Trying to Celebrate the Month of May

May 1st marks the beginning of the last month of N’s first year. Think about that for a moment. I’ve been dreading this month though it is filled with birth celebrations – mine and his. Tomorrow also kicks off Cri du Chat (CDC) Awareness Week. Something I am to be celebrating but am a little hesitant still. I was ignorant to this syndrome a year ago. In fact one year ago this week I was admitted to the hospital for low fetal movement. I thought I was having a normal, healthy baby and was waiting for news of what this little guy was doing in there. Meanwhile other CDC families were paving the way before us of what would become our journey too. Different, but still the same general roadway.

May 31st marks not just a birth, but also a death. I’ve been grieving the loss of the baby I thought I was having. As time has gone on I look at him less as “Who would you be if you had all of your necessary genetic material?” and more like N. Simply N. And I couldn’t imagine him different. Every night when I go in to peak on him before bed I say to my husband, “I’m keeping him!” Not because I ever have or would consider not, but because in my heart I’m keeping him closer and closer. We were told that he may not make it through the first year but oh, he’s still here. Just look at him. I’m accepting and attaching more every day. This year I’ve been pregnant – not with a baby this time – but with the new knowledge and the new vision for what life will look like with this precious life we’ve been given. It’s meant grieving who I don’t have, but more importantly accepting the little N I do have and love.

I’m learning to celebrate the upside down-ness of it all. That it’s good in it’s own way. He does things that, according to the typical development charts, should be no-big-deal things but they are huge-big-deal things to us. He’s rolling, nearly sitting, getting himself to crawling position, vocalizing pleasure/displeasure, laughing and smiling (rarely). And my personal favorite is that he makes the most amazing eye contact of anyone I’ve ever met.

Happy 11th months Little N. You aren’t so little anymore. Here’s to big things in the year ahead. And maybe, just maybe, some smiles.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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