May 10th

I wake before dawn, my son’s cries prompting me to stumble out of bed and down the stairs to where he cries in the darkened kitchen.  He’s looking for his Daddy but it’s too early so I scoop him up and carry him close to my heart back up the stairs.

I wipe his tears and his nose, get him a drink, and then tuck him back into bed next to his love bunny.

“Goodnight, Babe.  I’ll see you in the morning.  Mommy loves you.”

Back in bed I climb between the cool sheets, but now I’m awake and the birds are chirping and it’s May 10th.

May 10th.

A year ago today my 18 month old son fell off the back of a pickup truck.

My husband and I did all the things you do.  We watched for drowsiness, nausea, vomiting, disorientation, swelling on the skull, lack of balance.

He seemed fine.

It was evening so we kept him up an extra hour or two and woke him every two hours through the night.  Each time he responded appropriately and by morning we were less concerned.

He had a doctor’s appointment scheduled for the following day–his 18 month check up and immunizations.  I took him in, deciding I would mention the fall he’d had last evening to the doctor just to  be on the safe side.  I could feel a bit of swelling over his left ear, and he reacted to some slight pressure, but otherwise was his normal happy self.

When the nurse called us in she felt the bump on his head and said she’d mention it to the doctor.  We looked at the 18 month developmental goals.  His speech was on the low side of average but I wasn’t worried.  Kids are all so different and I hate the way we put them all in categories so early in life.  His head circumference was on the larger side and I joked about my husband’s genes producing large heads.  He had two routine immunizations, which he handled well.

When the doctor came in to see us she agreed there were no concerns about development at this point but said she was going to send us for a skull x-ray just to be on the safe side with his head injury.

“I’m probably going to regret this because if they see anything at all they’ll want you to get a CT scan as well but I’m going to do it anyway, just to be safe.  We don’t want to miss anything,” she said.

I reluctantly agreed and we left with the x-ray requisition.

I had been through x-rays and CT scans and MRI’s before with an infant we fostered so I was not looking forward to putting my shy little boy through the process of an x-ray.  I knew from experience the contraption they strapped tiny people into for an x-ray looked more like a medieval torture device than modern medicine.  The worst part was that because the x-ray emits strong radiation waves, I was not allowed to stay inside the room with him.

I called my husband and let him know what was going on, irritation in my voice.  I was frustrated that we had to put our son through this when it seemed that he was fine.

I went to the hospital as quickly as possible and they conducted the x-ray, promising they would send the results to my doctor who would call me to let me know what they revealed

By the time we got home we were both tired and hungry.  I made lunch and tucked him in for his nap.

I had barely got back down the stairs when the phone rang and my doctor’s name flashed up on the screen.

“I’m sorry, they saw a small fracture so they’d like to do a CT scan,” she said, her voice apologetic.  She didn’t sound worried, and reassured me it was probably minor but that they had to be extra cautious with head injuries.

I grudgingly woke my son from his very short nap and called my husband again with the news.  By now I had let the frustration seep in and I felt like crying.

It had been a long day already and it was just past noon.

Immunizations, a skull x-ray and now a CT scan yet too.

We headed back to the hospital.

I felt horrible.

We were both grumpy and tired.

What did a fracture on a toddler’s head mean, anyway?

What have I done?

At the hospital the doctor reassured me it didn’t appear to be anything serious and gave him some sedation to help him stay still through the CT scan.  It was a relief to have him sedated for the CT so that I wouldn’t have to listen to his fearful cries as we strapped him to the table and I stepped outside the room.  It also gave him a chance to get some much needed sleep.

It was approaching dinner time and all I wanted was to be at home with my family.

Back in the ER unit across from the nurses’ station we waited some more, me trying to keep my son from falling and hitting his head yet again as he drowsily came out of sedation and tried to crawl off my lap.  He was tipsy and clumsy and I had to laugh watching him as I tried to restrain his movements to keep him safe.  Freezies and juice helped move the sedation through his body and reorient his senses.

I had no idea that day how often we would do this in the following months.

I kept my eyes and ears on the doctor as he came and went from the station across the hall.  I tried not to let the niggling fear creep in as I watched him studying the computer screen and talking in low tones on the phone.

I sent messages to my sisters and mother-in-law on our family chat group, letting them know where we were and why.  They promised to pray and sent hugs and kisses.  By 5pm my mother-in-law let us all know that they, too, were sitting in an ER room as my father-in-law had broken his wrist at work!

We laughed at the irony.

Finally the doctor reappeared and I sat up eagerly, waiting for answers and hoping he would be discharging us soon.

Now, I would be able to recognize the signs that something was wrong;

The vague explanations, the carefully side-stepped questions…

We might need to be sent to Orillia, the nearest paediatric centre, by ambulance for monitoring over night.

Did I have someone who could bring me some clothes and essentials?

I called my husband and updated him, asking him to pack a bag of things.  I wished he were here, and we discussed who should go and who should stay with the other kids.  Both of us felt frustrated and anxious and our conversation was short and stilted.  I didn’t want to go…I was scared.  But I certainly didn’t want to stay home while my baby went either!

