Saturday, January 10, 2009

Hot chili and Michele

I am gathering my thoughts as I update my blog tonight, so fair warning this will probably ramble a usual. Jude actually slept until 5:40 am this morning so I was so very proud of him! He did wake up at that time having a seizure, but once we administered the klonnopin it stopped. He then ate 4 ounces, and fell back to sleep soundly. So I snuggled deep into my blankets for additional sleep. Even though Em had a friend sleep over, Jude and I defied the outside happenings of our house and slept until 10 today!!! He cuddled next to me in the bed, and we slept deeply. Em got up about 8:30 (I heard her for a split second), but she and her friend had fun watching TV upstairs while we slept in. She and her friend got into the cereal, played rock band, and had a mini makeover. She is growing up so big, and I am so very proud of her! She knew I was very tired, and that if I had woke up I would have been up in the kitchen making them pancakes. She was quiet though, and I thought that was very cute! Em is an amazing person already.
Mike had left really early to go finish his job in Stephenville so I knew I would miss him on my day off. Yet around the time we got up I received a call from him that he had paid his workers, had a meeting with them, etc but he couldn't go to the job site because his primary worker would not be there. It turned out that Jose had another job to attend today so Mike is making the trek to the country on Monday. I am so very happy that Mike will have some time to close that job, and have some time to himself.
So today the model home up the street from us was having an auction of the interior furnishings because the builder had to file bankruptcy. I had received an email from the primary builder telling us the auction would start promptly at 1 pm. I decided I would pack the kiddos up, and go up there for some giggles. Prior to this crisis my primary frivolous goal was to finish decorating our house. This was really because we had gotten a nice but moderate house for a killer deal due to the economy. Anyway, I cannot really afford anything, but I had a few dollars laying around so therefore I thought if I could get a garage sale price on a painting it would make me smile for a day!!! So I packed my little kiddos tightly into the car and drove the mile up the road........only to find out that their had been a mis-type and the auction was at 10...not 1!!!!! So it was over, and I watched the people walk out with all their pretty items. I figured it was for the better because I have no money to spend on ridiculous material items. I was a tad bit jealous though as I saw a lady leave with her $5 COMPLETE high high dollar bedding set.........sigh!!!! So I sat in my car and for the first time since the hospital and had a hissy fit. I had a very selfish cry party because nothing ever goes the right way anymore. Then I pulled myself together and realized I should be happy this happened because I need that $5 for other things! I also realized things go pretty right if I have a good job, a decent house, and a nice family.
Anyway, so my friend Michele or "Fleck" as we call her stopped by tonight. She had called me earlier in the week, and told me she would like to come meet Jude. I told her that would be amazing, and I would throw a pot of chili on. I am glad I met her, and she is one of those people you meet the oddest way. She started dating an old friend of mine from high school that I still stay in touch with. This aforementioned friend was the "quiet guy" that was always so nice, but none of us really knew that well....until recently. He is a genuine good at heart guy that has found his deep down good at heart girl. I am so thrilled for the both of them because they seem to mesh so well. They are both truly good people and that is so hard to find these days, and I am glad they found each other. She barely knows me, but still took the time to come by tonight, and I am so glad she did!!! She walked in and looked oh so cute! She had on adorable boots, a great cream colored coat, and looked just all put together. I was a bit envious for two seconds remembering the days I felt all put together. I felt even more disheveled when she left, and I realized my horrible jeans wouldn't keep the zipper up or my shirt down in the back. HA HA HA! Then I just had to stop and laugh because.........this is my life now ... and I giggled to myself! Anyone decent has to appreciate a zipper that won't stay up...ha! Darn juniors jeans....anyone else have trouble with them buckling in the back, and such? I had a great time getting to know her though, and listening to all she had to say. She held Jude for a long time looking at him, and not his illness. I thought she was so great to see through his issues, and it touched me.

Jude had had his first seizure of the day (since 5:40), about 5pm prior to Michelle arriving at 7, and I was glad she missed out on that experience. Yes, people that is seems he went 12 hours between seizures last night............and today!!! Plus when he had his seizure they only last about 11 minutes (keep in mind they are cluster seizures). Does that mean the meds are actually working??? I emailed a lady I met online regarding her son Finnian who explained to met the meds can be frustrating because they must be adjusted according to weight. In other words they can fail, but even a break from the seizures for a bit is wonderful. I also have another amazing story!!!!! We are keeping faith that Jude will be able to communicate even through his massive brain damage, but since there is a chance he may not I ordered a baby signing book. Prior to the book getting here I was trying to teach Jude his own sign for MAMA. Over the past week I have rubbed his hand on his cheek saying "Mama", and he looks at me intently when I do this. Today while changing him he was being very "vocal" again, and I said "say mama Jude....mama". Well he didn't speak (he is only 4 1/2 months and it's not expected), but he swiped his hand on his cheek.... AND more than once! So I took him out to Mike almost in tears saying "HE SAID MAMA!!!! HE SAID MAMA!!! " and then I explained. Mike took him saying "Say mama Jude....where is mama". Well he didn't swipe his cheek but he rared back looking over Mike's arms right at me, and Mike said "That's right that's MAMA!!!" We had a fleeting overjoying moment of hope.... I mean real hard factual HOPE! Then when we got home I had recorded veggie tales for Jude, and I played it for him while I cooked. I suddenly stopped what I was doing almost as if I was then moving in slow motion realizing Jude was watching his show. So I walked up to him, and said something to him, and in response Jude looked at me, but then looked BACK at his show. The veggie's were singing, and he seemed to be truly "into" what they were doing on the screen. So then Mike tried talking to him, and again Jude looked at him, and then back to his show. He was paying attention, and we felt overwhelmed with love for this little boy. Jude may not ever be normal. He may be as very disabled, but he is ours and we love him. While I was taking a bath today I accidentally overheard Mike whispering to Jude "I love you so much and I cannot imagine my life with you". He didn't think I was listening, but I could not help but reply "Then don't". Mike replied "I never do, but what I mean is that I appreciate him so much and cannot imagine if we never had him.". I guess it's like the People magazine quote regarding Jett Travolta, that even though he was "profoundly disabled" John communicated with him, and any recriprocated communication was always GREATLY appreciated. Our little Jude has already instilled great hope and faith in both of us! I am sure he will continue to do so, and we no longer look at him through tears. We are beginning to look at him through bright hopeful but strained eyes. We adore him, and Em............this is an adventure that we will all conquer together!
As I am writing this "Hey Jude" just started playing ;)


andrea said...

awesome, i am so glad that he signed "mama". how sweet :)

~The~Wacky~Whittons~ said...

Oh how WONDERFUL!! I am so excited for Jude!!! Can he come and teach Declan how to sign??? Declan is 8 months and has yet to even try to say Mama!! Maybe if he signed.... ::sigh:: What an accomplishment for Jude!!!