On Being Adequate

Are you the parent/caregiver of someone with disabilities? Some days it does feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating. 

I love when I find “new” truths in God’s word. No matter how many times I read Scripture, it's awesome that I always stumble upon something that I’d overlooked in the past.

Take II Corinthians 3:4-6 for instance. “...such confidence we have through Christ toward God. Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

Did God write that just for me, knowing that I would one day be a mom of a child with FASD?

Or did He write it for my son who has FASD?

I am NOT adequate in myself. I struggle daily asking God, “why me???”.

Not in a feeling sorry for myself kind of way, but in a sincere lack of self-confidence voice, being overwhelmed with the enormous, all-consuming responsibility that is involved in raising a child with FASD and disabilities.   Now I read these verses and it hits me: I don’t need to worry about it because I - in my own strength - am not adequate, nor will I ever be adequate.

BUT GOD. I love that phrase in scripture. BUT ...  It means, stop worrying and fretting because just ahead, in the next sentence, there will be an amazing unexplainable, almost incomprehensible truth, that will eliminate all need for doubt if it is just believed and acted upon. So take a deep breath at the “but” and read on….."but my adequacy is from God who also made me adequate as a servant”.

There it is, plain and simple, written forever in black and white. My adequacy is from God!

Therein lies my confidence. I can parent this child because God made me adequate.  And not only did He make me adequate, He specifically made me adequate as a servant.  The definition of  “servant” holds another one of those Greek mysteries which the English language has demolished. It does not mean servile as a slave, but voluntary as an attendant, a reference to the service or advantage rendered to another (as in menial tasks).

I’ve been pondering the implication of these verses for days. My role as the mother of a child with FASD and disabilities is so clearly defined in these verses.

Could there be a more accurate description of what a parent of a child with FASD does than act as an attendant and perform menial tasks. I think not. I am my son’s external brain! I daily assist him with the most menial tasks...
Yes, the underpants go on before the shorts. 
Yes, the milk always goes in the fridge.
Really! There is this thing in our house called a toilet.
No, you cannot play in the snow in just a swimsuit.

Are you the parent/caregiver of someone with disabilities? Some days it feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating.

Be encouraged that your life is an “advantage rendered to another”. Yes, YOU are adequate to take care of your child! YOU are a blessing.

Find strength and meaning in this: “Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

An Inconvenient Life

I read that if people with special needs were classified as a race, they would together be the largest unreached peoples in the world.  In my average size city there are at least 6 elementary schools, 3 middle schools and 3 high schools. Each of those public schools have a Life Skills class with approximately 10 kids full-time. That means that at a minimum there are 120 families with special needs and realistically twice that many families if all the kids on IEP’s, at all schools were counted. A low estimate is there are around 200 hundred families with no church loving them or supporting them emotionally…but there are over 81 churches listed in the public directory. Yet, sadly, not one of them is making an effort to reach this “people group”. These local churches are overlooking an enormous market right out their front window: families with special needs.

I know this for a fact because we have contacted many of them and specifically attended 4 of them with the hope they were interested in starting a disability outreach. The disappointment for us, is that they all talked about it from their mission statements and prayers and speeches: they want to embrace diversity and reach all people and be missionaries… yet in their efforts to reach the world they’ve stumbled over us at their doorstep and kept right on walking.

We have been an inconvenience to many churches; they honestly don’t know what to do with families like mine.

Being an inconvenience is something we have experienced in many places such as restaurants, social outings, birthday parties, classrooms, shops… but the church - - really, it just baffles my mind.  This is supposed to be a place of refuge, yet it is where we have experienced our deepest hurts. Over the years there have been two churches which we attended regularly but were eventually told, “unless you sit with your son in sunday school, he cannot come back.” Tears of disappointment mingle with righteous indignation as those words pierce my deepest soul. As acid poured on an open wound, the rawest pain was at both of those churches we counted the pastor and his wife as truly some of our dearest friends. And while it was not the pastor that asked us to leave, he did not make any effort to begin a disability ministry or intercede on our behalf. Pain does not go much deeper as we dishearteningly left those churches.

Hurt swells and rises in my throat when I know that I am not alone in my experience. If I dare to raise the subject to another family with special needs, I am met with tears of empathy. Why? Why must those who are different be an inconvenience?  Is not the church the safe haven, the hospital for the weak?

On Sunday mornings I wake up with dread. Should I take my child to Sunday School? Should I leave him with me in the service? Should we just stay home? Sunday mornings are an enormous hassle; it’s often not worth the frustration. Is it really worth the effort to go church, to sit with our bodies tense, our minds not relaxed for a nanosecond…waiting to hear the squeal of our child from down the hallway…knowing it is a matter of minutes until the flash of the beeper lights red…  cringing as our number is broadcast on the call box… getting an evil eye from those around us…letting out a deep sigh of discouragement as once again we are called upon to go retrieve our child.

