I was mourning the wrong loss, and I didn’t even know it.

The nurses took Nicholas away to get treatments for jaundice.  They left us alone in the room, and suggested we get some sleep. It was only hours after we were told about their suspicions of Down syndrome. When we were initially told about it, I remained stone cold, with an “okay, that’s fine” demeanor.  I couldn’t let the nurse see my real reaction, right?

That hard exterior was getting harder to uphold with each passing hour.

The nurses who took him advised us to take a nap.  They knew how long we had been awake, even though we didn’t.  It was the middle of the day, and the curtains were doing nothing to keep out the sun.  The nurses put a “do not disturb” sign outside of our door so that we could rest.

When they closed the door, something came over me.  We were alone.  There was no one to impress, no one to be embarrassed in front of.

Just us.

The headache I had sticks out in my memory.  It was the most painful headache I have ever had, radiating through my eyeballs and down my neck.  I laid there with my eyes closed, because the light felt like knives.  The only thing more painful than my post-birth wounds were the thoughts running through my head.  Nick was laying on the fold-out hospital chair beside me.  My back was to him.

I was feeling uncertainty about my soon-to-be husband.  What was going through his mind?  Was he mad?  Sad?  Was he mad at me for being sad?  Someone who I always counted on and felt like I knew better than anyone was suddenly a mystery to me.

Thoughts were going through my head faster than they ever had before.  Who was that child?  What are we going to do?  Will he need surgery?  Will he be able to walk?  Talk?

My true feelings finally had a chance to show.  I inhaled, and then cried harder than I have ever cried before.  I started sobbing uncontrollably, and could hardly breath.  “My boy” I whispered under my breath between sobs. “No, no.  My baby boy.”

It felt like he had died.  I know I have written about this mourning feeling before, but it is the only way I can describe this deep sadness that I felt.  It was like the boy that I imagined having was snatched from my body and taken from me, never to be seen again.  I guess having them take him for treatments made that feeling more real than ever.

Before I knew it, I heard the crinkle of the overused hospital chair behind me.  I felt Nick get into the hospital bed and wrap his body around mine.  After you have a baby, you aren’t exactly back to your fighting weight right away.  You are about the same size as you were pregnant, except the belly that was once firm with life is now a half empty water balloon.  Somehow, though, Nick wrapping his body around mine made me feel tiny, and he was like a protective cover around my shaking frame.

“It’s okay Mary,” he whispered into my ear.  “He’s our boy.  We got this.  It’s okay.  He will have a great life.  We will be fine.”

All my doubts about my husband washed away in that moment.  He wasn’t mad, and I should have known it.  This boy that we made is our blood.  He is in our pack now.  We must be a team.  We must be fierce.  We must work hard to make sure he has the best possible life.  I could feel his determination in that embrace.

He laid there and held me while I cried.  Eventually, I fell asleep.

When I woke up, I walked to the bathroom and closed the door.  I took a good look at myself in the mirror.  The whites of my eyes were completely red from crying.  The skin around my eyes was puffy and displaying some red pillow creases.  The mascara that I put on from the earlier visits was smudged under my eyes.  My hair was in a big knot on my head, and I was wearing a pink nightgown with a blood stain on it.  I didn’t know how I got the stain, and I honestly didn’t care.

That was my rock bottom.

That was the death of the old Mary.

It wasn’t my boy who I needed to mourn that day, thank god. It was the woman that I used to be.

Gone was the selfish person who always wanted to make sure everything was as best as it could be.  Gone was the person who felt as if she were “untouchable,” and nothing could ever happen to her.  Gone was the person who felt like it was bad to let people see when she is sad or angry.

I liked that person, sure, but she couldn’t walk this journey with Nicholas.  She didn’t have the emotional capacity.  I had to let her go.

The person who I am now is much more equipped to be Nicholas’ mom.  I feel as though I have gone through a metamorphosis.  Although it was a painful one, I am stronger because of it.  There is nothing that can come my way that my family can’t face together.

Almost ten months later, that mourning feeling seems like a distant memory.  I have gone through as much change on the inside as you can see Nicholas has on the outside.  With each milestone that Nicholas surpasses, I too am growing.

I have learned to slow down, and really enjoy my life.  I no longer sweat the small stuff.  I no longer fear change.  I no longer have a doubt in my mind about my son.  He succeeds at his own pace, and I am enjoying every second of it.

Thank you, Nicholas, for making me better, for brightening my days with your smile, and for making me a fierce mommy.



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I was shocked as a new mom to find out that my son has Down Syndrome. I had no idea that my life would be changed for the better! Now, I am using my passion for writing to spread awareness and acceptance for people with Down syndrome.

10 thoughts on “I was mourning the wrong loss, and I didn’t even know it.

  1. ❤️❤️❤️❤️❤️❤️❤️thank you Mary for putting words to feelings that moms can relate too. You are a beautiful writer and a wonderful mom!!

  2. Mary, you are such an amazing person. I know we met very briefly at Annie’s wedding but I subscribed to your blog because I felt connected to you since our babies had the same due date. You are an amazing writer and I love the honesty you put into your posts. Reading your blog makes me feel better about the thoughts that I have as a new mom and even though I can’t totally relate to what it’s like having a child with Down syndrome a lot of your thoughts have gone through my head also. No matter what we are in the same mom team! I just had to say how I think you are an amazing mom and Nicholas is so lucky to have you. I have a cousin with Down syndrome and she is such an a amazing person, and I feel a lot of that is because her mom has fiercely advocated for her and you are obviously doing that for your son! You go girl!

  3. Beautiful, and beautifully written. I have gone through my fair share of mourning too this past year, and it is amazing how love pulls us out of darkness and back into light.

  4. Mary! You have an incredible way of writing in a way that touches everyone. I don’t think there is a mom out there who can’t relate to your feelings in one way or another. I tear up every time I read your stories. I think that you must realize that this mom thing connects us in a way that is unexplainable. We all have fears about our babies and how hard it is to protect them from the world outside the comfort of our bellies. That never goes away. In different ways, most moms have felt similar feelings as new moms…and as more seasoned moms of many! 😊

    I did not know the “old Mary” very long…but I can tell you this…the “new…mom Mary” is so amazing and inspirational. God hand picked you and Nick to raise this incredible little boy and you are just killing it!

  5. This is such a beautiful story. I always love stories where a person grows stronger from it, and this one did not disappoint. I only know a little bit about Down syndrome. My brother has alopecia, and a lot of kids would bully him just because he is “different.” I hope you have some fun with your son!

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