Jealousy, Resentment or Reality?

I want to establish this in your mind before I begin sharing: my husband is a generous man. Whether it’s a stranger or a family member, he will offer assistance when needed. Sometimes money; sometimes muscles.  And he's been known to bring home flowers on a Tuesday just because he loves me. I drive a car that keeps me & my kids safe in any weather. I've been showered with my fair share of bling.

Recently, as a gift, a girlfriends husband gave her a week away at a beach-house with her girlfriend.
At the beach.
With a girlfriend.
With no children.
For a week. All pre-arranged as a surprise for her.

I can hardly fathom the concept.
Jealousy rises ferociously in my heart.
Not because this friends husband set the bar so high, it’s simply that this is gift is so far out of my reach, there is no use longing for it.
But I do.   I long for it to the point of silent tears flowing across my cheek.
Its something I’ve wished for, hoped for, for quite some time.  Eons before her husband handed her this gift, my heart had craved time alone at the beach.
Yet, maybe I'm not so jealous as I am a bit angry and resentful.

The fact is, I have a little boy with a list of medical and neurological disabilities, and I’m not sure my family would survive if I were gone more than 36 hours.
I don't know what it's like to go away - - to leave and actually leave my responsibilities behind.
My sons disability is my life.
He is dependent on me in ways that go beyond the Webster defined meaning of codependency and attachment.
Oh, I have tried to remove myself for a couple days: I've gone to a women's retreat for a weekend and left my son. Something always goes terribly wrong. And the reaction it causes in my son continues for days, sometimes weeks, after I return.

My generous, wonderful husband and I have been planning on going to Greece to celebrate our milestone anniversary. We've planned and saved, bought guidebooks & maps, pinned ideas and hoped with anticipation.
The reality is setting in: I left dear son for two nights with hubby a few months past and all hell broke loose with our dearly loved & trusted respite care provider. It was no fault of hers. It was all the little guys doing.
I left for 1 night last month and the backlash was horrendous at home and at school.
If I can’t leave my city, how can we possibly go to Greece???

This is a struggle for me.

 This is a part of motherhood not mentioned in scripture or parenting books.
This goes beyond the normal motherhood lack-of-sleep, tired, always putting-yourself-last-for-the-sake-of-your-children syndrome.
Raising a child with special needs requires far more.
And to be honest, there are days when I just don't have it in my selfish human nature.

Do I want to get away by myself for an entire week of writing, meditating, reading? Oh my! Absolutely! I can't even fathom the idea.

Do I want to be with my husband  on an island in Greece with zero (0) children, no phones and no work?
Yes! A thousand times yes!

The reality is this: it’s not my season in life. And the harsher truth is this: it may NEVER be my season in life, where my son is concerned.

I wrestle with my selfish sinful heart daily. Ok, let's be honest...  if I don't spend time with God on a regular basis, I'm not worth anything to my family who so desperately needs me.

My child needs me in ways that my friends family will never depend on her.  He needs me in ways that I will never, ever be able to communicate to my girlfriends. 

For now, for this day, for this moment… holding my sons small hand and guiding him through life is my calling. And if I look into his eyes and remember that his life is a gift to me, that he is an eternal soul who needs my love and wisdom, who desperately needs me to be his external brain… then the jealousy will melt away like the snow falling out my window.

Still, I'm not giving up all hope that one day the white sand and blue oceans of Greece may be mine.

A Mothers Theology

I love driving my youngest anywhere because he sits in his car seat and sings songs he has made up. He sings about whatever is on his mind, creating his own little melodies, singing usually off key, but oh so content.  The songs are always from his heart so I’ve learned to just listen quietly without correcting or commenting until he is finished.

On a dreary still-winter, not-quite-spring morning as we drove to school his musical composition began with the long sad walk down the Via Dolorosa, how the mean people put Jesus on a cross and stuck him with a spear, how a lady named Mary came to see him (pause, right mom, her name was Mary?), how the angel Gabrielle came and said don’t be sad the Holy Spirit took him away, then Gabrielle (that's not a typo - - he INSISTS the angel is a girl!) left and went to another Mary and told her to name her baby Jesus but they went to the town and everyone was closed so they found that place with hay and made a bed for her baby, then Joseph went to Egypt where the Pharaoh was mean and made the people slaves but the momma put the baby in the basket and the princess saved him and he grew up and went and saw the bush on fire and God said “TAKE OFF YOUR SHOES, THIS IS HOLY GROUND” so he did and he heard God say I AM. So he took off his shoes and went and saved the people and they came to the sea and Moses put out his hand and the sea opened and the people went across but the chariots drowned but the people complained. And God was mad. And the  people complained again and its so sad.

