Tuesday, September 27, 2016

no humor today

My humorous voice is missing today.

On my way home from my morning driving (take the boys to school, take Ilse to school, take Tim to work) I was deliberating whether or not to go to bible study at church or to sink into mindless oblivion for a few hours before it was time to do my afternoon driving. I'd just decided to nap when Ilse's school called. She threw up her water so they wanted me to come get her. Part of me wishes they'd kept her and just not fed her any more for a few hours, but the other part of me remembered Sunday with Chris, so of course I went and got her.

Forty minutes later I was back home gain with my baby. I bathed her and we laid down to nap. I could tell she wasn't at her best because she and I slept about 4 hours. Oblivion to life's troubles is a wonderful thing.

When we woke up it was time for afternoon driving; the boys came home and together we went to get  Tim. Joey clearly doesn't feel good though. He says his legs hurt. He's always said that since he was little; I wish I knew what makes them hurt. I'm having him sit and drink miralax because he's terribly constipated. Poor boy; his tummy just doesn't move food right.

I feel like my whole family is falling apart; my house is falling apart; my mind is being held together by a wish and a prayer. Yes, that sounds dramatic but if you are a special needs mom you can identify.

Life isn't a bed of roses for sure. It's hard and stressful and filled with moments that make you wonder how you are still living. And when enough of those moments pile onto your heart you long for eternal rest.

But you can't have it. I can't have it. We have to keep going. I have to make supper. I have to unload the dishwasher. I have to drive Tim to re:gen. I have to wash laundry. I'm out of underwear, so that one's a necessity, lol!

I have to love my children and take their temperatures and manage to get water and food down Ilse's tummy.  I have to throw Violet across the room so puppy Ilse can fetch her, again and again and again.

I have to rely on the Lord and on my friends and on my family. And I have to hold it together because  there is no time for a special needs mom to crumble. There literally isn't time.

And then I look over and saw that Ilse put Violet in the dog food container. This is two victories: it's container play... Ilse is putting something IN something instead of just throwing things out. And secondly, Violet is a dog and clearly Ilse is feeding her.  Haha!

xoxo


Sunday, September 25, 2016

Sunday Confessions

Sunday Confessions: Today is hard. Totally depressingly hard. I was sitting in church absolutely loving hearing Tim play with the ensemble (drums) when Chris upchucked on the chair in front of us. Great, now we're THOSE people who come to a new church and barf. In the annals of our previous church there were barf stories. There was the family whose little girl started barfing so the mom just passed her purse down the row for the girl to barf in. There was the boy who barfed on the girl in front of him. Yep. So now, we're right there too. Lovely. I ran out to look for a towel. The church kitchen doesn't have towels... every cabinet is labeled. Not a single one said towels. After searching I found one high on a shelf... one towel. I bet someone left it after a potluck or something. They won't want it back. 

We had chosen to sit in the third row this morning to be more involved in worship. Yeah, all we did was distract. I mouthed words to Tim as he was up there with the drums during the corporate confession of sin.... it was like I was confessing our disgustingness as a family... barf on a church chair. In worship. In the third row. "Tim, Chris barfed." (Complete with hand motions and the barf mouth.) "All on these three chairs." (Elaborate motions.) "Don't let ANYONE sit there!" He raised his eyebrows at me and mouthed back, "He barfed!?" I nodded my head.

I contemplated how I could give him the rest of the info I needed to give him. I thought, can I sneak up there during a prayer? Can I send Joey? No, so instead I searched my purse for a pen. Of course it was buried deeply and as I glanced up I saw someone staring at me: it was our friend-who's-getting-ordained-tonight-and-now-I-can't-go-see-what-a-Presbyterian-ordination-looks-like's father-in-law. He probably wonders what his daughter has gotten into marrying into a church where somebody's kid barfs in the chair and then the mom writes notes in church.

I wrote my note to Tim and then went through all the motions again to tell him it was for him and to please read it. I draped it over the offending chair in front of me.

