Fear of the Future: Parenting a Child With Life-Long Disability

     The other day I was sitting on the couch about to stand up and I asked my sweet Bella to help me up (it's a fun game we play because she loves pulling heavy things....it's a sensory thing with autism).  She came gladly and grabbed my hand as I pretended to be an old lady needing her help to stand saying, "Oh Bella help, I can't get up" in my best old lady voice.  After she helped me up, and while giggling with delight, she skipped away and my heart suddenly and unexpectedly sank.... my mind flashed me forward decades.

     I was an old lady sitting in a chair, asking Bella to help me stand up because I literally couldn't.  Bella was a woman, she was still living with us and still needed me desperately.  The older version of myself felt helpless and hopeless because my body was failing and yet my sweet child (now adult) was still in need of me.  Not only in need emotionally, but also physically.  She still needed sensory input, still needed to swing and jump.  She needed me to pick her up, help her bathe, and change her clothes.  My heart broke inside.  A solitary tear began to stream down my face as I flashed back to the present.  The future was so hopeless.  I felt so scared I almost threw up.  What is going to happen when I get old?  Then the tears really started to flow when my mind allowed me to think of my own death....what will happen when I die?  Who will love her like me?  Who will watch out for her safety and well being?  How will she ever understand the loss of a parent? How will my loss affect her?  I ran into the other room at this point gasping for air as if I was about to hyperventilate and found the loving arms of my husband.  He silently held me and told me it was going to be ok.  His hot tears found my face and we began to pray for her future.  Sometimes a prayer is the only way I can cope with my greatest fears.

     These are low thoughts, I know.  Friends, if you have a child with life-long disability I know you've been in this place, the one I just explained.  I often try to push out the thoughts of my death because I begin to panic.  My sweet husband often reminds me of the ways in which we will financially provide for her and some of the plans we can make to be sure she is taken care of... but, it's still a very hard topic for me.

GOD'S TRUTHS AMIDST MY FEARS:

Psalm 121:5-8
The Lord watches over you
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.

The Lord will keep you from all harm
he will watch over your life;
the Lord will watch over your coming and going
both now and forevermore.

Friends, the Lord created our children and will watch over them forever, long after we are gone.  It's a terribly hard and gloriously amazing promise.  But to dig even deeper....He created them for a purpose....

Psalm 149:13-14
For you formed my inward parts; you knitted me together in my mother's womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.

Exodus 4:11
Then the Lord said to him, "Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?

John 9:2-3 (to read more that I have written regarding special needs parenting and this verse click here)
"His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
'Neither this man nor his parents sinned', said Jesus, 'but this happened so that the words of God may be displayed in him".

Here's the hope.  Here's the place where you and I can find joy amidst our fears.  In the knowledge that God made his creation exactly the way he intended.  There was no mistake.  He looks at your child with such love and is pleased with them.  He will watch over them long after we are able.  He will use their imperfections to stretch us, teach us, and mold us into better people.  After all, when are we closest to God?...well, it's when we are calling out to him for strength and asking for wisdom.  As a special needs parent that is EVERY SECOND...OF EVERYDAY.  To God be the glory.

Jar of Tears: Finding Joy Through Disability

Welcome Weary Soul.


Today I want invite you to take a journey with me.  One that I desperately need to take.  One I've been praying about for many years as a mother of a child with life-long disability.  This journey is for those who are physically or spiritually broken, often hopeless, and in desperate need of a constant beacon of joy in their life as they walk this unique path of parenting.


In Psalm 56:8 it says of our Creator God,

You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.

Today's truth is that God knows your joys and sorrows. As I dig through scripture to understand God's purpose in suffering, this blog will serve as my virtual jar of tears.  There is something beautiful about this portrait of a God collecting and cherishing the pain of His creation.  What a personal and precious act .... visualizing the way He comprehends every ounce of our doubt, pain, uncertainty, anger and joy?!

I am about to begin an in depth Biblical study on the ways God purposes my/your child's disability for something beautiful...

....for hope
....for joy
....for His glory
....and for my/your good!

I know those statement can be painfully hard to hear. You may be rolling your eyes at me already.  I know this because sometimes I don't believe them.  Why would God make my child seemingly imperfect?  Why would he allow her to suffer? Why doesn't He heal her?  What purpose could disability serve for good in my life as a parent?  Why at times do I lose heart and feel angry at God?

If you promise to open your heart with me,  I plan to thoroughly prove to you that God knows your pain, He feels it, He sees it, and He purposes it for something great.  If you don't believe me, I understand and know that I am already praying for your heart.  That as I work through God's promises to you and me, that you would see Him in a very real way, as the divine Creator of your disabled child who loves them even more than you! Now, if you are reading this and do not have a disabled child and are fighting for joy generally, these truths are for you too!

My plan is to compile my joyful and painful "tears" then share Biblical truths about each of them to help keep the beacon of joy lit in my heart (topics like depression, loss, anger, frustration, pride, hopelessness, bitterness ect). Once my study has been prayerfully and sufficiently compiled,  I pray that God allows me to put this together in a book or study of sorts, which can be shared with other families like mine.

The day my daughter was diagnosed with autism was painful (read more by clicking the link).  I searched everywhere for a compilation of scriptures and truths that were just for me (a parent of a child with a disability), and my search came up lacking.  So today I am putting one together.  I hope that one day, a mother like myself can be blessed by this compilation of scriptural truths about disability and finding joy in God.


Side Note:
I know many of you followed my family when we shared our life on www.navychaplainastory.blogspot.com.  That blog was beyond therapeutic for me personally as I struggled through life during deployments and an autism diagnosis.  Please feel free to recount that journey by visiting the blog and learn more about our family! I decided to take a break from the family blog, finish my Masters in Special Eduction, and now to start fresh on this newly focused journey!