A Little Bit of Ryan in My Life

I have been absent for awhile.  It has had to do with a number of things…moving, Ryan’s cancer, Shawn’s achievements, general busyness, a few depressing attempts to write, and the fact that I have not built up the audience I would like for this blog.  So I quit.  But I’m ready to start again.  We will see where it takes us.

Being the parent of a special needs child is difficult.  Being the parent of a child with a chronic life-threatening illness is difficult.  Being a single parent is difficult, and being a parent with anxiety, depression, PTSD and chronic pain is difficult.  Being all of the above at once…well, if there is a word to describe that, my picture will be under it.

I want to talk today about labels.  When someone asks me to describe Ryan, the first words out of my mouth usually have to do with either the Down Syndrome or the Leukemia.  If you ask the people in his life to describe him, they start out with a description of the child himself, minus the labels.  So I thought that today we could address why this happens.

It happens because parents of special needs children bear the brunt of the diagnoses.  We administer medication.  We sit in the doctor’s offices and hospitals.  We sit across the table form our child’s teachers and discuss our child’s disability and all the things they still can’t do.  We cart them to speech therapy and occupational therapy and counseling and physical therapy.  We push the wheelchair.  We feed through NG tubes.  We connect and disconnect IV lines.  We are entrenched.  Our daily lives revolve around our child’s needs. In my case, I can’t work, don’t have a social life, my only time with other adults is church or the hospital.

So when someone asks me about Ryan, I tell them the things that are second nature.  My answer might go like this:

Ryan is eleven.  He has Down Syndrome and Recurrent Leukemia.  His immune system is compromised, he has peripheral neuropathy and transfusional hemochromatosis and methotrexate induced leukoencephalopathy.  He has a substance induced (steroids being the substance) mood disorder and anxiety and ADHD.  By this time, the person who JUST WANTED AN IDEA OF WHAT TO GET RYAN FOR CHRISTMAS, FOR CRYING OUT LOUD , has tuned out.  Along with not knowing what 97% of those words mean, it wasn’t what they wanted to know anyway.

Instead, this is what I should be saying: Ryan is eleven.  He is the most loving child I have ever met.  He loves music and singing and dancing.  He loves to play basketball and soccer, and he is besotted with his dog.  He enjoys telling knock knock jokes and the fact that he has no idea what he is talking about just makes them funnier.  He likes to play animal sound guessing games when we are in the car for long periods of time.  He likes the Wiggles, Sesame Street, wrestling and Steve Harvey.  If you want a hug, he’s your guy.  Ryan blesses the lives of everyone he touches.

It’s hard for parents to see beyond the labels sometimes, hard to switch from just surviving to true enjoyment of all the wonderful things that make your child a treasure.

Don’t overlook that, y’all.  Don’t do what I do and present your child as simply a sum of diagnoses.  He or she is so, so much more than that!!!





One thought on “A Little Bit of Ryan in My Life

  1. I for one am glad you are continuing to blog. I am trying to get away from labels too. Keep on writing and fighting the good fight. You do have an audience.


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