He promised to bring me some things when I heard more and we hung up.

The next time the doctor reappeared his eyes held concern,

“Is there someone coming to bring you some things?  You will definitely be going to either Orillia or Toronto Sick Kids tonight.”

Sick Kids?

My heart dropped and I felt terror course through me for a brief second until I forced it down.

Sick Kids was not for minor falls.

Sick Kids was not for a small fracture or bruise.

“Is everything ok?” I forced out the words calmly, though my mind was screaming them.

He looked at me and said, “Why don’t we wait until your husband arrives and I will explain everything to you both.”

I knew.

Looking back now, I can see that in that moment something resonated.

Everything was not ok.

This time on the phone my voice broke and I pleaded, “Please come now.  They’re talking about sending us to Sick Kids!”

We both knew something had changed.

When he arrived the doctor came to us and pulled the curtain closed behind him.

I don’t remember the conversation except this.

Brain tumor.

Our son; our beautiful baby boy…had a brain tumor.

When they took a CT scan to examine the fracture more closely, they could see it.  A huge dark shadow on his brain.

It took a complete reorientation to realize that this fall, this minor fracture, was the least of our worries.

Our son’s life was in danger.  Not because he fell four feet onto concrete…but because he had a massive tumor growing inside his brain.

It wouldn’t be til almost a year later, sitting across from my counsellor with tears rolling down my cheeks, that she would help me see it.

“You know, He wanted you to know.”

We could see it faintly…the blessing in the fall…and spoke it.

But to hear the words, He wanted you to know.

He wanted to save your son.

Life.

When the doctor left with sincere, hushed apologies and a promise to return with more details of transportation soon, we crossed the distance between us and clung to each other, our son held between us.

We tried to process our new reality.

Details emerged.

We’d be transferred by air to Sick Kids by the ORNGE Medics team.  They’d be there to pick us up in an hour or less.

It is the little moments that I remember:

The numbness that took over my body as we went through the next hour waiting for the helicopter to arrive.

The way I collapsed in tears into my friend’s arms when she found me at the hospital just before we left, her shift just beginning.  Her words, “It’s going to be ok.  They can treat this.”  And the news of her pregnancy; a light in the middle of the darkness closing in.

The way the chopper blades cast a whirlwind on us as we approached in the dusk, whipping my hair and carrying my son’s frightened cries up into the sky.

The utter confusion I felt when they asked, “When is the first time you were told his head was larger than normal?”

Were we supposed to notice it?

All the times he’d ever cried inconsolably or been sick or hurt came rushing back.

Should I have known? 

Would another mother have known?

The way all of life seemed to hold its breath as we lifted up into the night sky.  I looked down on the bright lights below; at my son fallen into an exhausted sleep on the stretcher and the medics sitting quietly opposite me in the dark.  I heard the words almost audibly.

Steadfast Love.

They held me in that moment of terror and brought a quiet peace I cannot explain.

Over the next twelve hours they told us more.

They told us our son’s tumor had probably been there since birth, steadily growing.

It was shocking in the worst of ways.

I felt helpless and betrayed.

Robbed of my innocence.

So where was God?

Where was He when my son was diagnosed with a brain tumor?

Where was He when a hundred needles were poked through his smooth baby skin?

Where was He when we had to hand our son over to a scrub-clad OR nurse and watch them take him away from us, his cries causing sobs to tumble from our chests.

Where was He when our son’s IV line slipped out of his vein and sat unnoticed, leaving him without the antiseizure medication he needed and causing his little body to begin seizing every few seconds?

Where was He when we begged for healing for his hydrocephalus but instead he had to undergo yet another surgery to insert a shunt?  A shunt that causes other complications and dangers.

Why didn’t God heal our son when we asked him to?

Why him?

Why us?

***

Then the Lord answered Job out of the whirlwind and said:
Who is this that darkens my counsel by words without knowledge?
Where were you when I laid the foundation of the earth?
Who shut the sea with doors when it burst out from the womb, when I made clouds it’s garment and thick darkness its swaddling band, and prescribed limits for it and set bars and doors, and said, “Thus far shall you come, and no farther, and here shall your proud waves be stayed?”
What is the way to the place where the light is distributed, or where the east wind is scattered upon the earth?
Who has put wisdom in the inward parts or given understanding to the mind?
Who provides the raven its prey, when its young ones cry to God for help, and wander about for lack of food?
Do you give the horse his might?  Do you clothe his neck with a mane?  Do you make him leap like the locust?  His majestic snorting is terrifying.  He paws the valley and exults in his strength; he goes out to meet the weapons.  He laughs at fear and is not dismayed; he does not turn back from the sword.
Is it by your understanding that the hawks soars and spreads his wings toward the south?  Is it at your command that the eagle mounts up and makes his nest on high?
Will you even put me in the wrong? 
Will you condemn me that you may be in the right? 
Have you an arm like God, and can you thunder with a voice like this?
Whatever is under the whole heaven is mine.
Who is then he who can stand before me?
Then Job answered the Lord and said:
“I know that you can do all things, and that no purpose of yours can be thwarted.  I have uttered what I did not understand, things too wonderful for me, which I did not know.  I repent.”
(Job 38-42 excerpts)

***

And I fall to my knees in worship.

