Unshaken Hope

Continuing to share some excerpts from my journals over the past few weeks. Learning to look for more stones of remembrance along the way.


August 28th

The God of all comfort is who I cling to in these moments.  He is the only hope for those living with disabilities. He will see me through this temporary disability just as he continues to do for my child's permanent disability.


August 30th

Today was filled with much doubt and nagging fear, thoughts such as this cannot be happening and how am I supposed to handle this. Maybe it's all the hormones, maybe its the boys being cooped up inside and unable to breathe because of smoke filled skies, maybe it's the days of waiting for what is unknown. Today was just all around depressing.

Tonight I read Psalm 43:5 "Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation and my God"

I will not allow this cancer to cast me down and bring so much turmoil into my life that I miss moments with my family. Hope, not worry. Live in the gratitude of the moment, because the next moment is not guaranteed.


September 1, 2017

This morning we met with Dr. H for my pre-op appointment. He did an ultra-sound to show us where the cancer is appearing. It looks hopeful that it is not spreading.  Now the countdown to September 12 begins.

In the afternoon we escaped town to head to the coast for fresh air. I need ocean therapy. And Boy Wonder absolutely thrives in the sand and salt water, where every sensory craving he has is blissfully and continually met.

A New Path

This summer finds me floating through a new door. Not one of my choosing, but one that opened and pulls me through.

Grab a cup of coffee and I’ll fill you in:

It all started with a phone call in July when I heard the words, “it’s just a routine procedure, but your mammogram showed some areas of concern and we’d like to take another set of views, it's probably nothing”.

So July 17th,  once again, I subjected my ta-ta’s to being placed in a vice, twisted and squeezed until I could barely breathe, when the girl so sweetly says “take a deep breath and don’t move”.   Umm, sure, did you notice you’re smashing my ta-ta’s in a press...where exactly did you think I was going? Then I get to breathe for 30 seconds while they turn the machine to find a new, unbelievably awkward position in which to flatten me. Again.

But it’s really the “wait here while we have a doctor read these” comment that sends the warning bells blaring in my head and causes my stomach to drop.  The pathologist returns and informs me that it would be beneficial to have a streotactic biopsy, soon.  (Okay, she said much more than that but my mind was a bit blurred.)

In the meantime, I met with an Orthopedic Doctor because I have a partial thickness tear of my rotator cuff.  Three days after the steroid shot and percutaneous needle treatment has taken effect on my left side, allowing me to increase my range of motion, I head back to the radiologist office on August 4th, for my right ta-ta to once again be the star attraction.

Let’s just say that this is not a procedure you want to have. Maybe it was just my lucky Friday, but the doctor was nice enough to apologize for the twisting, vice gripping, and steam rolling that was apparently necessary to insert needles into my right ta-ta... and reward me a generous $5 Starbucks gift card.

Three days later, the pathologist said I need to see a breast surgeon, and she referred me to a specialist....who had an opening Sept 18th.

I thought, well, that must mean it’s not too big of a deal if they are fine with me waiting another month.  However, my doctor called the next day, using the “C” word for the first time and said she wanted me to go see someone immediately and not wait until September.  And just like that, on August 10th, I found myself sitting in a waiting room with my husband.  

Now two days may not seem long, but for me it was 48 hours of unknown anxiety and nerves, because life with Boy Wonder doesn’t stop. Ever. He keeps going & going & going. Xanax was my lifeline to keep calm in front of my boys and help me sleep at night. One shouldn't just drop the “C” word to a patient and have them wait 48 hours.


Part 2

We meet this doctor (who was not the one we wanted) who had an available schedule. He went over everything. Yet what I remember most was having a panic attack - - in a doctors office - - a full blown panic attack and overwhelming feeling like I couldn’t breathe. After 15 minutes of talking to us about A-typical cells and invasive ductal carcinoma and lumpectomies and mastectomies and genetic testing and radiation treatments and the need to reduce stress in my life...he paused to ask if we had any questions? 
Ummm. Blank stare. 
Momentary silence.
Yeah, probably a million of them, but I have no idea where to begin because this isn’t really happening to me, is it?

At this moment, I was so thankful for my handsome Prince being by my side, looking a bit dazed like me, but asking rational, calm questions.  I left feeling overwhelmed, scared, and uncomfortable with this doctor.  We got to the parking lot and I let the dam of emotions burst to my man with a cry of “how do I do this and handle Boy Wonder?”.

That afternoon I asked a few amazing women to pray that we would get in to see the other doctor for a second opinion.  I found myself needing to take a Xanax every 8 hours. My stomach was so upset and anxious, I could hardly eat.

Part 3

Monday, August 14th, Dr. H’s office called to say they have an opening on the 16th. This was the first stone of remembrance I began to build on.

Dr. H took over 2 hours to go over everything with us using graphs and handouts and printed materials. He explained every detail and the ‘what if’s’, paused for us to comment, then patiently explained more. We walked out of his office knowing he was a definite God-send to us, and we were in good hands. He set up an MRI early the very next morning.

August 17th I walk into radiology, where the receptionist and I are now on a first name basis, having had a mammogram, a shoulder x-ray, a shoulder MRI, a second mammogram, a sterotatic biopsy and now a breast MRI.  My ta-tas and I rejoiced that this procedure simply involved lying on a table, taking a Xanax, and being slid into a noisy, claustrophobic tomb. No poking, prodding or vice grips were present.

I left the MRI, and headed for genetic testing to see if I carry the BRCA 1 or 2 gene.

That evening the amazing Dr. H called me before leaving on vacation to tell me the MRI found a tumor all the other tests had missed.   Another stone of remembrance is placed. The fingerprints of God are showing up on this journey.

Part 4

August 24th I open this door with deep breathes, with clouded eyes and silent prayers.

This passageway leads me to Dr. O, my oncology radiologist, who I come to view as one amazing doctor.  Compassionate, concise, thorough and funny. They are calling it Stage 2A breast cancer.  I place another stone of remembrance, and praise God for his guidance in all this.

