Living Dreams in Fleeting Moments

What did you dream for your unborn children?

Most people think about gender, hair/eye color,  the nursery...

They may pray the baby they carry is healthy.

What did you do of when your child safely entered the world?

Most get a beautiful healthy child on delivery

Marvel at the perfection of the gift before them.  

They cry tears of joy

And share their wonderful news.  

Then they move on dreaming typical dreams

Play dates, dance lessons, t-ball practice, schools...

Their children grow and develop as typical children do.

What if...

...your child is born with a severe heart defect?

...your child is born with Trisomy 18?

...your child is born anacephaly?

Grief envelops your heart

Dreams evaporate

Prayers change

A new reality forms

You learn to live in the moment

Because the next might not come

Every moment is the dream

Making it last as long as it can

Imprinting precious memories

Of fleeting life and love

On your heart

To carry with you to eternity

Where hope lives

Hope and Healing

Some suffer much

Fresh tragedy

Love gone

Lost and alone

 

Awash with tears

  

Wretched pain

 

Constricts the heart

 
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 Some suffer long

Some by choice

Nurturing their wounds

Living in the past

Refusing to let go

Of days of old


Deeply scarred
 

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Hope hidden

Hope forgotten
 
Haunted by grief 

 

Heart turned to stone

Lost in bitterness
 
Impervious to Love

The soul withers
 

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 A distant knock

A fluttering of the heart

Slight movement of the soul

Touched by Word or Spirit

Aware or  not

Of the Father waiting


To enter in
 

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Then a whisper

An inkling of hope

Light floods the darkness

Hope and healing enter in

Worked by the Holy Spirit

Sight restored, Truth revealed

The soul transformed


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A child of God emerges

 Healed and whole

Knowing his heritage

Is not of this life

But found in Eternity

Heart Overflowing

Basking in Grace 
 

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Ransomed, redeemed

Cleansed by the blood of the Lamb

Walking in the Light

Where fear cannot live

The past irrelevant

In communion with the Father

Consumed by Love

He Waits - Encouragement in Sorrow

This I know as truth

As well as I know adversity

I know the road less traveled

Is never traveled alone

Even in my most solitary moments

I know He waits

I feel His presence

I know His healing touch

He waits with great longing

For me

Me - His beloved

With my big sorrows and little sorrows

He waits...

With love enough to heal

Just as He waits for you

With deep longing

He calls you by name

A still, small voice

Come to me, my child

I am the source of all

Which is called Love

I came

To take away all  sorrow

To dry your tears

To envelop you in comfort

Heal you in union

With me

Filling the place of sorrow

With love

And a promise that what is lost

Will be found again

In a reunion in Heaven

Heart Work

As I sat with other moms who have children with special needs last night, I pondered how our lives were different from those raising typically developing children.  Specifically, about the extraordinary heart work that burdens us at times.

They ponder difficult questions -  questions that most parents do not have to entertain for our children of significant intellectual disabilities.

Our children: 

Most likely will never live alone.

Most won’t drive a car.

They are more susceptible to others who would take advantage of them in evil ways.

The list goes on and on…

We still have dreams and hold on to the dreams of our children.

…and fears for their future.

As a group we ponder the questions:

What am I going to do when…

How will I handle this…

What about those who do not understand…

Tough questions with nebulous answers if any.  We will do our best with what we have to work with and the hope that the hand of God is displayed in our response.

We understand what the future holds to a certain degree.  We grieve and rejoice.  There are tears and laughter.

We are secure in knowing that the Lord will provide what He desires for our loved ones to complete their ministry on earth.

Yet our fears remain out of our own brokenness and the brokenness of the world.

I am honored to know these women.  I am blessed by their transparency and their profound faith.

For the reader who is isolated and feeling alone on this journey as the parent or caretaker of an individual with special needs please find a community in which you can share and be encouraged and strengthened for the journey.

Here is a great place to start

Not Alone - Where Special Parents Find Community 

Homeschooling Children with Down Syndrome

I don't go around promoting my  e-book, Homeschooling Children with Down Syndrome, so I thought I would remind you that it is still out there and still FREE.  It amazes me that it has had almost 13, 000 reads on Scribd.

If you haven't looked at it yet, I can tell you that it is based on what researchers tell us about how children with Down syndrome learn and is packed with suggestions on how to promote learning in our children.  My book is not only for homeschooling families but for all parents with an interest in how children with Down syndrome learn.  You will see my passion for homeschooling in the book but I hope you will also see my passion for all children with Down syndrome.  We all advocate in different ways for our children and this is what my advocacy has grown into.  This book has been my mission and ministry for almost 18 years now.  I didn't know it would grow into a book but with the prompting of the Holy Spirit it has and I hope you will find it useful in growing your children into the best that they can be!

