What's up with all this stuff?

The phrase "one last shaking" means a thorough housecleaning, getting rid of all the historical and religious junk so that the unshakable essentials stand clear and uncluttered.   Hebrews 12:27 The Message

I'm running around the house picking up weekend clutter.  This is my typical Monday ritual.  Stuff, stuff, stuff....everywhere. 

My mind is overwhelmed with stuff.  As I'm preparing for Christmas, my annual crisis of 'what in the world will I buy for children who can't talk or use their hands?' just won't come.  It's 5 days before the big day and I have very little shopping done.  I can't seem to go out and pull more stuff in. 

We're taking the first truck load of our life to North Carolina when we go for Christmas and as I look through things and wonder what goes and what doesn't, I have a first hand---up-close-and-personal look at what I've filled my life with.  So many little things that at the end of the day mean so little.  It's no wonder I feel overwhelmed by it all. 

If I never personally brought a single thing in to this house, I think it would still fill up.  I do bring things in though, and I'm beginning to realize that all of that clutter in my life clutters my heart.  I'm distracted and discouraged.  We've dealt with seizures throughout the weekend for Emily; we're still working on Abby's foot and her congested chest fills my mind. It's really just more stuff.  More clutter to think about and clear up. More problems to address and decisions to make. I haven't thought much at all about why we even celebrate.

I'm allowing all of the stuff in life to pull me from the reason for life; from the gifts of life.  I'm missing it.  The verse from Hebrews is talking about Heaven and people who ignore the warnings to clean their hearts of so much religious "stuff".  If that was written today I wonder if it would include a warning about accumulating or focusing on worldly stuff that doesn't matter.  The things that take our attention. 

Even Emily and Abby.  Their problems are real and can't be ignored.  We need things in our home that can't be ignored.  They can't consume either.  Our hearts and minds need to stand clear and uncluttered.  That's how God is able to speak to us. 

Physically uncluttering my life gives me the time and focus I need to really listen to God and handle what needs to be done with my kids.  I don't want to miss the true gifts of Christmas.  The voice of God; the gift of his son.  The miracle of our own children, whatever package they've come in.  The hope of a future; the promise of eternity. 

The dishes in the sink, the doctors appointments to make, the monster in the dryer who eats single socks shouldn't ever be allowed to take those gifts away, even for a moment.  May the only stuff we truly hold on to be the stuff gifted to us by God.
  
Will you join with me in guarding against the clutter this Christmas season?

One year later...

"No one cares about this.....no one can relate to me." I told my husband with my first post.
"That doesn't matter" he answered.
"If you feel like your supposed to write it, it's not up to you what God does with it. If no one ever reads it, if no one gets it, if you discover you actually can't write, it doesn't matter. All that matters is that you do what you hear God asking you to do".

I love those words. I think of them often and in many areas of my life. All we can do is what God is asking us to do, even when it's scary. I knew this would be a year of transitions; I could sense it. Looking back over my year, I'm so thankful I've been able to write some of it down.

Exactly one year ago today I started a blog.  A Cyber-diary.  I wasn't sure what exactly I wanted from it or for it. I was terrified to put my heart and my thoughts out there for all to see.  I still am.  Every single time I hit the "publish post" button I hold my breath and click. 

Why would anyone want to be so exposed? 

I honestly just felt like God said "it's time".  I've always known I would share my story.  I live a life that is so much bigger than I could ever dream of being.  It is only by the grace of God that I can manage it at all.  I wanted to point to Him; to show his light.  I wanted someone, anyone to see how small I am and how truly great He is. 

Sometimes it's lonely having children like I do.  I don't know anyone with two children with CP like Emily and Abby.  I'm sure they are there, I've just never met them.  I've never been able to ask another mom what she does when both of her 12 year old non-verbal children are crying at the same time?  How do you feed them or manage their educations?   Somehow putting it into words helps me work through it.  It's hard to work out all that's going on, many times I just write...I keep typing letters and laying it down.  It's always good to lay it down. 

I've appreciated the love and encouragement I've received.  Most of all, I appreciate knowing how very much the same we all are when I feel so different.  I've heard over and over again the way people relate to how I've felt in their own circumstance.  I wanted to share about the life of children with disabilities and the heart of a mother.  I've discovered a precious fact through this year; it doesn't really matter what the circumstance may be, the emotion and solutions are the same.  God given feelings, God restored lives.  It comforts me. 

I committed to one year of writing and I have to say I enjoy it.  I wish I had more time and courage to say what I want to say, but I'm getting there.  I've learned a lot about blogging in general which is easily summed up by saying I don't know much about blogging (like I just realized this week that I had a twitter bird on my site that's not connected to a tweet:).  But again, I'm learning. 

I'm thankful for anyone who has taken the time to see me. I hope you are all seeking after our amazing God who does more than we can ask or imagine--even through a blog.  

I'll leave you with my very first post.

Where to begin, where to begin? 12/9/2009


What does an inside view of living life with disabled children look like? I think it's hard to know where to begin because the only constant in my life is that everything is subject to change. The world around me moves and I have no control over it. That's tough for a control freak to deal with. I would like to think that I have some ability to move life in the direction I want to see it go. It seems like other people do.

I think my girls wish for some measure of control too, a way to influence their environment. When I feel out of control, I pray knowing that God hears me. It calms me. I encourage Emily and Abby to pray for the same reasons. I tell them that God can hear their words even if I can't. I hope they understand, but it must be hard for them to know how to have a conversation with God when they have never had a conversation with anyone else. I try to imagine what God hears when they talk to him. Do words that can't be spoken on earth shout in heaven? I want them to hear him answer them and to know his presence. I want him to whisper to their hearts that He will never leave or forsake them. I want him to whisper to my heart too.

I believe that imperfect children and imperfect lives are a constant reminder of Gods promises. The promise of eternal life for those who believe. The promise that one day all of the heartache of this world will be forgotten. That they will be healed and whole. That I will be healed and whole. They remind me to pray for my own attitude and responses before I pray for God to change theirs.

Their lives have asked me to bear witness to suffering, to do what I can to change it, and when I can't, to hold their hand. They have asked me without words to speak for them. They have asked me to feed and dress them when they can't. To patiently wait for them to do what they can for themselves. To encourage them when they try. They ask me to believe in them when no one else does. To carry them through, and to walk beside. They have asked me to be Christ-like. They have reminded me of what He did for me.

In my ever changing completely out of control life I do have one choice that is mine. It is the only control I really have and it is a choice that is made day after day. How will I choose to respond? When all of those questions are asked of me, when I am praying to just get through minutes at a time, how will I choose to respond? Not just in my actions, but in my heart and my head.

We all walk this journey of response. It is one I have struggled with. I will be doing so this year with you! Welcome to my crazy life!

Psalm 71:14-16
But as for me, I will always have hope;
I will praise you more and more.
My mouth will tell of your righteousness,
Of your salvation all day long,
Though I know not its measure.
I will come and proclaim your mighty acts, O sovereign Lord;
I will proclaim your righteousness, yours alone.

Gratefulness

Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.  Psalm 100:4

Totally missed Thanksgiving week, but that doesn't mean I'm any less thankful.

12 years ago, Thanksgiving week, Emily and Abby were diagnosed with Cerebral Palsy.  They were 10 months old and I sat in my bathroom, away from family in town for the week, as I listened to the neurologist on the phone explaining the latest MRI scans.  Both of my girls had extensive brain damage from lack of oxygen and would be disabled for the rest of their lives.  I hung up the phone, dried my silent tears and walked through Thanksgiving completely numb. 

I already knew they couldn't sit up; I knew they weren't grasping toys.  They weren't crawling or rolling over.  I tried to tell myself that they were the same children I had loved and cared for the day before.  I just had new information.  I didn't give myself an entire minute to think about it that week.  I had a giant dinner to make and babies to take care of.  I had family and friends to show up for.  I was tired of grieving.  I refused to do it again that week. 

The next week, when everyone had left and the sole responsibility was the care of my sweet girls, it hit me.  I can't fix this.  They are not going to be alright.  There'd been no miracle, even though we had all prayed so faithfully.  It was real, and I had lost them both. 

Emily and Abby

They looked so perfect, it was almost unbearable to see those little faces and know that behind those smiling mouths and little brown eyes was a brain that could not tell them sit up, feed, or calm themselves.  I looked into the cribs at little fuzzy jammie'd bundles and wondered what on the hardest of days I still ask.  How can I hold such sorrow in my arms?  How do I grieve the living when so much has died?  Is it possible to love and lose equally intensely?  Simultaneously?  Where do I find a grateful heart in this train wreck?

