Tuesday, June 18, 2013

I Want To Be Just Like Him


"I want to be just like him some day".... I must have thought that thought more than a million times when I was growing up.  I watched him care for his crippled wife who couldn't feed herself, couldn't dress herself, couldn't bathe herself, and who was bound to a wheelchair.  He treated her with such tenderness, honor, and unyielding devotion.....she repaid him with the unabashed kind of love you only read about in famous novels that have passed the test of time.

Fast forward the reel of life, and I am now a caretaker.  Isn't it ironic how God uses life lessons to prepare you for His divine plans?  I now see "why" that incredible man was placed into my life.  The picture is clear, because now I feed two little one's who cannot feed themselves, I dress them, bathe them, support their sensory issues and since they cannot speak, I get to be their voice too.  The tenderness and unyielding devotion that man had to his wife makes perfect sense to me now.  It was easy for him, because he put himself into her shoes every moment of every day.  A day never passed that he didn't stop to imagine what it would be like to be handicapped like her.  I know this is true, because I now do the same.  And that unabashed love she had for him, my little ones now lavish upon me.  Oh, how blessed I am to hold these truths close to my heart.

The June 16th devotion from Oswald Chambers' "My Utmost For His Highest" left me sobbing.  It talked of just this very subject.  To quote:  "Jesus does not ask me to die for Him, but to lay down my life for Him....It is much easier to die than to lay down your life day in and day out with the sense of the high calling of God...Salvation is easy for us, because it cost God so much.  But the exhibiting of salvation in my life is difficult." 

That man with the crippled wife understood these words.  And now I do.

My nature is to be social.  I am a people person who enjoys going out with friends and having a grand time.  I would love to be able to go on misson trips to Africa, to be a regular part of a book club, to lead a Bible study for women in my neighborhood, etc.....But my calling is to give up that part of me, to sacrifice that part of me, and to be a caretaker.  To be the absolute center of two little lives who need me.

We recently hired a babysitter to come once a week, on Sunday evenings, to watch Hope and Charlie for a few hours so we could get out and enjoy intentional time with our older children.  This sitter was very trained, she has a degree teemed with experience working with special needs children in the local school system.  I had high hopes, but last Sunday when we returned home, I knew this was going to be another sitter (from a very long line of many) to never return to my home again.  Her words over a facebook message to me today:

I hope your having a great week! I want to first say that I loved meeting you and your family on Sunday. Charlie and Hope are adorable and very sweet. I am writing to let you know that I have been thinking and praying about this situation since Sunday night. I enjoyed babysitting Hope and Charlie, but I was very worried or Hope's safety and my ability to keep both of them safe. After much thought and prayer, I have decided to cancel the babysitting job we have set for Sunday. I wish you all the best and I know you will find the right fit for your family, but at this time I don't feel that it's me. Thanks again for allowing me to take care of your babies and best of luck to you.

And it stings.  No, it is worse than a sting.  It is actually physically painful to my heart.  My darlings have been rejected yet again.

The truth is, I live with two little ones who are rejected by society daily because they are so different.  Even typing those words causes me to begin sobbing all over again.  Churches have told us there is no place for Hope and Charlie because of their "unique" needs...we no longer get social invitations from "friends"; in fact, our last invitation was when Hopey was still a very small baby....and babysitters are typically only a one time deal.   In restaurants, people move tables to get away from our family.  In malls, people stare and shake their heads in disgust.  Recently, a man stopped to inform Chappy that Hopey was too big to be in a stroller...that she needed to walk like everyone else.  Chappy just smiled and walked on, knowing that Hopey heard and understood the words the man had said.  But she didn't have a voice to be able to explain how her body goes into sensory overload in a crowded space and how her stroller gives her security.  For the sake of all that is good in this world, she is seven and doesn't have a voice!  I remain in a horrible state of awe about how our world treats the weak.  After nearly 8 years, I am still shocked by the cruelty of it all.

But then Oswald Chambers comes along to remind me that what matters to God is that I am true to His calling for my life.  My life is not my own.  I have been bought with a price.   And the lessons I am learning are FOR ME!  The hurt and the pain is FOR ME!  So that I may step out and use that pain for good.  And that is the real message of this post. 

The man in the picture above is my grandfather, and his crippled wife was my beloved grandmother.  I grew up hearing stories of how she was rejected, even told that "people like her should stay home where they belonged".  But my grandfather wouldn't allow it.  He paraded her around with such pride.  I watched it.  He applied her makeup, fixed her hair, dressed her in beautiful clothes and showed the world how much he loved her.  And it made a difference.  To me.

So, in spite of the world, I will do the same.  Because I want to be just like him!

NOTE:  In a few weeks, Chappy and I are going to be partnering with a wonderful church in our area to begin a Saturday service that will be open for special needs families.....where families can openly worship together!  Will some of the individuals who have special needs shout out and make noise during the service?  Oh, I hope so.  What a heavenly noise that will be!!!  Will some get up and dance?  I REALLY hope so!  I can think of nothing that would please the Lord more than a special needs child jumping up to dance for Him.  Our goal is for people to come just as they are to worship our incredible God who is Creator of ALL and Who never makes mistakes!  The percentage is pretty staggering:  90% of families who have special needs members do NOT attend church.  We are so thrilled about this new ministry and will post more specific details as we have them!

Friday, June 7, 2013

A Modern Day Miracle Of Sorts

This video is sadly based on fact....too many times people are afraid of things they are not familiar with.  By choosing to embrace our circumstances and laugh, we are hopefully making a powerful statement.  Life is too short to focus on the negative.  We choose JOY!!!

Wednesday, June 5, 2013

Parenting A Special Needs Child

"Everyone needs to experience what its like to parent a special needs child!",  said a friend of mine more than 10 years ago.  Long before I had Hope.  I watched Andrew play soccer on Caleb's team week after week.  Andrew was born with an extra chromosome and was precious.  Our whole team loved him. 

When Andrea made the comment, I remember thinking to myself:  "It can't be that difficult to parent a child who has Down syndrome....just look at Andrew, he is sooo sweet!"  And then came Hope...followed by Charlie.  And when I have days like today, I repeat Andrea's words almost like a mantra:

Everyone should experience this:

This morning, Hopey found mud in our backyard.  A whole lot of mud.  So much mud we had to give her a bath in the plastic pool in the back yard:

Then as soon as we got her cleaned up....and I do mean just as soon as we got her cleaned up....Charlie comes waltzing into the great room completely nude and covered in poop from head to toe.  While Hopey was outside bathing in mud, he was inside bathing himself and my foyer in poop.

While it was a mess....a TOTAL mess....oddly enough, this experience was actually great sensory stimulation for both of them!  And the fact that Charlie was able to disrobe from his pants, shirt, and pull up....wow!  That took motor planning!

ONLY the parent of a special needs child (or two) could find the silver lining in a morning like this.

"I will refresh the weary and satisfy the faint."  (Jeremiah 31:25)