Walking through Williams Syndrome

Years ago I wrote my first article that got published in the Huffington Post, and it was titled "Walking through Williams Syndrome," and my writing nerd was so pleased, but more importantly it showed me the power of expressing my inner world through written expression, and I was hooked.....it would be a long time before I started this blog and began writing my book but it was the beginning perhaps.....and truthfully I thought I might write a book one day about being a mom to my WS kiddo.....and I still just might:) But then the rest took over and well here we are.....But just has life changing as I feel the last 7 plus years of my journey have been, being Gabe's mom has been equally so.....having Gabe changed my entire life, in all of the ways......in ways that continue to shape our lives.....May is WS Awareness month......and it is not lost on me that it is also my birthday month, and Mother's Day......having his presence run through the fabric of it all......I got pregnant shortly after I got married, and was overjoyed.....and my pregnancy became problematic and troubling in ways that nobody could quite get to the bottom of........I had something called IUGR- Intrauterine Growth Restriction, and I didn't have any of the health or lifestyle circumstances that normally caused it.....so nobody could get to the bottom of it.....however one of the causes is a genetic abnormality with the baby.....however having scan after scan that theory came up empty......and then he came......emergency c-section.....at 32 weeks gestation weighing 2lbs 10 ounces......the cord wrapped around his neck.....his being saved by an appointment that almost got cancelled due to inclement weather.....the divine at work indeed.......and I was thrown into a tsunami of motherhood......it was a dark time initially....spending time in the NICU with my heart ripping apart as I watched my sweet baby boy fight for his life.....all of the anxiety and uncertainty, and I was a new mom! It all felt like too much....endless specialist appointments, sleepless nights, severe colic, and feeding issues and the list goes on....and that was one of the other times in my life that almost broke me....truly.....but what was true from the beginning was my fierce love of my special boy, and knowing with such certainty that there was nothing I wasn't willing to do to help him not only survive but thrive, and so amid my heartache I got to work......early intervention, research......specialists.....whatever was needed, and then this little happy smiley guy appeared.....offering love that felt like the ocean, just stretching out with no end......and all of those early days became worth it.....ALL of them......and being his mom is not easy.....it requires a lot of me......and he still needs me in lots of ways that other 19 years olds don't need their moms.....and now that I am on my own that is even more true.....BUT......the gifts I receive as his mom are endless.....ENDLESS......being loved by him is second to none.....he loves with every bit of himself.....and shines a light so brightly wherever he goes that people are drawn in, sometimes in spite of themselves.......EVERYBODY loves Gabe.....and it is easy....he is a living breathing beacon of love and light........and while this journey initially challenged me in EVERY way, it has been the most incredible journey......his sister shares my sentiment about her brother and adores him, and their relationship brings tears to my eyes....they are each other's fiercest supporters, and they enjoy each other's company so.....our party of 3 just makes sense amid the madness we have traveled through to get here.......and while WS is rare, it is not to us, it is our normal......our best guy teaching us what it means to live.....and love....and raising the bar on what it means to be human in this world......and it is not a path I would have chosen for myself before I knew better, but it most definitely is one that I needed and has been a gift to my life:)