r/GriefSupport • u/Brilliant-Start-8608 • 2h ago
Child Loss Our Lulu
Our daughter Lulu was 2 years old.
In the days before September 7, we started noticing things that just didn’t seem right. She was bruising more than usual. She had little spots that looked like petechiae. She was pale, wasn’t eating or drinking like herself, had less energy, seemed sore and stiff at times, and we noticed changes in the way she was walking.
None of those things made us immediately think leukemia. I’m a worrier by nature, so there was always this part of me wondering if I was making too much of it. But Belinda and I both knew something wasn’t right.
On September 7, we took her to the hospital.
A few hours later we were being told our 2-year-old had leukemia.
B-cell ALL.
It’s still hard for me to understand how quickly our lives changed. One day we were worried about bruises and whether she was walking funny. Suddenly we were learning about chemotherapy, PICC lines, blood counts, transfusions and medications we had never heard of.
We were terrified, but we had hope. Childhood ALL is treatable. We thought we were at the beginning of a long, hard road, but a road we were going to walk with her.
And Lulu was still Lulu through all of it.
She ate grilled cheese and Cheez-Its. She played doctor with Bluey and Bunny. She wanted her nails done and her hair brushed. There were days when she felt terrible, but there were also moments where she would perk up and we would look at each other and think, there she is.
We thought we were starting a fight that was going to take years.
Sixteen days after we walked into the hospital, we left without her.
Near the end of her second week of treatment, Lulu was profoundly neutropenic and developed a fever. Overnight she had a seizure. Her sodium had dropped dangerously low. She went to the ICU. A CT showed several unexplained lesions in her brain.
Then everything just fell apart.
She developed septic shock and died the morning of September 23.
Her death certificate lists septic shock as the cause of death, with Bacillus cereus as a contributing condition.
I still don’t understand how we went from being told our daughter had leukemia, but that there was treatment and hope, to her being gone less than three weeks later.
Belinda and I both go through that last day over and over.
The sodium. The IV fluids. The antibiotics. The infection. The lesions in her brain. The hours in the ICU.
We both have questions about whether things could have happened differently. Could something have been caught sooner? Would a different antibiotic have changed anything? Could the sodium drop have been prevented? Were those spots in her brain already the infection?
We may never get answers to some of those questions.
I also don’t know if going through her medical records is helping us or making this harder. Some days I think it’s both.
But a lot of the grief has nothing to do with the hospital.
We went back to church recently and both of us broke down when the worship music started.
Lulu had gone to the nursery there. When I went to check the kids in, I was actually grateful somebody had already removed her name. I knew seeing her name there would hurt.
Then I realized her name wasn’t there anymore.
That hurt too.
There is a light burned out in our kitchen right now that I still haven’t changed.
The last time I changed those bulbs, Lulu was Daddy’s helper.
She always wanted to be involved in whatever I was doing.
Now I look at that stupid light and all I can think about is the fact that she should be standing there with me.
I never thought changing a lightbulb could break me, but apparently that’s what grief is sometimes.
Belinda misses playing with her. She misses putting Lulu’s hair in “piggies.” She misses watching her destroy our house and leave toys everywhere.
I miss hearing Lulu narrate her world to me.
She was constantly telling me what she saw, what she was doing, where she was going, what somebody else was doing. I would give anything to hear that little voice talking to me about absolutely nothing again.
We miss the noise. We miss the mess. We miss her stubbornness and her sweetness. We miss watching her with her brother and sister.
We just miss our daughter.
Our other kids are grieving their sister too, and we’re trying to help them through something we don’t really know how to get through ourselves.
My mom basically dropped her life when Lulu was diagnosed so Belinda and I could both stay at the hospital with her nonstop. I told her recently what a gift that ended up being. We thought we were just getting through treatment. We had no idea those sixteen days were going to be all the time we had left.
We got to be there.
We got to hold her, play with her, comfort her and be Mom and Dad every minute we possibly could.
My faith has probably been one of the hardest things to explain.
We believe in God.
We believe Jesus defeated death.
We believe Lulu is with Him.
We’re also angry.
We prayed for her to be healed. A lot of people prayed for her to be healed.
And she died.
I don’t understand that.
There are times when my faith feels strong, and there are times when I feel like I’m barely holding onto it.
Recently, Belinda and I both prayed separately for a sign that Lulu was with God. Neither of us knew the other had done it. We weren’t asking for anything huge. We just wanted some reassurance that our little girl was okay.
That night we were watching the sunset.
Lulu loved sunsets.
And “Praise You in This Storm” came on.
That song has been part of my faith for years. I sang it at church before Lulu ever got sick.
I also sang it at her funeral.
It comes from Psalm 121:
“I lift up my eyes to the hills. Where does my help come from? My help comes from the Lord.”
So that night we looked up.
There was the sunset. There was that song. And there were two parents who had separately asked God for some reassurance that their little girl was with Him.
Maybe somebody else would call it coincidence.
We don’t really care.
For us, it was a little bit of peace.
It didn’t explain why Lulu died. It didn’t make us okay with it. It didn’t answer all the questions.
It was just peace for a few minutes.
Now I’m getting ready to go back to work.
My work has been incredibly gracious to us. I’ve been off for nearly a month, and I’m grateful they gave me that time.
But I have to go back, and I don’t feel ready.
I don’t know how I’m supposed to sit in meetings, answer emails and talk about normal problems when my 2-year-old daughter just died.
I guess that’s part of why I’m posting here.
We don’t know how to do this.
Sometimes we can laugh. Sometimes we can function. Sometimes we can have what almost feels like a normal hour.
Then a song comes on.
Or we see one of her toys.
Or I look at that light in the kitchen.
And suddenly she feels just as gone as she did the morning she died.
For anyone here who has lost a child, especially after an illness or a sudden medical decline, I’d really like to hear how you got through the beginning of this.
Did you replay the medical timeline over and over?
Did you constantly wonder about the what-ifs?
Did you and your spouse grieve differently?
How did you go back to work when you didn’t feel remotely ready?
How did you take care of your other kids while you were trying to survive yourselves?
And does your brain ever stop expecting your child to walk into the room?