Happy Anniversary Nick!

 On December 20th 2013 Nick celebrated is second remission anniversary!
While there are still lots of appointments to make sure that cancer keeps its distance we remain incredibly blessed and lucky.
Nick's health continues to improve as does his outlook on life.
Nick recently completed high school and is scheduled to begin college in the fall to become a social worker.
His goal is to work internationally doing humanitarian work.
I cant take much credit for the man that he is becoming but I do give myself a pat on the back. For being born to a 14 year old girl he has turned out pretty well.
I am excited to continue watching him grow and morph into an adult. 

I am a photographer

Back when Nick was sick and I was encouraged to pursue my love of photography as a profession I was skeptical about my skill level. I felt like I was just playing photographer instead of being a real one. I thought that the more I worked the more confident I would become and eventually the phrase I'm a photographer would be more easily said but here we are two years later and I still struggle with it.
I have loved photography for as long as I can remember, I look back at the pictures that I took when I was young and I can still remember the passion that I felt even back then. When I got my first house even though I didn't have a ton of money the first thing that I bought was a framed piece of art work. Cost my entire months salary but I had to have it. My brothers still make fun of me for spending money on a picture of a cow.

The truth is that my confidence was shaken because I didn't really know the truth about photography. I didn't know that realistically the majority of photographers take more "bad" pictures then "good" during a session and that so many pictures today are digitally altered and enhanced. I would do a shoot and take 100 pictures and end up with 40 that I really liked and I would feel like a failure.... ready to throw in the towel because I felt like a fraud. Little did I know that it is actually common and normal.
I also feel like pictures should be as close to natural as possible so aside from a few mild tweaks here and there my images are very close to SOOC (straight out of camera).
I watch tutorials about editing and I truthfully have no desire to smooth a mothers skin or add brightness to a child's eyes.... I want their beauty to be real not created via my computer.

Recently I reached out to another photographer who's work I adore. Its very different then mine but I see many of her shots and I get goosebumps. She charges an arm and a leg (and a few internal organs) but she must be worth it because she is highly sought after. She is what I think of when I imagine a "photographer".
I sent her a message thanking her. I told her about how there have been a few times where I have considered putting an end to my photography "career" but then I will see something that she posts and my spark is reignited and my passion refreshed. That her talent is something amazing and her skill is something that one could only strive for.
She saw my message and never responded.... not a single word.
I realized that I put someone on a pedestal and created them into something that they are not. I created this kind and amazing soul who also takes great pictures and in reality she didn't even have the manners that god gave a billy goat.
The truth is that I don't have a bachelors of fine arts, I don't often follow the "rules" of photo composition, I have no desire to photoshop the hell out of something real and turn it into something artificial and 
I love black and white photography far more then colour most of the time because it causes me to feel the picture instead of simply looking at it.

A couple weeks ago I did a session for a friend and I was so unhappy with the turn out that I messaged her and told her that I was refunding her money. She told me that I was ridiculous and I was truthfully annoyed with her confidence in me. I couldn't see what she saw. I looked at the picture and all I saw was uneven light across her daughters face, I thought she only liked it because it was her daughter... she had to like it, but then I started seeing the comments from others who were unbiased in their opinions and a light bulb went off in my head. I am my own worst critic and I worry about the judgement of what I put out because I created it, its me.... its my work, its something that despite involving others is so personal and it scares me to feel so exposed. What if nobody likes it, what if someone thinks I'm bad or untalented, what if someone feels like choosing me was a waste of their time and money..... these are the thought that enter my head every time I edit. In the end the problem is not my skill level or lack of education or lack of love for photoshop, the problem is me. And its not only photography, it spills over into other areas of my life to, I am my own worst enemy and the harsh judgement that I hear is only my own. I need to nip this in the butt right now.

I need to get out of my own way and see where my love of capturing life can take me. I need to see who I can be with true confidence. There have recently been some financial changes in my household and it was crystal clear that I needed to earn more money. I toyed with the thought of returning to teaching daycare but I would simply be going through the motions with no real affection for the job. While I may take that route on a supply/substitute schedule I also decided to expand from natural light photography and also include artificial lighting and open a home based studio. I can accept more clients and I wont be so weather dependent. I need to get out of my comfort zone, see what I can create when I am not afraid of the judgement of others (or myself) because after all I AM A PHOTOGRAPHER! 