These are days of testing and waiting.
Waiting in itself has become a test.
There will be more to share on this journey as I watch the stones of remembrance grow, as I learn how I am ever going to handle this while living with Boy Wonders unique needs, and how God will make Himself real to us.

I am on the other side of the door. Walk with me.

Hope that does not Disappoint

Often, living life in a home where there is a child with “high needs” can be exhausting.  It can easily be discouraging when we see our children failing to meet the milestones that typical children are soon passing.  If I'm not careful, that discouragement so quickly crawls into the crevices of my mind and I must remember that I am learning to live a different dream for my child.  

 
There is sometimes a grey cloud cover on this journey, hovering ominously on the horizon, as if Eyeore has taken up residence in my home. And I don’t want him here, gloomy and mopey, always certain that the next step on the journey will bring disaster and more disappointment.  I want my home to be one where Christopher Robin would love to live: full of anticipation, adventure, laughter, and hope.

Hope, in my mind, is a key word for parents, for caretakers and for children living with developmental delays. Actually, especially for children with special needs. 

Hope. Not as in I want something to happen or be the case,  not referring to the lucky feeling when we hope to win the lottery, nor focused on the wanting when we hope to get a bike for Christmas.

I’m referring to lasting hope.  
Hope that does not disappoint. 
Hope that is bigger and deeper and surer than any diagnosis. 
Hope that looks beyond the possibilities of cures and medications.  
Hope, the desire of some good with the expectation of obtaining it. 
This is my hope that does not disappoint: Christ my Savior, with the promise of heaven to come.

Hope which reminds me even though we had major behavioral set-backs today, I know that tomorrow is a new day filled with grace. Hope that reassures me in-spite of my shortcomings as a parent, my child can set his sights on One who is greater than me. It is the object of my hope: the sure and steady anchor in the storms of disability, Christ alone.

And in light of that hope, on hard days, I can choose to take a deep breath, to offer an embracing hug and kneel in quiet prayer and say the words “I love you, I forgive you”.  It is because of a future hope, secure and true, that I know that I know, that my child has a purpose and plan in life. It is this hope that gives me confidence that even when I fail and we have to try again tomorrow, one day there will be no failures, there will be no more disability.  And I exalt in the hope of that glory! For THAT hope, that anchor for my soul, does not disappoint.

To Just be the Parent

To my surprise, one of the most read posts on this blog was when I shared the disappointment and hurt that had come because the life of our son was an "inconvenience" to the church at large. 

I wrote from a heart that had been hurting and famished for seven years, "......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?"

While I'm humbled my words resonated so deeply in the heart of many families, it also saddened me to know that I was indeed, Not Alone in my discouragement.

We've recently left the Seashells behind and moved back to the Snowflakes where we began attending a small church where we knew some other families with disabilities had joined.

On a recent Sunday the pastor taught from Luke 18, when Jesus told the disciples to allow the children to come to him. He explained how Jesus was an anomaly in his culture by the fact that he valued children, when he welcomed them to his side, when he indicated that God valued every life. If you read the Gospels, you'll find about 2/3 of Jesus's ministry was to those who were disabled!  No one was insignificant to Jesus! Praise God that heaven is waiting with open arms to welcome our children with disabilities into an everlasting life of wholeness and healing!!!

After church there was a student ministry parent meeting to kick off the school year. Hesitantly and cautiously, not at all hopeful, we went.  We listened all the while I'm thinking, there is no way Boy Wonder is going to fit in. He won't be accepted. He never has been.

So I prayed quietly and waited til the meeting was over and we introduced ourselves to the youth pastor. I won't go into all the details, but I burst into tears as soon as we got to the car.

Never before, in 10 long years, have we been to a church that actually welcomed my son fully and freely. We've been asked to create programs, we've been prayed for, we've been patronized, we've been an annoyance, we've been tolerated...we've been asked to leave.  Never,  EVER,  have we been encouraged and welcomed, and asked to just be his parent.

Words fail to express the joy and relief!  I look forward to this rare, new season where I will get a momentary break from being his external brain, his caretaker, his shadow, and his teacher ... and just enjoy being his parent.

Three years ago I wrote: "... 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."  I'm filled with gratitude that that prayer was answered for our family!
 
And for others, I want to share hope that there exists ministries such as The Elisha Foundation and Joni & Friends, who desire to come along side churches and help them host respites & retreats for families like mine.  It encourages me to know there are people like those at this local church who are willing to give of their time and energy to bless the lives of others.

For those of you who can't make it to church due to exhaustion and overwhelming needs of a dependent, Key Ministry has some incredible resources for online church. Visit their website Church 4 Every Child to learn about Front Door church and online services from Community Bible Church.

I hope this post is shared and forwarded too so others can know that prayers do get answered. There are people who truly care about families living with disabilities. You are not alone. There is hope!

Longing and Gratitude

Since the day I first watched this brief video it has been embedded in my mind. The simple, yet utterly profound, words of this young man living with Cerebral Palsy (CP) have been pondered in my heart over and over.

My child does not live with CP, however, I would dare to say my Boy Wonder, who has FASD & Autism, experiences so many of the same feelings as Roger Flournoy, Jr. when he stated: 

"I want to be everybody's friends and that hurts me because I can't help the fact that I have CP".

Boy Wonder is one of the most handsome young men you will see, therefore, the expectation is that he is typical. However, place him in his peer group and watch as the FASD unfolds itself in his dysmature behavior and social dysfunction.  He did nothing to deserve FASD, and there is no cure for FASD. He will struggle his entire life with the hurt feelings of rejection because of a  neurological disability.

You may not realize that CP and Down-syndrome are visible disabilities that often cause people to shy away because they don't know how to respond to the physical differences they see in someone.

While Fetal Alcohol Spectrum Disorders and Autism/Aspbergers are invisible disabilities that often cause people to shy away because they don't know how to respond to the emotional differences they see in someone.

All of these often lead to the same core feelings for our kids: loneliness.

“The hardest thing is loneliness. I am my own greatest enemy when I am left to my loneliness.” Roger

My heart weeps when I hear those words! For Roger, for my neuro-typical son, for those who are non-verbal, for all the thousands of kiddos living with FASD.  The loneliness is so real.

