08/28/2026
Many of you know us and our “why”. But there’s lots that probably don’t.
Here is where our story with special needs started.
12 years ago I sat in a large, white steril room while a doctor told us the child I was carrying was likely incompatible with life.
That even if she survived delivery, that she would have no quality of life.
In those 12 years I’ve learned so many lessons. I routinely experience just about every emotion possible.
I’ve given my daughter to surgeons 4 times, 3 of those were for brain surgery.
I’ve cried many tears.
I’ve slept in ERs.
I’ve collectively spent months of my time in hospitals.
I stand watch over the crib of my 11 year old and watch the monitor during illness like a hawk
I sit in lengthy IEPs, appointments and therapies
I’m in constant contact with someone from her care team; DME, insurance or pharmacy almost daily
I monitor for seizures and administer medication daily
I’ve held down my screaming, sick, exhausted little girl for blood draws and IVs that seem impossible to get for even the most qualified tech or nurse
And in those 12 years of all she’s been through, we’ve done it all together.
Because my child that was incompatible with life? She lives a very big life every day. As witnessed by everyone who sees her at school or in public.
She is our sunshine girl and a closet mean girl.
She loves friends and music and sitting outside; she loves food and Sesame Street, Grinch and Bluey. She loves to be tipped upside down and twirled around.
She thinks every ’Happy Birthday’ sung and every round of applause is for her.
There are days I feel so unequipped to be her mom and there have been many hard days.
But the joy this girl brings is limitless.
I’m so lucky she is mine and so thankful I am hers 🩷
This week I was reminded just how unfair our kids’ lives are. Just how short they can be cut.
They deserve to live their very best quality of life while they’re here with us. And we will do all we can to be sure that our sunshine girl and others like her get access to everything they need to live full, happy lives. 🩷🩵💚☀️
