Hello! Glad you’re here!
If you haven’t heard, I am the proud mama of my little man, Ezra. He is everything to me. My sun, moon, and all the stars.
He’s is 8 months old, sitting up on his own, loves to grab Mommy’s hair and Daddy’s glasses, and giggles while he is “dancing” or “flying.” Peas are his favorite food and he hates naps. He refuses to crawl, and prefers to roll everywhere he wants to go. He is fascinated by our cat and is obsessed with our dog.
He also has a condition called metopic craniosynostosis. Simply put, his forehead skull bones fused too early causing him to have a ridge on his forehead and a head that’s shaped like a triangle.
Now normally, you can’t really tell anything is different. Many people don’t notice his head at first, if at all. The craniosynistosis doesn’t affect his every day life in the slightest and mostly doesn’t affect my partner and my life on a daily basis. Of course we still worry, what parent wouldn’t? But we try to live as normally as possible.
I was inspired to write this post after a seemingly insignificant exchange between myself and a nurse. I was originally going to address this post to that nurse, but after thinking about it, I decided to open the discussion to everyone who will ever encounter a child who is different.
About a month ago, my little guy was really sick, had a fever of 104.6. I hurriedly gave him some ibuprofen and rushed him to the Emergency Department of the children’s hospital were he receives all of his specialized care, thinking it would be easier because they have all his records.
We were taken back immediately because a 7 month old with that high of a fever is a top priority. The first nurse was very sweet and nice, asking all the perfunctory questions medical facilities do and oooing and awwing about how cute Ezra is.
Which is why I absolutely know she didn’t mean anything by her comment. She saw Ezra’s forehead, ran a finger down it and asked, “is it always like that?”
I nodded and explained, “yes, he has craniosynostosis.”
The nurse nodded and responded “Oh, well he looks really good, most kids with that look much worse.”
Her comment was said so off-hand that I don’t even know if she or my partner really paid much attention to it. And the nurse was not necessarily wrong. My baby DOES look pretty good.
But how good he looks doesn’t change the fact that my beautiful, perfect baby boy is going to need major surgery before he is year old to correct his head. It doesn’t change the fact that he may have a learning delay or issues with migraines because of his condition later in life. It doesn’t change the hours and days I’ve spent worrying, crying, and thinking why my baby?
The nurse probably meant to be reassuring, but to me it felt dismissive. As though my baby looks so good his condition isn’t that big of a deal. But craniosynistosis is a big deal.
My advice to everyone who may ever come across a child who is in any way different
Now that I’m a mother to a child who is different, I have a newly found perspective on ways to reassure people and especially parents. My advice is, please, please do not down play their difference, don’t try to find the “silver lining.” If the sentence starts with “well at least it’s not/is” don’t say it. I can’t tell you how many times someone has said to me “well at least it’s treatable” or “at least it’s not cancer.”
Yep. You’re right, at least it’s not worse. I feel so incredibly grateful my baby’s condition is fixable. And I thank my lucky stars it’s not cancer or something else. But, as a parent to a child who will be having a huge surgery, that is not the type of encouragement or reassurance I need.
I know I’ve been guilty of saying similar things to people over the years. And I promise I know people don’t mean to hurt my feelings or be dismissive about my experience and my son’s future experience. I am offering you an alternative view now that I have this unique insight I didn’t have before Ezra was born.
Instead, do this!
Offer words of encouragement. Something like “thank goodness you caught it early.” Or “I’m so glad he’s doing well,” and “I will be thinking/praying/hoping for his safe surgery and recovery.” “He’s really strong, he will be ok.” Or heck you can even say “I’m so sorry you and you’re family are going through this.”
You can also ask me questions about his condition. I am happy to educate people, because in my experience, no one knows what craniosynistosis is. Asking things like “what does the surgery entail?” or “will he always have this condition?” are perfectly good questions.
I love positive encouragement and inquisitiveness. It’s uplifting and makes me feel like you care about his treatment and prognosis. My family and I need all the positivity people can give us and we will gladly take it.
If you want to donate or support a really awesome nonprofit for craniosynostosis click HERE
Let me know what you think! What are some ways you’d like to be reassured? Have you ever had an experience similar to this with yourself or your kid?