We started walking out, heading to the nursery to get Ilse and go home before anybody caught whatever it was Chris had. (I think it might be flu, now.) A nursery worker walked into the sanctuary. Apparently Ilse was having a complete meltdown in the nursery. I comforted the nursery workers and we made our escape. 

Tim stayed to finish the service and attend the young families' meeting I'd really wanted to be part of. The church is asking how they can best serve us and man, I had ideas. Now I'll have to email them instead of sitting there in peace, being served pizza I didn't pay for, and visiting with new friends.

I stopped on the way home and got sprite for both boys. When one has something the other probably isn't far behind. Of course, at the time I thought it was stomach bug (which we've never had and DON'T WANT) but now with the fever and body aches I think it's flu, especially since there's been no more barfing.

Lovely. Flu is just what we need, especially when the kids haven't gotten flu shots yet.

Today is not my day. If you need me, I'll be at home, eating the pizza I ordered and paid for myself, watching Doctor Who while I chuck Ilse's Violet across the living room floor for her to go 'fetch'. My daughter wants to be a dog.

Monday, May 16, 2016

Emma

Yes, this post is about me. I've noticed something about myself.

I'm somber. I don't joke much and I'm not silly very often. Occasionally I joke with people when I'm trying to be friendly, but not often. (Now, I do love to give wry one liners in family situations. That is a passion.)

I've been reading Christian fiction books for many, many years, because they allow me to turn my brain off and have non-thinking relaxation. I've needed that.

But occasionally a book here or there didn't sit right with me, and I've finally hit on why. Some of these women are frivolous. All they do is run around the country, try to get others married, and giggle and laugh. They have no substance in their lives. They have no hard times and if they learn something, it's because God taught it to them while the handsome man they just fell for isn't quite on board with marrying them. More often than not, though, they teach him something, because, as everyone knows, men just need a little help.

Gag.

Frivolous. My life isn't like that. My life is hard. Marriage is hard, parenting is hard, and it's extra hard when you have special needs kids. I'm juggling marriage, the house, a child who might decide to kill himself any minute and a daughter who is HEAVY, doesn't sleep, doesn't eat, and is immunodeficient.

Even when I get to go out and have 'fun', I'm more thinking about relaxing and turning my brain off, not frivolity. Giggling and laughing and too much happiness make me feel old and numb.

And I'm very aware I sound like a scrooge saying that.

I also know I sound like I hate my life, but I don't. I love my life and I love my family, but that doesn't make it easy.

Tim tells me I'm more frivolous than I used to be back when he met me, but I feel like I'm way less fun loving. Life sometimes just catches up to you.

<3 p="">

Tuesday, April 5, 2016

Blood Pressure

I think if I took my blood pressure right now it would be 300 over 200

because

I discovered some of Chris's homework that he brought home to correct. I knew about some of it but there was a huge pile (and not a neat pile, mind you) in his room amidst the toys. He got a 15 on one paper. It's all from laziness.

Ilse had a gigantic poopy diaper and it got everywhere.

Joey is out of his medicine so he's anxious, paranoid, and depressed.

I just filled out the Vineland-II for Ilse's eval for kindergarten, which is taking place tomorrow a.m., and let's just say, it was depressing and it sucked. On top of everything else she can't do, I had to admit that she doesn't chew with her mouth shut. Ponder the idiocy of that for a minute.

I think I will not check my blood pressure but will instead listen to the sounds of the wind chimes, think about how Jesus loves me, and plan to go to bed and shut out the world as soon as I can.


Tuesday, March 22, 2016

Life Update

This week I got fed up with Ilse's screaming and decided (again) I have to teach her to communicate.

This week we decided to homeschool Joey next year because he's not doing well emotionally (still).

This week Chris has been reading his "I Survived" books every spare minute he has.

This week Tim turned in his resignation letter for his current job.

This week I recovered from a horrible bladder infection.

This week Ilse learned to say "Uh oh!"

This week my Facebook friend's husband died.

Last week Christopher's teacher's baby was stillborn.

