Living with Cerebral Palsy

Description

Parents can't know what the future holds for their children, especially their kids with special needs. But they CAN trust that God has the whole world in His hands, and this includes every child and every need.

As we made a list of special needs we'd be open to in adoption, cerebral palsy (CP) - a group of neurological disorders that affect movement - wasn't on the list. We hadn't completely ruled it out, but we certainly hadn't ruled it in either.

But now? We can't imagine our lives without Zoe, and our love for her emboldens us to take on whatever else comes with her diagnosis.

For us, here's what that means:

  • MRIsto check brain development, particularly in the areas affected by PVL, her particular kind of brain damage. 
  • physical therapy twice a week. 
  • occupational therapy once a week. 
  • speech therapy once a week. 
  • check-ups with the neurologist and the physiatrist. 
  • fittings with the orthotist for leg braces and wrist splits. 
  • meetings with the early intervention program, which are now moving toward meetings with the school system as she nears age 3.
  • Botox injections (and possibly oral meds or surgeries in the future)

It means all that, but it also means:

  • celebrating when we found out that the hole in her heart had closed without medical intervention. 
  • celebrating evaluations that show less impairments than expected. 
  • celebrating the first time she feeds herself at age 15 months.
  • celebrating when she sits - sort of - on her own at age 17 months. 
  • celebrating when her gait trainer helps her take her first stilted steps at age 2. 
  • celebrating as we realize how much God has refined us through the privilege of parenting her. 
  • celebrating as I find my voice in advocating for her when a well-known Christian talks on TV about weird adopted kids who could have brain damage.

 We still don't know what the future holds for Zoe: if she'll ever live independently. if she'll continue to keep up with her peers in cognitive ability. if she'll walk. if she'll maim other children by plowing them down with her gait trainer.

You know, things like that.

But, if we're honest about our helplessness and God's sovereignty, we have to admit that we don't know what the future holds for Jocelyn or Patience or Philip or Robbie or Patricia either.

It might sound childish, but we still believe the words of the song we learned as kids. We trust that He holds the whole world - including our whole family and Zoe's whole brain, just as he shaped it - in His hands.

For that, we are thankful.

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