{( A DAY IN THE LIFE )}
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Sunday, July 15, 2018
By KARMAPANTS
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{( A DAY IN THE LIFE )}

SAFE HANDS . VACUUM OBSESSION . PINOT GRIGIO

Dear Tracey....Thank you for letting me into a very little, intimate look at your life. After photographing your wedding, your pregnancy, your newborn and now your family I feel that we have a very special bond that transcends friendship. I am honored to have been entrusted to document your family in this very personal way. Day in the Life Shoots are not about perfection, posing or props but rather a behind the scenes look at your family, whomever that may be. Our approach is a fly on the wall...well a fly that occasionally grabs a glass of Pinot ...ya know, just to blend in to the scene. We are there to tell YOUR story. The good, the fabulous, the ugly, the emotional. We want to show it all. If you are brave enough and see the beauty and value in something like this. Please do not hesitate to reach out, tell us your story and we will come and submerge ourselves in your life.

I have decided to let Tracey tell the story of how we met and the story of her amazing family. I urge you to take the time to read this.


In her words:


Nick was born in 2001 & he instantly owned my heart. He came a few weeks early but, was perfectly healthy in every way. His dad & I started noticing some subtle changes in him when he was about 6 ninths old & by the time Nick was about 18 months old, his dad & I were pretty sure he had autism. By age 2, he was officially diagnosed.
It didn't take long at all to look past the initially scary label of autism. Nick was always such an incredible little boy. He was full of smiles, happiness, and sweetness. He loved to draw & soon it was clear that he had an amazing talent for art. He was rarely upset about anything & happy with the simplest of things. We had our challenges with him but, mostly, he was just such an "easy" kid. I always felt like the luckiest mom on earth.


Fast forward several beautiful years...


Nick's brother, Julian, was born in February 2014. Nick was 12 at the time & surprised us all with how well he immediately did in his big brother role. He loved Jules right away & helped keep him safe and happy. It was a sweet, wonderful thing to see & I was very, very proud of him.


In August of 2015, we started seeing changes in Nick. He began having self injurious & aggressive behaviors. They were fleeting at first but eventually, they were all day long. He would punch himself in the head violently, try to slam his head through sliding glass doors & onto cement floors. He bit himself so fiercely that he was covered in bruises on his arms & legs. We tried everything to figure it out where the behaviors were coming from & how to keep him safe. Nothing worked.
We finally brought him to Children's Hospital of Philadelphia on March 2, 2016. We were lost & desperate for help. After 3 days of Nick being in wrist/ankle restraints and him receiving nonstop injections of sedatives in hopes of calming him enough to run tests, the team at CHOP & I decided it would be best & safest to intubate Nick & place him in the PICU.


He was on a ventilator for 3 days & the docs were able to relieve him of severe constipation, which they'd hoped was causing the behaviors. But, once the breathing tube was removed, the behaviors immediately began again.


The team at the hospital sent Nick to Foundations, a behavioral stabilization unit in PA. He came home after about a week there but, was back at CHOP within a matter of days due to his behaviors. This would become a cycle over the next few months. 4 admissions to CHOP, 3 admissions to Foundations, and his behaviors were only becoming worse. We were fearful that Nick would no longer be able to live at home & that he would have to live in a home or institution. It was frightening & sobering.


Finally, during his last admission to CHOP, we received the news we'd been waiting for; a bed had become available at world renowned Kennedy Krieger Institute in MD. I had applied there for Nick a few months prior in hopes of receiving treatment for him. On June 27, 2016 Nick began his journey there with his own team of specialists dedicated to him. I finally felt hope again.


They intensively collected data on Nick & analyzed his behaviors for months. His primary therapist, Tim worked only with Nick for his entire stay. Eventually, based on that collected data, they developed a treatment plan just for Nick. We started to see progress & couldn't believe it. He seemed happier & more like himself. His dad & I were trained on his treatment plan (safe hands) & we planned for his discharge.


On January 4, 2017, Nick came HOME.


Nick is "Nick" again & his behaviors are drastically milder & 100% manageable with his medications & treatment plan in place. I am no longer frightened of my son & he has a smile etched onto his face. He's happy & actually interested in doing things that we used to enjoy together .. I can take him out to restaurants & stores agains which he used to love. He's wonderful with his brother. They actually play together now & cuddle. Jules even helps Nick when he's upset, guiding him through his "safe hands". Nick seems more at peace.


Life is more beautiful now than ever before. My son is home & I can make him dinner again & help him wash his hair & tuck him in at night. I'm able to just be his mom. I'm eternally grateful to Kennedy Krieger for giving me my sweet son back & I will never spend a day not feeling like the luckiest mom on earth.


So, Jenn & I met 5 years ago when I fell in love with her wedding photography skills. I've not trusted anyone else since to photograph every important event in our lives. And we've been friends ever since. So it made sense when we spoke about photos of the boys together & she suggested coming to the house & photographing our real life. Nothing posed. And I loved the idea. And seeing photos of the kids together, playing, hands over hands for Nick's treatment plan, Nick smiling & even upset... it makes me feel nothing but proud of my family... How far Nick has come & how his bravery this year has earned us a life together again.


I think that for some, it might be difficult to understand why a photo of my 15 year old, crying with his hands on a "safe hands" board while I console him, makes me feel proud. I get that.. I do. But, I've seen him draw blood on himself countless times & I was truly fearful for his life. So, hands on a board with a few minutes of tears.. I'll take it. Because at the end of the day, Nick goes to bed with the biggest smile on his face & wakes up the same. It's been a journey this year & I'm so incredibly grateful for where this journey has led us.




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