Oh how I love the way God answers the deepest, darkest questions of the heart. 

The truth is I can hold them and grieve them.  We have all lost a great deal, but gratefulness abounds because I can hold them.  They are there, warm and alive.   They answer me, even if it's only with yes and no.  They know me.  There is unimaginable love between us all;  given and received.  Holding sorrow in my arms is nothing compared to the pain of empty arms.  My kids smile and laugh.  They hurt and cry.  They are complete and full.  And yes, they have known loss and suffering.  Feeling the comfort of my God and peace that I can not understand opens my world and my heart to gratefulness beyond comprehension. 

Not everyone will have children like mine.  You may not face holding such sadness in your arms, but almost every parent at some time in their child's life will hold sadness in the heart for them.  Though the source of our hurt will always be different, the source for our hope is entirely the same.  All of us have a capacity and I will go out on a limb and say a responsibility to gratefulness.  God gives us each the strength and the grace we need as we need to not only deal with life, but to experience the richness and beauty of the experience, even in the sorrow.  In children like Emily and Abby, we should see the blue print for our faith.  Brokenness, grief, honesty, healing, restoration, peace, joy, gratefulness.  The journey of my children has walked parallel to the journey of my faith.

Where are you walking today?  Can you see that no matter the outcome, each moment of life and love is a moment for gratefulness? 



Pressure Point

We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed.    2 Corinthians 4:8-9

There's a song lyric that asks "how many times can I break til' I shatter?" 
It's an interesting question that I find myself singing more often than I'd like.   

The simple answer is that I can't shatter, even if I want to; but sometimes I break and sometimes my kids break. 

Today, it's Abigail. 

My sweet Abby.  She's really the sweetest girl you'll ever meet.  She's also the most demanding child ever created.  She can make me absolutely nuts, or smile just thinking about her. 

Abby has this sweet way of wrapping her little hand around me to give hugs that melts my heart.  She also needs lots of attention and "lovey's".

The last few days this Sweetie of mine has been having some trouble with her foot.  The way she holds it makes the arch point outward and her big toe goes way in, like a bad bunion--but not.  Her foot has been like that forever, it's always red and something we keep an eye on, but somehow over the few days it went from red to white, to open.  A pressure sore. 

For immobile people, pressure sores are a constant source of concern.  For their Mamma's, it's a source of concern.  My baby broke.  I pulled the band-aid off her foot this evening and there it was; red, open, and just plain mean. 

I cleaned it, put medication on it, wrapped and gently placed it on a pillow, but it hurt her.  Her hands clenched and shook; I could see the hurt in her face.  She's so brave though.  It would be so much easier if she would cry or kick or something.  It's her bravery that breaks me.  It's my pressure point. 

Watching her stoically endure painful, difficult procedures breaks my heart--I think I overuse that phrase, or that phrase overuses me, I'm not sure which it is.  I have this underlying feeling that my girls go through so much, there should be a place where enough is enough.  I want to throw my hands up in the air and ask 'WHY?'  Isn't it enough that she can't get up and walk around?  That she can't move her foot when it's being rubbed open?  Isn't it enough that she can't say "momma, my foot hurts"?  Isn't it ever enough? 

It seems like a big fit over a boo-boo on her foot, huh?  It's really not.  She is only twelve years old and these things are very difficult problems once they begin.  It's frustrating and sad.  Seeing her hurt when life is already so hard makes me feel like we're running a race that we're losing.  I feel like no matter how hard I try to keep her healthy and safe, there are things I miss and things I can't control.  This, I missed.  I could have done something differently for sure.  I will now, but we have to heal a "break" too.

Pressure sores heal slowly because the skin breaks down on the inside before it opens on the outside.  Once that happens, it has to heal from the inside out. 

I need to heal that way too.  I'm like Abby's foot.  There are so many things always going on inside, causing pressure and concern.  Things that can't really move just because I feel the pain.  Life that goes on even when it hurts.  Wounds that can't or shouldn't stay open. 

Pressure points. 

I honestly can't imagine how anyone could handle all of it without a belief in God.  I pray to Him, cry, beg, sometimes get angry with him, but at the end of every pressure filled day, I trust him.  I believe that as my brave daughter shakes with hurt,  he comforts her.  He waits for me and understands what it feels like to watch as His child suffers.  I know that as I struggle to shoulder so much responsibility, I don't have to alone.  I can bring this broken life of mine, and lay it down where there are no pressure points. 

What are your pressure points?  Do you know that there is a place where you can find rest?  There is a place that is calm and still in a pressure filled world.  Oh, how I pray today for healing, from the inside out.

What I see

I've enjoyed a nice day with my girls--nice and quiet; making soup, baking cookies.  Just the way I like it.  Calm.

Emily had three days without having too many seizures.  She completed some school work, and stayed at school all day.  There are just no words to describe the weight a parent carries when something's wrong with their child.  I don't even recognize it until there's a break, or something changes and some perspective has an opportunity to creep in. 

Emily has been picked up from school nearly everyday for the last four weeks on the days she's even been able to make it to school.  Her seizures have been so frequent that we haven't been able to take a breath.  She constantly stares off into space, her eyes may roll back in to her head, sometimes she just doesn't respond, or she might make a kind of smacking sound with her mouth.  They'd been lasting 5-10 seconds, but going on for hours.  Last week they came less frequently, but lasted 1-1/2 minutes.  We are constantly on edge, carrying emergency seizure medications every where we go.  We put a video monitor in her room so we can see her at all times.  Any time I'm not available, someone has to be on call to pick her up if needed. 

The longer this goes on, the more I'm afraid that it isn't going to end.  Emily is tired and we can see the toll it's taking on her too.

Then we have a day.  A day when she did well at school.  Opening her notebook and not reading about another bad day was such a relief.  Finally, just when I was completely desperate, a good day.  She was wiped out when she got home; she went straight to bed and only got up for dinner.  I didn't care, I'll take it.  Then Friday, another good day at school, but even better--she came home happy and ready to play.  She stayed up the whole day!  Saturday....I didn't know if it was too much to hope for, but another good day.  She went to the park, played with her dog and had an all around good day.  Maybe a few small seizures on Saturday, but not bad at all.  

Today hasn't been a good day.  Lots of seizures, many people at church saw them too.  A few good days give me hope for more.  It's like the clouds open up for just a moment and I can see the sun again.  I remember my daughter, who I've been missing.

I know how hard it can be having kids with disabilities.  I've lived with various degrees of intensity for so many years now, but I am always surprised when were in the middle of it all.

I started this post last week, so...

This week, each day, I think is a better day than the day before.  We seemed to have settled into a routine with a few seizures on most days, but not for hours on end like before.  She has very few good days at school.  She's tired and nauseated from the meds, and the work is just never ending.  We're still not sure what we're going to do with that situation, but we have a health care meeting at school this week to try to figure it all out.

I'm not sure I ever feel more loved or seen by God than when I'm in the middle of a dark time.  It's a light that can only shine in darkness.  It is peace and comfort when those two words shouldn't quite fit.  I am tired and yet I know that a plan as been in place since before time began.  I trust it.  There is a unique beauty in the midst of sorrow or despair that those of us who believe are given eyes to see.  It is our glorious, ceiling-less God who delights in reveling the depth of His love; it really is a precious sight.

Can you see it in your life; in your circumstance?  It's there, I promise if you look, it's there.

2 Corinthians 4:17-18
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Shining Lights

I’m sitting on an airplane feeling air under the heavy metal wings that seems to miraculously pull me into the sky and home to my children. The sun is setting, leaving orange and yellow that somehow fades into pink across the sky. This is a beautiful planet we inhabit. The clouds below the plane look like little stepping stones that make me think of rock hopping up a creek bed. The view ain’t too shabby at all.

It makes me wonder...what does God see when he looks down?

In the entire universe, He chose this planet, this place in all of creation to form life. Did he look down from heaven and think “it’s perfect”...or could he have created this solar system knowing that this one swirling ball would inhabit life and the praises of his people? In the vastness of the universe; planets, orbits, suns, moons, black holes, and endless galaxies, how can He possibly see me, or why would he want to in light of all there is for him to look at?  I'd bet He can see this amazing sunset from where he sits at just about anytime at all. Somewhere in the billions of stars in the sky, there always has to be a planet turning from its sun.

