Loss of Child

Navigating Life After Losing Your Only Child – by Zayda Santiago

I married my husband Rafael on February 14, 1987, which I lovingly call Love Day in honor of Valentine’s Day. It was very cold with snow on the ground, yet it was a beautiful day – the beginning of the rest of our lives.

We were very young by today’s world standards. I was twenty-three years old, and Rafael was twenty-five. Imagine two young adults starting a life together with no idea of what the future would hold. It was exciting yet very challenging at the same time. One thing is for sure, we were determined to make our marriage work. Thirty-four years later and we are better than ever.

I was blessed with two Bonus Sons, Christopher and Rafael Jr, and was so excited when I found out I was pregnant in October 1989. I wanted a girl but would have been happy with a boy. I called my husband, and he was ecstatic. The pregnancy went well with no issues, but I specifically remember having a hard time sleeping in my last trimester. I was so uncomfortable and usually laid on my side. When Rafael would lay next to me, the baby would start kicking so hard. It was like the baby didn’t want him sleeping with me (smile).

Our baby girl was due date was July 31, 1990. However, she was born eighteen days early on July 13, 1990. That Friday was the best day of our lives. We named her Genessa Jazmine Santiago and called her Nessa. It’s funny, people usually are shocked when hearing she was born on Friday the 13th, but it was the best day of my life. We had so many dreams for her – to go to school, play sports, go to college, eventually get married to a Godly man, and have children. She had her entire life ahead of her and could do and be whatever she wanted. The world was at her feet.

Nessa was a very inquisitive child. She always asked many questions, and one-word answers were not enough. She loved Barney, even after it was no longer cool to do so. She just hid it once she got into kindergarten. This was our little secret.

As she grew older, you couldn’t help but love her unique personality. She was always the life of the party, and the loudest one in the room, completely enjoying her life. If you were her family or friend, she was loyal to the end.

On May 3, 2014, I was headed to my morning workout. Around 8 am, I received a call that no parent would ever want to receive. I remember it being cloudy outside with the sun unsuccessfully trying to breakthrough. One of Genessa’s friends called screaming through the phone that my daughter was unconscious and being rushed to the hospital. After hanging up, I immediately called Rafael yelling while changing direction and rushing to the hospital. I was so scared, but I kept telling myself that she would be fine. I would not accept any other outcome.

The doctors came in with a bunch of questions that I simply could not answer – who had she been with, how long was she unconscious? They kept coming in and out of the room and we didn’t know what to say and how to answer. Once my sister Providencia, who was a nurse anesthetist arrived, she was able to understand what was going on and began to communicate with the doctors. As I listened, I didn’t always understand. My husband and I could not wrap our heads around what was going on. I specifically remember the look my sister gave the doctors when she said, “Do everything you can to keep my niece alive.” In my despair, I did not pick up what that meant. However, I knew she was coming home, and it didn’t matter what anyone said. She was going to live. Everyone around me was sad but I just prayed and prayed and knew she would be fine.

We stayed at the hospital the entire time. I ate little, drank little, talked little; I just stood guard, waiting for her to wake up. Nessa wanted to be an organ donor. I asked her not to put that on her identification, but she felt strongly about it and did so anyway. She reasoned, “Mommy if something ever happens to me all that will be done is that I will be buried. This way I can save someone’s life.” I told her I understood, but she was going to live a long life, so her organs would be all shriveled up. We both laughed.  I had forgotten about that conversation until now.

The organ donor representatives came to me and Rafael that night. They advised that she was an organ donor and wanted our permission to take her organs. I looked at them like they were crazy. My daughter was a healthy and beautiful 23-year-old young woman. I responded that she was coming home with me, so no, they could not have her organs.

Hours later, we learned our girl was brain dead, and the machines were keeping her alive. Upon hearing this, I didn’t cry. I was numb with shock and just couldn’t believe it. You see, I knew the God I serve would save her. She was going to recover and be of sound mind. She was not going to die, there was no way this could happen. God knew she was my only child; He would not do this to me. There was just no way.

The people came back about her organs. They sat quietly next to me at first. Then they explained the process and asked us again “Would you be willing to donate her organs?” Knowing our daughter’s wishes, we said yes. I started to cry uncontrollably as it finally sunk in. She was gone and there was nothing I could do about it. No amount of praying or pleading would bring her back. Our Nessa donated both her kidneys and saved two lives, a male, and a female.

Family and friends came to the hospital to say goodbye and then finally Rafael and I said one final goodbye to our sweet daughter, then slowly and quietly left her in that room. At first, it did not seem real, more like a bad nightmare. At home, I would stare at the door expecting her to walk in. How would we ever get through this?

