tag:blogger.com,1999:blog-7378657454067750542024-03-14T05:43:15.721-04:00Snowflakes and SeashellsRaising a fearfully and wonderfully created person with invisible disabilities of FASD.Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.comBlogger56125tag:blogger.com,1999:blog-737865745406775054.post-84153341719071602792019-02-01T17:37:00.000-05:002019-02-01T17:37:11.808-05:00Winning The Heart of Your Child<br />
This blog has been silent for over a year. Sometimes writing helps process life. Sometimes life can't be processed in words. I do know that cancer changed the trajectory of my life forever. Just as disability did before cancer. Just as adoption did before disability. Just as infertility did before adoption. Life happens in the blink of an eye.<br />
<br />
In the blink of an eye, Boy Wonder entered high school and Rockstar Kid became a teen. At 5, I was their world. They wouldn't dream of heading into school at morning drop off without a hug, a kiss, a verbal "I love you mom". Now as teens, they barely acknowledge I'm in the car. And it would be their worst nightmare if drop off included a hug or a kiss on the cheek.<br />
<br />
What happened to my little boys? I blinked and they are tweens, growing into teens, heading for manhood. Hormones have taken over their bodies...I often wonder, do I still have their hearts?<br />
<br />
Over the years, I've read so many parenting books: books on discipline, books on scheduling, books on emotions, books for neuro-typical kids, books for children with trauma, books for a child on the spectrum, books for strong-willed boys. Every book had its niche, and I could glean one or two things from each book, but needed to toss the rest of the chapters because it didn't fit my child. Then puberty hit and, wow!, did I feel hopeless and confused with parenting. What do I read for the strong-willed, hyperactive, hormone-engulfed, I-love-you-just-kidding-I-hate-you-emotionally-charged, adventurous, I-want-independence, I-need-you, phase of my boys life?<br />
<br />
Big sigh. Lots of prayers. Lots of do-overs. Enter Mike & Kristen Berry. Cue the music. Carve out a moment of your day because <u>Winning The Heart of Your Child</u> is going to be released February 5, 2019, and I was given a pre-release copy to read and review.<br />
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<br />
Pour yourself a drink, find a quiet spot, and dig into this book. <br />
Whatever season of life you are in...childhood, tween, teen...this book is one you'll turn to over and over. It's practical. It's straightforward. It's honest.<br />
<br />
Whether your child is typical or on the spectrum, biological or adopted, boy or girl, you will find encouragement and wisdom from an author who's been there/done that. This is practical, smart parenting.<br />
<br />
The first portion of the book is about The Great Misunderstanding in parenting. For me, this provided real insight into why my reactions and my approaches haven't worked. And boy did it hit home!<br />
<br />
The second portion of the book is Parenting for the Win, with 9 keys to building a lifelong relationship with my kids. Nine ways you can begin or continue to connect with your kids or teens. Let's just say that I underlined so many points in these chapters, you're going to want to get the book!<br />
<br />
The final portion of the book is Moving Forward. It's where you get practical and daily. It's the part I'll need to write about later, because, honestly, I'm still moving forward. My little boys are growing young men. They don't need me, but they desperately need me. They don't want to talk, but they want me to listen. They don't want me involved, but they want to know I care. <br />
<br />
My biggest critique of the book....Key 5: stay involved with your child..." be ready to set aside what you are doing when your children want to talk". Whaaaa! but I just want to keep reading this chapter of this book. I'm supposed to put what I read into action, so I take a deep breath and close the book and make eye contact and I listen. <br />
<br />
Now it's your turn. <br />
Go to this website to grab your own copy of the book: <a href="http://www.winningtheheartbook.com/">http://www.winningtheheartbook.com/</a><br />
If you pre-order from the website before Feb 5 you will receive :<br />
Access to Exclusive Winning The Heart Book VIP Facebook Group <br />
A Special 3-Part Video Series on Understanding Your Influence<br />
A Downloadable PDF Library Of Extra Content<br />
An Entire Library Of Colorful Images for Your Phone, Tablet, or Computer<br />
A Special 3-Part Audio Series on Parenting On Purpose<br />
A 16-Week Facebook Video Study Series<br />
<br />
<br />
(*Here's where I need to disclose that I did receive a complimentary copy of this book, in exchange for writing a review. The opinions about the book are 100% my own. I also do NOT receive any compensation when you click on the links and/or purchase a book. I'm recommending it because I actually really like the book.)<br />
<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-80544023905709164932017-09-10T18:27:00.001-04:002017-09-10T18:27:48.795-04:00Even If...<div class="separator" style="clear: both; text-align: center;">
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<br />
As I process having cancer and the gamut of emotions I've experienced in the last month, it's made me even more aware of how Boy Wonder processes life. <br />
<br />
Cancer is a scary word. It makes one stop and reflect on the brevity of life: every breath is a gift, every moment a memory. There is much hope in a good doctor, in medical technologies, in advanced medication. My doctor is confident that within 6 months to a year, my life will return to normal.<br />
<br />
Not so for Boy Wonder.<br />
FASD is permanent.<br />
There is no good doctor. There is no medical technology to assist him. There is no advanced medication to heal him. <a href="http://snowflakesandseashells.blogspot.com/2011/09/fasd-awareness-day.html" target="_blank">FASD</a> is life long. FASD is his normal. <br />
<br />
FASD is an invisible disability. Invisible to the world... but not to him. Not to us. We clearly see his struggles every day. Every single day of his life he wakes up to face so many hurdles, including <a href="http://www.sensory-processing-disorder.com/" target="_blank">proprioceptive dysfunction and tactile dysfunction</a>.<br />
<br />
Every day his senses are assaulted by aromas of the cafeteria colliding with the smells of lotions & bodies in the hallways; his ears ring with the vibrations of pencils scratching on paper and the cacophony of voices blending with the slamming of lockers; his skin receptors yearn to feel the pressure of a friendly hug or high five, yet he's prohibited from touching other students lest he trigger a harassment charge from a politically correct public school system. It takes him minutes and hours to process questions and expectations, but in a world that runs on instant gratification it is impossible for him to keep up. <br />
