Prayer Journals - Finding Peace on the Journey

“Come to me, all who labor and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.  For my yoke is easy, and my burden is light.”   Matthew 11:28-30

Those of us who are raising children with special needs know many places that those who are raising typically developing children cannot know.  We have many more worries and concerns for our children.  We spend an enormous amount of time in physician’s offices, deal with multiple health crises, interact with insurance companies, see that our children receive therapies they need, deal with challenging behaviors, IEPs…

The list goes on and on.

Friends and acquaintances often wonder how we do it all.  I know you know the downward glance and the lateral shaking of heads – and sometimes wonder the same thing.

How do we do it?

We do - we do it as best we can at any given moment.

Not one of us is SuperMom. You might be wearing your SuperMom mask and cape but I know your heart.  I understand your struggles.  I wear the mask and cape too.

We wring our hands in worry.  

We tend to ruminate about our present circumstances and about future unknowns.

We often have trouble sleeping.

We may suffer bouts of depression.

We often stumble, fall and weep in our weakness.

But you won’t see it.  It usually happens when no one is watching.

In our struggles, we often forget that we are not alone.  We forget to consult the One who walks with us every moment of every day.

In our weary, overwhelmed state, we cannot see, hear or feel our Lord’s presence.

We are blind to the One who longs to offer us comfort in the midst of our suffering and the chaos that swirls around us.

Rest assured, He waits for you.  He longs to carry your burden.  

In love, He wants you to give it all to Him.

People often wonder just how to accomplish such a task.   I admit I found it a daunting task too.  But I have a tool that I use which has really helped me to see that it is possible.

Mine is a small spiral notebook which goes everywhere with me.  You won’t know it is special.  You won’t know it carries much of my heart unless I divulge its secret.

I call this little notebook my prayer journal.  The contents are what I have given over to God.  It is a tangible reminder that I am never alone.   It is immediately available just like our Lord is and it waits to hear my heart just like He does.

It is a tool that I can refer back to and see just how God is working in my life, the lives of my husband and children and in the lives of those I pray for every day.

I also find it helps me seek better ways to glorify Him along the journey.  It makes me thoughtful about my words and actions for in the end, I must be held accountable.

In my prayer journal, I record the ways in which my children with and without special needs minister to others, make a difference in this world and glorify God in the process.

It holds my failings too.  It is my safe place to pour out my mistakes, my grievances, and my pain.

The beauty of this prayer journaling is that as I write I know He hears and I can then let go. 

My burden is lightened, if not lifted, and I am free to take on whatever comes my way.

I started quite simply with three columns in my journal -  a simple plan for a simple girl.  The first column was a date for the initial petition, the second for the petition and the third for thanksgivings.  As I really began to see the works of God in my life it grew.  My prayer life began to expand along with a deepening awareness of the Lord’s presence in my daily walk.

My prayer journal started out as a tool and has become a gift.  What started out as a way to a more focused prayer life has become the way to give the Lord my burdens and my sins.  It has become a place where I know profound gratitude for all I am blessed with and by in relationship with Him.

A little nondescript notebook transformed to a place where I know the love and mercy that springs from an ever-growing intimacy with Christ.  This anxious mother and wife transformed into one who trusts the Lord in all things, has confidence in His plan and knows the peace which passes all understanding.

 I walk in amazing grace - to God be the glory.

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”   Phil 4:6-7

Everyday Heroes

Who are the people you admire and respect?

Those on the cover of People Magazine?

Those who obtain financial success?

Those who boast of their wonderful deeds and service as they ladle soup into bowls?

We live in a culture which has a star mentality.

Nobody really wants to hear the stories of everyday heroes.

Few can tolerate the reality that many families face.

A reality that knows great suffering

Yet knows greater love

How about those parents who tend to their precious little ones receiving chemotherapy?

How about the parents who labor in love with their child who cannot talk, walk or feed themselves?

How about the parents who advocate over and over and over for the child who has no voice.

How about the parents who adopt and rescue children from poverty, sickness and despair?

How about the parents who must hand their child back to the Creator after serious illness?

Parents who struggle

Parents who weep

Because they love

And understand the call before them

Heroes who give beyond their own brokenness

 

Who walk in grace

Infused with Divine strength

        

Few will have their story told or make the cover of any magazine. 

 

They will never receive a medal for their service

Heroes just the same

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 

Dear Caregiver

I wrote this several years ago for Reagan’s first extended time away from home.  I think she was about ten when she went to church camp for the first time.   I wasn’t sure how well-schooled her camp counselor might be in dealing with a child with special needs so I tried to briefly cover some bases to assist the counselor and ensure that Reagan had the best experience possible.

I broke down my concerns and what might be important for the counselor to know into various categories.  I tried to make it simple and easy to read so as not to be overwhelming to someone who might not know the lingo that we all come to know as the parent of a child with special needs.

Interestingly enough, her first camp counselor turned out to be a special education teacher who has a heart for children with Down syndrome.  What a blessing that week was for all of us!

I think this format would be easy to adapt to many other situations where the caregiver or  volunteer might not be comfortable without knowing a little something about our kiddos with special needs such as Sunday School, youth group or other youth activities.

Dear ______, 

Reagan is excited about spending time with you and wants you to know a few things about her.

