July 8, 2019 was one of the happiest and proudest days of my life. I had completed my first surrogacy, and it was a match made in heaven. My pregnancy was perfect and the intended mother (IM) and I had formed a beautiful friendship. Our children knew each other and loved each other. 

My 7-year-old had been complaining of knee and leg pain and we had been pursuing it and trying to figure out what was wrong.

Just six days, after giving birth, we took our son to the ER and our 6-day nightmare began. 

Our son was diagnosed with a nine-inch tumor in his femur, a flap on his mitral valve which resulted in six strokes. In that time, we were being fire-hosed with information from eight teams of doctors. We could not comprehend all that was happening.

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We also had a 3-year-old son at home who needed some normalcy, so my husband and I traded off nights at home so at least one of us could get some sleep and our other son had a bit of security. 

At 3 a.m. Saturday morning, we were told there was nothing else they could do to help him.

You could hear my screams from the other side of the PICU.

We called our family in, and we had to say our goodbyes. They let me lie with my boy for four hoursI stared at him, memorizing his profile, not truly realizing I would never see his face again. Nothing will ever be worse than that day. My heart split in twohalf is still living for my younger son, and the other half barely still beats after losing our 7-year-old

Parenting a needy, sad, confused, anxious boy while profoundly grieving myself feels impossible most days. There is no handbook on what is normal after losing a child because nothing fees normal anymore.

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Thank goodness for play therapy because it has helped our now 4-year-old learn to live with the loss of his big brother and his idol.

It’s also given me hope that maybe I can get through this. 

During the pandemic, I created a foundation called Love Like Jackson, and we provide funding for art, music, and play therapy for kids whose siblings have died. Siblings are often called “forgotten grievers.” This foundation honors both of my boys, and I have learned since my son’s death, that while helping others can’t bring him back, it does take the sting away a little bit. And I will do anything to lessen the pain of losing my precious firstborn son. 

Carrie Schmitt

Carrie Schmitt is an advocate for St. Baldricks and sibling loss. She has created a foundation called Love Like Jackson which funds art, music, and play therapy for children whose siblings have died. She is the mother of two boys, one in heaven and one on earth.