Life with Grace

I should be in bed but I'm not quite sleepy enough. The rain bands from Hurricane Alex are hitting again and I'm distracted by the rain hitting the roof. The past couple of weeks have flown by and lots has happened. Grace won't be having surgery this summer. The only reason they are considering the early Fall is to beat flu season. But, the cardiologist said that if she continues to do well on this medicine, then we can wait until next summer. That is what I am hoping and praying for. So, I've been trying to downshift from that stress and focus back on the things I need to get done at home. I bought a kingsize bed since my lovely daughter sleeps with me and is a total bedhog. She was kicking and I wasn't getting any sleep. The new bed comes Thursday, and it can't come fast enough. Last night I got hit at least 3 or 4 times, twice in the head.

Grace and I went to Houston to be on a waiting family panel. I was the only family who had some negative things to say...I wouldn't say I said don't do it but I said to expect the worse and be prepared and that it wasn't easy. I really dislike when parents who have a child with a CHD minimalize that special need as something minor. I'm super glad that your child only has to go to the cardiologist once a year and the hole will close up. That's awesome but that isn't alway the case. Then parents who check that off get a child who is only supposed to have a small hole actually find out it's larger and there has to be surgery and then they feel that this wasn't what they signed up for. I just want all parents who consider CHD to remember that it's major and that there might be the possibility of surgery. Do the research and even then it might not turn out the way you expect. Grace's fix should have been simpler and one time...didn't happen that way because of the anatomy of her heart. I'm also not saying it's a bad thing either. I just want people to be educated about whatever special need they are considering and be honest about what they really could handle. Gracie is the best thing that ever happened to me. She was meant to be my daughter. I just don't think I realized EVERYTHING that was necessary such as all the doctor visits and how minor things are kinda major for us. She is getting better. The lisenipril is helping her majorly. She's feeling better and her naughty nature is coming out. She is in the terrible 2s! She does what you don't want her to do and smile and laughs. She broke a vase at the furniture store and had a grin on her face when she did it. Thank God I had already bought my furniture. Everything is "hers" and every answer is No. She doesn't like to share and it has to be her way. She was ticked at me last night for not having Sprite in the house. But she is also showing her funny side. She laughs more and makes silly faces and jokes. She likes to sing and dance around. She's an amateur beatboxer thanks to Biz and she told me she wants to play drums. Her language is getting better (we're still behind). I see some of my mannerisms showing up in her body language. And her newest word is the Southern greeting of "Hey!" She drives me crazy but I wouldn't want her to be any different. She's my Gracie.