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.