Thursday, September 17, 2015

Being a Caregiver

I'm a caregiver. It's a specific role/title I was just made aware of but one I've held for a long time.

I'm going to be exploring the role of caregiver because while it may seem like a simple thing

"Hey, I take care of people!"

let me tell you, it isn't.

Caregiving is a full time job and it involves all my energy, will power, imagination, and thought. Caregiving is a rewarding life, but it is the hardest thing I've ever done.

As I said, I've always been a caregiver. From scratching the boy who insulted my sister's name to making sure my college age sister charged her cell phone every night and took it with her every day, to clearing a path to each door so my family could escape the house in case of a fire... those were just when I was a child and teenager.

Now as an adult, I'm a caregiver to a husband and two special needs kids. My husband might react to the statement that I'm his caregiver, but it's true.  I take care of him like no one else can. I support him emotionally, physically (he has cerebral palsy), mentally, and I drive him places. Supporting a husband who deals with depression and anxiety is hard work.

I'm also the caregiver to a son with mental health issues and brain damage. He is in 3rd grade and is close to being a fluent reader. I hope. He hid a knife in his bathroom the other day to protect himself from bad guys. He worries about everything. It's a lot of work to keep him safe and to stay ahead of his mental needs.

I'm also the caregiver to Ilse, our four year old daughter with Smith-Lemli-Opitz. She requires total care- diapering, tube feeding, dressing, everything. She might always require total care.

As I consider what the role of caregiver means for me, I'm also going to be considering how best to take care of myself, too. I grew up thinking the caregiver had to work constantly and never take 'me time'. I don't know who made me think that but it's not correct. If the caregiver does not have respite, she will wither up and will not be able to take care of anyway. Even Jesus took time away.

These are just my beginning thoughts.
Stay tuned.

Thursday, August 13, 2015


Tomorrow my Chris is getting his tonsils out and new ear tubes put in, and a sinus endoscopy, why the endoscopy I don't know.  He is nervous and I am nervous.  He's nervous because he's a child, and I am nervous because I am not a child, and I know that I'm going to have to be the one to deal with getting him calmed down when he wakes up.  When he got his adenoids out he was combative upon waking up; the anesthesiologist thinks it was because of the Versed.  So tomorrow we are doing no Versed, which means he will be awake and sober as he goes back to the OR sans his mom.  I'm hoping he will keep it together.  Chris has great self control, but he is still only 8 and he can be pretty agitated when he is afraid.

I'm hoping they let us stay long enough after he wakes up for me to feel safe driving home with him. After Joey's endoscopy we left so fast that I almost had to pull over on the way home to let Joey wake up more since he was all over the place in his seat.  This is a different locale, so hopefully we'll have better luck.  There's that fine line between leaving too early and being forced to stay in recovery way too long.  Hopefully we can walk that line perfectly tomorrow.  The last thing I'd like to do is hang around for an hour or more in recovery when both Chris and I would rather recover at home.

And I'm doing tomorrow without Starbucks.  It's been a month probably since I broke my Starbucks habit.  God broke it really, of course, but I'm still giving myself a big pat on the back because I know what a major accomplishment it was.  :)

Saturday, August 8, 2015


Today we went to Best Buy and got Ilse her new talker.  It's name is 'Talkie' and it's a dedicated-to-Ilse item.  I'm excited about it.  I've got her apps on it and I reconfigured her Speak 4 Yourself so that she has more words to explore.

Sadly, the available voices sound older than Ilse, and they aren't VERY loud.  But that is just something we are going to have to deal with.

Now Tim and I need to get into the habit of modeling and helping her talk with Talkie.

I also need to remember to take it everywhere Ilse goes.  We all take our voices with us, so Ilse should get to, too.

Friday, August 7, 2015

Another Thought on Ilse's Voice

I read a thought provoking article the other day regarding AAC (Augmentative and Alternative Communication).  Here it is, if you are interested.  I think you should be interested if you know me, because if you are fully informed you can help us with Ilse's communication.

I said in my previous post that Ilse didn't seem to be very interested in communicating.

But what if I'm wrong?

What if Ilse is frustrated because she can't tell me things?  What if she wants to say 'I love you' to her brothers?

That is not a risk I'm willing to take.

So I'm going to make another push with Ilse's talker.  I'm going to buy her a new iPad so that we won't have to wrestle with the sound not working, and we're going to start modeling speech, all the time.  I want to see her reach for that 'more' button and then add on to it.  Tonight she was saying 'mo mo' over and over in the car, but I don't know what she wanted more of.  If she could/would use her talker, then I would be able to give her what she is asking for.

As I model I'm going to make her touch the buttons so she will learn where they are.

I need to hear 'I love you, Mom.'

Monday, August 3, 2015

A Voice

Ilse is four now.  Usually by four kids are nearly fluent in their native language.  They can ask for things and tell their parents what happened to them when their parents were out of sight.  All too often four year olds tell things their parents wish could have stayed secret, like the time my parents were 'having a discussion' and my dad saw the neighbor walking by and said, "oh, I hope he doesn't come over right now" and I ran right out the door and told that to our neighbor. 

