Simple things like getting in the van for a ride to the mountains, simple? Not. Fear rises from the youngest members that our child with special needs might get upset and lash out or pull hair. Even though she thrives at visiting with strangers at Barnes & Noble, even little ones. Why? Struggles to make plans and because the crowds are large and the terrain not conducive to pushing her wheelchair are larger than our "will" to try. All the efforts to be normal....take hikes thinking Scott might have a heart attack carrying her up a mountain. It sure gives more visual meaning to the friends who take time to carry their friend through the rooftop just to see Jesus.
It's exhausting to be our friends at times. We know. Yet as my friend says "why can't we just be normal?" Why are health bills what create bankruptcy and loss of hope? Why is it that the American dream costs $130,000/year and what tiny percentage have that yearly? The dream I guess is for a few. Most of us walk hoping to not fall. Even the wealthy without Jesus can't see beyond the endless ambition for more or the despairing of hopelessness midst money...a friend who suffers not financially said "money doesn't create happiness, but it eases a burden that those who spend their time and energy worried about keeping electricity on and food at the table have to bear."
We are the same. Created for the pleasure of Christ. Yet we continually find ourselves disappointed that packing up for a camp for special needs may come to a halt because sickness prevails or lack of money or increased physical pain seems to be the mountains that interfere. And we scream "normalcy!" We exhaust our ability to dream; feeling overwhelmed that something as simple as jumping in the car, isn't simple at all. Not to state the obvious, camp for special needs isn't normal at all. This is our vacation.
We are inundated with images of living the high life...sailing through the ocean. Even though others do suffer, often the voices we hear are "well you can't leave her at home. there is always next year for your trip...as 'they' leave for their vacation".
It's not that we would hold back vacations or prosperity from others; it's that most of us want to be heard. We know for goodness sake that our community can't hold the keys to salvation, that's the lords. We don't expect YOU to fix it; but allow us to be angry or be present with us. Don't judge us for our unbelief. Believe more beside us when our belief is just dwindling.
We prepare to go to family camp this week. A spot for 5 days where we the same. Our Normal is breaking bread with cafeteria food, singing and crying together, feeding tubes, diapering, trying to find respite, attempting to make life similar. There's comfort in that community, not enabling. The solutions aren't what we seek, those are mostly miraculous. We seek comfort, ease, help, quiet, some similarity and no worries of criticism of those around us. No worries if we stand, sit, clap at worship. No worries if we have to pace- it's not disrespectful. It's where we are permitted to hear. To worship. To question without fear or looking like "bad" parents or whatever the social norms scream.
My family is ready and excited for the week. My heart is heavy for friends around who are weighted with dispair. That god will provide and give them forum to be normal. If you can't relate, you can be present. You can influence the institution to show kindness, love trumping law, service because Jesus models being a servant...washing the dirtiest of feet, reclining with the lowliest, turning to the most insignificant woman who touched his garment. She offered him nothing, didn't tithe. Just desired to touch him. And what did she receive? Healing, because that's what He is. For the least of these.
Love. This. And we're way better than a cruise line: we don't make you dress up to enter our dining room!
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