The concept of an omnipresent God is beyond my ability for comprehension. He lives and dwells in me, walks beside me, filters life for me and desires to do so. He walks with my children and cares about every aspect of their lives. We are important to Him. He is enthralled with the beauty of those He created, ‎ (The King (God) is ENTHRALLED by your beauty; honor Him, for He is your Lord." -Psalm 45:11). To Him, we are each as beautiful as anything else He made (Eph. 1:4 for he chose us in him before the creation of the world to be holy and blameless in his sight).

In all of creation, He chooses you and me.  And then He asks us to shine for him on the earth.  I wonder what we look like to God. Isaiah 60:1 tells us to “"Arise, shine, for your light has come, and the glory of the LORD rises upon you”. We should be shining for all to see. There is darkness all around us. We should look different, to the world and to God.

Lights from the plane.

Seeing the lights begin to show up in the dark as the sun finally sets makes me think of what we're supposed to look like when God.looks past the sunsets and clouds.  We are supposed to shine in this dark world.  The glory of God shining in each of us as believers should be noticeable.  It shouldn't dim as life gets difficult.  It shouldn't slowly burn out as faith gets old and comfortable.  It's a renewable source that we can choose to "arise and shine" in.

It's been such a hard few months for us as a family.  We have struggled with living apart, a new seizure disorder that feels like we're never going to get on top of, college applications for our oldest child, and countless other pressures.  There are moments in everyday when that light that is supposed to shine feels far away.  I feel alone and in the dark.  I can't see and don't really understand what is going on.  It doesn't feel like I'm walking in light.  That's when faith steps in and the promise of his words speak to my heart:  Ephesians 5:8  For you were once darkness, but now you are light in the Lord. Live as children of light.

As a human, I desperately desire to see where I'm going.  The last three weeks filled with seizures and every precarious moment in between are not the vision I had in mind.  In those times, I may find that I'm looking out of the window of a plane and see the sun go down; I see lights turn on in homes that I pray are filled with light that man can't make and I suddenly feel noticed and cared for by the one who made it all.  I am blessed by Shining Lights. 



Believing Truth

Monday has rolled around again and I can't believe I haven't posted anything since last Monday. 

Time flies.  But so do praises.

This week I am praising God for truth.  The truth of His word that does not change, confuse, or falter.  A truth that breathes fresh in to my life every single time I make the choice to read it.  It never fails me. 

I am doing a bible study right now about spiritual armour of God.  The Belt of Truth is the subject of week one. As I studied this week I discovered that we believe a whole lot of lies about ourselves, people.  We really don't even need the enemy to plant them because we are more than willing to tell them to ourselves. 

I'm not good enough.  If only I was a better mom; a better housekeeper; more organized, then I could have time for God.  If I worked harder.  I don't know enough about the bible to ever mention it to another person.  I can't do it. I don't have any special gifts or talents.  I can only do what I'm doing.  I can't handle it.  Everyone is better at everything than me.  God can't see me.  He doesn't care. 

We believe it all.  At one point or another in our lives have all probably felt unworthy, unloved, and just plain old not good enough. 

Today is Praise Monday though, and we don't have to believe those lies.  Today, we praise the Lord because each one of us is fearfully and wonderfully made.  Because the Creator of the Universe turned His eyes to you and molded and shaped and LOVED you into existence.  Today there is a truth that wants to replace the lies in your life and mine. 

Ephesians 1:13-14
And you also were included in Christ when you heard the word of truth, the gospel of your salvation. Having believed, you were marked in him with a seal, the promised Holy Spirit, 14who is a deposit guaranteeing our inheritance until the redemption of those who are God's possession—to the praise of his glory.

Did you know that you are marked with a seal?  God sees you and loves you.  He is still molding and shaping you everyday of your life.  When you hear His truth and let it settle on you, there is just no way to walk away unchanged. 

This truth is praise on my lips today. 

Life is really hard.  I fail often and fall far.  Sometimes I believe the lies of the world that turn my head and my heart away from my God.  I get scared and just stop.  Then I remember that I have an inheritance with the King of Kings.  I am sealed and redeemed.  
Every minute of every day we can look anywhere and find reasons to complain or reasons to praise God.  When we turn our eyes to the reason we should complain and see praise, we can say "it is well with my soul" and experience a new peace; truth in our lives.


P.S. My girls are doing well today and so for today I offer praise. Emily started on the third combination of seizure meds on Friday after the first two didn't work. I think she's doing better. It's wonderful to see her moving back towards being herself again.

Begin with Praise

1 Chronicles 16:36
Praise be to the LORD, the God of Israel, from everlasting to everlasting. Then all the people said "Amen" and "Praise the LORD."

Last week I decided I would try to organize my blog a little.  I thought that I would start every Monday with praise.  I want to make a conscious effort to start each new week with praise and gratefulness instead of the ugh...Moonnndaayyy I usually go with. 

 

This is the week that the Lord has made, I need to rejoice and be glad in it. 

 

I'm thankful the Lord placed this on my heart before last week actually happened.  I haven't had an amazing week.  It's been hard, a little sad, and I'm kind of tired. 

 

THAT is exactly why there should be praise on my lips.  It does not matter what is going on in your life, there is always cause and expectation for praise. 

So, let the praise party begin!

One major praise of my family is that our oldest daughter Hannah was accepted into the college of her choice, Pfeiffer .  We are all so excited for her and look forward to what God has in store for this wonderful girl of ours. 

 

I am thankful the weather has cooled a bit here in Florida.  This is one HOT state.  Warm weather most of the year means that August is brutal.  A few 60 degree mornings just make me happy. 

 

I'm thankful for our home; a safe place for my children to grow and develop.  I am beyond grateful that God has allowed me to be home each day to watch that happen. 

I'm thankful for the people in my life; they bless and renew me with their love and prayers when I am struggling and concerned. 

I'm thankful that God hears my prayers and answers them, even when I can't understand His answers.

Right this very moment, I am thankful that there are no dishes in my sink.  I do not like Mondays with dishes to clean or a messy house from the crazy weekends. 

As I begin to focus on all of the things in my life that I have to praise God for, my heart fills with gratitude instead of the sadness I had been feeling.  Emily has been having lots of little seizures this week, too many to count.  It weighs heavily on my heart everyday.  She hasn't been able to make it through the any whole day of school feeling well.  There are a bazillion other things going on in life that I need to deal with. 

How easy it would be to write the post I wanted to write about how hard this is and how worried I am.  But today is begins a week that I choose to start with praise.  I choose to open my heart to God's love and provision, even in the midst of so much concern for a child. 

Are you ready to begin your week, whatever your week might bring, with a grateful heart?  Can you spend a little time meditating on what is good in your life instead of focusing on the problem?  Start your week, your day, and your life with praise in every circumstance.  We have each been given a gift unique to human beings; the ability to choose.  Today, join with me in choosing joy and praise. 

 

Simple acts of faith

There once lived a young man, the youngest of eight sons.  His older brother's fought wars and defended their land.  This young man tended sheep for his father.  He cared for and protected the animals from predators and was sort of the "errand boy" for his aging father.

One day he was asked to check on his brothers on the battlefield and bring them food.  He did as he was asked.  While there, he heard that there was a giant; a fierce warrior among the opposing army challenging and taunting their army of daily.  This young man found out that if this giant could be killed, they would win the war.  If they lost, they would become slaves. The entire army was greatly concerned about this, as they didn't believe anyone could defeat the giant; this battle was simply too much for one person to handle by themselves.

This young man wasn't an ordinary kid, though.  He trusted God with his life.  No matter how big the obstacle, he knew that God was in control.  So the tiny shepherd stepped up to fight, not with armor or swords, but with faith and a slingshot.  The giant laughed, thinking this unarmed kid was easy to defeat.  Our young man stepped up to a situation far bigger than he, and used the only tool he knew how to use.  He shot a single stone and knocked the big guy out.  The giant (Goliath) fell to the ground, where he was killed.  This frightened the opposing army and the men ran for their lives. 

Our young friend, David, loved God with his life and eventually became King of Israel himself as he proved himself to be a faithful servant of the Lord (1 and 2 Samuel). 

Is there a battle front in your life?  What do you have to face with your faith as your only weapon?  Is there a giant taunting you, telling you there's just NO way you can be victorious?

