If I Could Make You Understand

… then maybe it would make sense to me.

 

If I could make you understand

that I know how frightening it is for you to get an EEG. Strange people handle your head and mark up your scalp. The smell of the glue, the sound of the unseen vacuum tube as each lead is dried, and the discomfort of some 30 electrodes is enough to scare anyone.

 

If I could make you understand

the reason I’m not with you when they glue on the electrodes is because I don’t want to see you so afraid. I send Daddy to go with you because I don’t want to watch you fight it with everything in you. I don’t want to be there when they have to bind your arms and legs in order to get the leads on your head.

 

If I could make you understand

that it looks like there are many, many more EEGs in your future, my darling.

That the latest results show that the seizure activity in your brain has indeed returned. Less than a year ago, we were able to quiet the electrical storm. And I thought, I hoped, that was the end of it. But now it has come back with a vengeance, and I realize the fight is far from over.

 

If I could make you understand

that I never wanted you to have to go on so many different medications. I said at the outset: “My daughter will not go from drug to drug.” I’m sorry that, in fact, you have been on 4 different anti-epileptic drugs in the past couple years. And while these may have prevented some of the outward, visible seizures, they have done nothing to calm the non-stop “spike events” in your brain.

 

If I could make you understand

that your father and I have to make some very difficult decisions next week about how to treat your LKS. That we pray for the Lord’s wisdom and guidance everyday. That we trust He has “plans to prosper you and not to harm you, plans to give you hope and a future (Jer. 29:11).”

 

If I could make you understand

that we need to know that we did everything we could to help you.

 

If I could make you understand

that I am so very proud of you. In spite of all this, you are still our gentle little girl with the soft smile. And you have managed to learn so much in the past few months, in spite of the constant short-circuiting in your head. You amaze me.

 

If I could make you understand

 

But I just can’t…

 

find the words.

 

So I’ll just say I love you…

 

and trust you understand.

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21 thoughts on “If I Could Make You Understand

  1. As usual, beautifully written – such that we can all feel how you feel. Thank you. Reading your feelings is a privilege.

    I believe Rhema understands – or perhaps more deeply than cognitively – she feels your love.

    If her fighting the electrodes looks like fear or pain, I believe that does not negate her secure feeling of love. And she will not lose that security even with many more EEGS. That’s what I believe, and think.

  2. wow, what a gift you have for words, and what a weight you’re carrying. (((HUGS))) You and your family will be in my thoughts and prayers.

  3. Poor baby. You know, someone really ought to invent unscented EEG glue for our kids. I’m convinced that the stink of the glue is what sends my sensory-defensive Taz over the edge every time.

    Good luck with the next phase of treatment for the LKS. Fingers crossed here.

  4. My mother’s heart is heavy for you right now. I know the path you are walking right now is unknown and you may be feeling like you are clearing it as you go.

    God knows where it leads. He is surrounding you all with His love. I am praying that as you seek Him you will walk with confidence in each lighted step that you take. I am also praying that God would give you His peace that passes understanding. I know if my husband were about to deploy and my child was in the midst of all that Rhema is that I would need God’s peace even more. Know that you are not alone. Many of us are praying for you; agreeing with you, and love you.

    “The Lord himself watches over you! The Lord stands beside you as your protective shade. The sun will not hurt you by day, nor the moon at night. The Lord keeps you from all evil and preserves your life. The Lord keeps watch over you as you come and go, both now and forever.” – Psalms 121: 5-8

    “Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The LORD will fight for you; you need only to be still.” – Exodus 14:13-14

    I had actually thought to send other verses; but the Lord kept leading me back to these.

    Blessings my friend!

  5. I have read this post four times without knowing what to say….she knows, she must know, how can she not know with all of the love that you give her, and yet those questions seep in to your brain. If I could send you a hug in the mail I would, there is no pain deeper than that of a parent for their child.

  6. I have often felt that way about my son. Every once in awhile I hear him say under his breath (as I leave a room), “Lub ooo.” And I know that he knows. I’m sure that Rhema knows of your love, too.

  7. I could use a whole toilet roll to write a list of all the things that I was ‘never going to do to my children’ so by comparison you’re doing pretty darned well. Fortunately we don’t have anything as heart wrenching to deal with as a ‘real’ medical condition, but when it comes to hospitals and the like, that falls to me, the steely faced one as their Dad is a great big ole softy. We all have our different parenting roles and it looks as if the two of you are handling it just great.
    Best wishes

  8. I’m so sorry about all you go through. You are an amazing woman. laundau kleffner is definately a tough diagnosis. It may in fact be the reason you are seeing autistic like behavior. I hope you are blessed with a miracle soon. Be strong, for if God is with us nobody (nothing) can be against us. You are doing a great job. So what if she’s been on several meds, what else can you do but try and help her? U are doing a great job. Have U considered cod liver oil? sounds simple, not a cure, just a helpful adjunct to treatments. Increase fats in her diet. You can do a modified ketogenic diet. Your case sounds a lot like Jenny mcCarthys’. I heard her son has Laundau Kleffner too.

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