21) Have your priorities changed since you lost your child?
Before Liam passed away my main goal was to keep him as healthy as possible. That was my top priority. My second was to give him as normal a life as possible. It was extremely important that despite his many medical issues, that he be a normal boy and experience normal things.
Playing in the mud.
Going to races.
Going to school.
Having birthday parties.
(October 2015 Pumpkin Decorating)
Those are just to name a few. I didn't want him to feel any different than any other boy his age. I also wanted him to not be ashamed of his differences like:
His feeding tube (which he enjoyed showing EVERYONE).
His nasal cannula and oxygen (the kids at school said he was cool like an astronaut).
His frequent meds and breathing treatments.....
and more.
(November 2015 After having to go to school with his oxygen)
I would say that I succeeded greatly. Or that WE (my husband, daughter and I) succeeded greatly because it really was a team effort.
(2014)
However almost every minute of every day was planned out and busy. Even "free time". His schedule always came first. It was always TOP priority. His health was always TOP priority. We'd drop whatever we had to at a moments notice to rush to Valley Children's ER. Bags stayed packed with what I donned our hospital gear. Everything was meticulously planned out and there was always a back up plan.
When Liam passed I became lost. Even to this day 2 1/2 years later, I can look at the clock and tell you what I'd be doing if Liam were alive. Since his passing all our priorities changed. Yea we knew we could lose him in the blink of an eye because of what we went through in NICU and his first two years. As the years went by it became less and less likely though that it would happen. Then it did. We got a quick lesson in how quickly our lives could be over and one of us could be gone. That changed a lot of things for us, including our priorities.
Our main priority now is to give our daughter a better life. To enjoy life more than we did before and experiencing things we couldn't do because of Liam's health. We started kayaking as a part of this new outlook on life. I can tell you with almost perfect certanty that if Liam were here, we probably never would have even tried kayaking because it would have compromised his health and well being, plus my sanity because to have MY crazy wild little boy on a kayak would drive me to insanity with worry.
(August 2017 Justin, Lanie and I relaxing on the kayaks)
We try to work to enjoy life more versus work to pay bills only. I can say our lives did a complete 360. To be honest that's the only major priority.
Now I would trade it all back for my son in a hot second if I could.
Click Here for the entire list of journal prompts.