Seizures and fear of losing my daughter are that front line to me now.  This situation is a giant that I don't know how to defeat.  I feel like I am not properly armed or equipped.  It doesn't seem safe.  I am out of my league. 

The fate of Israel is not on my shoulders, but the life of my daughter weighs heavily.  Seemingly simple acts of faith are stretching me further than I'd like to go.  David didn't agonize over not being able to see how the battle would end.  He knew God was on his side, and he wasn't worried.  What David, Emily, you, and I have in common is that when God asks us to do something, anything HE asks us to do, we can do. 

David faced down a giant with a slingshot.  He trusted that God had equipped him.  I lay my child down at night feeling like any time she's not in my arms, I can't be sure a seizure won't pull her face into a pillow and stop her breathing.  I put her on a bus in the morning and send her to school not knowing if she is safe, if her life is changing, or if her brain is being attacked.  What was simple faith, the general belief that life will stay relatively unchanged from day to day, has become a "Goliath-sized faith".

I look up at this huge situation that has absolutely changed our lives in a single day, and my eyes could easily stop there.  I could easily stay focused on the giant.  I do focus on the giant in the room.  I am afraid of it.  I've devoted my entire life to keeping my girls healthy and alive.  Now there is something that we can't control changing and threatening her.  Today has been a good day for her, the first in a while.  I hope and pray that we have another one tomorrow.

Trusting God means that I have faith in his sovereignty over any place I find myself in.  Really trusting Him means that my need to control and fix, and in this case protect, lays down, steps aside and lets the same King who appointed and delivered a young David, walk in the center isle of my life. If I let my eyes continue to drift up, over the head of giant, I can see that there is so much more.  All of the heavens and earth, the Creator.  The one who can see it all. He watches my girls and gives me the strength I need to face whatever comes my way. 

I will probably never understand all of this.  I will always feel sadness and loss.  I grieve every moment of suffering my children endure.  Even as simple acts of faith become giant leaps, I will trust him.

Psalm 62:8
Trust in Him at all times, you people;Pour out your heart before Him; God is a refuge for us.

Emily update

It was nearly 30 hours before Emily returned to normal.

Yesterday I wrote in the middle of a situation, which I rarely do.  Today is a little clearer, though not particularly less scary. 

She is still nauseated, tired, and prone to more seizures as she recovers.  We had a good night last night and we came home today; for that I am grateful.  I'm grateful that we haven't had to live with seizures her entire life.  I don't know why they started now, so I just pray that we will not have more days like the last few again.  I also pray for those who go through this on a regular basis.  It's very hard on everyone involved. 

I can't update without saying something about my girls--they were awesome.  I am so proud that I can count on them. 

Hannah stepped up and was truly a second adult that I absolutely needed.  She held her sisters hand in the ambulance and helped me in the hospital and at home.  Sarah packed a bag for me, bless her heart.  She filled it with snacks, my bible, toiletries, shoes, and clothes she put in Ziploc bags like I did for her at Girl Scout camp.  It was entirely too much stuff, but precious. 

My sweet Abby missed me.  It was hard on her because her Daddy is away too.  Abby had to make do with helpers, and although she didn't like it, she did great. Usually when we go through these things, Jeff and I switch off to keep home as stable as possible. This time, the kids had a lot of adjusting to do and they did so very well. 

I have no words for how much I love and appreciate my church family.  Lucy for always being there for me, and for bringing that giant bag Sarah packed to the hospital and bringing Hannah home.  Amy for the precious gift of your time and thoughtfulness.  My family and church friends for praying for us faithfully.  Without each of you, I couldn't have done this. 

When Jeff left, I knew difficulties would come our way, they always do.  This was harder than I imagined for him and me.  We both just continue to trust that we are doing the right thing and praying for guidance and strength to move through it all.  I am so thankful to see how God has equipped our family for this challenge! 

Now, I'm gonna take a nap :)

Fear

I'm sitting in the hospital with Emily watching numbers on the machine.  Numbers that tell me how she's breathing, the way her heart is beating, and if her blood has enough oxygen.

Watching the numbers wishing they could tell me something they can't.  Is my daughter alright?

Yesterday she had 3 hours of various seizure activity.  From convulsing, to staring, to simply closing her eyes and being unresponsive.  She's not seizing anymore, but she's not herself yet either.  I'm told this is normal for what she's been through.  She's irritable and tired and doesn't really want to be Emily right now. 

Through the very difficult night we had last night, her eardrum burst.  It was probably caused by injury during the initial seizure.  It swelled and at some point perforated.  I was horrified to see my child bleeding from her ear.  Let me tell you, that is not a comforting symptom. 

Even though she was recently diagnosed with a seizure disorder, it didn't feel real.  Somehow I still distanced myself from this moment I'm in now.  I thought I would just give her the meds so I didn't have to worry about it anymore.  I thought it wasn't a big problem. 

Why would I think that?  Seizures can harm her, they damage brains, they cause confusion, they change her personality.  They scare me.

What if she doesn't come back?  We've lost so much already.  Anything else feels like too much. 

I recently read the blog of a father sharing his feelings about his dying child, he wrote: "everyday, like Isaac, I offer my child to God, and so far everyday He has returned that gift.  I know that one day I may have to follow through".  Those words have stuck with me.

Emily has always belonged to God.  I understand that.  It's not only about knowing that she will be alright--no matter what-- it's that I have to crawl up on that alter with her and offer my heart to God, knowing that even if it breaks again for this precious girl, He's there and He cares.  Lay my faith down where it counts.  I am scared that my daughter will die.  I am afraid that I will have to live without her in this life.  I'm terrified that she will lose more function than she already has.  I'm scared of seizures carrying her away.  I'm afraid of living my life in fear.

I say things like 'fear is not from God' and 'fear and faith can not live in the same heart' all the time.  Maybe that's not true.  Maybe sometimes fear rises up so that faith can push it down; maybe God allows some fear to remind me that He is in control; to show me His hands when I just don't understand.  Maybe fear is just my human response when I am so out of control, and when I can't help her.  Faith fills in as a Spirit response reminding me again that there is hope in every situation and all thing work together for good, even when I can't see it.

I know Emily is alright, her days have been numbered since the beginning of time, as have mine.  I also know that as I have sat by her bedside and held her hand through nearly 13 years that sometimes that's all I can do.  Focus on faith.  Pray for her. Surrender what is not really mine to give.

I don't have answers here, just a blog.  Just thoughts, words, and feelings---my reality sent out into cyberspace--and the Truth of a God who loves us all, no matter what.

Running

Hebrews 12:1

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.

About a year and a half ago, I started running.  I can't believe that I even wrote that sentence. 

My precious friend Lucy asked me to run with her years ago and when I tried it I thought I felt my lungs bleed.  It was not fun. So when I committed to a 5K a year and a half ago, I was surprised to find that I actually enjoyed the way it made me feel.  There is this really good tired when I'm done and the sweat that should just be gross actually feels good, almost cleansing.

I'm inconsistent, slow, tired, and struggle through almost every step.  Obviously it fits perfectly into my life.

There's something mentally freeing  about walking out the door and running away from it all.  Literally hitting the streets and just running.  An emptying occurs in that first mile out where all I can do is let all the stress and worry of the days drop along the road.  Imaginary littering of everything I'm feeling and my focus becomes my run.

It's equally cathartic as I turn back.  I make it to that half way point and begin to run back to this life.  It's as if in some small way I get to choose to come back to it all again.  It's harder on the way back.  I'm tired, achy, and not sure if I can make it, so my goal becomes home.  I think it's always good when your goal is home. 

The flaw of running for me is that I competitive and comparative.  People run past me and I want to look like her or be faster like him.  I wish I didn't breathe so hard.  I want to look around and run their race.  I tell  myself over and over to run my own race.  I can't run for them; they can't run for me.  Naturally that easily correlates to life.  Looking around, peeking in the window of another and thinking, Man, I wish that was my life...it looks so easy. 

As I was running yesterday, I had that strong urge to turn around; to look behind me and see what everyone else was up to.  Lot's wife turning back toward Sodom and Gomorrah popped in my head.  Wow, do I really need to go Old Testament when I can barely breathe?  Apparently, Yes!

