"To breathe easy is to live free". I saw that quote before Elias' transplant as he lived in a state where CF had robbed him and our family of so much. Now post transplant this is what that quote means to me.
It means breathing room air without being tethered to an oxygen concentrator or Bipap machine.
It means enjoying taking a shower because the humid air doesn't make it impossible to breathe.
It means deciding as a family to go somewhere and just leaving.
Not having to ask parents to come along to help with Elias and the kids and if no one is free, not being able to go.
Not having to calculate how many oxygen tanks we will need for the number of hours we are gone.
Not having to leave him at home because today just isn't a good day.
Not having to bring a wheelchair along.
It means making plans and not planning on having them ruined by yet another exacerbation and hospital stay.
It means not living in a hospital recliner and showering in a public hospital shower for months just to make sure his anxiety stays controlled and I don't miss the Dr's rounding.
It means walking by my husband as he lay napping on the couch and not pausing just to make sure he's still breathing.
It means not reaching my hand out to touch him at night for the same reason.
It means sleeping in the same bed again rather than him sleeping in a recliner in the living room.
It means family vacations.
It means running in the yard, play with our kids and teaching our son to ride a bike.
It means walking the dog.
It means walking down the stairs to basement to do laundry and back up again.
It means going from less than 20% lung function to that of an average person.
It means no oxygen concentrator, no continuous IV's, no feeding tube because it just takes to much effort to breath and eat at the same time, and no chest tube hanging out of his chest to prevent another pneumothorax before transplant.
It means no regular visits from home health and infusion nurses.
It means not fighting every. single. day. to figure out how to get him on the transplant list and hoping that lungs will come in time.
It means scars that symbolize life and a future as well as emotional and physical trauma.
It means conversations about going back to work some day.
It means more holidays, birthdays, anniversaries and years together.
It means living life like a fairly normal family again.
It means so much more, but ultimately it means more time, more experiences, and more memories.
