Life on the out side

Mar 3, 2015
4 min read

It was over two weeks ago Matt had a bad seizure fell off his bed and banged his forehead, he hasnt been back to his happy go lucky Matt self since, he is mostly out of it not really sure or just in the moment of what seems like confusion.

During the week day I have been home not really wanting to take him out by bus even on a short ride maybe to much, the first weekend we went on a nice walk to the trail I spoke of the last blog this weekend we went to a new one it was a lot longer and I wasnt sure how he was going to handle it, at first it was okay he kept up with us and when we went off trails he would just stay waiting for us to get back on the main trail. There was a beautiful wood path along the lake he just loved looking out on the water and at the moon that you could see so clearly slowing down and getting far behind I dont even think he noticed the young girls behind him when I looked back I saw him stop again and the girls were not even sure what to make of him it seemed as though afraid to pass him or I dont know. I could feel myself becoming saddened for a moment then reminded myself it could have just been innocent or even if it wasnt he didnt notice them so I wont either, I went back and put my arm around his back helping him continue on the path, “look mom the moon” Matt said to me, “Ah yes isnt it beautiful” I said as I walked with him arm around him to help him hurry a bit and to let him know he was cared for, he was loved.

Affection isnt always easy for Matt I am not sure, it wasnt always like that and there are many days we get to experience the hugs and kisses, this day I am glad he is allowing me to hug and put my arm around his back.

As we walk through the trail I am grateful for many things the sun, the warmth, the trees, the lake, the birds, my family running playing and having fun and for catching the moments Matt is enjoying these things as well.

Last night another seizure and although I am pretty good with not always taking them to personally I still find myself wondering what else I can do or what I can change or well anything....

In the bath and doesnt remember how to wash his hair, dress himself, worried about something, and I become a full time nurse care giver helping his get ready and dressed for the day while cleaning up his room and making his bed for him.

I find myself at this time wondering what else I can do, doubt, fear, confusion, maybe even a little panic. I call my husband who some how always seems to know what to say and reminds me there is always something we can try.

Matt doesnt have very many seizures these days and I am so very grateful, Matt has maybe two to four seizures a month and yes sometimes this can fluctuate from time to time. I forget to look back and see how far we have come, I forget that this two to four used to be daily, I forget that he used to be on very high doses of pharmaceutical medication sometimes three different types, I forget that he spent many days in bed not able to do anything himself and at one point a month in bed not even being awake enough to eat on his own.

Yes we have come a long way and the best thing to remember is it always changes...

Life on the out side I only know what I see, I know Matt doesnt remember the seizures any more the grand Mals are all he has now but I have no idea what happens to Matt and I can only guess how this effects him every time he has another seizure, I can only see what he becomes, I only get to see from the out side.

It wont always be like this, he will be back to the happy go lucky guy he has been before, it wont always be like this he will remember how to do things himself, it wont always be like this he will be able to hug and give affection again and to have a full conversation.

I know that sometimes we have our difficult times and there will be days I need to someone to just talk to like today when I called my husband just for the support and some ideas on what we can try next, I know the most difficult time is when you feel all alone even when your not, when you feel like you have no one who would understand or want to hear, when you talk yourself out of that phone call or email or message, I know there are times when you feel you have done everything and you dont know what else to do, I know there are times when you will feel like giving up, these are the times when it is good to just sit quietly with yourself and reconnect, you are not alone you never have been, for me it is a good time to sit in the sun if its a sunny day like today was and soak up some sun listen to some music or just enjoy the moment even if it is just one moment it is worth it, you are worth it.

I am here for you, I may not know your story or what is going on but I am here for you. You dont have to go this alone.