I always thought the way Lot's wife was turned into a pillar of salt ( http://www.biblegateway.com/passage/?search=Genesis%2019:1-29&version=NIV)  was sort of harsh. But really, she knew of the destruction going on behind her. God had actually sent angels to deliver her family to safety.  She had witnessed all the sin in that city and she was told not to turn around.  I think it's human nature to look back, and that's probably the point.  When God has instructed and equipped us for His purpose, our nature should become His will.

I still wonder if I would have looked back at my city being destroyed.  I'm only running down a little street and I want to look back.  I want to watch what's happening out there.  I look back at the life I had before disabilities came into our lives all the time.  I want to look longingly at other lives that look better to me than my own.

In the case of Lot's wife or me, there is absolutely no good reason for looking back. God specifically instructed every one of us to run the race He set before us.  The one He equipped me specifically for.  Why am I looking around?  Why am I wondering about what everyone else is doing?

I may not turn to a pillar of salt where I'm standing, but it's equally destructive to be turning around all the time.  It's discouraging in my physical run and in the life I'm running.  I have to set my eyes on the only goal that matters.  My God has set a course before me and I want to hear the words "well done" when it's all over.  When my eyes are where they belong, I will not look around and my mind will not stray.  I will finish MY race.

What about you?  Whose race are you running?

A Lovey Place

Last weekend, I had the best day I've had in a long time.  I relaxed on the beach with friends and family; I let the waves carry me to shore.  It's definitely a lovey place for me.  I feel so peaceful and hopeful there.  I'm very small in this big world; looking out over the vast, seemingly unending ocean confirms it.  It comforts me when I reminded of how truly great our God is. 

The only thing wrong with the day was that the twins were not there.  They just don't like the beach.  They are hot, there's no where for them to sit comfortably, and the waves are just scary for us all--it's certainly not their lovey place.  I left them at home with the sitter.  I always feel torn about having a really good time with Hannah and Sarah and leaving the twins behind.  Even if it is best for all of us, I miss having our whole family together.

Later that night I had a wonderful dinner alone with my husband.  Long looks and talks that warmed my heart and reminded me that as we celebrated 15 years of marriage we are still in this together.  We are still in it for each other.  It's so hard to sift through the children, house, bills, animals, friends, family, and just general life and find each other.  I have to remind myself that he's the same guy I looked up into the stands of a minor league baseball game and noticed in the crowd.  The guy I didn't particularly like when I talked to him for the first time more than eighteen years ago.  The guy who perhaps accidentally picked up my hand and walked into a life with me that neither of us could have imagined.

The guy who held on.  The funny, smart, distracted, sometimes goofy guy who stayed.  He fell in love with all of his girls and even in our hardest days when the kids are screaming and the house is a mess and the world is on our shoulders, he stays.  He willingly works hard for our family and makes me want to work harder. Honestly, sometimes I wonder what in the world either of us is doing here, then we have a day, a dinner, a look, and we connect. I remember that God joined us together and I hold tighter to my husband. 

I certainly don't have a perfect marriage.  I can say without a doubt that we do have a purposeful marriage that we have each invested everything we have in.  I love that I can sit across the table and feel genuinely happy that I married him. 

When little, tiny, 6 week old,  NICU Emily was diagnosed with cerebral palsy, the Neurologist at some point during his colorful diagnostic recitation of our new life told us that divorce rates for couples with children with disabilities is around 80% and we should be careful.  Divorce rates?  Disabilities?  What?

I've thought of those words many times over the years.  Times when my marriage has been a challenge and when it's been a joy.  I thought of the times I opened my heart to him, no matter how broken it may have been.  When I have been disappointed in him, in life, or in myself.  I think of those divorce rates and wonder how it is that I just looked across the table at the same man who held my hand as a doctor delivered news that changed us forever, and against all odds, still holds on.

One word.  God.

He changed the way I thought of marriage.  He softens my heart when I am hurting and long to harden it in my human efforts to protect myself.  He opens my eyes to the way my husband cares for our children, even when it's not my way.  He whispers His love language, which is love itself into my life.  He opens His word and His promises to reassure, when I just don't know.  He allows me the joy of witnessing my husband's faith and  family leadership grow.  He allows me to look into the eyes of our four daughters, each of whom love their Daddy uniquely.  They see him as their world.  When I look at my marriage through God's eyes, how could I not stay?  There are no divorce rates or statistics that can separate me from a perfect love that teaches me to love.

An anniversary gift given to us first by God, one we freely give to each other, and re-gift to our children. 

A Lovey Place.

New News

 Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

I spoke on the phone with my friend last Thursday and told her that Emily had a neurologist appointment the next day.  I spent about an hour explaining how very, very sure I was that Emily's 48 hour EEG was normal; and that even if they [the doctors] saw a little something, there was absolutely no way I was starting that kid on seizure medicine. I wasn't seeing seizures. So I was not going to put her on a medicine that she didn't need. There was absolutely nothing her doctor could say that could convince me to put her on meds. 

All of that means that Emily had her first dose of her new seizure medicine last night.

Partial complex seizures.  Her EEG showed a lot of risk, Which are "spikes of abnormal" electrical activity in the frontal lobe on both sides throughout the recording period.  Day and night.  I could not have been more completely shocked. I'm still processing it.

Earlier this month Emily had a very itchy 48 hour EEG at home.  It was routine follow up because she had Grand Mal (convulsive) seizures at school in June, and last July at home.  I saw those as flukes and wasn't really concerned about it.

Emily having her EEG

I'd be lying if I didn't say it's a bummer.  I never like new news.  A new diagnosis, a new test, a new sickness, or even a new strain of flu.  It's something extra to do, to think of, to follow up on, to watch for.  Anything new in our busy life can easily become overwhelming.  

As is true with everything, this could definitely be worse.  We haven't noticed a lot of seizure activity; for which I am eternally grateful.  Seizures are scary. When the doctor explained what partial complex seizures might look like in Emily, we realized we had likely seen far more than we thought we had.  As much as I didn't want new medicine, I hope it will help with some of her symptoms. 

I asked her if she knew she was having seizures and she said she did.  With only a yes/no response I would've had to have known the right questions to ask her, which I didn't. That is really tough to take. She couldn't tell me and I couldn't guess.  I thought she was just being irritable or cranky.  She's already a little better on the meds, so some of that crankiness may have been some part of a seizure cycle.  I probably put her in time out for seizures before. 

She began complaining of headaches and generally not feeling as well a little more than a year ago.  I took her to the doctor and she had a CT scan, but no one suspected the possibility of  frequent little seizures being the problem. After we knew, she said she never had head pain, she just didn't know how to describe what she was experiencing (the word headache is on her computer she uses for communication).  She wouldn't have felt the seizure itself, but she may have realized it was happening and felt tired and cranky afterwards. 

I know that she is the same child, and God is the same God, and I am the same flawed parent.  This is just new information. Cerebral Palsy is not a progressive disease, but it doesn't ever get easier either.  We wait and we hope, but we also understand that new news comes frequently in our lives.  The only thing I can ever be absolutely certain of is that we are never alone and God is never surprised.  He NEVER gets "new news".  As I am I surprised and saddened, He is waiting to comfort.  There is refuge in knowing that my hope and my daughter rest in the arms Jesus. Refuge in being sure that the one who knows all, knows me. 

Can you hear me?

Okay ya'll, I've got to put something down on this here blog. 

I have literally started about ten, and leave them unfinished.  I have a ton of things to say, I just can't narrow all that's going on in our lives down to just one.  Me and my all over the place head--well it's really my all over the place life.

I've been writing a whole lot lately; just not here.  As I began to write, I noticed that I always spell the word disability wrong.  Like, seriously, ALWAYS.  What is that? Some sort of weirdo brain retaliation against a world I kind of wish I didn't know about. I really know how to spell it, but I unconsciously type it wrong.

Each time I hit the space bar after the word the squiggly red line pops up. I make myself go back and re-type it. It's a silly little mistake that seems to have become a habit. 

I guess it's because I've been reflecting on the diagnosis lately.  I am writing about the early years when Emily and Abby were babies. It's been incredibly hard to go back to that place. Remembering clearly the words that changed my life. The way it felt as that frozen moment in my life hit me like a fist again. Tears roll down my face as I remember the way it felt to hold and rock my baby, so damaged and so perfect, all rolled up into one pink blanket.  And the consistently misspelled word that unfortunately jumped in to the rocking chair with me and that child. 

