Do you have trouble defining what “normal” means for your family? Do you even feel like you have a “normal” family? Debbie, the subject of today’s interview, is working on that very subject herself!
Tell me a little about yourself and your family.
Shawn and I have been married for 11 years. Noah is almost 4 and
Addison is 2. We live in Indiana.
Tell me more about child disabilities. Did you know when
Addison was born that she had disabilities. If not, how did you
feel when you discovered it?
Addison has partial trisomy 9, a chromosome abnormality. We did not
have a prenatal diagnosis, and she went into respiratory distress upon
arrival.
As a result of the trisomy, she was born with craniosynostosis
(fused skull bones), and has had 2 cranial reconstructions to correct
that. She also has kidney reflux, hydronephrosis, severe sleep apnea,
acid reflux, breathing issues, strabismus, mid-face hypoplasia, and lots of ear issues.
She is g-tube dependent and just beginning to sit up without assistance. When we first discovered Addison’s disabilities, I was devastated. I’m a planner, and this journey was not in my plan. It took time and some grieving, but I now realize what an amazing blessing she is!
You blog a lot about Addison’s issues, and that is so valuable
to me and I’m sure, to others that read your blog. How did you go
about making the decision to blog about her? What do you personally
get out of blogging about her and her issues?
I have blogged in various forms about Addison since she was born. It
began as a way to document what we were learning, and as life has become more “normal” it’s emerged into a collection of pictures and stories about both kids, recipes, gripes about being a 4th grade teacher, and thoughts on being a Special Needs Mama. I think blogging has allowed me to feel more connected with other moms on similar journeys, and I think Addison’s story touches anyone who stumbles upon the blog.
How has Addison’s disabilities affected you as a
person and as a mother? What did you do right? What do you wish you had done differently?
Addison’s trisomy has changed every part of our lives. A complete
overhaul. I’m more patient and appreciate everything more now. We
celebrate the little things in life, and always try to focus on what’s
going well. I wish I had appreciated her newborn stage more, but 5
months in the NICU and PICU put us all in survival mode.
What do you want other parents to know?
I read in the early days on someone’s website that it would get easier.
And that I would find acceptance and dream new dreams and find a new
normal. It has for our family, and I hope other parents of kids with
special needs can find their new version of “normal”.
Make sure to visit Debbie’s Blog, Finding Normal!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.