I Was Scared of My Newborn Son

newborn baby
Image via Rachel Engel

I have always been socially respectful to people with mental and physical disabilities, particularly children. It's the way my sister and I were brought up.

Be polite.
Don't stare.
Smile.

We grew up knowing that a wheelchair didn't limit someone's potential, that blindness wasn't a road block to success. I remember watching The Miracle Worker at a young age, in awe of Helen Keller's determination.

I grew up in a household that taught me people were people; they were not their disabilities. I embraced that.

Or, I thought I did. 

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On April 28, 2014, I gave birth to my second child: a son, Jackson Samuel. We had already been told Jackson had only one functioning kidney, but had been reassured that it was keeping up with the workload, no problem. Everything else seemed to be perfect, we were told.

They were wrong.

Jack was actually born with several anomalies, the extent of which we wouldn't know until we began our ongoing stay–seven weeks, so far–in the NICU. From heart problems to excessive breathing, a hernia-like opening to a slightly bent airway, an immature 7th cranial nerve and the need for a feeding tube due to him aspirating his feeds … from head to toe, it seemed Jack had an abnormality in every body system.

He also had a right hand deformity.

When the doctors popped him over the sheet during my emergency c-section, my tears of joy were the only sound in the room. No one made any mention of his hand at that point.

Nor did they mention it at any point during my three day stay. They glossed over it, as if it didn't exist. My OB disappeared after my surgery quicker than I could blink, and the nurse had to point it out to the on-call pediatrician after his cursory once-over. He basically shrugged his shoulders, and mumbled, “Nothing to be done.”

My husband and I were in shock. The usual happiness that comes after a birth was lost, sucked out of the room. My incessant updates on social media came to a halt. For days, people would text me and message me for an update, because I had literally fallen off the digital planet.

I didn't know what to say. I didn't understand my son. I didn't want to understand my son. At that point, all I wanted was to go back in time, and prevent my pregnancy from ever happening.

I faked a smile through the initial pictures, and faked it through the first few days at home, while I silently cried my eyes out between nighttime feeds.

I couldn't bear to look at his hand. I cropped it out of photos when I finally updated my virtual life. I was irrationally afraid to touch it, having to force myself. I couldn't be that mom– the mom that makes her own son ashamed of his disability.

Twelve days after he was born, his other conditions began to make themselves known, and after rushing him to the ER, he was medically evacuated to a children's hospital two hours from the military base my husband was stationed at.

It was there that I overcame my fear. While Jackson's situation was certainly scary, and still is, with a diagnosis of VACTERL Association, I was surrounded by babies whose prognosis was so much more fragile than his. There were parents literally just waiting for their children to pass away, because there was nothing medically to be done to fix an extra chromosome. 

For seven weeks, my husband and I have lived at the hospital, switching off every 24 hours to spend time with our 2-year-old daughter. At night, while he slept, I would examine his small hand, looking at it from every angle.

I was afraid of him at first, and I rejected him because I wasn't expecting to have to learn to accept him. It was easy to accept strangers: I didn't hold any expectations for them, like I did for my own children. When I was confronted with a change from the “normal” I was expecting, I turned away.

Watching him fight to survive his other more medically serious problems put his hand in perspective. I loved that hand– it was benign; it couldn't hurt him.

It became beautiful.

It was beautiful, because it was Jackson. It's who he was. It's who he is.

Later on, down the road, he will question his hand. Perhaps he'll be angry, or confused, or sad, or ashamed. I'll be able to tell him with absolute certainty that his hand does not define him, and anyone that can't see past his hand doesn't deserve to know him.

I love every tiny inch of my 8-week-old son. I want to know him. 

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What do you think?

I Was Scared of My Newborn Son

Rachel is a stay-at-home-mom to her 4-year-old daughter, Sydney, and her 18-month-old son, Jackson. Her writing can be found all over the web, mostly detailing her own parenting struggles and triumphs, as well as her life as the military spouse of an active-duty airman. She also writes about her life as as a special needs parent on her blog, Tales From the Plastic Crib, and spends an unnecessary amount of time on Twitter. ... More

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22 comments

  1. Profile photo of rebecca rebecca says:

    A good friend of mine was born with only two fingers on each hand.
    He’s done just fine for himself,Has great friends,good job, always out doing outdoorsy stuff.
    And can do all the same things with his hands that anyone else can do.

    Your son will be just fine and working a little harder builds character.

  2. Profile photo of Lara Lara says:

    This made me cry. For so many reasons. I think Jackson’s hand is beautiful too. You are an amazing mommy.

