What Google Couldn't Tell Me About My Son's Condition

When I found out my son was going to have a cleft lip and palate and a rare chromosome disorder, I did exactly what the doctors told me not to do: I Googled. I Googled everything, every day. It consumed the last four months of my pregnancy, terrified me to give birth to my son, and took away every ounce of hope I had left.

Google told me I would not be able to breastfeed my baby, that he may never walk and that his developmental delay would be severe. While Google told me all of the things my son wouldn’t be able to do, Google didn’t tell me what my son would be able to do.

Google didn’t tell me my son would have the ability to steal the hearts of everybody he met. Google didn’t tell me I would be so in love with his beautiful wide smile or that complete strangers would, too. Google told me people would stare and make rude comments. Google didn’t tell me strangers would go out of their way to tell me that my son is beautiful.

Google told me that my son might not meet certain milestones. Google told me every child is different and would meet their milestones at their own speed. Google didn’t tell me how much joy we would feel when he hit these milestones. Google didn’t tell me how proud I would be to be my son’s mother.

Google told me this first year was going to be hard. Google told me that my baby would go under surgery multiple times this year to correct his “imperfect” face. Google didn’t tell me I would wish for more time with my son’s cleft lip. Google didn’t tell me I would mourn the loss of his first smile.

Google told me a cleft lip and palate was a common birth defect. Google told me I would find support through other parents going through this. Google didn’t tell me that my fellow cleft mom’s would end up being some of my most cherished friends.

Google cannot define my son’s diagnoses, only he can. He will show us what he is capable of and overcome obstacles at his speed, and I think that is something truly special.

Follow this journey at www.cleftconnection.com.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Ectrodactyly Ectodermal Dysplasia Cleft Lip/Palate

Sarah's Lipstick Collection.

Paying 'Lip Service' to Those Who Judge My Cleft Lip Scars

Sitting on my floor, in a black pouch with a white “S” on the side, there is around $406 worth of lipsticks, lipstains, and glosses. In Mac, Too Faced, and CoverGirl casings are bright and bold reds, oranges, purples, blues, and even a few greens. People I met on campus would often say to me, [...]
A mom doing dishes, stressed out with children in the background.

To the Chronically Ill Parent Who Feels Like a Failure

Parenting – it is the most important job on earth. Even for the healthiest person, parenting is not for the faint of heart. Add a chronic illness into the mix and a difficult job can seem impossible. That’s why when I, the mother of four, became ill with chronic Lyme disease and co-infections, starting intensive [...]
college student studying in the library

6 Tips for Being a College Student With Lupus

I feel really lucky that four months after my diagnosis I was able to begin my Masters degree in a foreign country – not everyone gets that pleasure. Often lupus forces people to quit school or university, with hopes of maybe returning when things are a little better. I, however, really didn’t want to put [...]
Sarah dancing.

How Dancing Helped Me Find Myself Again After Transverse Myelitis

Everyone has their strengths and weaknesses; parts of my body may be weak, but I certainly am strong. From dancing since I was just 3 years old and learning how to walk three times in my life, my legs have been through a lot of muscle training — and that’s an understatement! Who would have [...]