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.








Wednesday, January 6, 2016

Limits

It's politically correct to say there are no limits in life. Ministries are named after that concept, parents and schools tell kids 'you can be anything you want to be!' and disabled people are told that they can overcome and succeed beyond their highest expectation.

I don't wish to sound bitter or be a wet blanket, but it's just not true.

We all have limits. Speed limits, limits of the law, limits of conscience, limits of body and limits of mind.

People always want the one with disabilities to overcome. The world is filled with stories of those who have and we call them 'inspirational!' My own husband was declared brain dead twice as a baby, has had numerous surgeries, learned to walk four times, graduated college, and has become a teacher. He's called an overcomer and he has overcome so much, and yes, he's inspirational. And both he and the world expect him to have NO LIMITS.

But he does. He has only been able to overcome so much. He did finish college but was burned out before he got his teaching certification that way. He is not brain dead but he can't drive. He has a job but he works longer and harder than anyone else just to keep it. He has many thoughts that are complicated and well thought out, but he struggles to get them out of his mouth. He has limits.

My son Joe was born in less than ideal circumstances. He was neglected his first years of life. Daily he battles depression, anxiety, and he's woefully behind in school. He tries hard but he has limits.

My daughter Ilse is a four year old miracle child. We never expected her to be conceived and then we never expected her to have a syndrome. Then we hoped and prayed she would walk and talk and eat, but she doesn't yet. She has limits.

I'm an anxious and depressed mom and wife. I want to have a clean home and eat at home everyday, never spend extra money, be out of debt and remember to get the car tires rotated. But I have limits.

I don't think I'd personally go so far as to celebrate our limits because, frankly, they're pretty depressing. When I think of everything Tim can't do I get more depressed and worn out. When I focus on Joey's limits, I get frustrated. When I think of what Ilse can't do, I look out at my life stretching before me and I think there's no end.

Seemingly there's no limit to suffering.

But someday. Someday our limits will be overcome in Christ. Our suffering will end because of Christ. I hang on to that and I remember that eternal life is the true overcoming of limits. Someday Tim will not have trouble thinking. Someday Joey will not rock. Someday Ilse will walk and talk and eat. Someday I will not be anxious. Some day those of use who have been saved will truly live without the limits that sin has put on us and our world.

That is inspirational.


Saturday, January 2, 2016

Love

I've been thinking about something lately. In the US Christians get offended by absolutely everything.

"Every religion can be taught in public schools except Christianity!"
"Just wait until a Christian tries to pray out loud."
Starbucks cups...

You name it, some Christian has gotten offended.

I'm not even going to go into whether or not the folks are true believers. We'll just go with the fact that they use Christ's name and say they are his.

The other day I remembered the verse from I Corinthians 13. "Love does not take into account a wrong suffered."

Also, there's a verse somewhere that says the world will know we are Jesus' disciples by our love. (and a verse somewhere that says something about a chicken!)

I'm purposing to love in such a way that allows myself to be wronged without taking it into account.

That will be really hard, because frankly, I like my own way. I like being the boss. I like being viewed as the best.

But that is not the way Jesus was. He told us to love and not take into account a wrong suffered.