Thursday, December 30, 2004

Play it Spectacularly Everday!

"Our lives may very well be composed before we're even born, though like a musical score, countless variations can be realized." ~author unknown

With that thought, we all need to realize that the muscial score of our lives will be played at the beat, tempos and lyrics that we chose,,,,so make sure you play it spectacularly everyday!

Well, I have been so caught up in the hustle and bustle of the season and I haven’t had a chance to sit down and reflect on our days with Emma Sage. Since it is the time of the year to reflect and make resolutions, I guess now is as good as any time to make time in my day to sit and write.

One thing that has been on my mind during this season of faith and love, is that every child, ever person in this world is a child of God, that we are all part of a world that radiates in faith and love,,,so many faiths,,,,so many ways to love……as children of God.

A question was posed recently on a Down syndrome list I belong to. I watched the topic bounce back and forth and put forth my thoughts when a question was posed to the whole group. I answered as I truly believe, that Emma Sage is here for a purpose and reason, just as any of us are, and that her diagnosis of Down syndrome is not a disease that needs to be cured, but of an amazing genetic make-up that varies from the norm.

Would I seek out a ‘cure’ for Emma Sage’s Down syndrome? No I would not and my reasons being my complete faith in God and a divine purpose. Would I seek out ‘cures’ for medical conditions that might, or might not be because of her T21, yes, of course. Having Hypothyroidism effects growth, metabolism and cognitive ability. It is ‘cured’ with replacement thyroid hormones [I know, I have had hypothyroidism since I was 18 and on synthroid]….but it does not fundamentally alter your genetic make up, and that is what a ‘cure’ would do if one were to be found. The same goes for the heart or any other medical condition that is statistically higher in people with T21, but not immune to the general population….there are medical cures that treat the conditions presented.

But to find a ‘cure’ for the over expression of the extra chromosome in a person with T21 is in fact, genetically altering the person.

I don’t see Down syndrome to be a disease, nor a condition that needs to be ‘fixed’ to fit the norm.

So during this season of faith, love, hope, peace, joy, new beginnings and sad endings and mostly about miracles I look at my little girl and reflect in the magic and wonder of life…..of all life, 46’d or 47’d chromosome and know that all we have is play it spectacularly!