CHD awareness month - February

Hey all!

I am happy to announce that out trip along with MANY magical activities are planned and booked for our week at the Wonderful place that is Disney. Monique is VERY excited, as we all are very much looking forward to some fun!

February is CHD awareness month. Before Monique was born I had not a clue what CHD was, I had never seen that acronym in my life. So many people have no idea this condition even exists! Image all the wonderful things that could be done for our children if only more people knew about our children who are born with broken hearts. Even though it is the #1 killer of infants why is it that this condition is not more known, publicized, researched.

When our kids are sick, the flu, a cold... it is NOT just another common illness.
When our kids go to the dentist... it's NOT just a check-up.

:) ...

Welcome 2012

It has been a while since I last posted... most people probably have stopped looking for updates. No news is good news right. Many things have been happening but I didn't feel the need to vent online. A new year means a new beginning and a new outlook on life. I have learned many lessons in 2011.

Life is too short to live for anyone but yourself, your children and your family.
Don't sweat the small stuff.
If your house is a mess it's ok... kids are having fun!
Stand up for what you believe in, make sure you are heard the way you want to be.
Smile.
Love.
Laugh.
Give and receive all the hugs and kisses you can.
Say "I love you" to all the people you love, including yourself.
Don't be embarrassed by who you are or choices you make.

2012 will also bring many new things to the table I am sure.

Monique's wish will be granted this year. We are planning it right now and our week is completely booked! This wish means so much to me. Monique is being granted a wish for all her rough times past and future. But in a way, this wish is a dream come true for me too. I have been there, watching without being able to take any pain away or make any procedure easier.

Watching her experience the joys of a magical place such as Disney will be the highlight of my life. There is nothing more in this world that I want more than for Monique to live life to the fullest without having to worry about her medical condition tying her down. To many, she looks "normal"... and I am sure there are a few people who do not understand. That is ok. I can accept that because they do not see the times when she is not "normal". These times are not for everyone to see. I will proudly post pictures of the times when her face is full of joy, not the times when they are full of pain and fear. These are private times.

If there were any way possible for her not to qualify for this wish that would be ultimate. But that is not the case. So we will take this opportunity to celebrate Monique and her life together as a family so we can look back at them when our lives are not all that much fun.

ox... Faith

busy... questions...

The school year is winding down again. I regret to announce that the planning didn't fall into place for us to go on Monique's wish trip this March break but she is looking forward to going very soon. I will make sure to let you know how everything turns out.

There has been a few changes in life lately which are a little difficult to absorb and explain. Monique now attends the school where I teach. I find this much easier as I can see for myself how her daily routine is going and how she is feeling.

Our last appointment at the Heart centre was o.k. The news we receive is never 100% positive but always optimistic. The measurements for Monique's aorta seem a little large and concerning. Her cardiologist wants an MRI done in the fall in order to get a better look. She had MANY questions this last visit. She watch her echo and asked what all the different parts and sounds were. When she met with her cardiologist he assured her that she should not worry about her heart. She said she did sometimes. She was in the hospital twice this past winter with the flu and chest pains. We spent March break in the hospital.

What will next year bring for Monique? I am unsure! I don't know. I wish I did. I wish I could tell her she never has to go through so much pain again. But I can't. As a mother it tears me apart. I feel as if I did something wrong to cause her to have to live this life. She does not know ay other life. But I know the difference. This is not the life you want your children to have. Parents who do not have sick children like we do say they understand but, they don't. I can appreciate them trying to imagine what it would be like. But nobody understands quite like other CHD parents.

PLANNING!!

Hi everyone...

No news is good news right? It has been a while so i thought I would post a little update. Christmas was fabulous as was New Years. We spent it surrounded by friends and family which we love. It was wonderful!

Monique is doing great. She is growing and is now SUPER excited for her wish trip to Disney. She talks about it ALL the time now. Her mère mère got her the barbie glamour jet plane for Christmas and she has gotten over her fear of getting on an airplane. Now it's all she talks about.

Before I continue planning however, I have to sit and wait for her passport to arrive. I wasn't pressed for time with her passport because she didn't want to go yet. But since she has gotten over her fear of getting on a plane she wants to go March break. I am hoping it is not too late to plan once I get her passport. It will be a shame if we cannot go because of that technicality! So for now I am researching all the fun stuff we will do.

Monique wants to see a Cirque du Soleil show, meet princesses, see animals, see Cinderella's castle, Minnie and Mickey, Buzz Lightyear... (she loves the Toy Story 3 movie!!)... but the big things are the princesses. She loves them... especially Rapunzel and Tink! I cannot wait to see her eyes looking at all the magical things there. - I am excited too, I have always wanted to go to Disney. But this trip is about her and what she wants to do... so, maybe someday I will go as an adult trip and do all of the adult fun things there too!

November

Hi everyone... things are still going well. I thought I would share a few pictures with you. Monique is still loving hockey! I am so glad because I love bringing her and watching her on the ice.

Christmas is coming... she has a very long list as do most children. I just hope we are all healthy and happy.

October

Hi everyone,

Monique check-up went well. We are hoping to get another few years out of her last repair. keeping my fingers crossed.

School is going well and she is learning well. She loves her new glasses.

Monique is an active little girl. She has many activities which keep her going. She does Jazz dancing, girl's hockey and swimming. I want her to be involved with as much as she can now in case she cannot later in life. I want her to have all the experiences she needs in order to heal after the next surgery; to give her something to looks forward to after she has healed.

Another school year has begun

Hi everyone... I have not posted lately because we have been so busy. We camped all summer. Monique really enjoyed the outdoors! She started the second grade this year. She is getting so big. She also got glasses. Wait til you see... they are adorable. She looks so distinguished.
Monique has a cardio check-up at the end of September. I am really hoping it goes well. Keeping my fingers crossed.