Friday, January 2, 2009

Aw Luane knows me well....

Mmmmm Laune knows me well it seems.....even though I have posted lately.... honestly the past few days (especially today) have been.... well shitastic! I had backed off posting "everything" on the blog in hopes that Jude would overcome the seizures that wreak his tiny body with help from the new medication. I was wrong. Today, he had FIVE seizures and that's not counting the one at 2am, and the one at 4:40am. I am sitting here thinking that I am so tired that I barely make sense with my texts to Kelly, but then I remember what Jude's tiny body must feel like. Tonight Jude laid in my arms while we watched a movie, and he had that interested expression he has while looking at me. He furrows his tiny brows, and looks at me very intently. As a newborn he would just lay in my arms on the couch staring at me sucking on his paci, but when I would speak directly to him the paci would stop wiggling while he stared. He did the same thing tonight, and he looked so adorable. I kept telling Mike over and over like a bad lyric in a song "Look look at his little stare...now watch the paci will stop". Then I would look directly at Jude and talk to him just so I could get his paci to stop, and to see his tiny face respond to me. Then suddenly I noticed his back was starting to arch and I would say, "No baby no seizures..........it's mommy time....no seizures we can make it all better". Then the swinging pendulum dropped and he had the worst one I have seen! There is really no way to describe it to you without posting a video which I won't do. He is beginning to "jack knife" with them which is awful. He also now has pitiful cries between the horrible wrenching squeezing tightness that affects his muscles. I held him the entire time with Jude crying, me crying, and Mike crying. Luckily Em was at her dads, and as much as I miss here I am glad she was spared this heartache. I cried during his seizure, and said "I just don't understand". Why did God allow him to be born if he was going to be afflicted with such horrible pain?? I guess people can argue that Jesus was born to be afflicted with pain, but at this time that doesn't help me much. I am just being truthful folks. I know their are angels, and that I should have faith......I know this. One day I will find comfort in this I promise. I turn to all the other women in my support forums for support, and they defintaley give it. They are so wonderful, but I also realize from their many posts that there are a select few in Jude's category. Yet I also hear their loud voices that miracles happens, and they hold their miracles everyday........well many of them do anyway. Yet I while searching for answers through doctors, and for support I find the repetitive answer that Jude's stroke left him..........massively damaged. That we are holding a child they treat with medication at home. I wish I could take all Jude's pain, and put it in my body to bear, or in my fist to beat out. I cannot though. I look back at my pregnancy with everyone saying all the issues were the Devils way of trying to keep him Jude being born. Was that it???
I will be ok folks I always am, but I like to write out my true feelings here, because I know there are other families going through the same thing. I know there are pregnant mothers who read my blog too. You should know that the stroke that happened to Jude is rare so please do not fret. I was young at 35 too, and could have had another child, but we chose the path to give Jude a chance. I still believe that he has a purpose here! I truly do!!! I was told that Jude had a purpose, and I believe that!
God forbid if something happens to Jude, but I have no doubt my mother is standing by with a fuzzy blue blanket in hand to wrap him tightly. She will help take all that horrible pain away. She will hold him ever so tight!!! Probably humming to same songs I hum to him.
I try to write positive things on this blog I promise! I thought today about how I truly want to take my family camping, to the zoo, or to something normal. I wanted to come back and blog with great pictures, but it seems life has a way of reminding us that we have a new normal ;). A new normal eh Jocalyn? It's just something we learn to live with, live for, and live by.

Forgive my tears guys. Have a wonderful weekend.

Ps ~ My aunt will be here in 1 week which will be so nice. We also have a counseling session scheduled for that week which will help with our feelings.

2 comments:

Dawn D. said...

Writing is transference. It is healthy to get off of your chest all of your feelings so you can better try to deal with them. You write what you want. No one is forced to come here and read this blog. Know that you have thoughts and prayers coming from people all over. People you will never meet that are affected by what you are going through. From everything you write I gather that you are a loving dedicated Wife and Mother. When Jude stops sucking his paci and just looks into your eyes like you say, that's him telling you that you are the BEST.

Carrie said...

You are a strong mother...I know its the hardest thing in the world to watch your own child suffer and be in pain. You and your hubby sound like you are doing a wonderful job with Jude. He is such a cutie and so is your daughter Emily. I have an Emily too! I love that name! I hope 2009 brings you much happiness.