Skip to main content

Trying for a comeback...


This Blog; we have a love hate relationship.

Love –Because this blog is always there when I need to have my “therapy” session a.k.a. create an emotional blog post. It never lets me down and even though I see how many people visit my blog each day I feel safe, alone and protect when we are together. I feel like what I share on this site is for my eyes only – even though I know that is FAR from reality!

I feel such a sense of responsibly to create hope for families who were dealt with the same cards as us that when I can’t bring myself to share our life and my feelings I feel guilty.
This is where I am today… Feeling guilty and tongue tied… Not a day goes by that I don’t think about writing. The problem I can’t seem to find the words and I am having a hard time figuring out why… Not that figuring out the why would even help – but I tend to like to know pretty much everything J



Mason continues to thrive and people seem to think he is fixed; but he will never be fixed. He will always only have 1/2 of a heart. Every day since he was first diagnosed has been filled with anxiety, worry, wondering how long we will get, panic at the first sign of a stuffy nose or cough, constantly worrying about his SAT's and analyzing his skin color. This doesn't go away the older he gets. I wish I could say it does and that the feelings simmer down but they don't.   
When you hand your child over for multiple times for major open heart surgery it is in the front of your mind everyday. 

Mason and the HLHS community gave me “accidental purpose” and even though this life is harder than the average. Mason is worth it!!! He is the one who is teaching me about living life even though as his mother that should be my job. 

 Life is a gift, and it offers us the privilege, opportunity, and responsibility to give something back by becoming and doing more 

Comments

Jenna said…
Hi Mason

My name is Jenna. You are a brave courageous fighter, You are a special miracle from god, a gift from above, earthly angel, a smilen hero.

I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

I wrote this poem
Each of us are Special
Each of us different,
No one is the same
Each of are us are unique in our own way,
Those of us who have challenges, we smile through our day.
Those who of us who have challenges, we smile through our day.
It doesn't matter what others say
we are special anyway.
What is forty feet and sings? the school chior http://www.miraclechamp.webs.com
August 27, 2012 at 8:24 PM
Post a Comment

Popular posts from this blog

Loaded Diaper?!?!?

Today's post title comes to you from the one and only Greg Garka... Thanks for the idea babe! As far as Mason is concernced today was another good day for our little man! We made our goal and got up and went on a total of three walks. The last walk of the night he spotted the “playroom” and was interested so we stopped and visited with our neighbors while he played. It was the highlight of the day. His appetite decreased today but that is to be expected since he hadn’t yet had a bowel movement (in 6 days)– however about 60 minutes ago things changed in that department and I am happy to report his bowels are working and back in action… During his echo he was again a crowd pleaser and was on his best behavior. The technician said that he was the best 3 year old she has done. It is so funny; he gets upset when something is about to happen and he doesn’t understand what. He tells us he is scared and then after we explain to him what they are going to do and that it won’t hurt –
2 comments
Read more

Our Day at Children's

Hello all, Kelsey and I spent the morning at Children's Hopsital in Seattle today, what a place! They sure do a good job of trying to make the kids feel comfortable...part of me didn't even feel like I was at a hospital. We met with a Cardiologist, Dr. Vernon, and a Paranaetologist, Dr. Holmgren (yes, Mike Holmgren's daughter). Both of them were very nice and extremely informational. Dr. Vernon did confirm that Mason has HLHS and is a candidate for the Fontan Operations, which are the three stage surgeries he will have to go through to get his heart working as normal as possible. Kelsey and I have been talking about where we would want to do the surgeries in case we weren't comfortable with Seattle Children's. We knew going in that Children's in Seattle is one of the premeir hospitals in the country, but weren't sure how they were compared to other hospital's like University of Michigan with this particular heart disease. I'm glad to say that w
3 comments
Read more

Wordy Wednesday or Wordless Wednesday????

The big question of the day should I be wordy or wordless on Wednesday? If I go WORDY a post might have quotes such as: - When you are through changing you are through - It takes both rain and shuneshine to make a rainbow - If a care is too small to be turned into a prayeer, it is too small to be made into a burden - We make our plans, but the Lord determines out steps. Proverbs 16:19 - The world at its worst needs a church at its best - The essence of generosity is self-sacrifice - Philanthrophy, like chartity must begin at home - A reject opportunity to give is a lost opportunity to recieve If I go WORDLESS I could share my life through photos... Message me, facebook me, call me, leave a comment or talk to me in person either way let me know your thoughts...
4 comments
Read more