Sunday, April 24, 2011

Happy Easter!

Today is Easter Sunday and we just got home from a great weekend at the Cape. Meredith has had an amazing weekend and we are savoring every second. No seizures in 2 weeks and we just received the great news that her liver enzymes are normal. When we discovered her Dilantin levels were toxic, we were also informed that her liver enzymes were high, meaning the toxicity was affecting her liver. She's on a more moderate dose now and doing beautifully, but we needed to retest to after 2 weeks to make sure the liver enzymes went back to normal. Otherwise she would have to come off Dilantin immediately and who knows what that would mean for seizure control. So we were happy to start our weekend with the good news that her liver is perfectly normal.

Last week Meredith was super irritable and hardly sleeping at all. She would cry and whine through most of the night and nothing seemed to help. We finally went to the doctor Friday to see if she had an ear infection. Turns out she's got 2 huge molars coming in on the top. Once we discovered that, we were able to better treat her with generous globs of orajel : ) That helped a lot, and finally on Friday night we all got a much needed good nights sleep.

Greg and I have made a lot of progress with our general outlook on things and feel like we are transitioning to the next chapter with all of this. We have not only accepted what is, but are beginning to truly embrace the beauty of the situation. Special needs or otherwise, Meredith is without question the happiest person I have ever met in my life. The simplest things put a HUGE smile on her face and get her belly laughing. Clinking a spoon against a bowl gets a smile almost every time and lately coughing will send her into near hysterics. She demands so little and has filled our lives with such joy. Her differences have been a challenge for Greg and I to adapt to, but she has always been happy. We are more at peace now with the occasional stares and glances and comments. All the well-meaning remarks from strangers that feel like bee stings. "Oh terrible two's.... she must be getting into everything!!!" People looking at us in a restaurant wondering why such a big baby is still drinking from a bottle. Or the quick expression from the hostess who wonders why we decline a high chair - she can't sit in them without flopping over. The friendly administrative lady who offers Meredith a sticker that she pays absolutely no attention to because she's busy looking at her hands and making funny grunting sounds. And then there's the countless number of things people don't say to us because they don't want us to feel bad. I realized this last week when my friend joyfully told me her daughter crawled for the first time. I was so happy for her. I realized then that people don't tell us things like that because they think it will make us feel bad. It actually felt good. Made me feel normal.

They say having a special needs child forces the parents to go through a mourning process. You mourn the loss of the child you didn't have. The child that was supposed to walk and crawl and feed themselves and call you mama and dada. They were supposed to get into everything and you were supposed to baby proof your house. They were supposed to test you and act out and you were supposed to discipline and teach. They were supposed to eat sand and put toys in their diapers and we find them and laugh. We will live a different kind of life. And in many ways this is quite a beautiful and liberating acknowledgment. There are no expectations for Meredith or for us as a family on what our accomplishments should be or what our future should look like. We are officially in unchartered territory and feel like we have just recently arrived at the point where we threw out the map and are just letting the road take us along. When you are in an atypical situation like this sometimes the map just reminds you of all the places you aren't.

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