Listening to a complete stranger tell us our TWO little boys are going to have a very difficult medical LIFE that will end between ages 10-15 changes ALL THINGS as you knew it, and unfortunately changes the person you once were. Our every day now take on a whole new meaning.
Hearing the words LIFE EXPECTANCY has caused us to think much differently about TIME and LIFE.
LIFE expectancy means running out of TIME…….
Hearing life’s TIME clock ticking in your head goes beyond words, an unimaginable indescribable feeling for a parent. We hear TICK TOCK morning noon and night. We hear TICK TOCK on good days as well as bad days. TICK TOCK…TICK TOCK is what we hear when we smile, cry, laugh, dream, and pray.
All we think about is ……How much TIME do we really have left with Jason & Justin?
And we find ourselves saying so often, “God, I wish we could just go back to the TIME when our LIFE was normal!”
The words LIFE and TIME takes on a whole new meaning to us.
We choose to spend as much TIME as we possibly can with our children, soaking up all the adorable things they say, watching the priceless things they do, and creating memories to keep and share with our daughter, long after they have left us. We always make sure to give the TIME for one more story before bed, or one more TV show, and of course – yes you could sleep with us this TIME.
Having such limited TIME with our babies has made us realize LIFE is short, priorities needed to be set. We have zero TIME to waste. Keeping our household as stress-free and happy as possible is what needs to be done. So we learned very quickly to distinguish what and who is “REALLY” important in LIFE. Things that used to be important, stressful, or bothersome become absolutely meaningless. When you look at the big picture those things just become TIME wasters. NOTHING is as important as your children.
TIME is what we need to make the most of, and that is what we have the least of!
LIFE itself is TIME-consuming.
“There is just not enough TIME in the day to get things done” …is true for all families, but it takes on a whole new meaning with medically fragile children on a TIME limit. We are constantly asking each other, “What TIME is the Dr. Appointment? What TIME do we have to leave for the hospital?” During our weekly 4 hour treatment, we ask “What TIME did it start, how much more TIME is left, what TIME they will be done? What TIME did they have their Medication? Is it TIME for medicine again?
Having such a TIME consuming medical LIFE, we also vow to make TIME to give them as normal a LIFE as possible. Again, constantly asking and reminding each other normal family things like; what TIME is baseball, football, karate, play dates, story hour…and so on… trying to make the TIME to fit in all the things that healthy kids get to do too.
TIME is required to get everyday things done for work, home, and school. Factor in all the TIME spent with treatment, doctors, and hospitals. Don’t forget the time we spend trying to keep them as “normal” a life as we can. Running a household of five and keeping that household as clean and germ-free as possible is beyond TIME-consuming. Then add in the TIME and effort we spend scrambling to find and do everything and anything possible to help SAVE OUR LITTLE BOY’S LIVES. We realize on a daily basis we are running out of TIME!!!!!!!!!!!!!!!!!!!!!!!
Running out of TIME each and every day is physically and even more emotionally draining. It slaps us in the face with the reality that each day gone by we are closer to the TWO days we dread the most, losing Jason and Justin.
As much as we wanted to, and tried to, we just couldn’t do it all ourselves….we had to come to the realization that we need help. Having to depend on other people to help get through your every day and maintain a “normal “LIFE is a constant reminder of how little TIME we really have every day, and of how different and difficult our LIFE has become. Also not an easy thing for proud determined individuals to give in to.
TIME matters so much more these days. TIME is much shorter than you can ever imagine. TIME is something we now dread. Hearing the phrases “ How TIME flies,…Where has the TIME gone…I can’t believe how fast TIME went”… is now heartbreaking for us. TIME has become our least favorite word.
TIME is no longer on our side.
Hopes & Dreams