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

Making Progress

Greetings from Seattle Children's, We are happy to inform everyone that Mason is doing very well and has been moved out of ICU and over to, "the floor." This is a good sign that he is recovering on schedule and should be just a few days away from going home. He orginally had three or four I.V.'s in and is now down to one, which included the removal of the main one in his neck. Kelsey and I were looking forward to that one being removed. He still has two drainage tubes in his chest which we would like to have had out already but the Dr.'s are being cautious because he drained a little more blood than normal his first day after surgery. The plan is to have those taken out tomorrow which will make him feel even better. He is waking up on occasion but isn't quite up for smiling yet...understandably. Kelsey and I just want to hold him and make him feel better but unfortunately he seems to become more uncomfortable when we do, so we try not to be too selfi...
Post a Comment
Read more

Welcome to HOLLAND

It was time to start collecting all of the information needed to schedule and prepare for Mason’s Fontan Surgery. So last Friday – Mason went in for his Cardiac Catheterization. (Defined below) Cardiac Catheterization (Heart Cath) is the insertation of a catheter into a chamber or Vessel of the heart. This is done for both investigational and intervention purposes. Subsets of this technique are mainly coronary catheterization, involving the catheterization of coronary arteries, and catheterization of cardiac cambers and valves. (Did you get all of that?!?!?) When we arrived at Seattle Children’s Hospital– Greg was busy checking us in and I sat with Mason in the Surgery Center waiting area. Mason and I talked, I kissed him, I played with him… I pulled out all the stops so that he would not remember that he hadn’t eaten in 12 hours and that he was at his least favorite place – Children’s Hospital. During some point of my “operation distract Mason” I noticed you staring at us from acr...
1 comment
Read more

10 Years....

Mason, It is amazing how time passes by in the blink of an eye after you have kids…. It seems like just yesterday, yet this week, 10 years have passed since our life was turned upside down. The day our world took a turn we never saw coming. Each year leading up to the anniversary, I get anxious, emotional, sad, scared, and angry. I WISH 10 years later I felt differently. But I don’t. It almost feels just as raw as the day we were told…. This year. I am consciously recognizing what it is… MONDAY FEBRUARY 11 th ,2008. We sat in a room where a Doctor carefully articulated and explained to us about your special heart. There is one detail about this day I have seemed to forget in time. That is the name of the doctor who told us about our fate…. I could describe to you in details about anything else you might want to know, who was there, what we were wearing, what the Doctor himself looked like and the conversation we had. Yet his name, which used to be...
1 comment
Read more