That amazingly "misspelled" girl of mine started middle school this year. She is completely disabled. Oh looky there~I spelled it right.  She is so very physically impaired.  She was also just doing her science homework and told me using her computer that the lithospheric plates float on the asthenosphere.  Who would have known?  I am one proud mama.  Watching my child turn her head and hit a button with her face to tell me an answer I didn't even know is amazing! 

Thinking of that broken hearted mommy in the rocking chair, I wish I could go back and whisper in her ear, "hey girl, you are gonna almost burst with pride in that amazing girl your holding one day!  You are still gonna spell the word disability wrong, but your going to be alright."

No doubt, God tried to whisper that to my heart then too. Sometimes our own hurts and losses scream so loudly into our lives we can't hear the truth. I really didn't want to hear that I could be alright with a disabled child. I wanted to hear that God would heal her; that He would change our circumstance.

It's so easy to let our own thoughts get louder and louder as His words consistently whisper in the background, over and over waiting to comfort, waiting to be heard. Sometimes I have to remember as I cry out to then quiet.  To listen.  To wait. 

He is definitly speaking into my life, and I am learning to listen. What about you?  Can you hear Him?

Mental health?

I took what I hoped would be a mental health day and spent some one-on-one time with my sweet Sarah.  I really should have known better than to call it that because of course I ended up thirty feet in the air on a ropes/zip line course.  As of today, I am diagnosing myself with a previously undiagnosed fear of heights. 

I don't like flying, but I thought that was the whole terrorism/falling out the sky thing.  Apparently, there's more to it than that.  Standing on what appeared to be a much bigger platform from the ground, giving a whole new meaning to the term "tree hugger", Sarah says "you're doing great Mom, but you have to let go"!   She has this awesome sweet way of just cutting to point.  To be fair, she and I were both a little afraid, but we made it through.  She thinks she had the best day ever, I have rope burn from holding on to that sucker as hard as I could.

I really thought of this day as getting a little break from Emily and Abby.  They are so ready for school, and let me just tell you...I am right there with ya sista's.  I love them to pieces and this has been a very good summer for us but I am just going to get real.  I am sick of putting food in another persons mouth.

There I said it.  I am afraid of falling to the hard, unforgiving earth and chose walking across a steel cable to feeding my kids.  Wake up, bottle/tube feeding, breakfast, snack, lunch, bottle/tube feeding, snack, dinner, bottle/tube feeding, bed.  Day in and out.  Every single year at the end of the summer that is my complaint.  I am sick of feeding children.  (Okay seriously, in my heart of hearts I am grateful to God for the food and their ability to eat it, and my ability to lift my arms and give them what they can't give themselves)  But, I am no martyr and I do have those days where I would consider strapping a feed bag on them if I thought it would work. 

They will go back to school in a little more than a week and some precious soul will lift that spoon for me and feed.  My girls will be happy to eat for someone new and exciting and they will not have been bored all summer where the most fun game they can come up with is "let me spit my food out and see if my mom can catch it before the dog".  

There are many, many joys to this life, but some I just don't love as much as others.  I will probably feel terribly guilty and delete this post later, but that's what I'm thinking now. 

What's in your life that you're grateful for, but just down right get tired of doing?  Am I really all alone here?

She Speaks

I had an amazing time at She Speaks!  I learned soo much and loved meeting the amazing women God brought together.  We serve a mighty God!  I realized that he wrote the 608 stories of the women that attended the conference.  He writes billions more everyday; He is present in every single one. I love the way He opens himself to each one of us uniquely.

It was exhausting though-- I suppose intense, information filled weekends usually are. 

Before I left for She Speaks, I prayed a prayer that I'm sure many of the women who attended the conference prayed.  I wanted God to give me some direction about what I should be doing now.  What do you want from me Lord?

On the last day of the conference, I spent some time in the prayer room.  It was a precious, quiet place that seemed to be filled with reverence for God.  I brought my bible and my open heart in and sat quietly as the Lord spoke scripture to my heart. I wrote down my experience, prayerfully grateful for His Word. 

After prayer, I made way to the last general session.  It was a wonderful time of worship, and then we had an opportunity to go to the cross to pray and pick up a verse. 

As I approached the front, I began to think of how painful it had been to walk the path of this life.  The feelings of grief as I held my girls and knew that I had lost so much; thoughts of all they had lost came flooding back. All of the sorrow and disappointment I had experienced rushed into my heart.  I began to think of how hurt my feelings had been that God had allowed my children and our family to go through so much. What I should have done was lay it all down at the cross and allow God to take it.  I didn't because the phrase "have you forgiven Him for that?" popped in my mind.

I prayed, took my verse (Romans 8:38-39) and then went back to my bible, confused by my thought of forgiving God.  I looked for a verse that would in any way support the possibility of forgiving God for hurting my feelings, even if it was necessary.  The only thing I could find was in Mark, where it says to forgive anyone you feel may have wronged you.

It still didn't sit quite right with me, so I asked my speaker eval leader, who directed to me to the biblically knowledgeable Wendy Blight who reminded me that forgiveness implies a wrong, and our sovereign God does not make mistakes.  Her sweet direction was so helpful.   

I thought about her words on my 9 hours drive home and realized that a few things were going on here:

• God had spoken to me in scripture that morning.  That was all I needed to hear.
• I was wayyyyyy to tired to be opening my mouth.  A little sleep cures a lot of confusion. 
• I knew there was something in my own thoughts that didn't ring with truth, and I asked.  If you are thinking something that doesn't seem right, ask questions.  The Holy Spirit in each of us is our guiding voice and it sits well with our soul.  When it doesn't, allow God to speak truth in to your life.
• This may be the most important thing the Lord was teaching me; I went to the bible to support my thought. Although we must test our thoughts to the word of God, I read a verse out of context and thought, mmmm, maybe that will do.  WRONG.  All of my thoughts should come from His word, not the other way around.  My life has to fit into the word of God; I can not squeeze the word of God in to my life.  This is a very important point in my life as any ministry from speaking to raising children has to begin as HIS thought. 

If I took one thing from the sessions, speakers, and sweet women I met it would be that I have to pour my life into Jesus and His word, anything else He calls me to do should be drawn from only His well.  My life, my story, anything I do or say holds absolutely no value apart from Him.

I adored the presence of the Lord, and the glow of Him in the women I met this weekend.  It blessed my heart to see Him so abundantly.

I am also thankful I have my family to come home to. We were told to love them tenderly when we got home, so off to love I go.

More

I'm preparing to leave for She Speaks, a speaker/writer conference I've wanted to go to for the last few years.  I am so excited that I have the opportunity to do so this year.  I have to write a 3 minute talk about my story and a five minute teaching talk about a bible verse.  The bible verse was easy, anything about my story in a few minutes is impossible. 

It doesn't help that it has been really, really hard taking care of the girls alone lately.  Because it's summer and I have them all the time and going to North Carolina was so much work, I'm feeling tired and overwhelmed by it all.  I am so small and yet I feel like I live a giant life, I want to shine a light on my God who is infinitely bigger than my giant life.  I should be able to say that, but instead I only feel incredibly inadequate.

This morning, I was giving Abby her bottle.  Yes, she still gets a bottle.  It's the only way she can drink enough.  I even have to cut the nipple to make it come out faster because otherwise she wouldn't get enough fluids.  Anyway, Abby NEEDS to know the plan all the time.  She drives us all a little nuts with it.  Ma (more)  ma (more).  Everyday, over and over we tell her what's up!  Her version of "more" is one of her few words.  We respond to her "ma" with: you want to know where everyone is?  You want to know the plan?  "Ya" she says.  Tell me more Momma, where is everyone?  What are they doing?  Tell me again Momma, "Ma".  So I'm feeding her and telling her about our day and she keeps asking for "ma". 

I'm already feeling tired of doing it and it's only 8:30 in the morning.  I ask her "you always want more Abby, don't you?  More-- where is everyone?  More-- what are we doing today?  More-- what's the plan?  More-- what's for breakfast?  More, more, more, more, more, more.  You just want it all, don't you?

She looked up and answered me.  "Ya." 

That's it.  Simply Yes.  I want more.  I want you to tell me what I want to know.  I'm not sorry I want to know, I don't feel at all bad about asking a thousand times a day.  I want to know it allll. 

Part of me is envious of the simplicity of her need and her answer.  I'm feeling overwhelmed.  Why is it that I can't just say, I need something...anything.  I need a minute.  I need prayer.  I need grace.  I need forgiveness for feeling so ungrateful when God has been so faithful.  I need "more" sometimes.