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<br />
He lives for days at the ocean where the salty air calms his mind and his constant whistling bothers no one as its carried away on the ocean winds. He longs to be buried in a cocoon of sand, slathered from head to toe, every inch of his skin blissfully covered with the tiny granuals of warm sand. At home, his fight or flight reflexes never rest; he is always on edge, jumpy and easily frightened. On the sprawling expanse of the coastline there are wide open spaces to run and roll, to squeal and whistle, to let his fear and anxiety roll out with the tide. <br />
<br />
So as I prepare for surgery to take me on a journey of healing, my heart goes out to this amazing kid of mine who will most likely never find complete healing in this life. He is the true warrior. I am learning from him. <br />
<br />
Even If (by <a href="http://mercyme.org/" target="_blank">Mercy Me</a>)<br />
<br />
They say it only takes a little faith<br />
To move a mountain<br />
Good thing<br />
A little faith is all I have right now<br />
But God, when You choose<br />
To leave mountains unmovable<br />
Give me the strength to be able to sing<br />
It is well with my soul<br />
<br />
I know You're able and I know You can<br />
Save through the fire with Your mighty hand<br />
But even if You don't<br />
My hope is You alone<br />
I know the sorrow, and I know the hurt<br />
Would all go away if You'd just say the word<br />
But even if You don't<br />
My hope is You alone<br />
<br />
You've been faithful, You've been good<br />
All of my days<br />
Jesus, I will cling to You<br />
Come what may<br />
‘Cause I know You're able<br />
I know You can<br />
<br />
<br />
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<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com3tag:blogger.com,1999:blog-737865745406775054.post-77766788695499794022017-09-08T20:51:00.000-04:002017-09-08T20:51:03.681-04:00Unshaken HopeContinuing to share some excerpts from my journals over the past few weeks. Learning to look for more stones of remembrance along the way.<br />
<br />
<br />
<b>August 28th</b><br />
<br />
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. <br />
<br />
<br />
<b>August 30th</b><br />
<br />
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.<br />
<br />
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"<br />
<br />
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. <br />
<br />
<br />
<b>September 1, 2017</b><br />
<br />
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.<br />
<br />
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. <br />
<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-49236711841664831402017-09-06T14:33:00.001-04:002017-09-06T14:33:58.958-04:00Oh! 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.<br />
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<i></i><br />
<i><br /></i>
<i>Excerpts from my journals this past week:</i><br />
<br />
<b>August 21, 2017</b><br />
<br />
Starting a new week with a new song in my heart:<br />
<br />
When the morning falls on the farthest hill<br />
I will sing His name, I will praise Him, still<br />
When dark trials come and my heart is filled<br />
With the weight of doubt, I will praise Him, still<br />
<br />
For the Lord, our God, He is strong to save<br />
From the arms of death, from the deepest grave,<br />
And He gave us life in His perfect will,<br />
And by His good grace, i will praise Him still.<br />
(<i>credit <a href="http://www.songlyrics.com/fernando-ortega/i-will-praise-him-still-lyrics/" target="_blank">Fernando Ortega</a></i>)<br />
<br />
<b>August 22, 2017</b><br />
<br />
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.<br />
<br />
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.<br />
<br />
<br />
<br />
<b>August 27, 2017</b><br />
<br />
<a href="http://westsidechurch.org/westside-tv/doxology/" target="_blank">At church this morning </a>Ben Fleming talked about "<a href="http://www.biblestudytools.com/dictionary/doxology/" target="_blank">Doxology</a>" in the Psalms. I'm paraphrasing what he said but it comes down to this:<br />
"Doxology isn't based on my life circumstance or situation, but on God and who He always is."<br />
<br />
Stop for a moment and let that sink in.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-46543104938625358852017-09-05T13:27:00.001-04:002017-09-05T13:27:25.389-04:00Desperation can cause you to SingMany years ago I read a book by Chuck Swindoll entitled "<a href="https://smile.amazon.com/Stones-Remembrance-Charles-R-Swindoll/dp/0849984025/ref=sr_1_5?s=books&ie=UTF8&qid=1504138946&sr=1-5&keywords=stones+of+remembrance" target="_blank">Stones of Remembrance</a>", which discusses and meditates on
the significance of building "stones of remembrance" to recall what God
has done in our lives. On this new journey, I began journaling so I could see and remember what God is doing.<br />
<br />
<i>Excerpts from my journal this month:</i><br />
<br />
<b>August 15, 2017</b><br />
<br />
I've been reading a book entitled "<a href="https://smile.amazon.com/23rd-Psalm-21st-Century/dp/188102282X/ref=sr_1_fkmr0_4?ie=UTF8&qid=1504138828&sr=8-4-fkmr0&keywords=The+23rd+Psalm+for+the+21st+Century%2C+a+Jewish+shepherds+story" target="_blank">The 23rd Psalm for the 21st Century, a Jewish shepherds story</a>" by <a href="https://www.mcleanbible.org/who-we-are/lon-solomon" target="_blank">Lon Solomon</a>. I love so much about this book! God is reminding me that this is just another valley. <br />
"God
has seen every crisis and is aware of every need we will ever have -
and he has already been through the mesas of our life making provision
for them all." <br />
<br />
And it reminds me of a <a href="http://stevegreenministries.org/?s=hidden+valley" target="_blank">Steve Green song</a>:<br />
<br />
Hidden valleys produce a life song<br />
Hidden valleys will make a heart strong<br />
Desperation can cause you to sing<br />
Hidden valleys turn shepherds to kings.<br />
<br />
<br />
<b>August 17, 2017</b><br />
<br />
<br />
Psalm 23:5 "You prepare a table before me in the presence of my enemies."<br />
<br />
Cried
and cried but seeing the fingerprints of God again. Today, God, as
my shepherd went before me and prepared an open appointment at 8 am this
morning. God prepared a table for me in the tunnel of an MRI. He
quieted my should with calm and truth (and a xanax). <br />
<br />
<br />
<br />
<b>August 19, 2017</b><br />
<br />
Continuing to lay stones of remembrance as I marvel that God goes before me as my shepherd. <br />
Holding my child in my arms as he cries uncontrollably over the unknown things in his mamas diagnosis. <i>God is their shepherd too</i>.
