I have a lot to blog about, and I am unsure exactly where to start so I am afraid this blog may ramble some. The baptism was Saturday, and when I got up that morning both Jude and I were both pretty sick. We had stuffy noses, and were coughing a lot. So we took a warm bath together to try to get some of the crud out. Jude loves his bath time with mommy and he snuggled up close to me in the warm water. Mike came and got him out as usual, and then I dressed him in his sweet baptism outfit. When we got to the church I felt a little out of sorts, and almost like I was on the outside of a dream looking in. So we went through the steps of the baptism, and I was amazed at all the people that came. Although, afterwards when everyone came up to say hello it was a whirlwind of faces. I felt like I did not get enough time to say hello, and thank everyone for coming. I remember during the service thinking that the inside of the church was very surreal, and trying to concentrate on what the father was saying. My mind kept swimming around and around and I felt a little sick. I realized that all these people were here because of Jude, and because he is sick. You never think it will be one of your kids that people are reading a blog about, donating to, or praying about. It's so nice you have people to support you, but the issue itself can be overwhelming. I catch myself apologizing for not concentrating on what people are saying. I even hurt a family members feelings by cutting her off in the middle of a bible story. I just couldn't listen anymore, and when she cried I felt TERRIBLE!!! I try to remind myself that just as I am at a loss regarding how to ease Jude's pain others are at a loss at how to ease mine. When Mike placed Jude's head over the area for the actual baptism Jude was not very happy as seen below:
After the Baptism a lot people went back to our house. Many people brought food, and even little things for Emily. I felt very blessed to have so many great friends and family surrounding us. When everyone left though my mind was tired, and when I looked around I realized nothing had changed. We were still in the same situation, and I went to lay down. We had dropped Emily at my cousins house so I grabbed little Jude, and we went for a nap. Soon Mike came in and laid down beside me just hugging me. He told me he was scared for me. He said he knew I could handle this and even though I seem really down right now that I would pull through. I told him I know I am flustered right now, not making sense sometimes, and very scatter brained. I asked him for patience while I deal with all this. He said he knew I would be fine, but that his real fear was that if we lose Jude I won't be able to make it back from being sad. He explained that I have been through so many tragedies that he isn't sure I could survive this one, and he cannot make it through losing me. I assured him I would be ok, and that I honestly thought the only reason I was still sad right then was because I was mentally and physically exhausted. I guess Mike left because I fell sound asleep as did Jude. When I woke up it was dark outside, and I slowly made my way out of the bedroom. I truly felt refreshed and much better!! So we spent the rest of the night together, and I went back to bed without any problems ... even after my nap. I probably had 12-13 hours of sleep total, and it was great. The next morning I bounced out of bed at 8am making bottles, getting meds, taking a bath, and asking to go to church. Yes, you can call the press if you want to but we went to church!!! My sister, and my friend James had suggested a church that meets at Emily's school. I figured that this place was right up my alley when I walked in and the pastor was wearing jeans, had a tattoo, and was full of energy. I was RIGHT too, because I really liked the service. It ......... of course seemed to fit with what we are dealing with like the words on the bible were slapping us in the face. His sermon seemed to radiate through us, and at one point without us speaking a word Mike and I both looked at Jude. Emily listened with intent, and Jude seemed to sleep but giggle through the sermon. Once the service was over we ventured back home. I sat on the couch holding Jude, and Emily laid on my right shoulder. I thought about how lucky I was. Yep that's right I said lucky!!!! I realized I truly have two beautiful children both who each hold different attributes that make them even more beautiful on the inside. Throughout the day Jude giggled, and smiled more than he ever had. Mike worked with him on holding his head up, and Jude even scooted some on his mat. Emily was patient as usual, and just enjoyed her day with us. Then my phone rang... my aunt had received her Christmas gift from me which was framed pictures of the kids, and she called me bawling saying what a sad situation this is. I corrected her, and told her this was no longer a sad situation because no matter what happens Jude is a joy to us. His tiny little curls that flip up, his big full lips, and his big pretty eyes all combined make up a beautiful little baby. He is our lesson in life, our blessing, and we will do everything we can for him, and he has even inspired Em to seek out a career in the medical industry. We aren't so worried about the medical bills, regular bills, and Jude himself anymore. We are lucky to have a nice house right now, and to have two beautiful kids in that house. I guess we are starting to accept our reality, and we are marching right along with it. We know it won't be easy, but we will all make it. I am also lucky to have an awesome husband who has now dedicated his life to his little boy. I wouldn't want to go through something like this with anyone else, but him. I will write more tomorrow, and as the week progresses regarding making all the appointments with different agencies.
A tired little Jude after a seizure:
A happy Jude:
Jude working with daddy on keeping his head up: