So we’ve hit a hard patch. A season of life that seems to have brought lots of questions with few answers. And while I am mostly upbeat here on this blog…I’ve got to say…there are days (dare I say months) when parenting a child with special needs is daunting. It’s not always for the obvious reasons either. Yes, the daily/weekly therapies get old. The putting on and taking off and putting on and taking off of the orthotics, stretching casts, and shoe inserts makes me want to scream. There is the hip pain from carrying the 35 lb squirming toddler who screams “HOLD YOU!! I NO WALK!” whenever we are in public. And of course…the appointments with the pediatrician, neurologist, eye doctor, orthopedic surgeon, preschool coordinator, physical therapist, behaviorist, occupational therapist, speech pathologist, audiologist, and special ed teacher get old.
But what I’ve found to be most exhausting is the weariness of soul.
Oh, how I love this boy. Everyday when I wake up…I wish I could take some of his pain and hardship and carry the burden for him. I worry about his future. I wonder about all that is happening inside his little head. I worry that he won’t have friends, won’t learn to kick a ball, won’t be able to write his name. I worry he won’t find a wife, won’t have children of his own, won’t have a job that fulfills him. And I find myself weary in the wondering and worrying.
This is when I am thankful for a God who cares about every detail of my life. God knows Danny’s future and there is NOTHING that surprises Him. When we accepted the referral for a healthy infant boy. GOD KNEW. When we met Danny in person and our gut told us something was wrong. GOD KNEW. When we diagnosed Danny with brain damage and then Cerebral Palsy. GOD KNEW. When Danny took his first glorious steps. GOD KNEW. When Danny has had seizures. GOD KNEW. When Danny started to talk GOD KNEW. There are no surprises for God.
We’ve hit another hard patch. A new set of behaviors and circumstances that tell us that there is still more to Danny’s story. And while we hate to continue to pile diagnosis on his already very full chart…we know we have to pursue more testing so that he can be the happiest and healthiest little boy possible. So we spend our evenings sitting across from each other on our laptops researching and discussing. We pray for God to put the right people in our path to provide healing and help. We seek out the best professionals to provide opinions and help us wade through the vast amount of information.
And then we sit back and wait for the answers that we suspect are coming. And it’s ok. Because God won’t be surprised whatever the outcome. God created this little boy and he has a story to tell that is going to blow my mind. He’s got a plan and a future for this one that surpasses anything I could ever hope or dream for him. So…I’m determined to watch in anticipation at how he weaves this story. And when I become weary in the daily struggle, I’m going to remind myself. GOD KNOWS.