Tuesday, September 22, 2015

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!

Monday, September 7, 2015

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.

Monday, May 11, 2015

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

Monday, April 20, 2015


Welcome to a new week! I don't know about you, but my soul was wonderfully refreshed yesterday as I spent time with God and took a day of rest with my family.  I have no doubt that God had our spiritual, emotional and physical bodies in mind when He incorporated a "Sabbath" rest for us.

It's Monday: back to school, groceries, laundry and helping people achieve personal goals in their lives. We're also under a thunderstorm and flash flood watch, so I've got a double batch of muffins in the oven right now, waiting to be eaten during that afternoon crazy hour when our bodies need refueling & rehydration. Now that I've nourished my soul, here's a fantastic way to nourish the body. 

Gluten Free, Dairy Free, Refined Sugar Free Banana Muffins in minutes.

You'll want to make these right now.  Best news: they are healthy and they are quick! 30 minutes and you'll have them prepped, baked and cleaned up. No kidding.  I think I based my recipe on this one I found on Pinterest. but I've been making them for so many years, I'm not sure. Enjoy it nonetheless!

Banana Muffins:
  • 1 medium/large ripe banana, peeled   (FYI, ripe bananas are soft and brown & very high glycemic. Green bananas are lower in sugar, but don't give the liquid to the recipe)
  • 1 large egg
  • 1/2 cup creamy GF peanut butter or sunbutter (DO NOT use almond butter!)
  • 3 Tbls agave 
  • 1/2 to 1 tablespoon vanilla extract
  • 1/4 teaspoon baking soda
  • 1/4 teaspoon cinnamon
  • 1/8 teaspoon salt
  • 1/2 cup mini Enjoy Life chocolate chips (gf, df, nut free)


Preheat oven to 375 standard or 350 convection

Grab your Demarle silicone mini muffin pans.  Or, prepare mini muffin pans by spraying very, very well with cooking spray; set aside.

Grab a blender: Vitamin, Blendtec, Magic Bullet...whatever spins your world.

Add to blender in this order:  agave, egg, vanilla, banana, peanut/sun butter, cinnamon & baking soda, then blend on high speed until smooth and creamy, NO MORE than 1 minute. Seriously. You'll heat up the butter and your chips will melt into a gooey mess. Just sayin.

Add heaping 1/2 cup Enjoy Life chips and stir in by hand; don't use the blender because it will pulverize or melt them.

Using a small Pampered Chef scoop, drop 2 scoops into mini muffin pans. Each muffin should be filled to no more than 3/4 full (any fuller & the muffins will not rise properly).


Sprinkle each muffin with a generous pinch of chocolate chips. Just because I love chocolate.

For best results, bake at 350 convection for 9 minutes
Or, bake at 375 for 10-12 minutes

Do not over bake. Muffins will rise greatly in oven & fall as they cool on counter. Do not panic. They will taste fantastic!!!

Allow muffins to cool in pans for about 10 to 15 minutes.

Makes 12-14 mini-muffins. They will be eaten before you can pack them away.

I make these ALL THE TIME. I always double the recipe because these muffins freeze fantastically and hold up perfect in school lunches.  Here's a few more options I've tried during the zillion times I've baked them...

Add 1/3 cup unsweetened natural cocoa powder and 1 Tbls more of agave
Add mint chips instead of chocolate chips.
Add 1/2 tsp of bakers coffee spice blend

To make them sugar free completely:
These are good, but aren't as fabulous as the above recipe.
  • 1 cup + 1 Tbsp almond butter
  • 1 egg
  • 1 banana
  • 3 tbsp coconut milk
  • 3 Tbsp stevia powder
  • 3 Tbsp cocoa powder
  • 2 Tbsp cocoa nibs
  • 3/4 tsp baking powder

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 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.