I am not even sure how to start this entry. It's been a long time since I have updated on Henley, but we had a very small little event that brought several things right back to the surface today for me, as if to remind me that we are not quite "home free" just yet.
Tonight just after 6:00pm I was on the phone with my friend Chesley when I heard running and giggling upstairs followed by the loudest thud of a child hitting a wall....I knew someone was hurt. Seconds later I heard screaming. It was Henley. I know my children's cries and some I don't run for, some I ignore all together, but this cry I sprinted up the stairs skipping steps as a time. When I got to the top of the stairs I saw Henley holding her head and trying to grasp for air as if she had had the air knocked out of her. It was one of those cries that you are begging your child to breathe in between hysterical outbursts. I reached out to grab her and she fell completely over to her side and started thrashing as if she was trying to catch her breath. I immediately got in her face to look in her eyes and blow air in her face to try to get her to inhale. As I was doing this I saw her eyes roll back to the left side and start shaking. I said "Chesley she is having a seizure!" and immediately lost control of my emotions. Henley quickly came back to and just started crying and wanting to be held. Zane started crying because I was crying and Haven stood to the side not knowing what to do. We all just sat there at the top of the stairs a complete mess. In the midst of trying to hold myself together, I told Chesley that Henley was fine and that I needed to call her back and hung up. Poor Chesley didn't realize how traumatic it would be to be my friend/neighbor. I hate that she had to witness all of that on the phone, but I know that God provided her in that moment for me. As soon as I hung up with Chesley she immediately called my friend Joanna who "just so happened" to be on her way to my house at the exact same time. Not one minute later I heard Joanna walk in my front door and say "Leslie, are you okay? Chesley just called me". (Thank you Father for constantly being steps ahead of my every single need)
Joanna was coming over with her kids for dinner since both of our husbands are out of town and we were planning to have dinner and chat. Well, this dinner ended up being one big sob-fest in which I think I have decided I might need some professional counseling or something. I told Joanna tonight that 99.9% of the time I feel completely fine and at peace with everything....but there is that fraction of time in which I burst into tears and wonder how in the world I can handle another event like tonight. I suppose I am and will always be a work in progress. All that said, I am not sure any mother could watch their baby have a seizure and not burst into hysterical tears and feel a sense of helplessness in the moment.
I should mention that Henley is in fact totally fine and acted as if nothing happened the rest of the night. She was able to tell me later in the evening that she hit the back of her head which may have been the cause of the seizure, but no one can be sure of that.
Adam is currently in China and will be home just in time for our appointment with Henley's geneticist on Friday of next week, and although we have had several EEG's for Henley I am contemplating contacting her neurologist to talk to them about the seizures again. I suppose I will try to fit that in sometime before or shortly after Adam's heart surgery...good grief!
After I was able to put the kids to bed and have a minute to myself I went in our bedroom and sat on the floor and just started crying all over again. In the midst of my tears I heard the music loud and clear in the other room playing over the speakers. These were the words I heard and I knew in that very moment that God was speaking directly to me with this song.
"Be Still"
He is here for the broken and life to the one who is undone
He is peace to the wounded and hope for the helpless one
He is here, He is here
Be still my soul, be still
Be still my soul, be still
Wait patiently upon the Lord
Be still my soul, be still
When the waves rise against me and the wind tries to draw me away
I will stand on the mountain, safe in Your arms I will sing I will sing
Be still my soul, be still
Be still my soul, be still
Wait patiently upon the Lord
Be still my soul, be still
Be still I know He is God
He is here, He is here
Be still I know He is God
He is here, He is here
So be still my soul, be still
Be still my soul, be still
Wait patiently upon the Lord
Be still my soul, be still
Wait patiently upon the Lord
Be still my soul, be still
Thank you Father for showing me that you are here with me through this.