Spoiler alert: the wisest words on this 4 minute video are these, "Jesus paid the ultimate price and if I don’t totally worship him it’s like I don’t appreciate him dying for me."  Roger Flournoy Jr

Those are the words I have pondered over and over in my heart the past few days.  Oh, that I would have the simple, deep joy of this young man living his entire life with CP!  Even with his disability, even in his loneliness, he is choosing to be filled with joy that can't be shaken. Gratitude. Overwhelming gratitude.

I hope you will take the time to watch his story unfold and allow his words reflecting the peace and power of Jesus Christ, to fill your soul with gratitude as well.

So near to God

This is a first for me: I'm not prepping dinner. I'm writing this as my boys help my husband grill a special meal for me in honor of Mothers Day. I've turned up Spotify and am tuning out the minor bickering and choosing to be grateful for the messy-kitchen-spills, a result of their gracious attempts at a fancy meal prepared with love. My children are far from perfect - - which is fine, because so am I!  Yet, I take time today to be thankful for each of their precious lives. Both children born in my prayers and heart long before they entered my life. Both children held so near to God before they were held in my arms.

I'm thankful for each of their unique personalities, about as polar opposite as two brothers could be. I'm thankful for their silliness and laughter and constant chatter. I'm learning to be thankful for burps and body noises because it means they are healthy enough to be rambunctious. I'm thankful for stinky, sweaty socks because it means they played hard and exercised their bodies. I'm thankful for dirty dishes piled up in the sink because it means our bellies are full and content with plenty.

I'm learning to be thankful for disability because it has taught me that I can do nothing on my own, but all things through Christ. I'm thankful for disability because it opened up a new world of friendship with some spectacularly awesome families I would otherwise not have taken interest in. (Shame on me!)

I'm thankful for the wisdom and truth that God gives me on this journey. I'm thankful that every human being - - from the developing babe in the womb with Trisomy 18;  the non-verbal one with autism longing to express themselves; the orphan in Nepal who is frightened;  the beggar under the Portland bridge seeking hope; the one who is wheelchair bound craving legs to run; whether their skin be red, brown, yellow, black or white- - every person created has value in the eyes of God!

Here's a wonderful quote to remind us to dwell on the beauty of that truth:

“If man really is fashioned, more than anything else, in the image of God, then clearly it follows that there is nothing on earth so near to God as a human being. The conclusion is inescapable, that to be in the presence of even the meanest, lowest, most repulsive specimen of humanity of the world is still to be closer to God than when looking up into a starry sky or at a beautiful sunset. Certainly that is why there is nothing in the new testament about beautiful sunsets.- Mike Mason -Author of "The Mystery of Marriage”

Fitness Bands

At Christmas my wonderful husband gifted me with a Garmin fitness band. It's a handy little gadget for tracking daily steps, whether on walks with kids and dog or running household executive duties (indoor cardio, aka, hauling laundry up & down stairs, unloading groceries).  It's also connected me with others so I can be challenged to keep up my efforts and raise my goals.  How did I ever live without it???

This past month I've noticed how incredibly useful and motivating my fitness band has been in keeping me on track with my steps each day. Those annoying inspiring red dots flashing, reminding me I haven't moved enough in the past hour.

As parents caring for loved ones with disabilities, we are constantly on the go: kids that live on minuscule hours of sleep, therapist appointments, allergy appointments, healthy meals to cook, houses to clean, more therapy visits, juggling calendars for the rest of the family.  Whew! Some days we can rack up steps without too much effort.

Have you noticed, as caretakers, we too often place our needs at the bottom of the list? Sometimes, intentionally, as a servant; sometimes, with a tired, woe-is-me if-only-you-knew attitude.  Which ever the reason may be, we need to stop. We need to take a deep breath and just breathe. 

Try it right now. 

Oh, you thought I was just writing, not speaking to you...  At your desk, on your smart phone, wherever you are reading this: inhale slowly through your nostrils, 1-2-3-4-5; exhale, gently push air out of your mouth, 1-2-3-4-5.  BREATHE.  This time (if you're not on an airplane) stand up and raise your arms above your head as you slowly inhale, filling an imaginary balloon in your stomach.  Now push the air out as your arms fall to your side, releasing the tension.  When is the last time you did this?  Really?!? That long ago!

I came to the realization that I needed a spiritual "fitness band" on my wrist too: something that will remind me while my life is constantly on the move physically, I need to "slow down" spiritually; telling me that I needed to stop and pray, or sit and be quiet with Gods Word.

It is imperative as a caretaker that our tanks be refueled on a daily basis.  Our feet should never hit the floor in the morning without recharging our emotional and spiritual tank for the day.  Place a Bible next to your bedside stand so you see it first thing in the morning. Make a good choice with that smart device you own and download a free app such as the YouVersion Bible or Truth For Life devotional.  She Reads Truth is one of my favorite free apps!

Here's sage advice from Joel Belz of World Magazine: "The “mind of Christ” doesn’t get formed in an instant. It comes through lifelong disciplines. That’s why all of us need to be infused frequently—maybe even constantly—with the life-giving discernment of God’s special revelation in the Bible. Better to try to keep up your physical well-being without eating every day than to keep up your powers of godly discernment without daily recourse to God’s very words and instruction for His children. "

I challenge you to get your spiritual fitness band activated with me each morning. I'd love to hear how you are staying activated spiritually.

Steadfast Love

Words filled with hope and promise to get us through each day, moment by moment.

The 12th Man

The 12th man.

If you live on the west coast, particularly the Pacific Northwest region of the United States, an image immediately popped into your head when you read those words: the 12th man.

A certain friend of mine (whose identity shall remain nameless as they mourn loss in Wisconsin) said this weekend, “I’m sick of hearing the hokey 12th man garbage”.  However, if you’re a Seattle Seahawks fan, you know you ARE the 12th man. As the 12th man, YOU are part of the team. 

Follow all the social media posts and hashtags such #12thman, #weare12 or #12manstrong and you'll see its a real phenomena.  Get this: on Instagram alone there were 474,320 posts with the hashtag #12thman.

