One of the toughest questions I have to answer often as a mother is, “How many children do you have?” I never thought such a simple question could turn my world upside down. If I am in a good place mentally, I might reply, “Do you want the real answer?”  

I was one of those people who did things according to plan: met a great guy, dated for a while, got engaged, got married, and then got pregnant… quickly. Everything was going according to my plan. I now look back at those times and cringe because I was so innocent and unaware. Life is not always simple. It doesn’t always go according to plan. 

I was about to learn some hard truths in a real way. 

We planned a family gender reveal for the night of my 20 week anatomy scan, expecting the sex of our baby to be the focus of the appointment. But during the scan, a leg abnormality was found on my son. 

I didn’t want to rob our families of the excitement of finding out the sex of the FIRST grandbaby, so I masked my fear at the party that night. Thinking back, this was when my journey of strength truly began. While I wanted to lay in bed and cry, I pulled it together. I did it for my family and for my son, Joey, who deserved to be celebrated. 

The next day, we called our families and told them what the ultrasound found. It was a relief to tell the truth, especially to my mom, who has been a neonatal nurse for over 40 years. Our support system was now there for us, which was helpful because over the next few weeks, we met with countless specialists who offered many recommendations. It was overwhelming to say the least. My son wouldn’t be able to walk like other children, and would require extensive therapy. One doctor who sat us down in a little room said, “This isn’t going to be the hardest news I deliver today; you should be grateful.” Well, that didn’t go over well with me. I know now that was because it wasn’t a life or death situation. My son, at that time, would only have physical struggles that were able to be corrected. The outlook was positive, as he was going to survive; he just would need assistance hitting some milestones. 

After I accepted my new normal, I went to work and continued with my pregnancy as if everything was fine. During my back to school orientation, I was sitting in a friend’s classroom and started feeling warm. After hours of phone calls back and forth with the OBGYN’s office, I was sent to triage. My husband was out of town for work, but thankfully my mother was able to come with me as I was thrust into the unknown.  

What happened next was a blur. I was diagnosed with preeclampsia and was told I would be in the hospital on bedrest until I delivered. I was only 22 weeks along at the time. 

After only a week since being admitted for hospital bedrest, Joey was having a deceleration of his heart. I was rushed into an emergency C-section. Our one pound miracle was quickly wheeled off to the NICU without having the opportunity to touch his mother. I knew that NICUs were special places and could provide him with the best care possible.  I had to trust that. 

My heart rate went high during delivery and I also had to recover from the c-section, which was hard on my body. I wanted to get up out of bed and see my baby, but I was being pumped with medicine to keep my blood pressure down, so my only option was to stay put. I had to make sure that I was staying alive.

Joey made it through the crucial first 48 hours, which is usually a good sign; but he was extremely tiny and very sick. We can only assume all the spikes in blood pressure caused harm to his internal organs during development in the womb. His heart valves were not functioning as they should, and neither were his kidneys.

After a week, it was time to make a decision – a point that no parent should have to get to. We had to choose between massive surgery to correct his heart valves or comfort care. The surgery was extremely risky, and there are no guarantees in life. We didn’t want our baby to die on an operating table alone, so we decided on comfort care. 

We gave our families the opportunity to say goodbye, and for some, they were saying hello and goodbye at the same time. After eight days of fighting to stay alive, our son no longer had to fight. He peacefully went to heaven in my arms. He opened his eyes for the first time in those moments, a miracle for us. 

The next few days are foggy. The funeral came and went. My house looked like a funeral home with big bouquets of flowers and cards all over the living room.  I went to Target too many times to count. I was actively grieving but had no idea I was grieving. I put one foot in front of another, trying to be strong, and that took a lot of effort. 

I was now a member of a club I never even knew existed.  I was grateful in some ways because I got to see my baby hold him, change his diaper, and take photos of him. I had proof that he was here, and I even have the social security card to prove it. He did exist. And he was mine. 

It’s been nine years, and now I answer the question of how many children you have, with the simple answer of “2.” I learned the hard way that people don’t know how to respond to an answer that isn’t straightforward. Once I become comfortable with a new friend, I often open up about my story. 

If you have a friend or are reading this story because you are going through this unimaginable experience, here are some things that helped me: 

  • Feel how you want to feel. A dear friend gave me this advice. At one point, I routinely tried to hide my feelings. But when I allowed myself to be vulnerable and actually feel those feelings, I was able to begin the healing process. It was tough, and it was ugly. I have friends who stuck by me through those tough times, and while there are no words to make it better, the fact that they are still a part of my life is what matters.
  • Don’t worry about the future. While I was still only a few days past the funeral, I began to worry about how I was going to sign my Christmas cards. Should I write his name on the card, or would that be too depressing. Would it hurt his feelings if I didn’t acknowledge his name on a birthday card? My thinking was way further ahead than my heart was ready for. When the time came to sign Christmas cards, I wasn’t worried about how to sign the cards. I wish I could go back and tell myself to focus on making it through that specific day.
  • Treat yourself with kindness during the hard times. I decided that I would celebrate his birthday and not focus on the day he died. Each year on his birthday, I do something special for myself, because I did give birth to him. Over the years, that has changed from buying myself a new handbag, to this year, buying my favorite Starbucks beverage. Even though I cannot celebrate his birthday with him , I can still celebrate that he made me a mom.

Even though every morning when I wake up he is the FIRST thing I think about, I make sure I have something to look forward to that day. I do this every morning. I am now able to see the beauty that came from that difficult time. I made new friends. I found out who my true friends really are. I spent more time with my amazing family. I realized how strong I truly am, and learned to appreciate life so much more. 

On October 15, Pregnancy and Infant Loss Remembrance Day, I will be lighting a candle in honor of my son, and hope you will light one too. If you don’t know of anyone who lost their child, light one for Joey. If you do know someone who experienced this devastating loss, light the candle, and send a picture to them, with a heart. There are no words to say, and I learned that less is more. 

Grieving mothers want to know what other people think of their babies too. We want to know that they are not forgotten. 

Author: Amy Mattioli. Amy is a special education teacher of 15 years of experience. She has two kids with her husband Joe. She loves taking long walks with her dog, Cali, and spending time with her family. She hopes her story of resilience brings hope to other women. 


Sidelines: High Risk Pregnancies Support

Still Standing Magazine: Child Loss and Infertility

Center for Growth: Baby Loss and Rainbow Babies 

Glow in the Woods: For Babylost Mothers and Fathers 

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