My child needs care and attention 24/7. Twenty four hours a day, seven days a week I am called by God to care for and love my child and I do so willingly and without reserve. By the dawn of Sunday morning my soul is craving after God, my emotions are frazzled, I am on the verge of tears, my body is weary. I want to sit in a pew for 90 minutes and breathe in the sweet peace of the Holy Spirit reviving my parched soul. I want my spirit and heart encouraged and refreshed for a week ahead. I want to know that for 90 minutes I can sit calmly and soak in the truth of God, my mind at peace knowing my child is safe and loved in the same building. Why does the church not feel the cry of  families such as mine?

It grieves me deeply that as I interact with families of special needs all across the United States and beyond, I hear firsthand how many of them are angry at the church, how many of them have been rejected by the church, how many of them have been asked to leave a service. It is just so wrong on every level! Oh how the heart of God must be breaking for His precious children who are desperately craving connection, but are being brushed aside.

Clearly scripture says “Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress”, and while the “disabled” are not specific in that clause, the heart of Jesus was indeed drawn towards this people group.  Read in the four gospels of Matthew, Mark, Luke and John how often Jesus healed one with seizures, one possessed in the mind, another broken in body or those overcome by physical disorder.  Where, I humbly ask is the heart of Jesus via the church for my child, for my family?

Oh Church, take off your “WWJD” bracelets and charms and look around you! Look out your rose colored windows and allow your eyes to linger on the hundreds of hurting families right in your neighborhood. Moms, dads, caregivers… craving a simple 90 minutes of peace and reflection and spiritual renewal. 

I promise the local church, if they would open their doors, their hearts, their arms to those with special needs, they would not even need pursue them - - families would flock to your church! Then those who know nothing of the saving grace of God, would see Him alive via the action of the church, and they would be unable to deny His love. And those who already know the One who loves without boundaries, would be encouraged and renewed each week!

Whether you read this as a family seeking 90 minutes of peace, or as a church member needing to offer hope… my prayer is that in my child’s lifetime this inconvenience will soon end and never again will a family leave a church feeling more discouraged than when they entered.

On Being a Lifeline

We floated the river this weekend as temps reached a scorching 91 degrees - which here in the high desert is HOT, HOT, HOT. As such we were joined by hundreds, honestly closer to a thousand or so of other like-minded, over-heated residents of this outdoor adventure community.

There were couples on air mattresses, grandmas in kayaks, rednecks soaking up skin cancer and lung cancer, SUP's a plenty and families on rafts roped to kids in tubes. The latter would include us: 1 large float tied to 2 smaller floats.

About halfway down the river, after being tugged on continually by my son and his rope, I looked at my husband and said ,"Just once in my life I’d like to float this river without having someone tied to me and constantly pulling me. I just want to relax and float free".

He laughed and replied," Ummm, sweetie, that's your life everyday isn't it."

An epiphany! Right there in the river surrounded by water, noise, sun and people.  Yes, that IS my life!

I am tied to my son.
There is no relaxing.  There is no free float.

Today on the float he hung on to my rope and wouldn't relax or let go for one moment. I did loose my cool with him after being tugged the wrong way one too many times: I threatened to untie the rope if he didn't stop.

And so it is in daily life.  He rarely let's me out of his sight without panicking. To go to school, yes. But for me to go on a date or overnight -- the rope just got jerked involuntarily out of his hand and he fights anyone or anything to regain control and reattach to me.

I realize that indeed he does need the rope attached to me for many safety reasons:  like having no judgment. None. Zero discernment. No ability to differentiate between a stranger and a friend. Not being able to learn from a mistake -- YES fire always burns, NO you cannot eat the dog food or drink from the toilet, NO you cannot walk in front of a speeding car or swing or bike.

I try so hard to be his lifeline and give him the security he needs.  But I do loose my cool.  There are days when I just want to yell at him, "what is wrong with you??? Argh!! Why can't you just cooperate for one afternoon? Is that really so much to ask?"


I know the answer even before the thought or words flow from my tongue.  I need to remind myself that he is developmentally 4 or 5 years younger than his chronological age. His disabilities are invisible, yet oh so very, very real!  He is so handsome, he looks so innocent and "normal". He has no outward signs of FASD. Sometimes I think I need to make him wear a t-shirt emblazoned with the message " Be patient with me I have FASD".

Even on long hot summer days it's good that God gave me such a patient and amazing husband to gently make me aware of the importance, the high calling of being a lifeline, the reality of being tied to someone who so desperately needs me to be there for him.