I need to trust that God also has my boys in his care. That his plan
and purposes were established before they were mine and will remain long
after I am gone.<br />
<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-3455245294851324502017-08-30T20:43:00.001-04:002017-09-05T13:24:08.541-04:00When fear wants to take over<i>Excerpts from my journal this past month:</i><br />
<br />
<b>August 8, 2017</b><br />
<br />
There is much fear and anxiety flooding my emotions. It's been years and years and years since I've felt so attacked by fear
and anxiety. Years since I've needed medication to calm my anxious spirit. Mind-encompassing, breath-stealing, cold sweat, heart
pounding anxiety. I feel so weak and unable to handle this so I began
writing in my journal, positive truths that remind me that the power is
not in me but in my Creator. The words of this song fill my mind:<br />
<br />
My life is in your hands,<br />
Oh, Lord I want it to be there<br />
My hopes, my dreams and all my plans<br />
I trust entirely to your care<br />
<br />
My life is in your hands<br />
What better place for it to be<br />
The one who sees beyond today<br />
Must know whats best for you & me.<br />
(<i>credit <a href="http://www.chuckgirard.com/bio.html" target="_blank">Chuck Giard</a></i><a href="http://www.chuckgirard.com/bio.html" target="_blank">)</a><br />
<br />
<br />
<b>August 9, 2017</b><br />
<br />
I had to take a xanax to sleep last night, but I woke this morning with these words ringing my head:<br />
<br />
God is too wise to mistaken<br />
God is too good to be unkind<br />
So when you don't understand<br />
When you don't see His plan<br />
When you can't trace His hand<br />
Trust His heart.<br />
(<i>credit <a href="http://www.babbie.com/index.php?id=3" target="_blank">Babbie Mason</a></i>)<br />
<br />
<b>August 12, 2017</b><br />
<br />
Overwhelmed with so many anxious thoughts, trying to breathe deep and not let fear reign. Another song came to mind:<br />
<br />
The steadfast love of the Lord never ceases<br />
His mercies never come to an end<br />
They are new every morning<br />
New every morning<br />
Great is Thy faithfulness O Lord<br />
Great is Thy faithfulness.<br />
<br />
<b>August 14, 2017</b><br />
<br />
As it sinks in that this really, truly does look like cancer, the fear gnaws at my mind. <br />
<br />
It's my children that bring me to tears:<br />
Will my children believe God is good when I tell them I have cancer?<br />
Will they run to a heavenly Father when they've already lost a biological mother?<br />
How much fear will envelope their already fragile, traumatized hearts?<br />
How can I be strong for them when I feel so weak? <br />
<br />
God, be real to them.<br />
Love them.<br />
Surround them.Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-76386217161994501202017-08-30T17:23:00.002-04:002017-08-30T17:26:20.609-04:00A New Path<div class="separator" style="clear: both; text-align: center;">
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<br />
This summer finds me floating through a new door. Not one of my choosing, but one that opened and pulls me through.<br />
<br />
Grab a cup of coffee and I’ll fill you in: <br />
<br />
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”. <br />
<br />
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. <br />
<br />
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.)<br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
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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.<br />
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Part 2<br />
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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? <br />
Ummm. Blank stare. <br />
Momentary silence. <br />
Yeah, probably a million of them, but I have no idea where to begin because this isn’t really happening to me, is it?<br />
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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?”. <br />
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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.<br />
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Part 3<br />
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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.<br />
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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.<br />
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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.<br />
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I left the MRI, and headed for genetic testing to see if I carry the BRCA 1 or 2 gene.<br />
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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.<br />
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Part 4<br />
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August 24th I open this door with deep breathes, with clouded eyes and silent prayers.<br />
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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.<br />
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These are days of testing and waiting.<br />
Waiting in itself has become a test.<br />
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. <br />
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I am on the other side of the door. Walk with me.Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com10tag:blogger.com,1999:blog-737865745406775054.post-55290429959027487052016-12-07T12:45:00.000-05:002016-12-07T12:45:51.089-05:00What if December Looked Different This Year?<br />
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This Christmas our family is learning to give, and, well, I’m a bit embarrassed to confess, it's not as easy as I thought it would be. I’m a little more OCD than I'd like to admit, I’m a bit more impatience than I thought I was, and I actually <i>like</i> all my worldly American comforts. <br />
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You see, this Christmas, my husband and I decided we are not giving each other gifts, and our kids are each getting 1 gift and 1 adventure date coupon. Instead, we are opening our home to a teenager who is an Eastern European orphan, “N” (<i>her name and location are being withheld for privacy & safety reasons</i>). We are partnering with <a href="http://www.projectonefortythree.org/" target="_blank">Project 143</a> to give orphans hope. <br />
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In the past we've gone to other parts of the world, this time we are bringing the world to us. We've come to recognize even though our hearts stir us to go into all the world and share the good news of Jesus, our family dynamic is such that we just can't. We already have a child who has a disability requiring adult supervision at <i>all</i> times. Taking him into places with unfamiliar smells, where he is on sensory overload, and can't find a quiet room full of Legos, is too much for him (<i>and me!</i>).<br />
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Here’s the thing: my excited, motherly heart tells me to splurge on N this Christmas. I want there to be stacks of presents for her under the tree; I want to take N on a shopping spree at Nordstrom; I want to give her a Pottery Barn bedroom; I want to have a day away at <a href="http://www.spa-w.com/" target="_blank">Spa W</a> being pampered from head to toe; I want her to spend a day wandering <a href="http://www.powells.com/" target="_blank">Powell's Books</a> and buying everything that takes her fancy; I want her to go to school to have friends; I want to teach her to ski, to bike, to ride a horse, and I want her to put her toes in the ocean. <br />
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Then I stop myself and remember…all she really needs for Christmas is a family. <br />
