Some might say Kevin and I are the furthest thing from normal. Poke fun at us. Tell us we're two peas in a pod, made for each other. We get each other and being ourselves is what we do best. Living the way we do, it's our normal.
On November 6, 2010 my facebook status was this: our little family was reunited for over an hour yesterday!!! boys had a great time with Daddy...kept asking him "where do you play here Daddy?" Daddy's reply was "I'm not allowed to play." Both boys frowned & quickly said "you're silly Daddy!" LOL probably the most normal hour the four of us have had in a long time. Back then we were taking normal day by day. Trying to create a normal family life while Daddy was in the hospital. We never knew the next time the four of us would be together in the same room. As parents we did our best to make our boys feel as comfortable as possible during those visits to Cedars. Walking outside at Cedars, chaperoned by nurses who became members of our family. Sometimes we only got 20 minutes and other times we got an hour together. It was "our normal" back then. Discussing Star Wars with Daddy, singing songs, using the force to open hospital doors...again, it was our normal back then.
When Kevin came home with the LVAD I was determined to make our home life as normal as possible. It may have taken more than a few weeks to try and figure it all out but we did. We were motivated to live each day as normal as we were allowed. If we didn't then life would've just passed us right by. We would've missed out on all those "firsts" with our boys. First time on a ferris wheel. First time on a rollercoaster. Legoland. Living with the LVAD became our temporary normal. And then transplant came which again gave us a new normal with a whole new set of rules for the first few months.
My husband is presently six months post transplant. We are doing all the normal things that every other family is doing. And last Friday night could not have been more normal. My little family of four went out to dinner. Sounds normal, right? Let me explain. One of our boys has extreme food allergies. We have to be very careful who cooks his food, cross contamination, carry an epipen, the whole deal. The only restaurant we knew that was safe for us to eat at with him was Buca di Beppo. The past year and a half we were knee deep in LVAD's, transplants, and tumors that everything else had to hold on so to speak. One of my New Year's resolutions is to find more allergy friendly places for my son to eat. To make him feel as normal as possible and that having food allergies, while a challenge, will not hold him back.
Our Friday night dinner was at Islands. We shared a ginormous plate of french fries. Made silly faces at the camera. Made 250 trips to the bathroom because that's just what twin 4 year olds do. Enjoyed each other's company, talking about our day, laughing, giggling.... and from a distance we looked like the typical, normal American family enjoying dinner out. If you saw us and knew us....you'd know that up close and at heart we're the furthest thing from typical. We are a family of four, finally at a point where living post transplant and "our normal" has allowed us to be on the same page.
|My silly family of four December 31, 2011.|