Life in a Flash » capturing life one moment at a time.

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diagnosis. again.

Sometimes I look at my sweet little boy and wonder why he has so many things stacked up in front of him.  Why does he have to endure so many obstacles when other kids get to run carefree?  Why did God give him a lifetime worth of hardships to wade through?  What’s His purpose?  And while I can’t answer those questions…I can say with surety…God has a plan.

I don’t know if you’ve ever “known” something about your child that wasn’t yet confirmed.  But we’ve been going off of some suspicions with Danny for the past year.  We first started noticing some different behaviors that seemed new and somewhat odd last summer.  We did our best to curb the behaviors and work through them as a family.  When we reached the end of our ability, we reached out for help with a behavioral therapist.   And when things continued to worsen…we decided that we could no longer ignore the signs.

I’ve always told others that I’m not really a fan of labeling kids.  Kids are different…each one of them.  And they have quirks, and weird behaviors, likes and dislikes, and challenges…every last one of them.  When we diagnosed Danny with the Periventricular Leukomalacia (brain damage) and Cerebral Palsy that was more than enough diagnosis for one little boy.  So, we quickly made the decision that we would not seek out any other diagnosis.  All of his behaviors could easily be explained with those fancy diagnostic terms.  But we have begun to realize that labels aren’t the end of the world.  And sometimes identifying a problem opens the door for life-giving help.

That’s the door we decided to open a few months ago when we made the appointments to have Danny screened for autism.

We knew the diagnosis before the psychologist seated us on her red microfiber couch.  My palms were already sweating and I was scanning her face for clues that would confirm my suspicions…knowing all along that we already had our answer.  Nothing had changed.  Everything had changed.  She talked to us about his strengths and weaknesses.  She told us everything we already knew and had seen and added to our list of growing concerns.  She asked us to fill out more forms and to come back for more help.  And then we left and walked out into the drizzling rain and stared at each other for a minute in disbelief and knowing all wrapped up in one.

Danny is the same amazing overcomer today that he was yesterday.  He hasn’t changed.  And neither has God.

I don’t know where we will go from here.  So I guess we will just sit back and watch God do His thing….waiting in anticipation for the way He chooses to bring himself glory through the life of our little boy.

We would so appreciate prayers as we navigate research and new therapies and adjustments at home to help our sweet boy!

{tuckered out after a long, stressful day}

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I wouldn’t trade one moment of being “mommy” to this boy.  He has taught me so much about God’s grace, compassion, and enduring love.   And I truly believe that God gave him some special gifts as well…a contagious smile and personality that lures people into his story and life.  We are watching and waiting too…to see what God has planned for this little one!

April 3, 2014 - 9:43 pm

Ta - Precious Danny! Praying in Colorado

April 3, 2014 - 10:47 pm

Paula Spears - He’s such a wonderful little boy…you will all make it together. Praying for you.

April 4, 2014 - 8:20 am

lisa - What a beautiful post. God is an Amazing God and He does have a special plan for that little guy–along with your whole family. Jenn, continue to see God through this all and know that you are never alone. You are such an inspiration to everyone around you. Keep smiling and loving that family. We are praying for peace, comfort, and strength.

April 4, 2014 - 9:26 am

Angie Lunetta - I just need to say that every time I read your blog, I am awed by your faith. To deal with such a magnitude of struggles with grace and even praise. I admire you as a mother even though I am not even around to see it. Thank you for being an inspiration to me.

April 4, 2014 - 9:11 pm

Amy - Danny is blessed to have you as his Mom. I worked as an ABA therapist in college. When I took some time off from my teaching career, I worked as an early interventionist and worked with families as they received the autism diagnosis. I can not imagine how heartbreaking it is to hear but Danny has not changed because of the label. He is thriving and will continue to with your support and God’s. I am praying for him (and your family) and know that God does indeed have a plan.
Thank you so much for your blog! I have followed you for 2 years and have so enjoyed seeing your family grow and blossom.

April 6, 2014 - 12:25 am

Lessie Cooper - He is such a bright spot in so many lives… we love you guys.

April 6, 2014 - 12:02 pm

Joy Lenz - I love your attitude about Danny and your comment that HE has not changed. I spent part of the weekend with your sister and I told her that I have been folowing your family and praying for you, especially for Danny, for years. My prayers will continue!

April 11, 2014 - 10:34 pm

Tara - He’s precious! Praying for him and your family, we have many diagnosis over here

April 16, 2014 - 7:51 am

Jane - I thought I left a comment on here the other day, but it doesn’t seem to have worked. I don’t know you Jenn, but I have read your blog for many years and have loved watching your children grow and the adventures your family has gone on together.

I have kept coming back to this post and when I read the first line of this post, I was struck today by a thought.

It was an image of God stacking up good things, like a tower of kids wooden blocks, n Danny’s corner – God himself, his family, the wonderful care he has access to etc etc. I know that this doesn’t ‘balance’ out the obstacles, but it was as though it was a reminder that God is fully aware of all of these obstacles and that he is right there with Danny and with you as he faces them all. AND that he has stacked up a whole bunch of things to counteract and to enable him to face and overcome these obstacles.

Gosh I hope this isn’t weird, I’ve just realised that it’s a strange message to send to someone I don’t even know!

September 7, 2015 - 12:59 am

Tricia - http://theelishafoundation.com/ helps families find resources and provides support to familes with children with disabilities. They do amazing things!! Bless you for adopting those sweet kids!

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