When our boys came to live with us they were both three and neither could really talk.  Chris knew how to say 'no' and he used that word all. the. time.  Joey could say a few things but even those things were hard to understand.  I didn't really have to teach Chris to talk.  He just picked it up.  But it was a hard job to teach Joey, and I'm still teaching him to this day. 

But Ilse is four.  I don't feel like it's completely accurate to say she's noverbal, although that's what I wrote on her medical alert bracelet.  But her functional language is nearly zilch.  She can say "mo mo?" for more and she signs it.  She signs fan.  She says 'uhhh' for up and 'yesh' for yes as she does a fist pump.  That one is pretty cute.  She says a few phrases over and over, especially when she is upset, but they are unintelligible. 

But she cannot tell me what is wrong when something happens to her.  She cannot tell me what hurts.  She cannot tell me if she feels safe with various people or if they take good care of her when I am gone.  She cannot tell me if I am about to forget her in the car.  She cannot tell me if she prefers her bed by the window or if she likes it where it was before. 

About a year ago I bought Ilse an app called "Speak For Yourself'.  It is arguably the best speech app out there.  The whole vocabulary (14000 words) can be accessed by no more than two touches per word.  It's easy to navigate and it works on the ipad, so we didn't have to buy an expensive device to give Ilse a voice. 

The problem is, Ilse shows no interest.  She doesn't care to type on it and hear the words.  She doesn't remember where 'more' is and make a move to press it. 

Ilse deserves a voice but I don't know how to give her one.  I want to hear 'mama' from her even if it is from a talker.  I want her to say "I love you" somehow. 

So many mommas want the same things I do.  So many of them will never get it, either through their kids' inability to communicate, or through poverty, or because the kids just aren't motivated to communicate.  I hope I won't be one of the mommas who will never hear 'I love you' from my child. 

I love her beautiful sounds.  She has a lovely voice.  I just want it to be more functional.

Tuesday, July 28, 2015

Simplicity during the school year

Yes, I'm all about simplicity these days.  Simplicity in clothes, simplicity in life.

This year we decided to stop the boys' therapy for the school year.  It will be really nice to be able to come home from school in a leisurely fashion (read: Sonic Happy Hour) and the boys can get right to their showers, homework, and playing.

Ilse will have her therapy in the mornings.  I'm betting, since she has six therapies a week, that we will be busy for four mornings to get it all done.

I'm not sure what our nursing situation will be.  To be honest, since our wonderful nurse Angie took another job, I just don't have the heart to look for another nurse or open up our home to another one, for quite a while.  I'm going to see how I do with sleep and mentally/emotionally before I think about using all our hours again.

Thankfully we have some good financial things going on.  I've finally conquered (thank you, Lord!) my Starbucks addiction/need/desire.  Switching it out 1:1 for Sonic was the key.  Thanks for the idea, George!  Now I'm going to Sonic even less than 1:1, but have the freedom to go as many times as I need to or want to is pretty awesome.  Not going to Starbucks is saving us a pretty penny, let me tell you.  I pretty much made my mom speechless the other day when I told her how much we would save.  There are some other places we need to put that money, like giving to the church.

Now that we have also mostly conquered our complete exhaustion that made staying home on Sundays so easy, we've been so enjoying being at the Lord's Table and being with our church family again.

And we've also finished paying off Tim's alternative certification program, which will raise his income $380 a month, which will in turn pay for his Uber cars, if we choose to go that route with his transportation this school year.  Even if I drive him sometimes, at least we know that we can afford Uber and that is a big blessing from the Lord.

In the next few years we're looking forward to living on the same plot of land with Marc and Ivy and their kidlets.  We've been dreaming of it for years and hopefully we'll be able to buy the land and build before to much more time passes.  I'm looking forward to living next to my best friend and letting our kids grow up together.

And that is my brain in a nutshell today.  :)

Monday, July 27, 2015

Simplify Simplify!

I read an article the other day about how successful people wear the same clothes every day.  While I'm not interested in having a 'uniform', I am interested in simplifying our laundry situation during the school year.  For two years now I have bought the boys a pair of clothes for each school day and one extra pair in case of an accident.  Every day when the boys come home, they put their clothes in the dirty clothes, shower, and put on clean clothes, which they then wear the next day to school.  All this is to protect Ilse from germs, in particular RSV.  We've been successful thus far: she's never had RSV.  In fact this past year she's been sick one time with a cold.  Only once.  That's pretty awesome!

But I can't do it anymore.  There's too much laundry.  I see it in my dreams.

So the other day I went to Old Navy and bought the boys five shirts each (and they match!), two matching pairs of shorts, and four different colored pairs of jeans.  I don't know why I got different colored jeans, I think I had a brain fart, but it's too late to change it now.

We came home and I wrote M for Monday on the orange shirts, T for Tuesday on the light blue, etc., etc., etc..  For the shorts (for august thru october ish) I wrote M/T/W on the grey pair and TR/F on the khaki pair.  The jeans also got M/T/W and TR/F on them.

I'm hoping that with designated clothes to wear on specific days, my boys will always look decent and that we will have much MUCH less laundry.

I'll let you know how it goes.