We took a little time off this summer from formal learning but we are now happily back at work.  Reagan comes with joy to the learning table and thrives in her learning environment.  I feel hugely blessed to grow with her as the years go by.  One can only be humbled and grateful when set on this road less traveled...

Research - Targeted Intervention in Children with Down Syndrome

If you follow this blog and have read my free e-book, Homeschooling Children with Down Syndrome you know I am passionate about sharing what I've learned about how children with Down syndrome learn.  Much of my research has led me to believe that targeted intervention is the key to learning success in children with Down syndrome.  New evidence in coming out in support of the research of many:

Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome

If you are interested in following the research into how we can improve the lives of those with Down syndrome, you can find the RSS feed from Down Syndrome Education International on their website.  You can also follow them on twitter and facebook

I think soon I'll make public the summary of what I have learned about education and Down syndrome.  It is much more comprehensive than my e-book!

Righting Wrongs - Healing from Adversity

In my last post, Loving My Life, I shared briefly much of the adversity I have faced and how a grateful heart turns sadness into contentment - even joy!  As I ponder the path I've taken, the person I've become and the life I'm blessed with, I look at the lessons I've learned along the way.

The greatest lesson I've learned is to look for the lesson!  There is always something to learn from our circumstances and work to make something good come out of adversity.  This introspective self (me) ponders circumstances naturally.  I was born that way and can't seem to shake it.

Yes, I had a difficult childhood.  My children only know safety, stability, love and affection. My childhood made me determined not to repeat history.  A wrong righted!

In my experience, righting wrongs brings healing. To remain a victim of circumstances may possibly perpetuate the cycle of abuse and contribute to depression.

Don't get me wrong - I'm not a perfect parent.  I get tired, distracted, cranky.  I even raise my voice on occasion - mostly because of my own state of mind.  But my intention and focus is on not repeating the mistakes of my parents, and their parents, and their parents...

My parents had multiple affairs during my childhood and young adult stages. The ripples of pain flowing out of adultery affected me deeply.  I've made my marriage a priority.  I vowed early on to making my home a home where faithfulness is true and love and peace reign.  A place that is to be an escape from the madness that the rest of the world has become.  I know the sweetness of a good marriage, to a good man who shares my love for the Lord.  I find that an amazing gift - for our whole family. 


We don't live perfect lives.  I and aware of and understand much of my brokenness in the little things and the big things.   We are called to live and serve in a broken world.  It is impossible to serve effectively unless we understand our own brokenness.  Otherwise, we place ourselves above the broken and are unable to truly serve.

I've known devastation in the death of my children - but therein lies my strength.  What God put together in me as a new creation, reborn from devastation, was woven in Him and by Him.  I am, not by my own strength, but by His.  I faced the worst with Him and have been healed through Him.  God is good.  All that flows from Him is good and because of that I know a miracle!

I am the miracle.

My husband, children on earth and my children in heaven would want me to be healed and whole - and to tell the story of God's love for them and our family.  Perhaps I didn't get my prayers answered as Michelle was dying or for the wee one I only knew in the love and anticipation of another child growing in my womb but God loved us through all the joyful as well as the pain, sadness and healing.

I am a better mother, wife and friend because of adversity.

God is not the cause of pain and suffering.  A sinful, fallen world is the cause of all pain and suffering.     Our God, The Great Physician, is the source of healing.

I am assured of His continuous presence and know that He loves me in my angst and in my contented state.  An ever faithful God who loves unconditionally, heals without hesitation and bestows grace and mercy to all.  He calls us beyond our circumstances tell His story.  Love, healing and miracles require a response beyond gratitude.  I would love to hear your story!

Loving My Life

I have been wearing my I love my life* t-shirt quite often these days.  It brings me great joy to display my contentment with life.  People will often smile at me comment on my shirt as if they understand.  I often wonder about their stories but usually the opportunity doesn't present itself to take the time to converse.  

I've often pondered how I would  describe the breadth and depth of that which makes up this time and place in my life so wondrous and beautiful.  If it were a tapestry, it would be woven with rich colors giving it a dimension that I think few know.  Some will not have the life experiences I know or  perhaps they feel burdened by what life has placed before them.

I understand that place too.  I've been there.

I knew a childhood filled with periods of poverty, dysfunction, abuse and pain.  I was never to know what childhood is.

I've plumbed the depths of  grief after the devastating loss of my firstborn.  A subsequent miscarriage took me back to that all too familiar place.

I understand the uncertainty of serious personal illness.

I know parenting of two children with profound disabilities.  I know their struggles.  I know their pain.

I could be a vastly different person from what I am today.  I could feel bitter and burdened by what life has put before me.  I know so many who choose that path when faced with their own personal tragedies.

Yes, choose.

I could have passively wallowed in pain and bitterness but I chose not to remain there at any stage of my life.  Sure there were times when I was too weary to move forward.  At times, I held on tightly to my pain because by letting go of it  felt like the love I'd known would vanish forever.

