Oh! Those emotions.

I'm continuing to lay stones of remembrance each step of this new journey.  I want wildflowers to grow in unexpected places. I want to learn to praise him when dark trials come and fill my heart with fear.

Excerpts from my journals this past week:

August 21, 2017

Starting a new week with a new song in my heart:

When the morning falls on the farthest hill
I will sing His name, I will praise Him, still
When dark trials come and my heart is filled
With the weight of doubt, I will praise Him, still

For the Lord, our God, He is strong to save
From the arms of death, from the deepest grave,
And He gave us life in His perfect will,
And by His good grace, i will praise Him still.
(credit Fernando Ortega)

August 22, 2017

Today was really exhausting. I'm just being honest, stopping my Bio-HRT is making this journey so hard. While Rock Star is mostly stepping up and helping out, Boy Wonder is falling apart. Each is coping in his own way right now. And I get it. It's not easy to grasp. And my emotions are taking a dive. You DO NOT want to be in our house right now.

Menopausal mom with Rock Star and Boy Wonder both hitting those teen hormones.  Today, I feel more like throwing a stone of remembrance, not laying one down.



August 27, 2017

At church this morning Ben Fleming talked about "Doxology" in the Psalms.  I'm paraphrasing what he said but it comes down to this:
"Doxology isn't based on my life circumstance or situation, but on God and who He always is."

Stop for a moment and let that sink in.

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.

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”

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.

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

A Matter of Perspective

Three days ago I logged on to my MacJournal and wrote an entry about celebrating the 10 years of my Boy Wonders life. Reminiscing and laughing over all the precious moments we’ve shared with him.

Little did I know just a few short hours after writing that entry, I would be in a clinic listening to a doctor attempting to diagnosis my sons allergic reaction, telling myself to breathe calmly without panic, all the while mentally praying, begging God to spare Boy Wonders life. Nor did I realize that I would spend half of the next day, and the following, back at the clinic while my boy was being given an IV and heavy doses of antibiotics to aggressively combat the infection raging through his lymph nodes. All because of this little plant.

Oh how life changes so quickly.

Here I am 2 days later, biting my tongue, ready to send him to the woodshed and give him a smack on his rump, while he is screaming at the top of his lungs, melting down. He’s angry because something didn’t go his way; he’s frustrated he can’t get his air rocket out of a 75 foot tall pine tree. When I approach him while calling his name, he looks at me and blatantly ignores me as he angrily throws rocks at the street and treehouse. When I ask him to come in and calm down on the step, he stomps and screams and rips the ace-bandages and sling from his arm. When I ask him to move outside to the back porch step until he is calm, he rages and kicks all the patio furniture and rips his clothing. When I attempt to talk to him he screams at me in frustration.

Oh how life changes so quickly.

He’s on the back patio screaming; I’m in the kitchen fuming and talking to God… “Seriously God, I was begging and pleading with You just days ago to save this childs life. I went 3 nights with no sleep, constantly monitoring his breathing and temperature. For this?!? Really!?!“  A few other conversations raced through my mind while I was attempting to make a decent dinner for our family, get my husband ready to leave town, pay attention to lil brother…and now drop everything to deal with the hysteria of Boy Wonder who lost his toy rocket. Big sigh. Big complaints going through my head. Big sacrifices I make for this child. I don’t deserve this.

Then a still small voice from God whispered to me, “Wait a minute, dear girl, you're looking at this all wrong. Instead of rationalizing that three days ago you were begging for his life and now you're angry at him for throwing your plans out of sync again, you need to change your thoughts and have a new perspective.  You should be thinking, “I blessed you. I saved your sons life. Why are you pulling your hair out over this? I saved his life because I need you to guide him in the days ahead.  I need you to think eternally. This two hour long meltdown is just a small scene on the landscape canvas I’m painting of your son’s life. This too shall pass. Put your boots on: you're going in. This is a moment of grace and sacrificial love you are able to give to Boy Wonder. Don’t miss it.”

Oh how life changes so quickly.

I went to bed praying for a bigger perspective, for more grace, for deeper love, for a thankful heart to count my blessings while I have them.

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.