Saturday, June 21, 2008

more frustration

Today, watching Hewitt I had a sickening revelation. We give him these meds to stop the seizures. The seizures that might delay his development. The seizures that might cause him to fall multiple times a day. The seizures that keep him from interacting. We started Hewitt on his first med after his 3rd tonic-clonic seizure. He didn't start having all of these other types until after. Now, as Doose syndrome onsets it can take time to see all of the different seizure types. But, there are definitely some meds that aggravate seizures for some kids. Watching him for the last 2 weeks, functioning at half of his usual self I can't help but wonder what would happen if we take him off of it. Before this happened I was hesitant to give my children much of any med unless totally necessary. Titus was my first to ever have an antibiotic. To this day, the other boys have never been on one. And, we get thrown into epilepsy and I suddenly am okay with just pumping my kid up with all these medications in the hope that they're going to stop the scariness of the unknown. Meanwhile I have suddenly lost my concern for the unknown of all of the drugs my kid is on. I can't tell if he's all doped up because he's having so many seizures or because he's on so many meds. I don't know if his seizures are actually from the epilepsy or if they're aggravated by the meds. I feel as though I don't know much of anything about WHY this has happened and I have been okay with that. I feel so angry that the Dr.'s won't look beyond the obvious for a why this is happening. We do that for every other thing that happens. But, unless it's something obvious with epilepsy we just say the cause is unknown. I know it's not as simple as that. The brain is very complicated and there is a lot unknown about it. But, we do know a lot about the rest of our bodies. And why wouldn't they look for something else that might be triggering his brian to do this? All day today I just couldn't help but think how ridiculous it is that he is so out of it and still having seizures and it hardly seems worth it to use meds if he's just going to be out of it all the time anyway.

I HATE THAT THERE IS NO RHYME OR REASON TO THIS ALL. I HATE IT. I HATE IT. I HATE IT. There is no limit to the amount of times I can say that to make me feel better about it. I still can't believe this is our life sometimes. That I look at him. He's so stinkin cute. And, he stares off and he drools and he drops and he throws his arms and I just sit here wondering where my kid went and for the first time I am asking why God has let this happen to us. And, even though I know there is an answer to that question - it doesn't always make it hurt less. I know He wants to carry this burden for me, but I have to be willing to give it to Him first. And, every time I think I've given it over I find some way to take it back. I find it in my tears, in my anger, in my frustration, in the meds that don't work, in the bruises on his face, in the stupid ridiculous blue foam helmet I have to put on his little head. I keep thinking I've handed it over and every time it starts to hurt I take it back. I feel like Paul in Romans 7 - ...for I have the desire to do what is good, but I cannot carry it out. For what I do is not the good I want to do; no, the evil I do not want to do- this I keep on doing.....What a wretched man I am! Who will rescue me from this body of death? Thanks be to God - Through Jesus Christ our Lord." vs 18,19,24


Anonymous said...

Colleen I think some meds do aggrevate the seizures, but it is so hard to tell! It is the everchanging beast or the meds?!?

I will share a quick story with you...I woke to my husband screaming for me to come quickly around 3:00 am one morning. It was shortly after Luke had started Keto. My precious girl was having a seizure! Then about 20 minutes later, I witnessed her having another one! I lay beside her crying and asking God WHY? I had never felt so defeated in my life! Called neruo the next day, EEG confirmed what I had seen...BUT, I refused to put her on medication! I am like you, I don't believe in taking med unless absolutely necessary. About a year and half later her seizures where increasing to a couple per week and getting longer in duration (she has BRE, nothing like MAE, and has partials, she has had 2 TC's) I finally broke down and her to take trileptal...She doubled her weight in less than a year! Plus, she is still having a handful of seizures per month! She is beinning puberty now, so I hope the seizures will begin to fade. She has been medicated for 2 1/2 years now...I can't wait to get her off the nasty stuff! I feel your pain about the meds, I have tried both ways.

Your frustrations are normal. Believe it or not, I still go through frustration now! Yes, I am thankful my sweetheart is seizure free, it is such a blessing! But I have to stop and remind myself that God lead us through this path for His own reasons and not question it or try to figure out why.

Keep reaching out to God, He is the only one to guide you through this.
Laura H.

Anonymous said...

I commend you on your willingness to share your heartbreak and struggles thru your blog. In the same way, I have always really appreciated your willingness to provide those who ask (meaning me) with updates on Hewitt's progression every Sunday.

I know I don't know you very well, but I really admire your strength and vulnerability. I would be honored to be someone you felt like you could call or ask for help if you ever needed it. I will continue to pray for all of your family. Kristine D.

Anonymous said...

Colleen, I know that I can't truly understand how this all feels to you, but my heart aches to be able to do something to help. It sucks being so far away!!! I know things always seem easier when you at least know the reason why things are happening and unfortunately we don't always get to learn that. I feel that God chose Hewitt, chose you, chose Hayden for a reason that may not be clear now. I know whenever I talk with you and when I read your blog I am amazed with your strength, amazed with your quest to find answers, and love that you don't just accept what the doctors say just because they are doctors. Who knows, you might be the person who is persistant enough and keeps asking questions that they can't answer, that it will drive them to really research and be able to do something more than give Hewitt a bandaid.
I believe that all of your beautiful boys are absolutely blessed to have you as their mother!! You are an inspiration to us all, and I am so proud to be able to say that your my sister!! I Love you with all my heart!!! Give all of the boys squeezes and tell them all to give you one from me.
Remember that you don't have to be strong all the time, even if you can't give it all to God he can still help you carry it.
Love, Amy

Sarahendipity said...

I loved what Amy said..her words echo my thoughts everytime I read your blog. I know that I appreciate all that you write on here. You are such an encouragement!

The Fears said...

wow again I read with tear filled eyes I will be praying for you to have the peace only GOD can give that goes beyond all understanding. I am sorry that your family has to go through this but thankfull that your know GOD never will leave your side!!!