Loving and Still Yearning - An Interview with WriterGrrl

I 'met' the subject of today's interview when she left a comment on my post about Floortime. I visited her website, and as I left in an email to her, I fell in love with her family and her writing. I bet you will also! Meet WRITERGRRL…and don't forget to also visit her blog, You Get What You Get, the place where she writes about the "soap opera that is my life."

Tell me a little about yourself and your family.

My husband and I have four children, and we live (as was recently revealed on my blog) in Houston, TX. My daughters are 9 and almost 8, and my sons are 5 and almost 3. We are a Modern Orthodox Jewish family, which is pretty readily apparent from my writing.

Tell me more about D's disabilities. Did you know when he was born that he had disabilities? If not, how did you feel when you discovered it?

D. has Sotos syndrome, a rare genetic overgrowth syndrome. An overgrowth syndrome means that he is larger than he should be for his age, so at 5 years old, he's about the same height as my 9-year-old and wears size 10-12 clothes.

A common mistake people make is to confuse genetic with hereditary. D. didn't inherit this syndrome from us; his DNA mutated at conception. That mutation gives him his size and also gives him many developmental delays (most prominently speech and social delays), low muscle tone, and a higher risk for other medical problems including certain tumors and seizures.

D. was diagnosed just after he turned two years old, when our youngest son was just three weeks old, and we were devastated. The diagnosis with it carried such a feeling of permanence. It was terrifying. We've come a long way in three years.

You blog a lot about your D'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 him? What do you personally get out of blogging about him and his issues?

I came home from the appointment when D. got his diagnosis, and I needed to do something. I am a professional writer, so writing is how I deal with most things in my life. I had blogged in the past for family and friends, but this time I needed a place where I could say things I didn't necessarily want to share with those people. So I started a new blog that day.

Blogging about D., particularly in a space that feels "safe," is a way to get the bad stuff out so that I can function like a normal person in the world most of the rest of the time. On the dark days, it keeps me sane. I also hope that my blog is useful for other parents getting a diagnosis of Sotos syndrome and not knowing what to expect or where to go. I hope I'm a resource.

How have D's disabilities affected you as a person and as a mother? What did you do right? What do you wish you had done differently?

D's disabilities have changed everything about me. Everything. I am a fundamentally different person from who I was before. What did I do right? Depends on the day. Sometimes I feel great about our choices and what we do. Other times I wish I had done everything differently.

Specifically, I desperately wish I had gotten D. into a true special needs program from age 2 or 3. But I didn't, and looking back won't change anything. We have to move forward from where we are.

What would you like other parents to know?

I think it's critical to recognize that you need help to raise a child with special needs. No one can do it alone, so accept help when it's offered. But with that, bear in mind that NO ONE cares about your kid as much as you do. That is a terribly painful thing to realize, but it is sadly true.

Is there anything else you would like to share?

One of the things that's been hardest for me to acknowledge is that you can love your child with every fiber of your being and still yearn for a different reality. Once you accept your own humanity that way, you can feel a lot better about yourself.

Well said, WriterGrrl, well said…

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.