I think I'll go make a rope bracelet as a reminder.

Being a Thermostat Mom

With the recent celebration of Mothers Day, it’s given me more time to ponder the role of mom.

I’ve had the privileged of being raised by a woman who loves God, prayed (still prays) for me, single-handedly took 3 active siblings on many, many adventures, put up with my teenage moods, doesn’t complain or whine, is loved by all who know her and who adores her grandchildren.  And a double blessing for me: my maternal grandmother was all things my mom is and more. 

Now I’m on the other side, having the joy of being a mom for 7 years.  Granted there were painful years of infertility that preceded the joy of children, but I’ll save that for another time, another place.  In all these 7 years, I find myself constantly learning, ever growing right along side of my boys.  Not sure that's a great thing for the boys, but they are troopers and I hope they won’t remember every single mistake I’ve made. I have to trust the grace of God to use the good and the bad to train them up in the way they should go.
               
You’ve heard the saying “if momma ain’t happy, ain’t nobody happy”.  I’m realizing just how much truth there is in that humorous little quote.

I’ve been contemplating that while dads are thermometers, and quite essential to the well-rounded emotional health of a child, it’s the mom who is the thermostat in the family. My moods, my emotions, my energy determines the temperature of the rest of the family. If I’m tired and grumpy, my kids are grumpy. If I complain, my kids whine. If I’m critical, my kids follow suit…and usually in public. But when I laugh, when I play silly games, when I have tickle tournaments and pillow fights…the entire mood of my family is buoyed. 

When they leave my presence and head off to school each morning, I want their minds and hearts to be filled with positive words of affirmation. I want them to know that they are the most amazing boys, created by a God who knows every detail of their life and who loves them with an unconditional love. I want them to know that whether they have a green day…or a yellow…or a red day…that they live in a home with a mom who will always love them.

Back to the heading them off to school each morning…I’m realizing to do so takes effort and pre-planning on MY part. Sometimes I need to go to bed earlier the night before. Sometimes it may mean I need to stay up later and pack lunches after putting them to bed. But often it means, this non-morning-body may need self-discipline getting up earlier…early enough to get ready AND to have an unhurried quiet time prior to waking them.

Essentially, I’m acknowledging that much of their attitude for the day lies with me: the thermostat mom. 

There is only 1 week of school left: YAHOO!!! I love summer.

And so this summer, I resolve to take my responsibility of being the thermostat seriously. I’m going to explore life with them; I’m going to laugh often; I’m going to build forts and roast s’mores and splash in the river and throw water balloons. I’m going to pray early in the morning and breathe in the truth of scripture. I’m going to get myself into a routine so that by the time September rolls around I’ll be prepared and in the groove.

Beginning now, I’m setting the temperature for my family.

A Little boy Humor

We love to read in our house. During Spring Break, we spent an afternoon in the most amazing bookstore I've ever been in...3 floors of books. And my kids begged to stay longer, and to go back the next day. Books! Books! Books! A home can never have too many books!

We have been reading the Little House on the Prairie series and are in the book “Farmer Boy”. If you've read it, you'll may recall where Almanzo’s parents leave the four children to run the farm for a week while they go ten miles away to Uncle Andrews farm for a vacation. 

The first thing the 4 siblings did was to make homemade ice cream and eat cake, followed by watermelon for dinner. Then Almanzo sneaked into the pasture with the colts where his father had forbidden him to go.

After our reading I asked my boys, “What would you do if mom & dad left you alone?”  They are so innocent at this age, I knew they’d ‘confess’ everything they would do!

Big brother over eagerly replies, “First, I’d go try on all your lipsticks.”

Me smiling, “Hmmm, what else would you do?” 

Big brother, “I’d play with all your pretty jewelery.”

Me, “Okay, little guy, what would you do first?”

Wise little brother smugly says, “I’d go quietly rock in my red chair, and I’d look at brother and tell him to stop doing all the sneaky things he is going to do.”

Me: Baaahaaahaaaa! Of course you would!

Being the Sibling

One recent evening, bedtime was a bit difficult, okay it was a major issue, for Little Brother. He went into one of his moods: dawdling, in his own world, stubborn, defiant, proud, disobedient. It had been a long week and I was frustrated and tired with husband out traveling for work all week.

Little Brother pushed my limits, so I reacted and I told him to get on his pajamas and get in bed. No books, no lotions. When I told him I still loved him even though I needed to give him a consequence I was mostly tired and angry.  As he lay with covers pulled up to his chin, body curled into a fetal position, eyes stubborn with unshed tears...well, I gazed at him, right into his eyes and my heart just broke for him.

