Hand to Hold's Official Blog: Written by Parents for Parents

“Is She Going To Be Normal?”

using the word normal, is he going to be normal, what to say to parents of preemies
Sometimes, when people would ask, the anger I felt at our situation would rise up and boil over in my answer.

“She’s going to be perfect” I’d spit through gritted teeth.

Other times, the weight pressed heavy on my shoulders, bowed and bent under the reply.

“I don’t know. I don’t know. But she’s perfect.” I’d whisper, choking on both the words and the emotions.

“Is she going to be normal?”

Before I had my own child I’d found people too sensitive, the ones who used the phrase “neurotypical.” I lumped it under the category of politically correct, naive to the nuances the word “normal” held.

Afterwards I found I both hated and feared it. Normal. There is no normal in a NICU, there is only alien. My baby even looked like one, when her skin was so translucent that the red light of the pulse ox glowed right through it. When she waved her minuscule hand in our direction it looked like a miniature replica of E.T.

I hated being asked if she was going to be normal and I hated myself for fearing she might not be.

You know, you just know that you’ll love her regardless but when everything about the status-quo shifts all of your hopes and dreams are rocked with it. You rethink everything, including what you used to label normal. Maybe she won’t walk, but that won’t mean she’s abnormal. I see the beauty in her eyes and then bristle at the term “normal” when I hear it used in conjunction with my baby. She was never going to be normal in my eyes anyhow because she is my daughter and I have found her exceptional since the moment I saw two pink lines on a pregnancy test.

We brought her home hooked to tubes and wires and machines and it wasn’t normal but she was home, with us, and it was good. I became friends with the nurses and therapists that were in our house daily and it wasn’t normal but she was getting better and it was good. I often stand nearby and translate her requests, filtering her attempts at words through my voice and maybe that isn’t normal but once they told us she might not speak and now I hear her and it is so good.

If you asked me now I would tell you not to say it, to catch it before it rolls off your tongue and hangs in the air like an omen.

If you asked me now I would tell you to reach for other phrases, “How is she?” “How are you?” “I love you.”

If you ask me now if she is normal, I will still answer, anger abated, that she is perfect. Because she is. I don’t know when the string of complications that began with her early birth will finally unravel or when the effects of it all will unwind themselves from my heart. But I know that in searching to define her I bypass “normal” and flip right to the pages that read “perfect” and “miraculous.”

Kayla Aimee About Kayla Aimee

Kayla Aimee (GA) is the mom of a micro-preemie, Scarlette, who was born at 25 weeks gestation at just 1lb 8.6 ozs and spent 156 days in the NICU, facing a myriad of issues from PDAs to milk protein intolerance to sensory processing disorder. Scarlette is now a feisty four year old who spends her post-NICU days charming everyone she meets.

Kayla Aimee is the author of Anchored: Finding Hope in the Unexpected, a memoir detailing their journey with prematurity, born from her love of writing and her passion for providing support for parents of preemies.

A southern girl through and through, Kayla Aimee writes about faith, family and her favorite things at www.kaylaaimee.com and loves chatting with other parents on her Facebook page

Comments

  1. Melissa D says:

    LOVE seeing you over here! Scarlette is perfect and this is so well-written. Our 26 weeker is 5 already. So many parts of our preemie journey are in the past, but Addie’s triumphs are EXTRAORDINARY and I don’t ever want her to be just normal.

  2. Oh yes, the normal question. I hate it. I dread it. Sometimes, people will say “oh, at least she’s normal.” I want to slip off my body in those moments. I know they mean “she walks, she’s smart, cognitively above average, she looks normal.” Truth is, she has overcome more in 4 years than your average adult, and she thrives in spite of many, many challenges. I also like to say that she is far from normal, or average, she’s extraordinary.

    • So well said. I agree, people still ask so frequently or will comment “Well, at least she’s normal now” and I’m always taken aback because while I know what they mean so many in my circle of friends still deal with significant health issues as a result of prematurity and I’ve never thought of their kids as “not normal” so it makes me cringe.

  3. Exceptional ! No other words!

  4. I remember the shock and anger I felt when someone first asked me that question. It’s such a hurtful thing to ask because it implies that the baby is not “normal” now or would not be “normal” in the future if they had medical issues. There are so many people who are born “normal” and turn out to be horrible people. What defines “normal” anyway? Great post!

  5. Very well said. My 24 weeker twins just turned one. I’ve never had anyone use the word normal, but its so complicated trying to explain to anyone how they are doing now. Great compared to where they were, but definitely not “all caught up” like people expect. I too am very sensitive to people’s wording when it comes to any type of disability or delay.

  6. Miraculous…anyone who has a preemie baby has a miracle in their hands. A life designed with a purpose. Beautiful words you wrote. And so many times I was the one asking in my head, will she be normal not knowing what to expect? ….And she is indeed a miracle of life! Thanks for sharing!

  7. A good friend of mine just had a micro preemie weighing 1 lb 10 oz and 14″ long. I am going to refer her here. I had twins that were preemies but they were not micro preemies so I think this site will be a blessing for her and others like her.

  8. My first was born at 32 weeks, so we knew no other way. He was “normal” to us because we had nothing else to compare it to. It was OUR “normal” 🙂

  9. Beautiful post…thank you from a fellow micro-preemie Mom.

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  1. […] very honored to share that I am now a contributing writer at PreemieBabies101, the blog of the Hand To Hold organization and where I hope that sharing our story will provide […]

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