It was very difficult after her 1st heavenly anniversary when reality finally set in. I would never see my only child again. I grew even sadder and angrier than before. I cried out to God, “You allowed this to happen. You could have saved her!” I felt betrayed. I believed in God. I knew what He could do! I began to question Him; I couldn’t stop asking why? Why, WHY? Silence is all I ever got in return. Nothing but dreadful silence. God not responding hurt me so deeply. I was disappointed in Him and let Him know that. Then I questioned why He didn’t take me instead, as my daughter had so much life ahead of her. Then, I started questioning myself – did I pray hard enough, did I believe enough? Why didn’t I get my miracle?

I wore a brave face. I put my makeup on, kept my hair done, and dressed nicely, so no one knew what I was going through. I would grieve – crying and calling out her name in the car on the way to work. Once I got there, I would wipe my tears and clean my face before going into the building. I would do the same thing on the way home. To everyone else, I appeared to be fine.

But I wasn’t fine. Behind closed doors, I wanted to take my life – but I knew the Word of God, I knew God wouldn’t allow it. It was so unfair that I had to suffer and grieve for the rest of my life.

I remember once Nessa visited me in a dream. We were in a room together lying-in bed and talking. Eventually, she told me she had to go so her brothers could be saved. I felt extremely sad once I woke up, wishing I could have just had a few more minutes with her.

As life went on, I eventually learned to forgive God for not trusting that He had my best interest at heart. At first, I wanted the life I had before, I didn’t want this new life. Once I accepted that Nessa would never come home again and that my life would never be as before I was able to begin to heal a little. All I wanted was to enjoy life again. I knew Nessa would not want me to be crippled from this hurt for the rest of my life. She would want me to live and be happy with her Daddy, who I can safely say was her favorite. I had to find a way to live and keep going, despite my pain. When the tears come, I let them fall, but then I wipe them away and keep on living.

I would never want another parent to have to go through this pain. You learn to live with the pain. It never goes away. As time passes it gets a little easier but there are days that I just sob. Then I wipe my tears and keep on living.

I would like to say that I am healed but a part of my heart died when my baby girl passed away. It will never be the same again. My life and my world have forever been changed. This has been a very lonely walk for us as a couple. Someone who has not lost a child would never understand. Genessa was supposed to bury us, not the other way around. The loneliness is always there, even in a room full of people. She’ll always be missing from my life.

We created the Genessa J Santiago Foundation, a non-profit organization. Every year we honor two students from her high school alma mater with a scholarship to attend college. Our mission is to help students find their purpose in life and pursue it. It’s been almost eight years since our daughter passed away and we have been able to help sixteen students.

Through everything, I still believe and trust God. He knows why this has happened and maybe one day I will understand. I have peace in knowing that she is by His side. I often wonder if she knew how much I loved her, and how much she meant to me?  My hope will always be that I will see her again, to hold her and just tell her how much I love and missed her. It took me a long time to get to the place where I could tell my story. However, God has seen me through the entire process. If it was not for God, I know I would have lost my mind.

It’s important to me that Nessa’s death is not in vain. I have made it my mission to ensure her legacy continues to change lives and it is my responsibility to make sure that she is never forgotten.

Encouragement for Moms:

I would like to tell the parents out there that it’s OK to cry even 50 years down the line. This was your child and your love. The love you have will be greater each passing day. If you love your child now just imagine how much more if God calls them earlier. You will always be a parent. Talk about your child’s smile, keep the memory alive. Whatever that means for you. Cry as often as you need. You will never get over the death of your child, but you will live. You will make new memories but, in the midst, your beloved child will be there with you all the way.

I often wonder why God would allow other children to survive and not mine. I guess I will never know. One thing for sure I know without a shadow of a doubt I will see her again. That is my hope and what keeps me living.

I would like to make note not to forget about the fathers. They too are going through so much. Standing by your side making sure you are safe. Sometimes they get lost in the mix with so much going on but if we do not take care of the head of our homes then the home will eventually crumble.

Prayer for Moms:

Dear Lord,

I lift up all the parents out there that have lost their child/children. This is a pain that no parent should have to go through. Lord, please envelope them with your love. Let them know how much you love them and care for everything that they are going through. Let them know you are there with them through it all. Help them know they are not alone but have you to fall back on. I ask you this in Jesus’ name. Amen and Amen.

~Zayda Santiago

Want to learn more about Zayda? Watch our Moms Night In conversation on YouTube:

or watch on Facebook here:

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