My precious little boy: only 6 yet so strong willed. So resilient.  I scooped him up on my lap and hugged him tightly and gently rocked him.  With a quiet gentle voice I whispered, “Is it hard for you being his little brother?”

The dam of tears burst forth and his body shook as he whimpered “Oh yes, mommy!”

He’s only 6. Just six years of life, yet he’s had to bear so much: abandonment, neglect, orphanage, trauma, relocating to a foreign country, Celiac, and a big brother with FASD. Is it any wonder he is strong willed and defiant: it’s his only way to survive what life has thrown at him!

I told him how proud I am of him for being so kind and patient with brother; how I appreciated that he didn’t tease brother or make fun of brother; that he was so compassionate and loving; and that God had picked him as the most perfect brother that Big Brother could ever want. I told him he was such a gift to our family and to brother.

I’m not sure that my words impacted him as much as the tone of my voice, my holding him and rocking him did.

It was good for me to have these moments when something breaks through my weary every-day-mundane routine and I’m able to see beyond Little Brothers stubborn, stand-your-ground-defiant attitude.

I need the reminders that Little Brother is tender and only 6; that his attitude is his protection and defense; that my soft words, my communication and my touch will go much farther with him than a consequence ever will.

Hope

I love Spring. Yellow Daffodils, sweet purple Hyacinth, orange and red Tulips. New color and the promise of new life after long winter snows. And Easter. The reminder of the amazing truth - the uncrushable hope - that Jesus is alive! The knowledge that the cross was not the beginning nor was it the devastating end. 

Hope formed the tiny frame of a baby on earth in a stable in Bethlehem, it reached the depths of despair and darkness on a hill of Golgatha, but it burst forth in glorious joy on the morning Jesus resurrected from the tomb, and that hope continues as He is alive in heaven preparing a place for those who believe Him.

Easter causes me to reflect on many of the great hymns of the faith that I learned as a child. Hymns I want my children to know, to learn the words that bring faith, hymns that share hope.  We have this wonderful book called Passion Hymns for a Kids Heart.  We listen to 1 hymn on my iPad at breakfast and talk about it while we eat. It leads into all kinds of discussion.

I should tell you that my son with FASD has a passion for music: music fills his soul, it flows from his heart non-stop to the extent that if he is awake, he is singing or humming with every breath.  After listening to this hymn, my sweet boy began his two hundred and one-question inquiry. Which led me to breaking the song down into sections and explaining them to him.

On a hill far away....
son: where is Jerusalem mom? how far away, like to Grandmas?

Stood an old rugged cross...
son: I know this mom, its where Jesus was killed

The emblem of suffering and shame...
This took some careful explaining on my part but he's a boy so all that killing and blood stuff peaks his interest and I truthfully told him it was the horrible way that the mean soldiers in Rome would kill the Christians and the prisoner that they didn't like. That it was very painful and very embarrassing because they took all your clothes away and left a person naked before hurting them. (snickers on his part, yes he's all boy and the word "naked" sends him into gales of laughter!)

For twas on that old cross...
same cross from long ago

That the dearest and best...
that's Jesus, the Son of God, He is the one who is the best

For a world of lost sinners was slain...
thats everybody, even you and me.  Jesus loved us all that much.

So I'll cherish the Old Rugged Cross...
that means I'll think of it nicely and be thankful for what happened on the cross

Till my sufferings at last I lay down..
Son: what kind of sufferings mom?

Just here my voice broke..., and I could only speak in a whisper to him as my emotions overwhelmed me with what the Truth of the cross really means for him and every child like him with disabilities. I was supposed to be helping him understand when suddenly my heart was once again growing and learning new insights because of the special needs of this child. 

 

“Sufferings”, I explained, are all the sad things we have to go through in life. 
Like your fetal alcohol. 
It's something you'll always have here on earth. 
I wish it would go away but it won't. 
And friends who get sick, and people who get hurt, and earthquakes that happen...those are all "sufferings".

I will cling to the Old Rugged Cross....
In a whispered still voice I said to him, "Oh dear boy, the cross will always be your hope. That old cross where Jesus had to die, it is your hope, for today, for tomorrow, for everything"

And exchange it someday for a crown ....
My little angel on earth, you have to suffer with all the affects of fetal alcohol on this earth and its not your fault, and I can't fix it. 

But one day God has promised that you will take that Fetal Alcohol and you will throw it down and get rid of it. 

And God promises you that He will give you a crown in heaven. A big, beautiful crown, shiny-er and more sparkly than anything you ever seen. And you will get to wear that crown forever and ever and ever because you are Gods precious child and He loves you.

That my friends, is the hope found in Easter.