Instead, I choose to be grateful for what I've known and know today.

I'm grateful for the little things like my cat gently waking me in the morning with her sandpaper tongue for no other reason than she desires my company.  I'm grateful for the wagging tail of my pup that greets me in my half slumberous state when I exit my bedroom in the morning.

I'm grateful for the big things that I know in a loving husband and the sweetness of motherhood in my living children.

I'm grateful for the brief time I had with my children who now dance with angels in heaven.

I am grateful for the presence of the young lady with Down syndrome in my life and all the lessons in life that  I've learned from her and through her. 

I'm grateful for the daughter that has reached young adulthood, is successful in college who is wise beyond her years.

I'm grateful for the opportunity and blessings that come with our homeschooling lifestyle.  That lifestyle has grown us and taught us all so many valuable lessons on loving each other and learning together.

I thank God all day long for His work in me and around me.

I'm even grateful for days when the temperature reaches 104 degrees outside.

Through all my trials, I've known the love of my heavenly Father.  I've felt the embrace of my loving Savior.  The gentle nudge of the Holy Spirit in my heart calling me to new wondrous places where love resides and hope never dies.  I feel a little closer to heaven every day.

A tapestry will never do as a representation of the breadth and depth of the beauty in my life.  Words will never fully describe what a grateful heart will know in the beauty that comes with embracing what comes, living in my Father's will and letting the Holy Spirit be my guide.  I can only hope my soul will be pleasing to God when I am called home.

I do so love my life.

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*If you don't know the story of Julie and Derrick Tennant, please visit them at The Love Chromosome.  You will be inspired by their story and perhaps you will get your own t-shirt!

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Linking up with A Wise Woman Builds Her Home

Which Way?

"Do not go where the path may lead, go instead where there is no path and leave a trail."

       Ralph Waldo Emerson

These words are so inspiring!  There are so many choices we make in life. Often we tend to take the path of least resistance, the paved path or follow the advice of others.  We forget to take time to really discern what might be best for ourselves and our families.


What IF we choose to spend time in prayerful discernment?

What IF we choose to discern what is best for our family despite the external pressures?

What IF we choose the unmarked path?

When a parent enters into the world of raising a child with special needs, they receive lots of advice - some desired, most not.  Parents are pressured by well-meaning folks who seem to have all the answers.  The Holy Spirit may be whispering the way through the maze and confusion but we can't hear because of all the noise and pressure.

Perhaps the right path for your family is within the system - early intervention, public schools and transition/work programs into adulthood.  A right path for many families.  God is a work within the system too.

Perhaps the right path for your family is working with your child outside the system and targeted intervention.  A path chartered by listening to what God wills for your family and a path designed by God.

Sound scary?

Perhaps, but that fear will fade to be replaced with the confidence engineered by the Holy Spirit.   You will come to understand you really are your child's best teacher. You will see your child learn and grow and his/her own pace. 

God has His own timing and so do our children with special needs.

When you walk in His will, you know peace...

...and your trail marked with blessings.

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Speaking of leaving a trail,  if you are interested in homeschooling your child with Down syndrome please look at my free e-book Homeschooling Children with Down Syndrome.  In this book I share much about how children with Down syndrome learn, methods, curriculum tips and more!

Wise Words

As I journey on this road less traveled, I often recall these wise words of a fellow traveler:

"As parents, we trust that the Lord will provide all that is needed for His (our) children to fulfill His mission for them while on earth."

We trust He will provide for our typically developing children and, perhaps more so, for our children with special needs.

These words bring immense comfort to me as I consider my daughter's present path and future.  I trust He will put all we need in our path so that Reagan's ministry on earth will be according to His will.

I have seen the Lord's work in me and my work in helping Reagan overcome obstacles in learning. He travels this path with me.  He places before me all that I need and more.  I trust He is at work in her and for her.

I know her heart.  It projects love.  Love for the Lord, love for her family and love for all she touches.

I am fascinated by her mind and how she thinks.  The questions she asks are thoughtful.  Her assessment of situations is often right on track.

Does she know everything that other 17 year-olds know?  Absolutely not.

Academic knowledge does not define her.

Reagan does know relationships better than any other person I know.  She gives and receives.  She is transparent and without inhibition in sharing herself.  She knows anger but harbors no grudges.  Her forgiveness of the transgressions of others is genuine and immediate.  She knows sadness which makes her highly sensitive to it in others.

Reagan's relationships define her.  Her relationships with God and humanity. I am saddened by those who have eyes that cannot see.  Eyes which do not value her and others with Down syndrome.

Somehow I doubt that St. Peter checks IQs at the gates of heaven.  God does not care about how smart we are.  He does care about how we love Him and each other.

So, let us learn from Reagan.  Learn how to love and forgive like she does.

Let us walk in love and forgiveness for a taste of heaven on earth and joy in the journey.