  3. Profile photo of Samantha Samantha says:

    Wow I have a 4month old son and through out the pregnancy we were monitored because of risk of heart and lung defects and also cleft lip and palate the whole time I was terrified he would be born with one or all of those issues and I was afraid because I didn’t know if I would be a good parent to him love him the same or completely reject him I thought that I was horrible for being scared of these things and I also felt jealousy towards my spouse since he had a child with the cleft lip and palate and would know how to care for our son before I did I felt inadequate thank you for you story and letting me know that my feelings were not horrible they were just feelings that some others do share when faced with the” abnormal”

    • Profile photo of Rachel EngelAuthor Rachel Engel says:

      It’s human nature to want things “normal,” and to be scared or worried or afraid of what isn’t. That’s not something I learned right away, because I also though I was an awful person and mom for thinking the way I did. But, there’s nothing in this world I would trade for my sweet boy, he is who he is, and I love him unconditionally. You’re just fine, mama!

  4. Profile photo of Albert Albert says:

    He’ll grow up just fine! 🙂

    • Profile photo of Albert Albert says:

      I was born with ADHD, I’m a little worried about passing it down with my febrile seizures. My son was just born about six weeks ago, and I’m having the hardest time waiting to see him … His mommy and grandmommy is so against me and I still haven’t figured out why … I’m guessing it’s because we had our son at a young age. I’m 23, she’s 20? I don’t know why she’s acting this way to me, my son and my family. My parents seem to be taking it harder. I just don’t understand mothers or fathers who rob their children of much needed love …

  5. Profile photo of Quiana Quiana says:

    Aww! A beautiful story! You’re a great mommy

  6. Profile photo of Robyn Robyn says:

    I needed to read this. Thank you for sharing. For the last month or so they’ve been telling me the warning signs about things that could be wrong with my baby girl. She should be arriving via c-section on March 26th. I’ve gone through a plethora of feelings, emotions, fears, and denial. I’m still not sure they are right! All of the early genetic tests came back perfectly fine. Knowing the emotions you have gone through help me prepare myself.

    • Profile photo of Rachel EngelAuthor Rachel Engel says:

      Hang in there! I can’t decide if I would have wanted to know about his medical problems or not– would that have made it easier? I’m not sure. We only knew about his one working kidney, everything else was a shock that we had to deal with on the fly. I will be thinking about you, Robyn, and your sweet baby girl. I hope that she comes out 100% healthy and ready to take on the world.

  7. Profile photo of Jennifer Jennifer says:

    I totally missed the small hand when I first saw the picture. After reading the article, I had to go back and in order to see it. He is so adorable!

    • Profile photo of Rachel EngelAuthor Rachel Engel says:

      Thank you! Very few people have noticed it, especially since he uses it to pick up his pacifier, and other toys just fine. He’s completely adapted to it, since it’s all he has known, and at 10-months-old, he uses it like any other baby would use their hand. He makes me so proud every day.

  8. Profile photo of Thelma Thelma says:

    I loved this story. Its so touching, moving. I can see why you rejected him at first. Its normal for us to reject that which we don’t understand.
    But I’m honest when telling you this my friend he is adorable. He is a blessing. And he can accomplish anything he wants. Don’t mlet anyone bring you both down. Best wishes.

    • Profile photo of Rachel EngelAuthor Rachel Engel says:

      Thank you so much, and you’re right– he’s precious! I wouldn’t trade any part of him for anything in the world, because it’s HIM. It’s who Jackson is, and Iove everything about him.

  9. Profile photo of Jess Jess says:

    His hand isn’t even something you notice while looking at him. i live behind a lady with a small hand and it took me 4 months seeing her everyday to even notice… Maybe I’m dumb or I just don’t think it affects someone’s personality!

    • Profile photo of Rachel EngelAuthor Rachel Engel says:

      Very few people, if any, have noticed it.They’re too busy looking at his gorgeous eyes, or his puffy cheeks! When he was born, it scared me, because my mind immediately thought of the potential teasing and bullying he will be subject to because of it, and there’s nothing I can do about it.

  10. Profile photo of Austi Austi says:

    Rachel,
    What a tug at my heart-strings. You are so so very brave to have written and admitted to your fears and insecurities. I appreciate your honesty, I myself have wondered how I would react if my child is born with any abnormalities or health issues & I simply cannot imagine it. I see others with children who do and they seem to be unphased by the problems which just boggles my mind. But of course we don’t see behind the smiles, masks, & closed doors. Thank you for writing this and letting me know that my fears do not make me a terrible person. Blessing throughout your journey!

  11. Profile photo of Lindsey Lindsey says:

    I cried. I’m 13 weeks pregnant and I’m afraid to bring someone into this cruel world with even more obstacles than someone “normal”.. Thanks for helping me see things a bit differently.. Your son is adorable btw.

  12. Profile photo of cassie cassie says:

    I had read your other post about your daughter transitioning, as well as this one. Life is so unpredictable but rest assured, you and your husband are doing a great job with your family. May you all be blessed.

  13. Profile photo of Shiloh JohnsonEditor Shiloh Johnson says:

    Thank you for sharing this Rachel! I am in tears reading it, and love how open and honest you are. He is absolutely perfect!

  14. Profile photo of Leslie Leslie says:

    Does not matter what disabilities your children have they will over come it with help. A mother who has learning disabilities, ADD, and autism. My child all has mild autism. She doing great and she is 3. I over came my I’m a teacher.

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