In my case, my challenge is really my daughter's challenge. We will always be heavily involved in her care though -- the likelihood of her becoming completely independent is small. She is very smart, but very physically limited. I'd be ecstatic if she proved me wrong, and I hope she has the type of stick-to-it-iveness that says, "You may think I can't do ___, but I'll show you!" However, as a parent, even if she is physically more independent in the future, I'll always be watching and monitoring and evaluating her health and medical situation. It's a mom thing, plus her health is so complex and so easily affected by small things.
So we're looking at a long road with Elli, and we've already been quite a ways down that road. It's downright terrifying at points, though we certainly have great times and beautiful experiences.
Now we're waiting for the arrival of another child with known medical issues. His may not end up nearly as complicated or as limited as Elli's (and we pray they don't). But we do know that he'll need to be monitored his entire life. We've met some parents of children born with his cardiac defect, and many of those kids live totally normal lives with no restrictions. But others have significant restrictions and ongoing concerns. We'll know soon which way our road with him will lean, but either way, it's going to be added weight to our shoulders.
So... I happened to be on the Desiring God website last week, when I spotted this in the lower right corner.

I was immediately intrigued. Endurance as a topic for a conference? This sounds like something I could really use.

Here's part of the invitation to attend. It almost makes me drool with anticipation:
Our hope is that God would use this conference as one small means to make rugged endurance in the hard path of obedience a beautiful and longed-for virtue among our vacillating generation. Younger people today think of changing, leaving, shifting, moving, modifying, and swapping in order to enhance life—almost anything but enduring. People quit. They move. They change their minds. A long, hard, steady, hold-the-course obedience is a rare and wonderful thing.
We would love to elevate the virtue of perseverance. We treasure the phrase “steadfast, immovable, always abounding in the work of the Lord” (1 Corinthians 15:58). Can you dream with us that perseverance and constancy and patience and fortitude and courage and covenant-keeping would become dominant virtues among God’s people in decades to come?
[section describing each speaker]
You can see the plan. Four spheres of faithfulness: the pastorate, faithfulness and holiness through suffering and loss, radical obedience in the culture wars, and world missions. We are praying that God will use these faithful witnesses to awaken and solidify rugged, Christ-exalting endurance in the people who attend the conference.
If you long to stand firm to the end and would like help, we hope you will come. If you see what seems like insurmountable obstacles in front of you, we hope you come. If someone you love is ready to walk away from the path of obedience, we hope you find help here for how to minister. And if you dream with us about a Christian culture-shift from short-lived experiments to life-long commitments, we hope you will pray for God’s blessing on this effort.
Wow. This really fits where I'm at spiritually right now. So Scott and I are praying that God would somehow make it possible for us to get to this conference. I have no idea how it can happen since it's just a little more than 2 months and a long day's drive away. The birth of a baby and final diagnosis of his situation also sits between now and then. But if He wants us to go, He'll make a way.
And if not, Desiringgod.org will probably podcast the sessions afterward. They've done this with many of their recent conferences. Maybe we can create our own little mini-retreat every evening for a week while we listen to the speakers after the kids go to bed!