The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
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My Little Blessing
Fiona Hope Blaeske
Fiona Hope Blaeske
My Little Blessing

March 11th, 2010 was a very long day for my husband and I. We went in excited to see an ultrasound of our beautiful baby girl, and left in heartache that she had a major heart defect and clubbed feet. I relive that day often, rereading what I journaled- "I am in so much pain for you and scared of everything our family is about to go through. Your little heart did not form correctly. You are growing, your heart is working, but your heart is not formed right. They also found that your feet are turned in. If that is all that is wrong, both problems are most likely fixable after birth with some major surgeries. I will be praying everyday that that is the extent of the situation. But Baby, there could be a lot more wrong with you. This is what scares me the most and what I really need God's help with being strong." I was terrified because they told me they highly suspected a chromosome disorder as the cuplrit for her other deformities. How stupid I feel now that that was what I was worried about most. Down syndrome. My daughter has a life threatening heart condition and I was scared of her being diagnosed with Down syndrome. We have spent much time in the hospital and with doctors, but my sweet Fiona is doing amazing. At 4 months of age, she has hit all of her milestones within a normal time frame, although she does struggle with low muscle tone and head control. We are now nearing her heart surgery, Jan 6 2011. A surgery I was originally told she would need right away, she has managed fight on her own to push it back to a more safe time to do it. And those little turned in feet I can't get enough of, the way she tucks them so cozily when she sleeps in her swing. Her diagnosis was a slap in the face of what is truly important in life. I am amazed each day by her progress- little things that I took for granted that her twin big brothers did on their own. They love their "sissor, Fona" and her silvery, blue, almond eyes never lose sight of her two crazy brothers . I'm thankful for every day that I get with my little blessing, and pray that God gives me many more. And as far as her Down syndrome diagnosis, well that's just a part of the puzzle that makes up our family. It is no longer two scary words that I dread to hear. How can I be scared of something that is a part of something so precious?

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