Two months ago not only Katy, but our entire family was given a new lease on life. In some ways not much has changed, Katy still has an overwhelming amount of doctors appointments. We actually go more often post transplant then we did pre transplant if you can believe that. Her medicine schedule has become more rigorous, and time sensitive.
What has changed… we are happy!
Although our day to day life and struggles may look the same for the next year. We see light at the end of the tunnel… light we haven’t seen in years. We know that we have many more days and years filled of watching these two grow up together.
Katy’s energy is high and she is thrilled to be running with out a backpack 24/7. Excited for many more years of hunting for eggs at Nana & Papa’s.
Oh, and with this new heart, came new energy and came a bit of sass… yeah, lets call it sass. It’s the terrible twos with the ability to articulate her frustrations.
Mike and I are also learning to change our way of parenting. Because parenting a healthy child is much different than parenting a child with a terminal illness. All parents pick their battles but when you are afraid your child may die tomorrow you tend not to set many limits for them. Of course we parented Patrick in a similar manner, for a completely different reason. We tended to try and get him extra goodies, or stop at his favorite muffin shop out of guilt. Because when you have 2 or more children and one has a terminal illness… it takes Mommy (daddy) guilt to a whole new level.
So yes we have some work to do on the behavior end of life. I turned to my teaching stash and Pinterest.
It has been a great tool… Great visual reminder, teaching them to work towards something they want to do/get when in the past we may have just done it to do it.
Slowly, but surely we are finding our normal… we have days when our living room/ play room looks like this: how can they do this to a room in less than an hour?! I am so thankful that we are home with two healthy children capable of making messes, talking back, and yelling at each other in ways only a brother and sister can.
April is National Donate Life Awareness Month. Please consider becoming a donor.
“The only thing you take with you when you are gone is what you leave behind.” – John Allston.