Hello friends,well yesterday was another crummy seizure day.Ariel's VNS has been giving her severe insomnia and so she's been getting very little sleep,which leaves her tired and cranky all day,not to mention lowering her seizure threshhold,then I was in my room clipping coupons when I heard that all too familiar horrible moan.
We ran into the room and there's Daniel blue and convulsing on the bed with blood dripping out of his mouth.Even when he stopped convulsing he was jerky and shaking.His heart was practically beating out of his chest.His pulse was 142.Once he was a bit more with it we assesed the situation and could tell he was once again dislocated.
So off to the E.R. I went with him hoping to see a familiar face,but it was not to be, all newbies.The problem with that is that they often don't listen.Thankfully this doctor did listen.Daniel was very post ictal for over an hour after.They did x-rays of course he was dislocated again,but the doctor listened and gave him a good sized dose of Dilauden and then he was able to pop ot back in himself.
This life can be so draining at times.Watching seizures destroy your kids brains and bodies.It hurts me so much when I hear people talking about their kids education and things they are doing to move on with life.It hurts that my kids can no longer do basic things,that they used to be able to do.It scares me to think of what their futures are going to be like.This past year seizures have been such a big part of life.It seems like not hardly a day goes by that we are not dealing with them.Here are some of the pictures of the past year.
I am not always Miss Suzy Sunshine.It drains and hurts me terribly to see what this syndrome has done to my kids,but I also know I need to be strong for their sakes.If I fall apart so will they.I know The Bible says God will not give me more than I can handle,I must admit often times I think "God you must think I'm a lot stronger than I think I am."
I choose to stand on God's Word to stay strong and believe that there is a purpose in all of this,even though there are times that I don't see it,but I remind myself I am only seeing a little piece of the big jugsaw puzzle that we call life.God sees the whole big beautiful picture.
What's the alternative? Wallowing in self pity? I must admit there are times I do want to do that.There are times I want to lay in bed all day long eating chocolate with the covers pulled over my head, and not facing another day of watching my kids suffer from this horrible syndrome.I cry, I scream, I get mad and times I do think how unfair it all is,but then again I come back to standing on God's Word and promises.
Thank you all for taking the time to write a kind word or being kind to the kids and especially for your prayers.Looking forward to better days.