Being a mom to other kids when you have a medically fragile baby

When I found out about my daughter’s condition, one of my immediate thoughts was, how will I tell Theo? My oldest. How could I tell him that his sister who I was pregnant with would die? We planned to keep the pregnancy even if she died after birth so I would continue to grow and be pregnant for months still. How much would we confuse my older children with this news? My husband and I finally came up with the plan that we would tell my son that we were growing Lily for Jesus. She was in my tummy and Jesus would take her after she was born.

The next day, we went to a doctor who gave us hope about Lily’s prognosis so we decided to tell our children that Lily would be born really sick and need to be with the doctor for a long time. I was scared for their reaction until Theo said, “Like Early Baby!” I will always be thankful for Bluey because I didn’t have to explain this extremely challenging situation to my son. He already understood because of a Bluey episode about a premature baby. That night, he started to pray for Lily to not be an early baby and for momma to be the bravest she’s ever been. 

While I was pregnant, I thought a lot about how hard it was to have two older kids and go through the hell I was living. But really, those two kids made me get up in the morning. I couldn’t fall into a pit because they needed me. I needed them. I tried my hardest those 15 weeks of pregnancy to make their lives joyful even with the pain. Theo and Catherine kept me afloat when I could have easily lost all hope. 

Then Lily was born. I had to be away from my beautiful children for four and a half months. My husband had to be a single dad during the week before I got to see them Friday, Saturday, and Sunday. We FaceTimed every night. I showed them their sister but they never got to meet her because of cold and flu regulations in the ICN. Our whole family had to be the bravest we’ve ever been. 

There were days when doctors or nurses told me that I needed to go back to Fresno more to be with my other children. They told me that my older kids would remember me being gone and Lily wouldn’t. It felt like a low blow. I thought Theo and Catherine every second of the day. Just because I couldn’t physically be with them didn’t mean that I wasn’t still ordering their groceries and planning how to make Christmas magical at Family House for them. I felt guilty for missing the time with them but I knew that my three days a week with them was all I could do while I took care of their sister. 

Even now that we are home, I don’t get all the time with my older two that I would like. Lily requires a lot of attention. I am only one person. Sometimes the guilt eats me alive as a mom. How can I be better for all three of them? But the moments that make it all come together are when Theo asks Lily, “Who’s got you smiling like that?” Or Catherine says, “That’s my baby sister.” 

All the sacrifices I have made to bring their sister home were worth it. They wouldn’t trade their sister for the extra time with me. They won’t actually remember the four and a half months when I was away as anything more than the time they got to live in San Francisco while their sister got better. 

I wish I could be in two places at once but the reality is that I can’t. All I can do is my best and that’s what I’m doing for all three of my children. I know that they know just how loved they are and that has to be enough.

Lillian (Lily) Daniel

Sanger, CA

Transplant Type: Kidney

Transplant Status: Waiting for Transplant

Goal: $50,000.00

Raised: $4,023 of $50,000 goal

Raised by 38 contributors

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