Click Here To View A Slideshow Created By Treasure Beyond Measure Photography

Fifty Eight Days

We got a date!
Maxwell will be having his heart procedure in 58 short days!!!
Imagine me running on the treadmill at the gym while talking to the hospital coordinator on my cell and taking notes on my ipad. I'm sure that I looked like a self involved snob but some days that's just the way its got to be.
I am both nervous and excited to have it happen. Now our goal will be to keep the germs at bay so that he doesn't end up sick, hard to do in a class of 30 kindergarteners but we will try.
We told Max that we will get him some new pj's, a pair of slippers and a new stuffed friend to snuggle when he's not feeling so good.
While the actual procedure is considered a day surgery Max typically ends up having to stay over night for one reason or another. Considering that he will have an ECHO, ECG and X-ray done the previous day and the day after surgery it just makes sense to stay in a hotel close to the hospital; until I saw the hotel prices, I mean really if I'm paying almost $300 a night do they really need to charge $30 a day for parking too??? 
At the moment I am just making a game plan for babysitters, school and all the other factors that need to be considered when having a big and unique family but I'm celebrating that Maxwell is on the way to a healthier childhood. 

How an ASD is closed via cathetherization

Scarless Ivory Skin

Pictures can be powerful things, they can evoke multiple emotions and perhaps that's why people love them so much, I am frequently moved by images that I see and I think that is why I decided to become a photographer but the other day a picture stopped me in my tracks. It was one of those annoying lets see if this picture can get 1000 likes on Facebook. The picture was of a little baby fresh out of heart surgery with the staples still holding him together. I seriously caught my breath, I had the sudden realization that my child would soon look like that. His ivory soft skin would have cold metal staples embedded in them and the thought made me sad. My goal for years has been to get Maxwell stable enough for surgery and its finally happened but I had never thought about the actual surgery or what would follow after.
I tried to put the thought of my little boy with a giant scar to the back of my mind. On Saturday I had my annual reading with L and while there is still a certain level of healthy skepticism there is also a sense of awareness based on the fact that she has been accurate about many major things over the years. During my reading she said that she didn't see any major surgery, illness or injury, I thought she was off her game because I knew that we were waiting for the phone call about Max's upcoming open heart surgery. Then less then 48 hours later I get the long awaited phone call from cardiology, there is a surgeon at Sick Kids Hospital that is fairly confident that he can repair Maxwell's atrial septal defect via catheter instead of having to open his chest! Holy Cow, a day procedure instead of a week long hospital stay, a small scar in his groin vs a giant scar running down his chest, a band aid instead of staples... this is incredible news.
So now we wait again, the coordinator is going to call with the dates and times for his pre-op tests and then we cross our fingers and hope that the surgeon's confidence proves accurate. 
I guess "L" was right again.

Buckle Up

Today was a big day for my biggest boy, he got his G1 learners permit and can now drive. He has been asking to go write the test for months and I have kept stalling.  The truth is that having him behind the wheel of a car terrifies me. That's a lot of responsibility for someone who only recently learned to do his own laundry and work the Tassimo machine.  I worry about whether I have taught him well enough to make the choices that will not only keep him safe but others as well. Will he wear his seat belt, will he drink and then think he can drive home, will he be distracted and careless or give into the rage that can sometimes occur. These thoughts scare me to death but there is nothing I can do except let him spread his wings and fly a little. He is signed up for a drivers ed class in the spring which will give him 25 hours of in class instruction and 10 hours behind the wheel. As much as this preparation is for him it is also for me to. This is another step on the road to adulthood that I am not fond of my kids traveling down.  I know.... I know.... I have mothering issues.... I'm aware and working on them LOL.

Its Been Months!!!

