Two seemingly opposite things can be true at the same time.
A situation can be incredibly difficult, devastating even, but also a beautiful blessing.
I can grieve a life I once imagined that will never be while also being incredibly thankful for the life I get to live every day.
I wouldn’t have picked this desert road. But this journey has allowed me to meet some of the best people I know.
It has taught the girls they can do hard things and overcome any obstacle, including their own fears.
In our pain, I have found purpose.
There is beauty from ashes.
There is friendship. There is love. There is hope.
Every. Single. Day.
That’s not to say I recognize that beauty every day, but it is there.
It’s in the resilience of my children.
It’s the words of encouragement we receive on clinical trial and medical appointment days.
It’s the prayers lifting me up when it all feels like too much.
It’s the people showing up for bowling fundraisers year after year.
It’s the donations and support we receive from neighbors across the street and family members and friends across the country.
It’s the moms, family members and friends who go out of their way to make sure my kids have something safe to eat at a birthday party and other events so they feel included.
It’s the teachers fighting to make sure our girls have the tools to succeed.
It’s the opportunity to reach out and comfort a mom in the pit of despair after hearing the word galactosemia for the first time.
It’s being able to offer a little bit of light, or just sit with them in their grief so they don’t feel completely alone.
No, I wouldn’t have chosen the rare disease life. Yet, if given the chance, I would pick my kids again, just as they are – every single time.
I have no idea what the future holds. I hope it includes a medical breakthrough, an approved treatment that makes the journey a little easier. And maybe even someday, a cure.
For now, we will continue to walk this road. We will find purpose in the pain and make beauty from ashes.
We will continue to advocate, educate and fundraise. We will continue to lift others up. And we will not lose hope.
We are rare. We are strong. And even when we aren’t, we have a community to lean on.
This is rare disease. This is Galactosemia.