She needs something and she asks for it.  She expects to receive it.  She's not disappointed if it doesn't come, she just tries again..."ma".

Emily doesn't waist much time on the words, she just screams at me.  "Ask me nicely, Emily.  I want to help you."  Ahhhhhh!  It's this sort of NOW!  She's still asking with expectation, just a little louder.

Maybe sometimes we all just need a little more.  Maybe we just need to know how to ask for it.  Pray for it.  Expect it. 

Maybe if I work at it for a while I will be able to squeeze my big life and my even bigger God into 3 minutes.  I don't think I can do it alone, so tonight I pray for just a little "ma", Lord.  "Ma" of you, less of me.  "Ma" of your words, less of my thoughts.  More remembering how blessed I am to be able to speak at all, more being grateful for "ma".

Last Time

Emily and Abby are twelve now, which means that my little girls are really sort of big girls.  I didn't actually realize that was going to happen.  Abby is about 10 pounds heavier than Em and she is also a little longer.  They are both still small for their ages (50 and 60 pounds), but Jeff and I are tall so the girls are looonnnggg.

Yesterday we spent the day at my Sister in Law and her husband's lake house.  It's beautiful.  I don't know if I've ever mentioned it, but I am generally a determined girl.  I think I can do just about anything until I'm proved wrong, and it just stinks when I am wrong. 

I decided my girls, who have no balance and can't always hold their heads up out of water, could still swim in a lake with me like they did when they were little.  There is a dock and the water is way over our heads.  Since Abby was willing to go out with me I started there by putting a life vest on her, a life vest on me and a one on Grandma.  I thought for sure we would be able to float and hang out with Abby in the water and it would be a great day. 

I jumped off the dock into the water, Grandma jumped in the water....we were both secretly questioning the wisdom of our plan at that point as we each had no really control over where we were in the water with our hands busy reaching for Abby.  Our helper lowered Abby in the water, which was really a whole lot higher than I realized and she actually sort of dropped her in.  So now we are three floating ladies in about 20 feet of lake water.  Abby's head of course wants to drop face first in the water, Grandma has her by the waist, I am holding on for dear life to the front of life vest keeping her head out of water.  There is no doubt now that this was a really bad idea. 

We somehow made it over to the ladder, but we couldn't get her up.  We sent for Grandpa to rescue us; he was in the house with the wise Emily who had refused to come out.  Then a boat went by and the waves came, knocking us into the dock and boat.  That was when a bad idea became a dangerous situation that could really cause my daughter harm.  Grandpa showed up then and pulled Abby out of the water, and thankfully life moved forward. 

The first thing I said when we all were up on land was "I guess that's the last time we do that". 

Last times make me sad.  There are so many losses in the life of disabilities.  The loss of so many parts of my child, the loss of my dreams and plans for them, and then the physical losses.  The ability to move through life in the way I want to; the ability for my daughters to move through life and enjoy what is on this amazing planet.  Each time one of those experiences become impossible, which seems to happen more and more as they get older, I feel a little afraid as the world gets just a little smaller for us every year.  It's hard for me as a mother to not be able to offer them what I think of as a full, rounded life.  What I must give them above all else is safety and security. 

It is hard to see a chapter close for my disabled daughter as her younger sister cannonballs into life and begs for more. 

I know in light of eternity, a day in the lake is not even a blip on the screen.  I am thankful yet again that my hope lies in knowing that I will spend forever with my girls healed and healthy.  I will see them run, jump and speak.  I will see them whole; mind, body and spirit.  I will spend eternity in the presence of the God who created them and never again know the ache in my heart of a last time.

Hummingbirds

We are spending our first week in North Carolina with Jeff. He is getting ready for work and I am having my coffee, starting my day. I love my quiet few moments in the morning to wake up, reflect and prepare for the day. We have been here a little more than a day, and already we are moving to the same rhythm we always have. It's as if being apart for two months, knowing we have many more to go, is just an unnoticeable missed step in a complicated dance. I'm thankful for that, but as usual, I am surprised at how completely God has prepared our hearts for this time, and how He has moved our life into this rhythm that makes it easier to endure this time apart.

Yesterday was my first full day here, and a hummingbird flew into the garage of the house we are staying in.  Hummingbirds are so tiny and so busy, whenever I see them, I find myself wishing I was as constant and consistent with my tasks as they are with theirs.  This poor little fella flew around that garage for a good part of the day and couldn't find his way out of the giant door that lead to freedom for him.  Night fell and we noticed him perched at the top of the garage, tired and confused.  He simply didn't know the way out, and inside there was nothing for him. 

My cousin decided that of course the little guy needed help.  Three adults and one hummingbird.  A broom was  put up in the air beside him, which he promptly stepped on to.  Feeling very brilliant for the rescue, we took turns looking at the tired little guy and holding him.  It was a rare privilege to hold such a quick little bird still in my hand.  Deciding it was time to free him, hands open and arms lifted, we waited for him to gratefully fly away.  He lifted off, paused for a moment, and then flew straight back into the garage.  We repeated this "rescue" three times before we realized he was attracted to the light that was on in there.  He is a daytime bird and it was dark outside.  We turned off the light, closed the door, and finally he flew away. 

I've thought a lot about that little bird today.  I've thought about how often my faith is like that little bird.  How lost and confused I feel sometimes, thinking I am going towards the light and security when I am really heading in the wrong direction.  I've thought of God taking me in his hand when I've gotten my own self in trouble; when I'm in the wrong place.  I think about Him gently bringing me out, showing me the way.  Is He as disappointed as I was in the bird when I end up in trouble again.  When I fly to false light; to my own sense of security.  How often I've tried to find my own way out when the hand of the one who sees the whole picture tries gently to hold me and place me in safety.

As a believer, I am a day time girl too.  I know the light.  The true light.  I know the hand to hold onto, the only hand that can safely hold me.  I know that even when he gently sets me in the dark and I don't understand that He is still with me.  I am learning more and more to trust that the light of this world is a false light, and Jesus truly is the only way.  Am I doing enough to be sure that others I try to lead to the true light really see it too?  Do I think it's enough to help them out of the dangerous place and never really notice if they are flying back in?

I feel challenged by that little bird.  Do you?

New Shoes

For the first time in four years, Abby's feet changed sizes and she needed new shoes.  I've bought new shoes for her in the last four years because I wanted to, but in reality she could have worn the same pair the entire time.  She doesn't walk, they don't wear down and her foot didn't seem to grow (fun fact:  weight bearing encourages our bones to grow, so not standing on her feet probably contributed to them being small). 

Abby does not necessarily like change very much, so when she seemed excited about the idea of getting new shoes, I was excited too.  If Abby was going to get shoes, Emily who is a true girl and LOVES shoes should definitely get a new pair also.  So a mall excursion this weekend led to two new pairs each. 

This morning, I picked the girls outfits out so they would look best with the new shoes for summer school.  I got them dressed, fed, and then it was finally time to put the new stompers on their feet.  I  put the last bite of cinnamon raisin toast in a mouth and was thinking all the bloggy thoughts of change and how slowly it can come sometimes.  The words were rolling around my head of how it would come together when I started to put the first shoe on Emily. 

At that exact moment, Abby changed her mind about new shoes.  She freaked out.  She started screaming as I put the shoe on Emily.  I offered to put hers on first, which sent them both through the roof.  My quiet morning slammed head first into chaos.  I only had 10 minutes before the bus came, I still had to brush their hair and teeth and get those darn shoes on their feet.

They kicked and screamed and I fought and pulled and finally got the shoes on them.  They fit great, they looked great.  Why were my crazy girls crying?  I was so mad at them.  It frustrates me when I'm trying to do something good, when I want them to be happy---even over a little thing like new shoes and it turns to dust in a second.  They will probably head to school and be perfectly happy with their shoes; they will likely be fussed over and told how good they look and smile and grin for their teachers while I sit here feeling defeated. 

It bothers me when they start their days upset.  It bothers me when they upset my day.  In 10 short minutes of solid spine curling screaming (it amazes me that no one ever knocks on my door to ask if I'm killing them), I let myself turn from confident mom who bought her girls shoes they loved in the store yesterday into crazy-crying-mom who wants to throw the shoes out in the lawn and be done with it. 

