With how openly I share now, you may be surprised to learn that I haven’t always been so open about what’s going on with Soraya’s health.

That’s when I realized – parenting norms don’t apply to me. There’s nothing “normal” about our life and nothing “normal” or typical about the choices we make.

Dance recitals are extra emotional for me. It may be because watching 3yr olds to 18yr olds dance feels like a visualization of life and growth. It brings up such a mix of grief and gratitude – grief that Soraya will never have that and I miss it for her, and gratitude for how absolutely AMAZING it is that I get to watch Leena dance.

We are one week past a pain med increase and it’s evident that things are progressing. Whether it was a quick visit to Ulta or just visiting with friends this weekend, Soraya was flared up and behind her pain curve and it was BRUTAL.

What I am realizing from my trip to Chicago with Leena is that she craves normalcy. She doesn’t necessarily want extravagant trips or experiences; she wants to do “regular” things, like eating homemade waffles made by my friends and playing barefoot in the sprinklers.

ALL of us have had howling, breath-stealing cries randomly throughout the week.

I immediately noticed how warm and welcoming everyone was. I told Yasmeen, “I think I found where I belong.”

She told me, “I’m afraid of dying sooner. I don’t want to leave you. I don’t want to leave Daddy. There are days when I just don’t feel like I belong, but I still want to be here with you. My body hates me. It’s getting more tired, but I want to be here.”

Leena has been struggling with friendships lately. She feels isolated and as if no one understands the hardship she’s going through.

We laid in bed and Soraya began telling me all her worries. She said, “Mom, I am afraid of dying sooner. Do you think I have a choice?”

Ultimately, the gala ended up taking on a greater meaning than any of us could’ve expected.

While we are HYPED for tomorrow’s Make-A-Wish Gala, we also had to work through some tough things this week.

The gala is this Saturday (April 13th), which also happens to be the day before Soraya’s 12th birthday. All Soraya wants for her birthday is a formal party, and we are DELIVERING 🙌🏾

So much has changed for our family in the last week. It’s a lot to take in, and each of us is processing differently.

I know it’s common to struggle with getting back into the swing of daily life after being on vacation, but WOW have these last few days been difficult.

Planning/packing for a trip when you have a medically complex child is a LOT. I need a nap just thinking about it.

I'm beginning to realize that there’s NO escape from the sadness and grief that can come at any time.

Our palliative care physician’s advice on planning when in hospice? Plan for the best-case scenario, and the worst-case scenario, and keep living each day.

It’s so hard to not have a diagnosis. Rare Disease Day is a day that we at least can be a part of. We can take a day and have a moment to bring awareness to other families that are like us ❤️

Last February, I really felt like I was drowning in my sadness and grief with no space to share, feel, or guide how to navigate my life with Soraya in hospice. I had asked Soraya’s medical team for resources on living with anticipatory grief, and they didn’t have ANYTHING to share with me.