Friday, March 28, 2014

All The Expertise I Never Wanted

Cut off from every avenue of escape, God has fenced me in
    and tied me up with heavy chains.
~ Lamentations 3:7, VOICE ~

Have you ever noticed that our children's diagnoses are rarely, if ever, a single disorder or diff-ability?  You may start out with one main challenge being labeled and treated, but it doesn't end there.  Added complications can later surface.  "Comorbidity" is a term experts use to describe diagnoses that often occur together, such as Down Syndrome and vision challenges, or Sensory Processing Disorder and Autism.

It seems we are in a weighty process of becoming reluctant experts.  There is this intense learning curve of becoming familiar with your child's diagnosis, knowing what their baseline looks like, discovering how to identify if something is wrong, and frankly, becoming somewhat confident in living with this in your home as your family's "new normal".

As I have frequently been known to tell parents we serve, 

Just when you think you have it figured out, you don't have it figured out!

There are times when I feel like I am imprisoned in the school of special needs parenthood with a dreadful life sentence.  It becomes traumatic, never being allowed to let your guard down, continually having to filter and process information, attempting to make impactful, wise decisions for your child in ever-changing situations.

This is one of those weeks for me.  As I was standing at the desk to check our eldest daughter in for her visit to the rheumatology clinic, my phone rang with the school phone number menacingly appearing on the screen.  The district nurse identified herself when I answered, telling me that our youngest daughter had been injured on a piece of playground equipment and was showing signs of a concussion.  Since I was at the Children's Hospital 30 miles away, my husband had to leave work to take her to the local emergency room near our home.  By the time my eldest had completed her appointment and we reached the other hospital's ER, the doctor had ordered a head CT and was contacting our pediatrician.  

Things have become a bit more complicated for our youngest daughter over the last year.  Through a number of situations, including a surgical procedure and the loss of a tooth, she is showing all of the signs of being a "symptomatic carrier" for hemophilia.  Head trauma is one of the most dangerous injuries to a person with a bleeding disorder.  This certainly added another stressful dynamic to her injury.

Long story short, while her head CT came back fine, she has spent the remainder of the week suffering terribly from a concussion and all its effects.  

So, once again I find myself facing yet another learning curve, gaining expertise I never wanted.  Namely, 

How in the WORLD do I deprive a kid with severe ADHD, SPD, and Asperger's of physical activity, electronics, TV and reading until her brain heals?

Despite a day of coloring, crafts, a bubble bath, tangrams, and other quiet activities, she went over the edge by evening.  This is going to be a long, painful healing process!


While the undergoing isn't fun, at least I know I have a Savior who has been weighed down in similar ways, and even worse.  During his earthly walk, Jesus gained expertise on living in poverty, being abandoned by those closest to him, and in serving the hearts of so many broken, needy people.  It wasn't easy, and it wasn't always fun, but he pushed on in the strength of the Spirit with an eternal vision.

How grateful I can be that when He went home to heaven, He left that same power of the Holy Spirit with me, and with every other parent who struggles.  

Yes, I never wanted all this expertise, but I know I have a God who understands and who has good purposes for entrusting me with the experiences He gives.

PRAY:  Father, I don't want to know more about symptoms, behaviors, and treatments.  Thank You for understanding me, and guiding me through such weighty, brain-bending life experiences.

~ Barb Dittrich

Photo image courtesy of mihtiander via 123rf.com

2 comments:

  1. First off: "diff-ability"? Please. Can we dispense with the stupid politically correct double-talk and just admit that some children are handicapped?

    On to the main point: I like to say about myself that I am not an expert, but I play one in real life. When my daughter Namine was born, I was reluctant. I was scared. But as Namine has grown, I too have grown -- more comfortable not only with her abilities and limitations, but also with her medical needs and care. I was timid at first, but I am afraid no longer, among the loudest of her advocates.

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    1. I'm sorry, Paul, but I love calling my daughter's challenges "diff-abilities". While she has deficits in some things, she is remarkable and gifted in other ways. That word choice by me has nothing to do with political correctness. It has everything to do with the way my unique child is "fearfully and wonderfully made".

      Very glad to hear of your confidence growing in both care and advocacy. That is one of the most gratifying parts of parenting kids like ours.

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