I John 4:17 The Message 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. 
Overcoming fear about the future of
my child with special needs.
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.
[Tweet “Perfect #Love overcomes #fear. “]
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- What does Bethany’s adult future look like and the bigger question- 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 are the two words that describe trying to understand the special needs 3 ring circus of IEP’s and 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 if I died today- I know they would be sad but they would be O.K.- 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.
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.
[Tweet “We can have #hope in God’s love for our children’s future. #specialneeds #noFear “]
They will never be alone, for they are perfectly loved by our Father in heaven.
Sweet friends- you’ll never know how much I treasure you! Thank you for sharing our life journey and the good treasure of God’s love.
Surprising Treasures: I John 4:17 The Message
To Love, to Be Loved
17-18 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.
Thank you for sharing. Yes having two kids with Down Syndrome and a wife with severe M.S I too can’t imagine not being here for them. My son is especially close to dad and literally clings to me all the time.
I know part of me likes that and we all want to be needed weather we want to admit it or not. God forbid that I am replaceable.
I was at our little cabin this Tuesday and the Lord took me to the book of Job. I had been through a just horrible week. I failed the Lord in so many areas. I could not find Him and the horror of never being able to return was my reality.
I saw no way to save my children, wife and now myself. I was/am completely impotent
In Job 25 Bildad was telling job how we are worms and about God’s greatness. So true but gave no benefit to Job in hearing these religious responses. Then the truth came.
“How you have helped the powerless!
How you have saved the arm that is feeble!
I saw it… That is me. I broke down and wept like a child who after being lost had found his family again. I have no power to save or change anything. I am absolutely dependent. After all the bible says that we can do nothing without Him. That ALL good things come from the Lord. Yet I really don’t want to hear that. I want to be loved and needed for what I possess. For the great dad that I am or the great support I provide. How can I be replaced.
Well who provided me for my child and who put the love in my heart for my child? I didn’t.
So now I know that I am not needed… I AM FREE NOW! NO FEAR!!!! The Lord provides and has provided and always will for He purchased us with a great price. Into thy hands I commit my spirit. More important than a child I think!!! If we trust him for that which is eternal how much more than that which is temporal! YEA I AM FREE TO PRAISE HIM WHO LOVES ME AND HAS PROVIDED FOR EVERY NEED!!!!!
John- I am so honored and blessed to have “met” you and Sarah!
God is so patient and good and kind and full of daily mercy. Your words encouraged me to keep working through these fears.
It’s been so daunting to me- as we begin to plan for Bethany’s future as an adult. But as I step back as nurturer/protector – I’m praying God will give me a bigger vision of Who He is. He did that for you! You’re right- we are truly impotent- dependent upon the Lord’s gracious goodness. And that is where I want to live.
Thank you for sharing your heart- you are such an encouragement and blessing to me!
Praying for your whole family as you walk this journey toward our real home!
Blessings!
If there is anything good that comes from this vessel it is because of two things. 1. Jesus 1. the Cross. All is due to Him. I rejoice in both for they yield much fruit!
Amen! He is our all in all! So patient, kind, full of grace and truth that sets us free!
Thank you John! Great words. Hopeful words. Honest words.
Interestingly, I was in Job last week too!
I spent last week chewing on Job 33. The more I chewed the more it filled me with revelation about God’s ways of working out His redemption in our lives.
Precious Cindy, your writing echoes the hearts of so many. My dad used to say that if the
adversary cannot attack a Christian any other way, he uses discouragement, anything to
distract us from keeping our eyes on Jesus. Which is why the story of Peter walking on water
is one of my favorites. He did the impossible…until he was distracted by the storm around him
and his own frailty. The accuser uses the same tactic with us. But, our God inhabits praise.
I discovered that for myself the last time our house gave us plumbing problems. The enemy
must know how much I hate that! I decided I was going to take that attack as an opportunity
for praise, even telling that old fox that messing with our plumbing was going to force him to
listen to me praising the Lord. Guess what. No further problems in that department. 🙂
Another thought popped into my head while reading this blog: We are indestructible as long as
God still has work for us, here. Don’t you love that?!
Let’s pray for each other asking the Lord to exchange our fears for the future into excitement
in anticipation of what He has in store for us, for He alone knows the plans He has for us, for
good and not for evil, to give us a future and a hope. Along with that thought, here’s what
excites me. The Lord has something huge on the horizon – the heavens declare it, the glory of
the Lord! Whatever could it be? 🙂 See especially Graph 8A at
http://bloodmoonscoming.com/?page_id=127
Edy! Your words are like honey to my soul! You are so right about praise- about perspective. I would love to have you pray for me and I pray for you! I’m watching and get so excited about the “signs” that are all around us that hint at the Lord’s coming. But- and I don’t mean the “but” to contradict anything, 🙂 the hope of the future is where I’ve been focused on. Until the last few weeks.— It’s like a “reality” hit me that we have to plan for Bethany’s unknown future “in case” the unthinkable happens. ewwww- ick! I’ve also been listening to podcasts to parents of children/adults with special needs that help you set plans into place- because failure to plan for Bethany would spell disaster. (the State comes in and it gets so very complicated.)
That being said- I bumble along, trying to rest in God’s amazing love but live each day in this crazy, fallen world.
You are such a blessing to me! Prayers- hugs and blessings!
Somebody gave me a quote years ago that I’ve appreciated so much: “Plan for the worst, hope for the best,” to which I added, “then you can take what comes.” You also remind me of something I heard about Martin Luther. Someone asked him how he would spend today if he knew he would die tomorrow. He said that he would still plant a tree.
Avoiding state intervention is certainly a good motivation to establish plans! You are such a good steward of the gifts the Lord gives you. (I know my struggles to downsize, etc, so I don’t leave a mess for family to have to deal with!) And, I can imagine what a weight is lifted when you know you’ve covered the bases. It certainly is a challenge to live in this “crazy, fallen world.” Help, Lord! Thanks be to God, Jesus has overcome the world, even if we don’t yet see it. You are in my heart and prayers, dear Cindy!