The subject of today’s interview was inspired by a Charles Dickens quote. I, for one, am very thankful for that inspiration because it has brought Kristen and her blog, No Small Thing, into our family of bloggers!
Tell me a little about yourself and your family.
My name is Kristen, and I am David’s wife. I am mommy to Kate (7—almost 8!), William (6.5), Henry (4.5) and Ella (1.25) . David and I “grew up” together…we’ve been together for over 20 years now, more than half our lives. I am a SAHM, and right now, I am living my dream life. I just didn’t know it would be so challenging, and so very profoundly beautiful.
Tell me more about child’s disabilities. Did you know when he was born that he had disabilities. If not, how did you feel when you discovered it?
Henry has severe sensorineural hearing loss bilaterally. He also has been diagnosed as having a neuropathic component to his hearing problems (Auditory Neuropathy, or AN).
We did not know about his hearing problems when he was born. Virginia has mandatory hearing screenings at birth. He passed. We had no idea there was a problem until his language failed to progress. When Henry didn’t appear to recognize his name at 18 months, I was concerned and began “testing” him with noises.
How did I feel when I found out? In a word…Crushed. Or maybe…Trampled. Or…Alone. Then there was Angry. And Sad. And Hopeful. And Proud. And so began our journey…
How have your son’s disabilities affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
As a person, I am much less quick to judge a child’s behavior (or a parent’s response to that behavior).
Oh, and I’ve learned to take help from friends. I tried, boy did I try, to do it all myself. But I got to a point where I realized that I just couldn’t handle it all anymore. I needed people.
As far as what I’ve done right…I think the jury is still out on that! I wish I had followed my instincts that something was wrong with the language development a lot sooner.
And I could (still) have more patience.
What do you want other parents fighting the same fight to know?
I would encourage you to follow your instincts. Of course you want to seek out opinions from experts, but you must also learn to think of yourself as an important piece of the “expert puzzle.” Without you, the puzzle is incomplete.
Is there anything else you would like to share?
I think we have to remember that those of us that have a child with a disability have been given a true gift. It is sometimes hard to see it that way, when your child is in pain, or is suffering in some way.
But we will never take for granted a child’s first steps, or a child’s first word, or a smile, or the feeling of our baby’s breath on our necks. We will recognize that learning to read, or skip or ride a bicycle is a triumph.
We will never forget that each new day with our children is a miracle.
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.