Becoming Nothing for Everything: An open letter to mothers of special needs kids.

Dear Tired Momma,

As I sink into the hot water, exhausted, and all is silent except for the ticking of the wall clock,  I also feel myself sinking into the nothingness that comes in battle.  It’s a familiar place yet one I hate to revisit. ” Again, Lord?”  “But Lord, I thought we were good!”

You know it well.  Life was operating at the status quo, your norm, and then……

So, as I soak in this tub, I start strapping on psychological armor, turning off emotions, allowing nothingness to envelope me, I’m struck by the contrast of emptying myself to the soothing warmth of the water covering my weary body.

Nothingness asks for you to be clinical, concise, goal directed, and it often turns you icy.  Nothingness is when your own fear means nothing.  Your own desires mean nothing.  Your own future plans mean nothing.

Your own desires are nothing….because Everything is on the line…again.

Everything is what you do.  Everything has come to define you even when you fight for your freedom.  Everything needs the systematic, robotic approach.  Everything requires all of you.  Everything results in you turning into a cold and calculated assassin, taking out what ever threatens your EverythingEverything can turn you into the crazy mother, fist pounding the table, steely-eyed, and demanding words spoken in a voice that doesn’t sound like our own while glassy-eyed professionals watch you, but you know that Everything needs you to fight with every ounce of strength she doesn’t have.   Everything survives when you are willing to become Nothing.  THAT, sister, is sacrificial love.

I’d say that’s pretty Christ-like parenting, right there.

Momma of a special one, your shoulders drop and you sigh as you read this because you know, don’t you?

I’m not writing to be psychologically correct, I’m leaving that to the professionals.  I’m writing because it’s when we are raw and honest and transparent that our struggles can be used for good.  It’s when we get brave and share what we hold in secret that we can give another momma some hope, something to cling to!

Yes, I know you don’t feel anything but a bone-deep fatigue.  I know you don’t feel that sweet momma love that comes with our tiny innocents.  I know you can’t find joy in your Everything right now.

Yes, I know you feel enormous guilt because you can’t find that all-consuming love and that palpable joy that is instinctive to mothers.

Yes, I know the tears flow in spite of a disconnect to any true and identifiable emotion.

Yes, I know that in spite of covering those previous battle wounds with the band-aids of experience, the scabs are getting scraped off and the oozing is just a slow trickle of sadness from somewhere deep within.

I want to suggest you don’t feel tender love at this present time because God is holding your heart out of your chest.  Its weight is simply too much for you.  Its wild beating must be calmed by the very One who created it, by the One who created your Everything.  Its screaming, raw emotions are too much for you to comprehend, to contain. You can’t be directed by it!  So, He holds it while you and your nothingness go to work…to battle.

When you are ready, He stands with his open hands, holding your beautiful, intact heart, and releasing it back to you. He has infused it with all His love, and it is overflowing, ready to abundantly pour over your Everything.  That’s the beauty of it!  We never have to remain in that empty place!  God has all you need, oh he is champion of HIS beloved Everything.  Remember, it is His Spirit within you who has given you the strength to wage war on His child’s behalf.

  Your Everything was His Everything before the start of time.

For now, allow yourself to crawl up onto Abba’s lap.  Allow Him to wrap you in his arms.  When a quiet moment comes, and it will come, go there.  Sit with Him while he holds your heart.  Cry with Him.  Rest in Him.  Accept His peace.  Give him Everything, for he loves her more than you do.  Give him your nothingness, and he will give you your full and rested heart.

Sister, this is a way of life we moms of special ones need to embrace.  Our Everythings require much, but our Abba is bigger than all the heartaches, disappointments, failures, and flat out scary unknowns special needs can throw at us.

Know, this day, that what you are doing will always make a difference, even if you don’t see it on this side of heaven.

Know, this day, that all the days you become nothing to benefit your Everything are pleasing to your Lord.

 “And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’  Matthew 25.40  NLT

Know, this day, that you are not alone.

With love,

Everything’s momma

Fetal Alcohol Spectrum Disorder Awareness Day – 2015.

Today, September 9th, is Fetal Alcohol Syndrome (FASD) Awareness Day.  FASD Awareness Day takes place around the world with communities traditionally pausing at 9.09am, the 9th minute of the 9th hour of the 9th day of the 9th month of the year, representing the nine months of pregnancy.  I’m feeling like this isn’t happening in enough communities, so I’m turning on a bright light in my corner of the world.

What is FASD?  I’ll let the CDC explain.

Different terms are used to describe FASDs, depending on the type of symptoms.

  • Fetal Alcohol Syndrome (FAS): FAS represents the most involved end of the FASD spectrum. Fetal death is the most extreme outcome from drinking alcohol during pregnancy. People with FAS might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with FAS can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with FAS often have a hard time in school and trouble getting along with others.
  • Alcohol-Related Neurodevelopmental Disorder (ARND): People with ARND might have intellectual disabilities and problems with behavior and learning. They might do poorly in school and have difficulties with math, memory, attention, judgment, and poor impulse control.
  • Alcohol-Related Birth Defects (ARBD): People with ARBD might have problems with the heart, kidneys, or bones or with hearing. They might have a mix of these.