An article in USA Today quoted the coach as saying, “When you have 12’s behind us like this today, and you have the belief these guys have in one another, there ain’t nothing you can’t do,” Carroll said. “And as crazy as that sounds, they pulled it together. They pulled off a great comeback victory.”

In case you're still unclear about all the 12th man hype, Wikipedia says this, “The 12th man or 12th player is a term for fans of teams playing American football or association football. As most football leagues allow a maximum of eleven players per team on the playing field at a time, referring to a team's fans as the 12th man implies that they have a potentially helpful role in the game. Infrequently, the term has referred to individuals having a notable connection to their football team...”

A few nights ago I lay awake thinking about the 12th man. Raising a child with disabilities requires an incredible amount of endless energy. There isn’t much down time and it often feels like life is throwing endless yellow flags at you. You learn to make the most of every yard you gain.

When emotions run high in your child, joy overflows: there is constant singing, babbling in their own happy language, whistling contended tunes, telling you over & over & over & over how much they love you. Yet emotions can take a quick turnover where it often gets physical: arms start flying, holes appear in walls, clothing gets torn, toys destruct, tears are shed, Legos are broken, dreams are tackled and the wind is knocked clear out of you.

It's when you feel defeated, discouraged and unable to make another move, at that very moment ... the 12th man becomes invaluable.

As a parent, I need my 12th man!  I need to know there is someone out there cheering me on, someone telling me to get up and try again, someone encouraging me to press on for another day.  My child can have tremendous swings in mood and in physical health which means I’m on a direct text line with the school; the 12th man is the one who doesn’t give up on me in spite of my seemingly unpredictableness.

I need a 12th man cheering on my behalf, after having my child screaming for hours. I need a 12th man who dresses up and says “let’s go!”, after spending the day telling my child “please just let it go”. I need a 12th man team who stays for the long haul when my child has just entered the hospital for the 3rd time this month. I need to be 12 man strong when there is yet another IEP battle to wage against a principal who just doesn’t get it, still.

If you’re raising a child with disabilities, who is your 12th man? 

Here’s a few ideas to get your own cheering squad started:

• Reach out to other parents in your child's Lifeskill/ERC class; they need to be 12 man strong just like you!
• Ask your pediatrician if there's a local support group. I’m in a closed Facebook group for other moms in my city who are raising kids with autism.
• Call local churches or Joni & Friends to find a support group.
• Can’t find a local group: ask another mom of an exceptional child to meet you at the park...you’ll be surprised how fast word will spread & others will join you.
• Join a closed or secret Facebook group where you can safely vent to other caregivers who understand your childs unique needs.
• Follow blogs of others who are on this journey with you.  Jolene Philo, who writes Different Dream for my child, has a great link up every Tuesday where you can follow the blogs some exceptional families.
• Special Needs Parenting.net reminds you that you are Not Alone, providing resources from amazing writers who are caregivers too.
• Forward this post so others can learn to be your 12th man.

On the other end of the playing field...are YOU a 12th man?

Here’s how you can be a 12th man for a family raising an exceptional child:

1. Call and just say, hi.
2. Meet them at the park for fresh air & coffee.
3. Offer to watch their child for 1 hour so they can do laundry or nap.
4. Offer to do their laundry.
5. Write a simple note of encouragement.
6. Tell them you are praying for them.
7. Ask how can you pray specifically.
8. Ask how they are doing...then stop to listen without offering advice.
9. Call and just say hi.
10. Invite some or all of their children for a play-date.
11. Take a meal...don’t wait for a crisis. Take a meal tomorrow.
12. Don’t give up on them, remember their life is exceptionally stressful.

Perhaps God had a #12strongteam in mind when writing Hebrews 12:12-13  So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong. (NLT)

I challenge you today: thank your #12strongteam, find a #12thman, BECOME a #weare12 for a family.

A Season of Hope

I’ve had a favorite Christmas ornament for 13 years. This intricately hand painted scene of Salzburg, Austria on fragile blown glass has traveled the hills of Austria, into Germany, across oceans, through TSA gestapo and the rough hands of movers tossing boxes across 3,000 miles of America. It’s hung gracefully on my tree for 13 years in 5 different houses. Each Christmas as I’ve unpacked and repacked it with care, I’ve told my children the adventure and joy it signifies, a reminder of a beautiful trip with my husband exploring the grandeur of a land dear to us. I’ve told them of the market stalls and grand cathedrals, of the castles and music, of the people and friends that are etched in my memory.

This year I kneel on the floor, my hands shaking, my eyes so blurred I can scarcely see the shattered pieces of tiny glass. While tears stream down my face, Boy Wonder sits in the other room sobbing, knowing that this time he went much too far. It is by no means the first lovely sentimental item he has destroyed. Yet this time, I am so filled with sadness and regret I cannot go near him. My frustration of all he has done this week, culminated in anger at the sight of glass scattered under the tree, the result of direct disobedience and impulsiveness on his part. He squeezed the glass until it shattered... compressing my patience right along with the glass.

My emotions too raw, I order him out of the room. I am repulsed by the sight of him: of his increasingly selfish behavior the past months, of his greediness, of his unending want, of his constant focus on himself, of his meltdowns when he doesn’t get his own way. 

He cries now only because he fears a consequence, not out of sorrow for hurting another. As with most people affected by FASD... he just doesn’t get it. He has no comprehension this ornament is irreplaceable. He doesn’t appreciate the value. He doesn’t have compassion for others. Still my hurt, my anger rages deep inside me and overflows from my wicked tongue to pierce him with my words.

As I sit with tears streaming, softly mixing with remnants of glass in my broken pile, waiting to be cast forever into the rubbish heap, the irony of the beautiful tree and the bright crimson embroidered “Peace on Earth” tree skirt suddenly flood my soul.  Sobs rack my body as I see the brokenness it all portrays.

Such is life with disability: the perfect ornament we want the world to see, a shattered family painted inside, a fragile child hanging in the balance. I reach up to gently unhook the rest of the glass still attached to the tree. I find another thin shard of painted glass resting in the evergreen bough. I am overcome with emotion.

