Our middle guy at his Wish reveal party with Batman.

Hello everyone,

February is Heart Month with the Heart and Stroke foundation. It is also Rare Diseases Day on February 28th. Two very important  health issues that hit close to home for our family. Our middle guy has an Undiagnosed Disease that is so rare, the National Institute of Health in Washington has told us that they think it should be named after him if they are ever able to figure it out. I am dedicating todays post to our health. I am, everyday, thankful that my boys are healthy right now as I know only too well how fast that can change.

I have volunteered to canvass for the Heart and Stroke foundation of Canada. I am doing this because our middle guy has had two life saving heart operations, the first at 3 months of age and the second at 18 months. At three months of age, while we were driving home from a friends, our ds started crying and grunting like he couldn’t catch his breath. I instinctively knew something was wrong and told my hubby to pull the car over at a gas station coming up on our right. He ran in and asked for the phone to call 911. Waiting for the EMT’s, I performed rescue breathing on our tiny little baby boy thanking my lucky stars that the hospital where he was born had recommended I take infant CPR before they allowed us to take him home. It was the longest wait of my life and even now plays like a distant movie in my mind that I had the unpleasant experience to be a part of. By the time the EMT’s arrived his oxygen level was only at 40%. He was diagnosed with congestive heart failure as a result of a Patent Ductus Arteriosus ( a hole in his heart). He had surgery 10 days later to close it.

At 18 months of age, he was suffering from pulmonary valvular stenosis (a narrowing of his heart valve) which was causing him high blood pressure,  he was burning excessive calories, failure to thrive, hepatomegaly (an enlargement of his liver) and a lack of stamina. He underwent open heart surgery to repair the valve in a 6 hour surgery and then endured 6 weeks of recovery. It was a very difficult time for our family but we are very grateful that we are live close to one of the best Children’s Hospitals in the world. This is only two of 17 surgical procedures he has undergone in his short 10 years on this earth so far, but they were by far some of the scariest situations we have ever been in.

The time we spend in the hospital makes us very thankful that our son is stable and healthy right now. He has had a very tough road and it will be a lifelong struggle for him as he suffers from a myriad of health issues, but he is certainly not the first and won’t be the last to go through a situation such as this. 9 out of 10 people have at least one risk factor for heart attack or stroke. I know at least two people who suffered a stroke and one person who had a heart attack, all  in their early thirties. So please take  care of yourself. Take time out of your busy day to decompress, stop smoking, exercise, eat a more healthy diet (including the occasional piece of chocolate cake), encourage your kids to be active. Lead by example. We all need to take responsibility for our health. I am by no means the most active, nor am I a size 6, but I do try my best to follow these few rules to live by. My grandpa just celebrated his 93rd birthday and he’s still on the go all the time. I only hope that I can do the same at his age.

My gratitude for today:

1. I am grateful that my boys are so giving of their time and are willing to join me in my campaign for Heart and Stroke
2. I am grateful to all the people who have donated or who are donating to Heart and Stroke during their Heart Month campaign
3. I am grateful for the doctors who treat us like family and take a genuine interest in our family life and our sons health
4. I am grateful for the wonderful nurses and volunteers who make our hospital stays and visits bearable
5. I am grateful for our family and friends who have always been there for us when we have had to stay days on end in hospital with our little guy, taking our other boys to and from school, feeding us and keeping our spirits up
6. I am grateful for my oldest son who has had to grow up too fast and deal with many situations most adults wouldn’t be able to handle, he is a strong and wonderful young man, who has a great sense of importance of family and what is really important in life.
7. I am grateful for my hubby. Most marriages do not survive the turmoil of having a child with special needs (let alone two), yet we both agree that it has made us stronger and our relationship stronger. He is my best friend, my rock and I couldn’t imagine my life without him. I lucked out with him and everyone who knows him agrees!
8. I am grateful for the network of special needs parents who are always available to us for advice, a shoulder to cry on, or who give us moments of clarity that allow us to appreciate all that we have and to be thankful for the all the small gains we make each and every day. They are some of the strongest people I know (Kristy P. if you’re reading this you are most definitely on the top of this list)
9. I am always and forever grateful to live in a time where the technology exists to save the life of my son, not once, not twice but on three different occasions
10. I am grateful for programs that assist families like ours, including Heart and Stroke, Spina Bifida and Hydrocephalus Association, the Undiagnosed Diseases Program at the National Institute of Health in Washington D.C., Make a Wish Canada, The Hospital for Sick Children (and the Children’s Miracle Network), SWAN-USA, Global Genes Project and many many more

I hope I don’t come off as being preachy, as this is not my intention. I only know too well how important our health is and I thought it deserved a place of blog honour today. Thanks for letting me have my say.

Colette