Saturday, January 24, 2009


This past week has returned us to the beginning of the road on this journey that I don't want to be on anymore. We've been here before and I hate it. I thought we were done with this Infantile Spasms stuff.

I am having a really hard time with this. I feel like I did when we got our first diagnosis at 4 mos old. I feel like my "amended" dreams that I have for Daniel after his original diagnosis are getting edited too. God's up there yelling "STOP!!! Things are going too well for this kid, lets spice it up a little". I'm revisiting steps that I have already passed. I am scared, and I am grieving because yet again, we are made to change our dream.

I let my guard down. Maybe I boasted too much about how well Daniel was doing, even with the crappy mixture of "disabilities" he has. Maybe I gloated, bragged, or spoke that Daniel is such a strong fighter. And God heard me, and has decided that yes Daniel is a strong fighter, but lets see what breaks his mother. I don't understand. Punishment of some sort? Don't punish my child for something I did. If I could give Daniel a life where living wasn't always a fight, in exchange for eternal punishments against me....sign me up, I'll do it, within a blink of the eye.

John 9:1-3
As he went along, he saw a man blind from birth. His disciples ask him, "Who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

I am not sure that I can grasp this new set back. I'm not sure I can get back off the ground. I feel defeated. He has progressed so far since he regressed from the first onset of the IS. He even fought back a second time without a ton of regression. But come on...this is the 3rd time. And it is so unexpected. I can't understand it. WE HAD NO CLUE.

This is when my guilt comes into play. How could I not know? Where is my motherly instincts? We just went for a routine EEG to check up. I held him most of the 24 hours, I watched him. I saw NOTHING. How can that be? Infantile Spasms, are severe seizures, watch the videos you see on the internet. He didn't do anything like that. He did NOTHING that would classify as a "cluster" of seizures. Infantile Spasms come in clusters that is one of the main characteristics of them. Another is the Hyppsarrythmia. This is seen on the EEG and for Daniel there is no Hyppsarrythmia. How is that possible? I just feel like we keep getting kicked in the stomach with every turn. He has no hyps, and very, very subtle if any outward appearance of seizures. ( I am actually going to meet with the EEG department on Monday so I can watch the video and they can show me what he does. They say unless they were reading the EEG, they wouldn't have known it was a seizure.) We have no idea how long he has been having seizures (no more than 4 months, because that was the last 30 minute EEG). We have no idea WHEN he is having them, they aren't the typical jack knife type seizures. He doesn't cry or get cranky or sleepy (that we know of), and there has been no regression (yet). He has been progressing actually, besides this he is doing really well.

So, its not whether you get knocked down, its whether you get back up again. And I am having an awful time of it. I want to be there and be strong for Daniel, but I just don't understand WHY this is happening again.

I get up in the morning and put on the smile, pretend I am strong and hum "I Will Survive" but on the inside I am screaming in terror, afraid to fall asleep, scared I'm going to wake up to my son, and I will have lost him yet again to something that is basically out of my control. How do I protect him?

When you get to the end of your rope, its whether you make a noose or you tie a knot and hang on. I'm trying to hang on for Daniel...but I don't want to do this crap anymore, I can't keep fighting a monster that is currently kickin' my ass.

Roll with the punches - I think not.


MeghatronsMom said...

{{{{{hugs}}}} I have nothing more to say except I am here for you. Sounds like you need to vent, cry, scream, pound your fists, stomp your feet- do what you need to do to get through this. I am listening & I am here.

Mamá Terapeuta said...

Its hard but you'll both get thru this.

Have you writen to ABR? They have a hole different approach to seizures that is much effective and less invasive than meds. Epi meds sucks... Besides, it sounds like Daniels seizures are kinda 'light', I'm sure they will be easy to control. Maybe a second opinion?

Anonymous said...

I just wrote a post about our epi treatments in case you wonder.

JoAnn said...

I've been following Daniel's blog for a long time. I'm praying for both of you!

I know how you're feeling all too well, unfortunately. I don't understand why my little Emma has to have a new diagnosis every time I turn around; I don't understand why I have to be in a wheelchair right now.

MeghatronsMom is right: yell, vent, scream at God if you need to.

He will understand. I've certainly yelled at Him before, and yet His love never falters.

sending you e-hugs.... ((((hugs))))

baby trevor's mommy said...

The second time around is definately harder on the heart. It's all shock & awe the first go...which is like a natural anesthetic.

I'm so does suck. And I have no clue what the Plan is for our little guys. But I do believe there is one...and that gives me some sense of peace.'s healthy that you're feeling things so deeply. Least that's what my shrink tells me...*smile*


Bird said...

Omigosh--super long comment coming.

First, nothing that you did caused Daniel to have a recurrence of epilepsy. NOTHING. It's sometimes easy to think that way, but God is not vengeful. More importantly, you and Daniel are two entirely different people. This is Daniel's journey and as difficult as it is as a mother to accept this, we can't control that journey. Don't you wish you could?

I'd be very interested to hear what the EEG peeps show you as a seizure. I had a tech once tell me that Charlie's startle response was a seizure. Hello? Seizures aren't caused when someone tickles your feet.

I have read a ton, TON on IS and hysparrhythmia is, by far, the worst of the symptoms. I read whole papers where they said that you can get rid of the seizures, but it you still have the hyps then it's bad. I'm guessing his EEG is just chaotic? Hopefully, they can get that under control, but an absence of hyps is reason to be hopeful. You've said yourself that he IS progressing--hold onto that during this difficult, difficult time.

Also, I would really drill them on how certain they are that this is a recurrence of IS. YOU know what Daniel's IS looks like and I'm as surprised as you are that you didn't see anything. Perhaps, he's got a new, different type of epilepsy that simply resembles IS to someone who has never seen Daniel's particular type.

Melanie, I'm going to be praying for you guys. I have cried myself to sleep over this same stuff and know how difficult it can be. I, of course, don't know exactly what you're going through, but I'm here if you need anything.

Justinich Family said...

This is so hard to deal with, especially with him having the clean EEG's. But I have to wonder along with Bird if maybe it is a different type of seizure and not the IS. I think meeting with the EEG department is a great idea so you can see exactly what these seizures look like. It is so hard not to feel guilty, but you are doing awesome with Daniel. And like you said he is progressing really well. He is strong, I think all of our SN kids are strong that is the gift God gave them to be able to fight these monsters they have. It is us Moms who do not always feel strong enough to watch or fight along side our kids. But you have tons of friends that are here for you to help you through this.

Prayers for Daniel and the family

Jacolyn said...

Oh Mel, I'm so sorry! I have gone through the same guilt feelings as you and studied the same scripture and I am no closer to understanding but I do know that you, and Daniel, are so strong and that God does have a plan. I am praying for you sista!

Ellen said...

Oh, Melanie. I am behind in my blog reading, and just getting to this now. I am crying. I can imagine how upset, disturbed, angry you feel. Like Katy, always so full of wisdom, just said, PLEASE, please, please, do not beat yourself up about this. You are a mother. A mother with great instincts, but not a doctor. How could you have known?

I agree about talking with the EEG folks. I also wonder if you can get a second opinion from any local expert on epilepsy?

Shannon said...

I am so sad to be reading this. Your writing is beautiful and truly allows us readers to really feel how you feel. You are a great mother. You could not have known what was happening.

I hope they can figure something out. I know NOTHING about seizures but I do know that it is something I would not want to deal with.