Is this not the reason God sent the Messiah to us one Christmas season so long ago: to sweep up the pieces of His beautiful world that man has shattered. To heal wounded, fragile souls. We took His delicate, hand-painted world and slowly compressed the beauty of His creation with the sin in our hearts: our gluttony, our greed, our sexual preferences, our self-sufficiency, our idols. Until one day the glass could no longer withstand the pressure -- sin shattered our souls into hundreds of tiny pieces, the only hope of rescue being a Savior. And in the fulness of time: Jesus, the Messiah, the Son of God come to earth as a son of man.  He came in such a fragile form, creating the very womb that gave him life! It is too much for me to comprehend. This grace extended to me. This reconciliation of man to God via a crimson stained Savior.

I’m still shaken as the day passes. I am saddened by what cannot be replaced. More than grieving the temporary beauty of the ornament, I grieve the loss of the things Boy Wonder does not comprehend: of emotions and empathizes that are foreign to him. Yet the crimson words of "Peace on Earth" ring in my mind and I find solace in the eternal beauty of this season... knowing in the Messiah there is found everlasting hope for the parent, for the child, for the family exhausted by disability. I close my eyes at the end of a long day and rest in the promise of peace on this journey.

My heart kneels as I ask for more grace.

Immanuel has come: God with us.

I Slipped

It was one of those afternoons, Dear Hubby was out of town on business again, (which of course, involves dining & wining others a concept I’ve all but forgotten), as I’m at home learning how to eliminate 54 foods (favorite foods!) from Rock Star's diet. It was raining again still; PMS was on its way. Boy Wonder had completely smashed his glasses in anger at school just a couple hours prior; I had somehow managed to not blow my temper in the car when I saw what was left of his glasses and read the letter from the teacher describing what happened - especially since this was the second time in the past 10 days he’d broken them.

I had maintained my cool; I was inhaling deeply and exhaling a prayer. The ever fragile time-bomb, otherwise known to disability parents as the hours between 4 and 7 pm, slowly ticked away.  As I went to transfer the laundry from the washer to the dryer, I realized Boy Wonder had been suspiciously silent for the past 10 minutes, so I stepped out of the mud room to investigate, which made me remember I should pull some frozen meat out of the garage fridge for dinner tomorrow, but then, out of the corner of my eye, I saw the dog following me to the garage and realized it was time for him to go potty, just then I heard Boy Wonder yell for me from the back patio, so I spun around to head back up the mud room steps when it happened: I slipped.

And I went down in searing, instantaneous pain. It hurt. Everywhere: my shin, my knee, my hip, my elbow, my broken fingernail. How I managed to not leave a blue-streak longer than any Ralphies father had hanging over Lake Michigan, I will never know. It hurt that bad!

The noises continued whirling: the barking of the dog terrorizing the neighbors cat, Boy Wonder asking ‘where are you mom?’, Rock Star wanting homework assistance, my phone dinging, the dryer buzzing.  Still I sat on the floor in the mud room, allowing the tears to fall freely. I was in pain and I did not want to move.   I just wanted someone to come rescue me, someone to tell me to go lie down, someone to bandage me.

When it crosses my mind: “Isn’t this just like the journey of raising a child with disabilities?”

How often I slip as a parent!  I am not perfect and this road is full of twists and turns and slippery slopes. Over-exhaustion causes me to be short-tempered with my spouse. Frustration of always being needed causes me to speak in unnecessarily harsh tones to my children. The pressure of needing to maintain a clean diet depletes much of the joy of cooking. Endless therapy appointments prevent me from having “me” time. Unpredictable and unexpected illnesses cause me to break my rare social dates with friends. And once again, I feel myself tumble down.

Each slip, causes another bruise.
Each fall brings a bit sharper pain than the last slip.
It is often a solitary journey- this life with disability - to slip and find no one there to lend a hand.

Yet on the hard, cold cement floor of the mud-room, nursing my already-turning black & blue bruise, breathing in and out, I hear the gentle voice of God whisper to me through all the noise: “Encourage the exhausted and strengthen the feeble. Say to those with anxious hearts, ‘Take courage, fear not…your God will come’.”  Isaiah 35:3-4

It is in this unexpected slip I am reminded that I MUST schedule quiet time into my calendar. I MUST guard my alone-with-God-morning and treat it more precious than coffee time with a treasured girlfriend. I MUST pencil a technology-free block of time into the start of my week, without fail. I MUSt follow the example of my Jesus who often withdrew from the crowds and went away to pray. For when I neglect this sacred time…I slip.

Soothing words for my aching wound flow from the One who comes alongside me on this journey:

If the Lord had not been my help,
    my soul would soon have lived in the land of silence.When I thought, “My foot slips,”
    your steadfast love, O Lord, held me up.When the cares of my heart are many,
    your consolations cheer my soul.
Psalm 94:17-19 ESV

Through his Eyes

I watch from my window as the snow falls. Last winter, this snow was a normal, weekly occurrence in our lives; this year we are living thousands of miles away, in a land that rarely sees snow, and has now declared a state of emergency (no, literally, they have!) because there is almost 4 inches of snow.  Now the neighborhood kids have gathered in our cul-de-sac, right across from our house, the location of the steepest driveway, now turned sledding hill.

Some of the boys walked by and my son, Snow Boy, like most tween boys, thought it would be fun to throw a snowball --  after all, eating snow & throwing snow are his most favorite winter sports! The other boys threw back. Snow Boy threw again, but managed to splatter ice into one of the younger boys eye. Unintentionally. The neighbor boy cried. Hysterically cried.

Snow Boy threw more at the other kids, even though they said stop. They told him to go away. He laughed and ran right into the midst of them. The little boy went across the street to tell his mom - which, of course, triggered the reaction in Snow Boy that it was now time to flee.

I hear my son yelling "cry baby" and "you liar, you said you'd play".  I go out to calm him, and try to explain to the other boys that when you ask him to play, he is going to play. Continually play. He will not stop just because you say stop; you may be tired, but he is just getting into it.

