Friday, February 20, 2009

Me, Myself, & I

For a long while I have been meaning to change the premise of my blog a little. The truth is very often I write about what I see and experience. Most of which includes Sam and of course, and some of which does not. My entries will pretty much be the same... I will still keep postings of the goings on of Sam with pictures and all that fun stuff. I just felt it unfair to keep the title Sam's world when my ego centrism kept getting in the way... Oh well you all know how that goes.

I chose the title In Through The Outdoor as a reference of the constant struggle I deal with on a daily basis. Its the struggle of keeping Sam alive (literally), giving him the best chance life has to offer, organizing and delegating responsibility to about 20 different people on any given day, marriage, and of course trying to keep my sense of self alive all the while trying to continue to find joy, happiness and comfort out of life.

So Livingston It Is...

Scott and I have been trying to figure out where to move for at least 2 years now. NY is great for children that need early intervention but I prefer the schools in NJ for the later years. Actually NJ was not the only place we were considering. We considered doing a huge lifestyle change which would have involved us moving to Florida, North Carolina, possibly Colorado???? We also have racked our brains trying to figure out where in NJ to live if it was going to be NJ. It was a tough decision because we had to consider soooo many things such as commute for Scott, school district, special needs funding within the school district, type of home ranch vs. 2 story with an elevator option, affordability... So we finally found this new townhouse development with an elevator option and an open floor plan that was within our price range and a close enough commute for Scott plus the town has excellent services for children with special needs. So Livingston it is...

Tuesday, February 17, 2009


Anyone out there ever hear of Jibjab... Anyway if you haven't I suggest checking it out. They are more well known for their political stuff. The creators of Jibjab are 2 brothers that went to my highschool and I even dated one of them for like 5 minutes... I have been sending all my e-cards through this website and its hysterical. Its also great if you want to embarrass your nearest and dearest on line... Sorry honey... You know how I love to drive you crazy...

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Tuesday, February 10, 2009

At Peace and Humility

Yesterday we took Sam for a full speech-language and swallowing evaluation at Columbia University's speech and language clinic. The evaluation was partially conducted by student clinicians and partially conducted and supervised by Dr. Justine Joan Sheppard (the Sigmund Freud of pediatric feeding and swallowing). When I go back to school for my PhD it has to be at Columbia. What an amazing program.

During this evaluation, as with any evaluation for my son, certain realities set in about all the challenges and limitations Sam has to face and that we will have to face for the rest of our lives. Will he eat, will he talk, can he learn, will he get stronger, am I going to have to change his pamper until the day I die etc... Of course I will always remain hopeful that Sam will exceed every expectation imaginable but there is of course the possibility that he may not. In the past I've always left these evaluations feeling empty, sad, anxious, defeated, pretty much sick to my stomach and unable to get through the day without telling someone, anyone to fuck off. But yesterday... yesterday was different.

Yesterday I left the evaluation feeling calm, happy, peaceful, hungry ;), and like I really learned something... I felt smarter. Not only about more strategies and things we can do to help Sam, but things about myself and our "situation". I was able to stay in the moment and not project. I was really able to enjoy sharing our experience with the students and Dr. Sheppard and at the same time enjoy what I was learning about my son regardless of strength or weakness. It was an empowering experience which I have found that I am having more often these days. You see, when you've spent years in constant anguish about the fate of your child it starts to poison your soul. But once you choose to be in a better place you start appreciating and really loving every experience whether good or bad. Of course this is not easy and I am no more special than anyone else. We can all do this you know you just have to choose to.

Something about humility that we can all learn from... I think, no I know... that the positive feelings I felt when leaving the clinic had a lot to do with the energy that surrounded Sam and myself. There was a definitive air of humility from our SLP, Genie, that accompanied us to the eval, from the students and most of all from Dr. Sheppard. In my travels as an SLP I've noticed way too much pretension and arrogance on the part of colleagues, doctors, therapists, nurses, etc... All through my own judgement had NOTHING to be snotty about. But now here I am with THE pediatric feeding and swallowing guru and she was so grateful as were the students of our presence with them for the two hours we were there. Not only did they thank us numerous times for being there but you truly felt the sincerity behind their words. I think it is safe to say that we all learned an enormous amount from Sam. Which leads me back to the peace part...

In my coming peace there is acceptance. Its the acceptance of feeling and believing that I was chosen or maybe I chose to care for Sam who is this being of greatness with great challenges. I have come to accept and be grateful for all that I have learned and will continue to learn from Sam so that we can selflessly help others with only the best intentions. Although this thought process comes with great struggle I have felt it and hope that even in the darkest of times I am able to believe, truly believe that there is a purpose for all of the challenges we face and that there is a happy ending in sight.

Friday, February 6, 2009

Twinkle, Twinkle...

I am finally catching up with all of our videos.
This is from Oct. 2008