Strength for the Journey

Relying on God in our strange trip with Mitochondrial Disease

What I really need is…

Forget the dishwasher.  Nevermind the little robot vacuum cleaner.

What this gal needs is a self-cleaning refrigerator.

You know what I mean.  Those leftovers that you forget about in the back that linger until they have turned into science projects.

Raise your hand if you’ve ever thrown out a container rather than risk the stench of opening it….

Every time I clean it out, I swear I won’t let stuff go to waste again, and every time it builds back up.  Slowly, as I get busy and things get pushed further back until I can no longer easily fit something on a shelf.

I have been told that once Thomas hits his teens, that he will keep it cleaned out for me 😉

We shall see.  In the meantime, it’s garbage day, and I’d better clean out the fridge before something walks out on its own.

Did you really just say that?

Someone said something recently that both irritated me, and made me think.  He said that the reason he didn’t get sick was because God doesn’t send sickness and he only accepts things from God, and since sickness is not from God, he doesn’t accept it and he doesn’t get sick.

HUH??

Nowhere in my Bible do I read that believers will be illness free if they have perfect faith.  What an easy way this would be to judge people, and how very like the Pharisees of Jesus’ time.

We live in a fallen world.  I don’t understand why some things happen, and I never will.  Do I believe that God sends illness to us to test us?  No.  I do believe, however that how we react to the unfairness of life will reflect our heart and our spiritual state.  I will never claim to understand the mind of God, His ways are not my ways.  What I do know is that I have had a choice, to let my experience make me better or bitter.

I deal with illness on a daily basis, both my own, and that of others.  I fight depression and God has allowed me to find the right medicine to treat my illness.  My daughter has Mitochondrial Disease and is severely disabled as a result of what it has done to her body.  For someone to say that an illness that my daughter was born with is somehow a result of not being right with God, I think, really??  Did you really just say that?

John chapter 9 addresses this:

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

 

Whenever I become weary of taking care of Erin’s needs, I think of what Jesus said in Matthew chapter 25:

‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

Indeed, those as needy as Erin are among ‘the least of these.’  God is not punishing me or her with her illness.  It is simply one of those things that happens because we live in an imperfect world.

God wants good things for us, so why do bad things happen?  I don’t know.  People far smarter than me have struggled with this question.  What I do know is that physical illness is not, nor ever has been an indication that a person is spiritually weak.  To say otherwise is to deny what God said to Isaiah:

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord.

Let us do what we can to help those struggling with illness without questioning their spiritual fitness.

PS: Yesterday my blog got more hits than ever before.  Thanks to those who visited!

An open letter to men

Dear men,

Yes, you there.  I’m talking to you.  I just thought I’d let you know that you are awesome.

I know that bashing men seems like the thing to do these days…. “Oh. My. Word. He. Has. No. Clue.”

Talking heads showcase deadbeat dads who sleep around and then refuse responsibility for their children.  Comedies make light of masculine traits and paint men as  clueless idiots.  Fathers never know best anymore, that’s too old fashioned.

Men are just overgrown boys who want to play (okay, maybe that one has a ring of truth 😉

But when I look around, I see men who love their wives.  Men who honor their commitments, change diapers and do dishes.  I see strong men who aren’t afraid to cry.  Men who are smart enough to keep their mouth shut when a woman is venting her emotions.

Are men different from women?  Yes!  And thank God for that!  We are fearfully and wonderfully made, and that is a blessing.

So that’s all, I just wanted all of you to know that there is at least one woman out here who knows that underneath that beard and rough exterior, there beats the strong heart of a Godly man.

This post is a link-up to:

workshop-button-1

How things have changed!

10 years ago

10 years ago

Today

Today

It’s interesting to think of how I’ve changed over the last ten years.

I’m older
I’m blonder
I’m a mom

The bigger changes, however, are internal.  I’ve learned a lot about myself.

I’m stronger than I knew.
My faith has grown.
I worry less, I pray more.

Becoming a mom both expanded and shrank my world.  It’s a lot harder to ‘get out’ now, but when I do, I appreciate it more.  Having a special needs child added a whole new level of stress to our lives, but we have weathered that with the help of amazing family and friends.

I’ve learned to laugh at myself.  Laughter can soften the hard edges of nearly any situation.

What about you?  How do you think I’ve changed?  How have you?

Today’s post inspired by workshop-button-1

Happy New Year

So, 2012 is history, and we’ve been given the gift of a new year filled with 365 pages to write on.

What will you do with your time?

I stopped making resolutions a few years back.  I never followed through, so what was the point?  They were always vague, easily fudge-able things anyway.

I want this year to be different.

In 2013 I want to become more present in the moment, more aware of what God is presenting to me in the here and now.  Too much of my time is often spent in planning other things or distracted and worried while not appreciating the blessings God is setting before me right now.

In 2013 I plan to read my Bible every day.  It should be a little easier to stay on track with this, since our whole congregation will be reading through a daily Bible together.  Daily communion with God is important to helping me to achieve goal number one.

In 2013 I want to take better care of myself.  I spend so much time taking care of others, that I most often neglect myself.    I’m going to spend time this year finding out what works best for me and doing what works.  Taking time for myself has to become more of a priority.  Following through with steps one and two should lead to a better awareness of how God expects me to care for myself so that I am able to care for others.

Finally, in 2013 I want to improve my writing skills and blog more consistently; at least twice per week.