This week is Easter. It's the day we Christians celebrate Jesus triumphing over death. It's the day we sing my favorite songs in the Hymnal. It's the day we remember Jesus LIVES.

Monday, February 8, 2016

Memorizing and Life

Lately I decided that I'm not a very nice person, so I've been working on memorizing some of the Sermon on the Mount so that the Lord will sanctify me some.

I've only got the first five verses done so far. Thankfully I haven't lost my ability to memorize. Back when I was a kid/teenager I used to memorize whole books of the bible. I've lost most of them, but I can still just look at a passage for a bit and have it memorized. Then I go throughout my day and repeat it every once in a while.

Life... well, my first inclination was to write that life sucks right now but that wouldn't be true, for 98% of life. There's always that 2% that really does suck. The sucky part is that I'm sick, Chris is sick, and Ilse has had a pretty high temp lately. Tomorrow morning she has to get some blood drawn (STAT as the pedi wrote on the form) because the pedi couldn't find anything wrong today. She threw the words 'Kawasaki Disease' out there which scared me mightily, although it's curable if caught in time.

The rest of life is good. Tim is doing better at work and the boys haven't shocked me with their behavior lately. And Ilse is getting bigger and stronger.

I have some trips planned. I'm going to San Antonio on Spring Break with my dear friend Sarah, and my sister and I are going to New York in July. This is the first time since Ilse was born that I will have taken a trip away from her and although it will be hard, I'm looking forward to the relaxation.

Till next time.  :)

Thursday, January 7, 2016

Another Ilse Post

For the longest time I've been able to let Ilse play in her room because it was safe enough for her. Then she learned to keep one hand on the dresser and reach another hand to the doorknob, but there was no way she could open the door. Then she learned to put both hands on the door knob and wiggle it back and forth, so that now she could accidentally open it and take a header one direction or another. So now I have to lock the bottom part of her dutch door from the outside so that doesn't happen. All that changed in about the space of a week (last week).

Then she learned how to hold on to the ledge on the top of her bottom door and systematically move her hands so they don't get smashed as she swings the top door back and forth, whacking it against the wall. That was a few nights ago.


Then this morning I went into her room and saw worse destruction than she has managed before, because for the first time she has learned to stand up at her shelf of boxes, as we call the little target shelf that is three by three and holds those fabric bins. She stood up there and started pulling things off the top. Thankfully she only managed to pull off the trashcan... thankfully she didn't eat/choke on the trash bag. Had she had more time she could have pulled the cd player off and her fan with the glass base, which is heavy enough to hurt her if it fell on her.

Apparently it's time to upgrade the security in her room. I'm determined to upgrade as long as I can so she can have a pretty room that is safe, until the [likely] inevitable time comes that all she can have in there is a mattress. I'd like to avoid that, but others haven't had much luck so I don't see how my child is going to be much different. I don't think she's a mountain scaler or barrier breaker. I think she's fairly ordinary for a SLOS kiddie, so yes, she'll probably be too destructive and eventually I'll even have to remove her ceiling fan lest she swing on it.

In the meantime, I've chosen a piece from Ikea that is taller so I will have a safe place to put her cd player and fan, and I can have some drawers up high to put her medicines in so a drawer in the dresser will be freed up. And I'm betting if I ask really *really* nicely my dad might secure the unit to the wall so it doesn't fall on Ilse and kill her. I had a dresser fall on me once when I was little. Obviously I was not injured but Ilse is not as hardy as I was.  :)


I'm planning on going tomorrow to Ikea and buying this 'security upgrade'. But for tonight, Joey and I are working in Ilse's room to make it safer. I don't believe there's a snowball's chance in hell that she will sleep tonight.


In other news, our nurse quit and it made today extremely inconvenient, since I had to go get the rental car in an uber and Ilse's car seat was malfunctioning. Of course her car seat fixed itself just in the knick of time for me to bring her home safely. I'm glad I got her home yesterday in the Uber and then to the car rental place today without being in a wreck while she was not well secured.

God is good to us.