Confessions As I Anticipate Grief: part 2


Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.

I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.

This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.

WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?

My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words. 


She said the organs will start to shut down. Circulation will go from his hands and feet. He will sleep 16 to 20 hours a day. His kidneys will start to fail. He will stop tolerating feeds. His body will stop absorbing the foods we give. We talked about cremation. We talked about organ donation. We would have to intubate him and keep him alive for them to remove anything donated. But they could harvest his eyes after he passes.


My sweet Jayden.

I just can’t talk about it.

Please don’t talk to me about it.


And all I can do is watch. And all I want to do is touch him. To stop living and just hold him. Consume him. But I can’t. I can’t stop laundry from accumulating. I can’t stop writing. I can’t stop my marriage. I can’t stop parenting. I can’t stop friendships. I can’t stop living.


I can’t stop living.


Ellie has to wear her water wings. “Why?” she asks.


“Because we don’t want you to drown. You can’t swim. You won’t be able to breathe if you go under,” I say.


“You mean like when Beeba stopped breathing and turned blue?”


“Yes, baby,” I said. “But Beeba had a seizure. And that was really scary. But she started to breathe on her own. If you drown, you may stop breathing, and die. And do you know what happens when you die?”


“You go to heaven.” Pause. “Mommy-I don’t want to die.”


“I know. I don’t want you to die either. But, we all die at some point. And heaven is a real place. Like here, but better. It is going to be wonderful.”


“I know, mama! When we go to heaven, Jayden and Brooklyn will be able to talk!!”


“Yes, baby. We will all be perfect. It will be great! God will have everything we need there. But you know what? We can be really happy for the person that is in heaven when they go, but we also can be really sad because we will miss them.”


“Ellie, I want to tell you something.” The time was right.

“You know how I said everyone is going to die? Well, it looks like your brother and sister may die before us.”

More silence.

“I don’t know when. No one does. But because their brains work differently, it may be before us.”


“Mama, I don’t want them to die.”


“I know. But we’re going to make a lot of memories as a family until then, okay?”


“Can I go swim now?”


“You bet. And Ellie? You can talk to me anytime you want about it, okay?”




I wanted her to hear it from me and no one else. It’s an ongoing conversation, really. As we talk about ballet, and dolls, what she wants to be when she grows up, and if she can have a popsicle from Ama, we talk about death. We want to create an open door for her to ask questions whenever she wants. It’s working. Knowing the truth about her brother and sister has created compassion, sadness, and love in her that is rare in anyone, let alone a four year old. It’s overwhelming to navigate – this beauty and pain. This progression of life with Ellie coexisting with regression in Jayden and Brooklyn. For Ellie though, it will be how it always was, just a part of life.




A few nights ago, I was tucking Jayden in and reading to him. Ellie joined. Out of the blue, as she spooned him she said, “Mama, I am going to miss Jayden when he dies.”




“Yeah, baby. Me too…me too.”


Part 1 and Part 3 available here.

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2 thoughts on “Confessions As I Anticipate Grief: part 2

  1. Stephanie, This is beautiful. Real. Heartbreaking and full of Hope. I needed this today. Very different circumstances, but the grief process transcends. Know that I pray for you guys even though I don’t know you as I know other members of your family from Beach Bible. It is beautiful to see you walk the journey in transparency and truth. I mourn with you and hope with you as you watch the journey unfold. Know that you are being upheld and that you are making a difference in a beautiful way. Thank you for boldly sharing these very real moments. Blessings to you.


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