FASD became deeply personal the day our family received the phone call that a precious, 6-week old baby girl needed placement.  The next day, the “bonus baby”, our Emma Rose arrived, and so did our new way of life.  It would take at least 3 blog posts for me to explain the details of our life, especially the first few years.  Suffice it to say, we were blessed with just about every Early On service available and multiple physicians from multiple specialties.  My words of  “I will never take a fetal alcohol baby.   I will never take a Crack baby” became, “She’s a fighter.  She will overcome.  We will do whatever it takes.”  Here is the humbling thing:

God has a way of turning our “nevers” into “forevers”.

It’s then about our embracing and celebrating them instead of resenting them.  Oh, the blessings we would miss if we had it our way!  One look into those endless eyes, one diaper change, one feeding, one night in our crib, one snuggle and there it was….she was ours!

I wish I had kept a journal of all the people who were instrumental in her early years so she could read the stories of love poured into her and prayers poured over her.   Countless stories of our oldest daughter always being the second mom and being my backup caregiver.  Our oldest son swaddling her tight and rocking like a mad man while he watched Monster Garage until she could finally relax to sleep.  My Mom weeping over her, holding her stiff little body while she screamed in pain while Mom prayed for her healing.  My husband and I never feeling more in God’s will than when bonding with, loving, and nurturing our wounded baby.  Our neighbors loving her always with unconditional love and acceptance even when finding  this child, unannounced, in their house.  (She was an escape artist in spite of alarms on doors!)

So, today, on FASD Awareness Day 2015, I honor my very brave and strong survivor daughter by exposing a piece of our family’s fabric that sometimes looks pretty tattered and worn.   We aren’t always good at the challenges FASD offers but today, I honor her by being a voice.

Some who live with FASD were basically “pickled” throughout their prenatal period by alcoholic moms, and in the past we have focused on those easier to diagnosis, well-documented cases.  Now, we must be proactive in our education of women.  We know so much more!  NO time is a safe time to drink.  A college student’s ONE-TIME weekend of binge drinking  can result in a child with FASD.  Physicians used to look at kids with certain facial characteristics and make an FASD diagnosis based on whether or not those were present.  Now, we know that those facial characteristics are found in a very small portion of kids who still have FASD.  The damage to the brain in the quickly dividing cells of an infant happens at all stages of pregnancy, and oftentimes, Momma doesn’t know she’s pregnant when she partakes.  Alcohol, the great toxin:

Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far
the most serious neurobehavioral effects in the fetus.”
—Institute of Medicine Report to Congress, 1996
Consider this too:
Alcohol can trigger cell death in a number of ways,
causing different parts of the fetus to develop abnormally.
 
Alcohol can disrupt the way nerve cells develop, travel
to form different parts of the brain, and function.
 
By constricting the blood vessels, alcohol interferes with
blood flow in the placenta, which hinders the delivery
of nutrients and oxygen to the fetus.
 
Toxic byproducts of alcohol metabolism may become
concentrated in the brain and contribute to the
development of an FASD.
– FASD Center for Excellence.
Fellow moms, please have these conversations with your teens.  You don’t have to have the big, scary sex talk to educate them on the dangers of alcohol while pregnant.  Your future grandchild will thank you.  That’s a sobering thought, right?   I’m pretty sure most of us are completely unaware of the devastating impact even a small amount of alcohol has on a developing brain.  Below is a link for more information:

http://www.cdc.gov/ncbddd/fasd/documents/fasd_english.pdf

So, what to do if you’re pregnant and have consumed alcohol?  Be honest.  Tell your OB/GYN and then tell your baby’s pediatrician after his/her birth.  If you are making an adoption plan for your baby, tell your caseworker.  It is imperative that they document the information.  Here’s why…..getting a diagnosis of FASD is incredibly time consuming and difficult without Mom’s honest admission of alcohol use.  Children go years without the proper treatment and worse off, the proper education, discipline, and care.   Love your baby unconditionally by making that a well-documented part of his or her medical chart so that if problems do arise in the future, your baby will have the benefit of a quicker diagnosis and hence, appropriate services.

So, on this FASD Awareness Day, I wanted to educate in general and be a voice for individuals and families with FASD, and  I wanted to be a cautionary voice to women.  If you are struggling with FASD yourself,  I want to leave you with God’s voice straight from HIS heart to your’s, to our Emma’s heart,  to every man, woman, teen, and child who was traumatized by alcohol or other substances before birth.  God has a love letter for you!  Read Psalm 139.  Below is my very loose paraphrase from verses 13-16.

I created your inmost being; I know exactly how your mind works even when others don’t.  I know your heart.

I knit you together in your mother’s womb: I planned you even if she didn’t.

Praise me because I fearfully and wonderfully made you and I don’t make mistakes: You are an exquisite masterpiece.  I adore you.

You weren’t hidden from me as the toxins took their toll.  I knew this was happening:  Trust me enough to be okay with not understanding the whys.

I saw the consequences of her choices:  Know that I cried.  Hating her will destroy you.  Choose forgiveness.

From the beginning of time, I have had big, amazing plans for you regardless of your beginnings. Rely on me, hold my hand.  I’ll walk you into the future.