Moments, New and Old

Well, friends...Christmas is over and so is 2010.

I can't say that this past year has been turbulence free, but I wish to find peace in it.  No regrets, only lessons for the coming moments.

There are some good things I can look back on.  How about healthy children?  Only one bout of sickness in the last year for miss Charlie Lynn when she had croup/bronchitis and it was short lived. At her recent cardiologist appointment, her O2 sat (the amount of oxygen circulating in her blood) was at 100%!  A major milestone in her life.  Another good thing was discovering I did have what it takes to educate my kids.  Homeschooling was always a dream of mine and to have realized it makes me feel wonderful.  I always felt pigeon-holed by the school district and my square pegged children didn't seem to fit too well into their round little classrooms.  I remember that the Doctor who diagnosed Ethan with ASD telling me that his education was the most important thing in his little life and that I could not, no matter what, let him slip through the cracks.   I feel that choosing to educate him at home helped fill in at least 1000 of those cracks.  I am more than a little afraid that he will follow in the footsteps of his dear mother and, realizing what a joke public school can be, create his own cracks to slip through.  All I wish of him (and the other babies) is to follow his mind and his interests into a contented life.

If you know me at all, you know that I read quite a bit.  My husband is quite jealous of my love affair with science fiction and I must admit I would probably give him up if it came down to a choice between him and my Dune novels (But I am assured that if it was between me and his hand planes, I'd be on the first bus out of town).  Anyway, I've been doing a lot of reading lately in articles about congenital heart defects, searching for information relevant to Charlie's defect.  It's kind of a difficult search, as she has no one syndrome or defect, but a bunch of defects that complicate (and even help) each other.   So I can only find information that sort-of applies and I have to keep my mind open to her whole set of defects so that I can visualize what's going on inside of her little chest.

Terel asks me why I put myself through the mental and emotional anguish of reading case after case of articles on the subject, but I can't imagine not doing it.  Just like how I sought information on Autism (and still do), it consumes me.  I feel like I need to know everything about the subjects to understand my children and the role I play in their lives, beyond mother, of course.

One article I read recently brought me to tears while reading it.  It features a woman, Jeni, with Hypoplastic Left Heart Syndrome and is found here.  While it doesn't feature Charlie's defect, HLHS is sort of similar and Charlie will most likely face some of the same challenges that Jeni faces.   It's hard for me to imagine those challenges and how they will affect my pretty little daughter who seems to have such a large spark for life.

At the same time that I am tearfully grateful to read news stories featuring CHD survivors, I feel frustrated because they seem to be all about kids with HLHS.  And then I feel guilty for feeling frustrated.  The HLHS kids need articles published about them as much as any other heart baby.  Awareness for HLHS is also much needed awareness for CHDs in general.  But sometimes I feel lost in the world where parents proclaim their little ones to be 'warriors' against a specific syndrome with a specific name.  I feel guilty for being briefly jealous of these kids' parents for having at least one simple thing in their complex lives.  I realize it's a silly thing to feel and perhaps I am writing it here to show myself that it is a slight thing, a thing to let go of.   But I am hoping the mothers and fathers and others who have experienced the roller coaster of emotion that goes along with having a chronically ill child will understand these feelings and perhaps identify with them.  I know that feeling isolated is, perhaps ironically, a common theme in the lives of those touched by disease, and if nothing else I hope my candidness will help to alleviate another parent's guilt or loneliness for at least a moment or two.

I struggle to find my part in making the world a better place and I hope to find it in helping other families like my own.  Whether it be heart defects, autism, or just helping other young families meet their needs, I would like to fill my new year with kindness, health and peace.  And of course, laughter, friends, and happiness.  There is one more article I'd like to share, one that might bring a little light into the oftentimes dark subject of CHDs and it can be read here.  Let's hope the technology continues to develop and someday the most common birth defect will become the least common.

Let's step into 2011 one moment at a time.