Hi everyone! Its been brought to my attention that I havent blogged in months so I figured I should make more of an effort since clearly people wonder about us.
Over the last few months life has been busy, our renovations have been completed and I love the end result, now is the fun stuff, the customizing and creating the feel that I want our home to have. Dom returned to work after a four month hiatus to manage his newly discovered diabetes and anxiety disorder and the kids all returned to school... ALL of them. I am now the parent of school age children!
I debated about what to do with myself as this is new territory for me, I even handed out some resumes and toyed with the notion of going back to work but given the amount of appointments and days where Max feels under the weather I would be away from my job more then I was there. Clearly its just not the time to return to the working world yet. Instead I spend my days being a domestic goddess (*giggle*) and focusing on my health. I have lost a bit of weight and improving my health is a focus so that Dom and I can move forward with using those seven little ice baby's that we have stored safely at the lab. Last month I participated in a Color Me Rad run and while I don't feel the need to do it again it was a fun life experience and something that I wanted to cross off my bucket list.
We recently had an appointment with cardiology and Maxwell now is considered medically stable enough to have his open heart surgery. We are currently waiting to hear from the hospital regarding the next steps but from what we were told it will likely be in the early months of 2014.
Stay tuned for more blog updates from this newly appointed Domestic Goddess... 

Cannon Ball Summer

Holy cow its been a while since I've blogged, if I'm being totally honest I forgot that I even had one.
Since my last update life has been pretty good. The boys are all thriving and things are calm and happy.
Summer is coming and we have been getting ready for that, one of the things that the kids love to do is jump into the swimming pool. While its fun for them, its terrifying for me... watching them try and balance on the top of the ladder as if they are in the circus. Dom has some time off work so he built a deck around part of the pool. I'm really happy with how it turned out and the kids are getting impatient waiting for the pool to warm up so they can practice their cannon balls safely.
Our house renovations are starting any day and its going to look fantastic once its all done, we are already planning our post reno open house (yes that's how eager we are!)
Over the last few weeks Dom and I have made a point of focusing on our marriage, its been a while since our family's last crisis and it was time to get back to basics... date nights, back massages, mushy text messages and simply being present for each other. For years we have been like ships passing in the night and that's not the example that we wanted to set for our kids. Nick has started dating and I want him to have a good understanding of what a quality man is and how a woman should be treated.
I have to say, its nice to write an entry that isn't all doom and gloom and full of wishes for better things.
The better things are happening.

 

Let Me Fill You In

Today is Easter Monday and since its a long weekend all my kiddos are home from school and the routine has been thrown to the wind. Today would be a good day to update the blog which I've been meaning to do for ages.
Nick got his scan results back and he is still in remission! The chemo and long time vomiting did cause a lot of damage to his teeth which we are now repairing (poor kid - I am the biggest dentist wimp so I'm not a very good support person lol)
He has also made some pretty interesting and fun life decisions. After graduation Nick is going to Ecuador on a mission trip to volunteer with the street youth. Humanitarian efforts have always been something that has interested him so I'm glad that he will get to fulfil a goal. We have also decided that he is old enough to finally get some answers about his nationally.... you see Nick's birth dad was placed for adoption as a baby as was his (dad's) birth mother.
Two generations of adoptions makes for little accurate information.
Nick is often asked "what he is" because of his dark complexion and features.... we've been told french but he could pass as a large number of different ethnicities. We've found a lab that specialized in DNA for this exact purpose and it isn't as expensive as I'd assumed which is good because money in our house is now something of the past for a few reasons.
1. We got the renovation loan and we'll be starting the upper level renovations anytime!
I am so excited, its been a few years in the making and I cannot wait to see the finished product. My vision is a spa like tranquil place that is helpful with calming the mind and spirit. Lots of white with accents that sparkle and shimmer, hints of plum shades and textures that are soft and inviting. I know you are thinking "white... is she nuts" - the answer is yes I am a bit crazy but I am looking at things that are very washable.
2. Maxwell saw the allergist and is allergic to quite a few things. The list was wheat, yeast, oats, nuts - combine that with his primary lactase deficiency and his diet is less then convenient.
What we were told was that when he consumes these foods the walls of his colon get inflamed and can even blister resulting in stomach aches, bathroom trouble and an inability to absorb nutrients. The term that the specialist used was eosinophilic colitis.
He is now on a gluten/yeast/nut free diet and can only consume dairy after he takes a special enzyme. Its a doable diet but it takes creativity and its far from cheap. We know that we have found the answer though because since making the diet changes and taking medication for his JRA he has gained almost 2 pounds and had grown 3 inches.  He now sleeps soundly and cries much less.
Kurt and Riddick have started swimming weekly and are still doing very well, their lives are very consistent and routine and that's how they thrive best. I am curious to see how they cope with the renovations since change is challenging for them (especially Kurt) but I am sure that the thought of a new and fancy toy room is going to ease the transition.
Well.... that's all for now... I'll make it a priority to be back soon.

