Tuesday, May 2, 2017

To Want Change or Not to Want Change

The accepted thing in the disabled community seems to be to say

"I wouldn't change my kid for anything."

Those who would change their kid come across as unaccepting and a tiny bit mean. 

Some folks even think that parents who wish their kid were different
must not love their kid as much as other parents love theirs.

But I'm striving for a pure moment of honesty here, folks.
Think deeply about what's in your heart and listen to mine.

I'd love to be able to change my kids.

If I could erase the drug abuse Joe and Chris's mom did that so badly affected their brains, I would.
If I could take away Joe's anxiety and depression, I would.
If I could prevent that suicide attempt three years ago, I would.
If I could make their brains function normally without ADHD, I would.

If I could magically make Ilse eat by mouth, I would.
If I could make her immune system work properly, I would.
If I could look at her, snap my fingers, and have her walk, I would.
If I could flip a switch and give her the ability to talk, I would.
If I could make her body produce cholesterol and take away her syndrome, I would.

I don't like seeing the tears in my son's eyes when he doesn't understand his math because his mom did drugs.

I don't like that my son felt so badly about himself he tried to jump off a bridge, because his mom did drugs and it affected his brain.

I don't like that my sons can't focus at school because their mom did drugs and made their brains develop abnormally.

I don't like that Ilse endures pain and can't tell me.

I don't like that she gets hungry and doesn't understand what's wrong and how to fix it.

I don't like that she can't walk but falls down in fear when I let go of her.

I don't like that she needs nursing at night to protect her from pulling out her g-tube or choking herself.

I don't like that she can't spend the whole school day with her regular kindergarten class.

I don't like that she won't be enjoying cupcakes at school on her birthday like other kids.

I don't like the doctors appointments, the counseling appointments, the therapy appointments, and the DME supplies we get delivered to our house.

If I could give my kids a physically, emotionally, and mentally healthy life, I would
in a heartbeat.

But I know I can't.
I love my kids the way they are.
I'm thankful for our life, the way it is.

I know it's God given and God planned.
I know he has a path for each of my kids to walk
and I know their pain and struggles are showing God's glory.

But it makes me sad. 
I don't like it.

I would change it
if I could.

Monday, March 20, 2017

I will rise

There’s a brokenness inside of you
there’s a wound that still reminds you
of the fear, shame and rejection
you have seen it, you have seen it
You know it’s time to get up
but your heart’s paralyzed, you’re so stuck
you’re past the point of trying again
you’re defeated, you’re defeated
But something inside you can’t deny
you hear the call of your Creator
I made you for more, unlocked the door
I wanna restore your Glory
So Rise
Breaking the dark, piercing the night
you’re made to shine
an army of hope, bringing the world a radiant light, a radiant light
you were made to Rise
lift your head and look around you
see the dreams you lost, they’ve found you
and the heart that once was beating
coming back to life, coming back to life
(back to chorus)
shut the door on yesterday
leave what happened in the grave
you were made to rise
you were made to shine
Creation’s longing for the day
for kings and queens to take their place
you were made to rise
you were made to shine
Breaking the dark, piercing the night
Made to shine
Bring the world a radiant light
breaking the dark, piercing the night
you’re made to shine
an army of hope, bringing the world a radiant light
a radiant light
you were made to rise, Rise (repeat line to fade)

I hate that song.
I listen to it and I know, deep in my soul, that it's not true. It doesn't match my life and I'm pretty sure it doesn't match yours. Hearing a song like this hurts me. It makes me feel like I'm doing life wrong. It makes me feel like it's my fault my husband has cerebral palsy; my son has PTSD, ODD, RAD, ADHD; my other son has mental illness, ADHD, and is in the 99th percentile for anxiety and depression; and that my daughter has Smith-Lemli-Opitz. And on top of that, I have my own issues. Did the person who wrote this song really feel like they were made to rise? They could just escape their problems because God made them to rise? The dreams I've lost and that have been taken from me have not found me. Instead they're getting further and further away. I feel like I'm swimming in a sea of such dirty water that I can't see one foot in front of me. Instead I'm just taking step by step, or swimming stroke by stroke by holding onto God's hand. I certainly haven't, nor can I, just rise.

But then there's this song.
There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say "It is well"

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

And I hear the voice of many angels sing,
"Worthy is the Lamb"
And I hear the cry of every longing heart,
"Worthy is the Lamb"

And I hear the voice of many angels sing,
"Worthy is the Lamb"
And I hear the cry of every longing heart,
"Worthy is the Lamb"

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

Yes. Chris Tomlin got it right.
Someday, I will rise, when my life is over. And when I'm in Paradise, there will be no more sorrow and pain. I'll finally be able to see Who it is I've had faith in. And this is the only kind of Hope I really believe in. I have hope in the promises of God, not that someday my child might get better. That is a hope that could very well disappoint and be deferred, and thus make my heart sick. My heart longs for the peace that is coming someday. I was listening to a friend talk the other day about how being older and being sick with cancer has made him be able to put aside earthly things more easily and just long for Jesus, and I could identify even though I'm only 35. I'm longing for the peace that I will have in heaven. 
Knowing the day is coming of Jesus calling my name and the darkness breaking to light makes me able to say, "It is well."

