Today is a gray day. One of those, don't want to get out of bed, snuggle up to Sesame Street, turn off the phone kind of days. It is not a sit and bed and cry day, but more of a BLAH kind of day. However my kids aren't having a gray day. Their essential morning tunes of "I'm hungry Mommy," "Can I have a drink," "What are we going to do today," made me move. I think this blog has been such a therapy for me. Putting it all out there and sharing Lily's story has taken some sort of burden off of me. I feel like I have released all that has happened and I am now ready to open the next chapter. I try to stay in the positive about everything that is going on, but after staying up until past midnight just reading and reading and trying to become more informed, I honestly just felt bummed out.
I hate to think about what could go wrong, what should go wrong, where we will be in 20 years, but I still do. The world is a big scary place and I have a little tiny girl. I feel like this world of Turner Syndrome is a secret world. Only.04% of Americans have Turner's. It is like this unknown phenomenon that I can't get any constant answers from. When I once asked an endocrinologist (who shall not be named -- to protect the guilty) if she would live a full life, he replied with "Well I have heard about TS girls living to 18." Seriously guy? Seriously? 18 is when life starts, it is when we start to discover who we really are as people (and it takes many years after that). He was wrong. Anyone I have talked to with 1/2 a brain has been able to tell me she will live, thrive, love, laugh, hurt, and share herself with us for years and years after that. I don't know why I google things when I know I shouldn't, but alas, I do it anyways. I read about all of the heart conditions and how prevalent they are, how learning disabilities strike our TS girls, and how their short stature can cause ridicule amongst their peers. I have googled it all before, read it all before, but for some reason, it all made today a gray day.
But, kids don't have gray days. They look to Mommy for fun times! So off to kick my own butt and get over my "Woe is me," attitude. Off to shop we go for new snow boots! After that, we will have a "white day," covered in snow and the innocence of a child who will know no boundaries.
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