Monthly Archives: March 2015

Maybe this will be the last post about getting my blog started. I have found there is no good time to be ready to blog.

If I’m going to blog, I just need to write, no matter what is happening in my life.

I took on a blogging challenge to work on my consistency and Grace got super sick for the last two weeks. She’s still sick with ear infections and other related cold symptoms. Actually, the whole family went down at one time or another with this stupid cold. It’s been a long two weeks.

When Grace is not sick, I spend much of my time helping Grace to have the best quality of life I can.

And when she is sick, I just can’t wait for her to get back to her “normal” self. A funny juxtaposition in my life.

When Grace is well, I research and learn ways to help her in all aspects of her life, from feeding issues to fine motor activities. When she is sick, I just cuddle her up and hope she feels better after giving her medicine or a steam bath for her congestion. I don’t do much research or follow up therapy activities while she is sick. Usually, Grace just wants to be held & read books together or listen to music. On occasion when she gets energy to play toys on the floor, she still wants me near her and she knows if I’m trying to sneak a peak at my smartphone or not. I get it, I want my mommy when I’m sick, too.

Grace’s “normal” is far from normal of a typical kid. The two-second spiel is that she doesn’t “walk, talk, or eat.” Of course, she has her own versions of all of those things. And there are lots of good things with her “normal” and there are lots of things I need to help her work on.

But, when ill, none of that matters. I just want to get her back to her healthy little self. It’s like we get a vacation from her disabilities, though not usually a fun one.

Today is my promised (to me) posting day and I am trying hard to get something worthy out by the end of the day. With Grace so sick I just didn’t focus on my writing, this past week. I kept waiting for the day she’d feel better. Now, guess how I’m getting this post done? Grace is at home with her dad and I’m sitting in the waiting room of a very busy Walk-in-clinic to be checked for possible pink eye. LOL!

Getting Rolling

Getting my blog rolling has been harder than I expected.

It’s time to make it a priority.

I constantly write down blog ideas but it’s the follow through that I have been lacking. I mention my beginning challenges of my blog because this is my real life and I hope to share lots with the readers of this blog. But, to do so, I must be honest. Sometimes blogs come out looking perfect- maybe one day my blog will come out looking perfect but if I don’t start, I’ll never know.

But we all start somewhere and it’s generally messy at first.

So it was with our children with special needs. There was no book to tell me how to proceed with their non-typical little lives. I had to muddle through, learn new terminology, create new ways to do things, find new people to help us, teach others how to help my kids, etc.

No child comes into this world with a “How-to” manual. Every new mom is given tons of advice, reads themselves silly through all the parenting books out there, and now a days, pins fabulous ideas for their “future children” on their Pinterest boards.

But, when you take that child home, with or without disabilities, there is a moment when you realize you are the expert on your specific child.

You know when he needs to eat, when she needs to sleep, when you just need to sit down and hold that newborn baby and not care at all about the outside world. You become the expert on her cries; this one for feeding, that one for a hug, & that one for a diaper change. Every parent becomes the expert on their own children. This expert is called a “parent.”

You never feel like you are the expert of your child. You feel unsure and unworthy of the role as the expert of your child.

But you do it anyway and you get through.

It might not be pretty but you get through it and one day, many years later, you realize you did have a role in raising that beautiful son or daughter.

As a parent of a child with special needs, you become not only a parent but the expert parent on all the disabilities, special needs, gestures, non-verbal communication, verbal communication, behaviors, wants, needs, food preferences, formula tolerances, and so much more.

You become the expert on your child.