Wednesday, March 27, 2013

Finding Balance

As we continue on our journey of life with Cam, we once again discover that finding balance is key.  What I don't understand is why doesn't it ever get any easier to find that balance? Why as humans do we find ourselves consumed by our worst traits when times get hard? Why do we feel the need to hit near bottom before we realize the need for help and balance?  I guess we call that "human nature", but boy does it make for some bumps in the road!!!!

Every time we have faced a decline in Cam's health or a major change in his medical needs, everything seems to fall out of balance.  I tend to deal with these situations by bringing out my controlling side, I have to know everything about everything, I have to make all the appointments, I have to know everything good, bad and ugly about what is happening, I research things to no end, I talk about it to everybody and their brother.  Meanwhile, Kevin deals with it in denial until it's right in our face, he internalizes everything and releases some of it in time when he can handle it, he tries to interrupt my control, to no avail, and then lets me go on my manic control spree which ends in all sorts of crazy feelings.  Although a lot of those feelings are not justified, they hang in the bounds until we reach the bottom and are strong enough to look inside and decide to make a change.  This my friends is exactly the pattern of the last few weeks since we have returned home from the hospital.  We came home with new responsibilities, which in turn changes the dynamic of all the relationships in the house.  This morning I woke up and decided that today was the day to climb out the hole and get our balance back, take responsibility for my actions and find happiness, so off to yoga I went.  I left feeling like a new person, ready to take responsibility for my portion of the unjust feelings as well as talk through the ones I didn't feel responsible for.  What I did realize though, for probably the thousandth time in my life, I cannot expect anyone to take care of me better than I take care of myself, and that is where I went wrong.  I was expecting people around me to do things that I had never even asked them to do, like they were mind readers, and then allowed myself to be disappointed when they didn't do it!!  Seriously!  One of the most important things this roller coaster has taught me over the years that I can only be the best mom, wife, boss, and friend if I put myself and my happiness first.  I have discovered that while life may give you more than you think you can handle, peoples actions and words can affect you in the moment, and sometimes you feel like everything is against you, only you are in control of the outcomes and your happiness.  How you respond to the obstacles, challenges, actions, and words, combined with your ability to talk things out and most importantly the ability to take responsibility for your own actions and feelings is what truly finding balance is all about.  

Tonight as I sit on the couch and look over at the two greatest gifts in my life I feel balanced.  It feels like a weight has been lifted off my shoulders and am looking to tomorrow, not looking back at yesterday. 

I cannot imagine what this roller coaster ride must feel like for a 10 year old, but it however it feels it doesn't seem to stop Cam from finding his happiness.  His birthday party was amazing!!!  He had friends and family over, the Game Truck came to the house and everyone had a great time.  As the parents came in to drop off and pick up their kids, Kevin and I had an opportunity to speak with some of them and were amazed at the amount of compliments they gave Cam.  They all raved about him being the happiest kid in the hallways, always offering a smile and a good morning or good afternoon, telling us how their kids come home talking about how great Cam truly was a humbling experience.  After the kids came in from the truck and had cake they were headed downstairs.  I asked Cam if he needed help and he replied "no, I got it Mom" as he slid off his chair and began to butt scooch, I witnessed an act of kindness that could only come from a child.  His friend sat down next to him and scooched all the way across the floor and down the stairs with him.  I wanted so badly to take a picture to capture the moment, but all I could do was stare in amazement and hold back the tears.  Cam is surrounded by a support group larger than I ever imagined and we owe a big "THANK YOU!" to everyone who reads his blog, helps him at school, offers thoughts and prayers, raises children that are so kind, helpful, and warm hearted. 

This week Cam was asked to be the manager of the boys' volleyball team at his school, and much to my surprise he said YES!! I am so happy that he will be part of a team and that his friends found a way to include him in something that he otherwise would not have had he opportunity to experience.

  We are blessed to live such a life and feel such love and support!

