Sunday, January 18, 2009


Well Jude woke up again around 6:30am having a seizure, but again it didn't last very long. Do we see a ray of hope? My aunt flew out this morning, and I was very sad to see her go. Without my mom around I tend to cling to my family pretty tightly, and will miss their extra company. Before my aunt left she called to say goodbye, and to express that she really thinks Jude's medication is beginning to help. I would like to say that HE is improving, but realistically we understand that it is his situation that is improving. Either way we are grateful for any type of extermination in the monster that inhabits my baby at times. So we had to go get groceries today so we packed up everything we needed to venture out. Jude did so well until we were coming home, and we heard Emily say "Jude is having a seizure". She pulled the cover of his car seat back, and began rubbing his forehead. I am amazed at her ability to keep calm, and how protective she is of him. His seizures no longer worry or bother her they are an issue that we must understand and help control. His audible portion of the seizure was again minimal and lasted less than 5 minutes. He then twitched for another 10 minutes, but that is nothing compared to the 30 + minutes he was experiencing before. I told Mike that if the doctor increases his topamax in the morning to match his dose at night I believe his seizures might truly be controlled until he gets a bit older. Jude is displaying more signs to me of being a little more disabled, but he sure is cute!!! We also know that whatever lies ahead of us we will accept and try to tackle full force. A lady walked up to us at breakfast because she said her daughter wanted to see Jude. I smiled and said "of course", then looked and saw her daughters sweet downs syndrome face being a bit shy. I smiled at her mother, and then looked at Mike and noticed how sweet his smile was to them. I think prior to having a child with special needs we looked on others that had "needs" with sympathy. I now know that this is the wrong thing to do because our children are so loved, and mean so much to us. Plus I think at times that our children, special needs, or not have a better understanding and positive view point of life than us "normal" adults. In fact when we got home last night my aunt was telling me something my wise daughter said again. My aunt said she was talking to Emily about her paper regarding "If I were president". If you remember Emily's goal was to integrate special needs children into the regular school classes. I tried to explain to Em that the reason some children were in special classes was for their own safety. She would have NO PART OF THAT THOUGH! Anyway, Emily said "Look at that clock. I see the time..........but a special needs child sees so much more. I believe that Jude sees the lines, the colors, and more than just the time...he sees what makes up the time". Wow! Em told that to me without knowing I had already heard her description of what Jude sees from my aunt, but I still listened intently and thought she was so cute.
So Jude is now sleeping quietly in his swing, and we are grateful for a slightly peaceful day. Mike and I did have a very nice time out last night. It was nice to get away knowing that the kids were well taken care of. We were home by 10:30, but we were getting tired by then anyway. Oh and a huge thank you to Kim who did my hair ........ and then gave my daughter back what I sent her direction ;) ... you know what I mean. It was very nice, and very unexpected. People amaze me with their sweet gestures.
All in all I have had a nice weekend of finding true appreciation in both my children. I have some great photo's to post tomorrow so please check back.


S/K/O said...

I just read a few of your entries... I found you through Ellen. You are doing a great job and I appreciate the honesty, humor and joy that you convey in your blog. Jude is an absolute sweetie. Visit us at the OKM blog anytime and always feel free to email me with questions. I won't always have the answer, but I be there, nonetheless.


Julie said...

Your daughter is so wise! I love hearing about how she is with Jude. It is heartwarming. I am glad Jude's seizures are getting better. I am still praying for him and your whole family. Take care and God bless! :)

Mara said...

Jen- sorry I dont have youe email at hand... go to my blog - click ont he pray for zoey link and read her entry for 1/17- it made me think of you and maybe it can help.... smile, thinking of you