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What she really needs is hugs every morning, prayers every night, grace throughout the day, boundaries and unconditional love. To know she is loved, and she is accepted. To know the Messiah came 2016 years ago and she can receive the free gift of salvation through Jesus Christ who loves her. So we are going to do our best to meet those needs from Dec 20th to Jan 15th, and plant seeds of hope we know will continue throughout her life. <br />
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This song by <a href="http://matthewwest.com/" target="_blank">Matthew West </a>truly expresses what we hope to do this year: Give This Christmas Away.<br />
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<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com1tag:blogger.com,1999:blog-737865745406775054.post-57360312142277728002016-03-11T15:56:00.001-05:002016-03-11T15:56:27.964-05:00Hope that does not Disappoint<div style="color: #454545; line-height: normal;">
<span style="font-family: inherit;"><span style="font-family: inherit;">Often,</span> 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. <span style="font-family: inherit;">If I'm not careful, that <span style="font-family: inherit;">discouragement</span></span></span><span style="font-family: inherit;"><span style="font-family: inherit;"> so quickly crawls in<span style="font-family: inherit;">to <span style="font-family: inherit;">the crevices of my mind <span style="font-family: inherit;">and I must remember that I am learning to li<span style="font-family: inherit;">ve a different dream for my child. </span></span></span></span></span></span><br />
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<span style="font-family: inherit;"><span style="font-family: inherit;">T</span>here<span style="font-family: inherit;"> is</span> 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. <span style="font-family: inherit;"><span style="font-family: inherit;"> </span></span>I want my home to be one where Christopher Robin would love to live: full of anticipation, adventure, laughter, and hope.</span></div>
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<span style="font-family: inherit;">Hope, in my mind, is a key word for parents, for caretakers and for children living with developmental delays. Actually, <i>especially</i> for children with special needs. </span><br />
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<span style="font-family: inherit;">Hope. Not as in I <span style="color: #232323; line-height: normal;">want something to happen or be the case, <i> </i><span style="font-family: inherit;">not <span style="font-family: inherit;">referring to the lucky feeling</span> when we hope to win the lottery<span style="font-family: inherit;">, nor focused on the wanting when</span> we hope to get a bike for Christmas.</span></span></span><br />
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<span style="font-family: inherit;">I’m referring to lasting hope. <i><b> </b></i></span><br />
<span style="font-family: inherit;"><i><b>Hope that does not disappoint</b></i>. </span><br />
<span style="font-family: inherit;">Hope that is bigger and deeper and surer than any diagnosis. </span><br />
<span style="font-family: inherit;">Hope that looks beyond the <span style="font-family: inherit;">possibilities</span> of cures and medications. </span><br />
<span style="font-family: inherit;">Hope<span style="font-family: inherit;">,</span> the desire of some good with the expectation of obtaining it. </span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;">This is my hope that does not disappoint</span>: Christ my Savior, with the promise of heaven to come.</span></div>
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<span style="font-family: inherit;">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 <span style="font-family: inherit;">in-spite</span> 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.</span></div>
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<span style="font-family: inherit;">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>I <span style="font-family: inherit;">know</span></i> 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.</span></div>
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Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com2tag:blogger.com,1999:blog-737865745406775054.post-16834876147100295022015-09-22T16:07:00.001-04:002015-09-22T16:07:04.688-04:00To Just be the Parent<div class="separator" style="clear: both; text-align: center;">
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<br />
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. <br />
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I wrote from a heart that had been hurting and famished for seven years, ".<a href="http://snowflakesandseashells.blogspot.com/search/label/church" target="_blank">.....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?</a>" <br />
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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.<br />
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<br />
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.<br />
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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!!!<br />
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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.<br />
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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.<br />
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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. <b><i> Never, EVER, have we been encouraged and welcomed, and asked to just be his parent.</i></b><br />
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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.<br />
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Three years ago I wrote: "... <a href="http://snowflakesandseashells.blogspot.com/search/label/church" target="_blank">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</a>." I'm filled with gratitude that that prayer was answered for our family! <br />
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And for others, I want to share hope that there exists ministries such as <a href="http://theelishafoundation.com/" target="_blank">The Elisha Foundation</a> and <a href="http://www.joniandfriends.org/help-and-resources/" target="_blank">Joni & Friends</a>, 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.<br />
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For those of you who can't make it to church due to exhaustion and overwhelming needs of a dependent, <a href="http://www.keyministry.org/front-door-online-church/" target="_blank">Key Ministry</a> has some incredible resources for online church. Visit their website <a href="https://drgrcevich.wordpress.com/online-church-in-disability-ministry/" target="_blank">Church 4 Every Child</a> to learn about Front Door church and online services from Community Bible Church.<br />
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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!<br />
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<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-27539023861979606732015-09-07T12:39:00.002-04:002015-09-07T14:45:58.137-04:00Longing and GratitudeSince the day I first watched this brief <a href="http://austinstone.org/stories" target="_blank">video</a> 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.<br />
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My child does not live with CP, however, I would dare to say my Boy Wonder, who has <a href="http://www.nofas.org/about-fasd/" target="_blank">FASD</a> & Autism, experiences so many of the same feelings as <a href="https://twitter.com/flournoy3" target="_blank">Roger Flournoy, Jr.</a> when he stated: <br />
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"<i>I want to be everybody's friends and that hurts me because I can't help the fact that I have CP</i>". <br />
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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.<br />
