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.

One step Forward, Two Steps Back

I started this blog and actually published the first post and then my daughter breaks her arm. You’d think I could take her in, get it casted, give some medicine & love & after a few days, move on until cast removal day.
No not with my nonverbal child who may or may not understand what has happened.

The doc couldn’t cast due to the location of the fracture. But I’m supposed to keep Grace in a sling (notorious for not staying on) for 6 weeks. That’s been fun! Grace doesn’t understand that if she escapes the splint & tries to push her wheelchair, hr arm will ache later. It doesn’t always hurt right away.

The first week of the injury, Grace laid around in her bed with me by her side or sat in the rocker with me. She wanted my presence but just listened to music requesting kisses occasionally. If I tried to use my iPad she came up with a reason to need me or she wanted me to help her interact with her iPad. She knew when she had my full attention & when she didn’t. It’s like when she was a tiny baby & she was only comfortable if I was walking around with her. And that’s what I did for 8 hours a day back then, with some help from others.

Not until the third week after her injury have I realized how similar these 2 time periods were.

I have awesome friends who insisted on helping me by setting up “meals on wheels.” What a life saver. I didn’t know I had needed it. Sometimes I’m the last to understand the toll additional complications take on me.

Now, in the third week of recovery starting to pull my house back together, meal planning & shopping, even had a moment to get to Costco.  And now I can get back to focusing on some of the goals I have for Grace. I’ll go back to using PODD with Grace. Toileting will have to wait as I don’t have room to lift Grace from the side to put her on the seat. Usually I lift her from the front under her arms to place her on the seat.

It’s funny how when Grace gets uber-sick or like now when she broke her arm, all I want is to get her back to how she usually is- with all her developmental delays, feeding challenges & physical issues.

I spend so much time trying to help her develop that it is nice (but due to an unfortunate circumstance) to just want her back, as she usually is.  It’s like seeing another child with more severe issues than my Grace & being grateful for the issues I have to deal with. Then others see my Grace & are grateful they don’t have to deal with our issues but their own kid’s issues.
It’s a present moment reality check. And so as Grace gets better & takes another step forward in her toileting and communication goals, I’ll start again & move along my blog development goals, no matter how slowly that might be.

Getting Started

Leave a reply

We all started somewhere… actually go back even further. When I was a kid, I didn’t know anything about forestry (my future college major) or the name of Seattle’s major league baseball team. Heck I probably never even thought about Seattle.

In third grade, I visited Washington D.C. and thought I’d like to end up on the east coast not the west coast. And certainly not in Ecuador, South America for a couple of years in my early twenties. I couldn’t speak Spanish when I was young but did study German in high school. At that time I was still thinking I’d head east and onward to Europe, even.

I had heard about asthma but I didn’t know anyone that actually had it. I respected people with disabilities.

I just didn’t really know much about them.

Myself, I had scoliosis surgery but never considered it a disability and instead it was just excuses to get out of school and go out to lunch with mom after my mid-day orthopedic appointments.
I didn’t know children could have strokes and I definitely didn’t know they could have them in-utero, a word I learned after my first pregnancy.

I didn’t learn about mitochondria until my college biology class. And I never knew the real importance of those little itty-bitty mitochondria until I had my third child who has mitochondrial disease.

Now, I know Spanish and I love Seattle’s baseball team, the Mariners.

I also know words like left-hemiplegia, mitochondrial disease, gastronomy-tube, complex IV, genetics, prednisone, orthotics, gastroenterologist, neurologist, neuro-developmental, Apraxia, albuterol, occupational therapy, physical therapy, hippotherapy, therapeutic horseback riding, etc. I know wheelchair brands, youth diaper brands, youth formula brands, and even names of different types of syringes. I know what FRC, IEP, SLP, OT, PT, and an assortment of other acronyms mean.

I know all this and so much more because I am a mother to three awesome children,                        two who have disabilities.

This blog is my chance to share my world of being a parent of children with special needs with those in the world that want to learn more, need this kind of thing and for those that need to know they are not alone.

Being the parent to my three kids is an amazing experience I could never have dreamed of when I was just starting out in life. I know I never dreamed that one day after I met my wonderful husband that we could have three kids, two with special needs.

Nope, I didn’t dream that dream but I get to live it with one of the best little families (yep, I’m biased) in the world. By living this life, I have not only become an awesome mother (remember, biased, here) but I have also become an expert.

I am THE expert of each of my children with special needs.

And with this blog, I hope to show how parents of children with special needs are truly the best expert for their children.