Bella was born on a very cold, snowy day. I remember thinking, “Why isn’t she opening her eyes?” But no one seemed concerned, so I tried to focus on her perfect little face.

That evening, she stopped breathing and was rushed away. It was difficult, but I kept expecting them to bring her back. I kept expecting to be reassured that she was fine, and that it was just a fluke but that didn’t happen, and Bella continued to forget to breathe.

After spending some time in the NICU, we came home with an apnea monitor and no reason why. We joked about her not being very good at multi-tasking, but we were really just waiting.  Waiting and hoping.

At our first well-baby check-up, after returning home, a very nervous pediatrician informed us that Bella had Phelan-McDermid syndrome (PMS). He explained that he did not know much about it as it is so rare. He said he was sorry and gave us a packet. We walked out numb, and I didn’t look at that packet for weeks!

It hurt so much.

Bella is two years old now. She still struggles to sit up. She has never said “Mom” or any other words. Sometimes it still hurts so much. But the truth is, there is nothing like snuggling with my Bella. She is pure love and peace, and when she smiles at you – well, there is nothing like that either.

When we named her Bella, which means beauty in Italian, we had no idea the beauty that she would bring into our world. Everyday, I am grateful for my beautiful Bella.

1 thought on “Bella Means Beauty, And Phelan-McDermid Syndrome Can’t Take That Away”

  1. Tessa says:

    I know exactly what you’re going through. My PMS firstborn child is 8 years old by now. It’s good that you try to be brave, but I can say that for me the only remedy is to have another, healthy child, who will fulfill your modest expectations, such as meeting the milestones in ‘What to Expect in the 1st Year’ etc.

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