Parenting is just not easy.  Parenting children who can't tell you what in the world is wrong is just frustrating. 

I will pray that Emily and Abby have a good day.  I will yet AGAIN pray about the way I respond to them.  I will also pray for a miracle, I pray that God will heal them, give them the words they so desperately want to say and I so want to hear.  We should never give up on God.  Just because I've prayed for language for 12 years, doesn't mean he'll never give it to them.  I will also try to remember that from both God and my girls, there are still answers, even when there are no words.  I just have to listen really, really hard---which I'm just sayin'---is really, really hard to hear over all that screaming, Lord.

Swimmy Time

We have lived in Florida more than nine years now, and we have been blessed to have a pool for all of that time.  When we bought our house I thought it would be a good way for Emily and Abby to get exercise,  being that gravity is not their friend.  It pulls at their bodies; it holds them in positions their damaged motor cortex's can't counter.  In the pool, with that yucky gravity not a factor, they are free.   

When the girls were little they went to a school that was specially designed for children with disabilities.  They had an indoor heated pool that was a part of their weekly physical therapy.  Parents were invited to join their children during that time.  Of course I was excited about what I was still thinking of as an amenity.  The first time I walked in to the pool area at school, Emily and Abby were about 18 months old.  The giant pool contained six little physically impaired babies wearing special life preservers around their necks that kept only their head above water.  They didn't tip in them like they would in typical flotation devices.  My mouth dropped open at the sight.

I don't mind saying I was horrified.  It looked like a pool full of floating body-less heads.  It was absolutely nothing like I would have pictured "swim therapy" to be.  I thought of slides and balls and cute little animal floaties they would sit in.  Definitely NOT a bunch of bodiless babies floating around like jellyfish.  Noticing the look of horror on my face, the therapist gently said "they're free, for the first time in their lives, they can move on their own.  It doesn't matter what it looks like, only that they can".  I took a breath and deliberately and slightly resentfully stepped further into the world of disabilities as I changed my babies in to their swim suits and strapped on their "head floats". 

When we came to Florida, Emily and Abby rather forcefully let me know that they didn't appreciate the particular brand of "freedom"  I was now offering them.  They hated our outdoor, unheated pool.  They didn't like being held and played with in the pool the way I thought would be fun, and I had a personal vendetta against the floating head. 

This year, as almost always happens in life, I decided to meet my girls on their terms.  I determined that they really needed exercise and I wanted them off of their bottoms for a while.  I made the executive decision to incorporate pool time in to our summer daily schedule.  I strapped on the floating head device and in we all jumped. 

They have done awesome.  Abby loves it, she kicks and moves splashes.  Today she tried to bite the girls floats, which was insanely funny.  Emily needed a little more convincing.  I printed an article for her on the benefits of sunlight and metabolizing vitamin D.  It worked for that funny girl. 

I realize that yet again, if I could get out of the way and take my ideas of life with me, my girls have more fun.  The things that make me feel safe, secure and free are not the things that make them feel that way.  Instead of trying to make them better or look like my other children, I set my foolish pride aside and have fun with my girls the way they can.  I watch their little heads bobbing in the water and the smile on their faces and feel grateful that I can still learn.  I am grateful for children who teach me such great life lessons by simply floating in a pool.

So much happens everyday in the life of raising children with disabilities, I really shouldn't wait so long to hit the computer keys.

Now it's time to catch up! 

Happy News first:

Jeff's been home a few times, and we are all doing great.  I am so far beyond surprised that I can handle this at all.  I thought this time apart from Jeff would be about surviving, like some sort of wilderness trek involving heavy loads, exhausted days, and conservation of provisions.  My friend reminded me early on that our God is not the God of just surviving, He is the God of thriving.  It is a heavy load,  and I am exhausted at the end of the day, but it's that good kind of tired that tells me I've accomplished something that day.  The girls are taken care of, the house is usually pretty clean, I am learning to ask for help when I need it.  All in all, I miss our family together, and I eagerly wait for the day when we are, but I appreciate what God is showing me about Him in this time.

We are hosting Vacation Bible School at our church this week.  I teach the special needs class.  I can't tell you how much I love these kids.  They are so smart and funny.  We laugh and have fun and learn about God.  I love this class because when I first started in church, I said repeatedly that I would never want to work with special needs children.  I felt like I had enough of that at my own home, I definitely didn't want to spend whatever free time I had with other special needs kids.  Silly Rabbit.  I'm not sure why we even think at all---God has his own plans, and my heart changed so fast in that area.  I love my kids.  Not the I heart chocolate kind of love, real love that stays even when they are gone.  These kids are a gift and I encourage any of you to give special needs ministry a try.  They need to know God loves them, no matter what as much as you and I do, maybe even more.  Spend a few minutes getting to know a special needs child, you will be blessed.

My precious daughter Sarah turned 10 Sunday.  Ten years.  She is my baby and I still see her walking off to kindergarten with her little back pack on.  It goes fast.  She's at sleep away girl scout camp right now.  I am not the kind of mama that deals well with her little pumpkin sleeping away from home with people I don't even know, so this has been a challenge for me.  I miss her  a lot, but I am excited for her.  I can't wait to hear all about it.

I'm sure there is much, much more but those are the highlights. 

Now the other news, I'm not going to call it bad news because the bible says that all things work together for the good of those who love Him and I do, so I'm sure there is a reason for everything. 

One week before the last day of school, Emily had two seizures at school.  Emily had one seizure last summer, none before and none since.  She was at school when she laughed and then had a 6 minute seizure, followed by Todds paralysis, which looked like a stroke with the right side of her body paralyzed.  I was afraid that she had had a stroke, but Todds paralysis occurs only with seizures and thankfully, always resolves quickly on its own (she was almost completely back to normal before we left the hospital).  She had a second seizure as the ambulance arrived.  Getting the phone call that something is wrong with your child is awful.  Even though I know most seizures look scarier than they are, even though I know she's going to be alright; I had to see her, touch her, feel her warm skin on mine, watch her open her eyes and know she is still there.  Then I can breathe again. 

We get her EEG results today and decide where to go from there.  I don't want seizures in my life.  I want to stomp my feet and cross my arms and say enough is enough.  We do not need another thing to think about, medicate, deal with.  I could stomp my feet and be a baby, but it's not going to change anything.  I just trust that we will handle this and Emily will be safe. 

I just realized I have one more good thing to add to the list, it's 8:39 am and Abby is still asleep!  Wooo hoooo!

So far, so good

It's been 2 weeks since Jeff left.  Overall, I have to just praise God.  The girls have been handling it well, all things considered.  I have done well.  Only in my head, when I think of it all, do I feel tired.

A few things I've learned so far:

• ~God is so very good.  As hard as this time is for me, I have felt his presence.  Even more, I have felt his guidance.  I am certain that He is moving me exactly where He wants me to be.
• ~Sometimes, it's just easier to do things myself.  We all love and appreciate our husbands, but honestly, knowing I can't expect him to do anything around here is almost easier than being irritated because he doesn't do it my way or in my time (there's probably a greater lesson there, but that's all I have to say about if for now :). 
• ~I'm stronger than I think I am.  I always secretly wonder if I could really do what I do if I didn't have the opportunity to be a stay at home mom, and if I didn't have a supportive husband.  I think the answer is definitely NO.  I couldn't.  But, I think I would still make choices I am proud of.  It's only been two weeks, but in my life, that's a very long time and I'm doing better than I thought I would.
• ~I'm tired.  This is really, really physically very hard. 
• ~I miss my husband.  I've spent the last 18 years with the same man; the last 12 we have raised disabled children together.  I have always had a little pocket of fear in my heart about my marriage.  I've wondered if we didn't need each other so much, would we still be together?  Would we work out all of those difficult times and frustrating moments when we wonder if we even like each other, much less want to be married?  It is a joy to know in my soul that I choose him.  It is a wonderful opportunity to discover that I don't need him in the way I thought I did, but that I want him.
• ~I have a long way to go.  Each day is filled to the brim with challenge and opportunity for all of us. 
• ~Emily's new service dog snores.
• ~Transformation is inevitable.  One day, if the good lords willing and the creek don't rise, I will look back at me here, a baby in this journey.  I wonder what I will see, where God will bring me. 

It is exhausting to be here, I think that at least for tonight, peach pie ice cream is the answer.  I'll try it and see how it works out.  Maybe it will make the next "things I've learned" list.