And…. then we pulled into the school parking lot and I had to interrupt him. Granted, his chronology was quite out of sync, but his knowledge was right on track.  Before we said our morning drop-off prayer, I made a point of telling him how proud I was of him singing from his heart what he knows about Jesus, and I prayed for him to share his love of Jesus with his friends so they could have Jesus live in their heart someday.

All the while he sang his composition, my heart rejoiced that he is singing about Jesus.

Now remember, all of this took place in the course of 10 minutes. 

As I dropped them at school, in the solitude of the car, the Holy Spirit quietly encouraged me with these thoughts:  my children are listening, my children are learning, my children pick up their theology from me. Their theology is whatever I live for them. Be encouraged as a mom: the years of reading Bible adventures, of repeating Catechism with them, of memorizing Scripture, of praying for them….it is not in vain. 

Do not fret over new diagnosis from doctors, do not grow weary over hours spent in therapist offices. Do not grow tired over the never ending pile of laundry and the dirty floors. Keep on training even when it appears that all they do is fight and whine and need attention. No, they have not kneeled down by their bed and asked Jesus into their heart, but they are soaking up my theology daily. I am laying a foundation for them that all the gates of hell cannot shake.  Do not be discouraged dear mother, take hope and peace in the power of the Holy Spirit to move in their hearts, even at this young age.

He knows the way

This journey on the unknown highway of FASD has been an unplanned adventure: it wasn’t written on my heart or in my journals.

I simply do not understand FASD.

This Spectrum Disability encompasses so many variables it is mind boggling.  While there is much information on what FASD is, how to prevent FASD, statistics scary enough to chill the heart of every parent... there really isn't much at all written along the lines of hope for a parent of a child with FASD.

Truth is a parent is always a parent, no matter what age their child has matured to. A parent always looks at their child as their child.  For parents who are raising children with FASD the truth goes even deeper: odds are very high that our FASD child will remain somewhat child like their entire life, not figuratively in a mothers heart, but literally so.

Leading child “experts” such as Michael Thompson, James Dobson, Kevin Leman, Gary Ezzo -- not one has written a guide for the parent of a child with FASD. Search Amazon and find 191 topics on raising boys, but not one of them reaches the parent of a child with FASD.

Our children with these Spectrum Disorders do not fit the mold. Any mold. They are unique like no other.

One day they love on you as if you hung the moon; the next day they accuse you of child abuse. They joyfully comply with the boundaries you have set in the morning, only to have a raging unexplainable screaming melt-down over the very same rule in the evening. They adore and love their siblings, then an hour later blindside them across the back with a giant stick. Whatever I did yesterday that kept them calm, even keeled and healthy...today is sending them into a frenzy.

I am not on a quest for Nirvana yet I have learned about Qigong, castor oil, flower essence and other Eastern medicinal treatments you may not even know existed.  I have charted our eating habits meticulously. I have eliminated all things processed, genetically modified and unnatural.  I have tracked the phases of the moon closer than my own monthly cycle.  I check the barometric pressure and weather forecast every night before bed.

There is no limit to my self education when it comes to my child's well being and training. I will do whatever I can humanly do as his mother to give my child opportunity to reach his full potential.  Yet, that is my great unknown: what is his full potential?  That not knowing if he will mentally even mature to age 16 is something that can worry me to death. Literally if I allow it.

And so I rest my passion, which is at times all consuming and utterly draining, I take my fears of the unknown,  the frightening FASD statistics that tear at my soul and I lay them at the feet of throne of God, and with all my heart I cry out for wisdom.  With tears flowing I remind God that He promised in Job 23 that even when I am confused and when God does not appear to be near -- yes, He does know the way that my child will take. And my soul finds rest in this hope: the journey is His, not mine.

Slowly I peel my clinched whitened fingers off the soul my child.  I do this often, if not daily. It is not a one time release, for I habitually take back what I have given. So continually I am learning, this place of finding rest is one where I must return to.  My soul will only keep this rest as I trust in the promise: He knows the way that my son will take.

