We met a woman today and I’ve been thinking about her all day.
Jim and I drove across the state today to pick up a piece of medical equipment that Jamie bought to use with Ben. A hoist. I could go on about how difficult it is to think that we will soon need to use a hoist to lift our three year old grandson. That lifting him (for example, in and out of the tub) is becoming difficult and dangerous, both for Ben and the lifter (who is his mom 99.9% of the time). And unfortunately, this hoist won’t fit in our small bathroom, but it will soon be needed in other situations, nevertheless, and was being sold cheap enough for Jamie to afford and to make it worth the drive to pick it up.
Back to the woman who was selling the hoist. As is the case with many parents of children with special needs, she had a story to tell and she told us a bit about her journey. She has five children and three of them have special needs. Three of them. I won’t tell her story because of course, it’s not my story to tell. I will say that she has way more than a full plate right now. She didn’t tell us in a complaining way, just as a matter of fact.
In the past, when I’ve gone through difficult times, Jim always reminded me that it could be worse. I think of that often now. I thought of it a lot this past winter because it was a very difficult one for my family. When we left this woman today, I thought of how it is truly worse for this woman than for us…many times over.
People have often praised Jamie and us for what we do, but we honestly are just doing what needs to be done. There’s no choice. Whatever comes up, we deal with it. There’s no choice. It’s the same with this woman. Her journey right now is difficult piled on top of difficult piled on top of difficult. She has no choice but to deal with it and hope things go back to what’s normal for her family (which is still difficult).
It’s part of life. It could be worse. It will probably be worse. And we just live it a day at a time. And feel blessed because you can’t imagine it any other way. Even though you still wish it could be easier.
Is it so bad to want to simply my life as much as my life will allow? I don’t think so. I’m going to revisit ways I’m simplifying my life now and then, but to keep my entries from being long and drawn out…I’ll try to keep it simple. Focus on one topic at a time.
I love to read, but have found that I just can’t stay focused on the read-to-learn type of books that I’d always loved so much. I’ve decided that any reading is better than no reading, so I’ve taken to reading books that don’t require much effort on my part. Ones that I’ll still enjoy though (will take any suggestions anyone has to offer). Taking the advice of a nurse that Ben sees, I’ve read my first John Grisham novel and also one by Nicholas Sparks (I don’t think I’ve read any by him either). I’m trying to sneak some learnin’ materials in there too, but I feel better just reading. It’s exercise for my brain no matter how simple.
So, we bought this bike for Ben last Easter. It has a high back with a headrest and shoulder harness so he could be strapped in, but it didn’t work at all. He had no head and trunk control and it was hard to get his feet to stay on the foot plate, even if we strapped them on and the seat is at an angle making it harder to position him. It was just uncomfortable and not fun at all. Sadly, we put the bike away.
Fast forward to almost a year and a half later. Ben is working so hard on his head and trunk control and his legs are long enough for his feet to reach the pedals. Maybe, with some brainstorming, the bike will work. Having that pedal action will greatly complement all the work that is going into teaching his brain and body to make the walking motion. So out the bike comes once again. This boy has grown a ton in a year. His head doesn’t fit on the headrest anymore. His momma brainstorms and tries some things out and we get this:
So, add a go to seat which Ben has had since he was a baby. It wasn’t working for him for a while and now he’s pretty much grown out of it. It cost (I think) $200-$300. It’s a two person job to hold him in and buckle him. Thankfully, the collar was covered by insurance as are his AFOs (leg braces). She coban taped his hands and feet to the handlebars and pedals. Then we discover that the pedals only move if he pedals them, which of course he’s not able to do at this time. That kind of defeats the purpose of the whole thing, but he did really seem to enjoy riding his bike though.
Now we begin the process of saving for (the cost will be over $2000) and finding a special bike for Ben.
I never thought to appreciate the few dollars we had to spend on bikes for our kids and the fact that, with a little learning, they were able to hop on and ride. It takes so much time and effort to help Ben enjoy these simple childhood pleasures. And the fact that you add the words “special needs” to the title of anything adds so much to the prices that it’s often way out of our price range.
Appreciate the simple pleasures, even those that aren’t so simple.
When I first considered bringing my blog back to life, I looked at the title and thought that my life is anything but simple these days.
It got me thinking.
Really, I AM the same person who loves to leads a sweet simple life. It’s just not the sweet simple life I envisioned.
It’s better! Sure, I have so many more worries and I cry more and I’m in a constant state of stress, but I am so so blessed! So, yes, my blog remains “The Sweet Simple Things”. It fit me four or so years ago when I moved my blog here to WordPress and changed the name and it fits me now, only in a different way. Many things have changed in the past few years, but who I am has only changed in that I always strive to become a better version of myself and I believe I have through all that Benjamin has taught me (and that’s another blog post for another time!).
I really am working to make this as simple and stress free as possible or else I will put off writing. So, truly I am going to start writing this as if it were my journal most of the time. I will probably insert photos less often than I used to unless I can find a simple way to do it (including watermarking as I don’t want them stolen). What may happen is that my blog post titles may become dates, as if they were journal entries. I do reserve the right to stray every now and then though!
Anyhow, it’s Monday and I had a busy weekend so housework and laundry and business bookwork have kept me busy all day. I’m always at least 25 steps behind being caught up. Story of my life.
I’ll put on a happy face. I know that I’m so very blessed that my children have the most wonderful father and that my grandson has such an awesome Papa and for that I couldn’t be more thankful.
But still…my father and father-in-law are missed. No words. Just an emptiness.
My title is what it is because I keep thinking it’s Friday. Nope. It’s Thursday. Edited to add: Criminy! Check to see what blog you’re on before you post something! I need to get used to this again. I posted this on my antique photo blog without realizing it.
I’d like to thank everyone for their feedback on my last (first in a long time) post. When I published that post, I’d forgotten that my blog posts automatically get shared on my Facebook. I really don’t have any problem with anyone seeking a counselor. Not at all! For me, at this time, writing just works better. I don’t have a lot of free time and I can write whenever I need to or the urge strikes me. And don’t worry about me. I’m okay.
And it won’t always be about Mr. Ben. Although most of the time he is my main topic of any conversation. 😉
So business is busy right now and although my job in the business is part time, it’s doesn’t have set hours. I was working on the computer with Jim this morning before I’d even gotten dressed for the day. Lucky no one stopped by! Quite often computer work is done when Jim and I have a bit of time together since it usually requires both of us, his information and my computer abilities.
So, I’m going to throw something out there. Does anyone have anything they’d like to know? Shoot me a question and I’ll do my best to answer. Not that my life is so interesting, but you never know what someone is curious about. Sometimes I’m curious about something that I don’t feel comfortable asking. Anyhow. Ask away.
That’s me! I’ve come a long way!