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You may not realize that CP and Down-syndrome are <span style="color: purple;"><b><i>visible disabilities</i></b></span> that often cause people to shy away because they don't know how to respond to the <b><i><span style="color: purple;">physical differences</span> </i></b>they see in someone.<br />
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While Fetal Alcohol Spectrum Disorders and Autism/Aspbergers are <span style="color: purple;"><b><i>invisible disabilities</i></b></span> that often cause people to shy away because they don't know how to respond to the <span style="color: purple;"><i><b>emotional differences</b></i></span> they see in someone.<br />
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All of these often lead to the same core feelings for our kids: loneliness.<br />
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“<i>The hardest thing is loneliness. I am my own greatest enemy when I am left to my loneliness.”</i> Roger<br />
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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. <br />
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Spoiler alert: the wisest words on this 4 minute video are these, "<i>Jesus paid the ultimate price and if I don’t totally worship him it’s like I don’t appreciate him dying for me</i>." Roger Flournoy Jr<br />
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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.<br />
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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.<br />
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<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/ud09NeaJzvg" width="480"></iframe>Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com1tag:blogger.com,1999:blog-737865745406775054.post-90197398381263085742015-05-11T12:46:00.002-04:002015-05-11T12:46:42.999-04:00So near to God<div class="separator" style="clear: both; text-align: center;">
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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.<br />
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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.<br />
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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. (<i>Shame on me!</i>)<br />
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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 <a href="http://www.trisomy18.org/what-is-trisomy-18/" target="_blank">Trisomy 18</a>; the non-verbal one with <a href="http://www.autismshiddenblessings.com/" target="_blank">autism</a> longing to express themselves; the orphan in Nepal who is frightened; the beggar under the Portland bridge seeking hope; the one who is <a href="http://www.joniandfriends.org/" target="_blank">wheelchair bound</a> craving legs to run; whether their skin be red, brown, yellow, black or white- - <b><i>every person created has value in the eyes of God</i></b>!<br />
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Here's a wonderful quote to remind us to dwell on the beauty of that truth: <br />
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“<i>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</i>.- <a href="http://mikemasonbooks.com/blog/" target="_blank">Mike Mason -Author of "The Mystery of Marriage</a>”Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-14222660520269710522015-04-20T21:31:00.000-04:002015-04-20T21:39:57.640-04:00NourishWelcome 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.<br />
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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. <br />
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<br />
<span style="color: blue;">Gluten Free, Dairy Free, Refined Sugar Free Banana Muffins in minutes.</span><br />
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You'll want to make these right now. <i><b>Best news: they are healthy and they are quick!</b></i> 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 <a href="http://www.averiecooks.com/2013/10/flourless-peanut-butter-chocolate-chip-mini-blender-muffins.html" target="_blank">on Pinterest. </a>but I've been making them for so many years, I'm not sure. Enjoy it nonetheless!<br />
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<span style="color: blue;"><b>Banana Muffins</b>:</span><br />
<ul>
<li>1 medium/large ripe banana, peeled (<i>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</i>) </li>
</ul>
<ul>
<li>1 large egg</li>
<li>1/2 cup creamy GF peanut butter or sunbutter (DO NOT use almond butter!)</li>
<li>3 Tbls agave </li>
<li>1/2 to 1 tablespoon vanilla extract</li>
<li>1/4 teaspoon baking soda</li>
<li>1/4 teaspoon cinnamon</li>
<li>1/8 teaspoon salt</li>
<li>1/2 cup mini Enjoy Life chocolate chips (gf, df, nut free)</li>
</ul>
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DIRECTIONS:<br />
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Preheat oven to 375 standard or 350 convection<br />
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Grab your Demarle silicone mini muffin pans. Or, prepare mini muffin pans by spraying very, very well with cooking spray; set aside.<br />
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Grab a blender: Vitamin, Blendtec, Magic Bullet...whatever spins your world.<br />
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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.<br />
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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.<br />
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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 (<i>any fuller & the muffins will not rise properly</i>). <br />
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Sprinkle each muffin with a generous pinch of chocolate chips. Just because I love chocolate.<br />
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For best results, bake at 350 convection for 9 minutes<br />
Or, bake at 375 for 10-12 minutes<br />
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Do not over bake. Muffins will rise greatly in oven & fall as they cool on counter. Do not panic. They will taste fantastic!!!<br />
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Allow muffins to cool in pans for about 10 to 15 minutes.<br />
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Makes 12-14 mini-muffins. They will be eaten before you can pack them away.<br />
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<i><b>I make these ALL THE TIME</b>.</i> 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...<br />
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<b>Variations</b>:<br />
Add 1/3 cup unsweetened natural cocoa powder and 1 Tbls more of agave<br />
Add mint chips instead of chocolate chips. <br />
Add 1/2 tsp of bakers coffee spice blend <br />
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<b>To make them sugar free completely</b>:<br />
These are good, but aren't as fabulous as the above recipe. <br />
<ul>
<li>1 cup + 1 Tbsp almond butter </li>
<li>1 egg</li>
<li>1 banana</li>
<li>3 tbsp coconut milk</li>
<li>3 Tbsp stevia powder</li>
<li>3 Tbsp cocoa powder</li>
<li>2 Tbsp cocoa nibs</li>
<li>3/4 tsp baking powder</li>
</ul>
<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com2tag:blogger.com,1999:blog-737865745406775054.post-81271941384580562932015-03-26T14:29:00.003-04:002015-03-26T14:29:49.944-04:00Fitness Bands<br />
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 (<i>indoor cardio, aka, hauling laundry up & down stairs, unloading groceries</i>). 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???<br />
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<br />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 <strike>annoying</strike> inspiring red dots flashing, reminding me I haven't moved enough in the past hour. <br /><br />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.<br /><br />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. <br />
