLANNED FOR ME WERE

WRITTEN IN YOUR BOOK

before

EVEN ONE OF THEM CAME TO BE.

Psalm 139: 13-16

A few weeks later when I found out I was carrying one of these tiny miracles within my own womb, I went back and smiled as I read these verses again.  All my children’s names will be written in my Bible beside this verse.  No matter who their birth parents may be, what truths their stories may hold or what devastation life may bring…I know this to be life-giving, sustaining TRUTH.

He has seen us long before we were ever born.

We are HIS intricate creation.

Our existence is not a mistake, and before our first breath He could see each day of our lives stretched before Him like the seashore.

We are loved.

We are wanted.

We are in his capable hands.

And that is enough for this Mama to cling to.  If I accomplish nothing else I hope to give this knowledge as a gift, buried deep in the hearts of each of my children.

AF