I Don't Ask For These Days

I read in James in the morning “if any of you lack wisdom let him ask of God who gives generously and without reproach…”

I prayed for wisdom in the morning.
I prayed that I would be generous and without reproach toward my son today.

I didn’t know in the early morning quiet how desperately I would need that prayer by the afternoon.

It’s raining again today. All day.  A wet, cold, slushy miserable rain; my sons body cannot handle a change in barometric pressure.  The more miserable and penetrating the rain, the more miserable my son seems to be.  Today was such a day for him at school.  Such an afternoon at home.

He is in the quiet room, working on writing…and not at all quietly. 
His face is red and blotchy and tear-stained. His nose dripping faster than the tears. 
He is telling himself angrily “I can’t do it” and repeating “what? what? what?.  I can’t write”.

At school he refused to go to reading group and refused to write.
I have him writing sentences while I clean the floors and now sit to journal my prayers.

I have held him quietly.
I have prayed with him.
I have rocked him.
Now he must face his consequence: refusing to work at school means missing out on play time at home and finishing the school work, plus writing more sentences.  Correctly. Not angry and sloppy.

I know he can do it. I know is able.
His first sentences are perfect and prove his ability. He thinks his consequence is done with two sentences.
I tell him he has two more to write. His next sentences show his anger.

It has been over 45 minutes of him sobbing and crying.
I hold him again to calm him. I leave him to write.
I sit in my office. My own heart is sobbing, my face is tear stained as well.
I sit. Praying. Crying. Journaling.
At times like these it is all I can do to cling to scripture.

Snowflakes

Its been a while since I posted, but if you are reading this, you are most likely in some manner connected to a person who has special needs...so I don't really need to take your time explaining. You already get it. Life happens. And the best of intentions get set aside to face the demands of each day.

Winter 2012 has finally arrived and quite honestly I could not be happier. I love the snow in January! As I drove home from dropping kids off at school I savored the quiet in the car - no kids, no radio - just me talking to God and watching the snow fall. The cold flakes leaving beautiful patterns on my windshield,  I thought how each child is like a snowflake.

No two are alike. Each snowflake is incredibly intricately different, yet no snowflake is overlooked or discarded just because it is not the same as the other snowflake.

My child is often a snowflake:  pure, innocent and beautiful.

Sometimes like a snowflake, he too is icy and cold.

Sometimes like a snowflake as it lands and quietly melts away, he is held in my hand only to disappear before my eyes, but in that brief moment I see joy glistening and sparkling.

The snowflakes also remind me of Gods love falling on our lives, covering the dirt, the sin, the ugliness of my heart. And in its place God provides cleansing, beauty and restoration. 

My children, like each snowflake are a unique gift from God, given for me to treasure and enjoy for a brief moment. I know all too soon the sun will burst forth casting radiant beams to melt each tiny flake. So I breathe deeply, inhaling the cold air, feeling the icy tingle on my uplifted face and I thank God for the precious life he has entrusted to my care.

FASD Awareness Day

Honestly, I don't even know where to begin with this post.  My mind is so muddled, so utterly exhausted from the emotional and physical strain it is to transition back into the school year. I'd like to sleep for a week. I'd like to cry for a week.

Today is a day I never, ever imagined I'd be acknowledging.

Seven years ago I first heard of Fetal Alcohol. It was something that happened to children in far away poor countries, to babies in orphanages. It meant they looked funny and were difficult children.

Six years ago I adopted a boy from a far away place in the harsh wilds of another land. The doctors said his mother drank alcohol, but look how normal he was, he did not look like a FA child.

Five years ago my son was increasingly becoming more difficult. He was exhausting to keep after, but being a first time parent, I had no standard to compare him too. Everyone said it was a normal phase he would grow out of.

Four years ago I began researching the internet for information about FA. The more I read, the more I listened, the more I became convinced my son had FASD. Local professionals didn’t agree; they told me medication was all he needed. I tried him on medication for 3 months and I watched his appetite disappear and he became a zombie, until I said “absolutely no more, he is a toddler and I am not going to do this to him”.

I researched more and flew with him to a clinic where they specialize in pediatric Fetal Alcohol. They confirmed a dx of FASD.  I connected with a specialist, Diane Malbin, and my husband and I had weekly life-coaching, parenting phone conferences with her.

Thus began my "new normal".  My life changed and will never be the same. No matter how much I long for it, those days will never return.  Now, my quest is on his behalf.

