Xoe’s Extra Love

They call it a "delay."
I’ve started calling it the scenic route.

​When we’re out and I see
other kids her age hitting
those markers with ease,
I find myself holding my breath.

I wonder if they see the gap between their
"normal" and her "extraordinary."

​But then I look at her.

She isn't worried about the clock.

She isn't measuring her worth in milestones.

She’s just... her.

​If the world looks at her and sees "behind,"
they’re missing the view.

She’s not late;
she’s just taking the path
with the best flowers. 🌸

Life Update 💕
Life has been a whirlwind lately. Back in May, Xoe had a scary episode that completely shook us. She slept until 5 PM, and when she finally woke up, she was groggy, her lips and fingers started turning blue, and she began shivering. Her oxygen levels and temperature were normal, and then—just as quickly as it started—it passed. But that moment left a pit in my stomach.

We brought it up to her pulmonologist, who ordered an overnight O2 study and referred us to a cardiologist. The overnight study showed her oxygen was dropping at night, so we were told she needed oxygen and a full sleep study. That revealed very mild sleep apnea, and we were sent down the CPAP path with a referral to ENT.

We got the equipment, started using it, and—true to form—Xoe handled it like a total rockstar. But when we saw the ENT, he felt her airway looked great and didn’t see a need for CPAP or oxygen at all. Now we’re back in limbo, waiting to hear from pulmonology, still trying to piece together what that strange and frightening episode was really about. We have a cardiology appointment in August to rule out pulmonary hypertension.

It’s been nerve-wracking and exhausting, and full of so many questions without answers. But through it all, Xoe has been her brave, sweet, shining self. We’re so proud of her. She continues to teach us what strength really looks like. 💗

Join me on TikTok. Lots of Xoe videos.

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Being a mom has consumed my identity, but I'm ready to unearth the person I used to be. I love my kiddos to bits, but I yearn for the day I can reclaim my pre-mom self. When Xoe was born, I thought, 'Goodbye freedom, hello permanent roommate!' But I'm learning to live in the moment and trust that Xoe will spread her wings... eventually. For now I try and enjoy every moment for I know it doesn’t last forever.

Having an extra chromosome may indicate a genetic disorder but it cannot indicate or define one's intellectual capabilities. We mustn't forget that children born with Down Syndrome are much like their peers and possess a wide variety of skills and talents.

Xoe had to go through an evaluation to start preschool and they evaluated her in 3 areas, gross motor, speech, and fine motor. Her strong area was her fine motor and surprisingly we have had very little therapy in that area. All kids no matter their diagnosis excell in different areas.

Crazy kinda sad fact. Less babies are being born with down syndrome due to the advancement of prenatal testing and the ability to terminate. I couldn’t imagine my life without my little girl.

I have been off track for Down syndrome facts. Xoe turned 3 and started preschool!

This mama is overwhelmed.

Fun little fact when I was pregnant with Jaxon blood tests showed a higher than normal (for my age) likelihood that he would have Down syndrome. But during our anatomy scan he had no markers at all. Sometimes I think that was a sign.

There are 3 different forms of Down Syndrome. Do you know what they are?

October is here! It is the first day of Down syndrome awareness month!

I guess I missed it… lol yesterday was Daughter’s day! I am absolutely blessed to have this little lady in my life. I wouldn’t change a thing.