Thursday, March 26, 2015

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.

Saturday, March 7, 2015

Monday, January 19, 2015

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’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 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.

Tuesday, December 30, 2014

PTSD: What do they truly remember?

My precious Boy Wonder was adopted when he was still a toddler. He was developmentally delayed and did not speak, neither English nor his native tongue. Over the past 8 years as we've dealt with many "irrational" fears, "annoying" behavior and downright frustrating moments, my husband and I have talked and wondered about what really happened to him in his orphanage. How much does he remember? What did they allow to happen to him physically and emotionally? Obviously, something happened.  Does he have PTSD? If so, it's never been diagnosed.

Our agency told us he was young and wouldn't remember his early years. Books told us to love him enough and he'd grow out of it being raised in our forever home. I've lost count of how many professionals we've seen, how many psychiatrists and psychologists have probed and prodded every nook and cranny of our life. We don't have answers. We may never have answers. But we don't want to give up hope.

A wise friend of mine wrote an incredible blog about PTSD and children.  I'm not going to attempt to elaborate or summarize it. I'm going to link you to her post: it is a MUST read. You can find wonderful resources on her blog Different Dream for my child

I discovered Key Ministry - which is an awesome resource for parents raising kids with special abilities - at the Accessibility Summit.  Key Ministry knows the value of Jolene's experience and she wrote this guest article on PTSD for their blog entitled: He Won't Remember: Children and PTSD. 

As 2014 draws to a close, I pray you will be encouraged to know that there are "Jolenes" and "Key Ministrys" out there to help you on your journey. You are not alone.

Take hope!

Friday, December 19, 2014

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.

Saturday, August 30, 2014

Red Shoes Rock

There's a small movement occurring across the world right now.... and I’m not referring to the Ice Bucket Challenge.  This grass roots movement is called Red Shoes Rock. The idea is to wear red shoes from now until September 9th (Fetal Alcohol Spectrum Disorders Awareness Day) and every time someone comments on the red shoes, the wearer educates another person about FASD.  (As if I need another reason to buy me some new Red Shoes!)

Today my shoes took me to a place of grace, flowing with hope and source of peace.

God surely knows that on this FASD journey I need grace. Boy Wonder also requires grace on a daily basis. Living on the Spectrum can cause him to be THE. MOST. ANNOYING. CHILD. EVER!!  In our house we have run the gamut of annoying OCD habits.  Lest you think I exaggerate, here are just a few:
Whistling that would put even the Seven Dwarfs to shame.
Humming incessantly as long as he’s awake.
Biting nails like they were his Last Supper.
Picking skin until it is scarred and bleeding (we should've bought Band-Aid stock!).
Sucking fingers as if they were slathered in sugar.
Right now however, its clapping. Non-stop clapping. Eating and clapping. Walking and clapping. Reading and clapping. Playing and clapping. Clapping. Clapping! CLAPPING!! So yes, in case you wonder, grace is needed in my home.

Here’s the catch: The more irritated I am at his annoying traits, the more grace he needs...yet the longer the annoying habits manifest themselves in my presence, the less likely I am to give the grace.

Still the real irony is found in the fact that the less I am to give him grace, the more likely I am to lie in bed at the end of the day and ask God to give me grace.

And once again, I find that my child with disabilities truly has the ability to teach me oh so many lessons which I need to learn. God has pointed out many of my short comings through his young atypical life.

So when Sunday morning rolls around and I slip beautiful Red Shoes on my feet, they are walking me into a place I need to be. My soul is parched and desiring Living Water. I need the sweet grace of the Holy Spirit to fill me with cool, refreshing water of life that I may overflow into my family.

Where will your Red Shoes take you?

Thursday, March 20, 2014

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