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.