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Try it right now. <br />
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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!<br /><br />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.<br /><br />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 <a href="https://www.youversion.com/" target="_blank">Bible</a> or <a href="https://www.truthforlife.org/" target="_blank">Truth For Life </a>devotional. <a href="http://shereadstruth.com/" target="_blank">She Reads Truth</a> is one of my favorite free apps!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1QrHQL3v1T7G6zRsmJAPC8ouWeXjWG8uG4gmKiSaX7mBGVAy_k9shEfKAAgLEm1waw-Jnr0oUGh1XHKbX0HjrX-HcZUdBZ87MoK2gahHE_OwtFUjSy93W-Yjwa7LQ3_kCDk2yubhm9zKZ/s1600/biblestudy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1QrHQL3v1T7G6zRsmJAPC8ouWeXjWG8uG4gmKiSaX7mBGVAy_k9shEfKAAgLEm1waw-Jnr0oUGh1XHKbX0HjrX-HcZUdBZ87MoK2gahHE_OwtFUjSy93W-Yjwa7LQ3_kCDk2yubhm9zKZ/s1600/biblestudy.jpg" height="320" width="320" /></a></div>
<br />Here's sage advice from <a href="http://www.worldmag.com/writer/joel_belz/" target="_blank">Joel Belz</a> of <a href="http://www.worldmag.com/2015/03/first_thing_in_the_morning" target="_blank">World Magazine</a>: "<i>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>"<br /><br />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.<br />
<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com1tag:blogger.com,1999:blog-737865745406775054.post-63965647789124372222015-03-07T20:44:00.000-05:002015-03-07T20:44:35.359-05:00Steadfast LoveWords filled with hope and promise to get us through each day, moment by moment.<br />
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<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-89284632571808057942015-01-19T21:27:00.000-05:002015-01-19T21:31:25.378-05:00The 12th ManThe 12th man.<br />
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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.<br />
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A certain friend of mine (<i>whose identity shall remain nameless as they mourn loss in Wisconsin</i>) said this weekend, “I’m sick of hearing the hokey 12th man garbage”. However, if you’re a Seattle <a href="http://www.seahawks.com/12th-Man/index.html" target="_blank">Seahawks fan</a>, you know you <i><b>ARE</b></i> the 12th man. As the 12th man, <i><b>YOU</b></i> are part of the team. <br />
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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. <br />
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An <a href="http://ftw.usatoday.com/2015/01/seattle-seahawks-green-bay-packers-12th-man" target="_blank">article</a> in USA Today quoted the coach as saying, “<i>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</i>.”<br />
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In case you're still unclear about all the 12th man hype, <a href="http://en.wikipedia.org/wiki/12th_man_%28football%29" target="_blank">Wikipedia</a> says this, “<i>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.</i>..”<br />
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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. <br />
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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. <br />
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It's when you feel defeated, discouraged and unable to make another move, at that very moment ... the 12th man becomes invaluable. <br />
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<i><b>As a parent, I need my 12th man!</b></i> 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. <br />
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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 “<i>please</i> 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.<br />
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If you’re raising a child with disabilities, <b><i>who is your 12th man</i></b>? <br />
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Here’s a few ideas to get your own cheering squad started:<br />
<ul>
<li>Reach out to other parents in your child's Lifeskill/ERC class; they need to be 12 man strong just like you!</li>
<li>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.</li>
<li>Call local churches or <a href="http://www.joniandfriends.org/" target="_blank">Joni & Friends</a> to find a support group.</li>
<li>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.</li>
<li>Join a closed or secret Facebook group where you can safely vent to other caregivers who understand your childs unique needs.</li>
<li>Follow blogs of others who are on this journey with you. Jolene Philo, who writes <a href="http://www.differentdream.com/" target="_blank">Different Dream for my child</a>, has a <a href="http://www.differentdream.com/2015/01/dream-team-link-share-43/" target="_blank">great link up </a>every Tuesday where you can follow the blogs some exceptional families. </li>
<li><a href="http://specialneedsparenting.net/" target="_blank">Special Needs Parenting</a>.net reminds you that you are Not Alone, providing resources from amazing writers who are caregivers too.</li>
<li>Forward this post so others can learn to be your 12th man. </li>
</ul>
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On the other end of the playing field...<b><i>are YOU a 12th man</i></b>?<br />
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Here’s how you can be a 12th man for a family raising an exceptional child:<br />
<ol>
<li>Call and just say, hi.</li>
<li>Meet them at the park for fresh air & coffee.</li>
<li>Offer to watch their child for 1 hour so they can do laundry or nap.</li>
<li>Offer to do their laundry.</li>
<li>Write a simple note of encouragement.</li>
<li>Tell them you are praying for them.</li>
<li>Ask how can you pray specifically.</li>
<li>Ask how they are doing...then stop to listen without offering advice.</li>
<li>Call and just say hi.</li>
<li>Invite some or all of their children for a play-date.</li>
<li>Take a meal...don’t wait for a crisis. Take a meal tomorrow.</li>
<li>Don’t give up on them, remember their life is exceptionally stressful.</li>
</ol>
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Perhaps God had a #12strongteam in mind when writing Hebrews 12:12-13 <span style="color: purple;"><i>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></span><br />
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<i><b>I challenge you today</b></i>: thank your #12strongteam, find a #12thman, <i><b>BECOME</b></i> a #weare12 for a family.Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com4tag:blogger.com,1999:blog-737865745406775054.post-83784956039763682252014-12-30T20:29:00.001-05:002014-12-30T20:40:50.534-05:00PTSD: 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, <b><i>something</i></b> happened. Does he have PTSD? If so, it's never been diagnosed. <br />
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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.<br />
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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 <a href="http://www.differentdream.com/" target="_blank">Different Dream for my child</a>. <br />
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I discovered <a href="http://www.keyministry.org/" target="_blank">Key Ministry</a> - 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 <i><b>guest article on PTSD</b></i> for their blog entitled: <span style="color: red;"><span style="background-color: yellow;"><a href="https://drgrcevich.wordpress.com/2014/10/26/he-wont-remember-children-and-ptsd-jolene-philo/" target="_blank">He Won't Remember: Children and PTSD.</a> </span> </span><br />
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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.<br />
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Take hope!<br />
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<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com2tag:blogger.com,1999:blog-737865745406775054.post-47632337319318536192014-12-19T22:13:00.001-05:002014-12-27T16:49:45.918-05:00A Season of Hope<br />