I cannot even guesstimate how many hours I’ve spent attending conferences, reading books, making phone calls, researching the internet for articles, groups, professionals, books, dvd’s, resources...anything that will deepen my knowledge and understanding of FASD.

I was so uninformed.  NO, actually, like most of the general public, I was blatantly mis-informed. Fetal Alcohol is not just “a funny looking face”.  On the contrary, my son is the most adoreable, handsome little guy you will ever look at.  But my son is far from being a typical normal child.

FASD is a neurobehavioral disability. It is life long. It affects a persons brain, just as severely as diabetes affects ones kidneys, just as severely as MD affects the muscles. Yet often, there is no visible sign...no facial defects, no deformities.  Just abnormal behavior. Which in reality, is normal behavior for a child with Fetal Alcohol.  But you can’t see visible signs so the child is most often labeled uncooperative and disruptive.

FASD is the leading cause of Mental Retardation.

FASD presents itself as ADHD, Autism, ARND, Aspbergers, OCD, RAD, ODD, Bipolar, dyslexia, disnomia, MR and just about every other cognitive and or mental disability you can name.

No kidding.

Why do I tell you this?  I am not just rambling and seeking your pity. Although, I may be venting a little.

I am writing so you will begin to grasp how pervasive, how permanent, how life changing Fetal Alcohol is.  So that you will realize that if 1 in 100 live births in the US are affected by FA, that means you - - yes you -- you do know someone who has FASD.

Most of all I am writing because if I educate just one person then I have accomplished what I set out to do.  FASD prevention is all about educating others.

I hope you will pass this blog on to others.  I hope you will comment and express your agreement, your thoughts, your disagreements and your insights.  It is a very good thing to create dialog.

How to help someone with FASD....that I will save for another post.

FASD: An Invisible Disability

The intent of my blog is to educate people about Fetal Alcohol Spectrum Disorder and to encourage families who are living with FASD.  The hardest part of FASD is that it is a relatively unknown disability. 

Most people I encounter,  teachers, principals, doctors, neighbors and friends, have never even heard of Fetal Alcohol.  And those who have heard of it think FA is something that a baby might be born with that disappears quickly after birth, or can be cured with medication.

The startling reality is this: There is NO cure. It is lifelong.

I am reposting part of a speech that Jodee Kulp gave one year on FASD Awareness Day. She is an amazing mom who is raising a daughter with FASD, and she has been a strong advocate in the US for educating others about FASD.  Please take a look at her website or read the book, Braided Cord, written by her daughter Liz to learn more.

... Alcohol is devastating, and most devastating to the weakest and most vulnerable in our society -- the unborn child. Alcohol exposure is the leading known cause of mental retardation in the western world - US, Canada, Europe and Australia.

In the United States 10,657 babies are born daily (1999 US numbers are listed below)

• . . . 3 will have Muscular Dystrophy
• . . . 4 will have Cystic Fibrosis
• . . . 4 will have Spina Bifida
• . . . 4 will be infected with HIV
• . . . 10 of these babies will have Downs Syndrome.

Researcher and fund-raisers are working for these children.

But -- are you ready for the figures --

• . . . 20 babies will be born with FAS
• . . . these children will have visible facial and other physical deformities
• . . . they are the lucky ones

People will see with the eyes, understand and help will be provided. These physical manifestations are not caused by MORE drinking but simply because of the day in gestation the pregnant mother chose to drink.

Today is a day of awareness.
NOW -- are you really ready for the tough issue

• . . . 100 babies will be born with Fetal Alcohol Effects
• . . . these children's deformities will be hidden within their bodies, in their brains and organs.
• Most will go undiagnosed.
• Most will live a life with little help with behaviors misjudged and struggling with learning and emotional issues.

Today is a day of knowledge.

Brain damage is non-reversible and a permanent condition that an individual must live with for the rest of their life. The person with prenatal alcohol exposure does not have the choice of NOT being impaired, yet has the responsibility of learning to live and to fit into a society that neither tolerates nor understands their impulsive behaviors.

I hope this has been a sobering post for you to read.

Most of all I hope you will doing something.  Please tell everyone you know:  there is NO safe amount of alcohol consumed during pregnancy.

0 drinks for 9 months.

It's that easy to prevent another child from ever having to live with this lifelong disability.

I would love to hear from you if you have any questions or thoughts about FASD. Please email me or leave a comment.