I'm Itchy

I've got the itch... the itch to do something.... anything.... the winter blah's are finally getting to me and I am starting to feel myself cracking.
This is normally around the time when I feel the need to do something different.... tattoo's, new furniture, new vehicle, another round of IVF - BAH just ANYTHING.
I am hoping that our renovations will help ease the boredom because if I am being totally honest its gotten to the point where I found myself considering a consult with the dentist about some veneers to create a perfectly straight set of pearly whites when I smile (since I refuse to be 31 with braces).
Life for our family right now is wonderful. Maxwell's biopsy results showed that in addition to his primary lactase deficiency he has non-specific colitis and elevated eosinophils which basically means that they are pretty sure that he has an allergy to something that is a main staple of his diet. We are returning to Dr O who is the allergist that discovered his heart problem for some testing to find the source. I know that he is in good hands.
Max has also been registered to start kindergarten in September - where has the time gone?!?!
Nicks CT scan is in a couple weeks but he's been feeling good and doing well so I am confident that things will be a-ok with him. He seems to be more dedicated to school and has a better over all attitude and he seems to no longer be living life like the cancer is coming back tomorrow.
Kurt and Riddick are still doing really well in school and Riddick can now read!
He is not overly confident in his new found skill but its there and its only a matter of time before he will be eager to show off his ability to anyone who will listen.
So you see life is good and while its still busy its not chaotic, there is time to be social and have friendships, for Dom and I to have some romance and make our marriage a priority.
And maybe just maybe allow me to blog about things that aren't kid and medical related -GASP could you imagine???
Stay tuned..... who knows whats next! 

He Found His Inner Ninja

I am exhausted! Today was mighty long but it was wonderful.
Thanks to the Children's Wish Foundation Nick was presented with the opportunity to have some fun and do something nice for himself after a couple of rough years.
I remember back to his birthday right after his diagnosis when he changed his mind about getting the shoes that he wanted because the only place that he would be frequenting was the hospital - it broke my heart, but today the boy is sporting some fresh kicks and he's got more then just one pair.
Today he took a shopping trip to Mapleview Centre in Burlington and it was a great day.
The staff were beyond friendly especially AnnaLisa at Foot Locker, Hannah at Turtle Jacks and Cody at Lids. The mall smelled of popcorn from Kernels and its almost like the music was a soundtrack specifically for Nick (which it obviously wasn't lol) - I think in almost every store that we went to Classified's new song "Inner Ninja" was playing which I thought was quite fitting as it's reminded me of Nick since I first heard it.
We were treated to lunch at Turtle Jacks and it was great to see Nick smiling and eating and so relaxed, its been a long time and it really warmed my heart.
One of the things that Nick likes from that restaurant is Deep Fried Pickles (which are actually very tasty)
Being a team player today Dom even had one (close your mouth I know its shocking) anyone that knows Dom in real life knows that he's no foodie and his meal of choice is (say it with me now) a bacon cheeseburger and fries - I was glad that he tried it, tried something that Nick likes, the start of some commonalities.
We shopped for hours and Nick now has more clothes then the Kardashian sisters combined and he isn't done yet. There will be more shopping in his future as even with financial freedom he looked for the best bargains (except for in Swarovski.... he takes after his Mama lol)
I'll admit it there was a moment over lunch, a fleeting moment where I was sad. I was sad that my child had to experience so much to have this day. That not that long ago we were buying hats to cover a bald head instead of buying them for style. The moment passed quickly and the retail therapy was back underway, I think that today I saw Nick smile more then I have in the last 2 years combined.
Mission accomplished Children's wish and Mapleview... Mission accomplished! 



Click here to hear "Inner Ninja" (with lyrics written) - Its not a song meant for beating cancer but it certainly makes me think of Nick when I hear it!