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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.<br />
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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. <br />
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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. <br />
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He cries now only because he fears a consequence, not out of sorrow for hurting another. As with most people affected by <a href="http://www.nofas.org/" target="_blank">FASD</a>... 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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 "<a href="https://www.biblegateway.com/passage/?search=Luke+2&version=ESV" target="_blank">Peace on Earth</a>" 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.<br />
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My heart kneels as I ask for more grace. <br />
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Immanuel has come: God with us. <br />
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<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com2tag:blogger.com,1999:blog-737865745406775054.post-65395202808693018732014-08-30T16:22:00.000-04:002014-08-30T16:22:29.679-04:00Red Shoes Rock<div class="separator" style="clear: both; text-align: center;">
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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 <a href="https://www.facebook.com/pages/Red-Shoes-Rock-Stop-FASD/347081428776982" target="_blank">Red Shoes Rock</a>. The idea is to wear red shoes from now until September 9th (<a href="http://www.nofas.org/fasd-day-sept-9-2014/" target="_blank">Fetal Alcohol Spectrum Disorders Awareness Day</a>) and every time someone comments on the red shoes, the wearer educates another person about FASD. (<i>As if I need another reason to buy me some new Red Shoes!</i>)<br />
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Today my shoes took me to a place of grace, flowing with hope and source of peace. <br /><br />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:<br />
Whistling that would put even the Seven Dwarfs to shame.<br />
Humming incessantly as long as he’s awake.<br />
Biting nails like they were his Last Supper.<br />
Picking skin until it is scarred and bleeding (<i>we should've bought Band-Aid stock!</i>).<br />
Sucking fingers as if they were slathered in sugar. <br />
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.<br /><br />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. <br /><br />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 <i>ask God to give me grace</i>. <br /><br />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.<br /><br />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.<br /><br /><i>Where will your Red Shoes take you</i>?Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-74347492558563596752014-03-20T20:53:00.001-04:002014-03-20T20:53:35.670-04:00I Slipped<div class="separator" style="clear: both; text-align: center;">
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It was one of those afternoons, Dear Hubby was out of town on business again, (which of course, involves dining & wining others <i>a concept I’ve all but forgotten</i>), as I’m at home learning how to eliminate 54 foods (favorite foods!) from Rock Star's diet. It was raining <strike>again</strike> 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. <br />
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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.<br />
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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! <br />
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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. <br />
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When it crosses my mind: “<i>Isn’t this just like the journey of raising a child with disabilities</i>?” <br />
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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.<br />
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Each slip, causes another bruise. <br />
Each fall brings a bit sharper pain than the last slip.<br />
It is often a solitary journey- this life with disability - to slip and find no one there to lend a hand.<br />
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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<br />
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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. <br />
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Soothing words for my aching wound flow from the One who comes alongside me on this journey:<br />
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<i><span style="color: #674ea7;">If the Lord had not been my help,<br /> my soul would soon have lived in the land of silence.When I thought, “My foot slips,”<br /> your steadfast love, O Lord, held me up.When the cares of my heart are many,<br /> your consolations cheer my soul</span>.</i><br />
Psalm 94:17-19 ESV<br />
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<br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-71421746159091492232014-02-24T11:48:00.002-05:002014-02-24T11:48:44.791-05:00Through his Eyes<div class="separator" style="clear: both; text-align: center;">
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<i>What do you do when you realize your kid has been labeled by the other kids as the neighborhood bully?</i><br />
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I talk. He cries.<br />
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He talks. I listen.<br />
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My words are empty to him. He doesn't get it. In his mind, this is black & white: “<i>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>”.<br />
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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.<br />
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My heart aches for him.<br />
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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.<br />
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This boy. <a href="http://www.papillioncenter.org/fasd/" target="_blank"><i>This FASD</i></a>. This enigma. My soul pleads for answers, for breakthroughs in communication. I want to scream to the world: <i>My son is not mean</i>! <i>My son is not an angry boy</i>! <i><b>My son is most definitely not a bully</b></i>!<br />
<br />
<i>But all the world can see i</i>s 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.<br />
<br />
<span style="color: #38761d;"><b><i>They don't see through his eyes.</i></b></span><br />
<br />
<i><span style="color: #6aa84f;">Through his eyes</span>:</i> 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...<span style="color: #38761d;"><i>in his eyes.</i></span><br />
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<span style="color: #6aa84f;"><i>Through his eyes</i></span>: 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,<span style="color: #38761d;"><i> in his eyes</i></span>.<br />
<br />
<span style="color: #38761d;"><i>Through his eyes</i></span>: 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.<br />
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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.<br />
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I sigh again. I plead silently for words to comfort and ease his pain.<br />
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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.Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-91851236205326826302013-10-11T11:55:00.001-04:002013-10-11T11:55:26.667-04:00Ordinary.<i><b>Ordinary</b></i>.<br /><br />Such a simple word.<br />
<br />I really had no grasp of the depth of the meaning until my son arrived in my life: disabilities and all.<br /><br /><i>Ordinary</i> is a gift.<br />