Sunday, March 19, 2017

Lots on my mind

I have so many things on my mind today. And today is not different than other days, I guess.

I've noticed Ilse flapping her arms. She does it so much more frequently than she used to. I used to think she was making her bracelet jingle, but I think now I was wrong.

Also, today in church I thinks she MIGHT have had a few seizures. Her head jerked a few times and her eyes weren't straight. She did it at least three times. I'm not going to pursue it unless she does it again. Someone once said that if a child with SLOS doesn't have seizures now, she will. So I've always felt it was just a matter of time.

I started Ilse on her Robinul today but I don't feel like it stopped her drool. It did lessen her pee though, so there's that. Maybe it will work better tomorrow.

I had to fill out the Vineland-3 regarding Joey. It's an assessment of adaptive behaviors, basically how he handles things and what he can do. So much he can do but so so much he can't, and I don't really feel like it's an accurate picture of him.

I can't remember to take my blood pressure medicine and so my headaches are back. I guess I need to call the dr about that, and ask her if it's ok to take it at night like my other meds, because clearly I can't do mornings.

The front of our car is dragging on the ground.

Ilse was up 98% of the night last night. Maybe I should have taken her iPad away, but I didn't want to deal with the screaming, so I just let her watch stuff and I slept. Some. She watched something with Julie Andrews, I know that much.

Tim lost 6 pounds after swimming two consecutive days. Obnoxious and amazing.

Monday, November 14, 2016


The day after the election (oh may it rest in peace and never come back to haunt us!) I heard Rush Limbaugh on the radio ranting about Diversity.

His points included:

  1. People who want Congress and the Military to be diverse absolutely mean that white people are inherently bad and racist and there need to be fewer of them represented.
  2. By claiming our military is diverse we are saying that any other quality doesn't matter but that diversity is the most important thing.
  3. Every voice can be represented by white men (his example was something along the lines of: Do you think that men can't adequately represent women? And I thought, well of course they can't! Women have their own voice and can be their own advocates! And then the one that irked me the most......
  4. In order to be diverse that means you are subtracting white in order to have other voices.
That is just logically not true. 

This got me thinking about diversity even more than I previous had been, which was a bit.

A few of the questions on Guide Star regarding JourneyFEST's Board of Directors are 'Do you have races other than white represented?' and 'Do you have disabilities represented?' We do have disabilities represented (my husband Tim has cerebral palsy) and let me tell you, it is necessary to have disabilities represented on the board of a disability support non profit! Parents have a big voice, yes, but the disabled voice is important and shouldn't be ignored.

It's the same with different races. As much as I have learned to appreciate and respect people of color and hispanics (don't shoot me for being an admitted work in progress), I *still* do not understand the issues enough to be a voice for them. I don't, and neither does Rush Limbaugh.  

All voices are important and all voices need to be listened to.

Over the weekend I went to a pre conference training on "Making the Gospel Accessible to All", which, you guessed it, was about how not only to include disabled people in church, but how to prepare and WANT them so that when they arrive, they will feel expected and not like we don't want them.

The speaker, Dr. Ken Campbell, referenced the following verses from Luke 14. Read vs. 16-23

But [Jesus] said to him, “A man once gave a great banquet and invited many. And at the time for the banquet he sent his servant to say to those who had been invited, ‘Come, for everything is now ready.’ But they all alike began to make excuses. The first said to him, ‘I have bought a field, and I must go out and see it. Please have me excused.’ And another said, ‘I have bought five yoke of oxen, and I go to examine them. Please have me excused.’ And another said, ‘I have married a wife, and therefore I cannot come.’ So the servant came and reported these things to his master. Then the master of the house became angry and said to his servant, ‘Go out quickly to the streets and lanes of the city, and bring in the poor and crippled and blind and lame.’ And the servant said, ‘Sir, what you commanded has been done, and still there is room.’ And the master said to the servant, ‘Go out to the highways and hedges and compel people to come in, that my house may be filled.

If our goal is for the Gospel to be accessible to all, then we need to compel people with disabilities to come to church. We need to invite them again and again until they give in and come. And we need to be prepared so that when they come, they realize that we were ready for them and had expected them. We want them to feel loved and learn to love Jesus and have a church home.

And 'THEM' is me! We want to be included and EXPECTED at church, with all our unique needs anticipated and taken care of. Ilse might be loud in the service and that needs to be ok. (I can't tell you how much I always appreciated our previous church home being so welcoming of her noises!) There are a thousand other things special needs families need. 

And again, the goal is *That God's House May Be Filled*.