So, are you making any resolutions this year?
Use your time wisely…. May God bless it richly!

One more medication….

Following my pattern of once a month blogging, I find myself here again.

This week Erin had an EEG done.  This was in response to some episodes at school that the teacher was concerned might be seizures.

Good eye Miss K.  Seizures it is.  Which means….

One more medication.  That’s all.

Once I got over my initial freak out, I realized that this doesn’t really change anything, it only adds one more medication to her routine.

Her seizures aren’t the stereotypical fall down and shake all over kind.  They’re more subtle than that and involve staring or stiffening up.

And yet again I counted my blessings.  Thankful that I’m able to be home to take her to her multiple doctor visits.  Thankful that medication exists to control seizures.  Thankful that the seizures aren’t worse.  Thankful that the teacher cared enough to say something.  Thankful that I don’t have to drive to Indianapolis for this doctor visit.

I’ve truly been granted a special blessing in this little girl who helps me to slow down and appreciate the little things and the small achievements.  And as we take this next step in our unexpected journey into disability, I find myself not frightened, but thankful.  I’m blessed with an awesome husband who walks with me down this road,  wonderful family and friends who support us in so many ways, and above all, a God who will never leave us or forsake us.282

Thankful today….

Another reminder that there is always someone whose burden is greater than mine….

Today a mom struck up a conversation with me at Tracey’s self defense class.  She was looking sweetly at Erin who had to come with me along with Thomas.  She asked how old Erin was.  It was a little difficult to understand her because we were trying to be quiet during class and English did not appear to be her first language.

She showed me pictures of her daughter, who was also 5 and also had special needs. I asked where she went to school, and it was the same school as Erin, but a different teacher.

I watched her watching Erin with an odd look on her face.

Slowly dawned on me what she was trying to say and it made me so sad.

“One month ago,” she said.  Her daughter died one month ago.

I tried to speak words of compassion, of comfort; but being a stranger, there was little I could really offer.  So I said a little prayer, that God will bring her comfort as only He is able, and squeezed my kids a little tighter.

Happy Birthday, it’s a girl!

Five years ago my life changed.  I had been married for five years.  Our marriage had already been tested in many ways.  We eagerly awaited the arrival of our second daughter, not realizing the new world she would open us to.  Scheduled to be born on Tom’s birthday, we thought what a neat thing it would be for them to share their birthday.

We marveled at how tiny she was.  Nearly 3 pounds lighter than her big sister was when she was born.  The girls were only 20 months apart — something we thought was smart considering my “advanced maternal age” (gotta love that medical term!).   As usual, there were adjustments to be made in our family routine.  Tracey loved her new role of big sister, and Tom and I felt like things were going pretty well.  As she grew and we realized something was wrong we went through the grieving process… each of us in our own way.  We were introduced to the world of therapies and disability.  I won’t pretend it wasn’t hard, but God gave us wonderful people to support us on our journey.  From our own families to our church family to therapists who became our friends, my world opened to new things I had never expected.

Since Erin was born, my priorities have changed and I’ve become less selfish.  You could argue that that would have naturally happened anyway, as you move into the parent hood.  I care about things I didn’t really think about before, like eliminating the use of the word “retard” and how each human life is worth living, even if the life isn’t one you had imagined.  I try to keep a sense of humor about things, and some days I’m more successful than others.

Some say that God doesn’t give us more than we can handle.  I disagree.  I believe he gives us way more than we can handle on our own so that we understand that our strength comes from him and not ourselves.  Raising any child isn’t easy.  Raising a child with special needs is even more difficult.  I don’t always consider Erin to be the gift of God that she is.  There are days when I’m tired of dealing with poop, or vomit, or therapies, or doctor visits.  And those are the days I lean on God the most.

Fortunately, most days are like today, happy ones.  Days when I get to relish her giggle and help her play.  And today is extra special as we celebrate five years with this precious girl. 

I remember

I remember
an autumn day not unlike today.
People going off to work,
not knowing they wouldn’t come home.

I remember
the black smoke rising
against the turquoise sky
polluting our national security.

I remember
fear, grief, confusion, shock.
Who did this? Why?
Tears falling under silent skies.

I remember
mourning together,
joining together,
working together.

I remember
the best in people
as together we faced the unthinkable
in those next few weeks.

So many things have changed
since that bright September morning.
Have we forgotten who we were on
September twelfth?

I remember.
Do you?

Random thoughts…

On beautiful autumn days like today I try to calm my mind and enjoy God’s creation.

It’s difficult.  Not just because I have a busy toddler and all of the things that fill a daily life.  Not even because I have a special needs daughter to throw extra things into the schedule.

No, it’s because I get distracted.  It’s so hard to follow the scripture that says “Be still and know that I AM God.”

I don’t believe it’s adult ADD.  I believe it’s the work of Satan.  The older I get, the more I believe that distraction is a primary tool for Satan among we in the ‘first world.’  Distractions keep us busy, and busyness keeps us from focusing on the important things in life.

Being still in our culture takes effort.  It takes practice.  It doesn’t come naturally.

Just ask Tracey.  She can hardly be still for any amount of time.  And how is she going to learn if she doesn’t see me practicing it?

So I make an effort.  Some days are more successful than others, but what I want Tracey to see is that it isn’t our doing things perfectly that is pleasing to God, it is the effort of a sincere heart.  I have to listen for his voice every day, even through all of the things that try to drown Him out.

So today, be sure that you take some time to be still.  God will bless you for it!

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