Wednesday, January 21, 2015

Overcoming Fear for the Future for my Child with Special Needs

God is love. When we take up permanent residence in a life of love, we live in God and God lives in us. This way, love has the run of the house, becomes at home and mature in us, so that we’re free of worry on Judgment Day....
There is no room in love for fear. Well-formed love banishes fear. 
Since fear is crippling, a fearful life—fear of death, fear of judgment—is one not yet fully formed in love. 
I John 4:17 The Message
Fears, Prayers, and Hope for the Future

I've read that fear and faith can't co-exist.  I don't believe that's true.  Until we've been made perfect in love, we will battle fear and worry. I know God says "Fear Not"!   I do have faith in God's goodness and grace.  But what my head knows and what my heart feels are two opposite things right now.

As a mom of a child with special needs - I have a confession. Fear of the Future can threaten to overwhelm me.

This fear  is is a bigger monster than the one I had to overcome when Bethany was born and I was "afraid" of Down Syndrome and what it would mean to our lives.

This fear is amplified by unknowns - It's a two part question:

1)  What does Bethany's adult future look like?

 and the bigger question -

2) What is going to happen to Bethany when I'm not around?

  The Future is Coming Faster than I Can Comprehend

I don't know if  this battle against fear started when Jeff and I  began creating a special needs trust, guardianship, and the process of updating our will, this summer. All necessary planning - but I've been living in the moment - not 20 or 30 years down the road. I don't want to think about the Bethany's future without us in it!

The fear multiplies as we look ahead and try to plan. Jeff and I are dismayed to find so few fulfilling, productive work opportunities available for adults with disabilities.   We want so much for Bethany.  What will she be able to achieve? How can we help her learn the skills, overcome social stigmas, and find her niche in this life?

Stressful and Confusing 

These two words describe trying to understand the special needs 3 ring circus of IEP's, laws, and long range planning we're supposed to be doing - all things we need to figure out before Bethany becomes 18 to help her thrive in adulthood and independence.

But one thought is the strongest foe. And, it's the one thing I can't control or change.

It's the realization that my other children are grown, fulfilled, happy, and all married with families of their own.  If I died today - I know they would be sad but they would be OK - able to handle life.

But what about Bethany?

This is the crux of my fear.  In my heart and mind, I can't contemplate dying and leaving Bethany alone.

Fear tries to strips me of reason and faith as I ask "who will love her as completely, or understand her essence, see past her disability or advocate for her- as her mother does? Who will pour their life out for her?"

Even as I write this, I know her siblings adore her and she has many friends and advocates.  But I know how much vision, passion, time and energy this journey takes and I "feel" like she's my responsibility - "my" Bethany.

BUT - 
 here's the turning point -

I  know I need to begin to see her as belonging to God - 
She's really "God's" Bethany. 
She is in His loving care.
And so is your child.
And so are we all!

We can have hope in God's love for our children.  
They will never be alone, for they are perfectly loved by our Father in heaven.
Pray with me today: Oh Perfect Love - our Father who is over all - free us from the tyranny of fear! May you baptize us with your love and let it permeate every cell of our being.  Thank you for Your promise that You are with us always - even to the end of the world.  Hallelujah.  Amen.

1 comment:

  1. Tears. I can't know what it's like to be you, but I do know that we all have those heart stopping thoughts. All I know is that we must trust, pray, stay in the Word, and stand on the FACT that precious Bethany and all those with special needs, including my beloved grandson Hunter (we call him Huntoo) are in the TIGHT grip of God's loving hand, never to be let go. Never. He is faithful and cannot fail. Love you, my friend.