I know I segued a bit into church issues when I was talking about diversity, but it's really the same thing. Churches need diversity! We don't all want to be the same race, the same background, the same personalities. God made diversity and we should embrace and welcome it.


The PCA Transformed Conference was this past weekend, and my dear sister Ivy paid for me to go and she paid for a hotel room so I could have an uninterrupted night of sleep for my birthday in a beautiful locale. Oh, she loves me!!  <3

At the conference, I learned so many wonderful things and my soul was encouraged to love Jesus ever deeply. One of the sessions I attended was Redemptive Rhythms of Life: An Invitation to Sabbath. How did I never know before what Sabbath was and WHY celebrating the Sabbath is so important?

There are 10 Commandments and mainstream Christianity tries to observe them all with the except of the 4th... Remember the Sabbath Day and keep it holy. Why? Why have we neglected the blessings that come from Sabbath?

Yes, there are blessings that come from celebrating the Sabbath, and I'll get into that after I describe what I learned.

First, it doesn't matter what day you Sabbath, but it must be in this rhythm, six days of work, one day of Sabbath.

Sabbath is ceasing, enjoying, and feasting. We cease from the need to feel productive or be productive and we remember that God is our provider. God rested on the seventh day and saw that what he had made was very good; so we should rest on the seventh day and feel satisfaction in what we have accomplished and remember that God provided everything we have, even the ability to work.  We remember that work should not be our idol and that we should not measure people's worth based on their accomplishments, but rather on the fact that they are people made in the image of God.

We enjoy things that bring us joy and we enjoy Jesus and friends.

We feast on good food and fellowship, remembering that Jesus gave us our food and our friends.

We don't work, but instead keep a mindset of quiet and restful PEACE.

When I heard the command to Sabbath and the benefits, I thought to myself, MY WORD! I need rest. It is my never ending refrain these days! I'm exhausted! I'm tired! I am stressed. I need peace!

And when we keep the Sabbath, the rest from that day bleeds into the other days of the week, the days in which we must work.

Yesterday we went to church in the morning early. We got there 30 minutes before church started because we had prepared for our Sabbath by going to bed restfully early on Saturday. We got Starbucks on the way and praised God for food and each other. We visited with friends at church, got lunch, went to a park, read good Christian books, and prayed and talked.

In the afternoon I took a leisurely nap, then Tim went to visit his brothers. I did one load of laundry (because a child had ZERO CLOTHES) and then took my shower and went to bed around 10pm. I read some of my book "Keeping the Sabbath Wholly" and then fell asleep feeling more peaceful than I ever have.

Today when I woke up, I was rejuvenated, had a good attitude, and I've been able to accomplish my work today without feeling like the world was collapsing around me. That is a huge blessing to me!

We don't want to be legalistic about keeping the Sabbath, but we want to put Jesus first and truly REST.

Sunday, October 2, 2016

Rest in Jesus

The Lord spoke to me in church this morning and reminded me of something important. He reminded me that rest is in Him. Now I know that, but I have been thinking of it all wrong.

I've been so exhausted with my difficult life, and I've been completely burned out. I've been looking for rest, and I've known for a long time I needed to make rest a priority. I don't mean body rest, but mind rest.

If I possibly can, after I do my morning driving, I come home and go to sleep so that my mind can rest. Then I wake up and do my afternoon driving and spend the afternoon and evening with my family. I don't like doing that because I'm not sleepy, I'm just needing rest.

What other ways are there to find rest? I really don't know and I've been at a loss to do anything but sleep.

Then in church Jesus reminded me that rest is in him. I haven't been asking him for help and a peaceful mind like I should have. There's no denying my life is hard but I'm hoping that with asking Jesus for rest, that I will feel rejuvenated.

Wednesday, September 28, 2016

Updated Outlook

I slept in today.... till 11. When I woke up my outlook was so much better. It's amazing how changing the time you wake up in the morning can change so many things. I guess I'm just not made to wake up at 6am.

Unfortunately, though, I usually have to. Today, though, all the kids are home and we are doing a few things. Chris and I worked on laundry and we're in the middle of dishes, and then for lunch we're having the amazing chili I made last night, with fritos, of course.

Poor Joe is absolutely miserable. He doesn't have a fever but his whole body hurts. He said it hurts to walk and he just looks and sounds miserable. He's constipated all the time (part of being born with drugs in his system, maybe?) and sometimes it just boils over and we have to do the major miralax treatment. We're watching him, because this leg pain kind of coincided with starting his Seroquel again, as did this weird hand shaking tic. My poor son, he's had the deck stacked against him from the very beginning, and it hurts.

Ilse hasn't barfed again but her temp is right at 100. All she wants to do is have Violet thrown. I will be happy when this stage is over because my goodness, poor Violet! Lol!

Tonight we're turning leftover chili into sloppy Joes and then I'll have made dinner three days in a row.

I took my laundry out to wash it and discovered that some evil cat had peed in it, at least twice. Next time Gloria does that she's getting smacked on her butt. This is just too gross.