What A Pain In The A**

My house is quiet today, Nick is at his Nanny's house, Kurt is having a visit with his birth mom, Riddick is playing with lego and Maxwell is swimming in the tub. The smell of Butter Pecan cake is wafting through my house and my stomach rumbles every time I inhale.
Its been a crazy couple weeks to say the least so I am enjoying the slow pace that this weekend has brought. Our chaos started two weeks ago, it seemed like Max had never ending appointments. One of our appointments happened to be with Rheumatology. I debated for days prior about cancelling, I thought whats the point, we ran the autoimmune blood work and it came back fine, this is a huge waste of time.
I reconsidered and decided to just go, and I am glad that we did.
Dr Tanya was wonderful and was so child friendly (imagine that in a children's hospital!) - she sang and played games and made the physical exam/assessment fun. She was also familiar with Max's medical history and had looked at his previous blood work results. As it turns out this appointment was going to be a giant leap in the right direction. During her assessment she noted that Max has inflammation in five of his joints, both elbows, both ankles and the pointer finger on his left hand. She also pointed out that similar to his chest abnormality he also has bony abnormalities of his knees which seems to be painful for him (In 3.5 years I have never noticed that). We were sent off for x-rays and more blood work and in the end he was diagnosed with Polyarticular Rheumatoid Factor Negative Juvenile Arthritis. He was started on anti-inflammatories and we will be seen back in clinic in six weeks to discuss the x-rays and how much we should adjust his medication. This diagnosis explains a lot of Max's symptoms, often times kids with JRA are anemic and have eye inflammation and stomach/bowel problems.
Because of that the doctors were all in agreement that we should move ahead with the colonoscopy.
I was forewarned that that prep for the colonoscopy would be the worst part but thankfully Maxwell breezed through it and it was mostly like any other day.
The morning of the scope we arrived at the hospital and checked in and our fantastic nurse got all of our registration stuff done. When it was time the doctor came out and explained the risks and I had Dom sign the consent forms because I was holding Max. Dom was quite uneasy with this, the risks are low but he was quick to remind me that our kids always seem to fall into the percentage with complications.
We were both able to go into the room with Maxwell which is unusual and we got to snuggle him while he fought the cookie scented gas that lulled him off to sleep. We were told it would take about 20 minutes and so we took a bathroom break and grabbed some coffee before heading into the waiting room. Twenty minutes turned into and hour and I was hoping that Dom wasn't watching the time. When the doctor came out we were called into the small consultation room to chat. She started the conversation with initially things looked normal, but that's when the conversation took a turn. She followed up her statement with but once we rounded the last curve of the colon we found a large bleed, we backed out and noticed that his colon was looking pretty inflamed. She then let us know that they had sent Max for x-rays to check for punctures, and blood work to check his hemoglobin because he may need a blood transfusion. He would be admitted to the hospital while they got things under control. Once in recovery we were told some basic things about the procedure, that Max's colon has lots of nodes but they aren't concerned because his stomach and neck have enlarged nodes too which can be attributed to the JRA.
They also said that they didn't take many biopsy samples because he was already bleeding so its likely that our results (if any) will be limited.
Thankfully we only required one nights stay at the hospital and Max was able to avoid any transfusions so all in all things were scary but worked out alright.
The confusion for me/us stems from the different doctors having different opinions on what happened. The doctor that did the colonoscopy was a colleague of our GI doctor (whom you all know I don't like lol) - she was very shaken and actually said words like "more blood then I've ever seen", We were also closely followed in recovery by many different doctors who quickly swarmed every time Max passed gas to make sure that he wasn't hemorrhaging and refused to take him off NPO status and allow him to eat just in case he needed to go back to the OR.
After a few hours our GI doctor came downstairs, he as per usual was quick to dismiss what happened as anything problematic and said that the bleeding was likely caused by the colon rubbing on its self as the camera navigated through, now I'm not going to be bitchy enough to say that he's full of crap but what I will say is that his statement caused the rest of the medical team to roll their eyes and despite hours of googling from the hospital bed I have not found anything that backs up his statement. For whatever reason this man refuses to admit that maybe just maybe there is problem and he dismissed my previous concerns. I don't know if its ego or what but a child could be on fire in front of him and he will call it a minor burn - its frustrating to say the least.
Now we wait for the results of the biopsy. My hope is that if there is something that needs management its able to be done from a rheumatology standpoint vs GI because then we can close our file and dwindle down our list of doctors. The goal is for Sick Kids to feel that Max is medically stable and then they may be comfortable moving forward with the heart repair sooner then later. In the end a childhood as close to normal is all that we want for him (and all of our kids!)