I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, June 19, 2016

Always Popcorn First, Then California, And Totally Ikea



As the last minutes of Father’s Day 2016 tick away I am walking through my Dad memories. I am blessed to have a father who loves me and I love him. He died unexpectedly in 2005, but I have found certain things that continue to tighten my bond with him even though he isn’t on earth with me now.


I eat a lot of popcorn. Dad did too. He taught me how to pop it on a crazy gadgety popcorn popper he had found someplace and we used it a lot. I would sit by him as we watched (earliest tv show memory) Magnum P.I., then Commish, and eventually CSI Las Vegas which he really like when it first came out. But it was something we did together a lot, eat popcorn (I always wanted to sit by him at the movies because he would have the popcorn bag). So now I continue to be consumed with eating popcorn.

Dad would take any opportunity to make a quick trip to California with us that he could. Eventually we all got to go on solo tag along business trips with him. Frequently he would fly out with his work to California then have my Mom drive us all up to him and after we played for a few days we would all drive home together. I am not sure if it was his personal only child experiences that drove him to get us to the beach and amusement parks as often as he did, or if it was just because he was super cool but if the window of opportunity opened even a little he would jump in and make these summer California trips happen for us. One of my Aunts told me after his funeral that hearing about his enthusiasm for family vacations inspired her to do it more often with her family. So just recently when we drove the road that Dad and Mom had driven us dozens of times as kids to California with our own kids the memories and the connections to my own experiences with my Dad and Mom came back to me. We stopped at the same place to eat that Dad enjoyed. We had a contest to see who could spot the ocean first. We sang along to our favorite songs (or at least I did anyway). It was so cool and it was so nostalgic and very special and I think Dad enjoyed our trip with us too. Since most recently my Mom was able to come with us, he surely was watching what a beautiful Grandma she is.

The last solo outing I had with my Dad right before he died was a trip to (at the time recently opened in our area) Ikea. He and I partnered up for a long walk through the home goods mega store. I remember he bought a handful of those grocery sack holders with the holes in them, because they were a good deal and he thought Mom would like them (and of course he could give a few away as well). My Dad was a marathon shopper. He could walk the stores with the best of them, shoppers I mean. Definitely did not fit the male stereotype of not liking to shop. We would spend hours at outlet malls growing up, so Ikea one of the ultimate shopping experiences I feel, was right up his alley. So at least once a year, often on or around my own birthday I take the time to walk through Ikea and never fail think of him and our outing.

One of my favorite conversations and memories happened the night before the morning my Dad died. I was making the long 30 mile drive home from school at night and called home to my parents land line to talk. Dad answered and told me, “sorry but Mom wasn’t home.” I told him that was fine I would like to talk to him. We had such a good talk. I probably couldn’t have scripted a better final conversation. At one point we were talking about our family and he said, “if you mess with one bean you mess with the whole burrito.” Which he said a lot but the fact that he tacked it on in that unplanned last conversation we had on earth was absolutely perfect.

A sappy post, but one day when I finally upload all of this into a book for my kids hopefully they will read it and know their Grandpa a little bit better and see pieces of him in me.




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