In the meantime, my Snow Boy continues screaming to the other kids, "you lied! you lied! you said you'd play! you're a cry baby." I firmly tell him while giving him the mommy-evil-eye, "shut your mouth now and walk away”.  I make sure the other boy is ok; the neighbor mom comes out and say's ..."its fine, it happens in the snow, just be careful when you throw snow." She is not upset. The neighbor has no visible evidence of injury on his face.

I take my Snow Boy inside. He has melted into tears. I sit across the table from my son, trying to be patient, trying to help him calm his body, attempting to have a rational discussion, trying to grasp for the words that will make a connection with him. He sits there with eyes red, a blotchy, puffy face swollen from tears mingled with a runny nose, hiccuping as he tries to tell me about it.

What do you do when you realize your kid has been labeled by the other kids as the neighborhood bully?

I talk. He cries.

He talks. I listen.

My words are empty to him. He doesn't get it.  In his mind, this is black & white: “There is snow, I like to throw snow, everyone must like to throw snow. Getting hit in the face with snow doesn't bother me, it must not bother anyone. I have a high pain tolerance; everyone must have a high pain tolerance”.

I try to help him understand that when he sees someone crying, he should stop and ask if they are hurt. I explain that when someone is crying, he should stop and say "I'm sorry it was an accident, are you ok?".  Instead he laughs and throws again, oblivious to their pain.

My heart aches for him.

I see the intense pain in his eyes, as he truly does not understand why the kids are angry at him. He truly doesn't know why they won't play with him. I gently try to be honest and point out to him the difference in his actions and theirs. It’s not making a connection with him.  He just wants to play; he longs for a friend.

This boy. This FASD. This enigma. My soul pleads for answers, for breakthroughs in communication. I want to scream to the world: My son is not mean! My son is not an angry boy! My son is most definitely not a bully!

But all the world can see is the boy who has thrown rocks, the boy who has whacked others with a stick, the boy who has yelled names, the boy who shoves, the boys who throws snowballs, the boy who is different. The neighborhood bully.

They don't see through his eyes.

Through his eyes: he whacked because you all had light-sabers (sticks) and he wanted one too...only his pain tolerance is incredibly high, so getting whacked with a stick is all part of the game if you want to be a Jedi...in his eyes.

Through his eyes: he called you a name because you said something off handed in sarcasm or a joke. He only thinks in black and white, in the present, in his eyes.

Through his eyes: you had the football and it was his job as the defense to do whatever it takes to get the ball to his team....even if that is taking you down. It doesn't matter that this is Nerf football and you are 4 years younger than him.

What I see in his eyes as I sit across the table is a tender-hearted little boy in the body of a tween, who feels alone and ostracized from everyone else. I see a child who doesn't understand why all the kids, of all ages, want to play with his younger sibling, but not with him. I see rejection and confusion.  And I want to shelter and protect.

I sigh again. I plead silently for words to comfort and ease his pain.

I open my arms and hold him on my lap, rocking with him in a warm embrace.  It is enough to help him through this moment. It is enough grace for now. Still, I pray without ceasing that someday others will see through his eyes.

Ordinary.

Ordinary.

Such a simple word.

I really had no grasp of the depth of the meaning until my son arrived in my life: disabilities and all.

Ordinary is a gift.
Ordinary should never be overlooked or taken for granted.

This morning, as we had a few extra rare moments of empty time before heading out to school, my son was tossing his lighted-eye-ball-glow-in-the-dark-glitter-bouncy ball in the air.  I stopped my hurry and puttering of being a mom and said “toss it to me”.

A huge smile came over his face and he tossed me the ball. He squealed with delight as I caught it and tossed it back to him. Joy flooded his face as we continued to toss the ball for 5 minutes. He laughed loudly, freely. He was thrilled I stopped to play toss with him.

Ordinary. There is no such thing when you have a child with disabilities.
One never knows what will happen from one moment to the next.
An ordinary ball. An extra ordinary child. A few moments. It all adds up to a gift.

I’m thankful God gave me this boy to teach me that there is nothing “ordinary” about life.

Joy Comes in the Morning

Deep breath in.  Please God give me wisdom.
Now exhale. Oh God, how do I reach him?
Again. Breathe in deeply, fully. I’m waiting God.
Slowly exhale.

This has been my mantra for the week. Breathe in. Pray. Release the air. Pray.
Each breath has been a cry of my heart to gain insight into my son. This complicated, fragile boy  placed in my care.

I pray, I ask: God, you did place him in my care.  So I assume you trust me. You believe that I can raise him. You believe that I have enough wisdom and love and grace and patience to be his mother.

This week has brought great doubt to every area of my life.

This month has seen grief wash over me like the ocean waves rolling in with the evening tide. Oh the pieces of my heart that have been pulled under with each surge of anger that washes over this Boy Wonder.  I’ve lost count of the times he has yelled in anger “I hate you!”.  The wave that knocked me off my rock was to hear him scream “I hope you burn in hell and I live in heaven and I never see you again!”.  I stopped in speechlessness and physically took a step back.

There has been a storm front looming over the horizon each day the past few weeks. Short bursts of anger. Name calling. Disrespectful comments.

Little by little gathering momentum, until unleashing in full fury upon our household in one fell swoop. Red faced. Sobbing. Hysterical high pitched screams. Ear piercing screams. Screams that cause the puppy and little brother to cower in the corner. Anger, frustration, terror.

I am emotionally exhausted. I am physically tired. I am spiritually drained. I go to my room and kneel to pray. I cry out in my mind, for I know that the sound of my voice could not be heard over the deafening screams coming from down the hall.

I cry in fear. I cry in desperation. I cry because it is all I know to do.

I am fairly certain there is an unseen battle taking place in my home: Satan is waging war for the soul of my son. An all out forces of evil attacking his young spirit, causing him to say irrational things.  Things in my heart of hearts, I know he doesn’t mean. Things I know he will regret by nightfall. But words that pierce, words that hold consequence.

Thus, the battle wages down the hall in an adjacent bedroom….and in my mind as well.

How can God create this precious young boy with the incapability of understanding consequences…and expect us to raise him in a society that expects consequences?

