Tuesday, September 22, 2015

To Just be the Parent

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. 

I wrote from a heart that had been hurting and famished for seven years, "......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?"

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.

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.

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!!!

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.

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.

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.  Never,  EVER,  have we been encouraged and welcomed, and asked to just be his parent.

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.

Three years ago I wrote: "... 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."  I'm filled with gratitude that that prayer was answered for our family!
And for others, I want to share hope that there exists ministries such as The Elisha Foundation and Joni & Friends, 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.

For those of you who can't make it to church due to exhaustion and overwhelming needs of a dependent, Key Ministry has some incredible resources for online church. Visit their website Church 4 Every Child to learn about Front Door church and online services from Community Bible Church.

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!

Monday, September 7, 2015

Longing and Gratitude

Since the day I first watched this brief video it has been embedded in my mind. The simple, yet utterly profound, words of this young man living with Cerebral Palsy (CP) have been pondered in my heart over and over.

My child does not live with CP, however, I would dare to say my Boy Wonder, who has FASD & Autism, experiences so many of the same feelings as Roger Flournoy, Jr. when he stated: 

"I want to be everybody's friends and that hurts me because I can't help the fact that I have CP".

Boy Wonder is one of the most handsome young men you will see, therefore, the expectation is that he is typical. However, place him in his peer group and watch as the FASD unfolds itself in his dysmature behavior and social dysfunction.  He did nothing to deserve FASD, and there is no cure for FASD. He will struggle his entire life with the hurt feelings of rejection because of a  neurological disability.

You may not realize that CP and Down-syndrome are visible disabilities that often cause people to shy away because they don't know how to respond to the physical differences they see in someone.

While Fetal Alcohol Spectrum Disorders and Autism/Aspbergers are invisible disabilities that often cause people to shy away because they don't know how to respond to the emotional differences they see in someone.

All of these often lead to the same core feelings for our kids: loneliness.

The hardest thing is loneliness. I am my own greatest enemy when I am left to my loneliness.” Roger

My heart weeps when I hear those words! For Roger, for my neuro-typical son, for those who are non-verbal, for all the thousands of kiddos living with FASD.  The loneliness is so real.

Spoiler alert: the wisest words on this 4 minute video are these, "Jesus paid the ultimate price and if I don’t totally worship him it’s like I don’t appreciate him dying for me."  Roger Flournoy Jr

Those are the words I have pondered over and over in my heart the past few days.  Oh, that I would have the simple, deep joy of this young man living his entire life with CP!  Even with his disability, even in his loneliness, he is choosing to be filled with joy that can't be shaken. Gratitude. Overwhelming gratitude.

I hope you will take the time to watch his story unfold and allow his words reflecting the peace and power of Jesus Christ, to fill your soul with gratitude as well.