104 Weeks, 730 Days, 2 Years

While most people would think commemorating a date usually only happens for happy things, sometimes major events that have a cosmic shift on the entire direction of your life tend to get perma-etched in your brain.  104 weeks or 730 days or 2 years ago today, I got news from Will’s neuro that was a weird blend of emotion all in one sentence.  Honestly, at this exact time I had no idea anything would change that day.  The call would come in as I drove home after 5:00.  It would blindside me so much that I truly don’t know how I got home that day.  See, prior to this day, I had gotten word that the test for Angelman Syndrome, as well as the half dozen other tests Will’s gastro allowed me to request, had come back normal.  I also don’t usually answer numbers I don’t know or aren’t programmed in my phone.  I recognized this number as Cleveland Clinic and just answered it.

In 104 weeks, 730 days, 2 years I have seen the amazing size of people, I have lost people I never imagined I would.  Will is insta-asshole repellent.  In my life 731 days ago, it was my weakness to give someone who didn’t deserve it, a million chances.  Will has demonstrated we only have room in this life for people who are on our team.  If a person isn’t on our team, they are our opponent and they have to go.  Seems harsh but it works so far.

The Will of today vs the Will I thought he’d be today truly never ceases to amaze me.  He is walking independently with more agility than any of us expected at his young age.  He starts preschool in just under two weeks.  He is trying his damndest to talk and is devising his own little language.  He, to date, still has not had seizures that were able to be registered in any way.  Through a joint effort of his entire medical team and those who love him, he is growing, thriving, beautifullly happy and deliciously toddler ornery.  He is still about a year and a half behind developmentally and is starting to exhibit typical non-verbal behaviors to convey his frustration or unhappiness with us (we call him Zombie Baby – if your arm is there and you move him without him wanting you to – look out).  I am working on that.

To all of you who have stayed on our team in this journey thus far, and who I have no doubt will remain there for the long haul – we all thank you.  For lifting us up when we needed it, for backing off when we needed it and for offering a piece of happiness at times we needed it.  To the medical staff who saw I wasn’t just a paranoid, over-Googled mother, I can’t ever thank you enough.  Seriously.  Dr Lori Mahajan, Dr. Laura Milgram, Dr. Wadie Shabab, Dr. Marc Guay – you listened, you observed, you held my hand when I cried for my son and you support us still.  I owe you a debt of gratitude.  To the doctors and current med students who chalked up my typical appearing child to me being neurotic and overbearing – let this be a lesson.  Mom.  Knows.  Maybe you meet a crazy woman who is exhibiting munchaussen by proxy on a one in a million basis, but trust that majority of moms know when something is wrong with their child.  Your diagnosis lies in her story, just listen.  Please.  Fourteen months of battling normal human beings who tested into letter behind their name.  I pulled med records and it sickened me how many of the notes were more about my questionable behavior when I got mad they wouldn’t listen or noted how happy he was, when I begged them to please look past that, if I cried or raised my voice, then they did my son.  One day in this life, I will reach out to those doctors.  To the COUNTLESS nurses who walked the floor with me, who cried with me, who held my hand, who held my screaming sick baby so i could pee or get a coffee – there is no way I could adequately thank you.  You are the true driving force in every medical setting.

For the second year in a row, this day is proving weepy so I will end here.  To my boy.  My sweet, beautiful, amazing, trend setting, prognosis breaking, spunky, smart little boy.  There isn’t possibly a mama who loves her boy more.  There couldn’t be, I know this because I feel daily as though my heart could burst.  You hug me now, you kiss me like crazy – you are truly the piece of my life I was missing and couldn’t put my finger on.  I hope you always feel my love, my support, my belief in all you do.  I will always go to bat for you, take a bullet for you – you are the light in my life, your sister and you the reason I keep on every day.  I’d never make it without you, Lord knows I’d surely self-destruct.

Here is to the next 104 weeks, 730 days, 2 years – and the rest of our lives.  I know you will surpass everything we were told, what all the “statistics” say.  You call me by name now “mamamamamamama” all day long – but I still live for the day you put your arms around my neck and say “I love you too Mommy.”