Reagan has Down syndrome.  Children with Down syndrome have cognitive delays, speech and language delays and physical challenges.  In getting to know Reagan, the following might be helpful:

Personhood

Reagan has Down syndrome but it doesn’t define her.  She is a child first.  She has the same dreams and desires as other children.  She wants to do and participate with others without a great deal of attention drawn to her or her special needs.  Treat her as you treat all other children.

Safety

Of  utmost importance is safety.  Children with Down syndrome are known for wandering off in the blink of an eye.  It is important to have a pair of eyes trained on her as she participates in individual and group activities.  You might expect her to wander if she is bored, if the activity is too loud/overstimulating or if she is upset.

Reagan may make unwise decisions and needs to be watched closely in new situations – and redirected/corrected as necessary.

Developmental Age

Though Reagan is __, her developmental age is younger.  The most important element of her younger developmental age is that she is a concrete thinker.   Therefore, communication should be conducted in a concrete manner - simple, familiar (but not babyish) language with shorter, concise sentence structure.  Idioms, figures of speech and slang are often meaningless to her.

Speech and Language

Reagan has wonderful language skills and can express her wants and needs quite well.  She understands more than she can say.

Reagan’s speech can be difficult to understand at times.  Ask her to slow down and try again and she usually corrects any errors. 

Memory

Reagan has trouble with her short-term memory.  Repeat rules or commands as necessary.  Her long-term memory is excellent.  Once she knows you and loves you, you will be her best friend forever.

Processing

Reagan may not fully understand what you want from her at times - especially in new situations.  If necessary, simplify, repeat, and/or rephrase requests. 

Behavior

Reagan is generally compliant but has some stubborn moments.  It helps to verbalize expectations and what needs to be done.  Reagan will not understand most nonverbal cues unless they are specifically taught.  For example, most children respond to gentle shoulder pressure to move along.  Reagan will not understand unless you verbalize your expectations at the given moment.

She may need longer to transition to a new activity unless she is aware of how the day will go.  A few minutes before transition to remind her of what is coming next should help immensely.

To encourage compliance:

1.       Insist on eye contact when speaking to her

2.       Keep language simple and straightforward

3.       Simplify, rephrase and/or repeat instructions as needed

4.       Have her repeat what you told her if necessary

Negative consequences are generally ineffective with Reagan.  Gentle, persistent encouragement is most effective as is “1, 2, 3 magic.”

If Reagan is bored or tired, she may enter into her imaginary world.  It is preferable for her to stay in the real world but sometimes she needs a break from the demands of stressful (above her developmental level) situations.

Social

Reagan is a very social child and loves being around people.  She is occasionally socially inappropriate.

She loves to hug others.  “High fives” or a handshake should be encouraged instead of hugs.

Violating the personal space of others is common.   We use the term “personal space bubble” when referring to a violation and she will respond appropriately by moving away.

 

Physical

Reagan has fine motor (small muscles i.e. fingers) and gross motor (large muscles) delays.  She may need assistance with crafts and games.  She generally moves slower than her peers and needs encouragement at times to keep up with the group.

Reagan is a good swimmer and independent in the pool.

Reagan has a permanent pacemaker and cannot play contact sports/games.

She wears her glasses 24/7 (except in the pool) and cannot see without them.

Hygiene

Reagan is independent in self care but may need reminders to complete activities of daily living.

Church Services

Reagan knows what is expected during church services and is generally well-behaved.  She participates fully and takes Communion.

Spiritual Gifts

Reagan has been blessed with many gifts which will enfold before your eyes.  She loves unconditionally and very sensitive to the feelings of others.  She has a joyful spirit that is contagious.  All who take the time to know her will be immensely blessed.

Three Monks on an Island

I ran across this parable this week and it has left me pondering what it means to faith communities in learning to walk alongside people with special needs.

Three Monks on an Island

By Leo Tolstoy

"Three Russian monks lived on a faraway island. Nobody ever went there, but one day their bishop decided to make a pastoral visit. When he arrived, he discovered that the monks didn't even know the Lord's Prayer. So he spent all his time and energy teaching them the "Our Father" and then left, satisfied with his pastoral work. But when his ship had left the island and was back in the open sea, he suddenly noticed the three hermits walking on the water-in fact, they were running after the ship! When they reached it, they cried, "Dear Father, we have forgotten the prayer you taught us." The bishop overwhelmed by what he was seeing and hearing, said, "But, dear brothers, how then do you pray?" They answered, "Well, we just say, 'Dear God, there are three of us and there are three of you, have mercy on us!'" The bishop, awestruck by their sanctity and simplicity, said, "Go back to your land and be at peace."

Many individuals with significant special needs cannot speak or if they do their communication skills may be lacking in some way. Some cannot memorize the prayers that we all know by heart. Prayers that may make us feel closer to God the Father, God the Son, and God the Holy Spirit.

Are those prayers necessary to have a deep relationship with the Trinity?

This parable displays what we, parents of children with special needs, already know.

Faith is what the heart knows and understands.

Our duty is too teach our children just how much God loves them. They don't necessarily need words to walk in faith and complete God's will for them on earth...

Share|

As God Views...

Through the lens of Love

As He views the rest of His Creation

As His precious Child

Bearing His Image

As an intentional part of His creation

With a ministry to fulfill on earth

As one who bears unique gifts

Valuable to the faith community

As His beloved

Sent to glorify Him in her life

As a sinner

With a repentant heart

He revels in the beauty of her soul

Washed clean by the Blood of the Lamb

Created for eternity

Just like you and me

Share|