Friday, December 19, 2008


Good morning. Well I did end up leaving work a bit early yesterday since I worked through lunch. It was nice to get home before it was dark, and to see the kids for a bit. We then ended up going to drop of Christmas gifts at my cousins house because they are leaving for Missouri today. We aren't leaving for Missouri until Christmas night so I wanted to make sure her kids had their gifts. She had called me when I was leaving work to confirm if I was stopping by, and to invite us in for a drink. I told her that I would bring in Jude, but that "he might have a seizure and is that ok?". She said "Um no you cannot bring your seizure baby into my house"... that sounds terrible, but it was funny! My cousin has that rare sense of humor that will sound inappropriate but be very very funny. Anyway, she then said "Of course you can bring Jude in...we love him and accept him just the way he is". awwww! Jude woke up for a bit at her house, and luckily did not have a seizure. He looked around at everyone for awhile, and I tried to coax a smile out of him. When we left it was time for Em to head to bed, and time for Jude to eat so we rushed home. After we made Jude's bottle Mike popped in the movie I fell asleep during the night before, and we watched it while I fed him. Jude only took about two ounces, and I noticed he was getting a little stiff. It's like I could tell a seizure was about to come on. So I told Mike I was heading downstairs to lay down with him. I thought if I got him in a calm quiet atmosphere it may help. Well he did close his eyes, but once he started to fall asleep the seizure hit. His eyes popped open, and I saw his head drop to his chest in the routine manner it always does. So I ran to the foot of the stairs and called Mike down. We could not give him any more of the sedative so we simply had to soothe him through this one. Afterwards Jude was very tired, and he and I fell fast asleep together. I guess Mike moved him to the bassinet whenever he came to sleep, because the next thing I remember is hearing noise coming from his tiny bed. I looked at the clock and it was 5am, and I was afraid he was waking up seizing again. Luckily ..... he was just hungry! He laid there with us for a bit longer in and out of sleep, and finally about 6 he wanted breakfast NOW. I could hear him sucking on his hand so Mike went and fixed him a bottle. He was up for awhile after that smiling, and cooing. Those are the moments we truly feel blessed with Jude.
For the first time last night Mike and I both looked into Judes face and saw the small child in him vs the baby face. We also saw the special needs look, and probably what lies ahead which scares us a bit. Although, in a way it isn't so scary anymore. Jude has one eye that is a bit lazy, and his head is still rather floppy at times. We talked about that some, and Mike teared up again. Plus for the first time Mike allowed himself a "me" moment, and I think that's healthy. You cannot be positive all the time. Anyway, he said "I feel like I am in jail and every morning I wake up to the same sentence, and my life will never be the same again". I assured him there are times I feel like that too. There are times I want to run away to somewhere warm with the family, and pretend all is ok. Then Jude would coo, and Mike would forget his worries and remember how adorable he is. So Mike would scoop Jude up and tell him "You are beautiful boy!" He is such a good dad. There is a part of me that feels a bit distant from baby Jude since I am now back at work. I hate that, and I need to get that under control. I almost feel like Mike is the person I run to instead of Mike running to me about Jude. I know that is just from this being a transition, but it's still throwing me a little off. I just miss him during the day, and Em!
Anyway, Em came downstairs about 7am, and sat on the bed while I talked with Jude. He was smiley, and Em was being funny. It was a nice way to start the morning.....and it was seizure free!

** Today at work I received a phone call from Social Security about Jude. It seems since I get child support on Emily.. Jude now won't qualify. Go figure that! Our government can provide 17 billion dollars to a car industry that's failing but........well don't even get me started..grr! Anyway, I have 3 dependants now, but Em doesn't count per the government (staring blankly). Although I did reach a sweet little lady, and with another friends help got bumped up for medically dependant children list. That will help us ALOT! Since Jude is having severe seizures he may qualify sooner....we were in a line of like 12,000!!! It will still be a few months, but MDCP provides support for families that do carry insurance, have jobs, etc. My understanding is they provide what the insurance won't cover such as therapy, chairs, nursing, etc. That will be wonderful if it comes through. Like I have pointed out before we are some of the lucky ones! I have a good job, good insurance, supportive friends, and a loving family. So we have a lot of support and are not drowning... I just feel for those that are drowning, and who deal with this system. It can be very confusing.

1 comment:

Mara said...

Hey- was that regular SS or SSDI ??? I would think that Jude would qualify for SSDI ! Let me know, we were thinking for appling for Kayden