Sunday, February 1, 2009

Wine and Dine night

So the girls came over last night, and we had the "wine and dine" night that I referenced I was going to have. It was a great girls night "in" which consisted of learning to play Partini, eating way to much bad stuff, and having to much wine. It was a great time and it was fun to just let our hair down, and not care about eating to much, or just having fun. Oh.... and if you have not played Partini I highly recommend it! Try throwing a bouncy ball over your shoulder into a cup while someone else is holding it....all without looking....ha! Mike stayed upstairs in his "man cave" with some other husbands, and the kids. He had each guy bring their own PS3 controllers, and games... so they were in man heaven.

We sat down to play Partini, and suddenly Emily came downstairs, and quietly whispered in my ear "Mommy I cannot go to bed because Mikey is in my room with Jude because he is starting a seizure". So I calmly got up, and went upstairs only to walk in right when the audible portion of the seizure was kicking in. The rest of the crowd downstairs began to hear his yelps, and Kelly said they quickly cleaned up the game stating they were sure I would want them to go. Kel tried to re-assure everyone that she was around that this was routine for us, and we wouldn't want anyone to go. We want our lives to stay as normal as possible which means we want others to understand that Jude may have a seizure every now and then, but we go on and so does he. Kel also said a few thought Emily was upset because she was in her room, but little did they realize Emily was in there pouting about going to bed. Emily has come to terms with Jude's seizures, and is very collected when they rear their ugly head. This is nothing new for us, but I did have to remind myself that it was new for our visitors, and it can be very disturbing. Kel has heard Jude on the phone before when he was having a seizure so she understood what was going on. Ginger, and Gina both came to see Jude while he was seizing and offer comfort. They seemed phased, but reactive in the situation. The others were very concerned in the kitchen, and once the seizure subsided I went to reassure them all was okay. I saw their tears forming in their eyes, and I tried to explain to them that as horrible as it sounds to just remember the seizures do not hurt him. I saw Darla and Fleck both really tearing up, and Darla said his yelps were hard to hear. She then said "It just makes me really appreciate having a normal healthy child". Sometimes I am almost glad that parents get to see his seizures and hear them. Not that I would want to subject anyone to that, or put Jude on display but it does lend an appreciation few can understand. I am not sure they truly knew how terrible the seizures sounded until last night. It seems like once a person actually sees him going through a seizure it's a new understanding of his entire situation. Jude looks like a normal healthy baby so you can easily forget he is afflicted with issues. Fleck mentioned how you can read about the seizures on my blog, but when you hear them it's different. It is hard to handle, it is unfair, and it is nothing we can cure. This is our daily routine so all you can do is learn to manage your life, and stay calm. It's a new way of understanding and managing life. It's also a new way to me of looking at a child, and I explained that to them. I said "any smile, giggle, or milestone we get makes us cry each time because we appreciate the effort Jude puts in to achieving that. Maybe I had Jude to appreciate everything Emily does more, because believe me I do". Each child is special, and I think Jude has touched the lives of the adults around us to let them recognize just how special their babies are. A quote I found that fits this occasion, "Henri Nouwen: When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

After the eventful seizure we all settled back down, and Jude went FAST to sleep. We then stuffed ourselves full of more food, wine, and conversation. We talked about old memories with my friends I have had since high school, and new memories with those great friends we have recently made. I feel so honored to have each of those women in my life. I truly feel blessed that I have great friends. I know that sounds a bit corny, but it's true. If you can find just 1 person who has a genuine soul and that is honest, caring, and loyal then you are so lucky. I have found several so I am indeed blessed.

** I wrote the above blog earlier in a hurry while Jude was resting so please forgive my earlier typo's. I was in a hurry because I could hear him stirring. As an update Jude is doing well today, and we have cuddled together most of the day. He experienced one horrible seizure this afternoon, but one is better!!! We can only hope that the Topamax increase is showing it's appearance. We are about to administer his nightly meds...........if we can get him to wake up. I hope everyone has a safe and blessed week. Also, let's hope that next year the Cowboys are in the Super bowl and therefore I won't watch the TV with great interest.... just to see the Boss, and thus showing my old age :).


andrea said...

You said it in a nutshell...always appreciate what you have, never be envious or jealous because someone has more, and just love, love your kids.

You continue to inspire me everyday, and you courage just is overwhelming. There is HOPE for Jude, and he will overcome...

Ellen said...

Hey. I am glad you had a nice night with your friends, and that you were able to carry on after Jude had his seizure.

Are the doctors still working on coming up with the right mix of medications for him? That could stop the seizures?

Cjengo said...

Ellen ~ They are trying, but these type of seizures are very difficult to control. We are working on finding the right combination. I am beginning to understand that even if we find the right combo then it must always be changed because he will gain weight, and grow. Thanks for keeping up!

~The~Wacky~Whittons~ said...

Don't you know I meant to tell you this last night when I read, after being sick with the flu for a few days, Declan started getting around to his happy baby self. He smiled for the first time in DAYS. I was so excited I almost cried. I understand what you mean now. Not to your level but the next time Jude smiles, kiss him for me too!!