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#ClickforHope | Cameron Can | Part 1

I had the honor and privilege to photograph The Cameron Can Foundation’s awesome gala last month. Rory, the founder reached out to me and asked me if I’d like to partner with them through my give back initiative called #ClickforHope. In my excitement, we met at Flur (our local gluten free bakery here in Riverside) on a cold winter day to chat about our passions, life, and desire to make a positive change in the world. A connection was made instantly, and I’m so excited to have made our first partnership with a local non-for-profit. Before I get into more exciting news, I’d love share my images from the gala and my interview with Rory:

What is your story?:
In 2005 when I learned my husband an I were expecting our first child we were overjoyed, and quite frankly shocked as we had been told we’d need fertility treatments to have a baby.  What a wonderful surprise this news was for us!  All along things seemed to be going well, until my appointment at week 28, sure I didn’t feel “great” but what the Dr. told me I never expected and was only the beginning of what would turn out to be one of the darkest times of my life and greatest joys all at the same time.
I was dilated and contracting, off to the hospital I went.  Over the course of the next two weeks in the hospital I would go into labor multiple times, endure many tests and on May 5th they took me for an ultrasound, with my mom by my side as my husband had to work to keep some semblance of normal. I’ll admit I was looking forward to the ultrasound, another sneak peek at our baby. There we sat, my mother and I, as the technician rolled the machine all over my belly, all seemed ok. Then they brought in another woman and I really didn’t think much of it – she introduced herself – Dr Julien. And it was Dr Julien who delivered some of the worst news in my life. Our baby had fluid on the brain known as Hydrocephalus and Dandy Walker Syndrome, and only one kidney. I started sobbing uncontrollably and my mother clutched me in her arms. She said “We can do this” at that moment I wasn’t sure that we could. Turns out we could do this, it has not been easy that is for certain. About two weeks after I entered the hospital, Cameron entered the world on a beautiful spring day in 2006.  The delivery room was filled with 15+ people, several doctors and neonatologists, far from what I suspect the typical birth looks like. He came out crying, he was breathing and as a result I was able to take a deep breath. There was no holding of our new baby, a quick photo and they whisked him off to the NICU. We spent the next 4 days at Prentice in the Special Care Nursery. Upon further discovery it was learned we were dealing with some more problems and he was transported via ambulance on day 4 to Children’s Memorial Hospital where he would spend the next month and have his first of many surgeries. Children’s would become a permanent part of our lives. Now included in Cameron’s diagnosis are the following conditions:

Hydrocephalus

Heart defect

Spina Bifida Occulta (hidden spina bifida)

Tethered Cord Syndrome (surgically repaired)

Diaphragmatic Eventration

Single Kidney

Mild Cerebral Palsy

Dandy Walker Variant

He’s logged countless hours of therapy, 5 brain surgeries, 1 spinal surgery, and 100s of other procedures/testing. MRIs, Xrays, Ultrasounds and the like will be a part of his life indefinitely. Most important, none of this defines who Cameron is. Cameron is a joyful boy, who loves life, laughing and teaches us to appreciate every moment. Two years later, and after a two month stint on bed rest for me in the hospital (ugh) we welcomed our 2nd son Connor also at 32 weeks.  What a surprise he was, in so many ways, and although he spent some time in the NICU, today he is healthy as can be! Looking back you want to tell that girl who was a wreck that it’s going to be ok. This was only the beginning of a very long road, that will take twists and turns you’d never expected. Some of them will be amazing and some trips will be places you’d never like to visit again. But on this road you will learn some of the most valuable lessons in life and you will be a better person for having taken this road.

What inspired you to create Cameron Can?

In 2010 after four years of caring for Cameron, our family found ourselves in a tough spot financially. The many surgeries, never ending therapies, medical bills and emergencies really caught up with us. We had spent over $40,000 in out-of-pocket costs. We were living paycheck-to-paycheck, never able to put anything away to save for our children’s future. Around this time, we had some amazing friends put together a benefit to help our family and Cameron. It was an incredible success and allowed us to pay down all of our outstanding medical bills and create a Special Needs Trust for Cameron’s future. This was a very humbling experience for our family, and we just knew there had to be other families like ourselves who didn’t ever qualify for any sort of financial assistance. And believe me, I tried! We felt strongly about paying it forward and thus, the Cameron Can Foundation was born. 
When Cameron was born, we could have never imagined all he would accomplish by the age of seven, nor did we envision there would one day be a foundation in his name to help others. What a true blessing Cameron’s life, joy and perseverance has been for us.
We believe this cause is larger than one child or one family. The Cameron Can Foundation has the ability to make a real difference in the lives of families and children with lifelong medical conditions. Our goal is to build a continuing legacy of care for families who fall into the gap where financial assistance through typical channels is not an option, even though they are struggling to pay mounting medical bills.
How old is Cameron? How is he doing?
Cameron is just shy of his 8th Birthday, it’s hard to imagine he is going to be 8! And with his birthday in May, not far behind will hopefully be his 2 year anniversary of not having a brain surgery for Hydrocephalus.  While he has been hospitalized twice in the last few months, we have successfully avoided surgery!!  Although Cameron keeps everyone on their toes and is affectionately referred to as the “mystery wrapped in an enigma” he is for the most part healthy right now. The thing with one of his conditions, Hydrocephalus, is you can one day be perfectly fine and the next heading into surgery.  We monitor him closely but are also sure to let him be a boy!

Surgeries, specialists, test and therapy are a part of his life forever.  Some days it’s hard to wrap your head around all this, but most days you feel lucky to have your kids at home with you and not in the hospital.    Cameron is doing really well in school, he enjoys 2nd grade in a general education classroom with assistance from a variety of therapists and an aide at school.  He loves music, lights and figuring out how things work.  Imaginary play is his forte, if you saw him on the playground today he’d be managing the “Red Mango” yogurt shop he has created with some signs, wood chips.

What is your source of help/encouragement to stay strong and positive?
Honestly it’s seeing what so many other families are dealing with on a day to day basis, every time I set foot in the hospital for a clinic appt or test I am reminded of just how  blessed we are despite the circumstances we face. I have to stay strong for both my boys, Cameron and Connor, after all they are both very strong.  We are honest about Cameron’s situation now that they are getting older, and so we all need to be positive for one another.  My husband and I do a good job of leaning on each other when the other might be feeling defeated or scared.  We make a good team.
What encouraging words could you give to a mom/family going through a similar situation?
I have spent some time volunteering at Lurie Children’s speaking with new parents to babies in the NICU given our experience there.  I always tell them to take it day by day, ask questions but also to be very present in the moment.  Looking back I feel like I missed many parts of the joys of having a new baby, and not just the obvious ones that I still long for – but even just being at home with your baby and and celebrating the little things, not tracking milestones.  I was so wrapped up in all the Dr. visits, therapies and more.  Be sure to take the time to just “be” with your baby and this carries through toddlers and beyond.  I try to remind myself of this everyday.
I also always encourage parents to advocate for your child, in school, in medical care, in everything you do for your child because I have learned more than once the “mom gut” is never wrong!  Educate yourself in many areas and find the right team to help your child be all he or she can be.  These children are amazingly resilient, while the Dr.’s painted a very grim picture of Cameron’s future, I can tell you they are quite often amazed by what he has accomplished.

 

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