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.