White picket fences and Williams Syndrome.....

Nearly 2 decades ago my journey as a special needs mom began....and as I think of it this morning, and was immersed in it for the last couple of days, it has been another journey.....all its own....running simultaneously amid the rest of the stories of my life.....and I guess life is like that.....and when it began I was sure God had made a mistake.....when I became pregnant, all I wanted was a "healthy and normal" baby....whatever that meant right lol:) And the irony of that is not lost on me today.....it was this obsessive need to have this "white picket fence" life at the time....having been newly married, and wildly excited to start our family.....and I got pregnant easily.....and was so excited.....but it also caused me to worry....worry that something would be wrong with the baby.....or just so many things, lots of worrying, and I wonder about that now......like it was an intuitive foreshadowing that took hold of me....and then we found out he was growing behind schedule.....my not knowing he was a "he" at the time.....and they could not figure out why......and then I was told I would have a premature baby....hoping that that baby would stay incubating, until at least 32 weeks......the magical gestation number....and well he did....arriving that week....with the cord wrapped around his neck, an emergency......and from that moment on for a long time, life was a blur.....the intensity really hard to fully articulate.....I became a NICU mom.....my son arriving 2 pounds and 10 ounces.....and full of medical challenges......and in that moment my "white picket fence" life felt shattered, so completely.....I was fortunate that I got to live on the labor and delivery floor for free, while I waited for my baby to come home, but that came with its own heartache....having a front row seat to THAT life, the one I thought I desperately needed.....healthy babies, taking pictures with their happy families, while I walked past them to see my baby in an incubator, fighting for his life....and it was a dark and challenging time, I would be lying if I said otherwise.....I cried more in that part of my life, than perhaps the rest of it combined......my heart just aching so fully....however, what is often true with extreme darkness....the light gets in:) And the nurses there were magical and light filled.....and they became my lifeline to learn this new role I was stepping into....boot camp if you will.....and I made a wonderful friend named Cathy there too.....an angel sent to me, to show me the ropes, another NICU mom........and then we came home, and the terrain got even more challenging.....sleepless nights, literally.....he had extreme colic, due to the WS.....I was barely sleeping for the months that followed, well over a year, and going to a myriad of specialist's appointments on repeat, most of the time on my own.....and the darkness threatened to swallow me whole.....truly......feeling I had been placed on an island....away from the other mothers I had known.....them living their "white picket lives".....and me all by myself in this brave new world....and in the short term I felt like God had made a mistake....choosing for me to live such an intense and difficult version of motherhood.....and definitely early on, I felt "victimized," a feeling that I am not normally used to feeling.....but it was there, amid the intensity.....however in all of the suffering I was enduring, I was crazy about him.....he stole my heart from the jump, and I vowed that there were no lengths I wouldn't go to, to help him live the best life possible, and I have kept that promise:) And after the darkness I somehow got my sea legs.....I stood up....brushed myself off.....leaned into this special baby that I had been given.....stepping into my role as his advocate.....getting him early intervention, which led to his diagnosis....and by that time the relief of his diagnosis was everything.....I knew he had something, and giving that "something" a name, and giving me an opportunity to DO something about it was everything.....and a total game changer.....and I made a decision, all those years ago, when I was in the depths of that darkness, to fully embrace it....choosing not to mourn the loss of what my son wasn't going to get or be in this life as a result of WS.....but to celebrate all of what HE WILL......and it was in that decision, that moment, that shift, that my experience changed........like all of a sudden, ALL of the light poured in, suffocating the darkness.....and the darkness left.....just like it did after my divorce.....as the decision to chase the light takes hold......and I have never looked back.....never feeling like a victim again.....my son has been one of the biggest blessings in my life, no question.....a catalyst for deep, and profound, and transformational change.....and WS is this magical syndrome, that holds so many special places to bear witness to.....and having a front row seat to it....well:).....that feels like a great honor and gift, every single day......and thinking this morning, about my life and the places that my "hard" has shown up, it has been REALLY hard.....life shattering hard.....BUT......the magnificent light that follows those experiences, has been well worth the darkness I had to crawl through to get there......and as I sit here today, and feel so confident in being my boy's mom......certain God knew what he was doing, the experience feeling miraculous.....and having conquered taking him to Philadelphia this weekend, and doing all of that on my own, without batting an eye.....well it feels as if I have arrived......to a new level in this story.....and I do not believe we should spend tons of time looking back, but sometimes I think it is so valuable, to see how much of the road, we have left in the rearview mirror, and in this story.....that road is long and winding, and feels like such an accomplishment, and here we are:) Gratitude doesn't even begin to cover it! Happy Tuesday:) xoxo