Ordinary should never be overlooked or taken for granted.<br /><br />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”.<br /><br />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.<br /><br />Ordinary. There is no such thing when you have a child with disabilities.<br />
One never knows what will happen from one moment to the next.<br />An ordinary ball. An extra ordinary child. A few moments. It all adds up to a gift.<br /><br />I’m thankful God gave me this boy to teach me that there is nothing “<i>ordinary</i>” about life.Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com2tag:blogger.com,1999:blog-737865745406775054.post-3864474690031411792013-09-25T22:25:00.001-04:002013-09-25T22:25:14.806-04:00What I KnowI write not because I have the cure or the answers.<br />
I write because it is all <b>I know</b>.<br />
<br />
<b>I know</b> my son does not understand his <a href="http://livingwithfasd.com/#" target="_blank">FASD</a>. And what he does understand he does not like. <br />He is frustrated with himself and with the crazy stimuli of this world constantly bombarding him. <br /><br />Why him?<br />And <i>why me for his mother</i>? Who am I?<br />
I am not wealthy: I cannot pour money into a cause like Donald Trump, <a href="http://www.u2.com/index/home" target="_blank">Bono</a> or Jenny McCarthy.<br />
I do not have the clout of Oprah.<br />
Nor the knowledge of <a href="http://www.fascets.org/" target="_blank">Diane Malbin</a>. <br /><br />I am me. <br />Middle class, average mom. <br />Unorganized.<br />
Easily distracted. <br />Anxious. <br /><br /><i>I <b>know</b></i> that God did not want his birthmother to drink and <b>I know</b> God did not want my son to have <a href="http://www.nofas.org/" target="_blank">FASD</a>…yet, <b>I know</b> that God chose to place this specific child, with his specific disabilities, into my family, as <b><i>my</i></b> son, so that I could learn patience.<br />
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So I would come to rely on God. <br />
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So I would take up the mantle of an <a href="http://www.healthline.com/health/alcohol-related-neurologic-disease" target="_blank">Alcohol Related Neurological Disorder</a>... that I would become passionate for a cause that I would otherwise view as an inconvenience and interruption… that I could educate those in my world of the life-long, incurable - -yet 100% preventable - - disability of <a href="http://www.nofas.org/" target="_blank">FASD</a>.<br />
<br />
This <b>I know. </b><br />
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<br />
Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-4996371978354166992013-06-11T18:03:00.000-04:002013-06-11T18:03:52.163-04:00A Matter of PerspectiveThree 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.<br />
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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.<br />
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<br /><i>Oh how life changes so quickly. </i><br /><br />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.<br /><br /><i>Oh how life changes so quickly. </i><br /><br />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 <i>this</i> childs life. I went 3 nights with no sleep, constantly monitoring his breathing and temperature. <i>For this?!? </i>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.<br /><br />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 <i>this</i>? 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.” <br /><br /><i>Oh how life changes so quickly. </i><br /><br />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.<br /><br />Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com0tag:blogger.com,1999:blog-737865745406775054.post-80867352148718420292013-05-23T01:07:00.002-04:002013-05-23T01:07:22.201-04:00Joy Comes in the MorningDeep breath in. <i>Please God give me wisdom. </i><br />
Now exhale. <i>Oh God, how do I reach him? </i><br />
Again. Breathe in deeply, fully. <i>I’m waiting God. </i><br />
Slowly exhale.<br />
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This has been my mantra for the week. Breathe in. Pray. Release the air. Pray.<br />
Each breath has been a cry of my heart to gain insight into my son. This complicated, fragile boy placed in my care.<br />
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I pray, I ask: <i>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. </i><br />
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This week has brought great doubt to every area of my life.<br />
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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>I hate you!</i>”. The wave that knocked me off my rock was to hear him scream “<i>I hope you burn in hell and I live in heaven and I never see you again!</i>”. I stopped in speechlessness and physically took a step back. <br />
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There has been a storm front looming over the horizon each day the past few weeks. Short bursts of anger. Name calling. Disrespectful comments.<br />
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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.<br />
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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.<br />
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I cry in fear. I cry in desperation. I cry because it is all I know to do.<br />
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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. <br />
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Thus, the battle wages down the hall in an adjacent bedroom….and in my mind as well. <br />
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<i>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><br />
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I am not at peace.<br />
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My faith is being shaken, yet I am determined to search Scripture, to wrestle with God until I resolve this.<br />
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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, “i<i>ts’ not fair…Jesus lives in brothers heart but he won’t live in mine. I can’t hear his voice like you do</i>.”<br />
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Oh God! He is listening to the theology we teach him. In his own way, he is not turning a deaf ear.<br />
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I held his trembling hand in mine and gently told him, “<i>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.</i>”<br />
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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 “<a href="http://peacewithgod.jesus.net/" target="_blank">saved</a>” many years ago. But I’ve waited, wanting for it to truly come from his heart and not from copying me or brother.<br />
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Tonight, he did. Simple, mumbling & muttering, humbly he said “<i>Jesus I am sorry. Please live in me.</i>”<br />
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<a href="http://www.billygraham.org/spiritualgrowth_topics.asp?tid=16" target="_blank"><b>Salvation</b></a>. <br />
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Oh God, let it be so! Let tonight be the beginning of a new path for this boy.<br />
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Will his <a href="http://www.cdc.gov/ncbddd/fasd/facts.html" target="_blank">FASD</a>, his ADHD, his <a href="http://www.autism-society.org/about-autism/" target="_blank">ASD</a> be cured in the morning? No. In my wildest dreams I could only dare to hope for such a miracle. <br />
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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. <br />
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Weeping may endure for the night, but joy comes in the morning.Anonymoushttp://www.blogger.com/profile/05574462798171643041noreply@blogger.com2