My sleeping beauty, falling back asleep on me last night.
Technically, it is Thanksgiving day.
I have to admit that I have been pretty shaken up by this whole “lots of seizures” thing. Especially when I was looking through my three cellphone photos of the EEG and found one that was completely filled with seizure activity for that period not just a quick blip.
Last night, Hannah woke up around 2 am and stayed awake until about 4 am. Now, I know it wasn’t her movement disorder that woke her up, it was the constant twitching from the seizures. The worst part was when I finally got her back into sleep mode and she was laying in my arms, she was dozing off and she started the muscle twitches again.
I wanted to cry. My baby girl was having seizures right then and there…in my arms. There was nothing I could do to stop it. Then I felt so incredibly bad for her. I can’t imagine what it must feel like? Does she feel them? I hope she isn’t in any pain or anything.
Then I started feeling guilty for doing this to her. I mean, seriously guilty. Probably moreso than I ever have before.
I walked downstairs after I woke up this morning and saw Hannah playing with her nurse. I felt that overwhelming guilt again and just had to cradle her up and smother her with kisses. She grinned hugely, and she melted my heart like she has done so many times.
December 3rd can’t get here soon enough when we see her neuro regarding the results. I only pray that we can get these seizures under control somehow. Perhaps we have been medically concentrating on her movement disorder so much that we have been focusing too much in the wrong place? But then again both Klonopin and Keppra help control seizures. However, Haldol decreases the seizure threshold. Have we been playing seizure tug-of-war with her meds?
I know, feeling guilty isn’t healthy. But the last thing I want is for Hannah to suffer in any way whatsoever. Delays are fine, she has already compensated with her eye movements, and she has gotten used to her Gtube and Trach. But with those she is not physically suffering.
Seizures are another story. Put things into a whole new perspective now. I have actually found myself scared that I am going to lose her sooner than later. I haven’t felt this way since this summer when she was hospitalized. But now I can’t seem to shake this fear.
Oh Carrie!
I know all about Mommy Guilt. Repeat after me…. I did not “do” this to my child. Repeat it a lot. Anytime that voice tells you that you did, it’s a liar. You took great care of yourself during your pregnancy. You didn’t impact this. It just … is. Looking thru all the pictures of Hannah that you post, it doesn’t appear that she is suffering in any of them. You are a loving and amazing mom. Repeat that to yourself about 100 times.
Spend some time cuddling Hannah and Ethan and Abby today and remind yourself of the blessings you have. You are one of mine. Love you.
I am suffering the same guilt as you right now Carrie. I had no idea the night and day twitching was really seizures. I am sure Noah does not feel pain, but wish I had a doctor take me seriously sooner to help relieve the sleep deprivation he has been having due to the constant seizure activity. Just hug her and love her. Mel is right, she is always smiling and happy. Just a gorgeous little girl who has brought a lot of joy to the world. Noah was just started on another seizure med on top of the keppra because he is still not controlled. It can take awhile to tweak the meds.
….from a different perspective…Hi Carrie, I continue to follow you and Hannah on FB and this blog although I haven’t written in awhile. I have had a seizure disorder since 1993. Both grand mal and petit mal seizures, biting my tongue, spacing out, growling, shaking, scaring the hell out of my whole family seizures..you get the picture. One thing I am certain of: they hurt the observer much more than they hurt the one having the seizure. In fact, I always felt euphoric after a seizure. A big whopper seizure would leave me feeling tired, maybe sore, but I didn’t remember any of it and would “wake up” feeling calm and happy. Not to minimize the situation, but from my adult perspective, seizures don’t’ hurt.
Carrie- you know you have so many of us that feel that same guilt, that same feeling when your child is seizing in your arms and you feel helpless. We have ALL been there. This is NOT your fault, you did not cause this, and with everything else she will get thru this and they will be controlled. BELIEVE THAT. Charli is proof. If you have ANY questions PLEASE call me, or write. I am praying that they find the right med for her..and there are so many new meds coming out now there is always hope. Don’t let this setback hold you back. You fight, I know how hard it is after all you’ve been thru, but you can do it… you out of everyone I know can do it. This is manageable. It HAS TO BE. repeat that all day. It will be ok. I can honestly tell you that it sounds like they aren’t causing her pain. Especially if she is resting during them. My thoughts and prayers are with you, and I’m praying so hard for Hannah. I love you guys.
I think cuddling helps. 🙂 Give her extra from Bertrand and me.
Carrie, I do know your feelings…guilt, fear, and helpless… No matter how hard we try, the horrible thoughts find their way into our minds. Peace is hard to find. I can say watching Samuel seize was always hard on me. Not being able to stop the uncontrollable is hard on a mom. But, like Melissa said, seizures are usually much harder on the observer than the one seizing. As an adult with epilepsy, I can say that my seizures have never hurt me like Samuel’s seizures have hurt me! Always in my prayers.