Inconsequential
Our screen saver on our computer currently scrolls through photos and videos from our picture library.
A few days ago I stopped and watched footage and photos of Alvaro within minutes after his birth. I saw his little tiny face, wrinkly skin, and pouty lips. I longed to transport myself through the screen, pick up that 4 lbs 12.8 oz baby and hold him close, kiss his face, and just enjoy who he is.
I got sad as I thought about how sad, even devastated I was when I first found out he had Trisomy 21 (aka Down Syndrome). It was so unexpected. I had no idea what having a child with T21 meant for us, or for him. There was fear, anxiety, grief, and sorrow. I tried to force my heart to feel joy at the precious babe in my arms. All I felt was sadness and fear. And a fierce protectiveness to love this baby and allow him to be whoever God made him to be.
It's so strange, because now his T21 is so.... inconsequential. That's the best word that comes to mind. All the things I love about Alvaro and who he is has nothing to do with his condition. Except maybe his almond shaped eyes that I love to gaze at!
I wish I could sit next to that Mom [me] in the hospital room that February morning, and like the angel in the Nativity story in Luke say, “Do not be afraid. I bring you good news that will cause great joy.." I wish I could show her how awesome this son of hers is. I wish I could erase her fears and rub the sadness away, so that all that was left was celebration.
I will admit that a T21 diagnosis can be daunting. A few people have told me they didn't understand why we were so sad, or why it was such a big deal. I suppose it goes deeper than just being surprised and caught off guard that our son had an extra chromosome. It is a scary thing to take your newborn to his 1 week appointment and be referred to several specialists to make sure he doesn't have a list of possible complications associated with T21. I spent the first 6 weeks of his life going to one or two appointments a week, holding my breath to make sure he didn't have hearing problems, cataracts, heart defects, and other issues. I spent the 2nd half of those 6 weeks looking at my jaundiced baby, going to test after test, praying that he wouldn't need surgery before 6 weeks because his liver wasn't doing its job. (Luckily, it was a "slow" to kick in and was functioning fine). And I was one of the lucky ones! Alvaro was healthy. Praise God! He was strong, with minimal heart problems (only 2 small holes, VSD's to be exact, one which has closed since then and one that hasn't caused any issues and won't).
But honestly, once the routine of life settled in, and those questions were all answered, life became "normal" if you will. And while I was EXHAUSTED having to adjust to having 2 children under 3.... having these boys in my life has been wonderful. Alvaro is an awesome boy. Strong. Determined. Laid back. Loves to dance. Loves music. Friendly to new people. CRAZY about his brother. Enamored with his father. In love with his mother. He's just a great kid.
I wish I knew then what I know now. Cause then I would have gotten on with celebrating instead of being so sad. Alvaro is wonderful. Life with him is rich and full. I wouldn't trade him for anything in the world.
I got sad as I thought about how sad, even devastated I was when I first found out he had Trisomy 21 (aka Down Syndrome). It was so unexpected. I had no idea what having a child with T21 meant for us, or for him. There was fear, anxiety, grief, and sorrow. I tried to force my heart to feel joy at the precious babe in my arms. All I felt was sadness and fear. And a fierce protectiveness to love this baby and allow him to be whoever God made him to be.
It's so strange, because now his T21 is so.... inconsequential. That's the best word that comes to mind. All the things I love about Alvaro and who he is has nothing to do with his condition. Except maybe his almond shaped eyes that I love to gaze at!
I wish I could sit next to that Mom [me] in the hospital room that February morning, and like the angel in the Nativity story in Luke say, “Do not be afraid. I bring you good news that will cause great joy.." I wish I could show her how awesome this son of hers is. I wish I could erase her fears and rub the sadness away, so that all that was left was celebration.
I will admit that a T21 diagnosis can be daunting. A few people have told me they didn't understand why we were so sad, or why it was such a big deal. I suppose it goes deeper than just being surprised and caught off guard that our son had an extra chromosome. It is a scary thing to take your newborn to his 1 week appointment and be referred to several specialists to make sure he doesn't have a list of possible complications associated with T21. I spent the first 6 weeks of his life going to one or two appointments a week, holding my breath to make sure he didn't have hearing problems, cataracts, heart defects, and other issues. I spent the 2nd half of those 6 weeks looking at my jaundiced baby, going to test after test, praying that he wouldn't need surgery before 6 weeks because his liver wasn't doing its job. (Luckily, it was a "slow" to kick in and was functioning fine). And I was one of the lucky ones! Alvaro was healthy. Praise God! He was strong, with minimal heart problems (only 2 small holes, VSD's to be exact, one which has closed since then and one that hasn't caused any issues and won't).
But honestly, once the routine of life settled in, and those questions were all answered, life became "normal" if you will. And while I was EXHAUSTED having to adjust to having 2 children under 3.... having these boys in my life has been wonderful. Alvaro is an awesome boy. Strong. Determined. Laid back. Loves to dance. Loves music. Friendly to new people. CRAZY about his brother. Enamored with his father. In love with his mother. He's just a great kid. I wish I knew then what I know now. Cause then I would have gotten on with celebrating instead of being so sad. Alvaro is wonderful. Life with him is rich and full. I wouldn't trade him for anything in the world.
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