Donate Through Rachel’s 3/21 Pledge Page Here – for Sully Drake Family & Friends Scholarship!
You never forget the day you give birth to your child. I remember general details about having my son (he’s a handsome, hilarious 46’er) but I think I could tell you about every second of the day after having my daughter, Sully. Sully surprised us ALL at birth with Down syndrome.
It’s been quite a journey. An incredible journey. I had Sully at our local rural hospital and when she came out there was no denying our sweet girl had an extra chromosome. Sully had some difficulty breathing and she was quickly transferred to a higher level of care at Texas Children’s Hospital where we spent the next 102 days fighting for her life. We jokingly refer to our time at TCH as our vacation. Not your fun relaxing kind of vacation but more like the kind where someone drops you off in the wilderness and says you’ll figure it out, good luck.
We did figure it out. Took a few weeks but we soon became hospital experts and quickly felt like we had actually been to medical school. You needed directions? We were your people. Not sure where to eat? We got you. Where’s the cleanest one-holer bathroom? Floor 4 down the hall from the NICU check in desk. It was a vacation that provided a lifetime of memories, good and bad. If you’ve spent any amount of time in a hospital you know there is an insane amount of time for your thoughts to consume your soul.
We didn’t know the first thing about Down syndrome, and while my husband has coached Special Olympics for 15 years, we didn’t know know things about DS – I’d say we knew of it. So while Sully’s tiny body was hooked to monitors and IVs in her isolette, I Googled Down syndrome on my phone and read everything I could get my hands on. Some articles would just suck the life out of me and I would be overcome with grief at what they said life would be like for Sully.
But I kept Googling and one day I stumbled across Ruby’s Rainbow. While cheesy to say, it was like the clouds parted and a ray of sunshine was shining directly on me and Sully in that dark, quiet NICU. I still remember that day and telling my husband what I had found. To find a mom who was helping adults with Down syndrome go to college – COLLEGE – was the most hope I had had since Sully was born. While Liz doesn’t know she had such an impact on me, I am forever grateful to her for showing me my daughter was worthy of everything.
EVERY. THING.
So it was a no-brainer that we wanted to help Ruby’s Rainbow. We are not wealthy people, but our tribe is strong, and with them we have been able to raise funds and provide scholarships to three beautiful, intelligent women with Down syndrome. We hope to keep it going for many many years!