GRATEFUL for today...and every day. Learning patience 1.5 years at a time.
I've been back to read my last post a few times over the last couple of years...and vowed to update it with all of the amazing things going on with Kennedy. But life got busy, things got crazy and last and best: Kennedy beat all odds that were originally lined out by her doctors (who, by the way, are still her wonderful doctors with wonderful things to say--but more on that on another post).
Only three months after my last post (almost to the day) I witnessed Kennedy chase after a toy that she *SPOTTED* (yes, with her eyeballs...or, more specifically her brain through her eyeballs) on our ottoman. At that point we had started on our mission to find the best damn Pediatric Chiari Decompression surgeon (more on that later) in the country, and things went even crazier in a crazy time after that. Since then, Kennedy has learned to walk with a cane, started school, learned letters and numbers (in English and Spanish) and can read (from memory) "Oh, the Places You'll Go" in addition to reciting all of Moana, Frozen I and Frozen II (we're working on Tangled). She has the most kickass teachers, therapists, and support system a little girl and her parents could ever imagine. We FINALLY found the most phenomenal nanny in the history of creation, and Kennedy's sight is almost as good as any "regular" limited-vision kid...dare I venture to say with about 60-80% acuity? (this is a loaded answer, with tons of qualifiers, but just for those who need a solid answer instead of the annoying, typical "it depends" answer from a lawyer).
She's also been through a lot. Greg and I split. She underwent highly invasive Chiari Decompression surgery that removed all of her cerebral tonsils, lamina of C-2 and piece of her skull. COVID-19 has rocked this entire world.
But through everything she continues to be the HAPPIEST, most musical, bubbly, loving and cuddly little Bubsling in the UNIVERSE. She loves Whitney Houston, her Momma, Dad, Nanny, Aunt Teresa, Uncle Travis, Uncle Nick and allll of her extended family and friends that love to sing and dance with her. She loves baby yoga. She loves doctor Seuss and READING (praise the Lord! she gets this from me!) and still will climb all over anything she can.
I feel bad for not keeping up with this blog. If I've learned anything the last few years it is to document the positive--there is enough negative out there. And if my family--whom I cherish above all else--is a sign of anything, it is of positivity, love and happiness. Even those of mine who are fighting the hardest fight ever--my cousin with stage four cancer--are the brightest, most strong, positive and "mas fuerte" I've ever seen. I love them and their parents more than words can say, and am POSITIVE that our family's prayers--the same ones that got Kennedy where she is today, thank you to, immensely, her super prayer warriors her Great Aunt Trish and Great Uncle Gary--will get my cousins Brian and Jerimi back in each others' arms. With hope and prayer-warriors, miracles aren't possible--but, IMHO, probable.
It took us a year and a half of praying daily until God gave K the ability to see (in the humanly sense)...which is nothing in the grand scheme of things. The impact she has had on anyone that has met her is astounding. The impact her support system has had on her and us is beyond WORDS. I thank God hundreds of times a day for what he has shown us, and for the amazing people in our lives. I'm humbled by the love we have received and the gifts we have received through His love and grace. I'm excited for the future, and for the ongoing healing of everyone that is open to it.
And really, truly, BEYOND fucking excited to witness these ongoing and forthcoming miracles.