Because He was right there.

He was right there through 18 blissfully naive months as a monster grew inside my baby’s brain.

He was right there when we turned our backs for a second…and he fell four feet down onto concrete.

He was right there when our doctor sent us for a skull x-ray, just to be on the safe side.

He was right there when the very same day that our son was diagnosed, my father-in-law broke his wrist at work, leaving him without work responsibilities for 6-8 weeks.  Instead he was busy caring for our two daughters and us.

He was right there when the surgeon smiled and said, “It went better than I could have expected.  We got it all.”

He was right there when my gut prompted me to go to the nurse and say, “I’m sorry, I know I am probably just being paranoid but I feel like something is wrong.”

He was right there in that chopper, breathing words of peace into my terror.

He was right there for weeks before our son’s fall, drawing me back again and again to the words in the Psalms…steadfast love.

He was right there when we heard the words…benign.  No cancer.  No further treatment.  Low probability of recurrence.  “I don’t see why he shouldn’t make a full recovery.”

He was there.

He was our Shield.

Our Protector.

Our Light in the darkness.

Our Hope.

I still don’t have answers to the why’s, but they become less important when I see His sheer Greatness and my own smallness.

Suddenly, I don’t expect to understand.

Instead, the why’s turn to why not’s.

Why not us?

As I look around the crowded dining room at the Ronald McDonald Charity House, smiling at the now familiar faces.  She bounces over, eyes shining and bright despite the fact that she and her family have been here for months now while her little sister fights the disease ravaging her body.  This room is one of the most beautiful displays of joy amidst pain, generosity amidst difficulty and hope amidst darkness.

The reality is that every one of us is dying.

The world is broken and so are we.

Sin cast its dark spell and we are all vulnerable to it’s snare.

Today, on May 10th, I watch my son giggle alongside his foster brother — two tow-headed boys covered in sand and water.

Today, I watch him chatter to himself, copying his big sisters’ words and tones.  For months he was oh so quiet and I feared he would never speak again.  But the words keep coming faster and faster.

Today he roars at me while sitting on the toilet, my little lion, and giggles uncontrollably when I cover my eyes in mock terror.  Potty training and copying his favourite story book.

I watch him run across the yard, one foot landing a little harder than the other despite the physiotherapy we’ve done.  It doesn’t make me fearful…instead it makes me smile and feel oh so grateful.

I track his fluids and we go get bloodwork done at the clinic.  As I pull into the parking lot I explain,

“We have to do a little pokey and then all done.”

He looks at me with wide eyes and points to his arm.

“Po?”

I smile and nod.

There is no fear as we go inside, take off his jacket and sit down across from the elderly couple.  I’ve never seen another child here.

He is a calm and adorable as we take our place and the nurse holds his arm.

After a few tears he is happy again and proudly carries his stickers outside.

Today I am not scared.

I am not angry.

I am not sad.

Did God heal my son?

Yes and no.

He will most likely have a shunt for the rest of his life.  He is still developmentally delayed and may suffer from learning disabilities as he grows older due to the trauma in his brain.  He has low sodium levels for a reason we are not sure of at the moment but that are moderated with a fluid restriction.  We do not yet know if he will need antiseizure medication long term.  He is still enrolled in three therapy programs; speech and language therapy, occupational therapy and physiotherapy.

But today I am just grateful.

Because I have my son, and in the last year I have seen my world shift on it’s axis, spin out of control and right itself up inside my Father’s strong grasp.

It’s hard to imagine how life can become more clear, more precious, more meaningful…until it does.

I don’t wish all this away.

I can no longer remember what it was like before.

I know I can’t protect my son…and that brings sweet relief instead of fear.

I know I can’t control my life by doing it all right — my two little boys are a testament to that.  One I protected fiercely from the minute I knew of his fragile existence in my womb.  He was given every advantage and still a massive tumor grew in his brain.

The other faced adversity and fought for survival from the second he came into being…yet he is happy, healthy and brilliant as he shows my son how to build a tower and “reads” him their favourite story.

Why did my son have to suffer?

I don’t know.

I don’t have all the answers and I cannot argue theologically through the why’s of suffering.

I just know that I have a good, good Father.

He is real,

He is good,

I believe

and I am grateful.

I can’t question the God I believe in because it is He who has sustained me, healed me, rescued me, and breathed hope into my terror.

He created a million galaxies in a single breath.

***

It’s getting light outside now, and my hand cramps on the pen.

I set my notebook on the night table and curl up to wait for the inevitable pit PAT pit PAT of my son’s sleepy, uneven stride across the hall.

It’s May 10th

But I feel peaceful, grateful and humbled by the love of my God.

-AF

 

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