Tuesday, March 12, 2013


Well after another loooonnngg day at Lurie Childrens we have another clean bill of health.  Cam and I spent the majority of our day downtown doing a pulmonary function test and meeting his new doctor.  Along the way we found ways to entertain ourselves with the nose plugs they use :)  The test was long, but painless and the doctor was incredibly nice and informative.  Cameron's test results showed some very strong numbers as far as lung capacity and ability to pull air in.  He is able to use 87% of his lung capacity and breath in at 88% which is great!  The only number that was low was his ability to push the air back out, which came in at 47%.  She said this is completely normal in MD patients around his age because that uses the smaller voluntary muscles which are usually some of the first affected by the disease.  She has a very proactive approach, which I loved, and suggested that sometime before next winter we come in and learn how to use a cough assist device ( and get one for the house.  She said she could set us up with one now, but it was not urgent as we are coming out of cold and flu season.  They recommend for us to have one on hand as Cam gets older because as the disease attacks his muscles, coughing will get more difficult and a basic cold could very easily take a turn for the worse if he cannot produce a productive cough.  I appreciated her proactive look at things and as soon as we are fully adjusted to the tube we will be adding one of these devices to our current collection of medical supplies.  She talked of a lot of things that could potentially become issues in the future, but once again cannot give us any firm prognosis as Cam still does not have an exact diagnosis.  She spoke very highly of the new neurologist and clinic that we will be attending in the coming months, which was reassuring.  Changing doctors and clinics is always scary and filled with challenges so it is always nice to hear positive things before you go.  She told me that the neurologist was at the forefront of genetic testing and had many connections in the MD world, which is exactly what we are looking for.  Genetic testing has come so far since we last tried to find a diagnosis that we are hopeful we can find the answers we are looking for!

For now we are breathing another sigh of relief and looking forward to Cam's birthday and summer being right around the corner............

Which brings me to tell you about a conversation I had with him the other night, while doing Legos, that weighs heavy on my heart.  Last summer we invested in a dune buggy, an ATV and a trailer so we could go off-roading as a family.  Cam loves being outside and riding the four wheeler, but cannot ride as a passenger at many of the off road parks so we bought a 2 seat dune buggy!!  Even though it seemed to break down every time we took it out, Cam loved it.  We would come back after a run full of mud laughing so hard we couldn't talk.  Kevin and I got to talking about plans for this summer and started thinking about how Cam's body has changed and started to question whether or not his body could take to rough ride anymore, or if he would even want to go anymore.  Ever since he his g-tube placement his mindset of what he can and cannot do anymore has changed drastically.  He no longer wants to be in band, which he was so good at, because it's too hard to breath with that much force now.  He will no longer pull himself up into chairs or out of chairs in fear of hurting his button .  While I understand why he is afraid and no longer wants to do these things it breaks my heart to see.  I casually brought up the dune buggy conversation while we were working ever so diligently on his lego project and at first he said he was looking forward to it.  So I said great and we continued on.  A few short minutes later, after I watched his wheels turning ferociously, he looked up and said "actually I don't think I can do it anymore".  I inquired as to why the change of heart and he briefly explained that where the seat belts are they will hurt his button and he just doesn't think he can handle it.  At that very moment my heart broke once again, I wanted to crawl under the table and cry like a baby.  But I didn't.........I gathered my thoughts and tried to continue the conversation, which became a one way conversation very quickly!  I could see the hurt in his eyes every time I looked at him and he immediately shut down.  This is pretty typical when we talk about things of this magnitude.  He told me he didn't want to talk about it anymore, but would not tell me why.  I knew why, I just wanted him to open up and let it out but I guess he is not ready.  I am hoping one day he will talk with us, or someone else, about his feelings and dealing with his body changing but until then, all we can do is offer our love and support and let him know we are here when he's ready.  Later that night he told me that he liked our idea of selling the dune buggy and getting a little travel trailer to go camping :)  so if you are looking for us this summer, we will be camping!

Sunday, March 3, 2013


So what is the true meaning of "friendship"? 

Cam can tell you................
It's the one person who wants to be like you because it makes you feel good!  Even if it means doing something you don't do everyday.
It is someone who does arts and crafts instead of the swing set because you can do it together!
 It's someone who shares their birthday party with you because you are only a week apart!

It's someone who goes to the beach and builds sandcastles and holds you up because it's hard to stand in the sand!
It's someone who lets your cousin hang with you and be silly, even if she's a girl!
It's someone who helps you up when you are down!
It's someone who will sit next to you when that's the only thing you feel like doing.

Cam is so lucky to have a friend that has been there through everything and no matter what, still stands by his side.  They have a special bond that I hope everyone has the opportunity to experience in their life. 

Cam had a great appointment this week with the cardiologist.  We were there for what seemed like forever, they did an EKG, an echocardiogram and then the Dr. came in.  She said Cam's heart was in great shape, was the right size and she didn't need to see us for 2 years!!!!  The best appointment we've had for a long time.  We are hoping the rest of our appointments continue to go this good so we can continue enjoying the peak of life :)