Some of you have told me that I am handling this remarkably well.
Let me assure you that I am not.
Any evidence of faith on my part is because of God’s Spirit working in me.
This experience is THE single most painful thing I’ve ever experienced. Bad break-ups, moving cross country, losing a friend on 9/11, miscarriage, a premature baby, even becoming deathly ill myself–none of it comes close to how heavy this burden feels right now. It’s the ultimate punch to the stomach and I still haven’t caught my breath. Every time I’m about to, I get hit again. Our pastor told us that grief “sucker punches” and I think that describes the feeling well. You can’t prepare for it. There’s no way to ease the blow.
As a parent I instinctively want the best for my children. Nafe is going to struggle with some of the very basic things which we do to function as humans. The doctor’s words, Maybe he’ll walk. Maybe he’ll talk. keep ringing through my head.
The challenge is how to have hope in the midst of a terrifying reality of his syndrome.
I can’t fix my child.
I don’t get to hit a replay button.
There’s no way to make it go away.
Quite frankly, I don’t want this assignment. But I don’t get a different one.
Yesterday morning I could not escape what felt like God questioning me. Over and over I heard, What do you want Kathy? Really, what do you want.
I want a lot different. But in light of this new reality I want four big things.
First, I want the finances to care for Naffer without worrying where they come from and without placing a big burden on the rest of our family.
God’s Promise: “Consider the ravens: They do not sow or reap, they have no storeroom or barn, yet God feeds them. How much more valuable are you than the birds!” – Luke 12:24
Second, I don’t want be lonely when I get home. When all the doctors and nurses we’ve grown so attached to in the hospital aren’t there for us, I don’t want to feel forgotten by God and others.
God’s Promise: “I will never leave you and I will never abandon you.” -Hebrews 13:5
Third, I want to like my life. I want to want to get out of bed in the morning (for a reason other than a crying baby). I want to enjoy the same things in life that I did before. I want to look forward to the future. And I don’t want to be a stay-at-home mom forever.
God’s Promise: “For I know what I have planned for you,’ says the LORD. ‘I have plans to prosper you, not to harm you. I have plans to give you a future filled with hope.” – Jeremiah 29:11
Finally, I want to outlive my child. I want to know that he is loved and cared for in the very best way for his whole life long. Whether that’s by my husband and me or someone we declare over his care until he reaches the arms of Jesus, where ultimately all of us were created to be.
The answer to this one remains unseen.
But I do believe that God loves and cares for him more than I do.
Perhaps the best way for me to approach and handle this assignment is to openly receive it–even though I hate it–so I don’t miss all the ways that God will specifically provide “immeasurably more than all we ask or imagine, according to his power that is at work within us.” (Eph 3:20)
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!