I am not at peace.

My faith is being shaken, yet I am determined to search Scripture, to wrestle with God until I resolve this.

Two hours later, an exhausted, blotchy faced boy with swollen red eyes, lies listless in his bed, looking defeatedly into my eyes. With tears he whispered, “its’ not fair…Jesus lives in brothers heart but he won’t live in mine. I can’t hear his voice like you do.”

Oh God! He is listening to the theology we teach him. In his own way, he is not turning a deaf ear.

I held his trembling hand in mine and gently told him, “Oh sweetie, Jesus will live in your heart any time you want him to. But you have to ask him. You must be the one to tell him you are truly sorry for your sin. You must be the one to confess your sin, to tell God that you believe that He sent His only Son Jesus to die on the cross for you. I cannot ask for you.  And I promise, when you do ask, God promises that He will never ever leave you. You will hear his voice. You will not always do good, but you will be able to try.”

This is not the first time we’ve had similar conversations. Boy Wonder has always said he doesn’t want to talk to Jesus. He doesn’t want to pray. He doesn’t want to confess his sin.  So I’ve never pressed the matter.  I have no doubt in my mind that I could have easily convinced him to say a prayer and be “saved” many years ago.  But I’ve waited, wanting for it to truly come from his heart and not from copying me or brother.

Tonight, he did. Simple, mumbling & muttering, humbly he said “Jesus I am sorry. Please live in me.”

Salvation.

Oh God, let it be so! Let tonight be the beginning of a new path for this boy.

Will his FASD, his ADHD, his ASD be cured in the morning? No. In my wildest dreams I could only dare to hope for such a miracle.

What I do long for…what I hope and pray is that from this moment on the Holy Spirit will have the upper hand and will guide my boy. That the power of the Holy Spirit will be so great that Satan will now flee. That the demons that have plagued my son will be gone.

Weeping may endure for the night, but joy comes in the morning.

A Mothers Prayer

Raising a child with disabilities can be so draining.  Can I just say those words to you who are on this journey with me...because I know you get it! You know I'm not complaining. You know that tired feeling when its only 9 am and you've already changed soiled sheets AND soiled clothes, had 3 melt-downs and spilt breakfast on the floor.

It was on one of "those" days that I flung myself into my worn red-leather rocker and open my Bible to Psalm 119 with a sigh and heavy heart.  I love when God pours water into my parched soul, flooding me with the relief I so deperately long for.  As I read these verses, they resonated so deeply in me as hope for my son filled my heart...

Psalm 119: 73-80 became my prayer:

Your hands have made me and fashioned me; give me understanding that I may learn your commandments.
Oh God, I pray that my son will know that God made him.... made him exactly like he is - disabilities and all!

Those who fear You shall see me and rejoice, because I have hoped in your word.
I pray that others would see God reflected in my son's life. That this boy would hope in God. Not in a cure. Not in therapy. Not in medication alone.  

I know O Lord that your rules are righteous and that in faithfulness you have afflicted me.
I pray that even when life is hard and consequences seem to overwhelm him.... when he feels like life is unfair and that he always has restrictions...even then that my son would know that God is fair.
That he would know that God has allowed this affliction - this horrible disability...and although I don't understand why, that this boy will trust that God is righteous and faithful!

Let your steadfast love comfort me according to your promise to your servant.
God, comfort my son! On all the long days when he is lonely, be his friend. On stressful days when he is confused, be his wisdom. On ordinary days when he is tempted in his innocence and ignorance, be his compass, be his conscious.  In moments of discouragement and frustration, be his steadfast love.

Let your mercy come to me that I may live; for your law is my delight.
Give my son mercy. Give him grace and strength for each new day! Let him look to You, God. Help me to help him hide Your word in his heart, that You would be his delight. In a confusing materialistic world, be his desire.

Let the insolent be put to shame because they have wronged me with falsehood; as for me, I will meditate on your precepts.
This is my prayer: that those who shun my child, those who prey on his ignorance and his innocence be put to shame.  Let those who tease him be punished.  Allow Your words to penetrate his mind so that he will meditate on Your truth.  May Your precepts give him courage.

Let those who fear you turn to me, that they may know your testimonies.
Most of all God, I pray that You will be glorified in his life. Let others see Grace & Hope when they see what this little boy has overcome.

May my heart be blameless in your statues, that I may not be put to shame
Keep this boy pure in heart and ever child like in his faith. Give my boy confidence in You that he may never feel ashamed.

Most of all, I pray that I,  as his parent --in my confusion, in my misunderstanding of his disability - would ever cause his heart to harden.   May I be faithful to follow your statues as I raise him. 

Climbing Mt. Everest

 Sometimes life presents situations which seem insurmountable.  To a person with disabilities, even small molehills can become as daunting as climbing Mt. Everest.
Do you have a Mt. Everest in your life?
Is there a challenge surrounding the disabilities of someone you love that make it seem almost impossible to overcome?

Today I write to brag a little about an energetic teen boy I am honored to know. A boy who loves football. A boy who loves to laugh. A boy who loves his siblings. A boy, almost 16. A boy who was born with Down Syndrome.  

This teenager is amazing in so many unique ways, but today...today he accomplished what many healthy, average people will never do (myself included!).  Today this boy reached Mt. Everest Base Camp! 

Yes, THE Mt. Everest. In Nepal. Covered in snow.
Yes! Eli, a boy with Down Syndrome. 

Why this incredible, heartwarming story isn't on the front page of every newspaper and every morning talk show, I don't know.  They are all missing the greatest gem of a story!

In this world of shootings & looting's and gloom & doom, it sure seems like a little dose of positive, upbeat, encouraging news would be an AMAZING headline for any talk show.  Trekking all the way to Mt. Everest Base Camp is a phenomenal feat for a boy with Down Syndrome!

Still the story gets even better: Eli made this trek to raise money for The Elisha Foundation (TEF) to reach out to more families with disabilities.  You can read more about Trek4Tef and The Elisha Foundation by clicking these links and going to their websites. (BTW, it's not too late for anyone to make a donation.)

