I fully intended to take a break from this blog for a few weeks, but not 2 months! The summer has just flown by and now we are 2 weeks out from the new school year. Lily will be starting Kindergarten (half-day) this Fall. And yes, it is almost impossible to fathom that I have a 5 year old child. Wow!! I am both excited and nervous for what is to come.... Lily has always been in full-time daycare/pre-school since she was 6 months old. So the concept of school is not a new one. However, the concept of public school is. In all honesty, I think she is really excited about being a "big girl" and making new friends. I on the other hand am more anxious than ever about having to "work with" a new school nurse, teacher, and administration who has most likely never had to deal with a child who has a complex CHD.
I don't think the general population realizes how nerve-wracking this truly is? Even my own husband tells me, "she will be fine." And I know that my strong-willed, stubborn, bossy, loving child will be just fine. But, that never stops my mind from worrying. In fact, I have stated on multiple occassions recently that I believe I have "seasonal anxiety." I don't even know if there is such a thing as seasonal anxiety? Please feel free to let me know if there is? This time of year has always brought out a lot of stress for me, but I am feeling it earlier, and stronger than ever before. I guess only time will tell if it starts to ease up a bit?
I also just wanted to mention about a dear friend of mine Kate Longley. Her daughter Faith, 6 lost her battle with CHD this past week. She had a Fontan revision a few weeks back to place a fenestration (hole) due to a problem with fluid retention. During the surgery or shortly thereafter she experienced an anoxic event which involved lack of oxygen to her brain and some significant damage. While she was in the hospital recovering she spiked a high fever, went into respiratory distress, and passed away in her mother's arms. Any death in the CHD community is tragic, but this one really hit home for me, as Kate was one of the last people I spoke with before my daughter Lily's Fontan surgery back in July 2009. She has always been a source of support for me, and our children are very close in age and both have HLHS. To say that this tragic death hit home, would be an understatement. It just reminds me how precious our kids and life is in general. Here today, but gone tomorrow..... I just want Kate and the entire Longley family to know that I am thinking of them always, and sending prayers as they lay sweet Faith to rest today.
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