TEF has personally blessed my family by hosting a Respite Care weekend which included 1:1 care for my son, fun activities for siblings, time alone for me and my hubby, and times of encouragement with other families who are raising children with disabilities, lodging and meals.  If you are reading this blog because you are a caretaker of a dear person with disabilities, then I need not even explain how utterly priceless a weekend like this can be!

TEF has a desire to hold retreats such as this across the country. TEF desires to show that those with disabilities have been created in the image of God, just as those without. If you want to learn more about TEF and the family behind it, please read their blogs, follow them on facebook, twitter or instagram.

Eli trekking to Mt. Everest Base Camp challenges me to never give up on dreaming for my child in spite of his disabilities. I hope his story encourages you too!

The Fingerprints of God

We had another one of those days: days when frustration and anger fill my child with rage at a disability he doesn’t understand.
Another day when he screams at me, “why do I have to have this disability?”.

The words quickly swell in my head… because a woman chose to drink while she was pregnant…because sin is rampant in this world…because we are living in a world that is not heaven.
But he’s too young for any of those logical, truthful answers.
My heart grieves for him. I don’t always understand the Fetal Alcohol either.

I know at this moment what he’s longing for is comfort for solace, for acceptance, for love.
So I hold him. I rock him close.
I cry with him and tell him I am so, so sorry.
I tell him I am on his team and we will fight through this unknown together.
And I whisper to him words from a song I love….

“Never has there been and never again
Will there be another you
Fashioned by God's hand
And perfectly planned
To be just who you are
And what He's been creating
Since the first beat of your heart
Is a living breathing priceless work of art and...

Just look at you
You're a wonder in the making
Oh, and God's not through, no
In fact, He's just getting started and…

I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece
That all creation quietly applauds
And you're covered with the fingerprints of God”

Thank you Steven Curtis Chapman for penning the words to Fingerprints of God from your heart so many years ago. My son finds solace through this music and for that, I am ever grateful.

Facing Our Fears

I am a good mother. I know I am. I may not be perfect, but I am a lioness where my cubs are concerned.

I can control what food goes into my shopping cart and therefore, what food goes into my childs body.

I can decide to which friends house I allow them go for play-dates, thus controlling what they are exposed to.

I choose whether or not to wake them early on a Sunday morning for church, thus I control whether or not they are influenced for good or evil.

I can choose whether to turn on or off the tv, the Wii and the iPod: thereby I control what type of media influences they are bombarded with.

I can choose whether or not to spend money at the movie theatre, so I control what their minds are exposed to at any given age.

I can choose to allow them to sleep in or to wake them a few minutes earlier to give us time to open Gods word at breakfast and learn without hurry together.

I choose school options of public, private or homeschool, and I can control what kind of education my children are given.

What I can’t control is their future.  

As a parent of a child with disabilities… that can be a very frightening thought.

After all, I am his advocate, his lifeline, the one who “gets him” without him having to explain, the one who is often able to predict how he is going to act/behave in a situation.

Which only leads to another terrifying thought:  What will happen to him if something happens to me?

Although I have walked in a relationship with Jesus Christ the past 30 years, my faith is tested in new ways each morning I awake to parent this amazing boy with needs so different that mine.  And so it is there, in those quiet hours before dawn as I pour out my fears and read Psalm 139 that God speaks to me in a gentle whisper:  “I created this baby boy. I took care of this precious little one in a womb where he was not wanted. I carried him safely from a sterile hospital to a cold, dark, dirty orphanage. I had my angels surrounding him for two years before I placed him in your care. Do not think for one moment that I will ever leave him. I will never forsake him. I will continue to provide for him whether or not you can.”

And with those words so eloquently penned by the Psalmist, the fears that attempt to strangle me are pushed back into the dark caverns from which they came and I am able to face another day of raising this special child.

Psalm 139… Good News Translation (GNT)

You created every part of me;
    you put me together in my mother's womb.
I praise you because you are to be feared;
    all you do is strange and wonderful.
    I know it with all my heart.
When my bones were being formed,
    carefully put together in my mother's womb,
when I was growing there in secret,
    you knew that I was there—
      you saw me before I was born.
The days allotted to me
    had all been recorded in your book,
    before any of them ever began.

When Life Isn't as Planned

As a young girl I had grandiose dreams of being a mom, raising a house full of children, and making a home into a castle for the man of my dreams. Somewhere along the way those plans morphed to include having a big house set at the foot of the mountains with lots of open sky for boys, ponies for girls, free range chickens and home grown veggies. I saw trees and fields streching for miles with space for orphaned children seeking hope to grow wild and free within the love of a family. God planted the seeds of adoption in my heart and nurtured them gently long before I realized I would need them. 

Of course my dreams were a little fuzzy. I eventually married my prince who turned out to be a farm boy and I learned that ponies don't just roam...they need care and grooming, that chickens are stinky and messy, and that veggies only grow with hours of sweat from the tired farmer.

And most disillusioning of all, our castle remained empty. Inspite of intense prayers and deepest longings, in the quest for expensive doctors and treatments those yearnings were left unanswered. Reality seemed a far cry from dreams of younger days. 

"For I know the plans I have for you”—this is the Lord’s declaration—“plans for your welfare, not for disaster, to give you a future and a hope."

I have never had children born of my womb, but I have two precious boys born in my heart, born in the seeds God planted years and years ago. As I told some friends recently, they may not be mine biologically, but they are mine eternally.

I do live at the foot of majestic mountains under the bluest sky God ever created.   The path He set me on was not the plan of my choosing, it's required many a detour from the dreams of my youth. Raising a child with disabilities has been one of the most challenging tasks God ever assigned to me.

If I could take away my sons disability, I would. Absolutely, with no hesitation, I would.

Yet, the blessings, the lessons, the joy that has come to me because of his disabilities are ones I would otherwise be without.  It's not the life I planned. It's not what I expected or longed for all those years... but I rejoice in the gift of this child...in the future and the hope that is in Christ.

I recently came across this poem which so beautifully describes my life. (I take the liberty of sharing it and would gladly link to the authors blog if anyone has information.)

WELCOME TO HOLLAND

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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...”